ER Doc's Book: "It's OK to Die"

It’s probably not a great marketing strategy to devote a book to a subject nobody wants to talk or hear about. But maybe the importance of the story might transcend the reluctance to engage. I hope that’s the case with “It’s OK to Die.”

Alabama Emergency Physician Monica Williams-Murphy and her husband and co-author, Kristian Murphy, clearly believe in the importance of their subject, and I’m impressed with their dedication and their vision. It deserves to find an audience with physicians and the general public alike. 

“From a strictly scientific-materialist perspective, we are the first generation of any species to keep our weakest, oldest, and actively-dying members alive by artificial means for extended periods of time,” Dr. Murphy writes. “It is estimated that 25 billion dollars a year is spent on people who ‘live’ on ventilators.”

When a person can no longer speak or comprehend, loved ones face decisions they’re hard-pressed to understand, let alone make wisely and compassionately. A dying patient’s best interests regularly fall victim to the quandary. “It’s OK to Die” is a user’s guide to end-of-life decision-making, told compellingly and accessibly while underscoring the importance for families of not putting off these conversations. “It’s OK to Die” shares real scenarios as it walks readers toward making smart choices for themselves, and putting those choices in writing. 

“We have reached an historical era in which most modern American have become strangers to death,” the authors write. “Except for the elderly themselves, the rest of us are one or two generations removed from experiencing death as part of life.”

Even someone as clear and purposeful as Dr. Murphy waited nearly too long. She didn’t have the conversation with her own beloved grandmother until the latter was in the process of dying. The conversation between the two of them, and with Dr. Murphy and her extended family, is moving and revealing of the importance of such a dialogue to both the living and the dying.

Dr. Murphy and her husband also write of making choices without knowing their loved one’s wishes -- and living with the regrets of decisions made in fear.

“Loving someone does not obligate you to use every medical intervention available to prolong his life,” Dr. Murphy writes. “In fact, deeply caring for someone can mean that you should help to make him comfortable -- and let him go.”

“It’s OK to Die” is a straightforward look at the normal dying process. It is for doctors who struggle to tell the patient, You’re dying, and for patients and families who don’t want to hear it. 

As an Emergency physician -- not a palliative care or hospice doctor -- Dr. Murphy offers a unique insight into end-of-life care. Emergency physicians invariably are tasked with making urgent decisions with very little information -- and quite possibly no history whatsoever with a patient. In such circumstances, regrettable decisions are made -- seldom with the result of a “good death.”

“So, let me ask you,” Dr. Murphy writes. “Why would a 90-year-old woman with bedsores, who cannot feed herself, who can’t walk, and is chronically confused, be transferred to my emergency department for me to save her life, if she should suddenly become even more ill? For the record, this happens all the time.”

Kristian Murphy and his wife are children, grandchildren, and parents. In their own lives, they’ve experienced good and bad decision-making at end of life. Their insights are personal, and their recommendations hold promise for our dysfunctional healthcare system.

Dr. Murphy is a strong proponent of good palliative care, advance directives (especially the systemically accessible POLST or, in Massachusetts, MOLST forms), and the Personal Self-Assessment Scale, a tool for physicians to help patients “(make) medical decisions in advance based on objective markets of quality of life.”

Quality of life is such a loaded phrase, and the meaning or perception changes greatly depending who uses it. So ideally, answering questions about quality of life are best left to the individual patient. 

And yet, patient choice can itself result in harm both to patient or the care team. So perhaps another appropriate market for this book is state politicians, especially the legislators and governors in Idaho and Oklahoma who put the force of law behind provision of bad end-of-life care.

If they’ll listen to any voice of reason, maybe it’s that of an Alabama ER doctor, who just might stand a chance of convincing people there’s not a death panel lurking behind every end-of-life conversation. (In one vignette, Dr. Murphy treats a dying man whose wife insists that “hospice kills you.”) 

The subject may be one that nobody wants to talk about, but the book is one everyone with a pulse should read, while they can.  

A Dignified End, or a Suicide?

I’ve surprised friends recently with the news that, at the same time they vote for president in November, they’ll also be asked to decide whether Massachusetts should adopt the Death With Dignity Initiative, and make it legal for physicians in the state to prescribe a lethal dose of medicine to terminally ill patients who have asked for it.

Their surprised reaction has in turn surprised me. I would have thought the initiative would be well known by now. Perhaps this is another indication that voters don’t really engage the issues or candidates till much closer to Election Day.

But perhaps it’s also an indication of what is unique about the Community Ethics Committee -- that we discuss and consider important questions that many people don’t even want to think about, especially as relates to medical care at the end of life.

Soon enough, all Massachusetts voters will need to think about the initiative, and how they decide will no doubt be reflected in what they choose to call it: Death With Dignity or Physician Assisted Suicide. Proponents of the initiative say using such an emotionally charged and judgmental term as suicide is misleading and does a disservice to the terminally ill patients who will benefit from the practice. Opponents say suicide is the clearest way to describe ending one’s life, and to do otherwise is euphemistic.

Massachusetts is hardly the first to engage these questions. Political efforts are underway to legalize euthanasia in Quebec and British Columbia. DWD/PAS is now legal in both Oregon and Washington state, by decision of voters.

As the Community Ethics Committee has studied and discussed DWD/PAS, and I’ve tried to sort out for myself whether Massachusetts would be wise to legalize it, two resources have risen to the top in helping me to decide. Each is fairly lopsided in its viewpoint. But each is also very well informed, with varied voices speaking directly to the essential questions.

“How to Die in Oregon.” a Sundance award-winning 2011 documentary film, clearly portrays the need for such a law, as perceived by DWD/PAS proponents. It is hard to watch but very real, compelling, and makes a convincing case for the compassion behind this movement. (Available here, but copies also are available within the Minuteman Library Network)

Less clear is whether that compassion is sufficient to overcome the harm feared by opponents when society gives physicians the moral, ethical and legal sanction to participate in killing. 

That side of the argument is well represented on the CBC Radio program “The Enright Files,” which devoted an hour to the subject. In it, host Michael Enright revisits conversations he has had with Balfour Mount, described as the founder and creator of term palliative care. Those conversations are followed by a panel of doctors, nurses, ethicists and advocates discussing what is meant by a good death and the right to die.

By the time Massachusetts voters really engage the subject, there is bound to be a lot of heat and not so much light from the two sides. Voters might do no better than these two resources for shedding light and making sense of the debate.

And those who take the time to watch and listen to both may be struck, as I was, by the similarity between two central characters: Cody Curtis, a patient who benefitted from Oregon’s DWD/PAS law, and Balfour Mount, who might question whether benefit is the right word. Each is extremely thoughtful and compassionate.

And listening to them requires patience. Each speaks at times in sentences and phrases interrupted by the gasps for breath that cancer causes without regard for what side you’re on.

Start the Conversation Now

One recent evening in the Martin Luther King Jr. Room at Brookline High School, a cardiologist was in the middle of a presentation on “Communication and Care at the End of Life,” when he was asked when a family ought to begin discussing the challenging subject.

“In high school,” he said. “Before college.”

There was laughter in a room filled mostly with senior citizens. The cardiologist smiled, too. But it wasn’t a joke.

In fact, he said, high school students are of an age to comprehend the inevitability of death, and waiting till they’ve left for college is to miss an opportunity that may not come again.

Few hearing the advice were of an age likely to have children in high school. Grandchildren, perhaps. And so for them, the advice for when to begin the conversation would be: Now.

“These discussions take time,” said Dr. Wilfred Mamuya, of the Lown Cardiovascular Center, “and multiple meetings. It has to percolate. And if the person is not ready, they’re not ready. You just have to bring it up and bring it up and bring it up again.”

Why be so persistent with a conversation that nobody seems to want to have? Because so many people who say they want a “good death” and to die at home, die instead hooked up to ventilators and feeding tubes in an ICU, while families and physicians sort out best interests and difficult choices for a person who can no longer speak for him or herself.

In the speech, a presentation of the Brookline Community Aging Network, Dr. Mamuya told of the “communication triad: patient, family, and caregivers” central to the end-of-life conversation. (You can read Dr. Mamuya’s recent column on end-of-life care here.) 

Although a few in attendance were under the age of 60, and there were one or two couples, mostly the listeners consisted of elderly women. And a significant piece of the triad was missing: the family members who will face the hard decisions, perhaps without a real sense of what their parent would have wanted.

Dr. Mamuya spoke of the problems inherent in a family’s earnest desire to “do everything” to prolong a life, when “doing everything” so often runs counter to the goal of a “good death.” He discussed advance directives, and specifically the Five Wishes, and the importance of putting such wishes into writing, and updating them every five years.

I left the presentation much as I’d arrived, concerned that physicians, as a rule, aren’t especially adept at the end-of-life conversation, and that the likes of Dr. Mamuya are exceptions to the rule.

But I also left more convinced that while the conversation with a physician is important, the place to really improve the likelihood of a “good death” is in ongoing conversation among family.

Starting in high school. Or, if it’s too late for that, starting now.

Is God Welcome on Rounds?

In coming to know values and best interests, physicians need to have a sense of a patient’s religious faith. Indeed, not knowing can complicate care decisions. But is there benefit to a patient knowing a physician’s religious beliefs? Or is such knowledge unhelpful and even burdensome?

The Chicago Tribune sheds light on the questions with an insightful look at the Program on Medicine and Religion at the University of Chicago.

Richard Sloan, professor of behavioral medicine at Columbia University and author of "Blind Faith: The Unholy Alliance of Religion and Medicine," says “there’s too much at risk” to bring the physician’s religion into the relationship with the patient. "No matter how smart patients are, they're still subordinate in a relationship with a physician," Sloan says.

And yet for some physicians, religious faith can’t help but inform care provided. “What's not straightforward is how you help people maintain happiness when they're hit with a devastating illness," says Dr. Alex Lickerman, a practicing Buddhist and physician at the University of Chicago. "It's more real and more satisfying as I've continued in my Buddhist practice. My interest in really helping people not just with their physical symptoms has really expanded. My desire has redefined itself."

When Resuscitation Is Obligatory

From Thaddeus Pope’s blog: 

"Dr. Monica Williams-Murphy vividly recalls performing emergency chest compressions on a 100-year-old nursing home patient with advanced dementia.  Lacking a Do Not Resuscitate order, Williams-Murphy was obligated to do all she could to try to save a woman that she knew was beyond saving. 'I wasn't going to bring her back to something better.' That experience got the Huntsville, Alabama Hospital emergency department physician thinking about why frail elderly people often get the 'full-court medical press' at the end, rather than being allowed to slip away peacefully. The result is 'It's OK to Die,' a new self-published book that she hopes spurs readers to have those difficult but important conversations about end-of-life decisions."

data from Switzerland and Oregon, and Quebec's proposed legislation

Data now released from Switzerland on numbers of assisted suicides (supplementing the earlier mention below):  http://www.swissinfo.ch/eng/swiss_news/First_data_on_assisted_suicide_published.html?cid=32370072

From Oregon, statistics are available for 2011:   http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year14.pdf   and criticism from opponents: http://www.bioedge.org/index.php/bioethics/bioethics_article/10000 .

In Quebec, the question shifts from DWD/PAS to assisting death as part of end-of-life palliative care
http://www.theglobeandmail.com/news/national/quebec-report-calls-for-euthanasia-legislation/article2377993/
CEC members have discussed many times the impact of use of language and terminology; the headlines might have sensationalized the topic by claiming "Quebec report calls for euthanasia legislation".   Euthanasia is often seen as death caused by others; DWD/PAS supporters would point out that the patient is initiating the action.  It is a difficult enough topic without bringing in loaded words, but the quotes do include euthanasia as the term used in the discussions.   Interestingly, local supporters of PAS (Living with Dignity) don't support the change in approach.

When Legislators Do Harm

Has Idaho just become the worst place in the country to be an ICU nurse?

Both of Idaho’s legislative bodies have now approved a measure that supporters say is necessary to assure respect for dying patients. Once signed by the governor, doctors and nurses in the state will be strictly limited, in the words of the Idaho Statesman, “on when they can withhold care to dying patients without the patient's consent.”

Sounds reasonable -- so long as you accept that what the medical team intends to do is “withhold care.” But is “care” being withheld, or is the treatment insisted upon by the patient’s family (because the patient is sadly beyond communicating more than an occasional wince or agonized sigh) of no therapeutic value to a dying patient?

Has the care in question become futile at best, harmful at worst? And who, in all of this, is actually looking out for the patient’s best interests?

When dying is in process, it’s hard enough on all concerned -- family, patient, care team -- that there are no more therapeutic options. But for Idaho to create a situation that devalues medical judgement, and forces provision of futile care, is to turn non-maleficence on its head: the state is essentially insisting that the doctors and nurses do harm. 

It’s essential to good medical practice that the benefit to the patient outweighs any potential harm. To be ordered to deliver harm without benefit leaves the ICU nurse with a choice: either refuse to provide treatment that goes against your patient’s best interests, and leave it to a colleague; or suck it up and try not to think about what the patient is feeling.

One vote against the bill came from House Minority Leader John Rusche, who was concerned at the impact on medical staff making difficult decisions about dying patients. Rusche is also a physician.

Swiss Trends in Assisted Suicide

In a recent blog, Kathy Kaditz suggested we look to models outside of the U.S. that have death with dignity/physician assisted suicide laws. Here is a summary of Switzerland's most recent experience in Switzerland, which instituted DWD/PAS in 1942.

bites of bioethics, life and death

The Oxford Centre for Neuroethics  (using the UK spelling) posts short discussions on topics related to our ongoing discussion.   Many are thought-provoking.   The talks are available at their website and on iTunes.
http://www.neuroethics.ox.ac.uk/bio-ethics_bites

One in particular (scroll down to Peter Singer) is on topic as we explore the Massachusetts ballot initiative to legalize physician assisted suicide.

PETER SINGER (MP3) - Life and Death

If a patient decides she doesn’t want to live any longer, should she be allowed to die? Should she be allowed to kill herself? If a patient is no person to decide – perhaps she’s in a coma – then should somebody else be able to decide to kill her? Who? Is there a moral difference between killing and allowing someone to die? And is the role of the doctor always to prolong life? Peter Singer, of Princeton University, is one of the world’s leading bio-ethicists, and has been reflecting on life and death issues for four decades.  

Peter Singer first became well-known internationally after the publication of Animal Liberation in 1975. Since then he has written, co-authored, edited or co-edited more than 40 other books, including Practical Ethics; The Expanding Circle; How Are We to Live?, Rethinking Life and Death, The Ethics of What We Eat (with Jim Mason) and most recently, The Life You Can Save. Outside academic life, Peter Singer is a member of the Leadership Council of Oxfam America, a Vice-President of the Royal Society for the Prevention of Cruelty to Animals (UK),and a member of the Advisory Board of GiveWell.net. In 2005 Time magazine named him one of the 100 most influential people in the world.

Occupy Death? Absolutely!!

This is such a good TED lecture - Dr. Peter Saul speaks right to the point of so many of the topics the Community Ethics Committee has wrestled with in our end-of-life discussions.

The medicalization of death; becoming political and taking the vocabulary of the "natural birth" movement from the 1980s and using that same language to talk about a "natural death" in the 2010s; and becoming proactive about taking this discussion away from euthanasia and physician assisted suicide and instead talking about occupying death - having the Conversation and sparing our friends and families the trauma of not talking about what we all know will come.

Ontario’s CCB vs. Texas Advance Directives Act

Prolonging life is a specialty of our time. Knowing when to stop trying -- that, we’re not so good at.

State legislators increasingly are responding to decision-making disputes in end-of-life care. But like the medical decisions inspiring them, the legislation holds great potential for doing harm in an effort to do good.

In Idaho, State Senator Sheryl L. Nuxoll is sponsor of the "Discrimination in Denial of Life-Preserving Treatment Act," which has passed the Senate and awaits House vote. It is, essentially, an anti-futility bill.

In Alaska, State Senator Fred Dyson proposes bolstering a competent patient’s exercise of consent as related to withdrawal of a Do Not Resuscitate Order. “The question is whether current law gives a patient, with capacity, the right to make a DNR order ineffective,” Dyson says. “I maintain it does, and SB 172 seeks to clarify the meaning of existing language in the law."

Meanwhile, among palliative and hospice chat groups on Twitter and other social networks, proponents want more states to adopt something like the Texas Advance Directives Act, or TADA. 

Dr. Robert Truog has written extensively about futile care and Texas law, and recently returned to the subject in the New England Journal of Medicine. The NEJM piece, indeed, inspired a recent flurry of pro-TADA tweets.

Truog writes that TADA “has defined one very concrete approach to addressing these dilemmas. When families demand treatments that have an exceedingly low likelihood of success or that sustain life of such low quality that one might reasonably say it is of no benefit to the patient, Texas law allows physicians to refuse to provide such treatments. Under the Texas legislation, demands by families for treatments that appear to meet these criteria are adjudicated by a hospital-based committee, and if the committee agrees with the clinicians, and if other providers cannot be located who are willing to provide such care, then treatment may be withdrawn without the permission of the patient’s surrogate.”

What TADA does well is resolve intractable disputes in a way the legal system cannot (terminal patients tend to die before their day in court ever arrives). With no dispute resolution, prolonging the dying process for no therapeutic or curative purpose can do harm to the care givers and patient alike.

“Although Texas has the most experience with this approach,” Truog writes, “other states are showing interest in similar proposals that address both the financial implications of providing allegedly inappropriate care and the concerns of clinicians who must endure the moral burdens and burnout associated with being compelled to provide treatments they believe are ethically wrong.”

TADA succeeds by eliminating that eventual day in court, which is something of an exercise in futility itself. TADA keeps the decision within the hospital, with an internal board deciding. But even if all cases are decided reasonably and well, with the patient’s best interests upheld, the big loser in the TADA scenario is due process, the constitutional protection of individual rights with a guaranteed day in court. As a result, with TADA, efficient resolution comes at the potential expense of public buy-in and trust.

Perhaps these cases of intractable dispute are so extreme, and so relatively few, that an end run around due process is acceptable. But if due process is worth upholding in all possible cases, is there an alternative way to ensure expedience, fairness and the patient’s best interests?

I think the answer is yes -- but the model is found, not in Texas, but in Ontario, Canada. Under the Health Care Consent Act, established in the 1990s, Ontario has created responsive appellate panel known as the Consent and Capacity Board, or CCB. It consists of lawyers, psychiatrists and members of the general public appointed by the lieutenant governor. It considers cases concerning mental health, consent, privacy, and substitute decisions.

In resolving intractable disputes, the CCB has an impressive record of looking out for the patient’s best interest. In one recent case, the CCB sympathized with the view that a patient’s care had become futile, and yet ruled for the patient’s family -- because the physicians hadn’t bothered to determine or consider the patient’s religious beliefs, and how the values might influence care decisions. In essence, the physicians sought to make decisions without really knowing the patient, and the CCB called them on it. In this case, the CCB passed the “best interests” test with flying colors.

The ethicist Peter Singer has written of medical futility: “There is no consensus about these cases, and they are horribly complicated. They require striking a balance between the desires of families and the moral distress of health care teams.”

The courts can’t do this with the timeliness required, and no matter how well structured, a Texas-style internal hospital board can carry the taint of power imbalance.

Disputes over futility have been a recurring theme of CEC studies, especially in Withholding Non-therapeutic CPR. As my colleague Carol Powers reminded me, “The CEC's report really focused on balancing the patient's rightful authority to establish his or her own ‘overall goals of care,’ based upon the patient's values and cultural biases, with the physician's rightful authority to determine which medical treatments will or won't accomplish those goals of care.”

Law professor Hilary Young of Ontario’s Queen’s University writes: “There should be a process to ensure that continued life support is, in fact, medically inappropriate, and to inform and counsel (substitute decision-makers) and family members. We must give families a reasonable amount of time to come to terms with the tragedy they face.”

To do otherwise, Young writes, “creates a dilemma for doctors and amounts to an undesirable legal entitlement to health care.”

Both the CCB and TADA deal effectively with the “reasonable amount of time” issue. But the CCB takes the decision outside the hospital, which gives it the benefit of perception. That, I believe, makes it the preferable option.

PAS Opponent's "Flawed Rationale"

In a letter to the editor published in the Boston Globe on March 19, Robert Joyce of Newton responded to a Globe obituary of Dr. Peter Goodwin, who not only championed the Death With Dignity movement, but used that Oregon law to die on his own terms at age 83. 

In his letter, Joyce cited hospitalized patients’ need for an advocate. And on that point, Kathy Kaditz, a member of the Community Ethics Committee, which is responsible for this blog, agrees with him.

But Kaditz takes issue with much of the rest of Joyce’s letter. She writes:

Though his client’s case is not detailed, in my experience hospitals try to honor the “goals of care” as stated by a patient or their proxy. However, hospitals recognize disputes do arise and communication does break down.  Many hospitals are addressing this through the creation of a position called a “ hospitalist” whose job is to work with a patient or their surrogate to determine the patient’s “goals of care,” then to monitor and coordinate implementation of those goals during the patient’s hospital stay.

However, the referendum on the November ballot (called the Death With Dignity Act), allowing a physician to prescribe a lethal dose of medication to a terminally ill patient, is very different from the case Attorney Joyce cites, which he summarizes as a dispute between his client and hospital staff over the staff’s recommendation to withdraw the patient’s dialysis treatment. I believe his rationale is flawed. The Death With Dignity Statute by its expressed terms is completely voluntary. It can only be patient initiated.

The goal of the statute is to expand the choices for terminally ill patients who wish to have the option of controlling the time and manner of their death. The statute’s protections are limited to people who request a lethal prescription, are diagnosed to be within six months of dying and are determined to be mentally competent by their physician or a mental health professional. They must be able to voluntarily take the medication without assistance. The Death With Dignity Statute allows a person who meets these criteria to request a lethal prescription from their physician – a prescription which  the patient may or may not choose to fill or to use. Research in Oregon, which has a similar statute, has indicated that many terminally ill patients, after obtaining a prescription, feel a sense of control that reduces their suffering to the point they elect not to use it. It should be noted that the statute, by definition, excludes people with Alzheimer’s disease or ALS. There is room to debate whether the statute is too broad or too restrictive.

Finally, the vast majority of people express a wish to die at home.  In Oregon and Washington, where the Death With Dignity Statute is enacted, people choose to die at home. Physician involvement does not go beyond writing the prescription. I recommend Attorney Joyce review the proposed language of the statute before making misleading comparisons. A balanced documentary on this topic, How To Die in Oregon is available online, at no charge.

The Death With Dignity Act is clearly a significant piece of legislation that requires thoughtful deliberation. But let’s not start the conversation before the statute’s provisions are fully reviewed and understood. The misrepresentation of the statute through use of inflammatory examples and/or language inhibits a reasoned debate. This does a disservice to all residents of the Commonwealth, regardless of which side of this issue they stand.

The Community Ethics Committee for the Harvard Teaching Hospitals is currently studying the topic and plans to add to the community's understanding through publishing a report on physician assisted suicide later this spring and will encourage the conversation through this blog,

Kathleen Kaditz

Retired School Administrator

Secretary for Community Voices in Medical Ethics

Member of the Community Ethics Committee

Community Member, Ethics Advisory Committee, Spaulding Rehabilitation Hospital

Care, Choices & Cost

Another example of why Thaddeus Pope’s blog, www.medicalfutility.blogspot.com, is such a great resource. Be sure to read the comments.

In an article defending the  development of clinical practice guideline in a "private regulation regime," University of Texas law professor Ronen Avraham identifies 4 costs associated with overuse:

1. Defensive Medicine - excessive care that physicians provide in an effort to shield themselves from liability

2. Offensive Medicine - excessive care that physicians offer to maximize reimbursements

3. Cost-Apathetic Medicine - excessive care that physicians provide because they are trained to to everything for their patients and not pay close attention to costs

4. Compassionate Medicine -  excessive care that physicians provide, primarily at the end of life, because they cannot bear the thought of doing nothing

Where Should the Doctor Draw the Line?

Last night I joined a colleague in a conversation with medical students about medical futility, the relatively infrequent but damaging dispute between a patient or surrogate decision maker demanding treatment and a physician who believes it holds little or no therapeutic promise. 

This morning I read online a Wall Street Journal piece on the apparently growing practice among pediatricians of firing families that refuse vaccinations.

In the first case, the patient is demanding therapy against the physician’s best judgement. In the latter, the patient is refusing treatment against the physician’s best judgement.

Clearly, “the customer is always right” doesn’t apply to medical practice. But in a system that treasures patient autonomy, when is it appropriate for a physician either to deny an available treatment, or insist on one? When must a physician do so? 

Medical Research in the Rearview Mirror

What medical research being performed today -- and considered acceptable and ethical by contemporary standards -- will not fare so well in the opinion of future generations? 

This is the provocative question posed by the journal Nature in Hypocritical Oaths: History judges some research as unethical, despite approval at the time. 

The Nature essay comes in response to the revelation of tests conducted without consent on more than 5,000 Guatemalans, at least 1,300 of them infected with sexually transmitted diseases, as part of a U.S. Public Health Service research project from 1946-48.

At least 83 people died, and many others were gravely harmed by treatment so obviously barbaric by today’s standards. Victims included prisoners, soldiers, the mentally ill and commercial sex workers. 

Though the Guatemalan research was conducted at roughly the same time as the Nuremberg Trials --  which revealed research atrocities of Nazi Germany -- it did not come to light until 2010, revealed by the Obama administration (NOTE: correction in Comments) with a formal apology to the Central American country. 

The horrid story has led to recommendation of new rules to protect volunteers in human-subject experiments, and the Obama administration has allocated funds to fight sexually transmitted diseases in Guatemala.

In a recent editorial, the Washington Post called the apology from the U.S. government insufficient and recommended that compensation should be paid to victims or their survivors. “It should not take a lawsuit to prompt the government to do the right thing,” the Post editorial said.

The CEC’s report for the Presidential Commission on Bioethical Issues, Advocacy for Research Participants, can be read here. 

Palliative Care Anyone?

Two bits and pieces converge - suggestions to make palliative care primary - when cancer is diagnosed and in place of current hospice programs.

ASCO suggests that in treating some cancers, palliative care should be made available immediately upon diagnosis.

In the same month, former hospice director Hunter Groninger, MD (now at NIH in the Pain and Palliative Care Service) suggests that home-based palliative care may be an alternative approach to the current Medicare-funded limited hospice benefit . He writes:

"A more radical approach might replace the hospice benefit with home-based palliative care, similar to the model studied by Richard Brumley and colleagues and described in the July 2007 Journal of the American Geriatrics Society. Patients with advanced congestive heart failure, cancer, or COPD were given symptom-focused interdisciplinary supportive care at home that was similar to home hospice care, but with important differences. Under the program, patients could participate if their expected life expectancy was less than twelve months, rather than six; they could continue receiving disease-modifying therapies; and the palliative care physician actively coordinated care among all of the doctors involved, to help diminish fragmented care. The results? This home-based palliative care intervention greatly reduced the costs of care, prevented hospitalizations and emergency department visits, and improved patients’ satisfaction."

Our current approach to end-of-life care is stymied by the lack of prognostic certainly -- we just don't know when someone is going to die and we don't provide palliative care services throughout an illness because no one knows if it's really the "last illness" or just one more illness along an excruciating long road to that last illness.

The current suggestions (providing palliative care immediately upon a cancer diagnosis and in place of the time-limited hospice benefit) are progressive, creative, and deserve a closer look

Life & Death: A Perfect Storm in 2012

I recently read about a Seattle hospital's merger into a company that followed the moral teachings of the Roman Catholic church in its policies, most notably with regard to life’s beginning and ending.

Along with Oregon, Washington is one of two states in the country where voters have sanctioned the legalization of physician-assisted suicide for the terminally ill, a sanction that couldn't be honored in a Catholic-run hospital. But can a hospital refuse treatment voters have approved?

A similar hospital merger in Louisville was stopped by Kentucky Governor Steve Beshear in late December over concerns that included restrictions in reproductive services. "In my opinion,” the governor said, “the risks to the public outweigh the potential benefits."

According to USA Today, in Troy, NY, a maternity ward was created, free from Catholic restrictions and separately licensed, on the second floor of a secular hospital taken over by a Catholic system. And to ease concerns about affiliating with a Catholic system, Swedish Medical Center in Seattle agreed to fund a Planned Parenthood office next door. 

“In the past few years, proposed mergers between Catholic and secular hospitals in Louisville, Ky., and Sierra Vista, Ariz., have collapsed in part because of concerns about the church's bans on abortions, in-vitro fertilizations and sterilizations,” USA Today reported recently.

San Francisco-based Catholic Healthcare West, its growth prospects compromised, is ending its Catholic affiliation and changing its name -- to Dignity Health, not to be confused with Dignity 2012, the organization promoting physician-assisted suicide in Massachusetts.

I recalled these scenarios this week as I read about the staunchly Catholic GOP candidate Rick Santorum’s primary night sweep; criticisms by Santorum, House Speaker (and Catholic) John Boehner and others of President Obama’s controversial new contraceptive policy; and the state Supreme Court declaring unconstitutional Georgia’s ban on advertising assisted suicide. (The practice of assisting in suicide isn’t actually illegal in the state, only the advertising of it.)

Throw in California's newly overturned Proposition 8, and the separation of church and state is becoming a perforated line at best, or perhaps a rift.

In the Georgia ruling, the court suggested the state could formally legalize assisted suicide, and perhaps that is what Georgia legislators will do (NOTE: See correction in attached Comments). Meanwhile, in Massachusetts (39 percent Catholic in 2008), the question of legalizing physician-assisted suicide will be put to the voters in November.

Life, death, faith and choice are in for a profound going-over this election year. 

Georgia Court Rules for Suicide Proponents

What comes next, now that the Georgia Supreme Court unanimously has sided with suicide proponents who said their free speech rights were violated by a state law criminalizing assisting in suicide?

Four members of the Final Exit Network will not stand trial on charges that they assisted in the death of a 58-year-old cancer patient. The Supreme Court's ruled that Georgia law violates free speech clauses of the U.S. and state constitutions. 

And yet Georgia doesn’t actually forbid assisted suicide, but since 1994 has banned publicly advertising it, apparently in response to concerns that the state might become known as an assisted-suicide destination. As such, Georgia law seems something of a don’t ask, don’t tell for assisted suicide.

The suicide at issue did not involve a physician’s prescription, but a tank of helium and an “exit hood.” The court said lawmakers could have banned all assisted suicides without restricting speech, or banned offers to assist in suicide that were followed by the act. 

"The State has failed to provide any explanation or evidence as to why public advertisement or offer to assist in an otherwise legal activity is sufficiently problematic to justify an intrusion on protected speech rights," the ruling said.

Physician-assisted suicide, which will be on the ballot in Massachusetts in November, already has voter approval and is practiced in Oregon and Washington, while the Montana Supreme Court has deemed it acceptable medical treatment. In Hawaii, a legislative effort to legalize the practice stalled last year, and the state attorney general recently said a physician assisting in a suicide “could be charged under Hawaii's manslaughter statute." 

Will Georgia lawmakers now specifically address the legality of assisted suicide? And does the Georgia ruling have any ramifications for Massachusetts? 

Read more: http://www.foxnews.com/us/2012/02/06/ga-court-overturns-assisted-suicide-restrictions-1677804893/#ixzz1ldSzck00

Care & Collaboration

I’ve got a bias. Whether I’m trying to understand disputes over medical futility or distinguish palliative sedation for the dying from assisted suicide, I’m drawn to the nurse’s perspective. No one works more closely with the patient’s best interests.

My bias is rooted in heavy reliance on nurses during my daughter’s life-threatening illness. My daughter was cured, I emerged relatively sane, and while physicians accomplished what was impossible in my own childhood, it was nurses who responded at the push of a button, won our confidence and trust, and held our hands on the long walk into the new normal: Brooke, Suzanne, Michael, Phaedra, the other Brooke. It’s a long list.

Now, in trying to comprehend medical futility for a Community Ethics Committee study, it breaks my heart to think of a nurse devoted to a patient’s best interests but trapped delivering harmful care to a dying patient on life support who may feel nothing except the agony of a dressing change on deteriorating skin. I’m unclear on what the CEC might say to help the situation, but I’m glad we’re trying.

I’ve also discovered that it’s much easier to say, “Stop putting off the end-of-life conversation,” than to understand the forces that put it off. That Americans don’t want to acknowledge mortality is part of the problem, as is a physician’s aversion to admitting defeat. but acknowledging the inevitable before the end is near is crucial to good medical care, isn’t it? So bringing palliative specialists into the dialogue long before curative or therapeutic options are spent makes a lot of sense.

After spending days reading and writing about Amanda Trujillo, the Phoenix nurse fired for somehow overstepping bounds in advocating for a dying patient, I’m now studying a transcript of the roundtable discussion “Palliative Care in the ICU”  in the Journal of Palliative Medicine. There’s much useful information in it, especially with regard to a more collaborative approach to medicine that would increase the influence of palliative care from the ER to the ICU.

The roundtable was organized by the IPAL Project, an initiative from the Center to Advance Palliative Care. IPAL stresses the importance of a unified team using ICU palliative care quality indicators and ensuring that the spiritual, emotional and communication needs of patients are addressed.

The roundtable was a remarkable gathering of leading palliative care lights, including Kathleen Puntillo, an RN and Doctor of Nursing Science in the Department of Physiological Nursing at UC San Francisco. She spoke insightfully about the nurse's role and responsibilities in palliative care, and about the cost of marginalizing palliative care to the dying process. 

“We still oftentimes maintain this very narrow focus that sees palliative care only as end-of-life care, and if the patient is not deemed to be at the end of life, then it is not time to call in palliative care services,” Puntillo said. “This narrow focus prevents patients and their families from getting the different types of palliative care that are available.

“I think there are great challenges in ICUs and for ICU patients if we are not at the point where we are saying this patient is imminently dying. We have this tension, if you will, between the patient's physiological instability and the need for symptom management. Indeed, many patients in ICUs suffer from many symptoms such as fatigue, thirst, anxiety, and pain, so they have a need for symptom assessment and management. But again, this need for interventions or thoughts of interventions for symptoms often gets waylaid by the concern that we are going to make patients physiologically unstable.”

A devotion to rescue leaves little space for considering or discussing other scenarios.

“In many surgical ICUs, depending on the specialty, the focus is on rescue.” said critical care surgeon Anne C. Mosenthal of New Jersey Medical School. “There is less willingness to acknowledge some patients may die, and that palliative care is necessary. ”

How, then, to make palliative part of the fabric of care, and not a last resort waiting for the “real” care to be exhausted? 

“Some of the ICU clinicians are very proud and protective of the work they are doing in the ICU and the challenge of having a consultative service come in can be quite difficult,” said licensed clinical social worker Colleen M. Mulkerin of Hartford Hospital. “Trying to support and integrate some of the palliative care concepts and practices into what the critical care teams are doing can be so valuable. With a little bit of support and education, we as palliative care specialists are able to improve the ability of the ICU team to do family meetings, to involve families on rounds, and develop better ways to integrate patients' values and preferences for care.”

A collaborative approach, in other words.

“Effective quality improvement requires an interdisciplinary team effort,” said Dr. J. Randall Curtis of Harborview Medical Center/University of Washington. “The team needs good interdisciplinary communication and collaboration. These teams require multiple disciplines working together as opposed to professions working in silos. Our health care system historically has been very hierarchical in its design, and one of the lessons of these quality improvement efforts is that we need to find ways to empower everybody on the team to address issues and problems that they see arising regardless of their discipline or profession.”

I’ve captured only some of the roundtable highlights here, and not all participants. The full transcript is not to be missed by anyone interested in improving EOL care.