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.

A Community's Perspectives on Assisted Dying

Voters in the Commonwealth of Massachusetts will decide in November whether to legalize the practice alternately referred to as Death With Dignity or Physician Assisted Suicide.

The practice, which gives physicians the legal authority to prescribe lethal doses to competent and otherwise qualified terminal patients, already is the law, by will of voters, in Oregon and Washington state.

The Community Ethics Committee hopes to encourage and inform dialogue among Massachusetts voters with its white paper on the subject, "Choosing Medically Induced Death."


You'll find this report in the box on this blog's home page, under Publications of the CEC. Or, click here.


The title reflects the CEC's attempt to give the practice a description that transcends both the charged term suicide and what some see as the euphemistic Death With Dignity.

We hope to post a summary of this rather lengthy white paper in the near future.

The Language of Ending Life

Art, like morality, consists of drawing the line somewhere.

(G.K. Chesterton)

Andre Picard of The Globe and Mail is one hell of a writer. In a piece considering a British Columbia court’s approval of medical assistance in dying, and the complexities of the language surrounding the issue, Picard wonders just what was decided.

This much seems clear: The court granted to Gloria Taylor, a woman who suffers from ALS, or Lou Gehrig’s disease, the unique, for now, right to end her life at the time of her choosing with the physical assistance of a physician. Meanwhile, the Canadian Supreme Court sometime soon will resolve the case in Ontario of Hassan Rasouli, a minimally conscious man on life support caught in a wrenching moral/ethical quandary in the space between hastening death and prolonging dying. The country to the north is engaging the end-of-life debate in ways that promise illumination.

So what, Picard asks, should the right earned by Gloria Taylor be called?

“Physician-assisted suicide? Physician-enabled death? Physician-hastened death? Euthanasia? Voluntary euthanasia? Rational suicide? Suicide? Mercy killing? State-sanctioned murder? Death with dignity? And there are many more variations, each loaded with legal and moral baggage. The language we choose tends to reflect where we stand on the underlying question of whether grievously and irremediably ill people should have the right to choose to end their lives rather than let an illness take its course.”

Picard’s attempt at divining a fair and accurate term mirrors in many ways the recent struggle by the Community Ethics Committeee in Boston. With the likelihood that Death With Dignity Initiative will be on the Massachusetts ballot in November, the CEC studied and debated the question for months (in the process delaying a report on “medical futility/intractable disputes,” yet another extreme test of language and understanding). In this dicey negotiation of the line between church and state, with respect for democratic process and the values of life and choice, language emerged as central, perhaps determinant, to deciding the appropriateness of the practice.

Among CEC members, there were proponents of the term“death with dignity”; there were proponents (including myself) of “physician-assisted suicide.” We achieved consensus on neither, but settled on “choosing medically induced death.” This, we found, focused attention on two important aspects: autonomous choice and the physician’s role in providing the prescription for the lethal dose. And though as a phrase it won’t roll off anyone’s tongue, or supplant strong attachments to the better-known competition, “choosing medically induced death” most clearly addressed the CEC’s task at hand.

Calling the act of killing oneself something other than suicide can seem euphemistic and unhelpful in understanding what is taking place. And yet Picard makes a strong point, in clear and simple language, when he says “calling medically assisted dying suicide is a lot like calling surgery a knife attack.” Killing the patient is never the purpose of legitimate surgery, but suicide is without question a loaded term.

The right language is literally vital, and so difficult to agree on.

In an earlier CEC study -- of the use of palliative sedation in treating dying patients in intractable pain -- we agreed to make no real distinction among physical, emotional or spiritual pain; pain is pain, we decided. We also became convinced that while deep sedation might in fact hasten death, it also with some frequency allowed organ function to resume and the patient to live longer than expected. The intent was to treat the pain, and causing death was uncertain. We made a distinction between palliative sedation for a terminal patient, and medically induced death.

Learning about Gloria Taylor’s medical and legal ordeal led me to another excellent piece of journalism, by Douglas Todd in the Vancouver Sun. Todd looks insightfully into Taylor’s story and the broader subject of assisted dying. I’ll post more about Todd’s story in a coming blog. (Watch Taylor speak about the decision here.)

The British Columbia ruling goes further than what is proposed for Massachusetts, where an affirmative majority vote of citizens in November 2012 would allow physicians to prescribe a lethal dose -- but not to administer it. The patient, with a prognosis of six months or less to live, would be required to administer the dose.

This with near certainty would leave out an ALS patient such as Gloria Taylor, who by the time she is in her last six months likely will be physically unable to self-administer the lethal dose. Under the British Columbia ruling, apparently, should Taylor take the option, her physician could fully participate.

When Palliative Intent Is Called Into Question

Palliative care and hospice are enormously valuable but widely misunderstood medical practices for patients at end of life.  Central to the misunderstanding is the role of pain medication in the time of death. Palliative physicians can see their care intentions called into question, as a recent study has shown.

In a survey of 663 hospice or palliative physicians, more than half had been accused by patient families or even colleagues of murder, euthanasia or killing within the past five years.

Twenty five of them were formally investigated by their hospital, the state medical board or attorney general. 

None were found guilty.

See the compelling story of one such physician,  the study, and why communication and meticulous note-taking are essential throughout the palliative care process, here.

And  here, see why the Community Ethics Committee found terminal sedation, the treatment most likely to get a palliative physician's intent called into question, to be an ethically justifiable practice. Indeed, the CEC found it to be an important option in the best interests of the patient.