Joseph Maraachli v. Victoria Hospital (Ontario)

One-year-old Joseph Maraachli has been at Victoria Hospital in London, Ontario, since mid-October, suffering from a "severe and progressively deteriorating neurological state."  Doctors concluded that Joseph has no prospect of recovery and will only continue to deteriorate.  Accordingly, they decided to remove his breathing tube, which is keeping his airway clear of fluids and secretions on which he would otherwise choke.

But Joseph's parents, Sana and Moe, are opposing this decision.  This is not a typical futility dispute.  The parents are not demanding additional aggressive treatment.  They recognize Joseph is dying but just do not want that to happen at the hospital.  They want doctors to perform a tracheotomy, so they can take Joseph home.

The Maraachlis have retained a lawyer and gone before the Consent and Capacity Board of Ontario.  Following a hearing last week, the CCB sided with the doctors. Joseph's breathing tube was scheduled to be removed at 10 a.m. Friday.  But the parents have appealed (and thereby stayed) that ruling to the Superior Court.

Lana Barnes v. Methodist Hospital -- Back to Court on Feb. 2

Jeremy Olson at the Minneapolis Star-Tribune has a new story, today, summarizing the ongoing Barnes v. Methodist Hospital medical futility case and putting it into context.  Olson rightly sought input from Steve Miles, an expert on these issues and a key player in the similar 1991 Helga Wanglie case.

Pediatric Medical Futility

Christopher Johnson has a website about seriously ill and injured children – what their needs are, how we care for them, and what happens to them. One part of the site includes a blog on which Dr. Johnson made the following comments a few days ago:

Doctors often make the argument that we should not prolong suffering. Establishing if a patient is actually in pain can be difficult, and anyway we virtually always have the means to relieve pain in these situations. More telling to me is the argument that families cannot compel physicians to act unethically, and most of us regard futile care as unethical. Yet even then the physician can simply withdraw from the case, although from experience I can tell you it is difficult to find another physician to take on cases like this, and abandoning our patient without finding them another physician is clearly unethical (and illegal).

What to do? I have been involved in several cases like the one Dr. Truog describes. Thankfully, in all but one the family and the doctors were ultimately able to reach an understanding both sides accepted. In the one case in which we could not agree, nature ultimately decided things for us, as she often does.

Texas Hospital Association to Oppose "Treat until Transfer" Amendment to TADA

The Texas Hospital Association identified nine “key issues” that will comprise its 2011 state legislative agenda.  Among those nine issues is defense of the unilateral treatment refusal provision in section 166.046 of the Advance Directives Act.  Here is the THA’s description of the issue:

While every state has laws regarding advance directives, Texas is one of a few states that have addressed end-of-life care comprehensively, including a structured dispute resolution process. In many other states without the protections in Texas law, a physician can make a unilateral decision to stop treatment of a terminally ill patient. Advance directives allow patients to indicate treatment preferences for a time in the future when they are unable to make their wishes known. Advance directives only apply when a patient is declared terminally or irreversibly ill and unable to participate in decision-making.  

Texas law includes a process based on American Medical Association guidelines to address disagreements between patient surrogate decision-makers and physicians about medical treatment near the end of life. In those rare cases where the family wants to continue life support against medical advice, state law provides a mechanism to transfer the patient or remove life support and protect the patient from indefinite suffering. If transfer cannot be secured, the family has the right to pursue legal action against the hospital and treating physician to prevent the withdrawal of life support.  

For several legislative sessions, attempts have been made to nullify the dispute resolution process by requiring “treatment until transfer,” which in some cases is indefinitely.  A “treat-until-transfer” provision would establish a government-mandated identical outcome for every case, damage the physician-patient relationship, compromise physicians’ moral integrity, increase the risk of frivolous litigation with attendant costs, and create a government mandate superseding a patient’s rights and the physician’s responsibility to the patient.  

Texas hospitals and physicians believe that there are revisions that could make a good law better, but “treat until transfer” is not one of those changes.

Hospital Death Panels in Texas

Attorney Robert Painter has a fast-paced, 90-second, graphic description of the Texas Advance Directives Act.

Connecticut to Ban End-of-Life Counseling

Perhaps in reaction to New York's recent requirement of end-of-life counseling, a proposed bill in Connecticut (S.B. 545) would "prohibit any private or public health care insurer from . . . requiring insured persons to participate in end-of-life counseling that promotes limited access to certain treatment options for such persons."  

Wanglie - Little Progress in 20 Years?

The Albert Barnes case is very similar to the Helga Wanglie case which was brought to the same Hennepin County, Minnesota court almost exactly twenty years ago in May 1991.  An editorial in yesterday's Minneapolis Star Tribune argues that it is "sadly clear that we are no closer to agreeing on the best answer for the hard question Helga Wanglie's case posed."  

I am not sure that I agree with this.  As I have been trying to demonstrate, the surrogate replacement approach tried (unsuccessfully) in the Wanglie case has proven increasingly successful in futility disputes over the past two decades.

The editorial goes on to praise the hospital for being "courageous and commendable . . . risk[ing] bad publicity to pursue court action they believe will protect their patient."  I agree.  As Norm Fost has colorfully stated, "doctors are more afraid of going to jail than going to hell."  Legal fear typically chills providers.  As the editorial states:  "Not wanting a court fight or bad publicity, many hospitals just continue to treat patients for whom there is no hope of recovery."

When Do Doctors Override a Patient's Wishes?

When Do Doctors Override a Patient's Wishes?: MyFoxTWINCITIES.com

New Case: Lana Barnes v. Methodist Hospital (Minneapolis)

Albert Barnes appointed his wife as his medical decision-maker several years ago, and asked that she pursue aggressive care if there was any chance he could recover.  That is exactly what she is doing.  But Albert's healthcare providers at Park Nicollet Methodist Hospital are asking the Hennepin County Probate Court to remove her decision-making authority over Barnes' care, arguing that she is making misguided and reckless choices.  Lana argues that "the doctors are recommending a 'death order' and I don't think my husband should die of a misdiagnosis."  (Star Tribune)

Probate Referee Dean M. Maus has delayed decision on Methodist's petition until February 2d.  But he did place temporary responsibility for Barnes' care with Alternate Decision Makers Inc., a Minneapolis firm that specializes in such disputes.

Surrogate Selection as Solution to Intractable Futility Case: Al Barnes

I recently published a comprehensive examination of using surrogate selection as a solution to intractable futility disputes.  A new case in Minnesota will be testing this approach (once again) next week.  (Fox News)  Healthcare providers have determined that continued treatment for Al Barnes is inappropriate.  But Al's wife, Lana Barnes, has insisted that all interventions continue.  (Star Tribune) 





Notably, this is not just a case in which the providers and surrogate differ on what constitutes a worthwhile quality of life.  Rather, the providers in this case think that Lana has a "fixed delusion" about her husband's prognosis and may actually lack capacity.  Providers are asking the Hennepin County Probate Court to transfer decision making authority from Lana to Alternate Decision Makers, Inc., a professional guardian.  Notably, this approach to this same court famously failed twenty years ago in the Helga Wanglie case.

Scandia, Minn. Woman Battles Methodist Hospital Over Ailing Husband: MyFoxTWINCITIES.com

Virginia to Clarify and Limit its Futile Treatment Law

For nearly two decades Virginia law has provided that "Nothing in this article shall be construed to require a physician to prescribe or render health care to a patient that the physician determines to be medically or ethically inappropriate. . . . If the conflict remains unresolved, the physician shall make a reasonable effort to transfer the patient to another physician who is willing to comply with the request of the patient, . . . a reasonable time of not less than fourteen days to effect such transfer. During this period, the physician shall continue to provide any life-sustaining care to the patient . . . ."  (Va. Code 54.1-2990).   I discussed this provision in the context of a Virginia futility dispute here. 

A bill filed this week (HB 2068) would amend this statute by making the above section subject to the following:  "For purposes of this section, medical treatment shall not be deemed medically or ethically inappropriate on the basis of a view (i) that values extending the life of a younger, nondisabled individual who is not terminally ill more than extending the life of an elderly, disabled, or terminally ill individual or (ii) different from that of the patient, or the individual authorized to act on the patient's behalf, on the tradeoff between extending the length of the patient's life and the risk of disability."

NY Palliative Care Information Act: Effective on Feb. 9

While Medicare coverage for advance care planning in the annual wellness visit has evaporated, state law mandates for advance care planning are proceeding.  Notably, in August 2010, New York Governor Patterson signed the Palliative Care Information Act. The bill provided that the law would go into effect in 180 days.  The bill (S.4498 A.7617) has been codified at N.Y. Pub. Health 2997-C. Here is the full text of the law:

 Palliative  care patient information. 1. Definitions. As
  used in this section, the  following  terms  shall  have  the  following
  meanings, unless the context clearly requires otherwise:
    (a)  "Appropriate"  means consistent with applicable legal, health and
  professional standards; the patient's clinical and other circumstances;
  and the patient's reasonably known wishes and beliefs.
    (b)  "Attending  health  care practitioner" means a physician or nurse
  practitioner who has primary responsibility for the care  and  treatment
  of  the  patient.  Where  more  than one physician or nurse practitioner
  share that responsibility, each of them has  responsibility under  this
  section, unless they agree to assign that responsibility to one of them.
    (c)   "Palliative care" means  health  care  treatment,  including
  interdisciplinary end-of-life care, and consultation with  patients  and
  family  members, to prevent or relieve pain and suffering and to enhance
  the patient's quality of life, including  hospice  care  under  article
  forty of this chapter.
    (d)  "Terminal  illness or condition" means an illness or condition
  which can reasonably be expected  to cause death within six  months,
  whether or not treatment is provided.
    2. 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  but not
  limited to: the  range  of  options  appropriate  to  the  patient;  the
  prognosis, risks and benefits of the various options; and the patient's
  legal rights to comprehensive pain and symptom management at the end  of
  life.  The information and counseling may be provided orally or in
  writing. Where the patient lacks capacity to reasonably  understand  and
  make  informed choices relating to palliative care, the attending health
  care practitioner shall provide information and  counseling  under  this
  section to a person with authority to make health care decisions for the
  patient.  The attending health care practitioner  may  arrange  for
  information and counseling under this section to be provided by  another
  professionally qualified individual.
    3.  Where the attending  health care practitioner is not willing to
  provide the patient with information and counseling under this section,
  he  or  she shall arrange for another physician or nurse practitioner to
  do so, or shall refer or transfer the patient to  another physician  or
  nurse practitioner willing to do so.

Medical Futility -- Film Clip 1

For the past few years, I have been building a library of film and music clips relating to medical futility and to end-of-life medicine.  The idea was to build them into presentations to liven them with humor or drama.  But they have rarely seemed appropriate.  So, I think I'll just blog them and post them to YouTube.  Here is the first one:

Futility at the Virginia Neurological Society

On February 5th, at the annual meeting of the Virginia Neurological Society, Dr. Thomas Pellegrino is presenting "Medical Futility: Does the Emperor Have Any Clothes?"  Temptingly, the meeting is at the Homestead, where I proposed to my wife over 13 years ago.

Ariel Sharon - PVS for 5 Years, But Now Responsive?

The personal doctor of former Israeli PM Ariel Sharon said that he "responds to pinches and opens his eyes when spoken to."  This is, of course, consistent with the vegetative state Sharon has been in for over five years.  These very basic stimuli reactions do not indicate consciousness, awareness, or purposeful action.  Still, such reports surely foster false hope for many surrogates with family members in similar states.

Physician Disciplined for Recommending Palliative Care

In his 2010 book, No Good Deed, Massachusetts psychiatrist Lewis Cohen recounts (page 188) that a nephrologist colleague of his is currently undergoing hospital disciplinary procedures and has been suspended from clinical duties following two cases in which she wanted to stop dialysis but was opposed by the patient's adult children.  "[T]he nephrologist spoke to the relatives and explained that the patient was dying, continuing dialysis was futile . . . ."  This is not unilateral withdrawal.  It is not even aggressive badgering or manipulation.  I sure hope there is more to the story.   

One Hour Video Overview of Medical Futility Disputes

I have been posting audio from some recent conferences (ASBH, ATS, ICCEC) on my website here and here.  I have now started loading some videos.  I divided a recent one hour presentation into six YouTube video posts.

Repeal of the Patient Self Determination Act

With all the talk both about repealing healthcare reform legislation (or at least cutting off its funding) and about the backlash to Medicare coverage of voluntary advance care planning, it would not surprise me to see a bill aimed at repealing the Patient Self Determination Act.  



After all, the PSDA actually requires hospitals and other facilities to inquire about and engage in education concerning advance care planning.  If the states want to promote or require advance care planning, that is one thing.  But if the federal government wants to be agnostic and treat advance care planning like abortion and assisted suicide (not allowing federal funds), then why not at least be consistent?  Repeal all the federal law that promotes advance care planning.  The PSDA has been pretty unsuccessful in any case.

Death Panels Win Again - CMS to Reduce Advance Care Planning Coverage

Physicians have always been permitted to engage in advance care planning with their Medicare patients.  Indeed, they have been, and will continue to be able to, get reimbursed for such discussion (under several office visit CPT codes).  And ACP is still covered under the initial "Welcome to Medicare" visit.  But otherwise the reimbursement level is too low to incentivize this wanted and needed planning.  





Higher reimbursement was specifically covered under an early version of PPACA.  It was then specifically covered under Medicare regulations.  But now, the New York Times reports that coverage has been removed from the regulations too.

"Help, They Want Everything" - Futility at the American Geriatrics Society

At the annual meeting of the American Geriatrics Society in Washington DC in May 2011:

HELP, THEY WANT EVERYTHING!

Developed by the Ethics Committee and sponsored by the Ethnogeriatrics Committee.

Moderator: Elizabeth K. Vig, MD, MPH

Learning Objectives: (1) identify factors that contribute to patients and their family members requesting 'everything' be done; (2) review and practice strategies for communicating with patients and families who want 'everything'; and (3) reflect on how beliefs and values may influence how clinicians respond to certain cases.

Reasons for Wanting 'Everything'

Elizabeth K. Vig, MD, MPH



Case Discussion - Disagreement among Family Members

Karen S. Feldt, PhD, ARNP, GNP



Case Discussion - Ethnic/Cultural Influences

Fred Kobylarz, MD, MPH and Ramona Rhodes, MD, MPH



Case Discussion - Futility

Sandra Sanchez-Reilly, MD, AGSF



Case Discussion - Family Wants 'Everything' Done while They Wait for a Miracle

Joseph W. Shega, MD



Case Discussion - Disagreement between Family Members

Caroline A. Vitale, MD