Advance Directives

A DNR (Do Not Resuscitate) order is a physician’s order stating that hospital staff should not institute CPR if you experience a cardiac or respiratory arrest. It is generally reserved for terminally ill patients or those who are very elderly and medically frail, who would likely not survive a cardiac arrest. The order is written in alignment with your wishes when admitted to the hospital and applies to that single hospital stay. When you are discharged, the DNR order becomes null and void. 

An out-of-hospital DNR order, on the other hand, is a durable order that is valid both in and out of the hospital unless or until it is revoked. It is written by a doctor when you both agree to allow a natural death in the event that you stop breathing or have a cardiac arrest. In states where such orders are recognized, first responders and emergency personnel cannot legally perform CPR if the order is presented to them.  

With that being said, there is currently no national DNR law, and state requirements may differ significantly. According to the American Society for Healthcare Risk Management, if you wish to avoid CPR you should have both an advance healthcare directive (living will) and a durable power of attorney in place, as well as a DNR and/or a POLST. This may help ensure that your wishes are honored if you find yourself in the emergency room. 

If you live in a state where out-of-hospital DNR orders are recognized, your doctor will write the order on a state-specified form. Most EMS personnel recommend that the order be taped in a highly visible location, such as a refrigerator or your bedroom door. The DNR should also be in your electronic health record, although hospital personnel may not take the time to look for it if you are taken to the emergency room in cardiac arrest. To avoid that scenario, wear a Medic-alert bracelet that states that a DNR order is on file. 

Keep in mind, too, that neither a DNR bracelet or a DNR tattoo will be honored if a written physician’s order does not exist. 

Sources

“Do Not Resuscitate (DNR) Laws by State 2025”. World Population Review. https://worldpopulationreview.com/state-rankings/do-not-resuscitate-laws-by-states

There are a number of different formats for advance directives, and no one form will work for everyone. For one thing, many states have a state-specific form that they prefer residents use. Some states (California, for example) combine a living will and a durable power of attorney for healthcare into a single document, while others require them to be filled out separately.

Additionally, most states have specific requirements for residents of nursing homes. For these reasons, if you move from one state to another, it’s a good idea to create a new advance directive. Similarly, if you spend a considerable amount of time in more than one state, you may wish to have an advance directive that is valid in each one.

States also have different laws around finalizing the documents.

Most require two witnesses, and some require notarization. To learn the requirements in your state, visit Nolo’s Finalization Requirements for Healthcare Directives. You can also download a copy of your state’s form(s), along with detailed instructions for filling them out, from AARP.

The website PREPARE, created by geriatrician Dr. Rebecca Sudore, is also an excellent resource that will walk you through the process of thinking through and sharing your wishes about end of life and then help you create a document that is legally binding where you live.

Still another option you may want to consider is the Five Wishes form, an advance directive created by the nonprofit Aging with Dignity in conjunction with the Robert Woods Johnson Foundation in 1996. It combines a living will and a durable power of attorney for health care in a single document. According to Aging with Dignity, the form has been used by over 25 million people worldwide. Its

popularity has been linked to its simple language and the fact that it addresses personal, emotional and spiritual needs as well as medical care. The form is available in 27 languages and Braille.

The Five Wishes document meets the legal requirements for an advance directive in 42 states as of this writing. The other eight states (Alabama, Indiana, Kansas, New Hampshire, Ohio, Oregon, Texas and Utah) require a statutory form. However, the Five Wishes form can be attached to that document as a guide.

Although Five Wishes is an appealing and user-friendly document, it has been criticized for its ambiguous language and “pro-life” slant. In fact, there is language in the document that might actually thwart your wishes regarding medical care at the end of life.

Specifically, Wish Number 2 (“My Wish For the Kind of Medical Treatment I Want Or Don’t Want”) includes the general instruction,

*I do not want anything done or omitted by my doctors or nurses with the intention of taking my life.” This instruction poses a very real conflict if you also check the box that says “I do not want life-support treatment” – a conflict that could prevent doctors from withholding or withdrawing life support because that would “intend” your death.

Our advice? Use the Five Wishes form if it suits your needs. Just be sure to cross out, date and initial the section noted above. Or you may use the statutory form for your state.

Sources

“Finalization Requirements for Health Care Directives”. Nolo. https://www.nolo.com/legal-encyclopedia/finalization-requirements-health-care-directives.html

“Find Advance Directives Forms By State”. AARP. https://www.aarp.org/caregiving/financial-legal/free-printable-advance-directives/#more-advanceddirectives

“Five Wishes: For Myself”. Five Wishes. https://www.fivewishes.org/for-myself/

“Taking bold leaps to transform health in our lifetime”. Robert Wood Johnson Foundation. https://www.rwjf.org/

Your advance directive can be as specific or as general as you wish. However, the more information you provide, the more likely it is that your wishes will be honored when you cannot speak for yourself.

Most statutory advance directive forms contain certain general information, such as the following: 

• The kind of care you would or would not want to receive in specific circumstances — for example, if you had a life-limiting illness such as cancer or end-stage kidney disease.
• The kind of care you would like to receive if you were permanently unconscious in a “PERSISTENT VEGETATIVE STATE.”
• How long you would want life support maintained if it became obvious you could not recover from an illness or accident in a meaningful way (for example, to return home and care for your own needs).
• Who you designate as your healthcare surrogate/durable power of attorney for health care.

However, you can add as much detail to these forms as you like. For example, you can state your preferences regarding organ, tissue or whole-body donation and your choice for final disposition if you wish. You may also add information about specific types of medical care that doctors may wish to institute if you are very ill. For example, you can state whether or not you wish to receive the following:

• Antibiotics if you have an infection
• DIALYSIS if your kidneys fail
• Artificial ventilation if you stop breathing or your lungs are failing to provide enough oxygen to sustain life
• Treatments to keep your heart working properly, including intravenous medications and implantable devices such as an implantable cardioverter defibrillator or ICD, a pacemaker, or a left-ventricular assist device or LVAD
• Blood transfusions for life-threatening bleeding
• Artificial hydration and/or nutrition

You can also designate people who you want to be able to visit you if you are in the hospital or ICU, even if they are not related to you by blood or marriage, using this Visitation Authorization form.

Creating a truly effective advance healthcare directive requires communication and planning. If you are seriously ill or have a life-limiting illness, speak with your doctor and your family about goals of care. You may also wish to consult these helpful tools and resources offered by Compassion and Choices to guide your discussions and help you create an end-of-life plan. 

Sources

“Implantable cardioverter-defibrillators (ICDs)”. Mayo Clinic. https://www.mayoclinic.org/tests-procedures/implantable-cardioverter-defibrillators/about/pac-20384692 

“Heart Failure and the LVAD”. WebMD. https://www.webmd.com/heart-disease/heart-failure/left-ventricular-assist-device 

“Hospital Visitation Authorization Form”. Compassion & Choices. https://compassionandchoices.org/resource/hospital-visitation-authorization-form/ 

“Tools to Finish Strong”. Compassion & Choices. https://compassionandchoices.org/eolc/finish-strong-tools/ 

Advance directives should be reviewed and revised whenever major changes occur in someone’s life or healthcare preferences. A general recommendation is to review these documents at least once a year, but suggestions vary. For example, the nonprofit Compassion & Choices recommends that people review their directive whenever one of the “5 Ds” occurs:

• Death of a loved one
• Divorce of major family change
• Diagnosis of serious health condition
• Decline or change in health
• Decade has passed

Sometimes, an individual must update a directive based on who is designated as the healthcare agent. For example, a named agent may be diagnosed with a serious medical problem, or their health may begin to decline. In that case, updating the directive to name another agent is highly encouraged. Another example is if the designated agent is a former spouse after a divorce. Some people may not be comfortable maintaining their former spouse as an agent and would need to update their directive with new forms after the divorce is final. 

 A death in the family can be another cue to update an advance directive. Since deaths can affect the family structure and support system, some family members may become limited in their ability to serve as a named agent if the recent death has resulted in increased responsibilities. Similarly, if the designated agent dies, the documents will need to be updated to appoint a new agent. Otherwise, there will be no one to act on behalf of the patient when the advance directive goes into effect.

Moving to a new location is another significant change that often requires an update to advance directives. States often have specific requirements regarding the information that advance directives must contain to be legally valid. While some states may honor the current version of the advance directive from the previous state, the best practice is to confirm validity and make any necessary updates.

Sources

“Advance Care Planning: Advance Directives for Health Care”. National Institute on Aging. https://www.nia.nih.gov/health/advance-care-planning/advance-care-planning-advance-directives-health-care

Compassion & Choices. https://compassionandchoices.org/ 

“How to Revise Your Estate Plan After a Divorce”. DivorceNet. https://www.divorcenet.com/resources/how-to-revise-your-estate-plan-after-a-divorce.html 

“How Often Should You Update Your Documents?” Hurley Elder Care Law. https://hurleyeclaw.com/how-often-should-you-update-your-documents/ 

“Keep your health care directives up to date”. Harvard Health Publishing. https://www.health.harvard.edu/staying-healthy/keep-your-health-care-directives-up-to-date 

Yes, individuals can change or revoke their advance directives at any time as long as they are capable of making their own decisions. Advance directives are intended to be living documents that are updated as needed based on the values and goals of the individual. If there are changes in treatment preferences, their health status, or if they have experienced a major life event, individuals are encouraged to update their advance directives to reflect those changes. 

In fact, it is highly recommended to review advance directives regularly and update as often as needed. 

Any changes that are made to an advance directive should be shared with family, loved ones, the health care agent, and the relevant care team to ensure they are aware of the updates. Although advance directives can be changed at any time, there are instances when revoking an advance directive may be more convenient. Potential scenarios where revoking an advance directive is more appropriate than updating it can include: 

• Naming a new agent responsible for making decisions, ensuring that it is clear who has the newly appointed authority
• When beliefs and values have changed significantly and updating is more time-consuming compared to establishing a new advance directive
• When the previous advance directive has too many unclear instructions and creates too much ambiguity regarding the actions that need to be taken 

While oral revocations of advance directives can be acceptable, it is highly encouraged to have written documentation of the revocation and to destroy former documents that are no longer applicable. This helps to establish more clarity regarding which documents are current. Finally, although advance directives can be established without hiring an attorney, it is advisable to seek professional guidance when determining whether an advance directive should be revoked or updated to reflect recent preferences and values. 

Sources

“Frequently Asked Questions About Advance Directives”. American Cancer Society. https://www.cancer.org/cancer/managing-cancer/making-treatment-decisions/advance-directives/faqs.html 

“Revoking Your Health Care Directive”. Quicken WillMaker. https://www.willmaker.com/legal-manual/health-care-directives/revoking-your-health-care-directive.html

The Five Wishes Advance Directive is a form of living will developed by Jim Towney, an attorney who functioned as Mother Theresa’s legal counsel and worked side-by-side with her as she cared for the dying in Calcutta, India, from the 1950s until her retirement in 1995. Towney later founded Aging with Dignity, a nonprofit organization with roots in Catholicism, to continue working towards providing all humans with a dignified death. The Five Wishes living will is an outgrowth of that goal. It is the only formal living will to address end-of-life goals not just for medical treatment or lack thereof but in the personal, spiritual and emotional realms. It is the world’s most widely distributed living will and is now available in digital format, customized to meet the requirements of all 50 states. 

The Five Wishes advance directive contains five sections. The first, Wish One, designates your healthcare agent — the person you wish to make decisions for you if you cannot make them yourself. The form explains the role of a healthcare agent and gives some guidance about who to choose for the role. It then lists several decisions a healthcare agent typically can make for someone who cannot decide for themselves. 

The second section, Wish Two, includes instructions for the kind of medical care you would like to receive in several scenarios. It defines “life support” in concrete terms and provides a space to indicate if you want to change that definition due to your “personal or religious” beliefs. It goes on to outline three options from which you can choose:

• I want life support.
• I do not want life support, and if it has been started, I want it stopped.
• I want to have life support if my doctor thinks it will help. But I want my doctor to stop giving me life support treatment if it is not helping my condition or symptoms.
  

The form further clarifies these instructions by asking you to indicate your choices in several different scenarios, e.g., close to death, in an irreversible coma or permanent severe brain damage.

Wishes Three and Four in the document address pain management, comfort care and measures pertaining to quality of life. They contain some specific suggestions for things you might want as you approach death, such as whether or not to have clergy present, whether or not you wish to die at home, and who you may want to visit.

The last section, Wish Five, provides an opportunity for you to communicate your values, beliefs and final wishes to your loved ones by saying yes or no to several questions. It also allows you to write a personal message to loved ones and add any items the form doesn’t address. 

Sources
Aging with Dignity. https://agingwithdignity.org/

The Five Wishes advance directive is an extremely popular choice among people who wish to document their choices for end-of-life care. Proponents claim that it simplifies complex issues around life-sustaining treatments and goals of care and provides an easy-to-follow format for documenting what an individual wants done for them as they near the end of their life. However, some believe it addresses too many possible scenarios, contains a degree of ambiguity that can be confusing, and incorporates a religious view of end of life that not all agree with.  

Overall, the Five Wishes living will gets high marks for its focus on values as well as medical care. Most statutory advance directives for healthcare or living wills focus on two main areas:

• Identifying who will make decisions for you should you become incapacitated and unable to make them yourself
• Identifying what medical care and supportive interventions you do or do not want implemented should you become incapacitated and critically ill.

The Five Wishes document takes these instructions further, and allows the person making the declaration to identify which life-sustaining interventions they would like to have implemented in a number of specific scenarios. It also addresses comfort measures such as pain management and personal hygiene; spiritual considerations such as whether to involve a chaplain or pastor in one’s end-of-life care, and communications with loved ones around last wishes, values and beliefs.  It also includes a section covering how you wish to be remembered and your choice for final disposition of your body after death. 

Despite its popularity, however, many attorneys state that the Five Wishes advance directive for healthcare is probably best used as a guide for having important conversations about your end-of-life wishes rather than serving as your formal living will. If you wish to use it to enhance your existing directive, you can complete it along with your state’s statutory form and share copies with  your healthcare agent, healthcare team and other important people in your life.

Sources

“Five Wishes” Sounds Good, But Legally Dangerous.” Law Professor Blogs Network. https://lawprofessors.typepad.com/trusts_estates_prof/2009/06/in-be-careful-what-you-wish-for-analyzing-the-five-wishes-advance-directive-97-ill-b-j-242-2009-ray-j-koenig-iii-p.html#:~:text=The%20Five%20Wishes%20document%20uses,not%20serve%20as%20his%20agent.

Because illness and accidents can strike at any age, every adult should have an advance directive and a durable power of attorney for health care. According to the Cleveland Clinic, this means anyone over the age of 18. In most states, emancipated minors may also execute an advance directive if they choose to do so. 

That being said, a significant number of American adults do not have an advance directive in place. Although the number has been creeping steadily upward in recent years, a 2023 national survey conducted by Compassion and Choices found that 93% of adults recognize that it is important to have an advance directive, but only 37% of those asked had completed one. Of those that had, only 12% had shared their advance directive with their doctor, and nearly 60% had not selected a surrogate decision maker. 

Further, 85% of survey participants said they felt comfortable discussing end-of-life matters with their primary care provider but only 17% had.

In order to address this issue legally, some states have enacted “surrogate consent statutes,” which designate the individual or individuals who have the legal right to make medical decisions for a person who has no advance directive and cannot speak for themselves. 

Generally, surrogate consent laws fall into two categories: hierarchy surrogate consent laws and consensus surrogate consent laws. Most states that have enacted such laws have chosen to impose a hierarchical consent scheme with family members named in a descending order, which is generally the following:

• A spouse
• An adult child 
• A parent
• An adult sibling

Some states also include nieces and nephews, grandchildren, aunts and uncles and — in some cases — any living relative. In other states, a “close friend” may be authorized to make decisions, though their input may carry less weight than next-of-kin. 

It is important to be aware, however, that these laws are not consistent across the U.S., and many statutes impose limitations on the decisions that these default surrogates can make. Further, state laws can change frequently, and it is difficult for the average person to keep track of changes in real time. Therefore, it is vital that every person over the age of 18 have a written advance directive that designates a healthcare surrogate whom they trust to make medical decisions on their behalf. 

Sources

“Advance Care Planning and Advance Directives”. Cleveland Clinic. https://my.clevelandclinic.org/patients/information/medical-decisions-guide/advance-directives 

“Recent Updates to Default Surrogate Statutes”. American Bar Association. https://www.americanbar.org/groups/law_aging/publications/bifocal/vol44/bifocal-vol-44-issue3/recent-updates-to-default-surrogate-statutes/ 

Although the Five Wishes Advance Directive has many advantageous features, some legal experts consider it legally ambiguous due to several unclear or contradictory instructions in the document. Among these are the following: 

• The document allows the person making the declaration to designate a healthcare agent (proxy) to make decisions about their care should they be unable to speak for themselves. Legally, this person is granted broad decision-making powers due to the complex and ever-changing medical needs of a person who is critically ill. They can, for example, consent to or decline specific medical interventions such as intubation or dialysis, authorize admission to the hospital or ICU, or authorize a “do not resuscitate” order on the patient’s behalf. However, the Five Wishes document instructs the person preparing the document to “cross out anything you don’t want your agent to do,” then lists a wide array of decisions that are often essential to achieving treatment goals. These include:
• Making choices about medications, surgeries and medical tests
• Interpreting or clarifying the patient’s instructions for healthcare providers
• Consenting to admission to the hospital
• Authorizing or refusing to authorize medication for pain

If the maker of the directive crosses any of these items out, the healthcare proxy, in many instances, would be prevented from fulfilling their obligation to make decisions on the patient’s behalf.

• The document allows the person making the declaration to choose whether they want aggressive life-sustaining  treatment in certain medical circumstances, specifically:
• If the person is in a coma and not expected to wake up
• If the person is close to death
• If the person has sustained severe and likely permanent brain damage
• Any other condition the person specifies

However, legal experts have pointed out that the document’s creator can unintentionally make requests for treatment or no treatment that conflict. For example, suppose the document says the person does not want life support treatment if they have sustained severe and permanent brain damage. However, they do want life support if they are “close to death.” If the patient is both seriously brain damaged and close to death, which instruction should providers follow, and which should they ignore? 

• Perhaps the most troublesome contradiction in the Five Wishes document is contained in Wish 2. This section allows the patient to specify what “life support” means to them and what care they do or do not want in that regard. Examples of treatments the person can consent to or decline include interventions such as a breathing tube and mechanical ventilation (respiratory support), intravenous fluids (artificial hydration), tube feedings (artificial nutrition), blood transfusions etc. 

At first glance, it appears evident that if the person making the declaration declines life-prolonging options (for example, a breathing tube if they can’t breathe effectively on their own), they are choosing an option that is likely to result in death. However, at the top of Wish 2, the document reads, “I do not want anything done or omitted by my doctors or nurses with the intention of taking my life.” This statement directly contradicts any instruction to withhold life support, since doing so is by definition an intentional act that will almost certainly result in the patient’s death. Because of this contradictory statement, providers could be extremely limited in their ability to avoid instituting life-saving measures regardless of what the instructions in the directive say. 

Due to this ambiguity, many legal experts agree that the Five Wishes document should guide conversations about end-of-life planning and treatment goals but not replace a statutory advance directive for healthcare or living will. While statutory forms do not cover the scope of the issues included in Five Wishes, the two documents used together can be very effective at providing your healthcare team and your next of kin the information they need to care for you according to your values and wishes if you are unable to speak for yourself. 

Sources

“”Five Wishes” — Sounds good but legally dangerous”. Law Professor Blogs. https://lawprofessors.typepad.com/trusts_estates_prof/2009/06/in-be-careful-what-you-wish-for-analyzing-the-five-wishes-advance-directive-97-ill-b-j-242-2009-ray-j-koenig-iii-p.html 

“Be careful what you wish for: analyzing the “Five Wishes” advance directive”. The Free Library. https://www.thefreelibrary.com/Be+careful+what+you+wish+for%3a+analyzing+the+%22Five+Wishes%22+advance…-a0199989723 

The Five Wishes Advance Directive is not free. As of this writing, a paper copy of the document with instructions costs $5, and a digital copy, which allows for unlimited revisions, is $15. The organization also offers a number of conversation guides for an additional fee. These include a:

• Conversation Guide for Individuals & Families — $5
• Conversation Guide for Clinicians — $10
• Physician’s Toolkit — $15
• Five Wishes Starter Kit — $25.

In addition to the standard Five Wishes document, which is appropriate for adults, Five Wishes also offers two guides for children. One, designed for younger children, is titled “My Wishes.” The second,“Voicing My Choices” was developed for teenagers and young adults. These guides are $5 each. 

Lastly, Five Wishes offers a guide for Catholics who wish to use the Five Wishes advance directive titled Finishing Life Faithfully. At a cost of $8,  it is intended for use as a guide to making end-of-life decisions that are consistent with the Church’s teachings and does not include the Five Wishes document. 

Sources

“Finishing Life Faithfully”. Five Wishes. https://store.fivewishes.org/ShopLocal/en/p/GUIDE-FLF-000/finishing-life-faithfully

Addressing the issue of dementia in an advance directive is an increasingly important priority for many seniors. With the number of Americans living with Alzheimer’s disease and other forms of dementia increasing every year, many people fear the loss of control over medical decision-making that a dementia diagnosis brings. To address this concern, the end-of-life advocacy organization Compassion & Choices has created a Dementia Values and Priorities Tool that allows you to identify and communicate to loved ones what you would like to happen in the event you are experiencing advanced dementia and can no longer speak for yourself. The answers you provide are digitally transferred to a Dementia Healthcare Directive Addendum that includes specific instructions for your medical providers, healthcare facilities and family. The document begins with the following statement:

I ______ am completing this document because I want my surrogate decision maker(s), physicians and health care team, family, caregivers and loved ones to know my wishes regarding the type of care I want if I am living with dementia.

The Dementia Values and Priorities tool is accessible both as a printable form available for download and an online version. The interactive online version of the tool is the only one of its kind and provides you with a document that can be included with your current advance directive. It is available in multiple languages and also includes key terms with videos to provide more detailed information about important concepts such as “artificial hydration” and “comfort care.”

In addition to the form created by Compassion & Choices, there are a growing number of similar tools available that allow you to outline the kind of care you would like or not like in a variety of circumstances. The Dementia Advance Directive created by End of Life Choices New York, for example, specifically addresses the institution of assisted feeding in a person with advanced dementia. Another option is the Advance Directive for Dementia created by Dr. Barak Gaster of the University of Washington Medical Center, which goes into much more detail about the kind of care you would want if you had mild, moderate or severe dementia. We recommend that you review each of these and make a choice as to which one is best suited to your needs.

Sources

“Dementia Advance Directive”. End of Life Choices New York. https://endoflifechoicesny.org/directives/dementia-directive/ 

“Advance Directive for Dementia”. https://dementia-directive.org/ 

“Dementia Values and Priorities Tool”. Compassion & Choices. https://compassionandchoices.org/dementia-values-tool/ 

“Alzheimer’s Disease Facts and Figures”. Alzheimer’s Association. https://www.alz.org/alzheimers-dementia/facts-figures

Beginning a discussion about end of life with someone who is experiencing cognitive decline can be very challenging. If the person is in the early stages of Alzheimer’s disease or dementia, they may not be aware of the changes or think the discussion is premature. If they are in the middle stages of the disease, they may have limited ability to express their thoughts and ideas and may have lost the ability to make informed decisions. In any event, the longer you wait to address the issue, the more challenging it will become. 

Although there is no “right” or “wrong” way to talk with your loved one, The Conversation Project offers some simple, easy-to-follow guidelines that may help you proceed. You can read them in their entirety in the Conversation Starter Kit for Families and Loved Ones of People with Alzheimer’s Disease or Other Forms of Dementia, but here are a few of the most salient points. 

• Be gentle. If your loved one has recently been told they have Alzheimer’s disease or dementia, they may be frightened of what the future holds. Due to the loss of insight and empathy that often accompanies dementia, they may resist any attempt to talk about what they want. One way to address this is to acknowledge that everyone is afraid to talk about death, including you. Then start the conversation by talking about what you want when you’re approaching the end of your life. “I don’t like to think about it, but when I do, I think I would like…” This may encourage your loved one to share their thoughts as well. 
• Focus on values. Rather than focusing on specific end-of-life measures, try to center your conversation around what is most important in your loved one’s life. What is most important to them? Do they love to eat? If so, you might ask what they would want to happen if they could no longer feed themselves or swallow solid food. Is family interaction paramount? If so, would they want to be kept alive with aggressive measures if they no longer recognized who their family was? These are hard questions, but framing them in the context of values can make them easier to ask.
• Keep it simple. People who are experiencing cognitive decline usually do best when information is presented or discussions occur in small bites. Bring up what’s most important first, which is who they would like to make decisions for them if they can’t speak for themselves. You may wish to make suggestions rather than ask them to come up with a name on their own. “Aunt Gin and you are very close. Do you think she would be a good person to tell the doctor what you want?”
• Break things up. You don’t have to address every aspect of end-of-life decision-making all at once. Let your loved one guide you — when they no longer seem engaged in the conversation, let it go for a while.
• Be prepared to go over things more than once. Even people who have no cognitive deficits tend to forget parts of important conversations. For people with dementia, this is especially true. Start each new conversation with a short review of what was discussed before. “Remember, yesterday we talked about…” You may need to refresh their memory more than once. 
• Use cues from the past. A person with dementia may retain some long-term memory, so it may help to bring up situations from the past. For example, if you are trying to have a discussion about aggressive end-of-life interventions, you might bring up someone in your family who had a prolonged or difficult death. “Remember when Dad was in the ICU and how hard it was on Mom and us?”
• Be persistent. Your loved one’s cognitive and emotional state will vary from day to day. If they are particularly resistant to having a conversation about their end-of-life wishes now, remind yourself that tomorrow is another day and resolve to try again.
  

Sources

“Your Conversation Starter Guide: For Caregivers of People with Alzheimer’s or Other Forms of Dementia”. The Conversation Project. https://theconversationproject.org/wp-content/uploads/2016/05/TCP_StarterKit_Alzheimers.pdf

There is no guarantee that doctors or the legal system will honor any advance directive, especially one that addresses dementia. A Dementia Directive is intended to document your wishes and preferences for life with dementia and to assist the healthcare team and loved ones in making decisions that align with what you want. To be valid, it must be completed while you have decision-making capacity, so that might be in advance of a diagnosis or early in the disease process. People choose to fill out a dementia directive because loss of decision making capacity is something they are concerned about. 

However, because the dementia directive is made well in advance of you actually experiencing severe cognitive decline, issues can arise that make it difficult to implement what the directive says. Nevertheless, there are some strategies that can help ensure that a dementia directive is honored when health care decisions must be made. 

Specificity Is Key

If you are completing an advance directive to prevent certain medical interventions should you develop advanced dementia, start with the assumption that there will be challenges to its validity. Thus far, none of the standardized directives that address these kinds of issues for people with dementia have been reviewed in a court of law, and the organizations that created them (e.g., Compassion & Choices, End of Life Choices of New York) freely admit that there is no way to ensure that those with the power to do so (doctors, administrators or the courts) will comply with your wishes. In fact, the courts have historically been extremely reluctant to allow physicians to stop interventions such as assisted feedings, and some families who have tried to do so have been threatened with charges of elder abuse. 

Although no directive is foolproof, one way to try to preemptively overcome the challenges to your advance directive is to be very specific in your instructions and the conditions under which they should be carried out. A court in the Netherlands refused to honor a woman’s instructions to stop assisted feeding because her directive did not specify “oral” feedings, so a judge made a determination that she only wanted to avoid being fed by a tube. Even some standardized tools are similarly ambiguous.

Similarly, many advance directives fail to specify what conditions must be met for the directive to go into effect. Vague statements such as “I am very ill and unlikely to recover” leave too much room for interpretation and can easily be ignored. It is far better to identify specific scenarios (e.g., “I no longer recognize my loved ones;” or “I am agitated and upset most of the time and my caregivers can’t help me to calm down”). The Dementia Values and Priorities Tool created by Compassion & Choices is a very good example of the kind of specific behaviors and conditions your advance directive should address. 

With that being said, there are currently no laws in any state that fully protect a person’s right to determine their own destiny in advance of developing dementia. And, as experts point out, it is unlikely that such laws will be enacted anytime soon. The ethical and moral question of when a person’s suffering is “bad enough” to warrant withholding certain medical treatments is extremely individual and will likely always be a matter of debate. 

Nonetheless, if you are concerned about dementia and would like to try to make your wishes known in advance, make sure your advance directive is clear and specific and– most importantly — that your healthcare team and surrogate decision makers are aware of what you do and do not want. 

Sources 

“Dementia Values and Priorities Tool”. Compassion & Choices. https://compassionandchoices.org/dementia-values-tool/

A psychiatric advance directive is a legal document that outlines the care you do and do not wish to receive if you experience a severe mental health crisis and are unable to accurately communicate your treatment goals. If you are living with a serious mental illness, the psychiatric advance directive – also known as a mental health directive – allows you to communicate your treatment preferences while you are well and have the capacity to make informed decisions. Instructions may include information about:

• Which hospitals you wish to be treated at and which you want to avoid
• What medications have worked for you in the past
• What medications do not work or cause unmanageable side effects
• The names and contact information of friends, family and/or health care providers you trust
• The names of people you do not want to visit if you are hospitalized
• Consent to or refusal of electroconvulsive therapy (ECT)
• Possible causes of your mental health crisis (e.g. what triggered crises in the past)
• Ways to help you avoid hospitalization

As with any other healthcare directive, you may also include a healthcare power of attorney that designates who your surrogate decision maker or HEALTHCARE PROXY will be. That person will have the legal right to make decisions about your care if the healthcare team treating you determines that you lack the capacity to give informed consent. 

Notably, the instructions in a psychiatric advance directive DO NOT supersede the medical judgment of a treating physician and cannot prevent involuntary hospitalization if a qualified healthcare provider certifies that it is warranted. 

Goals of Psychiatric Advance Directives

The goal of a psychiatric advance directive is to bolster autonomy for people who live with a serious mental illness and facilitate shared decision making between those patients and the healthcare team. Historically, people who are experiencing an acute mental health crisis have been subjected to numerous coercive measures, including involuntary hospitalization, chemical restraint and treatment with various psychoactive drugs. And while these interventions are often necessary in the short term to keep the patient and those around them safe, their routine use has, in many cases, created an adversarial relationship between psychiatric patients and their caregivers. A psychiatric advance directive can help minimize the use of coercive measures and, according to several studies, improve patient outcomes such as symptom severity, feelings of empowerment, therapeutic alliance and rates of recovery. 

Creating a Psychiatric Advance Directive

As of this writing, most states in the U.S. allow for some form of advance directive for mental health care, although many only provide statutory forms for the appointment of a power of attorney for mental health care. Whenever possible, it’s best to use the forms provided by the state to help ensure that your directive will be honored when you are in crisis and cannot advocate for yourself. You will also need to comply with your state’s requirements around formalizing the document. For example, some states require the signatures of one or two witnesses while others mandate that the directive be notarized. To learn what is required in your state, refer to this state-by-state guide provided by the National Resource Center for Psychiatric Advance Directives. 

Regardless of whether your state has enacted a law around psychiatric advance directives, many experts in the field of mental health advocate for their use.  Thus, if your state does not provide a form that allows you to delineate your care preferences, you can design one yourself and attach it to your advance directive for healthcare or living will. This series of five short videos from the National Resource Center for Psychiatric Advance Directives provides step-by- step guidance on how to design a psychiatric advance directive that communicates your past experiences with mental health crises, as well as your personal preferences and treatment goals. 

Limitations of Psychiatric Advance Directives

Like all advance directives, psychiatric advance directives have operational limitations, such as the inability of first responders to locate the directive when a health crisis occurs. To minimize the chances of this occurring, make sure that your surrogate decision makers, your treating physician and your next of kin have a copy of your directive and that you keep those copies up to date. Unlike a general advance directive for healthcare, a psychiatric advance may need to be updated quite frequently as your mental health and treatment preferences evolve. 

Another major limitation of psychiatric advance directives is the inability of many persons with severe, chronic mental illness to understand the concept of a mental health directive or locate resources to assist them in completing one. This is especially true of patients who have had repeated interactions with the mental health care system and been subjected to multiple coercive interventions, such as involuntary hospitalization, restraint and seclusion. Having already lost faith in the system’s desire to preserve their autonomy, these patients may see little purpose in creating a document that will most likely be ignored. 

Still another limitation of psychiatric advance directives is the reluctance of care providers to honor them. When one considers that most interactions between the healthcare team and people experiencing a mental health crisis occur in the emergency room, this is hardly a surprise. Doctors and nurses confronted with a combative, hallucinating, or delusional patient are unlikely to take the time to look for a directive before instituting care. Nonetheless, once the crisis has been managed and the patient’s safety ensured, a psychiatric advance directive can help guide treatment decisions around future care. 

Summary

In summary, a psychiatric advance directive is a legal document that, if properly executed, may help persons living with a serious mental illness avoid involuntary hospitalizations and unwanted, ineffective or possibly harmful care. Although their use is not currently widespread, many policymakers and mental health providers advocate for their use. If you or a loved one suffers from a severe mental illness, it may be worthwhile to learn more about this potentially useful tool. Contact the National Resource Center for Psychiatric Advance Directives for additional information and helpful resources. 

If you or someone you know is in crisis, call or text 988 or chat at with 988lifeline.org. You may also contact SAMHSA’s National Helpline

24/7 to obtain free, confidential help.

• Call: 1-800-662-4357
• TTY: 1-800-487-4889
• Text your ZIP code to: 435748
• Visit SAMHSA’s National Helpline

Sources

“What Is an Example of Chemical Restraint?” MedicineNet. https://www.medicinenet.com/what_is_an_example_of_chemical_restraint/article.htm 

“A Practical Guide to Psychiatric Advance Directives”. SAMHSA. https://library.samhsa.gov/sites/default/files/psychiatric-advance-directives-pep19-pl-guide-4.pdf 

“The Therapeutic Alliance: The Fundamental Element of Psychotherapy”. Psychiatry Online. https://psychiatryonline.org/doi/10.1176/appi.focus.20180022 

“Psychiatric Advance Directives”. Mental Health America. https://mhanational.org/position-statements/psychiatric-advance-directives/ 

“Creating a Psychiatric Directive”. National Resource Center on Psychiatric Advance Directives. https://nrc-pad.org/creating-a-psychiatric-directive/

Yes, Medicare began covering advance care planning as a separate service on Jan. 1, 2016. This means that your doctor or other healthcare provider can now be reimbursed for talking with you about your wishes regarding the end of life. During these discussions, your doctor can provide you with information about end-of-life options, such as hospice and palliative care. He or she can also help you determine what options are best suited to your individual needs and wants and help you share your end-of-life wishes with your family and friends. 

For some patients, this conversation can be accomplished in one visit. But most people will need several visits to clarify their goals and develop a cohesive end-of-life care plan. Medicare does not limit the number of visits you may have, but there may be cost-sharing involved.

Before meeting with your doctor, it’s important to think about what you want to accomplish in advance. For example, do you want to discuss specific end-of-life options, such as hospice, palliative care, medical aid in dying or voluntarily stopping eating and drinking? Do you want to clarify your diagnosis and/or prognosis and talk about goals of care? Remember, you don’t have to have a terminal illness to talk about these things. In fact, the ideal time to have the conversation is before you are seriously ill. 

After you’ve thought about your goals, formulate some questions, and be as specific as you can. Here are some suggestions that may be helpful. Feel free to tailor them to your situation and your needs.

• What can I expect from this illness? What is my life expectancy with treatment or with comfort care?
• What kind of symptoms can I expect, and how soon?
• Can I continue to work? For how long?
• Will I need someone to care for me? When?
• Will I be able to stay in my own home? What equipment might I need?
• Can you refer me to hospice? If not now, when? 
• Can I get a palliative care consultation?
• Will you write a POLST for me? An out-of-hospital DNR?
• Are you comfortable working with me if I choose any of these options? (Explore these individually.)
  • Medical aid in dying
  • Voluntarily stopping eating and drinking
  • Palliative sedation 
• If not, will you refer me to someone who will? 

Be prepared for the possibility that your doctor may be uncomfortable discussing some of these issues with you or may resort to medical jargon that is difficult for you to understand. Be polite but persistent. If the doctor seems to be evading your questions, tell them these issues are important to you and you need to discuss them openly so you can plan your life. If they use words you don’t understand, ask them to explain them in a way that’s clear. Remember, this can be one of many discussions. There’s no need to rush. 

It may also be helpful to bring someone with you, such as a partner, spouse, trusted friend or healthcare surrogate, to these appointments to serve as a second set of ears. Discussions about end of life can be stressful, and it is not uncommon for people under stress to have trouble recalling details of what occurred. The other person can also take notes and ask questions about issues that may be unclear. 

Discussions about end-of-life care and end-of-life decision-making can be intimidating. Few are comfortable talking openly about what will happen if they become seriously ill. However, talking to your doctor and asking appropriate questions is the best and the only way to fully understand your choices and develop a plan for care that aligns with your wishes and values. To that end, these are some crucial questions you should ask your healthcare provider about end-of-life care:

What is my diagnosis?

Before making any decisions about your care, knowing your diagnosis and what it means is essential. Questions that may help clarify the information include:

• How is this diagnosis causing my symptoms? 
• Are more tests needed to confirm the diagnosis?
• How soon will we have a definitive answer?
• Is this a life-limiting condition?

What is my prognosis?

Knowing what you can expect as your disease progresses can help you prepare physically, emotionally and financially for what’s to come. Your provider cannot predict the future, and disease progression can vary from one individual to another. However, your doctor can give you some general parameters that can help guide your decisions in the near and long term. Some specific issues to address include:

• How long can I reasonably be expected to live? 
• What might my long-term care needs look like? 
• Will I be in pain? What can we do to control it if I am?
• What other symptoms can I expect? How will I manage them?

What treatment is available?

Medical treatments for many serious illnesses are improving almost day by day. So, it’s essential to ask your provider what is currently available and what treatments or medications may be available in the short term. Some other important areas to discuss include:

• What kind of treatments are available for my condition? Which do you recommend?
• What are the expected side effects of this treatment, and how will we manage them? 
• What can I expect from this treatment regarding improved or diminished quality of life?
• What are the best outcomes you have seen with this treatment? The worst?
• What are some possible alternatives if I decide not to go with the recommended treatment plan? 
• What if I do not want to pursue treatments but instead want to focus on symptom management and quality of life?
• If I need surgery, how long will the anticipated recovery period be? 
• If I undergo the recommended treatment, how will it impact my ability to work for a living and care for myself and my family? 

What to do next?

Once you’ve discussed your diagnosis and expected disease trajectory with your provider, it’s crucial to identify the next steps. In addition to treatment decisions, you will likely need to make plans for your personal and professional life. Some questions you may want to consider include:

• Will I need to take time off from work?
• Will I be able to continue to meet my responsibilities at home (e.g., childcare, grocery shopping, preparing meals)?
• Is it likely that I will need the assistance of family members or paid caregivers?
• Should I have a POLST? 
• Should I have an out-of-hospital DNR?
• Should I consider enrolling in hospice or palliative care?

Additionally, this is an ideal time to review and update your advance directive (or create one if you’ve not already done so) and discuss your treatment goals with your healthcare surrogate and loved ones. Make sure your healthcare provider and surrogate decision maker(s) have a copy of the most up-to-date version of your advance directive and that it is on file in your medical record as well.

Advance care planning is a process to discuss and plan for future medical care. It involves identifying personal preferences, naming them in legal documents, and discussing them with loved ones, care partners, and healthcare professionals. Advance care planning had a greater focus on advance directives decades ago, but it has since broadened to help individuals build the skills necessary to identify what is needed to maintain their quality of life if they become severely ill or unable to communicate their needs.

Although people often think that advance care planning is a period of preparation that only occurs once in someone’s lifetime, it is intended to be a continual process that evolves throughout a lifetime. Since preferences can change over time and are often influenced by other factors such as religion or personal experiences, the advance care plan is meant to reflect any shifts in preferences. Most people are encouraged to revisit and update their advance care plan as significant changes occur throughout their lives or at least once yearly. 

Advance care planning has been shown to have many benefits:

• Promotes open conversation about personal values and healthcare preferences
• Reduces the chances of receiving unwanted medical treatments
• Supports improved quality of life
• Provides clarity for family and loved ones, reducing potential conflict and stress
• Ensures people have the necessary information to make an informed decision that aligns with the values of a loved one who cannot speak for themselves. 
• Promotes open conversations about healthcare preferences that might not otherwise occur 
• In a healthcare setting, an advance care plan can reduce the chances of receiving unwanted selecting medical treatments It can also help reduce conflict among family members over differing opinions regarding whether to continue or withdraw treatment.
•  Finally, advance care planning enables individuals to maintain and exercise their autonomy by handling their healthcare 

Sources

“Advance Care Planning: What Is It and When Should It Be Done?” National Council on Aging. https://www.ncoa.org/article/advance-care-planning-what-is-it-and-when-should-it-be-done/

“What is ACP?” UCLA Health. https://www.uclahealth.org/programs/advance-care-planning/what-acp 

“Advance Care Planning: Advance Directives for Health Care”. National Institute on Aging. https://www.nia.nih.gov/health/advance-care-planning/advance-care-planning-advance-directives-health-car 

“Advance Care Plans and the Potentially Conflicting Interests of Bedside Patient Agents: A Thematic Analysis”. National Library of Medicine. https://pmc.ncbi.nlm.nih.gov/articles/PMC8354728/ 

“Advance Care Plans and the Potentially Conflicting Interests of Bedside Patient Agents: A Thematic Analysis”. Journal of Multidisciplinary Healthcare. https://pmc.ncbi.nlm.nih.gov/articles/PMC8354728/ 

The Five Wishes advance directive for healthcare is recognized in all 50 states. However, as of this writing, four states (New Hampshire, Kansas, Ohio and Texas) mandate an additional step in order to execute your directive legally. Below is a summary of these requirements:

• New Hampshire: In addition to the Five Wishes form, anyone who wishes to create an advance directive must use the statutory form and specific language supplied by the state. The form and instructions can be accessed online as a pdf or you may ask your healthcare provider for a copy of the form. 

• Texas: Texas law requires that an advance directive for healthcare and medical power of attorney be executed using statutory forms supplied by the state. You may attach the Five Wishes document to the state-mandated form if you wish. Below are links to the pdf versions of the various statutory forms:
  • Directive to Physicians and Surrogates (Living Will)
  • Medical Power of Attorney (designation of healthcare agent or surrogate)
  • Out of Hospital Do Not Resuscitate Order
    

Additionally, Texas, along with about half of the states, has adopted a psychiatric advance directive. Unlike an advance directive that covers end-of-life scenarios, this declaration allows individuals with serious mental health conditions to state their wishes about medical care and hospitalization before a crisis occurs.

• Kansas: Like New Hampshire and Texas, Kansas requires you to use the statutory declaration prepared by the state to document your wishes about life-sustaining treatments and designate a healthcare surrogate. 
• Ohio: Like the other states mentioned above, Ohio requires you to use a state-approved form and language to document your wishes regarding medical care and who can authorize treatments if you cannot do so yourself. The form is available online in pdf format or you may ask your healthcare provider to supply you with one. 
  

Sources

“New Hampshire Advance Directive: Planning for Important Healthcare Decisions”. CaringInfo. https://www.caringinfo.org/wp-content/uploads/NewHampshire.pdf 

“State by State Info”. National Resource Center on Psychiatric Advance Directives. https://nrc-pad.org/states/ 

“Kansas Advance Directive: Planning for Important Healthcare Decisions”. CaringInfo. https://www.caringinfo.org/wp-content/uploads/Kansas.pdf 

The responsibility for making sure an advanced directive is followed is shared by healthcare providers, institutions, and designated healthcare agents. Since healthcare providers are largely responsible for the delivery of care, they have an obligation to honor the requests indicated in an individual’s advance directive. As an example, if the patient’s advance directive indicates that they do not want to receive life-sustaining treatments, the healthcare provider should respect the patient’s autonomy and honor the request as it is outlined in the documents. 

Healthcare institutions have a different level of responsibility in ensuring advance directives are followed. Institutions have the ability to implement specific processes to maintain accurate documentation regarding advance directives and empower healthcare providers or other staff to ensure that directives are upheld. This can involve providing additional training regarding the content and purpose of advance directives, ensuring directives are easily accessible in patient records, and coordinating additional support or communication to ensure directives are acted upon appropriately. 

Healthcare agents handle the necessary communication and decision-making on behalf of the patient. It is important for healthcare agents to understand the requests and instructions that have been provided in the advance directive so that they can explain these decisions and the reasons behind them if asked. The healthcare agent has the authority to make decisions, but also holds the responsibility of ensuring that those decisions honor the patient’s preferences. 

In an ideal situation, all three of these entities work collaboratively to adhere to the indications provided in advance directives. If one entity ignores the advance directive or does not follow it appropriately, another entity should acknowledge this and establish accountability to ensure that the patient’s requests are maintained and honored. Ensuring that everyone is aware of the advance directive and the actions that need to be taken can ultimately reduce the risk of unnecessary delays, violations, or interpersonal conflict regarding final decisions. 

Sources

“Advance Care Planning: Advance Directives for Health Care”. National Institute on Aging. https://www.nia.nih.gov/health/advance-care-planning/advance-care-planning-advance-directives-health-care 

“Health care agents”. MedlinePlus. https://medlineplus.gov/ency/patientinstructions/000469.htm 

Several common misconceptions exist around advance directives. Addressing these misconceptions is crucial since it ultimately promotes awareness about advance directives and the importance of maintaining updated documents. Some of the most common misconceptions about advance directives include: 

• They are useful only for older adults and individuals with serious illnesses
• They limit autonomy and decision-making abilities
• All indicated preferences and decisions are permanent 
• They are too complicated to create and maintain 
• They do not need to be updated regularly 
• They should be put away in a secure location where no one else can find them
• The paperwork must be done with a lawyer
• Creating an advance directive makes discussion with loved ones unnecessary

Many individuals choose not to create an advance directive due to the belief that they don’t need one. The misconception that an advance directive is only relevant to older individuals and those who have chronic or life-limiting conditions often prevents younger and healthier individuals from creating one. The reality is that medical emergencies can happen at any time and often occur when they are least anticipated. Having an advance directive is an excellent way to be proactive about outlining care that aligns with personal values and preferences. 

Sometimes individuals don’t want to create an advance directive because they believe it will cause them to lose the ability to make important decisions about care they may receive in the future. However, as long as that individual can make informed decisions on their own, instructions in the advance directive do not go into effect. Further, a healthcare agent or surrogate can make decisions only when a person cannot speak for themselves. 

Another common misconception is that once advance directives have been created, they are permanent and cannot be changed or revoked. In truth, an individual can change their advance directive whenever they deem it necessary, and is encouraged to update their advance directives whenever a major life event or change in health occurs. Additionally, advance directives are very easy to create and establish. It doesn’t require working with a legal advisor. Most people can complete advance directives independently. 

Finally, once advance directives are created, it’s essential to discuss them in detail with the healthcare team, as well as with family and loved ones. While these documents should provide clear instructions regarding the actions to take if someone is unable to make their own healthcare decisions, it is crucial to discuss these preferences with family, loved ones, and the named health care agent to ensure that they fully understand what has been requested and how they can honor these requests. As with any other aspect of advance care planning, maintaining open and transparent communication is essential to ensure the provision of care that is sensitive to the individual’s needs and values. 

Sources

“Five Myths About Advance Care Planning”. National Institute on Aging. https://www.nia.nih.gov/health/advance-care-planning/five-myths-about-advance-care-planning 

“Myths & Facts about Advance Care Planning”. UCLA Health. https://www.uclahealth.org/programs/advance-care-planning/resources/myths-facts 

In addition to an advance directive and a durable power of attorney for health care, people who are living with a serious or terminal illness or who are very elderly and/or medically frail may choose to work with their healthcare provider to create a document known as POLST. An acronym for Physician’s Order for Life-Sustaining Treatment, POLST refers to a legally binding set of medical orders that spells out a person’s wishes regarding specific measures that might be used to artificially sustain life. The document is designed to improve patient care by providing a clear means of communicating end-of-life wishes to first responders and emergency medical personnel. It does not replace an advance healthcare directive and/or durable power of attorney for health care.

Unlike a living will or advance healthcare directive, which is a legal document intended to give direction to a healthcare surrogate, a POLST is a medical order written and signed by a qualified healthcare provider. State laws differ, but in most cases this may be a physician, an advanced practice nurse or a physician assistant. Emergency personnel and hospital staff are obligated to follow the instructions a POLST contains. However, in the absence of a POLST (or an out-of-hospital DNR), they are required to initiate resuscitation efforts when they are called to respond to an emergency. Similarly, hospital staff will generally continue high-intensity treatment until they locate the patient’s healthcare proxy or next of kin. 

When a healthcare provider signs a POLST, the order goes into effect immediately. It is also portable, so if the patient is transferred from one hospital to another, or from a hospital into a long-term care facility, the order will still be valid and doesn’t need to be written again. Patients who are living in the community should keep their POLST form in a highly visible place, such as taped to the refrigerator or the bedroom door or above the bed. Most POLST forms are brightly colored (in California they are pink) so they can easily be seen by emergency personnel. 

Although the specifics of each state’s POLST forms may vary somewhat, POLST generally addresses the following issues around life-sustaining care:

• Cardiopulmonary resuscitation (CPR)
  • Full treatment (requires the full-treatment medical interventions below)
  • No CPR
• Medical interventions
  • Full treatment: comfort care plus intubation, mechanical ventilation and cardioversion (electric shocks to restart the heart or convert abnormal heart rhythms)
  • Selective treatment: comfort care plus antibiotics, oxygen and intermittent positive pressure breathing, but no intubation or intensive care
  • Comfort-focused care: pain relief and manual assistance in breathing (for example, suctioning or positioning and oxygen)
• Artificial hydration and nutrition (including feeding tubes)
  • Short-term, long-term or none at all

According to National POLST, nearly all states have adopted the national POLST paradigm as of 2025,  but the specifics of the programs may vary from state to state. The acronyms used to describe the form may be different as well. According to the National POLST Paradigm, terms currently in use include:

• POLST (Physician Order for Life-Sustaining Treatment)
• POST (Physician Order for Scope of Treatment)
• MOLST (Medical Order for Life-Sustaining Treatment)
• MOST (Medical Order for Scope of Treatment)
• TPOPP (Transportable Physician Order for Patient Preferences)
• COLST (Clinician Order for Life-Sustaining Treatment)
• DMOST (Delaware Medical Order for Scope of Treatment)
• IPOST (Iowa Physician Order for Scope of Treatment)
• TOPP (Transportable Order for Patient Preferences)
• AzPOLST (Arizona Provider Order for Life-Sustaining Treatment)
• LaPOST (Louisiana Physician Order for Scope of Treatment)
• OkPOLST (Oklahoma Physician Order for Life-Sustaining Treatment)
• PAPOLST (Pennsylvania Order for Life-Sustaining Treatment)
• WyoPOLST (Wyoming Providers Order for Life-Sustaining Treatment)
• SAPO (State-Authorized Portable Order)
• SMOST (Summary of Physician Order for Scope of Treatment)

To learn the exact specifications for POLSTs in your state, visit this interactive map on POLST.org.

Sources

“Intermittent positive pressure breathing”. Physiopedia. https://www.physio-pedia.com/Intermittent_positive_pressure_breathing 

“National POLST Map.” National POLST. https://polst.org/programs-in-your-state/ 

As of this writing, there is no consistent policy across the U.S. regarding how to address a conflict between a person’s advance directive and POLST. In some states, the most recent document executed by the patient takes precedence, while in others the healthcare proxy designated in the advance directive can rescind or override a more recent POLST. Further, in most jurisdictions, a healthcare surrogate can request that a provider sign a POLST for a patient who is incapacitated or unable to make their wishes known. In theory, this document could contradict the patient’s advance directive if it were not available at the time. 

With that being said, most states attempt to preserve the right of the patient to make autonomous decisions and give precedence to the person’s wishes when those wishes are known. As in the case of the doctrine of “first person consent” for organ and tissue donation, the patient’s wishes are paramount and should not be overridden by the next of kin. Therefore, most providers will make every effort to determine what the patient would want. 

For example, if the patient’s advance directive clearly states “No CPR,” but the health care proxy wants “everything done,” it’s unlikely that the patient’s wishes would be ignored. On the other hand, if the person’s advance directive indicates they want doctors to do everything possible to save their life, a health care proxy might successfully override that wish with a POLST if the patient’s condition were to drastically change (for example, if a previously healthy 75-year-old person had a devastating stroke). 

This murky legal terrain highlights the importance of ongoing communication between the patient and surrogate decision-makers, including the health care proxy and next of kin. This is especially true for patients who are considering a POLST, for whom goals of care frequently change. 

Sources

“First Person Consent: OPOS across the country are adapting to the change”. United Network for Organ Sharing. https://unos.org/wp-content/uploads/unos/registires_combined.pdf

Choosing a health care proxy is an important decision. In addition to being over the age of 18 (as required in most states), the person you choose should be someone you trust to carry out your wishes even when they may not agree with them. For example, you would not want to appoint a health care proxy whose religious beliefs would prevent them from following your wishes at the end of your life (for example, terminating life support). Similarly, choosing someone with whom you have strong emotional ties, such as a spouse, a child or even a parent, may not be the best idea since their emotions could cloud their judgment when making difficult decisions about your medical care. 

Generally, the person you choose as your health care surrogate should be someone who knows you well and understands your values and core beliefs, such as a relative or a good friend. They should also have the following qualities:

• Calm in a crisis: If you are seriously ill, your condition may change minute by minute, so your surrogate should be someone who can make decisions quickly under stressful circumstances.  
• Comfortable advocating for you: Your surrogate should be someone you believe will be comfortable advocating for your values if your doctors propose a treatment course you would not want. 
• A good communicator: Your surrogate may need to act as a liaison between the medical team and your family and friends, so they should be someone who can facilitate difficult conversations with tact and empathy.
• Comfortable asking questions of medical staff 
• Live nearby or able to travel to you if needed

You may be tempted to ask several people to act as surrogates for you, but this is almost always a bad idea, warns Dr. Dawn Gross, a palliative care physician at UCSF Health. According to Gross, appointing more than one person can create conflict and additional stress at a time that demands clarity and calm. With that being said, you may wish to designate alternate surrogates (also known as successors), who can make decisions on your behalf if your first choice of surrogate isn’t available. Just be sure to clearly indicate which alternative is your first, second and even third choice. 

Sources

“About Your Host, Dr. Dawn Gross.” Dying to Talk Podcast. https://www.dyingtotalk.com/about-us 

After choosing a healthcare proxy, it’s important to talk with them about your wishes in a specific way. This can be challenging, especially if you are still relatively young and healthy and have little experience with being ill. We have found that one way to guide the conversation is to discuss your values, goals and fears. These values-based questions may help you begin. 

• What do you fear will happen if you can’t make decisions for yourself?
• Do you have any particular fears or concerns about the medical treatments that you might receive? 
• What are your views about artificial nutrition (food) and hydration (fluid)?
• How do you define quality of life? 
• What makes your life worth living? 
• What would you not want to live without? 

You may also want to talk about specific situations that might arise. For example:

• If you were badly burned in a fire, would you want to be kept alive by artificial means, even if you would be permanently scarred if you survived? 
• If you were unconscious from a severe head injury and unable to breathe on your own, would you want to be maintained on a ventilator in a skilled nursing facility for the rest of your life? 
• If you had a massive stroke and could no longer walk or speak, would you want doctors to try to prolong your life? 
• If you were living with dementia and could no longer swallow, would you want doctors to institute tube feedings to keep you hydrated and fed?

These are difficult issues to think about. But the more frankly you discuss them with your healthcare surrogate, the more likely it is that your wishes will be honored when you can’t communicate them yourself.

The decision to forgo life-sustaining treatment is rarely an easy one. No one wants to die, but for many people, the time comes when treatments are no longer effective, sustaining life through artificial means no longer makes sense or quality of life is poor. When this happens, it’s important to have a conversation with your doctor and your loved ones about your disease progression, your priorities and the goals of your medical care. It’s also important to acknowledge the reality that in many situations, CPR will not save your life but will simply prolong your death. 

According to Brigham and Women’s Faulkner Hospital, some situations where a DNR order would be appropriate include: 

• When CPR would provide no medical benefit. For example, CPR is unlikely to restore heart function or breathing in patients with widespread infections, advanced cancer, severe heart disease or other terminal illnesses.
• When CPR would damage the person’s quality of life. Especially in people who are very old and frail, CPR may be only partially successful. The person’s heartbeat may be restored, but they may have broken ribs, brain damage or be dependent on breathing support for the rest of their lives. 
• Death is expected soon. People who have a terminal illness and/or are approaching the end of life may wish to avoid aggressive medical care in favor of a natural death. 

In most cases, you, your family, and healthcare providers will agree when and if a DNR is appropriate. However, in rare cases, a doctor may disagree with your decision to forgo CPR. If this occurs, and there is no way to resolve the conflict through additional discussion, you may request that the doctor transfer your care to another provider. If the doctor refuses to do so, you or your family can then consult with a patient advocate, the hospital ombudsman or administrator and request that they resolve the dispute.   

Sources

“MOLST: Massachusetts Medical Orders for Life-Sustaining Treatment”. Brigham and Women’s Faulkner Hospital. https://www.brighamandwomensfaulkner.org/patients-and-families/advance-care-directives/molst

CPR is an acronym for cardiopulmonary resuscitation. According to MedlinePlus, it may include:

• Rescue breathing (to deliver oxygen to your lungs)*
• Chest compressions to pump blood from your heart to the rest of your body
• A breathing tube to keep the airway open
• Medications delivered intravenously, into a bone or directly into the heart
• Electric shocks to restore heart rhythm

*Note: In 2010, CPR guidelines for untrained laypersons were updated to indicate that compressions alone (without rescue breathing) could circulate the remaining oxygen in the bloodstream of a victim of sudden cardiac arrest. However, trained laypeople and healthcare providers will always initiate both rescue breathing and chest compressions for a person with no pulse.

CPR is a highly invasive procedure, and offers differing levels of success. Despite public perception, patients who suffer sudden cardiac arrest in the community (for example, at home or at work) have an overall survival rate of just over 10%, and only 8.3% survive with neurological function intact. Patients who experience cardiac arrest in a hospital setting fare somewhat better, with an overall survival rate of just under 25%. 

But overall survival rates can be very deceiving. For example, a 2014 study reported in Age and Ageing found that nearly 40% of elderly patients who received CPR in a hospital setting initially survived. (In other words, their hearts started beating again.) But more than half of those patients later died in the hospital without ever returning home. What’s more, a person’s chance of leaving the hospital after “successful” CPR decreased with age. Between the ages of 70 and 79, a person’s chance of being discharged was nearly 19%. This fell to 11% in patients who were 90 years old or older. 

Furthermore, even properly performed CPR can cause serious harm, the American Heart Association notes. Chest compressions may cause rib fractures and fractures of the sternum (the flat bone in the center of the chest). It may also lead to pneumothorax (free air in the chest cavity), hemothorax (bleeding in the chest cavity), bruising of lung tissue and lacerations of the liver and spleen. Fat emboli (particles of fat in the bloodstream that may lodge in the lungs, brain or heart) can also occur. What’s more, emergency protocols dictate that once CPR is started, providers must continue until a heartbeat is re-established or the person is obviously dead. Depending on the circumstances and setting, this can lead to prolonged efforts that some physicians liken to physical abuse.

Sources

“Do-not-resuscitate order”. MedlinePlus. https://medlineplus.gov/ency/patientinstructions/000473.htm 

“What Is Cardiac Arrest?”. National Heart, Lung, and Blood Institute. https://www.nhlbi.nih.gov/health/cardiac-arrest 

“AHA Releases 2015 Heart and Stroke Statistics”. Sudden Cardiac Arrest Foundation. https://www.sca-aware.org/sca-news/aha-releases-2015-heart-and-stroke-statistics 

“The chance of survival and the functional outcome after in-hospital cardiopulmonary resuscitation in older people: a systematic review”. Age and Ageing. https://academic.oup.com/ageing/article-abstract/43/4/456/2812217?redirectedFrom=fulltext

“Part 3: Adult Basic Life Support”. AHA Journals. https://www.ahajournals.org/doi/full/10.1161/circ.102.suppl_1.i-22 

“The Hidden Harms of CPR”. The New Yorker. https://www.newyorker.com/news/the-weekend-essay/the-hidden-harms-of-cpr

Despite the prevailing belief among many healthcare providers and policymakers that advance directives are a necessary part of end-of-life planning, their usefulness has become controversial in recent years. Since 1991, when Congress passed the Patient Self-Determination Act, all Americans over the age of 18 have been encouraged to create an advance directive to ensure that their wishes about medical decisions are honored when they cannot speak for themselves. But in the ensuing decades, problems with the implementation of these documents have been widespread –  so much so that many healthcare professionals question whether they do more harm than good. 

The biggest problem with Advance Directives, critics claim, is their very nature — that is, they are prepared well in advance of the kinds of healthcare crises they are created to address. Very few people have the knowledge and foresight to anticipate every kind of medical issue they may one day face or how much or how little treatment they might want to address each one. Although these decisions may seem cut and dried on paper, in the real world they are fraught with nuance, and even the most specific directives rarely address every scenario that may arise. This ambiguity is often complicated by the wishes of the next of kin, who often don’t know or disagree about what the patient’s wishes would be under the circumstances at hand. As Dr. Sean Morrison, a palliative care physician at Mt. Sinai in New York writes in an opinion piece titled “Advance Directives/Care Planning: Clear, Simple, and Wrong”

“Preferences that patients express when they are well or in hypothetical scenarios typically do not reflect the complexity, emotion, or interpersonal elements of real-time decision making. Adaptation to physical (and cognitive) disability, desire to live to see a future event (e.g., a wedding, bar mitzvah), or fear of death when the hypothetical becomes real, all can influence real-time decision making in a way that cannot be accounted for in advance.”

Hence, healthcare providers are often left to “read between the lines” or guess what the patient might actually want. 

Another factor complicating the effectiveness of advance directives is advancements in medical technology and pharmaceuticals. A person creating an advance directive today has no way of knowing what kind of life-extending or even curative measures might be available even a year from now. A decision to forgo life-sustaining treatment if they have a certain “terminal” condition such as cancer would make no sense if curative treatment for that condition is available at the time a health crisis occurs. Additionally, new treatments might become available that were unknown at the time the directive was made, leaving healthcare providers no way of knowing if those treatments are something the patient might want in real time. In these gray areas, physicians need to rely on their own judgment and that of surrogates, whose goals and values may or may not reflect those of the person who is ill. 

Other barriers to effective advance care planning are mostly operational. Some examples include:

• The patient created an advance directive, but no one in the family knows where it’s kept. 
• The person changed their advance directive several times but didn’t destroy the old copies, leaving providers confused about how to proceed
• The person named as the healthcare proxy objects to the instructions in the directive and/or claims the patient verbally told them they had changed their mind
• The directive is vague, ambiguous or contradictory 
• “Incompetent revocation,” in which a conscious patient in a questionable mental state verbally rescinds the instructions in the directive

In all of these scenarios, the healthcare team and surrogates may be left with more questions than answers, in which case, the advance directive can do more harm than good. 

Sources

“The Patient Self-Determination Act. A matter of life and death”. American Academy of Physician Assistants. https://pubmed.ncbi.nlm.nih.gov/10141946/

“Advance Directives/Care Planning: Clear, Simple, and Wrong”. Journal of Palliative Medicine. https://www.nationalacademies.org/documents/embed/link/LF2255DA3DD1C41C0A42D3BEF0989ACAECE3053A6A9B/file/D37FC8DBC5686185BFEE6670CFCB09E92EB378653DCF?noSaveAs=1

If someone does not have an advance directive or healthcare proxy, the state laws where they reside indicate who can make decisions on their behalf. The designated decision-maker can vary by state but typically includes one of the following:

• A spouse or domestic partner
• Adult children 
• Parents 
• Siblings or close relatives

Default surrogate consent and family consent laws, which define a list of permissible and prioritized surrogates, currently exist in 46 states and the District of Columbia. The lists indicate who can act as a surrogate if a patient doesn’t have an advance directive and who the next point of contact should be as a potential candidate if the initial surrogate is unavailable. For example, if a spouse is not available to act as a surrogate, an adult child would be the next potential surrogate to contact. 

If all of these individuals are inaccessible, providers must seek another alternative for decision-making. This situation can occur when the patient is homeless or has no family or friends to act as a surrogate. In this scenario, healthcare decisions may be directed to one of the following three entities:

• A court-appointed guardian or conservator
• An ethics committee 
• Physicians 

Based on this chain of contact, a variety of individuals and entities can make decisions on behalf of patients who do not have an advance directive or healthcare proxy. Ultimately, there will always be someone who can decide on a patient’s behalf when necessary. But it is important to recognize that these decisions may not align with the patient’s preferences or values without an advance directive or a surrogate decision-maker in place.

Sources

“Advance Care Planning: Advance Directives for Health Care”. National Institute on Aging. https://www.nia.nih.gov/health/advance-care-planning/advance-care-planning-advance-directives-health-care

“Advance Directives and Advance Care Planning: Legal and Policy Issues”. ASPE. https://aspe.hhs.gov/reports/advance-directives-advance-care-planning-legal-policy-issues-0 

“Recent Updates to Default Surrogate Statutes”. American Bar Association. https://www.americanbar.org/groups/law_aging/publications/bifocal/vol44/bifocal-vol-44-issue3/recent-updates-to-default-surrogate-statutes/#:~:text=As%20of%20December%202022%2C%2046,have%20default%20surrogate%20consent%20laws 

“Who Makes Decisions for Incapacitated Patients Who Have No Surrogate or Advance Directive?”. AMA Journal of Ethics. https://journalofethics.ama-assn.org/article/who-makes-decisions-incapacitated-patients-who-have-no-surrogate-or-advance-directive/2019-07 

It is possible for an advance directive to be overridden by family members and healthcare providers under certain circumstances. Advance directive violations can subject healthcare providers to serious consequences due to liability, but this does not always prevent them from overriding them. Common examples of scenarios involving advance directive overrides can include: 

• A family member selected as a surrogate decision maker makes a decision for care that conflicts or disregards what is stated in the advance directive
• The healthcare provider administered life-extending treatments that were forbidden in the directive 
• The medical team was unaware that an advance directive existed
• The healthcare provider believed it was in the patient’s best interest to ignore the instructions in the directive

Healthcare providers are discouraged from violating advance directives; however, they have the legal right to choose not to comply with the directive instead. If the healthcare provider does not comply, they are responsible for transferring the patient to another healthcare provider who will honor the patient’s wishes. 

Although medical teams generally make every effort to provide care that is aligned with patient wishes and values, mistakes and intentional violations can still happen. A study from 2020 found that 38% of patients with treatment-limiting Physician Orders for Life-Sustaining Treatment (POLSTs) received intensive care that was contradictory to their indicated preferences. 

If a family member is appointed as a health care agent, they are responsible for making decisions regarding their loved one’s care if they are incapacitated and unable to make decisions for themselves. The expectation is for the health care agent to make decisions that are aligned with the wishes that have been outlined in the advance directive. However, the agent may, at times, make decisions that conflict with an advance directive, especially one that is ambiguous or out-of-date. Due to the nature of the decisions being made, it is always best to carefully select a health care agent since they will have the most authority in making decisions in a life-or-death situation. 

Sources

“Can Family Overrule an Advance Directive? What You Need to Know”. Trustworthy. ​​ https://www.trustworthy.com/blog/can-family-overrule-an-advance-directive 

A do not resuscitate order is a doctor’s order that instructs healthcare personnel not to institute CPR if a patient’s heart or breathing stops. As a rule, it is considered appropriate only for patients who would not benefit or may actually be harmed by resuscitation, such as those who are terminally ill or very elderly and medically frail. 

Until recently, only one type of DNR order existed. However, some U.S. states have now instituted two levels of DNR: DNR Comfort Care and DNR Comfort Care-Arrest. Both have the goal of allowing a patient to refuse extraordinary life-saving measures but differ in important ways. 

• DNR Comfort Care is what may be viewed as a traditional DNR. It is appropriate for patients for whom CPR would likely not extend life and could result in significant harm. When a DNR Comfort Care order is in place, healthcare personnel, including EMS first responders, are required to provide any measures that could enhance the patient’s comfort, such as pain medicine or oxygen, but not to perform CPR or employ other extraordinary means to keep the person alive. 

• DNR Comfort Care-Arrest is an order that allows healthcare providers to institute life-saving measures until the point that a person’s heart or breathing stops. For example, a person experiencing a life-threatening infection might receive antibiotics, oxygen, and powerful medications to support their blood pressure. But if that person stopped breathing, they would not receive CPR. 

Additionally, some hospitals (for example, Ohio’s Cleveland Clinic) allow a physician to specify what resuscitative measures a patient should receive in the event of a cardiac arrest. For example, the DNR order might specify that providers can insert a breathing tube and institute CPR, but they are not to give electric shocks to restart the heart. If a patient wishes to be provided life-saving treatment but not have a breathing tube, this order is sometimes referred to as Do Not Intubate or DNI. 

Sources 

“Do-Not-Resuscitate (DNR)”. Cleveland Clinic. https://my.clevelandclinic.org/health/articles/8866-do-not-resuscitate-orders 

Advance directives can be challenged in a court under certain circumstances, although it doesn’t happen frequently. Ensuring advance directives are updated regularly and taking proactive precautions can significantly reduce the likelihood that the documents will be challenged. Common reasons why someone may challenge an advance directive include:

• The state of residence has changed 
• Documentation has not been properly witnessed
• The document is illegible 
• The person listed as an agent is disqualified 
• The person for whom the document is intended for cannot understand it 
• Some requests are outside of standard medical care

It is important to understand that while advance directives are legal documents, every state has its own requirements for what makes an advance directive valid. This means that while all requirements might be fulfilled in the state where the advance directive was originally issued, it may not meet the requirements if the individual moves to another state. This can affect factors such as the number of witnesses required for certain documents or even extend into a court case to determine whether the advance directive can be honored at all. 

Another factor that can be influenced by the state of residence is whether an agent is disqualified. Some states forbid individuals from social service agencies or medical facilities from acting as agents on behalf of the individual that the documentation is intended to represent. In these situations, a new agent would need to be appointed. 

Sometimes the requests and wishes in an advance directive may include components that are outside of the standard medical practice or common procedures. The healthcare provider may want to clarify what is being requested or whether the request can be honored if it differs from those standards. An enhanced document can help provide more insight into the request and can be completed with legal counsel and a healthcare provider. The healthcare provider will still have the right to refuse to comply with the request if they feel it is not appropriate or if they are not comfortable with being responsible for fulfilling it. 

All of the details in an advance directive must be clear and easy to understand. Advance directives can be dismissed or challenged if they are illegible or cannot be completely understood. Similarly, if the individual whom the document is intended to represent can’t understand the meaning or purpose of the forms, the advance directive could be challenged in court since it could be argued that they didn’t understand what they were agreeing to at the time. 

Ultimately, it is important for individuals creating advance directives to work closely with legal counsel or a patient advocate to ensure that their documents are completed and executed appropriately. Involving multiple advisors and professionals in the creation and decision-making process can help inform individuals regarding the details that need to be included to reduce the risk of potential challenges in court. Additionally, ensuring that loved ones and healthcare providers have the same shared understanding of the requests indicated in the advance directive can aid in preventing confusion. 

Sources

“Advance Directives”. Health in Aging. https://www.healthinaging.org/age-friendly-healthcare-you/care-what-matters-most/advance-directives#:~:text=They%20should%20be%20reevaluated%20and,be%20easily%20challenged%20in%20court. 

“Advance Directives FAQ – Everything You Need to Know”. TalkDeath. https://talkdeath.com/advance-directives-faq-everything-you-need-to-know/ 

Whether healthcare providers can be held liable for not following advance directives can vary depending on state laws and the circumstances surrounding patient care. Since advance directives are legally recognized documents, it is not uncommon for grieving families or loved ones to question the implications of liability or whether an advance directive can be challenged in court. However, the matter of liability often depends on a variety of factors. 

When a healthcare provider violates an advance directive, three substantial consequences are possible:

• The hospital where the patient received care may be penalized 
• The state medical board may discipline the healthcare provider 
• The healthcare provider and the hospital may be subject to medical malpractice liability

In a situation where an advance directive isn’t followed, it is crucial to understand the rationale behind the decision as well as the actions that were taken instead. Although advance directives are legally recognized documents, this does not necessarily mean that healthcare providers are required to follow them. For example, if the patient’s advance directive includes wishes that aren’t medically sound or may directly conflict with the healthcare provider’s conscience or ethics, they aren’t required to comply with its terms. 

If a healthcare provider chooses not to comply with a patient’s advance directive, they have an obligation to transfer or refer the patient to another healthcare provider that is willing to comply. The decision not to comply does not give the healthcare provider permission to violate the patient’s wishes in the advance directive by taking action without consent. The actions taken that violate the advance directive are typically where liability and medical malpractice become significant concerns. For example, lawsuits about advance directives have increased in recent years due to healthcare providers resuscitating patients to save their lives despite documentation indicating that patients didn’t want to be resuscitated.

It is important for patients and their healthcare providers to maintain clear communication regarding the patient’s end-of-life wishes and have accurate documentation that reflects any changes to those wishes. Healthcare providers must be aware of their legal and ethical boundaries, and likewise, patients must be aware of their ability to transfer to another healthcare provider that can honor their requests. Ultimately, liability issues can arise, and the risk for potential malpractice can increase without a firm understanding on the part of the patient, their family, and the provider as to what the goals of care are.

Sources

“Ensuring Advance Directives Are Followed and Lawsuits Are Avoided”. The ASCO Post. https://ascopost.com/issues/july-25-2017/ensuring-advance-directives-are-followed-and-lawsuits-are-avoided 

“Myths and Facts About Health Care Advance Directives”. American Bar Association. https://www.americanbar.org/groups/law_aging/publications/bifocal/vol_37/issue_1_october2015/myths_and_facts_advance_directives/ 

Advance directives for healthcare are legally recognized documents that healthcare providers are required to follow in most situations. They are not, however, legally binding as a contract would be. According to the American Bar Association, healthcare providers may refuse to follow an advance directive if they have an objection of conscience or believe that the instructions contained in the directive are medically inappropriate. Further, unless you have a POLST or pre-hospital DNR order, first responders will most likely not follow an advance directive that indicates you do not want life-sustaining measures instituted since they are legally obligated to attempt to save your life unless a signed physicians order indicates otherwise. 

With that being said, advance directives often are not followed for reasons other than a healthcare provider’s refusal to do so. For example, in many cases, the directive is not available when a person presents in the emergency department with a life-threatening event. Even when the directive is in the patient’s medical record, providers may have difficulty locating it while simultaneously attending to the patient’s urgent medical needs. Oftentimes, the patient’s designated healthcare surrogate has a copy of the directive but that person can’t be located at the time a health crisis occurs. In these cases, healthcare providers are legally obligated to institute live-saving measures until the surrogate or a properly executed advance healthcare directive can be found. 

Another scenario in which providers may not honor an advance directive is when the designated healthcare agent disagrees with what the directive says. If the person who executed the directive is incapacitated, the designated surrogate or proxy is empowered to make decisions about their care. In consultation with the patient’s doctor, this person may decide that the wishes expressed in an advance directive are inappropriate given the person’s medical condition and the likelihood of recovery. 

Sources

“What is a legally binding agreement?” Termly. https://termly.io/faq/what-is-a-legally-binding-agreement/ 

“Myths and Facts About Health Care Advance Directives”. American Bar Association. https://www.americanbar.org/groups/law_aging/publications/bifocal/vol_37/issue_1_october2015/myths_and_facts_advance_directives/ 

After completing your advance directive, make copies and give one to everyone who is close to you, including your spouse/partner, children, siblings and all those who are important in your life.  Sit down with them at a convenient time, go over your wishes and talk about why you have made the decisions you’ve made. Even if your family doesn’t agree with your point of view, they will appreciate your taking the time to explain it to them. You should also give a copy to your attorney, your health care team and your health care proxy, and, of course, keep a copy for yourself. 

After giving copies to the important people in your life, store the original document in a secure and easily accessible place, such as an unlocked desk drawer or even in the refrigerator, where it will be protected in the event of fire or flood. It’s also more likely to be found there by emergency services personnel while they are looking for medications or a medication list. Make sure your health care surrogate and others in your family know where it’s kept and that the location is accessible to them. Emergency personnel are trained to look in certain places, including the refrigerator door, the door to a bedroom or the back of the front door, so consider leaving a copy in those locations. 

Another option for storing your advance directive is to contract with a service that will store it in the cloud and make it available to your health care provider on your behalf. For an annual fee, MedicAlert will store a copy of your advance directive and prehospital DNR form as part of your emergency health record. It will also provide a MedicAlert bracelet bearing the words “Do Not Resuscitate” for you to wear if that’s your wish. 

The U.S. Advance Care Plan Registry provides a similar service and makes all of your advance planning documents (including a POLST or out-of-hospital DNR) available to EMS and medical providers via the internet or a mobile app. There are also a growing number of apps and services that allow a person to create and save a digital advance directive and video sharing their wishes. 

Sources

“My MedicAlert Services”. MedicAlert. https://www.medicalert.org/medical-id-services/my-medicalert-services 

U.S. Advance Care Plan Registry. https://www.usacpr.com/ 
“About Digital and Video Advance Directives”. CaringInfo. https://www.caringinfo.org/planning/advance-directives/digital-video-advance-directives/

In 1967, attorney and activist Luis Kutner developed the first advance directive in response to rapidly changing trends in end-of-life care. Soon after, legislators in a number of states began to warm up to the idea. In 1968, Dr. Walter Sackett introduced a bill in the Florida legislature that would have given patients the right to make their own decisions about life-saving medical care. Unfortunately, the bill did not pass, and it was defeated again when Sackett reintroduced it in 1973. 

Around the same time that Sackett was introducing his legislation for the second time, Barry Keene, a legislator in California, introduced a similar bill in that state. The measure also failed, but Keene reintroduced it in 1976. That time the bill passed, and California became the first U.S. state to codify the right to create a living will. Forty-three states soon introduced similar legislation, and by 1977, seven of the bills had passed. Fifteen years later, all 50 states and the District of Columbia had legally sanctioned advance directives to some degree. 

Still, the existence of legislation did not mean that every patient or their surrogate was free to make decisions about their medical care. State laws were inconsistent, and doctors were reluctant to relinquish decision-making power to patients or their families. As conflicts arose, it was inevitable that the courts would become involved. 

The first so-called “right to die” case to be heard in the U.S. was in the New Jersey Supreme Court in 1976. The plaintiff was Joe Quinlan, the father of Karen Ann Quinlan, who had lapsed into a coma after consuming alcohol and Valium shortly after her 21st birthday in 1975. After doctors determined that Karen was in a persistent vegetative state, her father requested that her doctors take her off life support. Fearing prosecution, they refused, and her father sued. The case eventually made it to the New Jersey Supreme Court, where, in a landmark decision, Chief Justice Robert Hughes granted Quinlan’s request. In his decision, Hughes cited the following principles:

• Surrogates have the right to make treatment decisions for patients who are physically and/or mentally unable to make decisions themselves.
• Decisions that can lead to the death of a patient who is unable to make their choices known should be made by the family in consultation with the patient’s doctors, not the courts.
• Decisions to continue or refuse medical treatment should consider the invasiveness of the treatment and the patient’s prospects of recovery.
• Patients and, by extension, their legal surrogates or guardians have the right to refuse medical treatment even if it leads to death.

Karen Ann Quinlan was taken off the ventilator shortly afterward. Still, her parents elected to continue tube feedings and other noninvasive care. In a cruel twist of fate, Quinlan lived for nine more years. She died of pneumonia in 1985. 

Federal Oversight of Advance Directives

Although legislation concerning advance directives has historically been left to the states, the federal government did step into the fray in 1990 when Congress passed the Patient Self-Determination Act. Concerned that some healthcare facilities were subjecting the elderly and disabled persons to cruel and unnecessary treatment to increase their profits, lawmakers made it mandatory for all hospitals and nursing homes to inform patients of their right to create an advance directive and to refuse any medical treatment they did not wish to receive. The law did not create new individual rights but rather validated the rights guaranteed by the 14th Amendment, which includes the right to make autonomous, informed decisions about one’s medical care. Specifically, the law required healthcare providers who receive reimbursement from Medicare or Medicaid to do the following:

• Provide written notice to patients of their decision-making rights at the time of admission.
• Provide written information about state laws and institutional policies regarding advance directives.
• Ask the patient if they have an existing advance directive, and if they do, note it in the patient’s chart.
• Inform the patient of their right to do the following:
  • Make their own healthcare decisions.
  • Accept or refuse treatment.
  • Create an advance directive.

During that same year, the Supreme Court heard the case of Nancy Cruzan, a 32-year-old woman who had suffered a cardiorespiratory arrest after a car accident in 1983. Like Karen Ann Quinlan, Cruzan was in a persistent vegetative state, although she was able to breathe on her own. She received nutrition through a feeding tube.

In 1988, five years after her accident, Cruzan’s parents asked her doctors to stop artificial nutrition and hydration and allow their daughter to die a natural death. But in the absence of any evidence that her parents were accurately representing what their daughter would have wanted if she could speak for herself, doctors refused. The case eventually made its way to the Supreme Court of Missouri, which sided with her doctors, stating that the state had a duty to require “clear and convincing evidence” that Nancy would have chosen to die.

The U.S. Supreme Court heard the case in 1990 but failed to rule on the specifics of the case. Instead, in a 5-4 decision, the Court affirmed that the State of Missouri had acted constitutionally in refusing to grant the family’s request. The state withdrew from the case at that point, convinced that it had won the more significant constitutional victory. Shortly after that, Cruzan’s parents presented additional evidence to the Jasper County Court that Nancy would have wished to die rather than live in a vegetative state. The lower Court quickly granted their request. Nancy’s feedings were discontinued on Dec. 14, 1990, and 12 days later, she died.

Both the Quinlan and Cruzan cases set groundbreaking legal precedents and affirmed the importance of a written advance directive and healthcare proxy for all adults. 

Sources

“Dr. Walter Wallace Sackett Jr”. Orlando Sentinel. https://www.orlandosentinel.com/1985/10/07/dr-walter-wallace-sackett-jr-79-a/ 

“Resources”. Center for Practical Bioethics. https://www.practicalbioethics.org/resources/ 

“Persistent Vegetative State and Minimally Conscious State”. Deutsches Arzteblatt International. https://pmc.ncbi.nlm.nih.gov/articles/PMC4413244/ 

“Advance Medical Directives”. MedicineNet. https://www.medicinenet.com/advance_medical_directives/article.htm 

“Law for Older Americans”. American Bar Association. https://www.americanbar.org/groups/public_education/resources/law_issues_for_consumers/patient_self_determination_act/ 

“14th Amendment”. Cornell Law School. https://www.law.cornell.edu/constitution/amendmentxiv 

“Nancy Beth CRUZAN, by her Parents and Co-Guardians, Lester L. CRUZAN, et ux., Petitioners v. DIRECTOR, MISSOURI DEPARTMENT OF HEALTH, et al.” Cornell Law School. https://www.law.cornell.edu/supremecourt/text/497/261 

A health care proxy makes medical decisions for a person who is very ill, unconscious or mentally incapacitated. According to LawHelp.org, a proxy or surrogate is required to act in good faith and follow an individual’s wishes when those wishes are known. 

Some decisions a health care surrogate may make on a patient’s behalf include:

• Whether to admit or discharge them from a hospital or nursing home
• Which treatments or medicines they do or do not receive
• Electing care and support options such as hospice or palliative care
• Whether to institute or discontinue life support 
• Whether to donate organs or tissues after death

A health care proxy also has the difficult job of advocating for the patient with health care providers. This can be especially challenging in situations when medical decisions are not clear-cut. For example, a patient who has a life-limiting illness such as cancer may be doing well clinically when a sudden infection causes them to become gravely ill. At that juncture, the health care team might think that a short stay in the ICU on a ventilator would allow the person to return home and enjoy a good quality of life for quite some time. But family members might feel strongly that being on a ventilator is not what the patient would want. Further, it’s unlikely that an advance directive or even a POLST would address this exact scenario. So the surrogate would be charged with making the decision they believe the patient would make themselves. 

Patients, or, more often, their surrogates, have a number of options when these types of disagreements occur. According to the National Institute on Aging, these include requesting a consultation with the hospital’s palliative care team, who can help guide the discussion about long- and short-term prognoses and goals of care. Family members may also request a consultation with the hospital’s ethics committee, a group of health care professionals who are not involved in the patient’s care and can help resolve conflicts while ensuring that the patient’s rights are respected and their needs are met. If the surrogate is having difficulty getting these consultations or needs additional help, they can contact a hospital representative such as an ombudsman or administrator. 

Sources“Making Decisions for Someone at the End of Life”. National Institute on Aging. https://www.nia.nih.gov/health/end-life/making-decisions-someone-end-life

As so much of our care is dependent on large institutions like hospitals and nursing homes, it is necessary for us to protect our “end-of-life rights.” This basically means the right to a final passing in dignity, comfort, and respect for our preferences and advance health care directives.

What are end-of-life choices or end-of-life rights? What manner of care and treatment am I entitled to at the end-of-life? What do end-of-life rights mean for a dying patient? How can I ensure that these rights are respected?

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Things to Know:

• Be prepared to be proactive in defending your or your loved one’s right to die in a manner that aligns with their values, preferences and beliefs.
• Of the approximately 3,500 people who die in U.S. hospitals each day, many receive inadequate pain treatment or have their advance health care directives ignored.
• Only one in four U.S. hospitals have patient care policies addressing palliative care or end-of-life hospice care.
• Studies show a majority of nursing home residents do not receive optimal end-of-life care.
• Many polls show a majority of Americans support medical aid in dying– what was formerly referred to as physician-assisted suicide– for  terminally ill adults, which is currently authorized in 11 states plus Washington D.C. 
• Should you wish to join those who are asking for legislation and medical policy changes protecting our end-of-life rights, you have the option to join Compassion & Choices.

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What are end-of-life rights?

The goal of end-of-life rights is for all humans to die in a manner that aligns with their values and priorities. Unfortunately, most end-of-life rights are not legally protected in the U.S. and are highly varied by state law. It may largely be your own responsibility to protect your end-of-life rights.

End-of-life rights include respecting your advance care directives and living wills, receiving adequate relief from pain and other symptoms, access to services such as hospice and support groups, access to a concierge physician and palliative care, and information regarding options such as medical aid in dying and voluntary stopping eating and drinking.

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If I die under medical or hospital care, will I be treated with compassion?

Unfortunately, your right to compassionate, dignified end-of-life care is far from guaranteed. About 6,500 people die in the U.S. every day. According to end-of-life expert Stephen P. Kiernan, about half of them die in hospitals “where pain is routinely under-treated, where unconcern with the patient’s emotional condition and disregard for the patient’s family are the norm, where advance directives are often ignored, and where most lives end following the withdrawal of excessive and futile medical technology.” Furthermore, about one quarter of all deaths occur in nursing homes where, Kiernan reports, “untreated pain is common, where boredom is a fact of life, where food is substandard and care insufficient, and where too many residents are subject to neglect or abuse.”

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What are hospice care and palliative care end-of-life programs?

Hospice specializes in end-of-life care, focusing on comfort and pain relief, and is an option for compassionate support during the final months of life. . Hospice  can be greatly beneficial, but far too many people enroll with only days left to live or never receive these services at all. While over 60% of hospitals with over 50 beds have a palliative care team, only one in four U.S. hospitals have patient care policies addressing end-of-life, hospice, or palliative care, according to a 2006 study by the American Association of Critical-Care Nurses. A study published in the July 13, 2005, Journal of the American Medical Association (JAMA), noted that a majority of nursing home residents do not receive optimal end-of-life care, and that hospice care is underutilized at nursing homes, because physicians are often unaware of their patients’ end-of-life preferences. A 1998 study published in JAMA showed 26% of nursing home patients with daily pain received no pain-relieving medication, despite the fact that all patients studied had Medicare coverage that would cover such medication costs. These findings confirm that obtaining adequate end-of-life care is not guaranteed, and it’s important to know your end-of-life rights for yourself and your loved ones.

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What about aid in dying, or physician-assisted suicide, at end-of-life?

Medical aid in dying is a medical practice in which a mentally capable, terminally ill adult with less than six months to live, may request medication from their qualified healthcare provider which they can decide to self-ingest, allowing them to control the manner and timing of their death. Medical aid in dying is widely supported and currently authorized in 11 states and Washington D.C. 

The majority of Americans support medical aid in dying for terminally ill adults,but such assistance is currently legal in only a few U.S. states.

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I am concerned about my end-of-life choices. What choices do I have?

Again, legally defined end-of-life choices have yet to be codified. According to the American Journal of Nursing’s “The Dying Patient’s Bill of Rights,” you and your loved ones have the right:

• To be treated as a living human being until death.
• To maintain a sense of hopefulness, however changing its focus may be.
• To be cared for by those who can maintain a sense of hopefulness, however changing this might be.
• To express feelings and emotions about approaching death in your own way.
• To participate in decisions concerning your care.
• To expect continuing medical and nursing attention even though “cure” goals have been changed to “comfort” goals.
• Not to die alone.
• To be free from pain.
• To have your questions answered honestly.
• Not to be deceived.
• To have help accepting death.
• To die in peace and dignity.
• To retain individuality and not be judged for decisions that may be contrary to the beliefs of others.
• To discuss and enlarge religious and/or spiritual experiences.
• To expect that the sanctity of the human body will be respected after death.
• To be cared for by caring, sensitive, knowledgeable people who will attempt to understand your needs.

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What can I do to help ensure my end-of-life choices are respected?

1. Make sure you have advance health care directives and a trusted individual who will see that your directives are honored.
2. Make sure your family, loved ones and closest friends understand your choices for end-of-life care.
3. If you become terminally ill, make arrangements for hospice care.
4. Make sure you have a financial power of attorney for health care   allowing someone to manage finances for you, including insurance paperwork, should you become incapacitated.
5. Get involved. Join the many people who are asking for legislation and medical policy changes that address end-of-life issues. For more information about legislative and medical reform and how to get involved, you can contact Compassion & Choices.

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For more information:

Compassion & Choices, 800-247-7421

Last Rights: Rescuing the End of Life from the Medical System, by Stephen P. Kiernan (St. Martin’s Press, 2006)

Recommended National Resources 

Compassion & Choices 

The country’s oldest nonprofit dedicated to helping improve care and expand choices at end of life, Compassion & Choices provides a number of helpful tools, including the My End of Life Decisions: An Advance Planning Guide and Toolkit, Dementia Values & Priorities Tool and other end of life planning resources, which help you define your priorities and clarify your wishes about end of life care. You can find all of these resources on the Compassion & Choices website. 

The American Bar Association

The American Bar Association is a comprehensive resource for consumers and legal professionals on many issues related to aging and end of life. Through the ABA Commission on Law and Aging, the organization seeks to strengthen and secure the “legal rights, dignity, autonomy, quality of life and quality of care of older adults.” As part of this initiative, it offers resources for consumers on healthcare decision making.

To learn more, contact

Commission on Law and Aging
American Bar Association
1050 Connecticut Ave. NW, Suite 400
Washington, DC 20036

aging@americanbar.org
(202) 662-8690

Online Resources

The Conversation Project 

The Conversation Project is an organization dedicated to helping people begin meaningful conversations about their end-of-life goals. Its Conversation Starter Guide is an easy-to-follow guide that walks you through the process — from preparing to have the conversation to actually speaking with your loved ones about end of life. It also offers information on how to choose a healthcare proxy and write a living will. 

CaringInfo

A resource offered by the National Hospice and Palliative Care Organization, CaringInfo is a comprehensive guide for those needing information about end of life. The website includes information on hospice, palliative care, caregiving and advance directives, and answers important questions such as how to speak with your family about goals of care.

PREPARE for your care

Developed by Dr. Rebecca Sudore, M.D., a geriatrician, palliative care physician and professor of medicine at the UCSF School of Medicine in San Francisco, California, PREPARE is an online tool that walks you through the steps necessary to develop a meaningful advance healthcare directive that accurately reflects your wishes. The website is free to use, and also allows users to download an easy-to-read advance directive for all 50 states. 

The Stanford Letter Project

The Stanford Letter Project is a free website from Stanford Health in Palo Alto, California, that offers three tools for consumers to convey their values, preferences and healthcare goals to their loved ones and care providers. They include:

• The “What-Matters-Most” letter template, which provides a simple outline that patients can follow to write to their doctor about their care choices and preferences
• The “Who Matters Most” template, which outlines the seven tasks of a life review and provides a format to share thoughts, feelings, values and goals with loved ones.
• The “I-Matter-Too” tool which helps patients identify their life goals.

Advance Directive for Dementia

Developed by Dr. Barak Gasper, M.D., a primary care physician at UW Medical Center in Seattle, Washington, the Advance Directive for Dementia is an Alzheimer’s specific living will. It describes the various stages of dementia and asks the user specific questions about what their goals of care would be when they reach each stage. 

National POLST Patient Resources

A project of the Tides Center, National POLST is a nonprofit advocacy organization that provides information and resources for seriously ill or medically frail individuals who are planning for end of life. Its Patient Resources section includes extensive information about out- of- hospital medical orders: what they are; what they are called in different states; and how to discuss them with your doctor. 

End of Life Games

People are now playing games to get friends and family talking about death. And that’s why a small, dedicated group of entrepreneurs, from scientists and physicians to designers and ordinary citizens, has spent years creating engaging, approachable ways to change how we think about the end of life.

Go Wish

SevenPonds’ favorite conversation starter, Go Wish cards give you an easy, entertaining way to talk about what is most important to you. The cards help you and your family find words to share your thoughts about what would be most important if you were living with a life-limiting illness. You can play Go Wish online for free or purchase the cards on the Go Wish website. 

Hello

Hello is a conversation game that helps you, your friends and your family share what’s most important to you. The game comes with five booklets containing questions like “Who haven’t you talked with in six months that you would want to talk with before you die?” and “What would you like done with your body after you die?” The game is available on the Common Practice website.

Bucket List

Created by Exit Matters, Bucket List is a board game that helps players explore what they really want to do and accomplish before they die. Suitable for up to 6 players, it is a little hard to learn but can spark meaningful conversations as the players master the ins and outs of the game. The game is available for purchase on the Exit Matters website.  

Elephant in the Room

Similar to Go Wish cards, Elephant in the Room is a series of conversation prompts aimed at encouraging players to explore what they would want or not want if they were approaching the end of their lives. It is available for purchase on Amazon.com.

The Death Deck 

The Death Deck is another conversation game that provides a fun and thought-provoking way to explore perspectives surrounding the topic of death. Since the creation of the original deck, the Death Deck has expanded to include other decks including the End of Life Deck and the Dementia Deck.

Experts in End-of-Life Planning and Care

Dr. Rebecca Sudore

Rebecca Sudore, M.D. is a geriatrician, palliative medicine physician, and the director of the  Innovation and Implementation Center in Aging & Palliative Care and the Vulnerable Populations Aging Research Core at the University of California, San Francisco’s Pepper Center. Dr. Sudore conducts research to improve advance care planning and medical decision making for older adults. 

490 Illinois Street
San Francisco, CA 94158
415-221-4810 ext. 23475
Rebecca.Sudore@ucsf.edu

Dr. Barak Gaspar

Dr. Barak Gaster, M.D. is a professor of Medicine at the University of Washington and a board certified internist with a particular interest in the diagnosis and prevention of dementia. He acts as liaison and core educator at the UW Alzheimer’s Disease Research Center and was instrumental in developing one of the first advance directives for dementia in the U.S. 

4245 Roosevelt Way NE
Seattle, WA 98105
206.598.8750
barakg@uw.edu

Dr. Ira Byock, M.D. 

Ira Byock, M.D. is a leading authority and advocate for improving care for people living with life-limiting illness, He is an emeritus professor of medicine and community & family medicine at Dartmouth’s Geisel School of Medicine. He is also the founder of the Institute for Human Caring within the Providence health system, an organization that “drives transformation in clinical systems and culture to make caring for whole persons the new normal.” 

Providence Institute for Human Caring 
879 W. 190th St.
Suite 1000
Gardena, CA 90248

(424) 212-5400 
ira.byock@gmail.com

Thaddeus Madison Pope, J.D., Ph.D. 

Professor Thaddeus Pope is a fellow at the Hastings Center and one of the world’s foremost experts on medical law and clinical ethics. Educated at Georgetown University, where he earned his J.D. and Ph.D., his primary focus is on patient’s rights and medical decision making. Pope is a world-renowned expert on end-of-life issues, including medical aid in dying and voluntarily stopping eating and drinking. 

Mitchell Hamline School of Law
875 Summit Ave, St Paul, MN 55105
651-695-7661
thaddeus.pope@mitchellhamline.edu

Dr. Atul Gawande, MD, MPH

Dr. Atul Gawande is physician, author, public health advocate and assistant administrator for global health at USAID since January 2022. Prior to joining the Biden-Harris administration, he was a practicing general and endocrine surgeon at Brigham and Women’s Hospital and a professor at Harvard Medical School and the Harvard T.H. Chan School of Public Health. An experienced journalist, Dr. Gawande has written numerous articles for the New Yorker and  NY Times and authored several books, including the best-seller “Being Mortal”. 

677 Huntington Avenue
HPM Department
Boston, MA 02115
agawande@partners.org

Dr. Dawn Gross, M.D., Ph.D. 

Dawn Gross, M.D., Ph.D., is a hospice and palliative medicine physician at the University of San Francisco and the Hospice Director at ANX Home Health and Hospice. She is a passionate advocate for end-of-life decision making and empowering patients to live the end of their lives in a way that is congruent with their values and goals. She has been involved with palliative care for over two decades and is the founder and host of the groundbreaking radio show and podcast, Dying to Talk.

Dawn@DrAsYouWish.com

An advance directive is a legal document that spells out how you wish to be cared for if you are unable to make your own healthcare decisions. It also designates the person who can make healthcare decisions for you if you cannot make them yourself. Advance directives come in various formats, often differing from state to state. However, the two most common components of any advance directive are a living will (also called an advance healthcare directive) and a durable power of attorney for health care, according to the legal resource website Nolo.

Jump Ahead to: 

• Types of Advance Directives
• Advance Healthcare Directive or Living Will
• Durable Power of Attorney for Health Care
• Healthcare Agent Qualifications
• POLST and Out-of-Hospital DNR
• How to Create an Advance Healthcare Directive
• Reviewing and Revising Advance Healthcare Directives
• Advance Healthcare Directives and Dementia
• Conclusion

Types of Advance Directives

The four main types of advance directives (which may have different names in different U.S. states) are an advance healthcare directive or living will, a durable power of attorney for healthcare, portable orders for life-sustaining treatment (POLST) and an out-of-hospital DNR.

Advance Healthcare Directive or Living Will

An advance healthcare directive or living will is a written declaration regarding the medical care you do or do not want to receive should you become unable to speak for yourself. For example, if you entered a hospital in a coma or were living with advanced dementia, your advance healthcare directive would provide staff with information about your preferences concerning life-sustaining treatments. Some treatment options commonly seen at the end-of-life include:

• Cardiopulmonary resuscitation (CPR) — a lifesaving technique that uses external compressions and electrical shocks to restart the heart when it has stopped beating effectively.
• Intubation — the insertion of a breathing tube into your trachea.
• Mechanical ventilation — a machine called a ventilator takes over the work of breathing for you. 
• Artificial feeding or hydration — supplies your body with nutrients and fluids intravenously or via a tube in the stomach. 
• Kidney dialysis — removes waste from your blood and manages your fluid and electrolyte balance when your kidneys are not working effectively. 
• Antibiotics or antiviral medications — medications that can treat many infections.
• Comfort care — includes many interventions that may be used to keep you comfortable and manage pain while honoring your wishes about treatments you want to avoid. Comfort care may include pain medication, positioning, supplemental oxygen to help with shortness of breath and medicines to manage symptoms such as nausea, vomiting, constipation, diarrhea and fever. 

Keep in mind as you consider your decisions that all of these options may not be available at the time you become ill, nor will offered life-sustaining treatments necessarily extend your life. In particular, your chances of surviving a cardiac arrest — even if it occurs in a hospital — are typically quite small. According to one 2023 study published in BJM, only 22% of patients whose heartbeat returned after less than one minute of CPR survived to hospital discharge and were functionally intact after the event. That percentage dropped to less than 10% after 10 minutes of CPR. The likelihood of surviving CPR also decreases significantly with age. Furthermore, people who undergo CPR are at risk for broken ribs, damaged internal organs, brain damage due to lack of oxygen and increased physical disability even if they do survive.  

Similarly, a prolonged stay in the intensive care unit can result in a number of adverse physical and psychological outcomes. Known as post-intensive care syndrome or PICS, these can include profound weakness, problems with thinking and memory, and mental health problems such as anxiety, depression and symptoms of post-traumatic stress. 

It is vital to take all of these potential outcomes into account as you make decisions about your healthcare. 

In addition to decisions about end of life care, your advance healthcare directive can also include instructions regarding:

• Organ and tissue donation — you can specify your wish to donate organs or tissue in your living will. You should also register as an organ donor through your state’s registry or  through Donate Life America.
• Donating your body to science — you can specify your wish to donate your body for scientific research in your living will. But you should always contact the organization you wish to donate to and register in advance. 

Experts emphasize that while an advance directive serves as a guide for your healthcare team and surrogate decision-makers, it cannot possibly address every scenario that might occur. In fact, despite the best efforts of those who create them, many advance directives are so ambiguous or contradictory that doctors have a great deal of difficulty deciding what a patient who cannot speak for themselves actually wants. For that reason, it is imperative that, in addition to creating a written document, you talk to your loved ones about your values, goals and wishes around the end of life. The more your loved ones know about your preferences, the more prepared they will be to advocate for you with the healthcare team. 

Durable Power of Attorney for Health Care 

Also known as a medical power of attorney, this document designates the person who can make decisions for you when you cannot make them yourself. This person may also be called a:

• Healthcare agent
• Healthcare proxy
• Healthcare surrogate
• Healthcare representative
• Healthcare attorney-in-fact
• Patient advocate

Healthcare Agent Qualifications 

In every state in the U.S., the only legal requirement for someone to serve as your healthcare surrogate is that they are over 18 years of age (except in Alabama, where the minimum age is 19.) The person does not need to be a relative. In fact, sometimes those people who are closest to you are not the best choice because they are too emotionally invested in what happens to you. When it comes to medical decision-making, the best healthcare agent is someone who is: 

• Calm in a crisis
• Knowledgeable about your values and goals
• Knowledgeable about your medical condition
• Able to communicate effectively with healthcare providers
• Willing and able to advocate for you when it becomes necessary

In addition to your primary healthcare surrogate, you may also choose one or more alternate decision-makers. These secondary designees can step in if your primary agent is unavailable. They may also help the primary decision maker sort through difficult information, negotiate family conflicts and communicate effectively with the medical team. 

Both your living will, and your durable power of attorney for healthcare should be stored in a safe place, updated as life or circumstances change and copies should be distributed to your doctor, attorney and the people closest to you. 

POLST and Out-of-Hospital DNR

In addition to a living will and durable power of attorney for healthcare, some individuals may wish to speak with their doctor about implementing orders to avoid life-saving procedures if they become gravely ill or suffer a cardiopulmonary arrest. Two documents may facilitate this: POLST, an acronym for “providers orders for life-sustaining treatment,” and an out-of-hospital DNR. Both of these documents are suitable only for individuals who are seriously ill, very elderly or medically frail who — in consultation with their physician — have decided that they want to allow their deaths to occur naturally rather than opt for invasive measures to prolong their lives. 

Unlike a living will, a POLST or out-of-hospital DNR is a valid medical order that EMS and hospital personnel are legally obligated to follow in most circumstances. Additionally, unlike a DNR order written in a hospital, which is valid only for a single hospitalization, POLST and out-of-hospital DNR are portable — that is, they follow the patient and remain valid no matter where they are receiving care.

How Do I Create an Advance Healthcare Directive 

Creating an advance healthcare directive, living will and power of attorney for healthcare is relatively straightforward. All 50 states and the District of Columbia have legislation that outlines their requirements for advance directives, and most states have implemented POLST standards to some extent. That said, there is as yet no overarching national consensus about what an advance directive must contain or how it should be executed. So, anyone who is creating an advance directive must familiarize themselves with the laws of their state. A guide to your state laws can be found on the website CaringInfo, where you can also download a copy of the statutory form for your state. 

After you have completed your advance directives, it is imperative that you ensure they are available to those who will be most likely to need them if you become seriously ill. To accomplish this, follow this advice:

• Keep the originals in a safe but easily accessible place, such as an unlocked desk drawer.
• Give a copy to your healthcare team.
• Give a copy to your healthcare agent and any alternates.
• Carry a wallet-sized card that indicates you have advance directives, identifies your healthcare agent and states where a copy of your directives can be found.
• If you have a POLST or Out-of-Hospital DNR, display it in a prominent place such as your refrigerator or bedroom door, where Emergency Medical Personnel will see it if they respond to an emergency. 
• Keep a copy with you when traveling.
• Give a copy to your palliative care or hospice team (if applicable).

Additionally, the importance of speaking with your loved ones about your values and goals around the end of life cannot be overemphasized. Advance directives, especially living wills, are essential but flawed documents. They can be ambiguous and sometimes conflict with other instructions, such as a POLST. Knowing your values — what is important to you, what makes your life worth living and what you can’t imagine living without — is the only way your loved ones and care team can provide the kind of care that will truly meet your end-of-life goals. 

Reviewing and Revising Advance Healthcare Directives

Advance directives for healthcare are not meant to be static documents. On the contrary, they should be reviewed regularly and updated when significant life events or changes to your health occur. Some common circumstances that may prompt a revision of your advance directive include: 

• New diagnosis or change in disease status: Any significant change in your health status such as a new diagnosis of a life-limiting disease or a change in prognosis should prompt a review of your advance healthcare directive. Review your treatment options and goals of care with your doctor to determine if a change is warranted. 
• Change of marital status: You may wish to change your healthcare agent if you divorce, are widowed or remarry.
• At least every 10 years: Your values and preferences may change significantly over time, especially in regards to care at the end of life. As you age, you may wish to review your living will more often to ensure that it is still consistent with your end-of-life goals. 

Advance Healthcare Directives and Dementia

Since the early part of the 21st century, the possibility of disability, decline and death from Alzheimer’s disease or another form of dementia has been a growing concern. Nearly 7 million people in the United States are known to be living with Alzheimer’s disease. As the American population continues to grow older (age is the greatest risk factor for Alzheimer’s disease), researchers predict that number will reach 13.8 million by 2060, barring the emergence of an effective treatment. 

Alzheimer’s disease is a disease that gradually gets worse over time — anywhere from 2 to 25 years depending on a person’s age and other health conditions — that currently has no cure. Changes caused by this brain disease tend to be subtle at first, often not significant enough to interfere with daily life. Over time, physical and cognitive changes will result in the need for around-the-clock supervision and assistance. 

Advance care planning conversations and the completion of advance directives are especially important for a person living with dementia since given time, they will lose the ability to make decisions and communicate their wishes. However, since standard advance directive documents do not address the unique needs of a person living with dementia, a growing number of experts are encouraging the completion of a dementia directive as part of the advance care planning process. 

A dementia directive is a way for people to communicate their wishes for future care and assist loved ones with decisions that support their goals as dementia progresses. It is intended to be completed in advance of a diagnosis or early in the disease process.

Several different dementia directives are available, such as those offered by Compassion & Choices and End of Life Choices New York and the Advance Directive for Dementia developed by Barak Gaster, MD and colleagues at the University of Washington. 

That said, it’s essential to be aware that the simple existence of an advance directive for dementia does not guarantee that providers will follow it. The best way to improve the chance of wishes being honored is to talk openly with the physician and health care team, along with loved ones and the person(s) named as surrogate decision makers about goals, priorities and hopes for future care. 

Conclusion

In summary, advance healthcare directives are essential documents that help ensure your values and wishes are honored when you cannot express them yourself. Although they cannot address every end-of-life scenario, they are valuable tools that augment conversations with your loved ones and healthcare providers about what care you do and do not want to receive if you are seriously ill. 

Sources

“California Living Wills and Advance Health Care Directives”. Nolo. https://www.nolo.com/legal-encyclopedia/california-living-will-health-care-power-of-attorney-31806.html

“Advance Directives”. CaringInfo. https://www.caringinfo.org/planning/advance-directives/

“Living (and Dying) with Dementia”. Compassion & Choices. https://compassionandchoices.org/living-and-dying-with-dementia/

“Power of Attorney”. StatPearls. https://www.ncbi.nlm.nih.gov/books/NBK542309/

“2022 Alzheimer’s disease facts and figures”. Alzheimer’s Association. https://doi.org/10.1002/alz.12638