According to the American Bar Association’s Commission on Legal Problems of the Elderly, the notion that everyone should have a living will is a “myth.”
In theory, a living will gives healthcare providers a window on the patient’s wishes regarding end-of-life care, telling caregivers whether he wishes to be resuscitated, intubated, or artificially hydrated.
In practice, doctors who deal with the dying say that such wills rarely capture the complex realities of being critically ill. An article published today in American Medical News quotes Angela Fagerlin, an associate professor of internal medicine at the University of Michigan Medical School and co-author of a study of living wills published in the Archives of Internal Medicine: “There are so many contingencies in medical scenarios that you can’t put them all down in a living will. You’re putting a lot of undue pressure on surrogates to correctly interpret advance directives.”
Even the patient who makes out a will may not know what he wants. After illness and hospitalization, three in 10 patients adjust their views, desiring more or less aggressive care than they previously thought they wanted. “If patients’ own preferences are so unstable, then how reliable are their advance directives as a guide to what they would have wanted?” AMNews asks.
“People have a hard time anticipating the care settings in which they’ll face decisions in the future,” says G. Caleb Alexander, assistant professor of medicine at the University of Chicago Pritzker School of Medicine. “You can quote Yogi Berra: ‘It’s tough to make predictions, especially about the future'.”
“Advance directives are ‘well-intentioned,’ Dr. Alexander adds, “but they often fall short of the mark. There’s a wealth of evidence, literally hundreds of studies, that document serious problems with the design and implementation of advance directives."
Patients themselves seem to have reservations about their own living wills. 62 percent of patients who have wills do not give them to their physicians. Perhaps this is all to the good since 64 percent of patients’ living wills do not cover the clinical realities that the patient faces. This helps explain why 25 percent of patients receive care inconsistent with their living wills.
Usually, when the physician does not follow an advance directive, he is trying to act in the patient’s best interest. He also must assess the risk of not treating a patient who could have survived. Death is not cut and dried: is the patient very sick, or is he dying? What if the physician is too quick in deciding that further care would be futile?
In a 2008 paper written for the Center for Advocacy for the Rights and Interests of the Elderly at the University of Pennsylvania’s Law School’s Lynch et al. outlines the dilemma:
“On one hand, saving a patient’s life, even against the patient’s wishes, carries a risk of only limited sanctions or liability; on the other, choosing not to treat a patient and thereby allowing him or her to die risks a malpractice suit with the potential for significant damages, increased insurance payments, and harm to professional reputation.” The authors quote one hospital administrator “stating starkly that she would ‘rather have a wrongful li[ving] claim than a wrongful death claim,’ and as a matter of risk management, it is quite difficult to disagree with her assessment.”
More importantly, the physician faces an ethical conundrum: “Given the choice between not saving patients who would prefer to be saved and saving patients who would prefer not to have been, it is certainly reasonable to choose the rule that would result in the least offensive mistake. . . . The question remains, however—which is the least bad mistake in this context? Whether unwanted life or unwanted death is the worse error is an incredibly difficult metaphysical question not amenable to straightforward empirical analysis.”
Surrogate Decision-Makers
Dr. John Lantos, of the Center for Practical Bioethics in Kansas City, Missouri, believes that whether or not a patient has a living will, it is most important that he name a surrogate decision-maker who has durable powers of attorney for health care. About 40 percent of hospitalized patients have some diminished decision-making capacity, which means that they cannot take the realities of their present situation into account. “Having someone you trust, maybe a couple of people at the bedside who know you and can deal with the up-to-date situation, is probably the next best alternative [to being able to ask the patient what he wants],” Rebecca Dreser, professor of law and medical ethics at Washington University in Missouri, told AMNews. When patient surrogates tell physicians what they believe their loved ones would have wanted, the process is called “substituted judgment.”
But this is far from a perfect solution. Studies show that surrogates’ substituted judgment is correct in only seven of 10 treatment scenarios.
Where palliative care specialists are available, their training can be invaluable in helping families make decisions for loved ones. While most physicians are not taught to talk about death and dying, palliative care specialists know how to approach the subject realistically and with compassion,
Before the Crisis Hits
Ideally, physicians should try to talk with patients and families about end-of-life decisions before a crisis hits—particularly in the case of patients suffering from congestive heart failure, cancer or other potentially life-threatening illnesses.
AMNews outlines the steps: “At the first visit, describe the importance of advance care planning and offer the patient information to review. At the second visit with the patient and a likely health care proxy, ask for reactions to the printed information. Address reactions and help the patient define acceptable treatment outcomes in specific, functional terms to set goals of treatment.”
It all sounds so simple. But it really isn’t.
For example, the article cautions: “Avoid asking what to do if the patient’s heart or lungs stop working, because a valid answer requires more understanding of resuscitation than most patients have.”
Instead, “define the patient’s tolerances for specific treatments in terms of care the patient has already experienced in the hospital or the intensive care unit.” Of course, if the patient has not received intensive care in the hospital this will not be possible– a fact that underlines how hard it is for patients to know, ahead of time, what they will want.
Dr. Lantos emphasizes “working with surrogates to learn more about the patient’s life, in an attempt to take actions that respect the patients’ dignity and personalities” If the surrogate talks about the patient and feels he is judging the situation through his or her eyes, this can makes it easier, Lantos suggests. The surrogate can tell himself, “I’m not letting mom die, I’m simply carrying out her wishes.”
But in the end, death takes us to the edge of a precipice. It is so commonplace—it will happen to each of us—and yet it remains so strange that we cannot fathom it. In the face of the unknowable, “doctors and families muddle through as best they can” says Lantos—“and it is time ethicists acknowledge the clinical reality.” There is no legal form that will simplify death.
Yes-The entire death and dying issue is fraught with complexity.
Yet our failure to not openly and adequately address this very basic issue has been among modern western medicine’s most important ommissions.
This is why the growth and funding of Palliative Medicine must go forward.
In June 2003 I suggested that Palliative Medicine be used as a model for all medical specialties for at least six reasons-
Palliative Medicine-
1)Recognizes the miracles of medical technology but by definition also recognizes its limits
2)Is interdisciplinary in that teams of physicians, psychologists, sociologists, theologians, ethicists and others deliver integrated “Holistic” Care to the dying patient
3)Actively invites and involves the patient and the family in health care decisions and delivery
4)Invites a dialogue of the importance of spiritual and ethical issues in Medicine
5)Requires a discussion on confronting the limits of health care expenditures
6)Respects and promotes the concept of quality of life and death and the inherent dignity that all patients deserve during any interaction with the Health Care System at any stage in the human life cycle.
“In every society the dominent image of death determines the prevalent concept of health”-(Robert G. Olson, Encyclopedia of Philosophy, 1967)
We have a long way to go to “de-commoditize” death in America
Dr. Rick Lippin
Southampton,Pa
Based on my own experience, both as a relative and as a provider, I find this exactly right. I am always a little amused at non-medical people talking about living wills and other things like that.
The take away lessons are that families, even fairly young families (bad things do happen) need to discuss end of life issues with each other, since in real life a lot of the decisions will be made by your spouse, children, or parents, not based on a piece of paper. The paper can help in some cases, especially if conflicts arrise in the family, but in the end your closest family members will be asked to make the decision.
Second, if you or a loved one do end up in a situation where you are facing these decisions soon, enter into direct discussion with your main provider about end of life issues, and include your family. If you find you cannot enter into this kind of discussion, you may need a different provider.
Finally, remember the old medical adage, “no one comes into the ER a no-code.” Emergency providers will always begin care with the goal of saving the patient. The possiblity of stopping that only occurs when things calm down a bit later on.
This is but one topic which is critical for every person to be empowered. However, the physician and nurse should rightly be involved in the discussions so that they understand the patient’s point of reference, their readiness to learn and their perceived needs, desires and wants around resuscitation and aggressiveness of treatment. How can patients be given appropriate advice and support when providers aren’t even included in this part of the patient’s life?
Not to beat a dead horse, but these discussions are not reimbursed by third party payers, regardless of how central they are to health care and well-being.
An excellent white paper by the NY State Nurses Association about Advance Directives provides an overview of professional nursing standards of care and practice and the ethics around this.
http://nysna.org/practice/positions/endoflife.htm
The care of my patients near the end of life were (for my dad) and are, for my mother, ethically challenging. There is that balance of extremes, treat at all costs on the one hand and withdrawal of potentially beneficial treatments and let them go, on the other. It was much easier to make that decision for my wife.
Passive euthanasia was a heart-wrenching decision I had to take on my dad. Yes, it was morally justifiable, but some ethicists would argue there is no morally relevant distinction between active and passive euthanasia. But in the end, both for my dad and my wife, it brought about peace from this earth, at “their” request.
nice article dealing with the nuances and complexities dealing with dealth in the medical world.
As a general rule, those who are at peace with the concept of death and dying, and their family is on board, (the whole circle of life thing) tend to do well with the dying process. Living wills don’t usually add much.
Those patients/families who are not at peace with it, haven’t thought about it, or are scared senseless about it, are the ones who often make it a frustrating experience for all. (and often expensive).
One thing families (and physicians, too) sometimes don’t understand is that withdrawall of support is ethically no different than never providing life support in the first place. So there nearly always is time to think and talk about these things if the family is unsure or in conflict about what to do.
Maggie,
Excellent post.
I want to cite two papers from Annals of this subject that are really worth reading. The second talks a bit about patients unburdening their families–their exact wishes not being as important as the peace of mind of their family. This “unburdening” focus is a new take for docs.
Patrick is right on as well. ADs are never a check box. They are wickedly time consuming, nuanced, and difficult. The AMA News also points out that 40% of hospitalized patients lack the capacity to make EOL choices. For those who are not familiar with these situations, I can only tell you that this issue is one sticky wicket.
Brad
http://www.annals.org/cgi/content/abstract/147/1/51
http://www.annals.org/cgi/content/abstract/149/1/48
Everyone–
Thanks for your comments.
It strikes me that when we get down to the essentials of health care–death, dying, life, and effective care–we tend to agree. We share the same goals.
But when we become tangled in the thicket of how to get there, we disagree–and sometimes we attract ideologes who believe that there is only ONE WAY to reform care.
(I don’t know what the Right Way is. In truth, I’m beginning to suspect that we will need many pilot project, experimentation, and flexibility, recognizing that what works in one part of the country may not work in another)
At the same time, I do think we have to argue about the policy. But tonight, I’m very glad just to agree about the moral issues.
Brad–
Thanks much for the links. I agree that, as the first article puts it: “Advance directives simply presuppose more control over future care than is realistic. Medical crises cannot be predicted in detail, making most prior instructions difficult to adapt, irrelevant, or even misleading. . . The existentialist Albert Camus might suggest that physicians should warn patients and families that momentous, unforeseeable decisions lie ahead. Then, when the crisis hits, physicians should provide guidance; should help make decisions despite the inevitable uncertainties; should share responsibility for those decisions; and, above all, should courageously see patients and families through the fearsome experience of dying.”
Although I believe I am far from the end of my life,I have talked to my twnety-something children about this. We all agree that my daughter, who is tender-hearted, would find it extraordinarily difficult to make a decision.
My son, who is very much like me, feels comrfortabble with it. As Emily puts it: “Michael could channel you.” (My husband could also do this, but like most women, I will probably outlive my husband.)
I’ve also made it clear to Michael that, if I’m that sick, he can’t make a mistake. I’m not that interested in longevity; I just want to avoid a horribly painful, terrifying death that would upset the three of us–and haunt them.
Chris– You wrote:
“One thing families (and physicians, too) sometimes don’t understand is that withdrawall of support is ethically no different than never providing life suppolrt in the first place. So there nearly always is time to think and talk about these things if the family is unsure or in conflict about what to do.”
This is wise advice, and something that people need to take in. There is time to think things through before making a final decision about end-of-life care.
pcb– I agree. Families who have come come to grips wiht deate–often by talking about the inveitable before a crisis hits– are in a much better position to grant their loved ones peaceful deaths
Annie– I agree that health care teams (doctors and nurses) need to be prepared to address these issues.(Palliative care is always a team sport that includes specially trained nurses as well as doctors.)
And definitely, we have to begin paying all health care providers for the time involved in counseling dying patient and their families.
This is a major reason to move beyond fee-for-service, and put providers on salary, so that they are paid for everything they do over the course of a day.
Patrick– That is a good reminder about the ER. It’s the nature of the situaton. ER’s exist to save people.
At the same time, is there anything that a family can do in a situation where the ER is ramping up to “save” a dying patient?
Dr. Rick–
I totally agree. The best way for us to deal with end-of-life care in this coutnry is to have palliative care teams in evey medium-sized and larger hospital.
If Medicare began to pay a decent reimbursement for pallaitve care, in many cases it would pay for itself (by keeping patients out of ICUs).
More importantly patients could be saved form a world of suffering.
I think Medicare has to push medical schools to make palliative care (or a course that deals with death and dying) a requirement for all would-be doctors. And those who have the strength to go into palliative care need encouragment in the form of loan -forgiveness program.
We also need to encourage medical schools to train more palliative care specialists.
Meanwhile, perhaps we could put a cap on (or lower) the nubmer of dermatology residencies? Does the coutnry really need more dermatologists–or radiologists?
Gregoy-
When responding, I accidentally skipped over your comment. Then, I was thinking about your comment (which was memorable) and I realized I hadn’t responded.
You wrote that for your loved ones “peace from this earth, at ‘their’request”
was the best you could do.
I believe that is all any of us can do when faced with the death of a love one. Peace, liberation from the human condition on this earth –and honoring the dying person’s wishes. I don’t see what else we can do.
But it is all very, very hard.
Folks:
I am curious how you may respond to this alternative to expensive care at the end of life, that would be covered by medical insurance.
Allow the insured and/or the family to either accept medical care, which costs 10x, or in lieu of the medical benefit, accepy a death benefit of 2x.
Don Levit
Don–
I don’t think we want to pay people to die (or, worse, pay their families to pull the plug on them (stop treatment).
And we certainly don’t want anyone (insurers, Medicare or anyone else) profiting from hastening someone’s death.
Consider the dilemma for a 30-year-old African American man dying of cancer. He has three children, ages 6, 8 & 10; his family has very little money; his wife never finished high school and her employment prospects are bleak.
Probably he would feel that he should take the money and leave it to his family. On the other hand, that means leaving his children sooner. (With chemo and other treatments he might live another year.)
Poor people would be under much more pressure to take the money.
How would the African-American community feel about a society that pays black men to die sooner–while very wealthy 70-year-old white men aren’t even tempted to take the money?
I think the word “genocide” would come up pretty quickly.
I wonder how many patients, especially among the elderly, who find themselves in an end of life situation don’t have a spouse or other family member to act as their healthcare proxy. Or, if they have a spouse, what if the spouse is not competent to make such decisions?
I continue to think that living wills are helpful and add value and insight into the patient’s wishes for both family members and providers. Terry Schiavo was a high profile example of what can happen when there isn’t a document or other clear evidence of what she wanted and didn’t want. General directions like no heroic surgical interventions if the prognosis is for six months of remaining life expectancy or less, no feeding tube or ventilator, treat pain aggressively, etc. are useful. By contrast, if there is no living will and the patient never articulated what care he wants and doesn’t want in an end of life situation, what is a family member or provider supposed to do? Providers, who fear possible litigation are going to err toward too much care, in all likelihood, especially if they get paid more for doing more.
Doctors in other countries generally think we are way too aggressive in our approach to end of life care and don’t know when to stop. Do doctors here really think we would be better off if there were no such thing as living wills? Just because living wills are imperfect doesn’t mean they’re worthless or counterproductive. Healthcare proxies and living wills are useful. I think as many people as possible should have both.
Barry–
All of the doctors on this thread (Patrick, Brad, Chris, pcb (who I think is a doctor) are telling you that living wills just aren’t very useful.
As the post explains: often doctors and hospitals ignore them (the actual situation, in all of its complexity, is not captured by teh living will and so they have to act in what they think is the patient’s best interest).
Patients change their minds.
Patients don’t give the living will to their doctors.
Both the doctors I have talked to and virtually all of the literature on the subject agrees: despite great hopes for living wills, they have turned out to be ineffective and often irelevant to the reality of dying.
This is a great topic and discussion. I would like reinforce the concept that while advanced directives for healthcare may be changed or not completely followed, the real point of them is to prompt people to have discussions about their wishes for extreme care with their family or others who they entrust to make decisions for them. The value of this discussion has been pointed out by others, and is one of the missions of the Schwartz Center (www.theschwartzcenter.org), and it is something I’ve written about, including how it can improve the quality of care and should be taught more to medical students and residents. (See http://www.healthpolcom.com/blog/2008/11/20/proposals-for-expanding-the-full-range-of-compassionate-care/)
I would also like to pay tribute to Congressman Sander Levin from Michigan, who I had the privilege to work for in the 1990s. He was the author of the Patient Self Determination Act, which requires hospitals, HMOs and others to provide information on advance directives to people when they are admitted, enrolled, etc. Working for him helped me understand the educational and communications promoting value of advanced directives, (a.k.a. living wills).
Maggie:
I understand my idea has a controversial component.
Introducing the option of a life insurance component, changes the dynamics of the decision, in my opinion.
For example, let’s say you have an insured who says, I have been paying premiums all this time. The policy has $5 million of benefits. By golly, I deserve to take this to the max,if the medical service is a covered benefit.
He does not exercise the option of a lower death benefit.
However, you may have another person, who does not envision the extra year or two as that big of a deal.
In fact, he believes the situation is a win-win to accept a lower death benefit in lieu of a much higher, somewhat futile, medical benefit.
In my mind, that person can be seen as very altruistic (as well as realistic).
Don Levit
Michael Miller, Don & Barry
Thanks for your comments–
Michael & Barry–
I agree entirely that the most useful thing about a living will is that it can be used to kick off a conversation between the doctor, the patient and the patient’s family.
In the course of that discussion the doctor can get a much better “feel” for the patient and what he or she would want when the doctor is confronted with the messy
realities of critical illness that a form cannot capture.
Barry- in this sense, I agree with you. Living Wills can help if they open the conversation. They just can’t be taken literally.
Don–
What you describe is not unlike the scheme developed in the 1980s that encouraged AIDS patients to sell an interest in their life insurance policies to investors. The investors were betting that the patient would die sooner; the patient was hoping he would live longer.
Even on Wall Street (where I was at the time, at Barron’s) this was considered,by many, to be an appalling idea.
You just don’t mix blood and money. This is why we don’t sell children. And why we don’t “bet” on how soon someone will die.
Moreover, in the situation you describe,the poor will always feel more pressure to give up and take the death benefit.
When it comes to healthcare, everyone, rich or poor, black,Latino or Purple, should receive the same care– especially when it comes to critical end-of-life care.
Decisons about end-of-life care should be made based solely on medical evidence and what is in the patient’s best interest –with as much input from the patient as possible.
Ideally, palliative care specialists can lay out the risks and benefits of further care so that patients can make informed choices based on their own hopes and fears–but not based on their bank account.
This has been a wonderful discussion of many intersecting issues in care near the end of life. As someone who has been working for 20 years to change medical school and post-graduate palliative care education, I can affirm how big a battle this really is. Although we have made many small victories, large scale change has been illusive, as we have failed to obtain significant buy-in from the major national accreditation and oversight organizations LCME, AAMC and ACGME and their respective councils and committees. Despite the growing evidence, as so eloquently discussed in this blog, of the positive impact of palliative care on patients, families and the profession, traction for significant medical education reform has been glacially slow, and largely dependent on local champions, one school at a time.
I am in complete agreement with the sentiments about the failure of Living Wills–great idea, but with unintended consequences. In contrast, for some, but certainly not all cases, having a surrogate decision maker is of benefit, but limited by the inevitable unique circumstances of the individual case. There is no easy solution to this problem–care decisions near the end of life are messy, emotional, and overlaid with health system and societal forces that are frequently not aligned to optimal patient care. There will be no one-solution-fits-all approach to fixing this problem.
David–
Thanks for your comment
You write about “the inevitable unique circumstances of the individual case.”
That is what makes this so difficult.
And this is why we need pallaitive care teams–who are trained to deal with that uniqueness case by case.
Thanks Maggie–one of the hats I wear is a consultant to the Center to Advance Palliative Care, helping to develop tools and resources in support of Palliative Care team development. We anticipate that the national financial mess will open some opportunities for PC development, but also place many existing teams at risk and inhibit new team development, as many hospital administrators do not view palliative care as a revenue generator. We are hopeful that palliative care will get a “seat at the table” in any health reform discussions.
David-
It is, in my view, tragic that hospital CEOs have been slow to reocgnize the value of palliative care. If they cannot reocgnize the need for it from a ethical point of view, at least you would think that they could grasp it from an economic point of view
random thoughts: the “living will” per se is of little use in itself and is nearly always too non-specific to guide treatment. On the other hand, the medical proxy, guided by discussion with the patient ahead of time, can be quite helpful. As an RN with long experience in and around ICUs I had a big advantage over the average person in doing my own medical power of attorney. I got Nolo Press Willmaker program which has a section for DPA for healthcare – I highly recommend it – and took the time to add significant verbiage on my own beliefs and philosophy, getting into issues that the average patient would have no clue about – the use of opiates to treat shortness of breath even at the cost of shortening life, to give just one example. Then when all was said and done, had a pretty good discussion with both my primary proxy – my wife – and my secondary proxy – a nurse friend. At the end of the process, I feel like I have done as well as possible at making sure my wishes would be followed and I am also acutely aware that very few people in the world have the knowledge to do what I did.
David RN-
Thanks for the comment.
It seems that most of us agree that the living will is rarely going to fit specific circumstances but it’s a good starting point for “having the conversation” with a proxy (ies) and your doctor.
Very interesting article.I came to know many of the details about living wills trouble.
People should read this article.Living will is useful for telling their decision easily.