Why do patients often deviate from their advance directives?

One of the most difficult decisions that patients, families and physicians face involves end-of-life care. The advance directive or “living will” has become an accepted framework for patients to delineate their own preferences about what treatment they would or would not want when faced with a life-threatening disorder. But it was not always this way.

In the past, physicians and families often shielded those with potentially fatal illnesses from candid conversations about dying. The doctor or a family member would make decisions to sustain or stop treatment, typically without consulting the patient. This has changed over the past three decades following a landmark report entitled “Deciding to Forgo Life-Sustaining Treatment” issued by a presidential commission in 1983.

Advance directives have become increasingly used to guide patients and family members. The underlying assumption is that a great deal of the stress and complexities of making decisions about therapy will be solved if the patient specifies his or her preferences in advance. But considerable research has highlighted that choices about treatment frequently change, and advance directives often fail to accurately forecast what a patient will want when actually experiencing a severe illness.

Consider the case of a 64-year-old woman diagnosed with cholangiocarcinoma. The cancer could not be fully resected. When she was informed of the extent of the tumor and the poor prognosis, she told her family that she was ready to die. “I’ve had a great life,” she affirmed. But her family prevailed upon her to undergo chemotherapy, and for eight years, the tumor was quiescent.

This woman had planned every detail of her funeral and had an advance directive that specified that should the cancer grow and her condition deteriorate, she did not want “heroic measures.” Her daughter recounted that her mother had said that “She was ready to die when her time came and that she wanted to die at home with dignity.”

After eight years of good health, the patient developed multiple hepatic metastases and liver abscesses. She required percutaneous drainage and hospitalization for intravenous antibiotics, and the metastatic lesions progressed. She became severely fatigued, spending the entirety of her day in bed. An avid reader all her life, she could hardly read more than a few pages before drifting off to sleep. Her condition continued to deteriorate.

Yet when asked, the patient insisted, “I want to keep trying. I want to fight.” The patient’s daughter told us that the family was “shocked and confused” by these sentiments. They all expected that she would reiterate her earlier wishes and forgo further treatment. Instead, the patient became determined to try other therapies. This was not due to medication or confusion; she was lucid when expressing her desire to undergo as much treatment as necessary to keep her alive.

This change in preferences around end-of-life care is not unusual. A study led by Terri Fried, MD, of Yale University, an expert in end-of-life decision making, illustrated how preferences can change. One hundred eighty-nine patients were studied over a two-year period; these patients had diagnoses typically seen at the end of life, including congestive heart failure, cancer and chronic obstructive lung disease. Although many of the patients had been hospitalized in the previous year, including some in the intensive care unit, most rated their current quality of life as good.

The study involved repeated patient interviews about their wishes to undergo specific medical interventions, such as intubation and a ventilator, and their choices about undergoing treatment that would prevent death but might, or might not, leave them bedridden or with significant cognitive limitations.

The researchers found that nearly half of the patients were inconsistent in their wishes about such treatments. Although more people whose health deteriorated over the two-year study period showed such shifts in preferences, even those whose health was stable changed their minds. Having an advance directive had no effect on whether a patient maintained or shifted his or her initial preferences about therapies.

This is one of several studies that led researchers like Dr. Fried and her colleague, Rebecca Sudore, MD, of the University of California, San Francisco to conclude that advance directives “frequently do not … improve clinician and surrogate knowledge of patient preferences.”

Muriel Gillick, MD, a geriatrician at Harvard Medical School and a researcher in end-of-life care, similarly wrote that, “Despite the prodigious effort devoted to designing, legislating, and studying of advance directives, the consensus of medical ethicists, researchers in health care services, and palliative care physicians is that the directives have been a resounding failure.”

Why do patients often deviate from their advance directives? They do so because they cannot accurately imagine what they will want and how much they can endure in a condition they have not experienced.

Our patient with cholangiocarcinoma originally set out her wishes in her advance directive, believing that life would not be worth living if she were bedridden. When she became ill, her family, being healthy, viewed her quality of life as so poor that it did not seem worth pursuing continued treatments. But the patient found that she could still take great pleasure in even minor aspects of living, enjoying the love and attention of her family.

Cognitive scientists use the term “focalism” to refer to a narrow focus on what will change in one’s life while ignoring how much will stay the same and still can be enjoyed. Another insight from cognitive psychology that is relevant to the changes in preferences for many patients is “buffering.” People generally fail to recognize the degree to which their capacity to cope will buffer them from emotional suffering. The often unconscious processes of denial, rationalization, humor, intellectualization and compartmentalization are all coping mechanisms that patients employ to make their lives endurable, indeed, even fulfilling, when ill.

Another limitation of an advance directive is that it cannot encompass every possible clinical scenario that may arise. For example, a patient is newly diagnosed with an incurable lung cancer with a life expectancy of two years or more. The patient states in his advance directive that he does not wish to be placed on a ventilator. Soon after initiation of treatment, the patient develops pneumonia, and intubation with ventilation for a few days is needed for support as the antibiotic therapy takes effect. Should this patient forgo being placed on a ventilator?

Over the past two decades, there have been attempts to refine the advance directive by having the patient specify at the time of hospital admission the types of treatments that are acceptable: full CPR or not, intravenous fluids, comfort measures like oxygen and pain medications. Physicians then write orders in the patient chart about each of these interventions.

While this refinement may be helpful, researchers in end-of-life care emphasize that there are no shortcuts around emotionally charged and time-consuming conversations that involve patients, families and physicians.

Even with detailed initial instructions, patients may change their minds. Repeated communication can help bring clarity to these difficult decisions. We believe an advance directive is an important beginning, but not the end, of understanding a patient’s wishes when confronting severe illness.

Jerome Groopman, a hematologist-oncologist and endocrinologist, and Pamela Hartzband are staff physicians at Boston’s Beth Israel Deaconess Medical Center. They are authors of Your Medical Mind: How to Decide What Is Right for You. This article was originally published in ACP Internist.

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  • Guest

    Having proxied my way through both my parents’ terminal hospitalizations (TAs), one completely intubated/ICU, the other nosocomial MRSA after elective pacemaker eligibility testing/admission, I have some experience around demises differing from ADs. Sudden medical collapse of a spouse/parent who was not the one who was expected to go first (because the other was the one with a range of big bad medical problems) so shocked us that we didn’t even refer to Mom’s ADs. An exacerbating factor to the suddenness was my folks’ 60 year marriage. Combined, these aspects led us to treatment that, no surprise, required 1-2 weeks to succeed or fail. A dice roll. As Sharon Kaufman’s research documented in general, Mom’s ICU demise played out over a 3-week period that might have served as another textbook example.

    ADs and ‘the talk’ ought to encouraged for their vital importance, but better framed to the public as tools to help inform events, not necessarily shape them. That they’re not confuses me; I surmise that the many new voices offering “living will plus ‘the talk’” as the solution don’t think Americans can handle the depth of including the full range of things to know and consider when pondering how to move through the chessboard to die in peace in the twenty-first century.

    Since both of my folks’ TAs included profoundly harmful systemic errors from start to finish I feel twice bitten, a million times shy. Hence my orientation to avoid their fates. So, while ADs are a necessary “knot” in the legal net we need to weave, we’d all be better served if the focus moved on to discussing a range of systemic realities. But, talk about time and attention consuming…

  • http://www.facebook.com/BartWindrum Bart Windrum

    Having proxied my way through both my parents’ terminal hospitalizations (THs), one completely intubated/ICU, the other nosocomial MRSA after elective pacemaker eligibility testing/admission, I have some experience around demises differing from ADs. Sudden medical collapse of a spouse/parent who was not the one who was expected to go first (because the other was the one with a range of big bad medical problems) so shocked us that we didn’t even refer to Mom’s ADs. An exacerbating factor to the suddenness was my folks’ 60 year marriage. Combined, these aspects led us to treatment that, no surprise, required 1-2 weeks to succeed or fail. A dice roll. As Sharon Kaufman’s research documented in general, Mom’s ICU demise played out over a 3-week period that might have served as another textbook example.

    ADs and ‘the talk’ ought to encouraged for their vital importance, but better framed to the public as tools to help inform events, not necessarily shape them. That they’re not confuses me; I surmise that the many new voices offering “living will plus ‘the talk’” as the solution don’t think Americans can handle the depth of including the full range of things to know and consider when pondering how to move through the chessboard to die in peace in the twenty-first century.

    Since both of my folks’ THs included profoundly harmful systemic errors from start to finish I feel twice bitten, a million times shy. Hence my orientation to avoid their fates. So, while ADs are a necessary “knot” in the legal net we need to weave, we’d all be better served if the focus moved on to discussing a range of systemic realities. But, talk about time and attention consuming…

  • maggiebea

    I appreciate the truth of the facts this post points out, and I want to
    also note that we’re NOT talking about the same situations as the ones
    an Advance Directive is intended to cover. The patient who expresses a
    different wish, while conscious and of sound mind, than the one they’ve
    written in an AD may, or may not, be actually ‘changing their mind.’
    What I want, while I’m awake and able to say, is quite different for
    what I want if I am no longer able to be consulted. The fact of being so
    incapacitated as to be unable to participate in the conversation is the
    single most important reason why I would want an AD. And it’s the ONLY
    time I want my doctors to follow it.

  • http://www.facebook.com/jlschuster1 Janice Lynch Schuster

    This is a thoughful and informative article–but what an unfortunate title. It caught me eye, it had such a negative connotation–but it’s not really that patients deliberately deviate from their plan, as that they discover their circumstances change and so, too, their decisions.
    A friend and I both specialized in writing about end of life issues and often talked about our wishes and preferences. In theory, we both thought that we would not want “everything done”. And then she developed pancreatic cancer, while in her early 50s, and soon was on a course of pursuing every treatment available. There would have been no predicting this change in her preferences–only honoring and respecting those choices, once they had been made.
    Where I work now at the Altarum Institute Center for Elder Care and Advanced Illness, we are promoting the idea that care plans in general are essential, and that these plans should include, but not be subsumed by, advance care plans. We envision plans that map out all of the medical and social services and supports a patient would require; would move across time, setting, and provider; and would change, change, change as a patient’s illness progressed and changed. We believe such care plans will be essentail to people who live for many years with a serious illness, and who will need many modifications to their care along the way.
    Janice Lynch Schuster
    Senior Writer
    Altarum Institute Center for Elder Care and Advanced Illness

  • DrJoanneLynn

    Groopman and Hartzband are right that ” there are no shortcuts around emotionally charged and time-consuming conversations that involve patients, families and physicians.” I have often been surprised at how little time it often takes, really. I worry, though, that we have entirely too rational a concept of decision-making. We are still trying to make the messy nature of life fit into decision trees, with self-advantaging decision points that just need the input of the patient’s preferences. What about the common situation where the patient is heavily motivated by the desire not to look foolish and is watching the dialogue for the clues as to what is expected? Or the patient who mainly wants to be cherished by certain persons in his or her close circle and is looking for validation? The patient may be hearing “the facts” that the doctor thinks are important, but reading the situation quite differently. In short – I think we have a long way to go in learning how to enable patients to live their lives fully on their own terms. Along the way, physicians and the care team can at least learn to respect the patient’s authority to live their life by being honest and well-informed about the patient’s likely course and the available supports (as well as treatments), and we can do better (much better!) at providing those supports in every community.

  • StephenModesto

    ..Thank you for the article. It is very interesting to hear that this phenomena is just not `local’. Patients and families do indeed `change their minds’ as they change TV channels. The `idea’ of Advanced Directives is a indeed a good one, yet the practice after the theory is another conversation. Personally, I found it `odd’ how the article referred to the cognitive psych reference of `buffering’ as insightful info. People `do’ this adaptation all the time; it is part of the humanness of nature. It is as if no one has read any Viktor Frankl? Regardless of Advance Directives, a dying patient still looks forward to watching the syndicated TV re-runs of `I Love Lucy’ and `Little House on the Prairie’ in the acute/ICU/LTC generic room. Even though they have already seen the program, they want to watch it again.
    I will do a google follow up about the `Altarum Institute’…Thanks Janice.

  • http://twitter.com/SueWintz Sue Wintz

    Excellent article, thank you. As a board certified chaplain affiliated with HealthCare Chaplaincy who has worked with patients and families for over 30 years, I find this to be a common situation. Despite having written out one’s plans in detail, fear and other emotions will often kick in when the reality comes. What was missing from your case description was a referral to the team’s clinically trained board certified chaplain. If I had seen the patient, I would have had a conversation in order to hear her beliefs and values, assess their impact on her current condition, and determine whether there were issues of spiritual, religious, cultural, or emotional distress that needed to be addressed, by me or other members of the team if they involved questions about medical interventions. Of course this is most effective when the chaplain is involved at the first diagnosis or admission, however it is just as helpful to the care of patients and families when the chaplain is consulted as protocol when these events occur. End of life conversations are emotionally charged and time-consuming – however that’s when the professional chaplain becomes a key member of the team. We’re trained to listen differently, to facilitate conversations, to identify implications for one’s plan of care, and to communicate effectively with the physician and other members of the team. “Being comfortable with what is uncomfortable” is what the chaplain does.

    I would also say that there is a great need for physicians to communicate more clearly with patients about a patient’s wishes and advance directives both at the time of diagnosis and throughout treatment. Countless times I have been in situations where patients or families received quick and medical-jargon filled information from physicians that they didn’t understand. I can “interpret doctor-speak” and re-explain to them the implications of treatment options (for example, “being put on a ventilator as sick as you are may mean that you won’t be able to get off of it, and you won’t be able to say the things you might want to say to your family”). However for many patients these implications were never fully explained to them in the beginning when they wrote their advance directive. The only exception has been when it is a professional chaplain doing the AD education, which occurs in many hospital settings, because our focus again is on helping the patient identify the beliefs and values important to them when the near the end of life.

  • Molly_Rn

    I have a very firm advanced directive
    with one caveat: if the Cubs are winning in the World Series, please keep me
    alive and let me know the score.

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