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)