Advance Directives 101 – Do Not Call 911

This is the first in a series of posts on the nuts + bolts problems we face in health care. As I stated in my post initiating this effort, my goal is sidestep the current health care reform maelstrom and discuss specific issues that in themselves pose a discrete problem to us relative to health care quality, cost, or outcomes. Although policy reform is needed to solve any number of the nuts + bolts problems we face in health care, many of these problems require only changes in our behavior. From my perspective, if we are going to even start to move this mountain we are going to have to foster change from within the system. That change is going to have to come from all of us as a society and as patients, families, health care providers, health care organizations, and influential health care managers and executives. It’s not just about policy. It’s not about the government ‘against’ the private sector. It’s about each of us taking our own personal and social responsibility to do the right thing. The problem in the current political climate with the health care policy debate is that the real issues all too often get subverted. The travesty that momentarily turned end of life issues, quality of life, and palliative care, into ‘death panels’ is Exhibit A. It has been well characterized on The Health Care Blog by Bob Wachter with references to excellent articles in The New York Times and Joe Klein’s piece in Time. Like so many issues in health care reform the hysteria that ‘government’ was posed to step in and dictate our options as to how we would die and what final options we might have is sadly misplaced. Reality holds its own sadness because too few of us get to die the death we would choose and when we do choose our death it’s the current health care system and our trusted friends and family who inadvertently subvert our best intentions. From a nuts + bolts perspective reform is not going to begin to solve this problem. The facts are pretty clear: we spend too many precious health care resources unnecessarily late in life; we decide far to late what we do and do not want modern medicine to do for us; and, far too few of us get to die with the peace and dignity everyone deserves. The solution lies not in the health care system, nor does the blame. The solution and the blame lies with each of us and until we are willing and able to rationally decide what we do and do not want modern medicine to do for us, someone else will be forced to. Those decisions, all of them well intended, will inevitably be made under duress. Death does not need to, and should not be that way. Let’s not confuse this with ‘rights’ or a ‘right to die.’ The concept that we have a ‘right’ to something just muddies the whole health care debate. The issue is respect. How do we respect the dignity of someone who is facing death with the kindness, gentleness, and support they deserve? Blame is easily passed around. Jane Brody, who does an otherwise excellent job of patient advocacy in her Jane Brody’s Guide to the Great Beyond blames a fair amount of the problem on physicians. Ms. Brody states that while we are all ‘death deniers,’ those of us who are physicians ‘are the worst of the lot’. She goes on the say that, ‘Many people go into medicine because they are so afraid of death.’ I disagree, but when she goes on to state that there is insufficient training in medical school to prepare us for the responsibility we will face, I don’t fault her. From my front-line emergency room perspective, the problem we face is much simpler and the blame more universally shared. The problem is that at the time of crisis, the time when life-or-death decisions have to be made by each of us as a patient, friend, family member, care provider, or physician, our sane, rational individual wishes as a patient are not represented by anyone in the room. As patients we have abdicated that responsibility to someone else, often someone who has never met us before, and has no way to know who we are, what we believe, how our faith informs us, or what we want. In addition, in pain and frustration we may ask a friend, family member, care provider, or physician to do something that conflicts with what they believe or their faith informs them. Without our explicit consent its unfair to ask others to take the responsibility for these often painful and heart rending decisions. In the end (literally) no one is satisfied with the outcome. The obvious solution seems to be that each of us should make a rational and informed decision relative to death before anyone else has to make decisions for us. It’s surprisingly simple – how much and what kinds of medical care do we or do we not want? The general advice goes something like this: 1) talk with our doctor and decide what level of medical care we want given a set of health care scenarios; 2) have a lawyer draw up a Living Will for us and sign it; 3) fill out a set of advance directives; 4) identify one or more people we trust as our durable power of attorney to make medical care decisions for us if we are incapacitated; and, 5) discuss all the above with our family. All of this should be done, and a search of Google, Yahoo!, or Microsoft’s Bing for ‘advance directives’ brings up links to excellent resources that can walk us through the process. The nuts + bolts problem, however, lies in whether or not we make those decisions and whether or not other people, when we are incapacitated, adhere to those decisions. Ezekiel Emanuel, demonized in the ‘death panel’ hysteria, was the senior author on a very important paper in The New England Journal of Medicine that showed that patients would refuse ‘life-sustaining treatments in 71 percent of their responses to options in the four scenarios (coma with chance of recovery, 57 percent; persistent vegetative state, 85 percent; dementia, 79 percent; and dementia with a terminal illness, 87 percent),’ but that less than 18% of respondents actually had advance directives. Even more disappointing is that Hardin and Yusufaly point out in the Archives of Internal Medicine that 65% of decisions by physicians are not consistent with the patients advance directive. The sample sizes are small and the cases are hypothetical, but it is consistent with what we see in day-to-day medical practice. Then, Ditto, et. al. point out, also in the Archives of Internal Medicine, that advance directives had essentially no effect on the accuracy of decisions by designated surrogates (for example those friends or family we designate as our health care Durable Power of Attorney). So we have a significant majority of patients who want to limit their medical care if incapacitated but they never get around to specifying that fact. To add insult to injury, in the majority of cases even when we do designate our wishes, physicians and our own designated friends and family potentially ignore them. On the other hand, the article from Ditto is not completely negative in that it shows that our chosen surrogates are not completely wrong in the decisions they make even if they do not know our explicit wishes. To spin that a little better, they often make the right decision. It is a situation where families and patients might know better. In this light, Singer, et. al. in another article in the Archives over a decade ago, called for us to rethink advance care planning (ACP). The authors’ Introduction and Conclusions are telling, particularly in light of the ‘death panel’ hysteria:

Introduction: Death is often preceded by the use of life-sustaining treatments, but patients are often incapable of making decisions about treatment at such times. Therefore, people sometimes use advance care planning (ACP) to make these decisions ahead of time. Four traditional academic assumptions about ACP have been advocated in various sources in the medical literature: (1) the purpose of ACP is preparing for incapacity; (2) ACP is based on the ethical principle of autonomy and the exercise of control; (3) the focus of ACP is completing written advance directive (AD) forms; and (4) ACP occurs within the context of the physician-patient relationship.

Conclusions: The traditional academic assumptions are not fully supported from the perspective of patients involved in ACP. The patients we interviewed stated that (1) the purpose of ACP is not only preparing for incapacity but also preparing for death; (2) ACP is not based solely on autonomy and the exercise of control, but also on personal relationships and relieving burdens placed on others; (3) the focus of ACP is not only on completing written advance directive forms but also on the social process; and (4) ACP does not occur solely within the context of the physician-patient relationship but also within relationships with close loved ones.

It all boils down to an issue of communication. We should not look at advance directives as the sole outcome of advance care planning but rather should understand that when all is said and done what we wish must be well understood, and our friends, family, and physicians must promise that they will honor our wishes. Yes we need advance directives, yes we need them in our wallet, on a necklace or bracelet, and if we’re permanently incapacitated, the best thing we could possibly do is have the following tattooed on our chest: Do Not Call 911, Do Not Resuscitate, No Antibiotics, No Feeding Tube, Please Keep Me Pain Free + At Peace. Perhaps our insurance company or fellow taxpayers could reimburse our family for that? In stark contrast to the hysteria generated around ‘death panels,’ each of us can ultimately control how we die, other than through trauma, natural disaster, or violence, no matter what the intent of anyone else or legislation or the fear of governmental mandates. It’s not an issue of correctly filling out a questionnaire or just going over a set of pre-canned scenarios. Life and health care are never that simple. To reiterate, it’s about communication. Only if we chose not to communicate through advance directives or open discussions do we relinquish those rights. Yes, talk to your doctor, but far more importantly talk with your friends and families. When I sit in the physicians’ workroom in our emergency room I sit with physicians who are liberal, middle-of-the-road, conservative, democrat, republican, libertarian, atheist, Catholic, born again Christians, reform and conservative Jews, Buddhist, Muslim, and every belief, flavor, and shade of color imaginable. What is critical about us as physicians, however, is that unlike politicians and religious leaders we are not in the emergency room to hold you to our beliefs, faith, and politics. As a profession we treat patients according to their beliefs and faith. It is a matter of professional ethics and how we are trained. If you are a Jehovah’s Witness and do not want a transfusion on religious grounds we will not honor that request, we will do everything in our power to help you without violating that tenant. In fact, Jehovah’s Witnesses have been instrumental in changing how we deal with transfusions and when we do or do not give them no matter what your faith. They have taught us things that we and other patients need to forever thank them for. The same professionalism applies to any decision patients make about how they want to be treated and about how much care they do or do not want us to provide. We will do anything to help someone even if it’s to respect their right to decline intervention. We all have heartfelt stories but one that I will always remember is a patient who came in with their family unconscious in respiratory distress and was emergently intubated. When the patient woke up a short while later, on a ventilator, the patient let the attending critical care physicians know that they wanted the endotracheal tube removed immediately. The patient, according to herself and her family, had fought her disease long and hard and did not, under any circumstances want to be on a ventilator again. The tube was removed, the patient was left with her family and she died peacefully. Medical science could have prolonged her life and she might have gotten back off the ventilator but she had been where no one else in that room ever had. She was profoundly courageous and I didn’t see a single physician, nurse, respiratory therapist, or anyone involved who did not have the utmost respect for her and her decision or who did not have tears in their eyes. Remember, please, that the physicians who must work with with each of us, our family, and our friends when we die are often not our personal physicians or the sub-specialists who know us and have been treating us. It’s not the pat scenarios seen on advance directives templates. It’s the messiness of auto accidents, natural disasters, cancer, stroke, dementia, heart disease, and the vagaries of life that hit us. Fill out advance directives, such as the template provided by groups such as www.medicaldirective.org, but then go the next step and talk about your faith and your core beliefs with someone who shares them or will respect them and designate that person as the ultimate decision maker, available 24 hours a day, to make critical life or death decisions for you. Put that person’s name and contact information, again with 24 hour availability, in your wallet, on a bracelet, necklace, or tattooed on your chest. I’m not kidding about the tattoo, particularly if we fall victim to such severe head injury or insult, dementia, or incapacitation we would not want to burden anyone else with our care. And let’s be careful of placing our moral or ethical judgement on others. This does not have to be, unless any one of us so chooses, about a right to die or euthanasia. This is about how much medical care each of us does or does not want. For example, antibiotics. It seems easy, ‘Yes, sure, I would want antibiotics. Why not? That’s an easy decision!’ In reality, however, it shouldn’t be. Why shouldn’t we choose, of our own volition, to die peacefully from a commonly and effectively treated illness like pneumonia or a urinary tract infection if we are otherwise incapacitated? If I am brain injured or demented, bed-bound, and cannot recognize my family why should I have to have 911 called when I get a cough and a fever? On the other hand if I want that care that also has to be respected as a valid choice. That is what we all need to talk about and again, I stress to each and everyone to talk to about your faith and your core beliefs with someone who shares them or will respect them and designate that person as the ultimate decision maker, available 24 hours a day, to make critical life or death decisions for you. There are many books and texts that can assist us in those discussions. My own personal bias is Sogyal Rinpoche’s The Tibetan Book of Living and Dying but there are many others. I am a great fan of film and there is an entire genre, or rather multiple genres that touch on this subject but two recent films, both from 2006, come to mind, the director Susanne Bier’s Danish film Efter brylluppet (After the Wedding) and the director Sarah Polley’s Canadian film Away from Her. After the Wedding is ultimately about thinking about someone other than ourselves and Away from Her about what it’s like to lose someone to dementia before they die. When you watch Away from Her remember that Sarah Polley was only 26 years old when she wrote and directed it, based on Alice Munro’s short story, The Bear Came Over the Mountain. One of things that gets in the way of our thinking clearly and rationally about death is the ethical and moral quandary we face when we place our intellect or own faith in the way of what should be our respect for each other’s individual beliefs. We belittle death when we think we can apply our self-righteous superiority to someone else. The holocaust, so painfully miscast in the current health care debate, remains the ultimate reminder of the horrors we have wrought with that self-righteousness. There are many, many phenomenal films about the holocaust, but when it comes to death and to the moral and ethical decisions we each must make for ourselves, the director and actor Tim Blake Nelson’s, The Grey Zone stands out. When you are cocksure of yourself, when you know in any situation what you would do, when you think your moral and ethical judgment are above reproach, sit down and watch this film. Respect people, respect their beliefs, and have the utmost respect for them when it comes to death. Communicate. It’s critical and it’s the personal responsibility of each of us. Rick Peters is an emergency physician, founder and former CEO of the EHR vendors Oceania (now Cerner) and iTrust (now Medplexus), and the PBM PTRX. He has been integrally involved in health care standards and health care consulting.

11 replies »

  1. Margalit,
    You are absolutely right about our sub-conscious fear of death, but unlike animals, humans can control their behavior, even under dire circumstances. Every day a person risks his or her life trying to save somebody else’s. Or a suicide bomber blows himself up… Perhaps, this is a bad example, but it still proves the point.
    In the past, it was unethical, and sometimes illegal, to inform terminally ill patients about their prognosis. Now, doctors are obligated to be completely clear in that respect, despite the emotional pain it causes, so the patients have a chance to make necessary arrangements.
    I guess, a tattoo was a sort of oversimplification on Rick’s part. It could be a bracelet, or advance directives in PHR, once we have it, or both.
    “…Besides, decisions like these are constantly changing based on one’s circumstances. You often hear the young invincible state that “I would rather be dead than in a wheelchair”. Is that an acceptable AD? Should the thirty year old unconscious accident victim be left to die if that was their wish when they filled the paperwork?”
    Acceptable to whom? Every person has his/her own notion of what he/she values in life. It may change over time, so that advance directives. And, of course, counseling should be available to those who seek it because our choice will have irreversible consequences.

  2. This is indeed an amazing piece. But…. and there is always a “but”. There are technical difficulties and emotional difficulties and inherent difficulties due to humans being just an animal species.
    The technical difficulties arise when the 5 steps suggested above are looked at carefully. How many of us have the required prerequisites to complete the 5 steps, including the legal process? Not many. And for those with enough resources and education, how likely is it that all these documents will be available in an emergency?
    People are afraid of death. That is a given. No amount of personal responsibility will change that. We are the only species that must confront life knowing that it will end. We have multiple mechanisms, I guess genetic, to ignore that knowledge most of the time. Otherwise would anybody give birth to a child that is doomed to die? Why would you get out of bed every morning and work hard on something that is as ephemeral as you are? Forcing people to face mortality, particularly when they are young and healthy, is not an easy task. Having tattoos on your body that remind you every day of the human condition and proximity of your own demise will have to be accompanied by heavy doses of antidepressants.
    Besides, decisions like these are constantly changing based on one’s circumstances. You often hear the young invincible state that “I would rather be dead than in a wheelchair”. Is that an acceptable AD? Should the thirty year old unconscious accident victim be left to die if that was their wish when they filled the paperwork?
    So maybe these discussions pertain to the terminally ill, where no miracles are possible anymore, or to very obvious and specific questions like Dr. Emanuel posed.
    If that’s the case, then I would like to add another option to ACP. People should be allowed to request more than just freedom from physical pain. They should be allowed freedom from emotional pain and agony. They should be allowed to choose not just how it all ends, but also when it does.

  3. I live in fear of ending up in a hospital, where people with different religious beliefs can decide whether to honor my wishes, or not. The new laws that are being debated and passed that allow any member of a medical staff to decide to treat or not treat based on his or her religious beliefs are frightening. I profoundly hope that doctors and other medical personnel will fight those laws!

  4. Great piece that every person should use to discover their own end-of-life wishes and the crafting of their own living will. People need to have the ability to understand what medical interventions will cure them, extend their life significantly and what that life will look like, or just make them comfortable while the inevitable takes place. But we should always remember that it’s the patient who should ultimately make these decisions.
    Too bad that Republicans didn’t engage in intellegent discussion to make whatever point they were trying to make, instead of just playing the politics of scare mongering for political gamesmanship.

  5. Great piece, Rick.
    There’s lots to chew on here, and I’m going to link/discuss at my own blog on nursing education for end of life care.
    Most notably, these are issues that we should all discuss with loved ones, family, and friends. And by that I mean an ongoing discussion about what’s important to us, and about how the things that are important to us will likely change with time and circumstances.
    I recommend a tool called Five Wishes to help guide the discussion, to give it context.

  6. I would also add this excellent piece from the Annals of IM:
    Such a tough subject, and I often feel conflicted. AD’s are often misinterpreted, vague, subject to many shades of gray, and in study after study, seem to be mispresentative of patients wishes. While they are the best we have, if ADs were a pill (at least based on data), we would not prescribe them.
    I always think back of incredible story of surgeon Dr. DeBakey. He had an emergency aortic repair at 97 and lived, and the operation went against his prior wishes btw. His wife forced the docs to operate and he was grateful in the end. Read the story, such an ethical conundrum.
    A perfect example of why this is tough stuff.

  7. How refreshing to hear of “personal responsibility” again. It seems such a long time since that has come across my screen. Wouldn’t it be nice if it became more PC.

  8. I love finally hearing people talk about the personal responsibility that lies within each of us to make our healthcare system more responsible and effective. We all need to think hard about how we want to live our lives, how we want to age, and also how we want to die – and we need to work together on solutions that make that a reality. I like to call this Personal Social Responsibility. As patients and consumers of healthcare services, we have to behave differently and communicate better if we are to achieve healthcare reform that improves quality while holding costs and the deficit at bay. For me, this means being healthier, taking responsibility for the value and costs of the healthcare services that we select, and becoming more proactive as patients.

  9. Well said. I believe there is a typo however in the sentence:
    “If you are a Jehovah’s Witness and do not want a transfusion on religious grounds we will not honor that request, we will do everything in our power to help you without violating that tenant.”
    I think the author meant to either delete the “not” (we WILL honor..), or meant to add “only” (we will not ONLY honor..)
    I can personally add to Dr. Peters’ exhortation, as an M.D. experiencing the cancer death of my father. He had an advance directive and the home hospice people were WONDERFUL and instructed us carefully what to do when he died, especially not to call 911 but the funeral home. I highly recommend home hospice care to those whose loved one is known to be terminal; you will not regret it. We felt quite secure knowing we were keeping him pain free and fulfilling his last wishes, at a very painful time for us.