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At a panel sponsored by the California HealthCare Foundation at MOCA Grand Avenue, experts in healthcare and end-of-life issues let a crowd in on the secrets that doctors–perhaps unknowingly–are keeping from patients and their families.

Dr. Ken Murray, author of “How Doctors Die,” traced Americans’ lack of familiarity with death to the 1950s, when the death industry was commercialized and parlors, where dead people were laid out for wakes, were renamed living rooms. He added that, while medicine has made incredible advances in the past six decades, the way people experience healthcare in television and movies offers a false sense of the power of intervention.

San Jose Mercury News reporter Lisa Krieger, the evening’s moderator and the author of a series of articles about the cost of dying in America today, asked the panelists what two or three things the audience needed to take away from the evening’s conversation.

Judy Citko, the executive director of the Coalition for Compassionate Care of California, said that we should start advance care planning now. If you are 18 or older, you should have an advance directive that includes treatment preferences and values, she said. At the very least, you should name a surrogate to speak for you. This can be tricky–since the people you love may react to your illness differently from you–but the job of the surrogate “is to stand in your shoes,” no matter how emotionally difficult that may be.

What questions, asked Krieger, should a surrogate, or other friends and family members who are making decisions for someone who’s very sick, be asking doctors?

Murray said that the best scenario is to have the patient’s long-term primary care physician–someone he or she trusts–on hand. He also said that it’s less helpful than we think to ask a doctor, “What would you do, or what would you do if it’s your mother?” Physicians are wary of imposing their own value system onto the patient. Instead, asking clear-cut questions and demanding answers is critical.

“If the doctor’s not the right person,” said Citko, “it can be helpful to bring in a social worker or a chaplain who can look at the bigger picture.” That’s because more than medical tests are at stake. Values are, too.

Shirley Otis-Green, a senior research specialist at City of Hope and a social worker with experience in palliative care, recommended requesting a family meeting in which family members meet with the doctor and a team that might include a social worker, psychologist, chaplain, and nurse. It’s a chance to make sure everyone is on the same page and ask difficult questions about the future.

Getting the entire family on one page can be a struggle, which is why, Citko said, the conversation should start long before a crisis and the attendant stress begins. Television can be a good conversation starter–watching someone die in a fictional setting–and so can the death of another family member. Otis-Green said that even the death of a pet could provide an opening for discussion.

What you can’t do in advance for yourself, said Citko, is leave a laundry list of procedures you do and don’t want. Most people suffer from complicated conditions that preclude anticipating the particular decisions that have to be made. It’s more important, she said, to think about what makes life worth living. “It doesn’t matter what your choices are,” she said. But “you should put them in writing so they can be honored.”

Still, added Murray, certain interventions can reliably be ruled out. “For terminal people, CPR is nuts,” he said.

While an advance directive is hypothetical, once you are ill, you have options specifically to decline certain treatments. A POLST (Physician Orders for Life Sustaining Treatment) form, said Citko, is based on your current condition. And it can be changed at any time, added Murray.

Money also plays a role in end-of-life decisions for both patients and doctors. What came to be called “death panels” were originally just a law intended to reimburse doctors for time spent talking with patients about advance-care planning, just as they are reimbursed for certain procedures that prolong patients’ lives but might not be in the patients’ best interest.

Murray believes that money is “a huge driver in the aggregate,” but argued that most doctors are not driven by money in individual situations.

In the question and answer session, audience members asked the panel for facts, figures, and more detail.

Other than CPR, what other common end-of-life procedures have a low probability of success? Murray mentioned ventilators, dialysis, and feeding tubes, all of which buy “miniscule amounts of time in most cases.” When we employ these procedures, said Murray, “we’re not prolonging life, we’re prolonging death.”

Watch full video here.
See more photos here.
Read expert opinions on how we can take control of our final days here.
Read Ken Murray’s “How Doctors Die” here and “Doctors Really Do Die Differently” here.

*Photos by Aaron Salcido.

The post Going Gentler Into That Good Night appeared first on Zócalo Public Square.

If you’re reading this, you will die. Of course, you’ll also die if you’re not reading this. Death is inescapable. We have a hard time accepting that, and we often avert our eyes from end-of-life decisions. The result is that many of us die in precisely the ways we most fear–in pain, in a hospital, alone, after aggressive but futile medical intervention. Creating a living will can help you make your death more peaceful and less agonizing. But it’s not the only thing to do. In advance of the Zócalo event “How Doctors Die,” we asked several healthcare professionals the following question: What’s the most important thing, apart from making a living will, that you can do to take control of your final days?

Get yourself a family

The truth is, in our final days it’s unlikely we’ll be able to take control. So perhaps the question really is: What is the most important thing I can do to prepare for the end of my life? My answer is: Get yourself a family! Families make the best advocates and caregivers. Family members care for one another in ways that are mutually responsive, highly personal, and, when necessary, fierce.

If you are single, live alone, or are proudly independent, read on. Jeffersonian individualism works well in civil matters, but human beings are social animals. Our relationships are fundamental to our wellbeing–especially during times of need, including the waning months of our lives.

I’m not suggesting that you get married or adopt someone to plan for old age (not that it would hurt.) Bloodlines and marriage are not the only family bonds. At some depth of friendship, individuals are rightly considered family. Getting a family means developing a group of people who matter to you and for whom you matter.

Is caring for a vulnerable family member a burden? Yes, but it’s one that families are willing to shoulder. When someone belongs to your family, his or her wellbeing is intertwined with your own.

If you are lucky enough to already have a family, invest in it by mending or tending your relationship with each member. Remember, no one is perfect. Thankfully we love people anyway. Forgiveness, gratitude, and love sustain the healthiest of families.

You needn’t be dying to begin preparing for your final days. I suggest people ask themselves, “What would be left undone or unsaid if any of the people I love most were to die suddenly?” You might consider saying these four things:

Please forgive me.

I forgive you.

Thank you.

I love you.

That way, whenever the time comes, you’ll be better able to say goodbye.

That much we can control.

Dr. Ira Byock is director of palliative care at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire and author of The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life. He can be reached through www.TheBestCarePossible.org.

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Accept death

Paradoxically, the most important thing that we can do to take control of our final days is to realize that we won’t be in control. It goes without saying that in the end many of us will be in a weakened state both mentally and physically. We will be unable to make the most basic decisions about what happens. This is a difficult situation in a society that values control and denies death. It’s one reason why so much money is spent to keep people alive during the last six months of their lives. We must accept our mortality. Even the best and most expensive medical technology will not keep us alive indefinitely.

How do we get to this acceptance? One would expect a religious view to help, but often this isn’t the case. A study published in the Journal of the American Medical Association in 2009 found that religious patients were more likely to receive aggressive care during their last week of life. This is consistent with what I often see. A belief in miracles, even in the form of medical interventions, can work against a simple acceptance of death.

But I believe that acceptance will eventually be forced upon us. Even with reform, healthcare costs are unsustainable, and expensive end-of-life care is a major factor. When public and private insurance programs begin seriously to take on this issue, one response may be for people to face death rationally. Perhaps there will even be a growth in formal and informal discussion groups that find inspiration in things like the Serenity Prayer. In our final days we need the wisdom to accept what can and cannot be changed.

Rick Mathis is Director of Research and Analysis at the Ochs Center for Metropolitan Studies in Chattanooga, Tennessee. He is the author of several books and articles on healthcare and on spirituality and daily life.

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Talk in depth to family and friends

There are really two different questions here: what can be done in advance to take control of our final days, and what can be done in the moment? In advance of our own death, each of us should have conversations with our closest family members and friends outlining our feelings about treatment at the end of our lives. If we have done this, then our relatives, and friends, can help us have the kind of death we most prefer.

Intensive care units are able to keep patient’s bodies alive for days even when there is little hope of the person surviving, much less recovering. Is it your preference to have the hospital keep you alive, hoping against hope for a turnaround in health? If so, know what you are choosing: being unconscious in an intensive care unit with a tube down your airway so that a ventilator can breathe for you–and aggressive CPR if your heart does stop.

Individuals who prefer to limit the amount of medical intervention at the end of their lives will have more opportunities to talk with family members and friends throughout their decline and can die at home or in the more home-like setting of a hospice. Their pain will be controlled, their bodies cared for, and they will have much greater privacy and autonomy than the hospital typically affords.

Knowing when the time to choose has arrived can be difficult because doctors are often poor prognosticators. Press physicians for full and detailed information. Remember that how a person leaves this world should be that individual’s decision.

Theresa Brown, a clinical nurse, is an opinion columnist for the New York Times, and the author of Critical Care: A New Nurse Faces Death, Life, and Everything in Between.

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Create a living living will

Find yourself a living living will–a living will that is enhanced by someone with intimate knowledge of your personality and wishes. As a hospital-based internist, I know firsthand that living wills are very often a Sesame Street approach to something as complicated as a NASA shuttle launch. Do you really want Gonzo at the controls as the rockets fire? Living wills are a great cognitive exercise, a way to begin thinking about how one might want the end to go; but they cannot possibly address all the permutations that often arise in end-of-life situations.

Here’s some common living will phraseology that makes my point: “I would want all treatment unless there was no hope of meaningful recovery.” Fine, but what does “no hope” mean to you? One in a thousand chance? One in 10 thousand? One in a million? And trickier still, what constitutes a “meaningful recovery”? A life where one is perpetually nursing-home-bound? At home, but unable to walk? Able to walk but unable to speak fluently?

These are some of the tricky questions that only a living living will can answer. That’s why you need someone with the personal (loves you and knows you well) and legal (power-of-attorney) authority to speak to your wishes when you cannot. And if need be, this person should be able to forcefully advocate for you, because “Do Everything” is the American healthcare system’s current default setting, and that’s typically what you’ll get if you don’t demand otherwise. And then it’s not your life, really: it’s the system’s.

And if, because of advanced age or illness, the end seems near, consider filling out a POLST (Physician Orders for Life-Sustaining Treatment) with your physician. As a signed doctor’s order, this can be particularly valuable in emergency situations where your living living will is either not available or has yet to be notified.

Dr. Craig Bowron is a hospital-based internist (“hospitalist”) in Minneapolis. His writing has appeared in The Washington Post, Slate, and The Huffington Post.

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Decide what matters most

The most important steps you can take to be prepared for living with a serious illness is to begin thinking about what matters most to you. Think about that you would want done if you were hit by a truck tomorrow and were in a permanent vegetative state thereafter. For example, if you are the kind of person for whom life at all costs–even if you could no longer recognize and interact with your loved ones–is the highest priority, you should tell your doctor and your family that your goal is to live as long as humanly possible no matter what. If, on the other hand, you are like most of my patients, quality of life may matter most to you. In that case, articulate to yourself and to your family and to your doctor what makes life worth living for you. It may be the ability to recognize and have meaningful interaction with the people you love. It may mean the ability to be independent and active. It may mean not being a burden on your children. It may mean being able to read or write.

As long as you have your wits about you, you can and will make your own decisions about medical care over the course of an illness. It is when (and this eventually happens to nearly all of us) we lose that ability that other people will have to make those decisions on your behalf. If you don’t know what matters most to you, how can they know? Humans are not mind readers.

If you find all of this overwhelming, then seek help from a palliative care team in your area. You can find a team in your area by visiting www.getpalliativecare.org. Palliative care is specialized medical care for people with serious illnesses. It’s focused on providing patients with relief from pain and stress. Unlike hospice care, palliative care can be applied to anyone regardless of prognosis, even when full recovery is expected.

The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness–and it can be provided together with curative treatment.

Dr. Diane E. Meier is Director of the Center to Advance Palliative Care (CAPC).

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Take four essential steps

Most of us will die of progressive chronic illnesses. In our final days, most of us will experience suffering. Some of it may be physical: pain, tiredness, shortness of breath, and nausea. Some of it may be emotional: fear, despair, family conflict, and spiritual crisis. We have engraved in our DNA that dying is not a good idea. Fortunately, there has been great progress in reducing physical and emotional suffering.

In the past 28 years of working full time in helping patients and families, I have learned that there are four things we can do to take better control of our final days.

1. Access a good palliative care team. This team should be led by a palliative medicine specialist who works with a team of colleagues, including a counselor, rehabilitation professionals, a chaplain, and a palliative care trained nurse. The team should start seeing you while you’re still receiving treatment. Palliative care units are intensive care units for physical and emotional suffering and must be on hand.

2. Get help from family and friends. For the last two months of life you will probably have great difficulty doing laundry, housecleaning, shopping, or even going to the bathroom. If no one lives with you, then you must either move in with someone you love or have someone you love move in with you.

3. Set aside money. Ending your days well can be expensive. If you have the resources, consider hiring someone to help out with chores and transportation so that family can sometimes take a break. You might also want to move to another place to receive regular care.

4. Seek spiritual and religious care. If you belong to a religious denomination, then you may want to reconnect with your community of faith. If not, take advantage of programs that will help you find meaning your life and your legacy.

These four measures will not eliminate all your suffering, but they will for sure help you live better during your final days.

Dr. Eduardo D. Bruera developed and leads the Department of Palliative Care and Rehabilitation Medicine at The University of Texas M. D. Anderson Cancer Center.

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Inform yourself of the following basics

People have a basic right, protected by U.S. law, to be free of medical treatments they do not want. When a person is unable to make medical decisions, this right is protected through surrogate decision-making, authorized in all states.

Advance directives (sometimes known as “living wills”) allow people to document any explicit instructions they may have concerning future medical treatment.
Portable medical orders (including POLST-type documents authorized in many states, see www.polst.org) are another type of documentation, suitable when a person has been diagnosed with a serious condition and medical decisions are foreseeable.

Whether or not a person wishes to complete advance directive to document explicit preferences about medical treatment, appointing a surrogate (also known as a “proxy” or “agent”) and discussing his or her values, preferences, and goals with the surrogate is perhaps the most important step a person can take. A knowledgeable surrogate who is prepared to make medical decisions if a person is unable to do so is able to answer the question “What would this person want?” This is a key question when a person’s advance directives (if any) do not address the situation at hand. A knowledgeable surrogate can collaborate with physicians and other healthcare professionals to clarify the patient’s preferences and goals and to apply this information to different medical circumstances and changing conditions.

Advance care planning is a process that helps people to think about and describe their values and preferences about future medical treatment, in the context of their goals for their own lives (for example, spending time with loved ones, or seeing a child or grandchild graduate, or continuing to pursue meaningful work or interests), and to ensure that these values and preferences are known in future care. Medical professionals are increasingly aware of how to conduct an advance care planning process, including the documentation of advance directives and the identity of a patient’s surrogate. They can also help their patients to clarify their goals and preferences and develop a care plan reflecting the patient’s values. Advance care planning ideally involves the patient’s appointed or intended surrogate, as it is essential for a surrogate to be knowledgeable about the patient’s goals and preferences and to be ready to carry out the surrogate’s responsibilities if needed.

Nancy Berlinger, Bruce Jennings, and Susan M. Wolf are the authors of The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life: Revised and Expanded Second Edition (Oxford University Press, in press).

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Lay out your goals–and communicate them

First, step back and decide what your goals are and how you want to live. Second, communicate those goals to your loved ones, your physicians, and the hospital where you are most likely to receive care.

Ideally, you’ll begin taking these steps long before you approach the end of life, review them regularly, and make adjustments as your health and other circumstances change. A living will is not irrevocable.

What do I mean by goals? Let’s say you are 85 and still active. You are diagnosed with cancer. Do you want to take a shot at being cured? Or do you want to live out your remaining days as normally as possible, without aggressive medical treatment?

Surgery followed by chemotherapy may buy you some extra time. But you also risk dying from the surgery, becoming debilitated by the hospital stay, and being made very sick by the chemo. If you reject aggressive treatment, the cancer is likely to kill you. But with proper pain management you may live a relatively good life for your remaining days.

Communication is much more than filling out a form. Talk to your family about your vision of the end of life. These conversations are often very hard, and family members will frequently disagree–with you and with one another. But it is important that they understand that this is your choice, and it is their job to support you.

Do the same with your doctor. If you express your wishes to her face-to-face, she is more likely to respect them. This isn’t easy in today’s often-impersonal world of healthcare. But it is possible.

Finally, assign one person to be your healthcare advocate if you can no longer speak for yourself. End of life is no time for fraught family negotiations. Put someone you trust in charge, and make sure everybody knows whom you picked and why.

Howard Gleckman is author of Caring for Our Parents (St. Martin’s Press) and a resident fellow at The Urban Institute. He blogs at www.caringforourparents.com.

*Photo courtesy of mcsquishee.

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The response to this simple idea was overwhelming. I read thousands of comments people posted online regarding the end-of-life care of loved ones. They told of near-dead relatives being assaulted with toxic drugs and painful procedures for no good reason. I am haunted by one description of a patient who could neither talk nor move, begging with her eyes for it all to stop. Thankfully, such stories are slowly becoming less common, and, with an advance directive or POLST, you have considerably better chances of having a peaceful death, if that is what you want.

While the article rarely provoked hostility, it did, among some readers, prompt skepticism. I’d written the article in a personal, anecdotal style, so I rarely made use of numbers, studies, or charts. For example, Ezra Klein, writing in The Washington Post, wanted to see more evidence for my assertions. “Does anyone know of data on end-of-life spending for doctors?” he asked. “Or even on the percentage of medical professionals who have signed living wills?”

This essay is an attempt to address such questions. Perhaps it should be viewed as a set of endnotes to “How Doctors Die.” For every assertion of mine that was based on observation, I’ve looked for relevant scholarly evidence that might support or refute it. Here is what I found:

First, and most important, is the question of whether doctors, for the most part, die differently. One of the clearest indicators we have is a survey from Johns Hopkins University. It’s called the Johns Hopkins Precursors Study, and it’s based on the medical histories and decisions of students from the School of Medicine classes of 1948 through 1964 who volunteered to be part of the survey. According to the study, 65 percent of the doctors (or former medical students) had created an advance directive, i.e. a set of legal documents spelling out in advance what sort of end-of-life care they would like. Only about 20 percent of the public does this. When asked whether they would want cardiopulmonary resuscitation, or CPR, if they were in a chronic coma, about 90 percent of the Johns Hopkins doctors said no. Only about 25 percent of the public gives the same answer.

I also asserted in “How Doctors Die” that CPR is rarely as effective as people seem to think. What people have seen on television is at odds with happens in real life. A 1996 study published in The New England Journal of Medicine found that CPR as portrayed on television was successful in 75 percent of 60 cases and that 65 percent of the patients went home. In contrast, in a 2010 study of more than 95,000 cases of CPR in Japan, health professor Hideo Yasunaga and fellow researchers found that only 8 percent of patients survived for more than one month. Of these, only about 3 percent could lead a mostly normal life. A little more than 3 percent were in a vegetative state, and about 2 percent were alive but had a “poor” outcome.

My sense that there’s a yearning among ordinary patients to have more peaceful deaths has been echoed in the research of University of Wisconsin-Madison nursing professor Karen Kehl. In an article called “Moving Toward Peace: An Analysis of the Concept of a Good Death,” Kehl analyzed a collection of relevant articles and, based on their contents, ranked the attributes of an ideal death as follows: being in control, being comfortable, having a sense of closure, having one’s values affirmed, trusting in care providers, and recognizing impending death. Hospitals cannot help with most of these things. Unfortunately, most patients do not see their wishes fulfilled. A 1998 study published in the Journal of the American Geriatrics Society looked at Medicare patients and found that, while most said they preferred to die at home, most died in hospitals.

I discussed the tense, and often tragic, circumstances that surround many of the treatment decisions made in hospitals. Often, I noted, family members or medical staff effectively override the wishes of a dying patient. The studies I’ve found on this suggest that family plays a particularly big role in taking things in an unintended direction, especially when there’s nothing in writing. A 2003 study published in the Journal of Clinical Oncology found that most patients and families agree in theory that patients should make their own end-of-life decisions, but in practice about half of families override the stated preferences of patients. They have disagreements about the use of life-sustaining measures, and they lack written documents to resolve the matter. In contrast, a 2010 study in The New England Journal of Medicine found that people with advance directives usually receive the care they’ve chosen.

Every doctor has heard stories about people who have had miraculous recoveries, despite a doctor’s prediction. (Such stories are one reason doctors hate to make predictions.) But the sort of cases I’ve written about are those where all treatment has failed and the patient faces death soon. When applied to a patient in the last stages of a terminal decline, CPR is particularly ineffective. A 2010 study published in the journal Supportive Care In Cancer looked at terminal patients who wanted no CPR but got it anyway. Of the 69 patients studied, eight regained a pulse, but, 48 hours later, all were dead. Well-meaning CPR advocates talk in terms of “survival,” but all the term means is that the heart again beats on its own. In the above example, survival was 11 percent, but “survival” as often understood by the public–regaining a reasonable quality of life–was zero.

We don’t like to think about death. But that avoidance is one reason so many Americans fail to arrange an advance directive, even when they are severely ill. When patients of mine would come to my office accompanied by a family member, I often asked the patient how he or she wanted to die. I didn’t do it because the patient was on the brink of death, or even sick. I did it because I wanted the patient to think about the question and also to make sure that a loved one got to hear the answer. Unwanted futile measures, prolonged deaths, and hospital deaths remain commonplace in America and many other places. But they don’t have to be. It just requires our doctors and, no less, the rest of us to come to terms with the inevitable.

The post Doctors Really Do Die Differently appeared first on Zócalo Public Square.

About a month ago, the last time I had a visit from my home health care nurse, she suggested I fill out a document called the POLST, or Physician Orders for Life-Sustaining Treatment. She gave me the papers to take to my doctor for my next checkup. The document looked familiar. I’ve had surgery several times in the past five years, and I feel as though I’ve filled it out every time I’ve been to the hospital. But POLST is not a standard directive. It’s signed by your doctor, and it’s always in your records, no matter where you’re getting treatment.

I know what overtreatment looks like. My husband died of emphysema 25 years ago. He couldn’t breathe or eat anything on his own, and he was hooked up to the machines for several weeks. It was terrible for me and my family to see him like that, and eventually we got him off the machines.

About six months ago, I got surgery for rectal cancer. Afterwards, I was put on chemo for a few months, as a precaution. Soon the doctors took me off because they said chemo isn’t good for patients over 80 years old. I’m 88. I don’t want to be put on feeding tubes or respirators or anything else to prolong life.

Of course, if you have a really bad bout of pneumonia when you’re my age, sometimes life support machines can get used for a day or two and help pull you through. My doctor told me this as he helped me to fill out the POLST. People as old as I am can sometimes recover–maybe not completely, but at least enough to get around again and see their family. But for me it’s not worth suffering greatly for a small possibility of living a little longer. My POLST form now reflects these personal preferences.

I wouldn’t even have done the chemotherapy at all if I had known better–if I had spoken with my own doctor more when I got the cancer. I later learned he thought it was too drastic for me. But when I was diagnosed I didn’t know anybody else to talk to, so I wound up following the course laid out by the oncologist and the surgeon. It wasn’t that people didn’t give me information, but I was just in such a state after the surgery that I couldn’t absorb it all.

Now, things are clearer to me. The chemo would slightly reduce the risk of cancer returning, but considering how sick it was starting to make me feel it just wasn’t worth it for a person my age. I’m just happy that the surgeons removed everything during surgery and that I’m cancer-free right now. They said I probably have a few good years left in me. That’s not so bad for an 88-year-old woman.

I’m not so afraid of death, but like most people I’d prefer to die in my sleep. What I fear most is having a lot of pain or being put through suffering for only a small chance of recovery. My hope is that having filled out a POLST that reflects my wishes on how to be treated will let me live out the rest of my life as I want–and, one day, die as I want, too.

As told to Antal Neville.

*Photo courtesy of Guillaume Brialon.

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It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.

Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen–that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).

Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.

To administer medical care that makes people suffer is anguishing. Physicians are trained to gather information without revealing any of their own feelings, but in private, among fellow doctors, they’ll vent. “How can anyone do that to their family members?” they’ll ask. I suspect it’s one reason physicians have higher rates of alcohol abuse and depression than professionals in most other fields. I know it’s one reason I stopped participating in hospital care for the last 10 years of my practice.

How has it come to this–that doctors administer so much care that they wouldn’t want for themselves? The simple, or not-so-simple, answer is this: patients, doctors, and the system.

To see how patients play a role, imagine a scenario in which someone has lost consciousness and been admitted to an emergency room. As is so often the case, no one has made a plan for this situation, and shocked and scared family members find themselves caught up in a maze of choices. They’re overwhelmed. When doctors ask if they want “everything” done, they answer yes. Then the nightmare begins. Sometimes, a family really means “do everything,” but often they just mean “do everything that’s reasonable.” The problem is that they may not know what’s reasonable, nor, in their confusion and sorrow, will they ask about it or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether it is reasonable or not.

The above scenario is a common one. Feeding into the problem are unrealistic expectations of what doctors can accomplish. Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor. I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles (for those who want specifics, he had a “tension pneumothorax”), walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions.

But of course it’s not just patients making these things happen. Doctors play an enabling role, too. The trouble is that even doctors who hate to administer futile care must find a way to address the wishes of patients and families. Imagine, once again, the emergency room with those grieving, possibly hysterical, family members. They do not know the doctor. Establishing trust and confidence under such circumstances is a very delicate thing. People are prepared to think the doctor is acting out of base motives, trying to save time, or money, or effort, especially if the doctor is advising against further treatment.

Some doctors are stronger communicators than others, and some doctors are more adamant, but the pressures they all face are similar. When I faced circumstances involving end-of-life choices, I adopted the approach of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly. If patients or families still insisted on treatments I considered pointless or harmful, I would offer to transfer their care to another doctor or hospital.

Should I have been more forceful at times? I know that some of those transfers still haunt me. One of the patients of whom I was most fond was an attorney from a famous political family. She had severe diabetes and terrible circulation, and, at one point, she developed a painful sore on her foot. Knowing the hazards of hospitals, I did everything I could to keep her from resorting to surgery. Still, she sought out outside experts with whom I had no relationship. Not knowing as much about her as I did, they decided to perform bypass surgery on her chronically clogged blood vessels in both legs. This didn’t restore her circulation, and the surgical wounds wouldn’t heal. Her feet became gangrenous, and she endured bilateral leg amputations. Two weeks later, in the famous medical center in which all this had occurred, she died.

It’s easy to find fault with both doctors and patients in such stories, but in many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.

Even when the right preparations have been made, the system can still swallow people up. One of my patients was a man named Jack, a 78-year-old who had been ill for years and undergone about 15 major surgical procedures. He explained to me that he never, under any circumstances, wanted to be placed on life support machines again. One Saturday, however, Jack suffered a massive stroke and got admitted to the emergency room unconscious, without his wife. Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.

Even with all his wishes documented, Jack hadn’t died as he’d hoped. The system had intervened. One of the nurses, I later found out, even reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly, and he’d left the paperwork to prove it. But the prospect of a police investigation is terrifying for any physician. I could far more easily have left Jack on life support against his stated wishes, prolonging his life, and his suffering, a few more weeks. I would even have made a little more money, and Medicare would have ended up with an additional $500,000 bill. It’s no wonder many doctors err on the side of overtreatment.

But doctors still don’t over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures. I was struck to hear on the radio recently that the famous reporter Tom Wicker had “died peacefully at home, surrounded by his family.” Such stories are, thankfully, increasingly common.

Several years ago, my older cousin Torch (born at home by the light of a flashlight–or torch) had a seizure that turned out to be the result of lung cancer that had gone to his brain. I arranged for him to see various specialists, and we learned that with aggressive treatment of his condition, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me.

We spent the next eight months doing a bunch of things that he enjoyed, having fun together like we hadn’t had in decades. We went to Disneyland, his first time. We’d hang out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital foods. He had no serious pain, and he remained high-spirited. One day, he didn’t wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.

Torch was no doctor, but he knew he wanted a life of quality, not just quantity. Don’t most of us? If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors.

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