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  • Jeanne Lee

Post 32: When the Living Will Is Not Helpful

Updated: Nov 25, 2022

"Do you need a copy of my living will for your records?" she asked.

"Honestly, having a thoughtful conversation about what's important to you is the most helpful, both to me as your palliative care physician (read Post 1: What Exactly Does a Palliative Care Physician Do?) and to your family, especially your medical power of attorney [read Post 4: Eleven Common Myths About the Medical Power of Attorney (MPOA)]. The living will is great when it starts the conversation. I don't think the document itself gives useful information."

"What?? Everyone says, 'Complete a living will!' Why don't you think it's helpful?"

The living will is one type of advance directive document, which I commonly see people complete with an attorney. A person is supposed to check mark or write on the document the type of medical treatments or procedures they would want or not want if they were unable to speak for themselves at a certain time in their lives, such as when living with a "terminal condition" or in a "vegetative state."

The document is considered a legal document, though I rarely see information in the living will alone altering the course of medical treatment. The following are the reasons why I think the living will often does not provide useful guidance.

1. People define "terminal illness" differently.

"...if I am suffering from an incurable or irreversible progressive disease and/or a terminal illness" could refer to the person with newly diagnosed stage 4 kidney cancer who is still active and mopping her own kitchen floor every day or to the frail person with severe congestive heart failure who requires hospitalization every three to six weeks for severe shortness of breath because oral medications are not enough to keep fluid from accumulating in his lungs (read Post 9: How Terminal is Terminal?).

Many people in either of the above situation - or a hundred other situations that could be determined "incurable" or "terminal" - would or would not choose "life sustaining" or "life extending" medical treatments, procedures, and intensive unit level of care depending on their current quality of life, their values, and their expected prognosis (read Post 24: A Cloudy Crystal Ball - Predictors of Prognosis Part 1 of 3).

I usually see a checkmark next to "I would NOT want life sustaining measures" if in a "terminal illness" or with a "incurable progressive" disease. Since healthcare providers and family members are not sure what "terminal" means to an individual, usually life extending treatments are administered and continued until healthcare providers and family members sit down to have a meaningful conversation about a loved one's true future outlook.

I think many people envision "terminal illness" as a defined time in which they have increasingly less energy, strength, and quality of life due to worsening irreversible illness or incurable disease. Because acceptable quality of life for one person may be different for another, what is most helpful for family members trying to make decisions during a medical crisis is reflecting back on how their loved one had described quality of life.

"He's always said if he could not get back on a horse, then that would not be quality of life."

"She's a very private person. She would never want to live with people undressing her body and wiping her."

"He said even if he had to live in a nursing home and could not sit up, use the bathroom, or feed himself, it would be enough quality of life if he could smile up at us."

The conversation is what matters. Simply pointing to where the check mark is placed in a living will rarely makes a difference.

2. People define "vegetative state" differently.

"Persistent vegetative state" has a technical medical definition, though not many people are aware of the exact definition. When a person tells me, "I would never want to be kept alive if I were a 'vegetable,'" I always ask, "What does 'being a vegetable' look like to you?"

"It means I don't know what's going on."

"It means I can't wipe my own butt."

"It means I have to live in a nursing home."

I also hear, "If I'm in a vegetative state, don't give up on me! If there's even a chance I'll come back, keep going." Healthcare providers and family members may accept this statement as is - as it is stated in the living will - and may continue life extending efforts with the ventilator, life support medications, feeding tube, dialysis, and other ongoing procedures and medications.

When I hear a person make the above statement and take the time to explore what they mean, I often find that the person is actually saying, "If I'm unconscious (due to something potentially treatable such as low blood sugar, low blood pressure, seizure, stroke), give me the chance to come back to being the person I am." These wishes are what should be communicated to family members during a time when the person is alert and making their own decisions.

Without an actual conversation, the placement of a check mark in a living will could result in confusion and misunderstanding.

People rarely end up in a persistent vegetative state, which is when the parts of the brain that control thought and behavior have not functioned for at least one month and only the parts that control breathing, sleep-wake cycle, blood pressure, and body temperature continue to function. The person's eyes may regularly open but the person is not aware of anything that is going on.

I see many people place a check mark next to "I would NOT want life sustaining measures" if in a "persistent vegetative state." At the same time, meaningful conversations frequently reveal that many people would not want life extending treatments in numerous healthcare situations that fall outside the realm of "vegetative state."

Family members might say, "This may not be a vegetative state, but he wouldn't want to live like this." They can confidently make this statement if they are able to reflect back on conversations they had had with their loved one.

3. People, including physicians, can have a difficult time switching gears in the hospital, especially the intensive care unit (ICU).

"...unlikely to live without mechanical ventilation and/or feeding tubes" could refer to the person who just received a lung transplant five weeks ago and remains in the ICU connected to the ventilator and on multiple life support medications to maintain circulation as her body fights recurrent abdominal abscesses and who has now developed complete kidney failure requiring a form of dialysis only available in the ICU or it could refer to the person who is not able to speak or swallow normally and is unable to follow commands, walk, or care for himself after suffering a large devastating stroke.

When family, friends, church "brothers and sisters," and cardiologists/ nephrologists/ pulmonologists/ neurologists/ oncologists/ surgeons / intensivists have together been working so hard to maintain the vital organs of a loved one, barreling down a particular path tackling and removing obstacles with great effort, it can be emotionally, mentally, and spiritually difficult to stop running, look around, and ask, "Would my loved one want to continue on this path?"

At this time, a check mark next to "I would NOT want life sustaining measures if I were unlikely to live without mechanical ventilation and/or feeding tubes" on a piece of paper would likely be disregarded, if even brought up at all.

A purposeful conversation in which everyone paused, stepped back, and looked at the big picture would more likely result in honest responses to the questions, "If my loved one were sitting next to me and they understood the reality of their medical situation, would they say this is truly the medical care they want? If we had a heart to heart right now, what would they say is the best medical care for them at this time (read Post 38: Choosing Where, When, and How a Loved One Dies Takes Knowledge, Action, and Courage)?"

4. Most people are not able to describe individual medical treatments nor their purposes.

"The treatments I would not want under any circumstances are..." is a difficult question to answer in the living will.

This is asking a person to a) comprehend the scope of each medical treatment and procedure and b) consider a variety of potential circumstances and envision whether they would want each of these medical treatments and procedures in those circumstances. As a person working in the medical field, I know I myself would have a difficult time accomplishing either of the above.

Car repair and management are unfamiliar to me. The extent of my knowledge is "Brake pads are good. I want the tire pressure checked. Various fluids need to be replenished." I would never attempt to list car "treatments" and repairs that I would decline "under any circumstance." I would ask the mechanic, "I want this car running smoothly and consistently again. What is everything you recommend we do to get the car to that point?"

The response may be, "At this point, it would be a big job. We would have to [insert auto terminology that sound like gobbledygook to me]."

I would then reply, "Okay, I don't exactly understand [gobbledygook]. Can you instead tell me how [gobbledygook] will help this car run smoothly and consistently and compare that to the cost of [gobbledygook], the time it will take to wait for certain parts, the upkeep or maintenance [gobbledygook] will require, and the likelihood that [gobbledygook] will work?"

A person may place a checkmark next to "I would not want dialysis under any circumstance" in their living will, and yet months later their family may consent to dialysis while their loved one is lying in bed with multiple failing organs in the ICU because specialists are telling the family "dialysis is necessary right now to buy your loved one time to potentially turn around the other organ systems."

At this point, many people will have forgotten - or may not even know about - their loved one's check mark in a living will.

It is the goals of care conversation (read Post 8: I Want the Best Care Possible for ME - Part 2 of 2) in which everyone pauses to look at the big picture that serves as the best guide on the level of medical treatments to pursue (read Post 16: Medical Decision Making 101).

5. People define "quality of life" differently.

Some living wills specifically mention continuing treatments as long as doctors believe the person could achieve an acceptable "quality of life" versus withdrawing "life extending" or "life sustaining" treatments if they did not think that "quality of life" could be achieved.

Then the medical teams would have to answer "What IS acceptable quality of life for this individual?"

"I think quality of life would be if I thought the person could enjoy a sunrise."

"I think quality of life would be if they could be aware of what is going on."

"I'm going to assume the default - that quality of life is any kind of life - and I'm going to continue life extending measures until the family says otherwise."

Communicate what is most important to you for quality of life so that a stranger does not end up deciding for you (read Post 37: "Do Everything" and Other Misconstrued Phrases). Communicate what is most important to you so that your family does not argue among themselves on what you would want. Your family would then be able to reflect back on these conversations during a medical crisis.

One big benefit to completing a living will is that it can serve as a conversation starter, specifically conversations regarding a person's most important values, goals, priorities, and quality of life. The living will is NOT helpful if completing the document replaces meaningful conversations and gives the person a false sense of security that all issues have been addressed and that no talking is needed.

These conversations, rather than a series of check marks in a living will, are a much more helpful guide for family members if they ever had to decide which medical treatments to accept or decline on your behalf during the most vulnerable moments of your life (read Post 20: How Do You Make Medical Decisions for Someone Other Than Yourself? - Five Common Methods).


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