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When have advance directives ever been shown to do anything?  They were a complete failure in SUPPORT.  Study after study demonstrates that few people fill them out, rarely are they used, and that health care proxies don’t have a great idea of what their loved one want anyway.  As Angela Fagerlin and Carl Schnieder famously opined: “Enough: Failure of the Living Will.”

And yet, over the last few years a series of studies have breathed new life into advance directives (see here and here).  A new studypublished today in JAMA adds another piece to the puzzle.  The challenge is that it’s a somewhat puzzling piece.

A terrific group of researchers from the University of Michigan used a nationally representative survey of older adults followed through death.  They examined variation in medical expenditures for persons with advance directives that state treatment should be limited in certain situations, to those without advance directives or advance directives stating no limitations in care.  They found:

  • Advance directives specifying limitations in end-of-life care were associated with lower costs in regions where end-of-life care spending was highest, but not in middle or low spending regions.
  •  No difference in use of life-sustaining treatments (intubation, mechanical ventilation, treacheostomy, gastrostomy tube placement, hemodialysis, tpn, CPR) by advance directive status, across all spending regions.
  • People with advance directives specifying limitations were more likely to use hospice and die outside of the hospital in high spending regions.

So what to make of this?  The authors argue that advance directives seem
to have the most impact when they specify a direction of care that is
“counter-culture” – limiting life-sustaining treatments in an area
where costly end-of-life care is the norm (sorry to pick on you New
York and Los Angeles!).

We have more help in interpreting these findings in the accompanying editorial by Doug White and Bob Arnold.  They argue that while the initiation of life-sustaining treatments does not entirely explain differences in the impact of advance care planning on costs in high spending regions (as no difference was found), perhaps the duration of use of life support explains differences in cost:

Advance directives were originally designed to allow patients to determine in advance what treatment they would receive in the event of their incapacity. Instead, it may be that treatment-limiting advance directives work not by making the decisions but by giving surrogates and physicians psychological permission to cease life support at some point…This distinction is important because it may signal the need to refocus advance care planning efforts to help surrogates and clinicians make good decisions rather than simply enact patients’ prior decisions.

This is a very interesting observation, and bears repeating in light of Rebecca Sudore and Terri Fried’s work: advance directives help surrogates make in-the-moment decisions.  Deciding not to initiate life-support is hard, and I know many family members (including my own) who could not say no to initiating these treatments in the crunch of the moment…even if the advance directive specified avoiding those treatments. Because, really, who knows?  Maybe the directive didn’t apply to this exact scenario?  Maybe there’s a chance?  But after the initial storm, advance directives offer some guidance, allowing loved one’s permission to agree to a time-limited trial. And then, when the trajectory is more certain, to let go.

by: Alex Smith

This Post Has 8 Comments

  1. I agree with and wish to clarify one statement: "Refocus advance care planning efforts to help surrogates and clinicians make good decisions rather than simply enact patients’ prior decisions."

    The decision that must be made is WHEN, not WHAT. "WHAT" is a clear “given”: stop life-sustaining treatment. So the hard part for the patient is to describe WHEN.

    Also this point of view embodies the contractual type of proxy agreement rather than covenant type: the proxy collaborates with physician to help determine WHEN.

    However, I was disappointed in Alex Smith's over-generalized conclusion and found it disappointing because it seems to give positive sanction to making decisions that are exactly the opposite of what the patient requested, based on two assumptions that the patient may have actually diligently considered: "Maybe the directive didn’t apply to this exact scenario?" [and] "Maybe there’s a chance.” What if the directive DID apply [and] there is NO chance—as in the case of Advanced Dementia, which the patient described well by a selecting a set of symptoms, losses of function, unwanted behaviors, and conflicts with lifelong values? If the medical-social-psychological scenario came down to a family member who “could not say no” (for example to refuse tube or even assisted spoon feeding), then that family member should abdicate or be disqualified so that another legally designated proxy/agent can say "No," if that is what it takes to honor the autonomous right of the patient to have health care providers honor his/her "Known Wishes."

    Stanley A. Terman, PhD, MD
    Board Certified in Psychiatry
    Medical Director and CEO of Caring Advocates
    800 647 3223 or 760 431 2233
    FAX: 888 767 6322

    Dr. Terman is the author of:
    "My Way Cards," a new (2011) tool for Advance Care Planning that informs people what it is like to live with Advanced Dementia (and other terminal illnesses) using plain, straightforward descriptions that have almost no medical jargon or medical diagnoses, but include illustrative line drawings to enhance understanding; and generates a legal document, the Natural Dying—Living Will, that is designed to be an effective Advance Directive;
    "The BEST WAY to Say Goodbye: A Legal Peaceful Choice at the End of Life" (2007);
    "Lethal Choice" (2008) (a medical thriller); and,
    "Peaceful Transitions: Stories of Success and Compassion; Plan Now, Die Later—Ironclad Strategy" (2011) [2nd Ed]. "Stories of Success and Compassion" is motivational; "Plan Now, Die Later—Ironclad Strategy" explains and guides readers on how to create an effective set of forms and select a trusted proxy/agent so that others will honor their wishes and they can attain the goal of a timely and peaceful transition. (Available as a combined book or as two separate books, both in print and in e-book formats.)

  2. I don't know Dr. Terman, I think you paint a little too idealistic picture of things. I agree that we should respect patient's autonomy but sometimes the best we can and should do is support a surrogate.

    It is the Dora the Explorer example (credit Bob Arnold). I really don't enjoy the show but I will watch it if my 4-year old daughter wants me to. Likewise, while I may not want tube-feeding when I have advanced dementia, I might be okay with it do it if my daughter really wanted me to do it. I definitely would not want some doctor to look at my "My way cards" and tell my daughter that she is unfit to be my surrogate – just give me the damn tube in that case and leave her alone. Hopefully I will have done a better job preparing her ahead of time.

    I'd be eager to see a randomized trial of the "My Way Cards" though. Also, I'd love to hear more about how you actually go about "disqualifying" and "unfit" surrogate 🙂

  3. "I" don't disqualify an "unfit" surrogate, but there is a place on the Advance Directive that accompanies the Living Will that My Way Cards generate, to list those whom the PATIENT wishes to disqualify, and a section in my book where the qualities to look for in a proxy/agent are listed.

    I don't like the idea of tube feeding to make surrogates feel better. Neither would, I believe, Immanuel Kant. Two "sins": using one person to benefit another, and violating autonomy by blatant disregard of the patient's clearly expressed Known Wishes. However, if you Dan, wish to have an advance directive that says the following, I am fine with that: "I prefer no tube feeding, but am willing to endure its burdens if my _____ insists."

    Can we agree on that?

    Stan Terman

  4. This is a little surreal as I'm usually the one arguing for the primacy of "autonomy." I've even used Kant in a talk I gave.

    If you and Kant are truly correct, then it is a double sin for me to watch Dora the Explorer with my daughter. I'm going to run with that…

    In all seriousness, it sounds like what you advocate is using advance directives to encourage a lot of thinking and conversations before hand. Which is exactly what Sudore and Fried were suggesting. I'm skeptical that any document will ever cover everything and there's a chance my daughter (or whatever surrogate) will be in an uncomfortable position.

    The key statement in Alex's post is the "in the crunch of the moment" – there is a growing body of psychology literature that people make very different decisions when emotions are high. It may be very easy to ignore and advance directive during the "crunch" but, as time passes, perhaps the advance directive allows the level heads to prevail and the right thing to be done for the patient.

  5. Advance Directives are good to have — making actual decisions at the bedside of a loved one, even one who has an AD and has discussed his/her wishes, can be an entirely different matter. This is particularly problematic these days when — costs aside — there are medical therapies that can prolong life even in many of the most elderly and frail. We do not have a good understanding of “quality-at-the-end-of-life” or what might be a “good death.” In some cases, we have better, more humane approaches when it comes to an aged family pet than a loved one who’s days are limited in number.

    Does one withhold food from one’s 87-year-old mother with late-stage Alzheimer’s who can still take nourishment if hand fed? Does one tell one’s 92-year-old father with dysphagia to go ahead and eat/drink anything he wants, even though he is certain to aspirate some of it, develop pneumonia, and die? These are different decisions than withholding heroic, intensive-care treatments, such as intubation, emergency surgery, TPN, etc.

  6. Why is there no discussion here about POLST as a different documentation strategy for insuring that patients' wishes are followed? Also, is there not a danger that appealing to advance directives as a "cost saving" measure will end up being demonized– e.g., another version of "death panels?"

    Harry R. Moody, editor, THE SOUL OF BIOETHICS (published by the Healthcare Chaplaincy)

  7. Why is there no discussion here about POLST as a different documentation strategy for insuring that patients' wishes are followed? Also, is there not a danger that appealing to advance directives as a "cost saving" measure will end up being demonized– e.g., another version of "death panels?"

    Harry R. Moody, editor, THE SOUL OF BIOETHICS (published by the Healthcare Chaplaincy)

  8. Well this is a good conversation! Although I mostly said my piece above, I'll add a couple more thoughts.

    -"Leeway" of "flexibility" is a concept Sudore, Fried, and others have written about that applies to the conversation between Dan and Stan. Some people want to grant leeway to their loved ones to use their advance directive as a guide. Others want their directives to be iron clad, set in stone, "Ulysses" contracts (Guy Micco's told me you're a proponent of these Stan). Directives should allow people to stipulate the degree to which they want their preferences to be binding.

    -SB Leavitt raises some terrific points. Most directives deal with the rare decision in the elderly: sudden death, persistent vegetative state, etc. The more quotidian decisions int the elderly are as he notes: should we keep feeding grandma if she's hand fed? Should we fix her hip if she has advance dementia, falls and fractures it? Should we start dialysis? Advance directives were primarily designed to evaluate those intensive situations, not the everyday ones. We need a new sort of planning to approach these decisions. Surrogates and clinicians do not have great guidance about this in advance directives as currently formulated.

    -RE Harry Moody's comment: POLST forms are a major advance for advance care planning. BUT they do not provide guidance about the amount of Leeway a provider or caregiver should or should not have. As an aside, your book "Ethics in an Aging Society" is a great read – read big parts of it a few months ago.

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