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When Is It Appropriate to Ignore an Advance Directive? Is It Ever Appropriate to Ignore a Patient?

An 85-year-old woman with moderate Alzheimer’s disease who enjoys walking in her nursing home’s garden with her walker has fallen and broken her hip. An advance directive signed by the patient states a preference for “Comfort Measures Only,” and specifically states that she does not want to be transferred to the hospital. The physician believes that surgery would provide long-term pain relief and the chance to maintain some mobility.

What do you do? How do you reconcile her previously expressed hypothetical wishes in an Advance Directive with what is now a rather unanticipated scenario?

In a paper published recently in JAMA Internal Medicine, Alex Smith, Bernard Lo, and Rebecca Sudore developed a 5-question framework to help physicians and surrogates through the decision making process in time like this. The framework proposes 5 key-questions to untangle these conflicts:

  1. Is the clinical situation an emergency?
  2. In view of the patient’s values and goals, how likely will the benefits of the intervention outweigh the burdens?
  3. How well does the advance directive fit the situation at hand?
  4. How much leeway does the patient provide the surrogate for overriding the advance directive?
  5. How well does the surrogate represent the patient’s best interests?

So, how do the authors balance her previously expressed wishes with that which her surrogate may think is in her best interests?

Based on the framework, the paper argues that it is ethically appropriate for the physician and daughter to override the patient’s previously stated wishes in her Advance Directive and transfer her to the hospital for surgery.   The situation isn’t an emergency, the benefits of pain relief and quality of life with surgery likely outweigh the harms, the advance directives are not a perfect fit and they also grant the surrogate leeway, and the surrogate represents the patients best interest well.

Do you agree?

Eric Widera, MD is an associate professor and fellowship director at UCSF School of Medicine. He blogs regularly at GeriPal, a forum for discourse, recent news and research, and freethinking commentary about geriatrics and palliative care, where this post first appeared. This is part of a series of posts for “Code Discussion Week.”

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27 replies »

  1. I’m baffled how there’s any discussion on this issue. “No means no” … and frankly the rape connotation is apt. One reason for advanced directives was to ensure the physician can’t substitute their values / morals for the patient’s. If a patient went to the effort to fill out a valid directive, the healthcare providers need to respect it.

  2. She will have a lingering and painful death (decubitus ulcers, complications of anticoagulation or DVT/PEs, pneumonia, and all the other complications of being bedridden for 6 weeks, possibly in traction) without the hip repair. Doesn’t sound very comfortable to me.

    If there is clear documentation that the patient had the capacity for decision making at the time of the advance directive, and that they demonstrated adequate understanding of these risks, and still would not want a fairly routine surgery done, then the case is clear.

    Denial of the relief the surgery would provide her would be cruel. It should be discussed with her, depending on her mental status, and/or surrogates. If in doubt, involve the orthopedist and hospitalist who would have to care for her.

    I would not just turn my back on her because of a broadly worded, likely poorly informed, advance directive. We don’t get out of difficult decisions and being the patient’s advocate that easily.

  3. Found a troll! Off to the troll dungeon with you. Move smartly, we know what to do with your kind.

  4. Theresa, I am so sorry you are missing important information. At some point, every human organism dies. It’s natural. When it is evident that a person’s death is in the near future, hospice provides care to enable keeping the person comfortable and with the best quality of life for as long as possible. The idea of “death angels” has been spread by people with very bad information about how hospice actually works.

  5. Disagree. Whether or not there may be a legal loophole, the wishes of the patient should always come first. While the surgery “may” have improved the perceived QOL, putting an 85 year-old through the pain of surgery and possible risks is contrary to what they want and should be avoided.

  6. Respect the request. She may be old and terminally-ill, but if that’s what she wants, she deserves to get that, especially in her age.

  7. What does comfort care mean exactly in a medical context? My main issue here is the extent to which the surgery is likely to alleviate pain vs. other pain control options which don’t result in the patient sleeping most of the time? In the end, I think this case boils down to a benefit vs. burden judgment and what other reasonable pain control options are available that don’t require a surgical procedure.

  8. I also disagree. Someone who says “do not hospitalize” is pretty much of a minimalist. They could have a horrible and hellish time in the hospital and become more confused and distressed than in their current environment. Although I do agree with what MD as HELL says: “Ask her what she would like.” If she’s so far gone she can’t talk or something you can’t, but beyond that you might catch a good moment where you CAN find out her wishes and it’s worth a try. People do change their minds and she might be capable of indicating some wishes.

    But if she can’t, I can think that there could be circumstances wehre I would ignore an advanced directive, but this is not that one.

    When my mother after a broken hip was in lots of pain and they discovered there was cancer in the bone, they wanted to do palliative radiation. She declined it, went on hospice, hospice got her pain under such good control she wondered if she really had cancer, lived 6 months and did NOT die in pain. So how good was the alleged “palliation”? Clearly after the fact (unlike what I wondered at the time), she was better off without it as was her decision. She made the right call. So too I wonder about they “will be more comfortable if hip is repaired.” Maybe.

    A case would have to be a lot more clear-cut than this one for me to override such wishes. Unfortunately, too many people are like Theresa and want to “Always ignore the advanced directives.”

    I can understand the inclination to ignore it, but in these circumstances I think it should be honored.

  9. As a registered nurse who has cared for numerous patients who fit this example (dementia, previously ambulatory, breaks hip, comes to hospital) I can most definitely say that I disagree 100% with ignoring the patient’s advance directives.

    As others have mentioned, surgery and post op recovery outcomes are poor for any elderly person, but particularly for those whose cognitive functions are impaired. They are unable to understand any aspect of what is occurring to them.

    Anesthesia often leaves the dementia patient even more confused, often times combative. A person who is used to ambulating regularly cannot understand why they cannot get up whenever they want. They often stop eating, and so nutrition plummets, further impeding healing.

    They often cannot sufficiently participate in therapy due to cognitive issues.

    Hospital stays often lengthen into weeks as complications set in (slow/delayed wound healing, pneumonia, UTI).

    HONOR THE PATIENT’S WISHES!!

  10. Always ignore the advanced directives. The human organism fights to live and hospice death angels facilitated death is unnatural.

  11. The circumstances are neither hypothetical nor unexpected. How do you reconcile this? Start by asking her what she would like.

    Also this is a very unusual directive. Most have to do with heroic resuscitation. Treatment and resuscitation are not the same thing. The circumstances are different and the expected outcomes usually are different.

    Lastly, fixing the hip is usually more comfortable and conservative than not fixing it.

  12. Not knowing the whole story it is very difficult to comment. However if a patient was terminally ill then I would grant the wishes, because there must be nothing worse than letting them live the last few hours, days weeks suffering.
    Would I be able to make these tough if it was someone close to me, no I don’t think so I would need an outside party to help me through it

  13. Medical power of attorney for healthcare is a more flexible document IMHO. The caveat there is appointing some one who is able and willing to make the tough choices when needed.

  14. I also disagree. I do, however, struggle with abiding by the wishes of a terminally ill patient who, while in relatively good health, indicates his wish for CPR. Fast forward to EOL, with the patient unresponsive and actively dying. Should the family have the ability to override his wishes?

  15. I have to side with those who disagree. Either we are the owners of our own bodies, or we are not. Once it’s accepted that the patient’s wishes can be overridden by those “who know better” then there’s no end to how often and to what extent the patient’s wished can be ignored. One of our deepest held American values is the concept of self-ownership. It must be respected.

  16. High risk for delirium, poor candidate for rehab, daughter influenced by optimistic opinion of surgeon. If advance directive says do nothing but comfort, follow the directive.

  17. I disagree. If someone states that they don’t want something, then they should not get it. If I had signed something telling my family not to revive me (or something like that) and they decided to do so anyway, I think I’d be furious.

  18. I think that one needs to look at the overall intent of the advance directive. If the patient articulated a wish that in case of mental incompetence that no treatment should be instituted – I think that nothing should be done. (my own personal wishes would be similar if I had advanced dementia).

    If you look at survival of all elderly patients after hip fracture, the outlook is dismal – worse than most cancers.

    I do think that one needs to respect the direct and possibly inferred wishes in a living will. A will is not just words – it should be a guide.

  19. You provided a partial deck. There had to be more to the directive than what you wrote, but if that is what she said, it is not for you to over ride that. Her life will be misery regardless. Call in Kervorkian.

  20. Disagree also. Her surrogate is an emotional daughter. Surgery outcomes at 85 are not certain and she may not outlive the recovery, especially in a hospital.

    Honor her wishes.

  21. Disagree –

    Because the advanced directive movement is just beginning to gain broad momentum. While mistakes will be made this is no time to retreat from honoring the patients explicit self expressed desires/interests. This is a proverbial slippery slope.

    The answer is rather to educate patients to write better advanced directives.

    Dr. Rick Lippin
    Southampton,PA

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