No Longer Beneficial Treatment (NLBT)

At the Seattle Children's bioethics conference, Marcia Levetown made a good case for not using the term "non-beneficial treatment."  Many have used this instead of the far more controversial (and misleading) "futile treatment."  But Dr. Levetown suggests using "no longer beneficial treatment."  





After all, treatment are usually started with at least a hope that they will be beneficial.  It is only after the passage of some time that the lack of benefit becomes clear (or clearer or sufficiently clear).  I like this term and plan to use it.  I may abbreviate it as NLBT and use it instead of the LSMT (life sustaining medical treatment) that I usually use.

Tiny Babies, Large Questions: Ethical Issues in Prenatal and Neonatal Care

Seattle Children's annual pediatric bioethics conference was held last Friday and Saturday.  

Happily, as with prior years, the complete webcast is available for free.  Perhaps most relevant to this blog is Friday morning's program:

• Whatever Happened to Baby Doe? The Transformation from Undertreatment to Overtreatment, Norman Fost, MD, MPH


• Neonatal Resuscitation: What Makes the Gray Zone Gray?, John Lantos, MD


• Whose Best Interest? Resuscitation Decisions for Neonates,Annie Janvier, MD, PhD


• When the Beginning Is the End: Ethical and Practical Issues in Neonatal End-of-Life Care, Marcia Levetown, MD


• Panel and questions: Norman Fost, John Lantos, Marcia Levetown, Annie Janvier, David Loren, Mark Mercurio

Canada's Parliamentary Committee on Palliative and Compassionate Care

Last month, I blogged about Canada's new Parliamentary Committee on Palliative and Compassionate Care. PCPCC is an ad-hoc Committee of the House of Commons dedicated to promoting awareness of, fostering substantive research and constructive dialogue on palliative and compassionate care in Canada.  





Here is a link to the official site.  If you are a Canadian, participate in one of their public consultations around Canada, either in person or through a written submission.

New Jersey Advisory Council on End-of-Life Care

After getting beat up by the Dartmouth Atlas, by the press, and by me for its comparatively more aggressive approach to end-of-life treatment, I was happy to see that New Jersey is now looking to establish an Advisory Council on End-of-Life Care in its Department of Health and Senior Services.  Last week, Senator Teresa Ruiz introduced S.B. 2199.  (Notably, she is also the primary sponsor for New Jersey's POLST bill., S.B. 2197.)  





The proposed Council would include 11 public members, including a health law attorney, a bioethicist, and a member of a minority racial or ethnic group.  However, there is no provision, but should be, for representation by a member of a disability group.

The Empirical Basis for Determinations of Medical Futility

In a soon-to-be-published article in the Journal of General Internal Medicine, nephrologist Ezra Gabbay and Tufts colleagues examine the empirical basis for determinations of medical futility.  Not surprisingly, after an extensive literature review to support Schneiderman's "1 in 100" threshold rule, they find that there is no such basis.  





There is both a lack of sufficient data and a lack of statistical confidence.  The authors conclude that "applying empirical outcome data to decisions about limiting treatment in critically ill patients is fraught with statistical and methodological problems."  The few studies that do provide data meeting Schneiderman's definition are limited to CPR.  

Atul Gawande, "Letting Go: What Should Medicine Do When It Can't Save Your Life?"

Atul Gawande has a predictably eloquent and insightful article at the New Yorker: "Letting Go: What Should Medicine Do When It Can't Save Your Life?"  Comments later. 

Legal Briefing: Conscience Clauses and Conscientious Refusal

My latest legal briefing, “Conscience Clauses and Conscientious Refusal," is available in the latest issue of The Journal of Clinical Ethics, (Summer 2010, Volume 21, Number 2: 163-80).

The rest of the issue:

Edmund G. Howe -- Sliding "Off" the Sliding Scale: Allowing Hope, Determining Capacity, and Providing Meaning When an Illness Is Becoming Worse But a Treatment May Help

Emily Bell and Eric Racine -- Deep Brain Stimulation, Ethics, and Society

Walter Glannon -- Consent to Deep Brain Stimulation for Neurological and Psychiatric Disorders

Emily Bell, Bruce Maxwell, Mary Pat McAndrews, Abbas Sadikot, and Eric Racine --Hope and Patients’ Expectations in Deep Brain Stimulation: Healthcare Providers’ Perspectives and Approaches

Joseph J. Fins and Nicholas D. Schiff -- Conflicts of Interest in Deep Brain Stimulation Research and the Ethics of Transparency

Marya Schechtman -- Philosophical Reflections on Narrative and Deep Brain Stimulation

T. Forcht Dagi -- Consenting to the Ineffable: The Problem of Neuromodulation and Altered Consciousness

Poorna Kushalnagar, Gaurav Mathur, Christopher J. Moreland, Donna Jo Napoli, Wendy Osterling, Carol Padden, and Christian Rathmann -- Infants and Children with Hearing Loss Need Early Language Access

Barbara Russell -- In Addition to Benefits and Harms: The Relevance of the Political

Rebecca Garden -- Language, Identity, and Belonging: Deaf Cultural and Narrative Perspectives

NICE on Steroids -- Crisis Standard Type Rationing in the UK

Many U.S. states have been drawing up plans for how to triage scarce resources in a surge situation triggered by an epidemic disease, terrorist attack, or natural disaster.  Such plans obviously call for rationing measures far more dramatic than those now being explored by public and private payers.  

But in the UK, the cuts already on the table are jaw-dropping.  Patients’ groups have described the measures as “astonishingly brutal”.  From the Telegraph, planned cuts include:

• “Plans to cut hundreds of thousands of pounds from budgets for the terminally ill, with dying cancer patients to be told to manage their own symptoms if their condition worsens at evenings or weekends.”


• “[T]he board of Sutton and Merton primary care trust (PCT) in London agreed more than £50 million of savings in two years. The plan included more than £400,000 to be saved by “reducing length of stay” in hospital for the terminally ill.”


• “[S]avings would be made by admitting fewer terminally ill cancer patients to hospital because they were struggling to cope with symptoms such as pain. Instead, more patients would be given advice on “self management” of their condition.”

Good Medicine Sometimes Makes Patients Unhappy

"Good Medicine Sometimes Makes Patients Unhappy."  This is the title of a post by Ralph Gordon over at KevinMD.

Gordon describes a medical futility dispute:  “The patient in his mid 80’s came with a massive heart attack. He had a heart attack at home and, unfortunately, wasn’t found until later. He developed muscle breakdown that affected his kidneys. He had to be started on continuous dialysis.  Despite aggressive medical management, his condition had progressively deteriorated. The blood pressure remained low despite the high doses of medications. All major organs started to shut down. The patient was dying. . . .  The refusal to provide futile care lead to a very unhappy family yet it was the right thing to do.  It was the right thing for the patient.”

I think it is worth highlighting two comments made on Gordon’s post.

1.  “On a more serious level of illness, my experience on my hospital’s Ethics Committee has been that the majority of requests for futile care come from newly immigrant or impoverished families, both belonging to populations culturally outside the evolving acceptance generally of the limits of medical care.”  The evidence for this is more than anecdotal, but is now supported by good empirical studies.

2.  “Expect more of this type of EOL scenario as care becomes further fragmented between primaries and specialists . . . .”  I have written on this blog and in articles that there are several reasons why there may be MORE futility disputes in 2015 than in 2010.  While there are significant efforts to improve communication with patients and families, broader changes in delivery systems increasingly impede.

20th Anniversary of the Americans with Disabilities Act

The 20th Anniversary of the Americans with Disabilities Act is on Monday, July 26th.

NRLC on Rationing at the End of Life

The National Right to Life Committee held its annual convention in Pittsburgh late last month in Pittsburgh.  Burke Balch, an admirable speaker, looks at rationing elements in the health reform legislation. (CSPAN video at 47:00)





Balch naturally highlights the UCLA study that suggests more treatment does actually produce better outcomes.  Due to the limits of prognostication, we do not know exactly whom treatment will help.  Sure, looking at a population of decedents at UCLA and a population of decedents at Mayo, UCLA spent way more than Mayo.  And both populations are dead.  It looks like the excess UCLA spending was "wasted."  But UCLA spent way more NOT ONLY on the decedents but on everyone.  Some of those in this broader population were really helped.  While spending appears to have been "wasted" on the decedents, it cannot be eliminated just for the decedents.  It would have to be eliminated for a much broader population, for some of whom it would have provided a benefit.  Since there is no way to distinguish those whom additional treatment will help from those whom it will not help, UCLA gives it to everyone.  It is hard to say whether this is excess or excellence.

Nemours Ad Campaign - "Whatever It Takes"

There is an excellent hospital right down the street from my law school: the Nemours / Alfred I. duPont Hospital for Children.  It is part of the largest network of children's hospitals and clinics in the country.  Driving back from Pittsburgh a few days ago, I saw a Nemours billboard that caught my eye:  "Our promise. To do whatever it takes."  

I did not have time to take a picture.  But in driving down the Pennsylvania Turnpike I thought “whatever it takes FOR WHAT.”  in looking for the ad campaign on their website, I saw the claim was indeed more qualified:  as "a promise to do whatever it takes to prevent and treat even the most disabling childhood conditions."  In one of the ad’s videos, the goal is declared to be “restore health and prevent disability.”  Good for Nemours.  They have a great campaign but do not promise “miracles” or outcomes that can instill false hopes in their patients’ parents.

Palliative Medicine and Hospice on American Public Media

In the second part of a series on end-of-life care, Marketplace's Caitlan Carroll visits the San Diego Hospice and the Institute for Palliative Medicine, where they are training physicians on how to tailor care around patients' last wishes.  This is a nice brief story (playable on-site or downloadable) that illustrates the benefits of hospice and palliative care.  The page also collects some useful resources.

The competing streams of revenue that keep patients away from facing their dying

Yesterday, on American Public Media's Marketplace, (at about 21:30 on the podcast) Kai Ryssdal and Caitlan Carroll explore why we spend so much on end-of-life treatments even though those treatments are not wanted by patients.  Here are a few excerpts from the transcript:

"Respirators, pacemakers and dialysis machines can keep our organs functioning when they no longer work so well on their own. New drugs and treatments stave off the effects of chronic diseases like cancer and AIDS for years. As a country, we've invested billions in the promise of life-saving technology."

"HENRY AARON: At a certain point, layering on additional care -- as many people have put it -- extends dying but does not really extend life."

"The process can also send families into financial ruin. And it's not the way most patients say they want to die. According to the Dartmouth Atlas Project, which tracks health care trends, more than 80 percent of patients say they don't want to be hospitalized or given intensive care during the last phase of their lives."

"So why are so many getting it? It's simple and complicated. No one wants to give up. Not families. Not patients or doctors. And then there's the health care system itself."

"DON SCHUMACHER: When you look at the health care system as a whole, there are competing streams of revenue that could keep patients away from facing their dying.  Everybody has, if you will, a dog in the end-of-life care fight."

"That's Don Schumacher. He heads the National Hospice and Palliative Care Organization. It concentrates on helping people with chronic and terminal disease stay comfortable, rather than trying to cure what cannot be cured. What Schumacher means is that the health care system is built on incentives that are tied to more care."

Supreme Court Oral Argument in Cruzan, Quill, Glucksberg

For those of you who need to reload the flash drive player in your car with something entertaining to listen to on your way to the beach, check out oral arguments before the U.S. Supreme Court in end-of-life disputes.  I use clips from oral arguments in my classes all the time.  But as non-lawyers may not be aware of their availability, I thought that I'd write this post.  





The Oyez Project is a multimedia archive devoted to the Supreme Court of the United States and its work. It aims to be a complete and authoritative source for all audio recorded in the Court since the installation of a recording system in October 1955.   You can play oral arguments (and often opinion announcements) on the site or download the MP3 file.  Plus,  the audio is often linked to the text.

• Cruzan v. Missouri DOH (1990) is here.


• Vacco v. Quill (1997) is here.


• Washington v. Glucksberg (1997) is here.


• Gonzales v. Oregon (2006) is here.

Judge rules in favor of removing life support from baby Jada Ruiz-Jones

Summit County, Ohio Probate Judge Bill Spicer has ruled in favor of a mother who wants to remove her 9-month-old daughter from life support over the objections of the baby's father.  Jada Ruiz-Jones is in pediatric intensive care at Akron Children's Hospital on a breathing machine in a persistent vegetative state.

Jada's father, 17-year-old, John Jones, is charged with shaking the infant girl so hard that bones in her legs were fractured and bleeding was caused in her brain. Jones had objected to removing the baby from life support.  Spicer ruled that Deja Ruiz ''acted in the best interest of Jada Ruiz-Jones when she consented to the withdrawal of life-sustaining medical treatment and consented to the use of comfort care and palliative treatment only for her daughter.''  ''For nearly four months now, a little girl's body has been hooked up to a breathing machine. The little girl that everyone loved inside is long gone. It is now time as her mother says to go to a better place with the Lord."  (Akron Beacon-Journal)

Surrogates Overruling Patient Preferences

In a letter in the latest New England Journal of Medicine [363(3): 295], French and Canadian physicians comment on an April 2010 article by Silveira et al. on surrogate decision making:  "From a European viewpoint we are very . . . surprised by the power of a surrogate to overrule all decisions, even when surrogate decisions are inconsistent with the patient’s written preferences."  





"Surprised"?  That was my initial reaction too.  But the terms that now best describe my reaction include "puzzled," "shocked," and "angry."

The Quality of Death: Ranking End-of-Life Care across the World

The Economist Intellience Unit was commissioned by the Lien Foundation, a Singaporean philanthropic organisation, to devise a "Quality of Death" Index to rank countries according to their provision of end-of-life care.  The full 40-page report is available here in PDF.  Here is a list of the key findings:

• The UK leads the world in quality of death; many developed nations must work to catch up.  


• Combating perceptions of death, and cultural taboos, is crucial to improving palliative care.


• Public debates about euthanasia and physician-assisted suicide may raise awareness, but relate to only a small minority of deaths.


• Drug availability is the most important practical issue.


• State funding of end-of-life care is limited and often prioritises conventional treatment.


• More palliative care may mean less health spending. 


• High-level policy recognition and support is crucial.


• Palliative care need not mean institutional care, but more training is needed.

The U.S. ranked 9th (tied with Ireland and just ahead of Canada), the Report explains, "principally because of the financial burden of end-of-life care."  The U.S. also apparently lost a lot of points on "public awareness of end-of-life care."  In its conclusion, the Report specifically calls out the U.S, for its "futile use of life-preserving medical technologies."

My Life, My Death, Whose Choice

Some of the billboards that the Final Exit Network has been sponsoring in other parts of the country have popped up in New Jersey.  The simple billboard says "My Life, My Death, My Choice."  But depending on the outcome in the Betancourt case, the Hillside, NJ billboard might soon state "My Life, My Death, Hospital's Choice."

Legal Fear Makes Me Practice Bad Medicine: Antibiotics for Dementia Patients

The Boston Globe reported, this week, on this study just published in the Archives of Internal Medicine.  Over one third of patients with advanced dementia have pneumonia in the last three months of life, and 42 percent of those patients will be on antibiotics in the last two weeks of life.  But the widespread practice of nursing homes routinely giving dementia patients antibiotics to treat pneumonia may be causing as much harm as good.  Patients who received no antibiotic treatments expressed the highest levels of comfort.  Comfort levels were progressively lower as the aggressiveness of care increased.

Paul Raia, vice president of clinical services for the Massachusetts and New Hampshire Alzheimer’s Association said conversations with families about treatment choices often don't happen because harried staff are worried about the legal consequences of their actions.  "Nursing homes want to make sure they aren’t going to get sued, so they are treating people as aggressively as possible and sending someone to a hospital.”

Richard Rudd BBC Documentary - Too Negative on Advance Directives

Richard Rudd was in a motorcycle accident that left him paralyzed and comatose on a life support machine.  His family recalled a conversation where Richard told them he wouldn't want to be trapped in a useless body.  So they agreed that it was time to let him go. (Telegraph)  The family was convinced there was "no way in a million years" that Richard would want to live with his injuries.  

Yet even as the Rudd family mentally prepared to say goodbye, his doctor discovered that Richard was still able to blink his eyes in response to simple questions. (He was in a locked-in state, not PVS.)  When asked if he wanted to stay alive, the father of two's answer was a categoric "Yes."  Doctors waited to confirm the diagnosis, and they were apparently right to do so.  

But somewhat disturbing is the twist that some large media are putting on the case, featured in the BBC documentary, Between Life and Death.  The Daily Mail, for example, quotes Richard's father:  "'Making a living will could be detrimental to your own health. Imagine if you changed your mind but couldn't communicate it."  It quotes Dr Andrew Fergusson: 'This case shows the weakness of giving legal force to documents which, by their very nature, can never cover every possibility. People often change their minds when the going gets rough. They suddenly discover there are things worth living for.”  

Advance care planning, like organ donation, has difficulty getting sufficient currency in the UK.  It will be even more difficult as a result of vivid suggestions that advance refusals of life-sustaining treatment are ill-advised because future prognoses can never be certain.  Of course, they can almost never be 100% certain.  We never demand such a level of evidence in medicine or law.  (Check out PalliMed's "Why Paul the Prognosticating Octopus Pesters Me")  Moreover, if we really operated on such a level of certainty, we would be causing a great deal of suffering.  

Length of Hospice Stays Have Been Growing

Here is some good news from a study, set to be published in the August issue of the Journal of the American Geriatrics Society.  The average length of hospice stays has doubled in 10 years.  





The study evaluated hospice use in U.S. nursing homes between 1999 and 2006. The study found the typical treatment time has increased from 46 days to 93 days. The researchers cited a standard daily payment rate for most Medicare hospice enrollment days as an incentive for some of the longer stays. The authors of the report noted that the increased use and availability of Medicare-sponsored hospice services was a positive development, but said they are concerned that stays are longest in states with the greatest provider growth.  (HT: BNA Health Care Daily)

The Personalize Your Care Act

Congressman Earl Blumenauer (Ore.) announced the introduction of bipartisan legislation that would provide a Medicare and Medicaid benefit for voluntary patient-physician consultations regarding advance care planning.  (The legislation, according to THOMAS and the Congressional Record, has apparently not yet actually been introduced.)  These consultations will ensure that individuals’ values and goals for care are identified, understood, and respected.  





Blumenauer introduced similar legislation in 2009 with broad bi-partisan support and was passed by the House of Representatives as part of the health care reform bill, though it was not included in the Senate version due to the reconciliation rules.  The legislation also provides grants to states to create Physician Orders for Life Sustaining Treatment (POLST) programs, allows portability of advance directives across states, and requires standards to include completed advance care planning documents within a patient’s electronic health record, increasing the likelihood these documents are kept up-to-date and available.  





In this video Blumenauer was joined by physicians, representatives from health care and senior groups, and a spokeswoman from a family who shared their personal experience with end of life counseling and care.

David Casarett in Newark, Delaware (Nov. 3, 2010)

Also in my neighborhood, at the Christiana Hilton in Newark, Delaware:

At 5:30 p.m. on Wednesday, November 3, 2010, David Casarett will discuss his latest book, "Last Acts: Discovering Possibility and Opportunity at the End of Life" and will share the compelling stories of the many patients he has cared for in 10 years as a hospice and palliative care physician.  He will discuss ways that people can better understand their end-of-life choices and decisions.  

Register for reception, dinner, and discussion through the Delaware End-of-Life Coalition.

Professional Viewpoints in End of Life Ethical Dilemmas (Nov. 17, 2010)

On November 17, 2010, in my area, at the Holiday Inn in Runnemede, New Jersey, the Tri County Ethics Committee will be offering a Seminar:  “Professional Viewpoints in End of Life Ethical Dilemmas.”  The presenters include:

Stephen Goldfine, M.D., A.B.F.P., A.B.H.P.M.

Chief Medical Officer, Samaritan Hospice

Hospice Physician of the Year

New Jersey Hospice & Palliative Care Organization

Jerold E. Rothkoff, Esq.,

Law Offices of Jerold E. Rothkoff

Marcie Cooper, MSW, LCSW, C-ASWCM

Marcie Cooper MSW, LLC

Cayla Wilson - Comatose, No Longer Pregnant, Full Code

Portland, Oregon residents Bill and Denise Wilson face a very tough life and death decision that few can even imagine.  Their daughter, Cayla, has been unconscious since a horrible car accident on April 15th.  Doctors gave Cayla no chance, but urged her parents to keep their 5 1/2 month pregnant daughter alive to give birth.  On May 22, Cayla gave birth to a baby girl, JaiKyla.  This week, doctors asked the Wilsons if they were now ready to give them permission not to resuscitate Cayla if her condition takes a turn for the worse.  The Wilsons can't do it.   It's too much.  "I'm not ready to let her go."  (Oregonian)

Bad Surrogate in a Brain Death Case: Hernandez v. Abel

Hernandez v. Abel, No. 08-2013, is a case now being briefed in the U.S. Court of Appeals for the Fourth Circuit.  It has amazingly bad facts for the plaintiff.  And the legal arguments are not much better.  Therefore, it should be no surprise that the plaintiff's lawyer is facing significant sanctions.

In July 2006, infant, Judith Hernandez (Baby Judith), was admitted to the Medical University of South Carolina, after she suffered multiple skull fractures as the result of being beaten by her father, Plaintiff Ramon Hernandez. In September 2006, MUSC medical staff declared Baby Judith clinically dead and removed her from an artificial ventilator. The next day, on September 6, 2006, Plaintiff-father, was charged with Murder/Homicide.  

A few days later, Plaintiff-father filed a Complaint against MUSC physicians.  Subsequently, Plaintiff-father pled guilty to the charge of Murder/Homicide.  During a September 2007 hearing, Plaintiff-father admitted that he caused the death of Baby Judith. He specifically admitted that he “cause[d] physical injury to [his] child by striking [her] in the head with [his] fist.”  He further acknowledged that the skull fractures that he inflicted caused Baby Judith’s death.

Remarkably, Plaintiff’s Attorney admitted during a district court hearing that the motivation for seeking to prevent MUSC from “removing life support” was to avoid charges of murder/homicide by continuing to artificially ventilate Judith’s body for “a year and a day.”  Essentially, Plaintiff’s Attorney argued that if MUSC had not “pulled the plug,” she might have “lived” long enough for Plaintiff-father to avoid being charged with homicide.

While Plaintiff-father rattles off a number of legal theories, here is my favorite.  He argues that MUSC violated EMTALA by failing to provide stabilizing treatment to Judith Hernandez and by failing to prevent material deterioration of her condition.  The hospital naturally points out that the patient was dead.  In response, Plaintiff-father contends that the EMTALA conflicts with, and therefore preempts, the South Carolina Uniform Determination of Death Act. EMTALA, not state law, describes the appropriate procedures for assessing and treating patients who present to hospitals in an emergency medical condition, and dictates that hospitals must assess and stabilize patients experiencing an emergency medical condition and prevent any material deterioration of that condition.

Antisa Khvichava Turns 130 Years Old

Authorities in the former Soviet republic of Georgia claim that Antisa Khvichava turned 130 on Thursday.





If true, that makes her the oldest person on Earth.  (AP)

MOST & POST -- They REALLY Work

A study published in the July issue of the Journal of the American Geriatrics Society confirms that individuals who are chronically ill or in a nursing home are more likely to receive the end-of-life-care that they want, if they have made their wishes known through a Medical Order for Scope of Treatment (MOST).  

MOST forms address the shortcomings of other legal documents that can be too vague or hard to find during a medical emergency.  MOST forms travel with the patient, are brightly colored and are very specific to what the patient wants -- being hospitalized, receiving CPR, feeding tubes or being put on a breathing machine.  And, unlike advance directives, MOST forms are immediately implementable by nurses, EMTs, ED staff, and others.  Researchers tracked the treatment of more than 1,700 long-term nursing home residents.  About half had POST forms.  Those with the form were 59 percent less likely to receive unwanted treatment than those with a standard "do not resuscitate" order.  This is important because over 70% of Americans say that they do not want aggressive interventions at the end of life.  

Bridget Williams on Betancourt v. Trinitas Hospital

Bridget Williams has a post at the University of Oxford's Practical Bioethics blog.  She provides a reasonable review of the case and then defends what I and others have criticized: the hospitals's motivation by costs.  Williams grounds her defense on both stewardship and triage rationales.  I agree that those can both be valid bases for refusing treatment.  But there is no evidence that either was applicable in this case.  

Williams uses many different terms to describe Betancourt's treatment:  (1) "inappropriate medicine," (2) "bad medicine," (3) "no hope of improvement," (4) "impossible goals," and (5) "little or no capacity to benefit."  I am not sure any of these terms helps very much to advance the analysis.  The family wanted dialysis to keep Ruben Betancourt alive.  Dialysis could and did achieve just that.  Consequently, the goals were not "impossible."  The family did hold out "hope of improvement."  And while unlikely, improvement was at least possible.  Whether the medicine was "inappropriate," "bad" or offered "benefit" is unknown because we have no tests for determining any of these value-laden terms in the fuzzy gray area where this and most futility cases lie.  

Finally, Williams writes: "In the United Kingdom patients and surrogates do not have the right to demand treatment that a doctor believes is not in line with standard medical care and is not in the patient’s best interests." (emphasis added)  This is a little misleading because the ultimate test is not the doctor's "belief" about best interests.  Pursuant to the 2004 ECHR ruling in Glass, the court will determine whether patients and surrogates have the right to demand certain treatment.

Between Life and Death - on BBC One

On Tuesday, BBC One will broadcast, "Between Life and Death," a provocative documentary following doctors who can now interrupt, and even reverse, the process of death. 

Filmed over six months in the UK's leading brain injury unit (Addenbooke's Hospital, Cambridge), it follows the journey of a man who, by only moving his eyes, is eventually asked if he wants to live or die. Two other families are also plunged into the most ethically difficult decision in modern medicine.

Notably, the Telegraph reports, this week, that Prof. Menon considers "neurointensive care is not just about survival, it's about the quality of survival."  His aim is not to add to those warehoused in nursing homes for years in a permanent vegetative state.