Skip to main content

Advance directives say “I’m not dead yet”

“Enough. The living will has failed, and it is time to say so.” So said Angela Fagerlin and Carl Schneider in 2004. “Living wills are still widely and confidently urged on patients, and they retain the allegiance of many. For these loyal advocates, we offer systematic proof that such persistence in error is but the triumph of dogma over inquiry and hope over experience.” Joann Lynn wrote an essay titled Why I Don’t Have a Living Will, saying, “I do not have a living will because I fear that the effects of having one would be worse, in my situation, than not having one. How could this be? A living will of the standard format attends to priorities that are not my own, addresses procedures rather than outcomes, and requires substantial interpretation without guaranteeing a reliable interpreter.” Thomas Pendergast said, “[Since the passage of the Patient Self Determination Act in 1990] advance directives are recorded by medical personnel more often but are not completed by patients more frequently. The process of recording them does not enhance patient-physician communication. When available, advance directives do not change care or reduce hospital resources. The most ambitious study of advance care planning, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments [SUPPORT], failed to show any change in outcomes after an extensive intervention.” Prominent figures in palliative care decried persistent research and health policy efforts to promote living wills, saying, “when have living wills ever been shown to do anything???!!!”

And yet, after being thrashed to within an inch of death, two recent studies breathed life into advance directives. Before getting into the particulars of these studies, it’s important to understand how and why we came to have advance directives in the first place.

Driven by the rise of the autonomy standard in medical decision making, two primary events led to the propagation of advance directives: highly publicized legal cases of young women (Karen Ann Quinlan and Nancy Cruzan) in a persistent vegetative state, and the AIDS epidemic among young gay men. The Cruzan case eventually made it to the Supreme Court, where justices affirmed the individual’s right to refuse life-sustaining treatment, but allowed states to set their own evidentiary standards for documentation. In response, patients began advocating for stronger protection of their right to self determination in the form of written or oral advance directives on a state by state basis. In California in the early 1980s, the wards of San Francisco General Hospital were filled with young gay men dying of AIDS. California law stipulated that relatives were the default health care proxy for these men. In many cases these men had become estranged from family members or simply preferred that their partners – who knew them best – guide decision making when they lost capacity. The national response to this movement toward protecting patientss right to self-control culminated in Congress’s passage of the Patient Self Determination Act in 1990, which mandated that hospitals ask all patients if they have an advance directive and offer information about them, but stopped short of mandating that they complete one.

Two recently published studies provide a major challenge to the arguments of opponents of advance care planning, as applied specifically to older adults, by finding that: (1) older adults are completing advance directives; (2) many elders lose the ability to make decisions before death and need decisions made, creating a role for advance directives; and (3) advance directives match treatment to patient goals better than usual care.

In an article in the New England Journal of Medicine published last month, Silveira and colleagues used after death interviews with next of kin from a national survey to describe the prevalence and use of advance directives around the time of death. Using data from next-of-kin for 3746 subjects age 60 and older who died between 2000 and 2006, they found:
  • 43% of elders who died required a major decision about treatment at the end of life
  • 70% of those patients who needed a decision made lacked the ability to make a decision
  • 68% of patients who lacked the ability to make a decision and needed one made had an advance directive
  • 97% of elders who requested comfort care received it
  • 50% of elders who requested “all care possible ” to sustain life received it
In the second article, released online first by the British Medical Journal, Detering and colleagues randomized 309 hospitalized Australian patients aged 80 and older to facilitated use of an advance care planning decision aid followed by completion of an advance directive, or usual care. Notable findings:
  • Of the 154 elders randomized to the advance care planning intervention, only 4 patients declined the intervention.
  • Satisfaction with the hospital stay was higher in the intervention group (93%) compared to the control group (65%).
  • Of the 56 patients who died 6 months after enrollment: 25/29 (86%) in the intervention group had their end-of-life wishes followed, compared to 8/27 (30%) in the control group.
This BMJ article by Detering was the subject of journal club in the UCSF Division of Geriatrics last month and the Program in Palliative Care this Thursday. A few of the take home points from our discussion: (1) the effective sample size for assessing the effectiveness of the intervention was small – 56 patients – highlighting the need to replicate this study in larger samples before jumping up and down; (2) the fact that so few Australian elders declined the advance care planning intervention implies it was acceptable to them – would Americans be as open? (3) overall satisfaction with the hospital stay improved dramatically with the advance care planning intervention, and this may be an incentive for hospitals with publicly reported satisfaction measures to incorporate advance care planning discussions into routine care; (4) nurses led the intervention – countering the argument following the failure of the nurse-led SUPPORT intervention that advance care planning must be done by physicians to be effective; and (5) a structured and facilitated decision aid helped people make decisions, and the structured discussion and aid method is better than the usual menu option with a lawyer we have in the US (remember the scene from Seinfeld – paraphrasing - lawyer asking George Costanza, “What if you have one eye, one leg, and you have to eat through a tube?” George, “Pull the plug!”).

Do these studies convince you? Have advance directives been resuscitated? Did you ever doubt them? The movement toward advance directives was really spurred by challenges to the autonomy of younger patients (young women in persistent vegetative state, young men with AIDS), not older adults. Perhaps they are not the right mechanism for younger patients, who have not had the opportunity to experience life’s stages, and may have different potential for recovery from serious illness. But for older adults? A quote from the Silveira article:

“The fact that so many elderly adults complete advance directives suggests that they find these documents familiar, available, and acceptable. Moreover, it suggests that elderly patients, their families, and perhaps their health care providers think advance directives have value.”

Interestingly, Fagerlin (author of the Enough: Failure of the Living Will article) and Silveira (author of the NEJM study finding wide usage of advance directives among elders) are both at the University of Michigan. I wonder what they say to each other.


Eric Widera said…
Great post Alex. For me, the BMJ article showed the power of using some type of guide when discussing advance care planning with patients, instead of just handing them out a blank advance directive. The authors in this study used the "Respecting Patients Choices program", one of the many workbooks out there that patients can use to give them their voice. It uses the context of their illness and their values to help frame the decision.
JTMcKay said…
As this article notes, standard state advance directives are often poorly worded, and frequently focus on procedures and treatments more than values, life goals, and health outcomes. More recently designed advance directives help to remedy this problem. The Five Wishes living will is one directive form that expands on the usual documentation scope (see Another even more comprehensive directive is the Lifecare Advance Directive (see The site also offers useful guidebooks for directive completion and discussion. The Center for Practical Bioethics offers a useful planning workbook, as well (see: Readers might want to explore these available directives and resources further, particularly since many studies indicate that the more detailed and complete your advance directive, the more likely your wishes will be followed. Regardless of the advance directive forms chosen, everyone should make sure that their wishes are well documented and clearly spelled out. Doing so can certainly save a great deal of unnecessary suffering and greatly reduce the burdens that families experience at these very difficult times.
-- JT McKay, PhD
Anwer Pasha said…
I am surprised to see how you are talking about suicide or killing of elders. All wrote is equal to killing of a human being. Tell the people to take care of their elders and sicks till the nature completes its work.
Dan Matlock said…
Anwer Pasha, no one mentioned either suicide or killing of elders. Also, you mention letting "nature completeing its work" - is that with aggressive medical therapy or without - because either way nature is completeing its work. The idea behind advance directives is about what kind of medical therapy you want - it is pretty arrogant to think we can stop nature.
Anne Kinderman said…
Sorry I missed the discussion. I'm very interested to see how alternative approaches (e.g. non-physician facilitators) might be operationalized here. As to Alex's comment about younger people and their differing perspectives on frailty and end-of-life issues, I see many patients who are younger and have great difficulty facing the end of life, hence planning can be challenging. I also wonder how these results would differ in a culturally and ethnically diverse patient population -- "self-determination" is not necessarily something all cultures would embrace (preferring family-determination). I'm personally fascinated to see how Advance Directives are being implemented in Asia and Latin America, in particular.

Popular posts from this blog

The Dangers of Fleet Enemas

The dangers of oral sodium phosphate preparations are fairly well known in the medical community. In 2006 the FDA issued it’s first warning that patients taking oral sodium phosphate preparations are at risk for potential for acute kidney injury. Two years later, over-the-counter preparations of these drugs were voluntarily withdrawn by the manufacturers.  Those agents still available by prescription were given black box warnings mainly due to acute phosphate nephropathy that can result in renal failure, especially in older adults. Despite all this talk of oral preparations, little was mentioned about a sodium phosphate preparation that is still available over-the-counter – the Fleet enema.

Why Oral Sodium Phosphate Preparations Are Dangerous 

Before we go into the risks of Fleet enemas, lets spend just a couple sentences on why oral sodium phosphate preparations carry significant risks. First, oral sodium phosphate preparations can cause significant fluid shifts within the colon …

Length of Stay in Nursing Homes at the End of Life

One out of every four of us will die while residing in a nursing home. For most of us, that stay in a nursing home will be brief, although this may depend upon social and demographic variables like our gender, net worth, and marital status. These are the conclusions of an important new study published in JAGS by Kelly and colleagues (many of whom are geripal contributors, including Alex Smith and Ken Covinsky).

The study authors used data from the Health and Retirement Study (HRS) to describe the lengths of stay of older adults who resided in nursing homes at the end of life. What they found was that out of the 8,433 study participants who died between 1992 and 2006, 27.3% of resided in a nursing home prior to their death. Most of these patients (70%) actually died in the nursing home without being transferred to another setting like a hospital.

 The length of stay data were striking:

the median length of stay in a nursing home before death was 5 months the average length of stay was l…

Palliative Care in Nursing Homes: Discussion of a Multinational Trial with Lieve Van den Block

Nursing homes are a tough place to do palliative care.  There is extremely high staff turnover, physicians are often not present except for the occasional monthly visit, many residents die with untreated symptoms usually after multiple hospitalizations and burdensome life-prolonging treatments, and specialty palliative care - well that is nowhere to be found in most nursing homes outside of hospice.  So what can we do to improve the palliative care outlook in nursing homes?

On todays podcast we talk with Lieve Van den Block about her recent palliative care intervention that was published in JAMA IM this week.  Lieve led a multicomponent intervention to integrate basic nonspecialist palliative care in in 78 nursing homes located in 7 different European countries.  Just take a moment to grasp the size of this study - 7 counties, 78 nursing homes.  I struggle with just trying to improve palliative care in one site!

We discuss with Lieve the results of the study, her take on why they got…