Do You Have a Question About Question 2?

If you could ask one question of legal, ethical and medical experts about a person’s wish to control when they die, what would it be? 

Here’s your chance. Massachusetts will vote in November on Question 2: Prescribing Medication to End Life, and to help voters think through the issues involved, a free, public forum will be held on October 25 in the amphitheater at Harvard Medical School’s Tosteson Building. 

Moderators will ask questions of an expert panel, but questions will come from the public.  

There are three ways for you to submit questions: 1) Simply click on “comment” below this story; 2) submit it via Twitter to @medethicsandme; or, 3) send an email via the link down the right-hand column of this page.

Thanks for participating in this important dialogue.

Grace & Anthony

Two recent New York Times stories provided very different looks into the complexity of decision-making at the end of life.

One is the ongoing story of a deeply religious family’s anguish over a dying adult daughter’s fate. Grace Lee has asked to be removed from life support and allowed to die, but her parents believe that tantamount to suicide, and a sin. The woman remains competent to make her own decisions, and after asking that life support be discontinued, she changed her mind.

“Clearly she was badgered into this position by her parents,” says the attorney for Grace Lee. “But in that context, what an incredible gift to give them at the end of her life."

By contrast, former Times editor Bill Keller recounts the death in England of his father-in-law, Anthony Gilbey, a fate that was accepted with humor and grace by the family, including the dying man himself, who replies to his physician’s terminal prognosis, “So, no more whoop-de-doo.”

Clearly, in the latter case, there was agreement that aggressive measures to prolong the dying process were not in the patient’s best interest. For Grace Lee, best interest is more complicated. When she asked that treatment be discontinued, the interest would seem to have been hers alone. But amid her family’s anguish, and stated hope for a miracle, her own best interests changed.

For more on now the Grace Lee story is being reported, see here and here.

In his final days, Anthony Gilbey was able to state his wishes. And Grace Lee remains able to answer questions with nods or shakes of her head. Too often, the patient is beyond reach, and the decisions are between physician and family members, with no real sense of what the patient would want.

The Gilbey and Lee stories also share this: In the telling, the role of the nurse is trivial or non-existent.

“Anthony Gilbey’s doctors concluded that it was pointless to prolong a life that was very near the end, and that had been increasingly consumed by pain, immobility, incontinence, depression and creeping dementia,” Keller writes. “The patient and his family concurred. And so the hospital unplugged his insulin and antibiotics, disconnected his intravenous nourishment and hydration, leaving only a drip to keep pain and nausea at bay. The earlier bustle of oxygen masks and thermometers and blood-pressure sleeves and pulse-taking ceased. Nurses wheeled him away from the wheezing, beeping machinery of intensive care to a quiet room to await his move to the other side.’”

But was it “the hospital” doing all that unplugging, disconnecting and bustling, or was it a nurse?

In stories about Grace Lee’s legal proceedings in various media, a search for the word “nurse” comes up empty.

Maybe this is understandable -- these are stories about medical decisions, which are the domain of the physicians, patients and families -- and, when they can’t work it out, the courts.

But the nurse’s role in such care is not to be overlooked. What must that feel like, to watch a patient wince or worse while you repeatedly perform procedures you know hold little or no therapeutic value? Nurses aren’t making the decisions, but it is their job to deal with the consequences -- in particular, to be meticulous about bed sores and dressing and tube changes, because over the weeks or months of life support, only such meticulous care will keep the pneumonia and infections at bay, and for only so long. Grace Lee called her care “unbearable”; the humans providing that care are the nurses.

In an ongoing study of medical care deemed futile by Community Voices in Medical Ethics, which hosts this blog through its Community Ethics Committee, we have heard two stories told in retrospect by parents about aggressive, prolonged care for children when “giving up” felt inhuman. Years after the deaths of these children, the two parents still carry regrets of the “if I knew then what I know now” sort.

One has come to believe the child wanted aggressive treatment to end long before it did.

The other has this memory: When the child died, after months of aggressive life-saving attempts, the nurse quit. This dedicated nurse had stuck with the family throughout their ordeal, even while others refused to participate. But when the child died, the nurse, burned out, got out. There was no next patient for her.

And that’s why I’m thinking about Anthony Gilbey’s and Grace Lee’s nurses. 

NOTE: Keller’s story provided an excellent insight into England’s Liverpool Care Pathway. 

VIDEO: Public Forum on Question 2

The web page for The Division of Medical Ethics at Harvard Medical School, which hosted the forum "Prescribing Medication to End Life," now features a video link to the forum.

The forum was held to help Massachusetts voters consider the ballot measure that would have legalized the practice alternately known as Death With Dignity and Physician Assisted Suicide. 

Moderated by Christine Mitchell and Dr. Robert Truog of the Division of Medical Ethics, the panel featured Drs. Marcia Angell and Lachlan Forrow, Boston Medical Center attorney Ellen Weinstein, and Carol Powers, attorney and president of Community Voices in Medical Ethics. 

The ballot measure was narrowly defeated by voters on November 6.

How Will You Vote on Question 2?

Come Election Day, Question 2 offers Massachusetts voters just two possible answers: yes or no. But the questions are countless, and how you answer may depend on asking the right ones -- and the language you use to describe what is being proposed.

The state calls it Prescribing Medication to End Life. Opponents and proponents have other names for it, and it's easy to see why. "Do you believe in Death With Dignity?" is not the same question as "Do you believe in Physician-Assisted Suicide?" And whether you consider the law as proposed to voters to allow for a dignified death or a suicide perhaps is determinant of whether you support it or oppose it.

The nonprofit Community Voices in Medical Ethics is interested in helping Massachusetts voters to think this through, with three papers documenting its study of the issue, and with a forum on October 25 featuring an extraordinary panel with clear understanding of the positive and negative aspects of the ballot measure.

The forum, free and open to the public, will be held October 25, 4 to 6 pm, in the amphitheater at Harvard's  Tosteston Medical Education Center, 260 Longwood, It will be moderated by Christine Mitchell, RN, and Robert Truog, MD, both of the HMS Division of Medical Ethics. RSVP to DME@HMS.harvard.edu

 

The panel will feature Lachlan Forrow, MD, director of both the ethics and palliative care programs at Beth Israel Deaconess Medical Center, and chair of the Massachusetts Expert Panel on End of Life Care, whose extensive report to the governor has called in particular for integrated palliative care and support for the MOLST advance directives program; Marcia Angell, MD, former editor of the New England Journal of Medicine and one of the leaders and signers of the Death With Dignity Initiative that put Question 2 on the ballot; and Ellen Weinstein, assistant general counsel at Boston Medical Center.

The panel also will include Community Voices president Carol Powers, an attorney, founding co-chair of the Community Ethics Committee, and primary author of the White Paper and Executive Summary.

Community Voices, which is responsible for this blog and affiliated with the Community Ethics Committee, has yet another term for the practice that is being put to a vote: Choosing Medically Induced Death. Including "choice" was considered important, even vital, in coming to terms with this change in the traditional healing role of the physician.

For the record, Community Voices has included both proponents and opponents, before, during and after our study that took in assisted dying as practiced legally in Oregon and Washington; voluntary euthanasia as practiced in Switzerland; and the current legal/parliamentary engagement of voluntary euthanasia in Canada, especially British Columbia.

The central question is this: Should physicians in Massachusetts be given the legal authority to prescribe a lethal dose of medicine to a competent adult who is terminally ill, physically able to self-administer, and wishes to end his or her life? 

Our lengthy White Paper, abbreviated Executive Summary, and Conversation Guide are meant to help you answer this question wisely. And the October 25 forum, with its panel of experts, is not to be missed.

Death With Dignity: A Community-Based Conversation

Herman Blumberg, rabbi and founding member of the Community Ethics Committee, has written and compiled a guide to help Massachusetts voters consider all aspects of Question 2 on the November ballot.

Question 2 concerns what is alternately known as Physician-Assisted Suicide or Death With Dignity and will ask voters whether the commonwealth should make it legal for physicians to prescribe a lethal dose to terminally ill patients who are mentally competent to choose and physically able to self administer.

The guide includes language from Question 2 (Prescribing Medicine to End Life) as well as excerpted dialogue from the Community Ethics Committee's White Paper on the subject.

For the Conversational Guide, click here.
For the full White Paper, click here. 
For an Executive Summary, click here. 

Does Massachusetts Need a “Best Interests” Panel?

With Election Day approaching, and Massachusetts due to vote on the Death With Dignity Act, apparent physician opposition remains a stumbling block. And yet, in their essay “Redefining Physicians’ Role in Assisted Dying (New England Journal of Medicine July 12, 2012), authors Julian Prokopetz and Dr. Lisa Soleymani Lehmann state that among citizens “momentum is building for assisted dying.”

That said, “some physicians believe it’s inappropriate or wrong for a physician to play an active role in ending a patient’s life,” they write.

Their solution is to remove “physician-assisted” from assisted dying. Instead, an independent state or federal “mechanism” would be created “to confirm the authenticity and eligibility of patients’ requests, dispense medication, and monitor demand and use.” 

As someone who can justify the practice of Death With Dignity/Assisted Suicide (see our White Paper: Choosing Medically Induced Death, but is wary of such a radical change to the healing nature of what physicians do, I’m drawn to the idea of legalizing the practice but removing the physician from the ultimate decision and dispensation of the lethal dose.

What would such a governmental “mechanism” look like? Would it be used exclusively for terminal patients wanting to end their lives? Or would it have a broader charge, perhaps resolving intractable medical disputes, and advocating for unbefriended patients.

There are models for this type of panel. 

In Ontario, Canada, the Consent & Capacity Board is used to resolve questions of mental health and competence, informed consent, and substitute decision-makers. It conducts hearings related to the province’s Mental Health Act, Health Care Consent Act, Personal Health Information Protection Act, the Substitute Decisions Act and Mandatory Blood Testing Act. Members consist of psychiatrists, lawyers and other citizens, appointed by the lieutenant governor.

The CCB, in resolving intractable disputes between the medical team and surrogate decision-makers, has a good reputation for serving the patient’s best interests.

In New York State, a Surrogate Decision-Making Committee has a more specific purpose. It serves to advocate for mentally disabled patients who cannot speak for themselves, and so cannot give informed consent for medical treatment.

Texas, under its Advance Directives Act, also seems to handle intractable disputes efficiently and as well as possible in considering the life-and-death circumstances. But TADA carries the taint of keeping the decision, not only out of the courts, but inside the hospital. 

Like Ontario’s CCB, New York’s SDMC is an alternative to the court system, which is ill equipped to deal decisively and expeditiously in such cases. The SDMC serves persons with mental disabilities who are or have been residents of a state program and have neither decision-making capacity nor a legally authorized surrogate decision-maker.

Such “unbefriended” patients are increasing in number -- in Massachusetts, as well.

“These patients have neither decision-making capacity nor a reasonably available surrogate to make healthcare decisions on their behalf,” according to Thaddeus Pope, the medical futility legal expert, and Hamline University colleague Tanya Sellers. “This topic has been the subject of recent articles in (Journal of Clinical Ethics).It has been the subject of major policy reports. Indeed, caring for the unbefriended has even been described as the ‘single greatest category of problems’ encountered in bioethics consultation. Moreover, the scope of the problem continues to expand, especially with rapid growth in the elderly population and with an increased prevalence of dementia.”

Does Massachusetts need such a “mechanism”? Were a panel created to decide cases of assisted dying in Massachusetts, what else should it be responsible for?

“Such a mechanism would make it essential to offer high-quality palliative care,” say the authors of the NEJM essay. “The availability of assisted suicide in Oregon seems to have galvanized efforts to ensure that it is truly a last resort, and the same should hold true regardless of who writes the prescription. Usual care for terminally ill patients should include a discussion of life-preserving and palliative options so that all patients receive care consistent with their own vision of a good death.” 

Politics & the Meaning of Intent

The prime minister of New Zealand equates aggressive pain treatment for the terminally ill with euthanasia. Is he correct?

He also says euthanasia, currently illegal in New Zealand, is a common practice in hospitals there. The relative truth in that statement probably depends whether one agrees with him that euthanasia and palliative sedation are essentially the same thing.

But they are not. The New Zealand palliative care community calls the prime minister’s comments "misguided," and I agree.

The ethics of care at the end of life is central to much of the work of the Community Ethics Committee of Boston. As a member, I recently participated in the study of the Death With Dignity Act, on the Massachusetts ballot in November (see our White Paper and Executive Summary). This, in part, is why I was drawn to the story out of New Zealand.

Earlier, we produced a report about the practice we came to know as Continuous Deep Sedation as Comfort Care Until  Death -- in other words, palliative sedation for the imminently terminal. But we went with the longer title in part because we wanted to be as clear as possible about what we were endorsing.

And we did endorse. In calling Continuous Deep Sedation not only ethical, but an important treatment option in compassionate care for the dying, we felt it important to clearly understand distinctions among the end-of-life practices.

Relatively speaking (and by comparison with the Death With Dignity study), it was easy for us to come to consensus in support of Continuous Deep Sedation. For me, crucial to endorsing CDS was this fact: while CDS can hasten death for a terminal patient, it also can have the opposite effect. That is, the control of intractable pain in some cases allows the patient's organs to resume function, and actually prolong life. With CDS, the intent is to treat pain, and the cause of death truly is the underlying illness, not the treatment.

Were CDS the same as euthanasia, this would not be true. The euthanized patient dies from the treatment. Death is the point. It is the intended outcome.

John Key, the New Zealand prime minister, doesn't make this distinction. The New Zealand Herald reports that Key, a supporter of legalizing euthanasia in New Zealand, said if he was hospitalized, terminally ill and in pain, "if they just effectively wanted to off the switch and legalise that by legalising euthanasia, I'd want that. I look at a situation where I think there's a lot of euthanasia that effectively happens in our hospitals."

Palliative care is misunderstood by many to be exclusively end-of-life care, and ghettoized into the second half of a sentence that begins, "There's nothing more we can do ..." And yet studies show palliative care to both extend life and improve quality of life. And so the prime minister's comments indicate a self-serving opinion that does harm to compassionate care for the terminally ill and others.

"His personal opinion given as Prime Minister has serious negative consequences in the trust people have in hospital care of the seriously ill," Sinead Donnelly, New Zealand chairwoman of the Australian and New Zealand Society of Palliative Medicine, told the New Zealand Herald.

Donnelly distinguished euthanasia from a patient's right to refuse treatment or hastening death as an unintended consequence. She said the society agreed with the country’s medical association that doctor-assisted suicide and euthanasia are unethical -- and would be regardless of a change in legality.

Hospice NZ Medical Adviser Sandy MacLeod said stopping treatment that was no longer effective was not euthanasia, and conversely that prolonging such treatment could increase suffering and distress.

"It appears the prime minister has confused the ceasing of curative treatments with ending a person's life,” MacLeod said. “In situations like this people are in fact dying from an advanced disease, not from the withdrawal of the treatment."

NOTE: Through research for this blog, I've discovered a number of impressive reporters internationally covering end of life issues. Add to that list Claire Trevett of the New Zealand Herald.

Patience With the Almighty

How long must physicians wait for a miracle? Can a secular belief in doing no harm be used to justify discontinuing life-sustaining measures for a dying person against stated, faith-based wishes?

I’m wondering this while reading about a study in the Journal of Medical Ethics that asks the question, “Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children?”

The authors (Joe Brierley,  Jim Linthicum and Andy Petros) all are affiliated with Great Ormond Street Hospital for Children in London, England.

In a summary of the article, they write: “Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families and for some staff. However, religious claims used by families to challenge cessation of aggressive therapies considered futile and burdensome by a wide range of medical and lay people can cause considerable problems and be very difficult to resolve. 

“While it is vital to support families in such difficult times, we are increasingly concerned that deeply held belief in religion can lead to children being potentially subjected to burdensome care in expectation of ‘miraculous’ intervention.

“We reviewed cases involving end-of-life decisions over a 3-year period. In 186 of 203 cases in which withdrawal or limitation of invasive therapy was recommended, agreement was achieved. However, in the 17 remaining cases extended discussions with medical teams and local support mechanisms did not lead to resolution.

“Of these cases, 11 (65%) involved explicit religious claims that intensive care should not be stopped due to expectation of divine intervention and complete cure together with conviction that overly pessimistic medical predictions were wrong. 

“The distribution of the religions included Protestant, Muslim, Jewish and Roman Catholic groups. Five of the 11 cases were resolved after meeting religious community leaders; one child had intensive care withdrawn following a High Court order, and in the remaining five, all Christian, no resolution was possible due to expressed expectations that a ‘miracle’ would happen.”

(Thanks to medicalfutility.blogspot.com for the tip to this study)

Does That Come With Fries?

Atul Gawande has seen medicine's future and its name is, uh, the Cheesecake Factory?

Indeed, the restaurant chain is where Gawande finds his model for the "best prospect for change."

From Gawande’s story “Big Med” in the August 13&20 New Yorker:

“Those of us who work in the health-care chains will have to contend with new protocols and technology rollouts every six months, supervisors and project managers, and detailed metrics on our performance. Patients won’t just look for the best specialist anymore; they’ll look for the best system. Nurses and doctors will have to get used to delivering care in which our own convenience counts for less and the patients’ experience counts for more. We’ll also have to figure out how to reward people for taking the time and expense to teach the next generations of clinicians. All this will be an enormous upheaval, but it’s long overdue, and many people recognize that.” 

Read more http://www.newyorker.com/reporting/2012/08/13/120813fa_fact_gawande#ixzz23htqApdo

Also, Gawande participates in a live chat on Big Medicine at noon today: 

http://www.newyorker.com/online/blogs/ask/2012/08/live-chat-atul-gawande-on-big-medicine.html

Tattoos, Hospice Nurses & Competing Wolves

I’m just discovering the blog at hospicediary.org, written by Amy Getter, a hospice nurse in Seattle. I was drawn to it by her Twitter exchange with physician Alex Smith following his blog post at GeriPal.org.

Smith writes about people getting DNR chest tattoos -- to make as unmistakable as possible their wishes against resuscitation measures. The advance directive could not be clearer, it would seem, or more certain to accompany the person, than when indelibly imprinted upon one’s chest.

In response, Getter tweeted: “I know a woman who attempted suicide and wrote no code on her chest, she was resuscitated anyway when found. Who decides?” 

“Who decides?” is a timely question, in light of recent consideration in JAMA and elsewhere of whether CPR, so rarely successful and so often brutal, should cease to be automatic.

Hospice nurses have a unique perspective into contemporary quandaries in end of life care, and so I was glad to discover her blog. Getter blogs insightfully and compassionately about the realities of caring for the dying at hospicediary.org.

I was rewarded with this gem:

An old Cherokee, teaching his grandson about life, said: "A fight is going on inside me, It is a terrible fight and it is between two wolves. One is evil -- he is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority and ego. The other is good -- he is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith. The same fight is going on inside you and inside every other person too.”

The grandson asked in reply: “Which of the two wolves will win?"

The grandfather answered: "The one you feed."

Overpaying for your hospital stay? Ask questions and get help!

Readers Digest has a special report in the current issue on "Why a Hospital Bill Costs What it Costs."  Kimberly Hiss points out many ways to save money on your health care bills, most of which follow a theme:  Ask Questions -- ask up front, ask about alternatives.

Can I have this done at a surgery center vs. a hospital?

Also, keep track of time actually in surgery. OR's can cost $200/minute, so if your spouse knows you were there for one hour, and the bill comes in for two, you should dispute that bill and save thousands.

Help can be available from many sources:

• http://www.healthcare.gov/law/features/rights/consumer-assistance-program 
• in your state http://www.healthcare.gov/using-insurance/managing/consumer-help/index.html
• billadvocates.com helps patients deal with overcharges
• http://patientadvocate.org/ supports people with chronic, life-threatening, or debilitating illness
• advocacyforpatients.org chronic conditions

You, too, can be an informed consumer of health care.

The Racial Divide & Informed Decision-Making

Dr. Joseph Sacco’s piece in the August 7 NY Times Science section makes about as good a case as any I’ve seen or heard that palliative care specialists are almost uniquely qualified to engage the most complex conversations on pain and end-of-life care.

Sacco writes of research findings that "upend the conventional view of preferences for care among blacks. ... What made the difference? Providing patients and their families useful information in plain English, with compassion and clarity, enabling them to make choices in keeping with their desires and beliefs.”

See the full story, a keeper for those passionate about disenfranchised communities and the end-of-life dialogue, here.

The Virtue of Patience With Patients

What do you call a doctor who for decades cares for the destitute, demoralized and demented, patients who often care little for themselves, in a medical anachronism fast giving way to politics and bean counting? You might call her blessed. She probably would.

Welcome to God’s Hotel, Victoria Sweet's loving and powerful story of a San Francisco hospital  where whisky bottles litter the grounds, patients smoke in the halls, "Bad Girls and Bad Boys" find private corners to do private things, and one nurse's shift consists pretty much of knitting blankets. (Don’t underestimate knitting. Sweet doesn’t.)

The list is long of perfectly sound reasons for a mayor or federal department to step in and change the way things are done at Laguna Honda. That they do so, as Sweet eloquently writes in a manner more insightful than wistful, is truly sad.

I was drawn to this book for its combination of medicine and religious faith, and by Sweet's apparent ability to practice both without compromise or apology.

If aspects of the hero archetype apply,  it is fitting. Medicine was a redirection for Sweet, initially drawn toward psychology by Carl Jung, and she can seem a healer from another time -- which, AIDS patients and MRIs notwithstanding, she sort of is. While practicing medicine at Laguna Honda at the close of the 20th Century and start of the 21st, Sweet worked on a doctorate in medical history, with a particular emphasis on the 12th Century nun Hildegard of Bingen. Hildegard was a poet and writer of liturgical music. She was also a mystic, a botanist, an influential theologian and a medical practitioner.

Hildegard is no med school icon, and maybe that's as it should be. And yet Sweet places Hildegard within the historic sweep of medicine's evolution, and shines a particularly bright light on the role of time in healing. Along the way, she comes to question accepted contemporary thinking about the doctor-patient relationship.

"I'd accepted the teaching that a good doctor does not get too close to his patient," Sweet writes. "He or she does not jump into the mix, but keeps some distance, watches for the 'counter-transference,' but does not get drawn in. There is much truth in that wisdom passed down by generations of doctors. The Hippocratic physician does not fall in love with his patients, or in hate either. He keeps their secrets no matter how heinous; he does not have dinner with his patients, or buy them presents. He remains 'other' to their lives, their families, their neuroses. It is a good ground rule. For a patient to turn to someone kind but distant, caring but calm, wise but not attached, is important, is necessary. But it requires that the doctor maintain a certain distance, and this means not quite being yourself. ... and it was not something I wanted to give up any longer. I didn't want to reestablish distance; I didn't want to be a Hippocratic physician; with my patients, I wanted to be myself. Whether that was possible for a doctor, I didn't yet know."

Along this path of discovery, time, good food and joy become as important to Sweet's philosophy of healing as any diagnostic tool at her disposal. In comparing then and now -- the centuries of premodern medicine little more than a curiosity in the scientific and technological present -- Sweet seems intent on finding the baby that has been thrown out with the bath water.

Sweet is endlessly forgiving of her patients, and knows them and loves them deeply. Only such a person could perceive a place such as as Laguna Honda in San Francisco, what might have been America's last almshouse, with the affection Sweet shows.

Catholic enough to follow the footsteps in pilgrimmage of a 12th Century nun/healer, Sweet also is Zen enough to sit in the dark with a perplexing patient, agitated and agonized, see this person acting as if poisoned, and find a diagnosis in the act of sitting “like a mental state of knitting.” What had seemed an inexplicable symptom of dementia was in fact a toxic reaction to a cocktail of medications.

Sweet begins regularly to sit with patients, "and something, somehow, would happen. It would become clear what, if anything, was wrong with the patient and what, if anything, I could do about it."

Pain comes in great variety, from the physical to the existential, and Sweet strives to understand and distinguish them. This is a valuable skill, especially with a patient no longer able to communicate what’s wrong in any way but physically.

"The demented men of E6 gave me pause,” Sweet writes. “They weren't all there, and they weren't all not there either. They were demented, but not de-souled or de-spirited. ... I learned a lot about sensibility, feeling and will from those demented men of E6.”

And, she writes, “I wondered how many of those I called Bad Boys and Bad Girls were, in reality, spiritually thirsty and spiritually sick. Perhaps they were the most sensitive, the most easily hurt of all my patients, the most tortured by the human fate of knowing we are going to die."

So forgiving is Sweet that Miss Lester, a nurse as disdainful and distrustful of doctors as she is devoted to her patients, is portrayed as a lost treasure.

"Miss Lester was right to be suspicious of the medical profession,” Sweet writes and reflects on medicine’s centuries-old power struggles. “Ever since the duties of the monk infirmarian had been split between doctor and nurse, and the Latin curare split into cure and care, there'd been a battle going on for control. Who would be in command of the hospital? Doctor or nurse? Whose model  of curare would triumph? Cure or care? And this battle was joined at the French Revolution, when the doctors tried to wrest control of the Hotel-Dieu in Paris from its nursing nuns.”

At Laguna Honda, patients often are victims of their own behavior, and Sweet doesn't sugar-coat this. The patience they require is that of, well, a saint.

Over time, Sweet watches her profession transition from physician to health-care provider. GIven a tour of the new Laguna Honda building, she asks where is the doctors' office? There seems to have been an oversight, and the cost-containment strategy bans new patients but keeps the mayor's PR consultants on the payroll.

Sweet values efficiency, if not in hospital administration, then in her prose. She is a wonderful story teller and gifted at human insight, a nice skill in a writer, even better in a physician.

God's Hotel left me wondering whether an MRI would have shown Dr. Sweet anything more than she learned sitting quietly in the dark with a writhing patient. I wondered, too, whether a caring society can afford NOT to pay a nurse to sit, watch and knit.

And as efficiency came to seem, not a cure, but a disease, I was left with this sad impression:  In caring for the poor and sickly, this apparently isn’t a good time.

"God's Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine," by Victoria Sweet (Riverhead; $27.95).

(This blog post published originally at paulcmclean.wordpress.com)

Who gets what?

I've been thinking about the larger “medical futility” project to which we will soon be returning, and came across Kenneth Feinberg's book on "Who Gets What - Fair Compensation after Tragedy and Financial Upheaval".   Feinberg administered the Agent Orange settlement for Vietnam vets, 9/11 distribution, Gulf oil spill compensation, as well as TARP payments to bailout executives, along with VaTech victims.  So he has a lot of experience with allocating money, all the time under pressure from many sides.  the only thing he could be sure of is that no solution would make everyone happy.   Sometimes tort law and legislated rules tied his hands, and sometimes public expectations / pressure/ politics / public outrage were as important factors as the other factors.

I quickly read through looking for how Feinberg’s insights into who gets what, can help us with the cost aspect of medical futility: who should get what care?

The one aspect of all his deliberations that stood out to me is this:  all his dealings were public, and everyone knew what everybody else was getting.   "People will always count other people's money"

The major difference in health care cost, seems to be the complete opacity of costs -- the general public has simply no idea where the money comes from, and to what destinations it goes.   With health plan co-pays in the $20 range, and emergency room visits at $50, the REAL cost of care -- an xray, medicine, treatments, never mind hospital stays, is completely invisible to most of us.  Those in the businesses dealing with medical billing codes are much more aware, at a transaction level, but they don’t see where the river of money really flows among institutions (government, insurance, hospitals and health plans, taxpayers, caregivers, pharmaceutical, and on and on).

At the lowest transaction level, perhaps many of us would be outraged that the xray that costs $100 in a local clinic runs $2000 in some institution -- who's to know?   Maybe it is $10,000.  Nobody posts prices.  I liken this to going to the gas station without a price sign outside, telling the attendant "fill it up with super!", and perhaps charging $50/gallon gas to my "travel credit card" (I’m not paying, “insurance” is).    If I had any idea the price was $50/gal, I'd drive right past the place.  My point is, most of us don’t know even if it is billed out at $500/gal.   

It seems clear that one important factor in addressing cost, is a high level of transparency that is reflective of Feinberg's balance between stinginess and generousity:  who gets what ?   Do we feel that physicians or surgeons deserve what they are paid (do you know your doctor’s income? how about your health plan administrator)?  it's already clear that good, conscientious nursing assistants are underpaid for what they do.   How can we make up our minds whether it's ethical or supportable (or even forgiveable),  if we don't even know who is getting what ?   THAT's the first thing that's broken about the cost of healthcare: it's completely opaque black box.

If we are to make an ethical determination relating to the cost of health care, (is it just? is it ethical?), one of the essential changes is the transparency of costs: how much does it cost, and where does it go? The cost factor in medical futility, is a piece of this larger societal issue and cannot be separated.

Some other aspects of the “cost” topic might include these other related threads:

Another member of the committee points to the inelasticity of price vs demand/supply in healthcare: right now there is a glut of lobsters in the market: $3.99/lb because the supply is huge.  When the supply dries up next year, prices will be back to $9, $12, $14/lb.  Prices in healthcare related transactions don’t move like that, so those costs don't respond to normal market changes.  

There is also the matter of immediacy:  If you need that appendectomy, you're not likely to quibble on price or shop around.   

Another non-market feature of many healthcare costs seems to be a large gap between the price of a drug or service, and the incremental cost of delivering it (what does it really cost to manufacture one more pill?  trivial!  yet the price doesn't drop no matter what else happens...).   

Finally,  how do we (our society) want to deal with "free riders" ?  Hospitals in border towns that are inundated with patients from neighboring states who are not turned away, but also don't have insurance to pay for their treatments.  Supporting free riders in many parts of the industry, is completely unsustainable.   I'm not suggesting denying services to people who obviously need it, but free riding is a key factor in dealing with the cost of healthcare in general, and more narrowly in medical futility context in particular.   Who is getting what health care for free? Don't fool yourself: "the rest of us" end up paying.

The above are personal observations.

Facts, Fears & Protections of Conscience

A friend  excitedly calls to say that not only does the Affordable Care Act have a section related to physician involvement in, as my friend put it, "death facilitating," but it supports euthanasia and mercy killing.

It's the slippery slope, my friend seems to be saying, written into law.

A few minutes later he calls back, sheepish, and like a latter day Emily Litella, says, "Never mind." He'd reread ACA's Section 1553, and it doesn't say what he thought it said.

The ACA does include policy regarding the practice alternately known as Death With Dignity or Physician-Assisted Suicide. Section 1553 even goes a step further, to include euthanasia and mercy killing.

But the law hardly promotes the practice, and in fact is written as protection against discrimination for physicians who refuse to assist a patient in this way. The ACA gives physicians in Oregon, Washington, Montana and, perhaps next, in Massachusetts, federal backing for having nothing to do with a practice the Community Ethics Committee calls Choosing Medically Induced Death.

The good news for my friend and I is, we caught the mistake and both came away better understanding what the law actually says. Given the nature of the political dialogue regarding ACA, aka "Obamacare," clarity isn't always easy to come by.

The truth of Section 1553 is just as interesting to me: that protection from an assisted suicide law was seen as necessary -- that doctors, nurses and hospitals might need cover, under the Death With Dignity Initiative, when they say no for moral, ethical or other reasons.

Under Subtitle G/Miscellaneous Provisions, ACA's Section 1553 protects physicians, health care professionals and hospitals, et al., from discrimination for refusing to participate in "assisted suicide, euthanasia, or mercy killing." Complaints of discrimination are handled by the Office for Civil Rights in the Department of Health and Human Services.

This type of clause has a name: provider refusal clause, or conscience clause. It also has a history, which I learned about in a blog post by Ann Neumann, a writer (www.otherspoon.blogspot.com), hospice volunteer and editor of TheRevealer.org, a publication of the Center for Religion and Media at New York University.

Such clauses began in 1973, according to Neumann --  in response to the legalization of abortion. "What were once 'protection' of doctors from performing medical services they morally or religiously objected to morphed into 'protection' of entire institutions, like the Catholic church, which is the second largest provider of health care in the U.S.," Neumann wrote.

I hadn't read Neumann's blog in a while, and am glad to rediscover it. She's a wonderful writer, and an astute observer of the volatile intersection of religion and medicine.

Of the conscience clause and its expanding implications for a religion's influence on medical practice, especially for marginalized individuals, Neumann wrote: "Backlash to Roe v. Wade has expanded these federal laws ... to include increased rights of doctors at the detriment of rights for patients. Some do not require referrals — a doctor is not required to give a woman, gay or elder patient a meaningful referral for services — or informed consent — a doctor is not required to tell a woman, gay, or elder patient all of their medical options."

It is interesting that ACA anticipated states going beyond permitting physicians to write lethal prescriptions by including specific language about euthanasia and mercy killing -- as recently occurred via judicial ruling in British Columbia. 

It is also interesting, and maybe ironic, that while the Death With Dignity Initiative in Massachusetts is written to shield physicians from legal repercussions -- going so far as to state that the official cause of death would be attributed to the underlying terminal disease, and not to the lethal dose -- refusing to participate requires a legal protection all its own.