Planning An Advance Directive

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 HEALTH CARE 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/ 

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 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