New Canadian Case - IWK Health Centre v. Cook

Krista Cook's son, Bryson, is in a deep coma and is breathing with the aid of a ventilator. He was born Feb. 1, a month premature, at the IWK Health Centre in Halifax.  Scans show very little activity as a result of an injury that cut off the oxygen to his brain.  

Krista says that she understands her baby's prognosis.  But she also want times with her child uninterrupted, "without being told constantly the medical facts I already know."    She will meet with the IWK Health Centre ethics committee this week.  Presumably, since she just wants a little more time, a compromise will be reached.  (CBC)

Compromise Reached in Maraachli Case

Today the London Health Sciences Centre in Ontario announced it has backed down on its refusal to let the family take Joseph Maraachli home and let him die there.  But officials are standing strong over the tracheotomy, instead insisting that hospital staff take Joseph off the ventilator once he gets home - perhaps only giving him minutes to live.  (Daily Mail)

It is not clear if the Mariaachlis will continue their fight to get Joseph a tracheotomy, or if they will accept the hospital's decision to bring their boy home and take him off the respirator, likely ending his life.

Maraachli Appealing to the Court of Appeal

Joseph Maraachli's parents were unable to reach a compromise with the hospital.  So, it now appears that they will be appealing the decision of the Ontario Court of Justice affirming the CCB ruling.  

The Court of Appeal for Ontario is basically the court of last resort for the province.  The Supreme Court of Canada hears appeals from less than 3% of the decisions of the Court of Appeal.

New Case - In re S.S. - Surrogate Wins

In the past few weeks, there have been two cases of surrogate selection in medical futility cases.  First, in the ongoing high-profile Joseph Maraachli case, the Ontario CCB ruled in favor of the hospital and ordered the parents to consent to the recommended treatment.  Second, in the Albert Barnes case, the Minnesota probate court ruled in favor of the hospital.  It removed the patient's wife and appointed a new decision maker. 

In contrast to these two cases, in another recent case the CCB ruled in favor of the surrogate.  In In re S.S., the patient was a 58-year-old woman inpatient at Grand-River Hospital in Kitchener, Ontario (pictured).  She was admitted to ICU in October 2010 with catastrophic brain injuries.  "She has had a full tracheotomy and has been on full life support since that time. The patient has a history of diabetes, severe neuropathy, renal failure, hypertension, glaucoma, and is wheel chair bound. She recently suffered a multivascular stroke involving the neurocortex as well as ischemic brain lesion. A tube feeds her." 

The medical team was of the opinion that this patient would "not recover from her medical difficulties and that acute interventions such as ventilation, resuscitation, life support sustaining measures and future admission to an ICU are futile and therefore not medically indicated."  Because the patient's daughter and substitute decision maker refused to follow the team's advice, the team applied to the CCB under Section 37 of the Health Care Consent Act.

But the CCB found that the surrogate (the patient's daughter) proved that the patient was of the Muslim faith and would want "life to be sustained at all costs, even if there is pain . . . ."  Since a surrogate can be replaced only if she violates Section 21 of the HCCA, the CCB dismissed the physician's application.  This surrogate complied with Section 21, because she made her treatment decision in accordance with the patient's "values and beliefs."

This case illustrates one of the key limitations of a surrogate selection approach.  Sometimes the surrogate is a true and faithful agent for the patient.

Seniors Afraid of Getting TOO MUCH Treatment

On Wednesday, I was on a panel with a hospice manager and a nursing home administrator, for the League of Women Voters for Kent County, Delaware.  



At one point, our physician moderator asked the group of about 50 seniors: "Are you afraid that you will be denied life-sustaining medical treatment under PPACA?"  Not a single person responded in the affirmative.  Instead, many people explained that they were far more afraid of getting too much treatment, treatment that they did not want and being left a million dollars in debt.

Stopping Life Supporting Treatment without Patient/Surrogate Consent

Los Angeles physician Maurice Bernstein, who runs the Bioethics Discussion Blog, currently is hosting a discussion focused on the following question:  Under what conditions, if any, should a physician deny further attempt to keep a patient alive but continuing comfort care in defiance of the known request of the patient or the family to continue life supportive treatments?  Here is his further explanation of the discussion focus:

Modern medical science has provided physicians the ability and tools to continue life despite inability to cure the patient of the illness yet maintaining the patient’s life even if the life is one of being permanently unaware or, to an average patient, a life of no further personal value.



It is not unusual these days that physicians are challenged by the patient or the patient’s families to continue the life supportive treatments until death regardless of the negative consequences to the patient and others.



Should physicians be permitted to reject such requests? Currently, physicians can reject requests for treatment which has not been found to have any scientific basis for its use and which its use is not in keeping with professional standards.  Such a treatment is characterized as “physiologically futile.”  But what if the treatment has a scientific basis for use and if used can keep the patient alive but the treatment doesn’t cure?  This form of treatment cannot be considered futile (of no value) if on continuing such a treatment the patient accepts the consequences of maintaining their life with this treatment but without cure.  Nevertheless, does the patient's or family's desires trump any advice of the physician to terminate life support?  Any answers? 

 

Poetic Medical Futility Quote

}“It seems we have lost sight of the difference between patients who die because their hearts stop and patients whose hearts stop because they are dying.” 

–          -- Graham, N Engl J Med 318:1273, 1988 

Virginia Tables Amendment to Futile Treatment Law

I blogged, last month, about a proposed amendment to the Virginia Health Care Decisions Act.  This amendment would have limited the bases on which treatment could be unilaterally refused.  Earlier this month, that bill (HB 2068) was tabled by its patron, Delegate Robert Bell.  

Maraachli Being Helped by "Secret" Network

A spokesman for the Maraachli family told the Montreal Gazette that he belongs to a large, "secret" network of people — some of them health-care professionals — who advocate on behalf of vulnerable sick children whose families are caught in similar fights with doctors.

No Transfer for Joseph Maraachli

As is usually the case in medical futility disputes, a hoped-for transfer for Joseph Maraachli did not materialize.  (Winnipeg Free Press).  Of course, the usual rule in treatment conflicts is "treat until transfer."  The provider must comply with the surrogate decision unless and until the patient is transferred.  

In contrast, in the instant case, the CCB and the Ontario Superior Court already ruled that the providers may stop treatment.  Therefore, it is the parents who must "consent or transfer."  Since it looks like they will do neither, a new guardian is likely to be appointed.  This case may end up being resolved similarly to the way in which Minnesota recently resolved the Albert Barnes case.

Maraachli Parents Refuse to Comply with Court Order, Seek Transfer to USA

An Ontario Superior Court judge ordered that 13-month old Joseph Maraachli’s breathing tube be removed on Monday.  But his family refused.  His parents now are trying to move their son to a Detroit hospital. The Children's Hospital of Michigan agreed to look at Joseph's lengthy medical record and determine whether he's a candidate for transfer.  (Fox)

Free Delaware Advance Care Planning Series in March

This March, at the First Unitarian Church in Wilmington Delaware is a series of non-denominational programs titled "To Live until I Die."  The series is designed to help individuals to choose, before their time comes, a peaceful, dignified and life-affirming process for the end of life.  Sessions on successive Sunday afternoons at 4 p.m. in the church sanctuary will feature a talk by a topic-specific professional followed by a question-and-answer period.  Refreshments will be served in the Parish Hall.  The series is free and open to the public.  Copies of the Advanced Health Care Directives of Delaware, Pennsylvania and Maryland will be available free.  "Five-Wishes," an expanded form for expressing your wishes to your physician and family, will be available for $2.

• March 6, 4 p.m.:  Ethical/Religious Insights "What is life? If your brain is dead are you alive?"  Speaker: Alan Fox, Ph.D., Director of Master of Arts in Liberal Studies program, University of Delaware


• March 13, 4 p.m.:  Medical Issues "End-of-life discussions between doctor and patient help ensure that one gets the care one wants."  Speaker: TBA


• March 20, 4 p.m.:  Legal/Economic/Societal Interests "Using unwanted procedures in terminal illness is a form of assault...In economic terms, it is a waste."  Speaker: Thomas Harley, Attorney; Ferry, Joseph & Pearce, P.A.


•  March 27, 4 p.m.: Family/Personal Traditions "Advanced care planning improves end-of-life care and patient and family satisfaction and reduces stress, anxiety and depression in surviving relatives."  Speaker:  Mart Amick, M.D., Internal Medicine Associates

Wesley Smith Is Right: No Star Chamber Secrecy for Futility Disputes

Last Saturday, Wesley J. Smith repeated a metaphor that he has been using for a few years to describe the resolution of medical futility disputes by intramural hospital committees:  "star chambers."  





Pointing both to the recent Albert Barnes case in Minnesota and a case in which he was involved, Smith argues that "disputes over whether to continue wanted life sustaining treatment belong in court, not in secret and confidential bioethics committee meetings."  His post was not a categorical opposition to unilateral decisions to withhold or withdraw life-sustaining treatment (as he has made in the past).  Rather, he attacks the process by which many such decisions are reached.  





I mostly agree with Smith on this one.  Indeed, I have written-- here and here and here -- about the unfairness of having intramural ethics committees decide life and death conflicts.  And I am continuing that line of argument both in an "Legal Briefing: Healthcare Ethics Committees," forthcoming in The Journal of Clinical Ethics 22(1), and in a piece this summer.  But while I agree with Smith's criticism, I am not sure I agree with his solution:  "proper venue is in front of a judge in open court, with witnesses under oath, a public record, the right to cross examination, and appeal."  Dispute resolution process through a trial court is too slow, too cumbersome, too expensive.  The competence and neutrality of the decision maker can instead be provided by independent ethics committees or by specialized tribunals like Ontario's CCB.

Arizona May Join NY and CA with an End-of-Life R2K Law

Proposed R2K legislation in Arizona failed in the last session.  But, this month, Arizona legislators introduced S.B.1447.  The key operative provision in the bill is this:

If a patient is diagnosed with a terminal illness or condition, the patient's attending health care practitioner shall offer to provide the patient with information and counseling regarding palliative care and end-of-life options appropriate to the patient, including:

1.  The range of options appropriate to the patient.

2.  The prognosis, risks and benefits of the various options.

3.  The patient's legal rights to comprehensive pain and symptom management at the end of life.

HHS Narrows Scope of Federal Conscientious Objection Protection

On Friday, DHHS issued a Final Rule that narrows the scope of ("partially rescinds") federal conscientious objection protection for healthcare workers.  

Basically, in 30 days, the scope of the regulations will be limited to the scope of the underlying statutes.  Those statutes concern only abortion and sterilization.  Therefore, the federal regulations will not longer cover end-of-life medical treatment.  Rob Stein at the Washington Post has been closely following conscience laws for several years.

Ontario Superior Court Orders Withdrawing Life Support of Joseph Maraachli over Parents' Objections

Ontario Superior Court Justice Helen Rady has affirmed the decision of the Consent and Capacity Board, and has ordered the parents of 13-month-old Joseph Maraachli to comply with the doctors’ decision to remove the boy’s breathing tube by 10 a.m. Monday.  (Toronto Sun)  Maraachli, who suffers from a progressive neurological disease, has been at the London Health Sciences Centre since October. 

The parents wanted doctors to perform a tracheotomy so their son could breathe and be allowed to die at home.  But Joseph's doctors say while a tracheotomy - an incision is made in a patient's airway, to help breathing - may prolong the baby's life, it's futile in this case and would likely cause much discomfort. It would certainly also increase the risk of infection and pneumonia.

Health, Illness and Ethnicity conference

Two-day Conference: ‘Health, Illness and Ethnicity: Migration, Discrimination and Social Dislocation’

Centre for the History of Medicine in Ireland, University College Dublin, 10-11 June 2011

Organisers Catherine Cox (University College Dublin), Hilary Marland (University of Warwick) and Sarah York (University College Dublin and University of Warwick).

This two-day Wellcome Trust funded conference will focus on the relationship between illness and migration, discrimination and social dislocation. By migration, we refer to both migration between countries and internal movements of populations, for example between regions or from rural to urban areas. Our focus is primarily on the nineteenth and early twentieth centuries, but we are also interested in exploring the relationship between historical concerns surrounding health and ethnicity and current health practice and policy. The workshop is intended to contribute to debates on the susceptibility of specific groups to medical interventions, as well as interpretations of the relationship between health and illness, migration and ethnicity, and the management of the health and illness of ethnic groups within broader health and welfare strategies. The workshop will explore the experiences of particular groups, be these ‘foreigners’, migratory peoples, patients of varied religious denominations and those suffering from particular disorders or diseases. Participants will include keynote speaker Alison Bashford, Roberta Bivins, Kat Foxhall, Alan Ingram and John Welshman. The conference will also provide the organisers with an opportunity to present on their project on ‘Madness, Migration and the Irish in Lancashire, c.1850-1921’ (funded by the Wellcome Trust). We are keen to involve a mix of early career and established scholars, historians and academics from a broad range of disciplines, policy makers and practitioners in the conference.

We request that titles and abstracts for the conference be submitted by 1 March 2011. Abstracts should be c 500 words and include a title and summary of the paper, as well as details of the address, email and telephone numbers of the speaker(s). The workshop will be held at University College Dublin. Local costs for hotel accommodation (2 nights) and meals will be covered by the organisers, but we ask participants, where possible, to cover the costs of their travel to Dublin drawing on their own institutional resources. Modest funds may be available to cover the travel costs of speakers lacking institutional support.

Please contact either Catherine Cox or Sarah York for further information.

Al Barnes Dies Before New Surrogate Can Help Him

The wheels of justice have moved a little too slowly to help Al Barnes.  While his wife was replaced as surrogate decision maker, the new surrogate never got the chance to remove the life support Al Barnes did not want.  (Star Tribune)

Restart of the "Health Care Cost Monitor"

The Health Care Cost Monitor, a Hastings Center blog, has just been restarted.  The Health Care Cost Monitor provides commentary and opinion on cost control as part of the implementation of health care reform and in the broader context of assessing national priorities. It was created to fill a void:  the cost crisis has not been addressed in the public and legislative arenas with the care, depth, and nuance it requires. Starting with the expert analysis and commentary, and inviting reader comments, the HCCM hopes to spawn a conversation that extends beyond itself and to policymakers charged with carrying out health reform and setting spending priorities that enable the country to flourish.

The co-editors explain:  This time we will expand the scope a bit by taking on the work of three ongoing streams of inquiry at The Hastings Center that have significant overlap, and which we call “Costs, Deficits, and Priorities.” Health care costs, and particularly Medicare, are clearly part of the deficit debate. Our project on assessing national priorities is looking at priorities less in terms of government spending and more in terms of what the country needs for a flourishing future – needs that do not rely exclusively on government spending but that bear on the deficit problem. It is a complex mixture, and one we hope the blog can illuminate.

Wilkinson and Savulescu on "Futility in the ICU"

Oxford bioethicists Dominic Wilkinson and Julian Savlescu have a forthcoming article in Current Opinions in Anesthesiology titled "Knowing when to stop: futility in the ICU."  Comments will follow later.  Here is the abstract:

Purpose of review

Decisions to withdraw or withhold potentially life-sustaining treatment are common in intensive care and precede the majority of deaths. When families resist or oppose doctors’ suggestions that it is time to stop treatment, it is often unclear what should be done. This review will summarize recent literature around futility judgements in intensive care emphasising ethical and practical questions.

Recent findings

There has been a shift in the language of futility. Patients’ families often do not believe medical assessments that further treatment would be unsuccessful. Attempts to determine through data collection which patients have a low or zero chance of survival have been largely unsuccessful, and are hampered by varying definitions of futility. A due-process model for adjudicating futility disputes has been developed, and may provide a better solution to futility disputes than previous futility statutes.

Summary

Specific criteria for unilateral withdrawal of treatment have proved hard to define or defend. However, it is ethical for doctors to decline to provide treatment that is medically inappropriate or futile. Understanding the justification for a futility judgement may be relevant to deciding the most appropriate way to resolve futility disputes.

The 12-page Court Decision in the Albert Barnes Case

I posted, here, the court's decision in In re Guardianship of Albert Barnes (Hennepin County, Minn. Probate Court, Feb. 4, 2011).

Wife Loses Status as Substitute Decision Maker for Husband

A Hennepin County judge has taken medical decision-making authority from the wife of 85-year-old Al Barnes, calling her "deceiving" and rebutting her claims that his severe dementia and other conditions are reversible.  (Minneapolis Star Tribune)  

"He is dying, slowly and painfully," the ruling stated. "The evidence before the court establishes that no amount of medical care and treatment is going to change that."  Alternate Decision Makers, a Minneapolis firm, will remain as emergency guardian for Barnes, at least until a March 3 hearing, when a permanent guardian is named.

Mother Opposes Hospital Stopping Life Support for 8mo old: McKay v. St George's Hospital

Jade McKay's eight-month-old son, Zakkari Johnson, weighed only 1lb 3oz when born and was not expected to survive 24 hours.  (UK Sun)  He had three major operations to treat chronic lung disease.  But mother Jade has been told that doctors plan to take baby Zakkari off his life support system.  Jade vowed last night she would take them to court in a bid to save his life.

“He’s fought so hard to be here. When I looked into his eyes I knew he had it in him to survive. If they take him off life support he’ll die, I can’t understand why they want to kill my baby"  St. Georges Hospital explained: “This baby has been receiving intensive care support since birth. He remains critically ill and our clinicians will continue to meet with the family.”  (UK Mirror)

Bad, Bad Surrogate

It is one thing for a surrogate to not protect the patient's preferences and best interests.  There was already significant evidence that Lana Barnes was just that type of unfaithful surrogate.  But testimony at yesterday's hearing shows that she actually took things one step further.  (Star-Tribune)  Lana deliberately altered and/or destroyed her husband's 1993 advance directive.  She produced only the part appointing her as agent but not the instructional part that indicated he would not want the aggressive treatment he is now receiving.  

Technically, the 1993 advance directive was void in any case because Al Barnes had completed a 1994 advance directive.  Minn. Stat. 145C.09.  Nevertheless, this still makes Lana looks like a very poor choice for guardian, as she appears to have committed a felony.  Minn. Stat. 145B.105 provides:

Subdivision 1. Gross misdemeanor offenses. Whoever commits any of the following acts is guilty of a gross misdemeanor:

(1) willfully conceals, cancels, defaces, or obliterates a living will of a declarant without the consent of the declarant;

(2) willfully conceals or withholds personal knowledge of a revocation of a living will;

(3) falsifies or forges a living will or a revocation of a living will;

(4) coerces or fraudulently induces another to execute a living will; or

(5) requires or prohibits the execution of a living will as a condition for being insured for or receiving all or some health care services.

Subd. 2. Felony offenses. Whoever commits an act prohibited under subdivision 1 is guilty of a felony if the act results in bodily harm to the declarant or to the person who would have been a declarant but for the unlawful act.

Remove Ethics Committee Immunity

Robert Painter proposes removing ethics committee immunity for decisions to unilaterally withhold or withdraw life-sustaining treatment.  (Interestingly, things seem to be moving in just the opposite direction.  A new Texas bill, H.B. 531, would actually EXPAND provider immunity for noncompliance with patient wishes and instructions.)  

Following Painter's suggestion and removing immunity would go a long way toward putting Texas in much the same situation as every other state.  That is, given serious uncertainty over the standard of care with respect to inappropriate and non-beneficial treatment, most providers will be chilled from writing unilateral stop orders.  Even in malpractice-reformed Texas, they will be too afraid of ex post facto sanctions or at least of proceedings and legal process.

I do not think that removing immunity is essential to reform of TADA.  The internal process can be improved as proposed in 2007 and 2009 bills.  But the prospect of addition, external review would make the process more fair.  This could be a second-choice alternative to improving the quality of the ethics committee review process.

Barnes v. Methodist Hospital -- New Strong Evidence for Hospital

Today was the second hearing in the Minneapolis, Minnesota dispute between Lana Barnes and Methodist Hospital over the treatment of Barnes's husband and Methodist's patient, Al Barnes.

Jeremy Olson reports that today's testimony revealed Al has an additional health care directive saying that he did not want a feeding tube or other extraordinary measures if he were in a terminal condition.  That advance directive states:  “If at such times there is no reasonable expectation of my recovery from extreme physical or mental disability, I direct that I be allowed to die and not be kept alive by ventilators, artificial means or ‘heroic measures.’”  Even though Barnes has been in the hospital's care for more than a month, Methodist did not have that document.  

In addition to the document, James Barnes, Al's son from a prior marriage, said that he and his father had discussed end-of-life scenarios.  “We’ve had conversations (where he said), ‘I do not want to live on a machine, that’s not living,’” James Barnes testified. “I believe Lana is doing what she believes is right, but it is not my father’s wishes.”  (Fox News) 

This new evidence seems to substantially strengthen the hospital's already good case.  Pursuant to Judge Maus’ order in January, Al is already under the temporary guardianship of a professional guardian service.  That arrangement may soon become permanent.

World's Oldest Person Dies in Texas

Eunice Sanborn, the world's oldest person, died yesterday at the age of 115.  (NY Daily News)