Wednesday, December 29, 2010


In a Medicare policy taking effect January 1, the federal government will cover “voluntary advance care planning,” and pay doctors for end-of-life conversations with patients. This is smart, far-sighted and compassionate policy, and though it essentially is but one item in a schedule of payment rates for thousands of medical services, I’d like to think it will encourage better and earlier doctor-patient communication.

In this voluntary planning, patients can hear from the doctor about preparing an advance directive, which anticipates a time when the patient cannot make informed decisions and provides the care team with a clear sense of the patient’s wishes. The benefits should be obvious.

And yet news of the new policy has been simmering in the blogosphere and cable news over the holidays, and could heat up after New Year’s. It might be useful to remember, as an editorial in the Minnesota Star Tribune put it well: “Advocating end-of-life care planning does not equal end-of-life advocacy. That critical distinction is deliberately buried by irresponsible health care reform opponents in the long, ludicrous debate over nonexistent death panels.'’ (

Even for the best care-givers, conversations about the dying process are difficult, and yet they are crucially important to a patient in making smart and informed decisions. Often these topics are put off till close to the end, when there’s no longer any avoiding them, and when the patient has diminished comprehension. Care is best when the doctor clearly understands the patient’s wishes, and the patient understands what is possible and what is not.

Dr. Maria J. Silveira of the University of Michigan found in a study that many patients had “treatable, life-threatening conditions” but lacked decision-making capacity in their final days. The new Medicare coverage adds incentive for doctors to learn a patient’s wishes before a crisis occurs. Dr. Silveira told the NY Times she might ask a person with heart disease, “If you have another heart attack and your heart stops beating, would you want us to try to restart it?” A patient dying of emphysema might be asked, “Do you want to go on a breathing machine for the rest of your life?” And a patient with incurable cancer might be asked, “When the time comes, do you want us to use technology to try and delay your death?” (

Oregon has engaged end-of-life issues as few states have, and Oregonians “understand that end of life planning is about keeping control of choices about life-sustaining treatment where it belongs -- with the individual, not with the government, physicians or hospitals.” (

With the new policy, patients gain knowledge and autonomy. Doctors get a nudge and an incentive to begin this conversation while the patient can still participate in it, and perhaps also improve their own communication skills.

Sunday, December 5, 2010


A population that is living longer and dying slower is imposing a burden on care givers and exposing a weakness in the entryway to hospital care. Emergency Departments are poorly prepared and apparently even reluctant to care for those at the end of life whose presentation is unspectacular. These poor souls have inspired a new word: subtacular.

Subtacular was coined by the authors of “Trajectories of End-of-Life Care in the Emergency Department,” a British study published in the December Annals of Emergency Medicine. The word refers to an aging population who arrive at the ED needing care that is palliative, not resuscitative -- that is, needing care the ED is ill prepared to deliver. Spectacular gets life-saving attention; subtacular is hidden in a corner and paid little mind.

“Trajectories” paints a picture of neglect for the untreatably dying, with regard for the patient disappearing once stabilized. After discussions to discontinue treatment, and a Do Not Resuscitate order written, patients and family were essentially ignored, and found a quiet place out of the way of the ED’s “real” work. Sometimes the family’s first realization that no therapeutic options remain comes via ED staff they’ve just met. And emotional support was not a hallmark of the ED studied.

The study was of a single urban teaching hospital, and did not presume to generalize its results. More generally, Annals of Emergency Medicine also reported that in the past several years, palliative care increasingly has been taught to emergency personnel at hospitals in several American cities. This is certainly a positive sign of necessary change.

I’m struck by “Trajectories” in a number of ways. One is language. The study says most ED patients are considered spectacular, or "candidates for intensive life-preserving treatment." By contrast, the subtacular often suffer from chronic illnesses. ED care is trained to run to the next pressing medical need; emotional support at end of life loses out to a life that might be saved.

So here is a category of patient lacking even an adequate term to describe -- which perhaps also speaks to the neglect. But while subtacular might fill a need in a medical study, it’s coldly clinical medical-speak of little use outside the profession.

Given the aging public’s fairly widespread wish to die at home, the ED seems the last place to send a person who is imminently dying with nothing left to treat but pain. While “Trajectories” points out a need for palliative training in the ED, it also highlights a “dumping ground” reality of the ED as a place we send those we don’t otherwise know what to do with. We should know.

ED isn’t the only place palliative training is needed. Signposts in the dying process aren’t always clear, even for specialists, and yet the care facility shouldn’t routinely resort to an ambulance to the ED. With a patient at the point where all that’s available is comfort care, in a population that’s living longer and dying slower, why aren’t palliative specialists more common?

Wednesday, November 24, 2010


About a year ago, the Community Ethics Committee wrapped up a report on usage of social media by medical professionals. The way and speed at which social media is evolving, it’s a subject bound to make its way back into the CEC dialogue in some form.

Bryan Vartabedian, a pediatric gastroenterologist at Texas Children's Hospital/Baylor College of Medicine, blogs regularly about the convergence/collision of medicine and social media. Recently, a patient’s mother had a creative way to get his attention: She tweeted him. How he handled it is worth a read.

Tuesday, November 23, 2010


“The coming thing for patients near the end of life in Massachusetts is a new official form that lets them discuss and document their choices for life-sustaining treatments — based on their own needs, their own preferences and what is medically appropriate. I think of it as the final menu.” (Carey Goldberg for Commonhealth. For more, see

Monday, November 22, 2010


If elderly patients with incurable cancer would rather die at home, why do so many die in hospitals? Perhaps some of the answer is found in this odd truth that Atul Gawande has written about: Patients can understand a terminal diagnosis without accepting that they’re dying. The stated wish to die at home may be in conflict with, and even negated by, the desire to live as long as possible.

But where a patient lives in proximity to a medical center also impacts the likelihood that hospice care will be part of the end-of-life conversation, according to a report from the Dartmouth Atlas Project. The project’s first report on cancer care at the end of life studies quality of such care among medicare beneficiaries. The findings include:

+ “Even among the nation’s leading medical centers, there is no consistent pattern of care or evidence that treatment patterns follow patient preferences.”

+ “Many hospitals and physicians aggressively treat patients with curative attempts they may not want, at the expense of improving the quality of their last weeks and months.”

+ Clarity in communication is crucial. Patients want “honest conversations with their providers, ... balanced information about the chances of disease remission or progres-

sion, and the possible benefits and discomforts of different treatment options. Most

importantly, they want to be active partners with clinicians in making the decisions

about the type and place of care.”

+ “The use of hospice care varied markedly across regions and hospitals. In at

least 50 academic medical centers, less than half of patients with poor progno-

sis cancer received hospice services.”

+ “In some hospitals, referral to hospice care occurred so close to the day of death that it was unlikely to have provided much assistance and comfort to patients.”

To see the full report:

Wednesday, November 17, 2010


In a conference room at Harvard Medical School, a gathering of doctors, lawyers, bioethicists, clergy, students and others considered how the care for a dying elderly man and his hospital-shopping wife might better have been handled. The conversation cried out for a soothing touch, and fittingly, it was a nurse who came through. The wife, in delusional denial and desperately clinging, had been singing to her comatose husband. A nurse asked what song the woman had been singing.

The laughter came as welcome relief in a room full of more caring hearts and minds than answers. But the nurse’s comment has stayed with me, and become less funny over time. It might have been the smartest question asked that day. But it was never answered, and the conversation moved on to a lawyer’s insights. So it is with the nurse’s voice.

I thought of this nurse as I watched the Frontline documentary “Facing Death,” which follows several end-of-life cases at Mount Sinai Medical Center in New York. The footage and interviews with doctors, patients and family are compelling, and unquestionably helpful in improving understanding of a quandary unique to our time -- accepting death when technology says you don’t have to. (“Facing Death” airs November 23 on PBS stations, but can be viewed online now at

Missing from the documentary is what should never be missing from this dialogue -- the nurse’s viewpoint. Nurses are the Waldo of “Facing Death.” Where are they? The documentary is full of poignant scenes of doctor-patient and doctor-family dialogue, always difficult and sometimes brutally honest, and shines a brilliant light on a problem that, if society doesn’t sort out, money will forceably and inequitably decide. This is the subject underlying the country’s “death panel” insanity, and kudos to Frontline for looking at it rationally and insightfully. Kudos, too, to the doctors and families who’ve put themselves on display in situations that couldn’t be more difficult. Allowing cameras at such a time took extraordinary courage, but is of such great value.

What “Facing Death” does well, it does exceedingly well. It makes the point that end-of-life medical practice today was science fiction twenty years ago, when letting go wasn’t really a choice, and that billions of dollars are spent on end-of-life care, which is not sustainable. While technology can prolong life, there are no promises about that life being improved. One doctor says nearly 95 percent of Mount Sinai’s medical ICU patients can’t communicate, a fate Atul Gawande has termed “warehoused oblivion.” Each case is uniquely challenging, and yet shares the harsh fact of a life ending. Only the number of days left is in question.

“Facing Death” is invaluable for any med student, for its view into when “doing no harm” gets particularly tricky. And yet, for all the poignant conversation and close-ups on care, nurses are mostly blurred motion and background noise. The one nurse quoted is the daughter of a dying woman at odds with her sister, who happens to be a doctor. The nurse/sister advocates for acceptance and compassionate care; the doctor/sister wants to do what’s required to maintain the parent’s pulse.

All is revealed through narrator, doctor or patient/family. No clergy is involved. No therapist. And no nurse.

In the Harvard case study, the wife demanded that something be done to keep her husband alive, and the doctors saw an irreversibly dying man. In the center of this quandary were the nurse and the patient, the latter unconscious and seemingly unaware, except when he was cleaned. This was necessary to avoid infection, and required removing dressing from raw, deteriorating flesh. His agony transcended his unconscious state. A nurse did the cleaning. Nurses have a high enough burnout rate without being asked to torture a dying man.

“Facing Death” adds to an important and timely conversation, but nurses should have been heard from. Because in care at the end of life, whether therapeutic or palliative, nurses are as front line as it gets.

Monday, November 8, 2010


Awhile back, the Community Ethics Committee wrapped up a report on usage of social media by medical professionals. The way and speed at which social media is evolving, the subject is sure to make its way back into the CEC dialogue in some form.

Bryan Vartabedian, a pediatric gastroenterologist at Texas Children's Hospital/Baylor College of Medicine, blogs regularly about the convergence/collision of medicine and social media. Recently, a patient’s mother had a creative way to get his attention: She tweeted him. How he handled it is worth a read.

Sunday, November 7, 2010


At a bioethics consortium November 5 at Harvard Medical School, I was a fly on the wall for a presentation and dialogue about the case of an elderly person near death and desperately hospital-shopped by a family member who couldn’t let go. Because of the necessarily private nature of the consortium, I won’t go into detail. But as is typical for me in hearing such stories from the perspectives of doctors, nurses, ethicists, lawyers and clergy, I left certain of less than when I arrived. I entered Countway Library thinking it would at least be clear who was the patient; I was wrong.

Care of the dying person was inextricably linked to care for a family member, whose emotional distress rendered rational, compassionate decisions, and consensus, impossible. For nurses, merely to clean the deteriorating skin was to physically torture the patient; to consider withholding treatment and allowing natural and humane dying was emotional torture for the spouse. So who was the patient?

It could be argued the spouse’s actions made grief harsher than if natural death had not been prolonged. The only unambiguous thought I came away with is that it is never ethical for a hospital to knowingly to give bad care to a patient. Maybe that should go without saying, but that wisp of clarity might be central to any legislation regarding medical futility: It is never OK for a doctor or hospital to give bad care. Professional integrity can’t survive that compromise.

Friday, November 5, 2010


If ever a cause cried out for legislative wisdom and courage, it is medical futility. Consider the story of Ruben Betancourt, still playing out in New Jersey courts a year and a half after his death.

Ruben Betancourt died on May 29, 2009, at age 73, following complications from cancer surgery. In short, doctors at Trinitas Regional Medical Center in Elizabeth, N.J., deemed him in a persistent vegetative state, with a severe brain damage, kidneys beyond function, skin in irreversible deterioration. Betancourt's family disagreed and asked that treatment continue (tube-feed, dialysis, and a ventilator). Trinitas unilaterally imposed a do-not-resuscitate order, which put the family and hospital in court. And then Betancourt died.

At the heart of the Betancourt case is this: Is it ever OK for doctors to decide that dying is in process, medical care is futile, and to stop treatment against the stated wishes of the patient's family or guardian? And if the doctor can’t decide when treatment is pointless, who can? The questions will be ask more frequently as gap grows between society’s begrudging acceptance of death’s inevitability and medical science’s gift for prolonging life. And a further complication is cost: the hospital’s estimated tab for Betancourt’s care was $1.6 million.

Trinitas said it consulted with Betancourt's family and made efforts to transfer him elsewhere but could not find another facility willing to continue caring for him. "Patients do have a right to choose among available and appropriate treatment, but not to decide what's medically appropriate," Trinitas' vice president and general counsel Sam Germana told American Medical News.

Replied Betancourt attorney Todd Drayton: “We're not saying patients have the right to demand extraordinary or experimental treatment a hospital feels is inappropriate. That's not the issue. The facts of our case are whether or not a hospital can unilaterally terminate life-sustaining support over the objections of the family."

Last week, the New Jersey Appellate Division avoided “whole-cloth legislation from the bench,” but recognized the question won’t go away and requires “thoughtful consideration by the legislature.” The court’s apparent dodge may prove wise.

“Although at first glance it may appear that the Appellate Division side-stepped on an important issue with possibly nationwide consequences, the suggestion that the issue is best left for proper legislation may be the best course of action,” wrote Thaddeus Pope, bioethicist, blogger and law professor at Widener University. “The hospital sought an open-ended exception to the right-to-die doctrine for whenever a health care provider deems treatment to be unnecessary. While an exception that would allow some ability for a health care provider to refuse to continue treatment that is deemed unethical may be appropriate in certain circumstances, accepting such an argument might have led to an overbroad exception. The legislature may in general be better to craft a medical futility statute that would set the requirements for when a health care provider can refuse to continue providing treatment that would be considered futile.” (

Before I began to participate in the work of the Community Ethics Committee in late 2008, I was essentially oblivious to this end-of-life conflict, when doctors who’ve been counted on to “do something” confront the likelihood that there is nothing therapeutic to be done to reverse the dying process. The term for this is the coldly descriptive “medical futility,” as the CEC learned through a study regarding the ethics of withholding non-therapeutic CPR.

Quoting from the CEC’s report: “We struggled to define what medical treatments patients and families are entitled to expect, and we gravitated toward an approach which took into account the patient’s overall goals of care which should be agreed upon after discussions with an informed patient and family. The goals of care then establish the entire context of a patient’s encounter with the medical community, so that a decision about CPR can be made within that context. We were faced with the fact that sometimes patients are dying -- a sacred process which should be protected.”

In trying to locate clarity amid death’s shape-shifting reality, the CEC perceived a need for sensitive, non-clinical language, and not putting off discussion of death until the patient is imminently terminal. Goals of care, which seem to have been lost in the Betancourt story, are crucial if this conflict is to ever achieve resolution.

The circumstances of Ruben Betancourt’s death are unique to him, but the inherent dilemma is agonizingly common for doctors and nurses alike. In such cases, hospitals can seem cold-hearted or must back down and provide care they don’t believe in, which carries untold consequences for the next patient. The public and the medical professional would be well served by legislation of clarity and vision.

Monday, November 1, 2010


Is it better to do something than nothing? Always?

The Boston Globe has published an exceptional piece on contemporary thinking about CPR by correspondent Karen Weintraub (see

In explaining giving new priority to chest compressions as the most effective method for non-medical personnel, the story clearly puts the practice of cardiopulmonary resuscitation into perspective. Weintraub underlines the important fact that while CPR can be a life-saving measure for individuals in cardiac arrest, it fails to revive the person more often than TV dramas would have you believe. The story also notes that the untrained bystander often must overcome squeamishness to perform CPR on a stranger, and that there’s less to overcome with chest compressions than with mouth-to-mouth.

And yet the story also perpetuates an assumption about the benefits of CPR that can have profound ramifications in the emergency room. A cardiac expert says of the American Heart Association’s new policy that “we hope that more people will at least do CPR, which will at least keep some blood flowing. It’s better to do something than nothing.”

Is it true that it’s better to do something than nothing? For the bystander suddenly confronted with a collapsed individual, it probably is true. But something significant is lost in the public’s understanding of CPR when its practice moves from the innocent bystander to the emergency room, where bones get broken, bodies get shocked, and medical personnel can be left to feel they’ve inflicted pointless violence on a dying individual -- for the benefit not of the patient, but of the family. Doctors and nurses can see irreversible dying in progress, rendering CPR of no therapeutic value. And yet, they are asked to “do something,” and though doing otherwise can seem heartless, acting against their own judgment about what’s best for the patient can have psychic consequences for medical personnel that carry over to the next patient.

Even if only one life in ten might be saved, it’s easy to support public education in the basics of CPR. But maybe, sometimes, doing something means withholding non-therapeutic CPR.

Thursday, October 28, 2010


Is it ever acceptable for doctors and nurses to actively take part in a patient’s death? Many would say no, and perhaps cite the unambiguous commandment, “Thou shalt not kill.”

Not long ago, I read in the Boston Globe about parents who found themselves in the excruciating position of considering speeding the death of a child with terminal cancer and in merciless pain. And I was reminded of a child I met a few years ago. I’ll call her Ari, though that was not her name.

Ari was about four when I knew her. She didn’t say much. Mostly she turned her bald head away from me and tugged on her mom’s arm, the signal from a child in chaos that Mom had spent enough time with me.

Ari and her mother were camped on the hematology/oncology ward at Children’s Hospital in Boston when my wife and I were there with our daughter. They were back again some seven months later when I read on their Carepage blog about the choice Ari’s parents and doctors had made. Treatments had failed. Ari was terminal, in sedation-masked agony, and on a respirator. Her parents’ excruciating choice was to remove the respirator. They said goodbye. She died quickly.

Ari’s parents didn’t kill their daughter, and neither did the doctors. Cancer did that. The cancer untreatable, the doctors helped the parents and Ari accept the harsh truth of death, and compassionately treated her agony.

I’ve not been in that position myself, and find the decision-making process nearly impossible to imagine. But I’ve spent an unusual amount of time lately trying to imagine it. I’ve been thinking about it more than I ever expected or wanted to, as a member of the Community Ethics Committee, or CEC, of Boston. The CEC exists in the space between “Don’t just stand there, do something!” and “Don’t just do something, stand there.” Original members have been meeting monthly for three years, considering questions brought by doctors and nurses within the Harvard teaching hospitals. The idea was to go into the community in search of societal thought on issues of ethical intractability.

I missed the first study, when the committee struggled with the ethics of pediatric organ donation on cardiac death. I joined in year two, when the CEC was already in the first-draft stage of a report on CPR. I entered the conversation with an opinion I thought was a no-brainer: That CPR is automatic, and should be, when the heart stops. Turns out, the CEC isn’t a safe haven for no-brainers. What if dying is in process? Should a dying person’s last moments feature electric shock, broken bones and pointless violence, if it isn’t the patient’s condition that demands CPR, but family not yet ready for death to take place? Should a doctor be required to perform a brutal procedure for the family’s sake knowing it to be harmful to the patient?

Now the CEC is considering the ethics of palliative sedation, trying to shine a light on the line between assisted suicide and aggressively treating severe and intractable pain in a terminal patient when expedited death is a likely result. Cures common today didn’t exist not long ago; my daughter is the beneficiary of one of them. But each therapeutic advance brings new questions about the ethics of medical intervention in the process of life and death.

Ari had some of the same doctors and nurses as my daughter, but for us, the hard choices were about complications and possibilities, and never about imminent death. Ari’s disease was terminal, my daughter’s life-threatening. Hope resides in the distinction.

The work of the CEC is humbling. We’re parents and children, clergy and lawyers, educators and administrators, from an impressive ethnic, cultural and socio-economic cross-section of Boston.

The New York Times columnist Roger Cohen once wrote of his grand-jury service: “I was struck by how rare it is now in American life to be gathered, physically, with an array of other folk of different ages, backgrounds, skin colors, beliefs, faiths, tastes, education levels and political convictions and be obliged to work out your differences in order to get the job done.” He’d like the CEC. We’re essentially a group of people looking for clarity in a fog that doesn’t lift.

Tuesday, October 19, 2010


In newly revised guidelines for administering cardiopulmonary resuscitation, the American Heart Association endeavors to simplify the steps in CPR. The AHA advises that hard and fast chest presses should come first, before mouth-to-mouth. What used to be ABC (airway, breathing, compressions) has become CAB.

The new guidelines advise that the rescuer push deeper into the chest -- at least two inches in adults. I suspect that’s a more significant push than many would be comfortable administering, and I can imagine a rescuer, whether trained or untrained, sensing having crossed a line between therapy and violence. Two-inch pushes at 100 per minute are going to leave bruising.

For me, this begins to address the seriousness of CPR as a medical procedure, and the distinction among types of CPR, which had seemed such a reasonable, heroic and nonviolent attempt to get anyone whose heart had stopped back to normal. Clearly I watched too much TV.

Two years ago, when I joined, the Community Ethics Committee was near completion of its report on non-therapeutic CPR -- that is, CPR performed in a hospital, by trained staff, on a patient who will derive no benefit from it, and is in fact very likely dying. The medical staff know this, and advise against CPR, but the patient’s family wants “something” done.

There is a reality to cardiac arrest -- it’s involved in 100 percent of deaths. And though CPR can be a lifesaver, it is not routinely effective. Meanwhile, the medical community is increasingly concerned about providing the intrusive and violent procedure at the point when patients are in the process of dying -- when CPR may only serve to prolong suffering, delay the inevitable, and destroy the possibility of a death with dignity.

That is definitely NOT the CPR mythologized so dramatically and heroically on TV hospital dramas.

Wednesday, October 6, 2010


The administrator at my church is diligent in devising and following through on new strategies for getting the message out about worship, events and other church-related matters. And yet invariably she’ll hear from a member upset about missing something important that was well publicized via email, newsletter and posters, who asks, “Why didn’t you let me know?” The saying that comes to mind: You can lead a horse to water, but you can’t make it drink.

For doctors and patients, the stakes are higher. But while doctors generally need to improve their communication skills with patients, especially when the subject is goals of care at end of life, even physicians gifted at communication have difficulty being heard. In a recent blog entry (Accepting Mortality), I loosely referenced studies showing what doctors are up against in getting patients to clearly understand their plight. It seems many patients come with built-in spin control that filters out bad news and clears shelf space only for the positive. I learned of this from a Boston Globe story by Elizabeth Cooney, dated September 20, 2010, quoting from separate studies by Baystate Medical Center and Massachusetts General Hospital.

In the Baystate study, heart patients believed stents would prevent heart attacks and death even though their cardiologists were clear in explaining that the best the stents could do was relieve chest pain by opening clogged arteries. The MGH study concluded that, in the Globe reporter’s words, “people considering serious decisions about knee replacements, prostate cancer tests, and long-term use of medications such as cholesterol-lowering statins did not hold a balanced picture of the consequences of their choices.” This study was based on a national survey.

Dr. Michael Barry, of the Foundation for Informed Medical Decision Making and senior author of the MGH study, said a patient who focuses on the positive “probably fits the American psyche about preferring action to inaction. ... Patients often have an exaggerated view of the benefits.’’

Informed consent is problematic, Cooney writes, because patients must make crucial judgments at the very time they’re overwhelmed by fear, pain, or confusion. This was certainly true for me, when my daughter was diagnosed in 2005 with severe aplastic anemia, and life-and-death decisions had to be made with no time to waste. She was cured by bone marrow transplant, and is healthy today. But five years later, there remain major inconsistencies and striking differences in the way my wife and I remember conversations with doctors and nurses. Left to me and my shock-diminished comprehension, consent would have been guesswork, and my daughter might not have enjoyed such a positive outcome. But with the support of my wife and other family, and through repeated and difficult conversations with doctors and nurses as well as our own research, our decisions ultimately were very well informed.

Cooney also writes that “doctors may not be the best communicators.” During my daughter’s illness, I experienced doctors of such understanding, patience and compassion who were enormously helpful, explaining things as often as my thick brain required. I also experienced one particular doctor whose medical intellect and comprehension of my daughter’s situation was extraordinary and invaluable, but whose edgy personal style scared the hell of out both my wife and I. Then again, maybe that doctor’s style was just right, in that I never left our conversations hearing only the positive. The negative was made very, very clear.

“After seeing a specialist,” Cooney writes, “patients may turn to a primary care doctor, if they are lucky enough to have one who knows them well. Some specialists favor decision aids that explain a treatment in standard terms, including risks and benefits. These could be videos on a DVD that the patients could watch at home and then, when they return for another visit, ask questions about what it means for them individually.”

She quotes Dave deBronkart, who blogs as ePatient Dave, and who has thought much about communication and other interactions between doctors and patients ( and His own insights stem from being diagnosed with stage 4 kidney cancer in January 2007. “My advice is, first of all, it’s increasingly wise for patients and families to take an active role in learning what they can about treatment options, and realize we’re all prone to wishful thinking,’’ deBronkart said. “It’s smart to have somebody else check your work.’’

Every patient needs an advocate of some sort. Going head to head with a medical specialist of high intellect can be daunting, and not all have the self-confidence or requisite skills to truly speak up in such a situation and force the issue until real understanding is achieved. And the patient ultimately controls both the pace and most effective means of real understanding, which can require being demanding and difficult. It’s also a comfort to think the doctor knows just what’s right, and will make all the important choices. If I didn’t have my wife and others looking out for my daughter’s best interests, I’d have been desperate for a clear-headed someone who had my daughter’s back. “Partner with your physician,” deBronkart says. “Ask lots of questions. Call back, and ask more.’’ Great advice.

Dr. Angelo Volandes of MGH is a strong proponent of visual aids in decisionmaking. “I think physicians are still in the mindset of the way physicians have been talking to patients since Hippocrates, using words and concepts that most patients have no clue about,’’ he told the Globe. “Our argument is that pictures do a better job at communicating information to patients.’’ According to Volandes, patients who only hear doctors describe options are significantly less likely to choose palliative care -- that is, comfort care at the end of life -- than patients educated by watching videos. Patients better understood choices they could see.

That certainly fits with what I’ve seen in the classroom at my daughter’s school, which is increasingly adept at appreciating and understanding the range of learning styles among different children. That same range of learning styles is true among patients, and so the more ways of communicating, and the more repetitions, the more likely understanding will be achieved. And the earlier that dialogue begins in the treatment process, the better.

-- Though Paul C. McLean is a member of the Community Ethics Committee, this blog entry does not necessarily express the views of the CEC or other members.

Monday, October 4, 2010

Racial Disparities in End-of-Life Care Need Further Investigation


Boston Globe
October 4, 2010

Black patients with advanced cancer are less likely than white patients to have their wishes for end-of-life care honored, a new study in the Archives of Internal Medicine re¬ports, even though black and white patients were just as likely, to have discussed their preferences with their doctors.

Dr. Jennifer Mack of Dana-Farber Cancer Institute led a team that looked for a link between end-of-life discussions and what actually happened in the final week of cancer patients' lives. Previous research has shown that black patients are more likely than white patients to say they want treatments that extend life. White patients are more likely to choose palliative care, including hospice, which focuses on easing pain and discomfort rather than extending life.

Research has also found that black patients' preferences aren't necessarily followed. Mack and her colleagues wanted to know if the conversations patients had with their doctors might explain the disparity. They interviewed 71 black patients and 261 white patients whose cancer had spread and for whom chemo¬therapy had failed. About the same proportion — 35 percent of

black patients and 38 percent of white patients — said they had talked with their doctors about end-of-life care.

But there were differences when researchers asked patients about their illnesses. Fewer black patients than white patients with advanced cancer—32 percent vs. 47 percent — said their cancer was terminal, suggesting problems with communication be¬tween doctors and patients.

After the patients had died, researchers reviewed the care they received. They found that even if black patients had signed "do not resuscitate" orders, they were just as likely to get the life-prolonging treatment as black patients without DNR orders.

"These findings raise the concern that black patients receive inferior end-of-life care, a possibility underscored by disparities between black patients and white patients in certain objective care measures, such as pain management," the authors write.

"Although the reasons for our findings are not fully understood, white patients appear to have undefined advantages when it comes to receiving [end-of-life] care that reflects their values. Care of black patients at the [end of life] must be brought to the same standard.

Palliative Care is a great support for anyone

who is dealing with a serious illness at any stage, regardless of their prognosis. Its' purpose is to insure all patients and their loved ones have access to the best, most supportive care possible during a time of stress. See the link below for more information. You can also join their facebook page for more information. The link to it is on the URL listed below.

Thursday, September 30, 2010


Atul Gawande’s essay “Letting Go” won’t let go of me. I’m on my third reading since it appeared in The New Yorker in early August. Subtitled “What should medicine do when it can’t save your life,” the story holds particular power because of the clarity it brings to a subject so desperate for light: how we die.

Death was a tough enough nut before medical science became so adept at saving people who in another time would have bled to death, been defenseless against infection, or had no alternative when the organs they were born with gave out; when no one had to ask whether it’s murder to remove from artificial respiration an unaware and incoherent human being, living what Gawande terms “a warehoused oblivion.” Even ancient rites of passage have been supplanted by 24/7 monitors and an IV drip.

Gawande, a surgeon at Boston’s Brigham and Women’s Hospital, writes of a terminal patient whose sibling wanted to know if her sister was dying. “I wasn’t even sure what the word “dying” meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.”

What I find particularly helpful about Gawande’s piece is its insight into death’s shape-shifting reality, and the position it places doctors, who are expected to know what’s going to happen and when, what to do, explain it well, listen even better, and not trample on hope in the process. This gets even more dicey when cost enters the equation -- money and death are a toxic pairing for dialogue, and today cost and care are inextricably linked. The last thing medical staff want to do is destroy a patient’s hope, and yet what is the doctor to say when the truth, to the degree it is possible to know, is that the patient is dying. The only question is when.

At such a time, communication is as important to get right as a dose of medicine. “A family meeting is a procedure,” a palliative-care specialist tells Gawande, “and it requires no less skill than performing an operation.” And yet communication can be the least of a doctor’s skills.

Gawande writes: “Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs.”

It is a further complication that what a doctor says isn’t necessarily what a patient hears, even when both ostensibly speak the same language. New studies show that patients hear the good news and tend not to hear the bad. Additionally complicating is that, according to a hospice nurse Gawande quotes, patients can somehow understand a fatal diagnosis without acknowledging they are dying. So how should medical professionals negotiate that emotional chasm between working to prolong a patient’s life and telling the patient he or she is dying? Destroying hope does harm, and a patient’s capacity to hear harsh truth varies. But getting the patient and family to an understanding about dying carries this additional incentive: research increasingly shows that palliative treatment for the terminally ill improves quality of life and in some cases extends it.

The Community Ethics Committee, formed as an independent group to provide consultation services to the Harvard teaching hospitals, has brought a public voice to the bioethics dialogue for more than three years now. Our conversations seldom stray far from mortality. Should medical staff be required to administer CPR to a dying patient if the family wants it, even if CPR offers no therapeutic benefit and would make the patient’s last living experience one of violence? What is the toll on medical staff made to perform that act? When is it OK to harvest a dying pediatric patient’s organs? If an organ is available from another institution, but was harvested seconds or minutes earlier than your hospital deems appropriate, is it ethical to give the organ to a patient in desperate need? What matters more, the organ’s ethical taint, or the potential life saved? Is it ever OK for a doctor to participate in euthanasia or assist in suicide? If not, is it appropriate to prescribe medication for a dying patient strong enough to alleviate merciless pain when both prolonging life and ending it are possible outcomes?

And what is a death panel, anyway? I’ve thought about that peripheral subject only enough to dismiss it as a political fiction, but the public fear behind it is so very real and daunting, as is the distrust behind the fear.

“The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task,” Gawande writes. “But the enemy has superior forces. Eventually it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.”

Alas, contemporary medicine lacks both Custers and Lees, according to Gawande. “All-out treatment, we tell the terminally ill, is a train you can get off at any time -- just say when. But for most patients and their families this is asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. But our responsibility, in medicine, is to deal with human beings as they are.”

Which requires superior communication skills. This conversation, no mere mortal, might go on forever. So I’m hanging on to “Letting Go.”

-- Though Paul C. McLean is a member of the Community Ethics Committee, this blog entry does not necessarily express the views of the CEC or other members.

Wednesday, September 1, 2010

New impetus for palliative care - The Boston Globe

New Impetus for Palliative Care, Boston Globe Editorial, 9/1/10 (link below)

This brief editorial summarizes and supports the recent New Yorker article on palliative care written by Dr. Atul Sawande. His article is based on a survey of 4,493 Medicare patients. The research was originally published in the New England Journal of Medicine.

New impetus for palliative care - The Boston Globe

Friday, July 16, 2010

Family’s wish, doctors’ dilemma - The Boston Globe

Family’s wish, doctors’ dilemma - The Boston Globe

This article headlined in the Globe yesterday. It outlines the ethical framework by which hospitals and physicians, with ethics committees, discuss and then reach decisions in difficult cases where a families request may be declined.

Wednesday, July 14, 2010

Top 5 Reasons We Exist

Top 5 Reasons We – the Community Ethics Committee - Exist:

(1) Each hospital is required to have some kind of ethics service (a mechanism in place to address difficult ethical decisions and disagreements in health care as required by the Joint Commission on the Accreditation of Hospitals ( ))


(2) Hospital ethics committees are most often comprised of doctors, nurses, social workers, and other hospital staff – with only a couple community members to provide the “outside” voice of the community.


(3) Hospital ethics committees can sometimes lack broad representation from the diverse communities they serve,


(4) the cultural, religious, and moral values of local community members may not be adequately or comprehensively represented.


(5) As national health care policy discussions unfold and intensify, the need for inclusive ethics policies becomes increasingly relevant.

The Bottom Line: hospital ethics committees should have a direct line of communication with the community they serve!

Our Solution: In Boston, Harvard Medical School’s Division of Medical Ethics is piloting an innovative approach to broadening community representation and bridging the communications gap between health care practitioners and communities: a Community Ethics Committee (CEC).

Read more about it in the blog post (below) that describes our abstract to the ASBH conference.

Read more about Medical Ethics at Wikipedia:

Read more about Ethics Committees:

Same-Day Doctor's Visits

Hi, there -

This is an interesting development in medicine . . . "open access" to health care!

Apparently a doctor in Worcester (Dennis Dimitri) has been doing this in his private practice for four years and it seems to work great! A patient gets an appointment the same day based on a first-call, first-appointment system. There are pre-scheduled appointments, too, but there are also folks who can just walk in! The appointments are alittle longer than the traditional 10-minute slot and the reports are that patient satisfaction rises with this open access system in place.

It's an idea that was presented by the Institute of Healthcare Improvement (whose head, Dr. Donald Berwick, now oversees the Centers for Medicare and Medicaid Services), apparently pioneered by Kaiser Permanente many years ago. Less than 20% of practices use mostly same-day appointments.

Anyway, just another thing to "put in the hopper" in looking at health care and what works best for both patient and providers.

Our poster abstract for the ASBH conference in San Diego

Will you be at the ASBH (American Society for Bioethics & Humanities) conference this fall?

Our poster was accepted, and we're looking forward to sharing our story and our model with you.

Abstract Text:

"Community Voices and Views in Clinical Bioethics Policies: Piloting an Innovative Approach to Broadening Community Representation"

Each hospital must have some kind of ethics service – a mechanism in place to address difficult ethical decisions and disagreements in health care as required by the Joint Commission on the Accreditation of Hospitals. Typically, hospital ethics committees are comprised of medical physicians, nurses, social workers, and other hospital staff, sometimes including a community member who provides an “outside” voice. As a result, hospital ethics committees can sometimes lack broad representation from the diverse communities they serve, and the cultural, religious, and moral values of local community members may not be adequately or comprehensively represented. As national health care policy discussions unfold and intensify, the need for inclusive ethics policies becomes increasingly relevant. In Boston, Harvard Medical School’s Division of Medical Ethics is piloting an innovative approach to broadening community representation and bridging the communications gap between health care practitioners and communities: a Community Ethics Committee (CEC). This group, comprised completely of community members not employed by health care facilities, has been active for three years and is diverse in terms of religious affiliation, age, socioeconomic status, cultural and language groups, and educational backgrounds. When the ethics committee at a hospital wants a community perspective and input on an issue, particularly in the development of policy, a request is made for the CEC to review and comment. Issues that the CEC has addressed include pediatric organ donation using cardiac death criteria, non-therapeutic CPR, staff interactions with patients via social internet media, and palliative sedation. The CEC works with a wide array of local communities to gather opinions and perspectives on a given issue for the purpose of providing policy recommendations. The team augments their outreach with several customized social media technologies, including blogs and Twitter. As part of its mission and as an adjunct to formal policy recommendations to ethics committees at participating hospitals, the CEC plans to conduct educational outreach to local communities, expanding the dialogue which the committee members began in its policy review. Additionally, several CEC members now serve as community representatives on hospital ethics committees, increasing their exposure to the issues addressed by these groups. We describe the current CEC model and recommend that CECs be replicated throughout the country to enable improved representation and facilitate meaningful communication between practitioners and communities. Ultimately, we envision a network of CECs that would share findings at the regional and national levels.
Primary Contributor: Lori Bruce , M.A. (Presenting) ;

Co-Contributors: Carol L Powers, J.D. , HMS Community Ethics Committee, and Christine Mitchell , RN, MS, MTS , Harvard Medical School

Happy 3rd birthday!

This week, we officially celebrate our 3rd year serving the greater Boston community!
As we reflect on our goals for the upcoming year, we wanted you to know that our
primary focus is increasing our communication with the community - that means
more requests for input from you on various medical ethics policies, and that also means we
intend to post more summaries of the various policies we analyze.   We look forward
to deepening our relationships with many Boston-based communities so that we can
better represent you to the Harvard Teaching Hospitals.

We have recently filed for status as a non-profit, and look forward to interacting with
the national bioethics community at this year's American Society for Bioethics & Humanities conference.
If you attend, please stop by our poster and visit us. 

Thank you, Boston, for your support!

Tuesday, July 13, 2010

Some Docs avoid Facebook, others seek a web presence

The CEC has completed an extensive review of whether doctors & nurses & other hospital staff should have a web presence.  Complex ethical issues include:  what should a doc do if a patient "friends" her?  What if a patient posts suicide threats and the doctor/nurse see these messages after googling the patient?? Should the practitioners reach out to the patient, risking embaressment that they were searching for their patient online?    In related news, USA Today just published an article about some doctors who love Facebook and use it in their practice, and how others avoid it for fear of legal problems.

What do you think??

Wednesday, July 7, 2010

Screams from Greek stage aim for doctors’ hearts - The Boston Globe

Screams from Greek stage aim for doctors’ hearts - The Boston Globe

As a person who was priveleged to see this performance, I believe this article summarizes how powerfully readings from Greek tragedies can fasciitate thoughtful discussion among medical professionals, ethicists and others around the complex issues of humane end of life care.

Wednesday, June 30, 2010

Reducing Health Care Costs

Hi, there -

This was an interesting piece of news provided by the actuarial community!! They concluded that if patients knew what things cost, medical care might very well become more affordable!! What a concept - letting folks know what things cost! Being transparent! Giving the primary stakeholder some say! Amazing concept, don't you think? It took some actuaries to figure out it - good for them!

Step by step, openness may become the norm.

"Health depends far more than on brute technology" - Michael Ruse

A touching story about delirium suffered by patients in the hospital -
it's much more common than we realize.

This article cites last Sunday's New York Times article, "Hallucinations in Hospital Pose Risk to Elderly":

Monday, June 28, 2010

News story on the dramatic readings!

Here is the Boston Herald story about the Harvard Bioethics Course evening session on End-of-Life care involving dramatic readings of Greek tragedies which Bryan Doerries and the Theatre of War company produced:

Wednesday, June 23, 2010

Suicide Tourist

Hi, there -

Earlier today, a friend told me about this Frontline piece called "Suicide Tourist" about a gentleman with ALS who decided to travel to Switzerland to be able to control his death.

More and more folks are considering this as a viable option . . . A British couple - Edward Downes and his wife - chose to go to Switzerland last summer in order to die together in the way and at the time of their own choosing. If any of you have known someone with ALS, it is an excruciating disease in that you are still "in there" but you slowly lose control of all your body's functions. Your body fails you . . . as Craig Ewert says, "you become an empty shell." And the timely facing of decisions that are inevitably on the horizon takes great courage - more courage than I possess! As Craig observes - "Not my choice if I had other options . . ."

But is it right to facilitate an individual's choice to control the time and manner in which he or she shall die? What is right and what is wrong? Our government and Britain's government and many governments have decided as a matter of public policy that choosing suicide - either through euthanasia (when a doctor administers the fatal dose) or through assisted suicide (when the patient self-administers the fatal dose) is wrong. But what about palliative sedation and how is treating someone's existential pain by sedation any different than euthanasia?

Is the ethical justification of "double effect" (when the primary intention is a patient's good - to relieve suffering - while the secondary effect may be a patient's death) sufficient protection to conclude such a death is good and right and should be condoned by our laws?

Personally, I agree with Bob Truog that the rationale of "double effect" is a figurative "fig leaf" - a justification for a difficult decision that has to be determined by each individual patient's need and situation and not by a doctor's intention. All that's to say, I do not know the answer. All I know is that some people suffer greatly and there may be times when compassion cries out a demand for relief. Even Jesus' side was pierced . . .

Anyway, I am rambling to no conclusion so here's the website link. If it doesn't work it was a Frontline piece called "Suicide Tourist" . . .

It is hard to watch . . . more precisely, it is excruciating to watch. But you have to think, if it is hard for us to watch, sitting safely in front of our computers, how much harder it must be to live such a life and to make such a decision.

May the calm of our hearts be stirred by great compassion -


Sunday, June 20, 2010

Medical Ethics on Father's Day??

Hi, there -

Here is a poignant piece of memoir from today's NYTimes . . . What Broke My Father's Heart. Having just experienced Theater of War's readings from two Greek plays on end-of-life issues, this story provides a reverberating echo - do we, should we, may we control our deaths? . . . our living seems to have become so medicalized, is there a way off the merry-go-round at the end?

I have left specific directions for my children in this regard . . . have you?

Happy Father's Day to all of those biological, emotional, spiritual Dads out there. And many thanks to the Father above who providentially cares for us all . . .


Wednesday, June 16, 2010

How to save one life, or more - The Boston Globe

How to save one life, or more - The Boston Globe

Tuesday, June 15, 2010

Is doing a TV show unethical??

Well, here's an interesting question - does filming a TV show in a hospital step over any bounds of ethical behavior? . . . or good taste? I'm sure some folks get their medical information primarily through their TVs, so some sense arises of doing a public service by letting those folks know what the issues are in a big downtown hospital. But does Boston Med (or Hopkins for that matter?) create some discomfort that is hard to articulate but definitely there in your gut?

When hospital interactions are filmed in "real time" is something important lost in the exchange? Is there a loss of professionalism? Is there a loss of protection of the patient and their family? Is there a sense of loss of some aspect of the "art of medicine", which arguably is practiced in the realm of private interactions between patient and physician? Is it a loss of boundaries between caregiver and scene-stealer? And what about the "coincidence" that there is a death at one hospital being filmed that leads to a transplant at another hospital, also being filmed?

And as soon as we raise the question what "should" be done, we are in the realm of ethics. What should be done? Is filming in a hospital setting inherently wrong? Do patient consents really mean anything when people come to a hospital always under duress with a critical need to be healed, if not to be saved, and not to be filmed?

What do you think?


Monday, June 14, 2010

Getting Paid to Comply

Hi, there -

Here's an interesting piece . . . is it "right" to pay patients to take their medications faithfully or is it coercion? (I thought coercion was the use of force - I suppose money can be forceful, but isn't it also a reward and therefore a "good" or a benefit?)

Imposing a cost/benefit analysis, it costs less to pay the reward than it does to pay for the extra healthcare costs. And there is a trend here - it seems paying someone to do what they should do is taking hold - they are doing it in schools to raise grades and test scores. Why not in health care? We are becoming a society that does not give if it doesn't get, so decisions in the realm of medical ethics must be based upon social mores of our time, right? And the social mores of our time say, pay patients for compliance.

So, what do you think?


You are invited to a performance! This Thursday, June 17, 2010

Dramatic Reading of Scenes from Philoctetes & Women of Trachis

Thursday, June 17, 2010
Reception: 5:45pm

Performance: 6:15-­‐8:30pm
Harvard Medical School, Medical Education Center, Walter Amphitheater

2nd Floor, 260 Longwood Avenue, Boston
END OF LIFE is an innovative project that presents readings of ancient Greek plays as a catalyst for

town hall discussions with the public about suffering and death as it touches patients, families, and

health professionals who work in the fields of medicine, palliative care, hospice, geriatrics, nursing and

clinical bioethics. This unique, participatory event is intended to promote healthy discussion among

diverse communities—public and professional-- fostering compassion, cooperation, and understanding

about living with chronic suffering and the mortality we all share.



RSVP to the Division of Medical Ethics:

or call 617-432-2570.

To become a part of the End of Life Project, host a performance in your community, support our efforts, continue the discussion online, or for additional information, please contact Bryan Doerries [Director/Translator] or Phyllis Kaufman [Producer] at Visit

Actors: Renzo Ampuero, Graduate of American Repertory Theater’s Institute for Advanced Theater Training at Harvard University

Kelley Green, Graduate of American Repertory Theater’s Institute for Advanced Theater Training at
Harvard University

Jay O. Sanders, Film/TV Credits: Edge of Darkness, Revolutionary Road, JFK

Tax Credits for Organ Donation?!?!

At the Congress of the Humanities and Social Sciences taking place this week at Montreal's Concordia University, Mr. De Wispelaere an ethicist and philopsopher propsosed a new measure to increase organ donation rates in Canada.

The idea is turning to a second consenter — a spouse, next-of-kin or family friend — who would openly discuss the idea of organ donation with the patient at a less emotional time rather than when the family is grieving and medical staff may be reluctant to approach them.

The second part of the idea is to offer a government tax credit to the second consenter after the donor's death, whether the organs are used for transplant or not.

To read more, go to:

Friday, June 11, 2010

Bringing Comparison Shopping to the Doctor’s Office

I came across this article in the New York Times and thought it was quite interesting.

A link to the article is posted below-

Ideally, price transparency will lead to higher quality and lower cost health care. However, it may also have several unintended consequences such as pushing smaller provider groups out of practice and lowering appropriate and necessary ultilization rates of health care services.

In any case, bringing price transparency to health care has the power to significantly change the way health care is demanded and consumed in this country.

Putting the human touch in health care - The Boston Globe

Putting the human touch in health care - The Boston Globe

Thursday, June 10, 2010

Uninsured more likely to die in hospital

Hi, there -

An interesting article appeared today - I am linking to Dr. Gupta's blog since he presents the information more clearly than other sites have done.

So, they aren't sure why, but the uninsured are more likely to die in the hospital.
Is it because the uninsured delay going to the hospital? Very likely . . .
Is it because the uninsured receive fewer high-cost life-saving treatments? Quite possibly . . .
Is it because the uninsured are more likely to receive substandard care? Seems to be the case . . .

Now the question is, what do we do about it?? As someone whose child was very ill many years ago and had no insurance coverage (the company refused to cover him because he had a "pre-existing condition in the womb"!), I did not fully appreciate the fact that he might have been more likely to die simply because he was uninsured.

Disclosure might be necessary as a first step to transparency - perhaps a sign should be placed at the foot of each bed saying "NOTICE: if you are uninsured, you are more likely to die in the hospital than the insured patient in the bed next to you. Sorry for the inconvenience."

Even though I know that our area hospitals go out of their way to provide free care to patients who are uninsured and vulnerable, this article gives us something sobering to think about.


Monday, June 7, 2010

Medical Ethics and Interrogations

Just saw this in today's NY Times and found it to be thought-provoking and troubling. Reminds me of a piece written over two centuries ago by an executioner during the French Revolution and his understanding of a professional executioner's role in society - doing what others do not wish to do . . . doing what others don't want to know about.

But now we know . . .

Happy Monday -


Wednesday, May 19, 2010

National hospice org advocates for palliative sedation

NHPCO ( Releases Statement and Commentary on Palliative Sedation Therapy to Promote Greater Understanding

Complete document found at:

(Alexandria, Va) – For the very limited number of imminently dying patients whose pain is intolerable and unresponsive to other palliative interventions, the National Hospice and Palliative Care Organization believes that palliative sedation can be a treatment option that should be considered by healthcare providers, patients, and families.

Palliative sedation refers to the lowing of patient consciousness using medications for the purpose of limiting patient awareness of suffering that is intractable and intolerable.

In releasing its position statement and commentary on the "Use of Palliative Sedation in Imminently Dying Terminally Ill Patients," NHPCO seeks to:

1. clarify the position of NHPCO on the use of palliative sedation for patients at the end of life,

2. recommend questions and issues to be addressed when palliative sedation is being considered, and

3. assist health care organizations in the development of policies for the use of palliative sedation.

Approved by the NHPCO board of directors in December 2009, the statement and commentary appears in the May 2010 issue of The Journal of Pain and Symptom Management, and is now publicly available.

The position statement consists of six core tenets:
For the small number of imminently dying patients whose suffering is intolerable and refractory, NHPCO supports making the option of palliative sedation, delivered by highly trained healthcare professionals acting as an interdisciplinary team, available to patients.

Since the goal is symptom relief (and not unconsciousness per se), sedation should be titrated to reduce consciousness to the minimum level necessary to render symptoms tolerable. For most patients this will mean less than total unconsciousness, allowing the patient to rest comfortably, but to be aroused.

Interdisciplinary Evaluation
There must be a physician with expertise in palliative care leading the intervention. Patients suffering at the end of life will receive optimal benefit from the involvement of a highly-skilled interdisciplinary team. NHPCO recommends convening an interdisciplinary conference specifically about the use of palliative sedation for each patient with whom it is being considered. In all cases, care must be patient- and family-centered. If the needs of the patient and family differ, the primary focus is on the needs of the patient.

Professionals involved in the process of providing palliative sedation must have training and competence in this particular intervention. Providers should be engaged in ongoing education that addresses symptom assessment and management. Further, facility with integration of the ethical considerations related to use of palliative sedation is essential.

Concerning Existential Suffering
Suffering can occur even when physical symptoms are well controlled. As with any other type of suffering, NHPCO believes that hospice and palliative care professionals have an ethical obligation to respond to existential suffering using the knowledge, tools, and expertise of the interdisciplinary team. It should be noted that the lack of concurrence by the NHPCO ethics committee on the definition and assessment of existential suffering precludes a recommendation regarding the use of palliative sedation for existential suffering. NHPCO strongly urges providers to carefully consider this question and supports further ethical discussion.

Relationship to Euthanasia and Assisted Suicide
Properly administered, palliative sedation of patients who are imminently dying is not the proximate cause of patient death, nor is death a means to achieve symptom relief in palliative sedation. As such, palliative sedation is categorically distinct from euthanasia and assisted suicide.

This statement addresses the use of palliative sedation only for patients who are terminally ill and whose death is imminent.

"This document provides valuable guidance about a complex issue that—while not frequently used—is often misunderstood," said J. Donald Schumacher, NHPCO president and CEO. "Our intention is to address the ethical issues surrounding palliative sedation and help hospice and palliative care providers create policies and guidelines to ensure they are well-prepared concerning this treatment option."

"We are not calling for an increase in the practice of palliative sedation but want to take a major step forward to redress some of the common misconceptions," added Schumacher.

Developed by the Palliative Sedation Task Force of the NHPCO Ethics Committee, members of the task force wanted to indentify and analyze the most robust evidence and arguments about palliative sedation and summarize that material in a way that would be helpful to the NHPCO membership.

Timothy W. Kirk, who led the task force commented, "We want to stress in this document that palliative sedation, like all interventions in palliative care, needs to be part of evidence-based practice. There are evidence-based clinical protocols based on a growing body of research that many clinicians are not aware of, but should be. Simply turning up current pain medications is not evidence-based sedation. We have a moral obligation to give our patients the best care possible, and this document is intended to help providers reflect on the nature of that obligation when it comes to the practice of palliative sedation."

The complete statement and commentary, as it appears in JPSM, is available at the NHPCO website (go to and click on the link for NHPCO Ethical Statements and Position Statements).

The cover story of NewsLine, May 2010, is about the development of this document.

Jon Radulovic, NHPCO, Vice President of Communications
1731 King Street
Suite 100
Alexandria, VA 22314