Five Wishes Advanced Directive

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.

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

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