Families and End–of–Life Treatment Decisions An International Perspective

Just published, Families and End–of–Life Treatment Decisions: An International Perspective, analyzes the current status and role of family and other surrogates at the end of life.  



Numerous European national laws are compared and bench-marked against other practices, in North and South America, in Africa and in some Asian countries.  The chapters include:

• Loved ones’ role in end of life care: evaluating deontological and utilitarian ethical arguments


• The individual nature of death


• The dying person and the triangle of loved ones : for a relational approach to the end of life


• A physician’s view on the complexity of end of life care and the role of family and close friends


• Family and loved ones in end of life care in French law : does end of life shape and define the “family”?


• The central role in Germany of the “Angehorige” in enhancing patient autonomy at the end of life


• The preeminence of relationships in the legal recognition of the rights of the patient’s loved ones in Switzerland


• End-of-life medical treatment: a limited role for loved ones to enhance patient autonomy


• A role for loved ones to promote patient autonomy at the end of life


• The broad definition of “relatives” in end of life care in Spain


• The central power of physicians over end of life matters in Italy


• Patient rights at the end of life and the role of family and loved ones in Greek law


• Ethical and legal debates on a dignified end-of-life and the role of the family in Hungary


• Loved ones and end-of-life medical care: the particular approach of Tunisian law


• Family, “loved ones” and medicalized end-of-life decision making in Senegal


• Multiculturalism and religion in end-of-life care in Lebanon


• Loved ones and end-of-life medical care in Turkish law


• End-of-life medical care: towards recognition of patient autonomy in Brazil


• “Loved ones” and end-of-life medical treatment in Chile


• Surrogate decision-making role in end of life care: the case of the USA


• The family and end-of-life medical treatment in Japan


• Families and end-of-life treatment decisions: an international study

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Renewing the Conversation: Respecting Patients’ Wishes and Advance Care Planning

This week, there was a good hearing before the Senate Special Committee on Aging, titled "Renewing the Conversation: Respecting Patients’ Wishes and Advance Care Planning."  



A video of the hearing is available here.  Witnesses included:  

• James Towey, Founder, Aging with Dignity and President, Ave Maria University


• Harriet Warshaw, Executive Director, The Conversation Project


• Amy Vandenbroucke, Executive Director, National Physician Orders for Life-Sustaining Treatment Paradigm Task Force


• Gloria Ramsey, RN, Associate Professor, Uniformed Services University of the Health Sciences

Unfortunately, there has been no movement on H.R. 1173, the Personalize Your Care Act.  I recently praised this bill in "The New Patient Self Determination Act."

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New Informed Consent - from Videos to Video Games

There has been a lot of coverage about how videos can significantly improve patient understanding and informed consent.  



Perhaps even better might be the more interactive nature of video games.  A guest post over at PalliMed reviews a new way to "experience" cancer.

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Liverpool Care Pathway - Problems

The Liverpool Care Pathway (LCP) is a checklist devised to help hospital doctors and nurses assist patients to a humane, dignified and pain-free end.  It basically transfers the hospice model of care into other care settings. 



But clinicians at the British Medical Association's Annual Representatives Meeting in Edinburgh admitted that there are some serious problems with the LCP.  (Daily Mail) (Telegraph)  



The problems identified include:

• Relatives unaware family members were on the LCP


• Senior clinicians unaware patients were on the LCP


• Patients left on the LCP for weeks without any review or re-evaluation.


• Financial incentives offered to hospitals to get people on the pathway - a system put in place to reward good practice – risks a tick-box culture where clinicians may be tempted to feel that the job is done simply by getting the patient on to the LCP

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Do-It-Yourself Funerals

Of the nearly 2.5 million people who will die in the United States this year, 99 percent will travel through a funeral home. That’s a big problem, according to Joshua Slocum of the Funeral Consumers Alliance, a political lobbying group based in Burlington, Vermont. 



In this mini-documentary by Vocativ, we see how the $11 billion “death-care” industry is taking advantage of bereaved consumers at a time when they are most vulnerable—even going so far as to purposely mislead people into thinking embalming is mandated by law (it isn’t).  The Funeral Consumers Alliance’s goal is to change the way Americans deal with the dead, and it promotes do-it-yourself funerals that consist of a cardboard box, family, and little else. 

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Mandela v. Mediclinic Heart Hospital

Nelson Mandela, 94, has been in Pretoria's Mediclinic Heart Hospital, since June 8.  But, earlier this week, his frail health took a turn for the worse.  (Wall Street Journal)

It is unclear exactly what treatment recommendation the hospital is making to the Mandela family.  But it seems that a plan for "comfort measures only" will not be accepted.  His eldest daughter Makaziwe Mandelane spoke out to say he is "at peace" and "only God knows the end".  



She explained:  "In our culture, the Tembu culture, that I know, the African culture that I know you never release the person unless the person has told you please my children, my family release me. . . .  My dad hasn’t said that to us. So these people who want to talk about, you know, release him, he hasn’t said we should release him and we haven’t come to the end yet. It is only God who knows the end."  (UK Sun)

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Guidance for Healthcare Ethics Committees (paperback)

This book provides definitive, comprehensive education for members of healthcare ethics committees who find themselves confronted with ethically challenging medical situations.



Chapters are written by nationally and internationally-recognized experts in bioethics and include learning objectives, case presentations, and discussion questions to facilitate committee conversation. This is essential reading for every member of a healthcare ethics committee.

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Force Feeding of Patients Is Rampant

U.S. Senators and the most distinguished bioethicists in the world have been calling on the military to stop force feeding the Guantanamo Bay prisoners.  But where is the outcry over the force feeding of patients, U.S. citizens, right here in the United States every day?  



The Vancouver Sun is running (follow-up column here) a compelling story about Margot Bentley, about how providers refuse to respect patient rights to VSED (voluntarily stop eating and drinking), and feed them against their will.

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Hospice in Prison

Maine State Prison Hospice Room

The Main Public Broadcasting Network is doing a 3-part series on end-of-life care in prison.  Part one is available here.  



With a prison population in the United States of 1.6 million and many of these inmates getting older, end-of-life care options are a pressing issue. Just as prisoners, unlike the rest of us, have a Constitutional right to healthcare, they also have a Constitutional right to appropriate end-of-life care.  

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Ontario Appeal Court Rules No Consent Required for DNAR Order (Cefarelli v. Hamilton Health)

This week, the Court of Appeal for Ontario issued an opinion that, at first glance, seems to directly contradict its June 2011 ruling in Cuthbertson v. Rasouli (the appeal of which is still pending before the Supreme Court of Canada).  But Cefarelli v. Hamilton Health Services is consistent with Rasouli, which held that consent is always required to stop life-sustaining treatment.  

The Cefarelli case concerns end-of-life decisions affecting Antonio Costantini.  Clinicians apparently placed a "no-CPR order" without consent.  A family member sued.  The trial court ruled that consent was not required, and that the appellant was effectively making a request to impose CPR treatment which carries no possibility of medical benefit, but would only inflict harm.  The appellate court affirmed.  

The Court explained that clinicians did not need consent for the "no CPR order," because "the November 2012 treatment plan (which was consented to) gives the responsible physician discretion regarding which components of cardiopulmonary resuscitation are to be used and which are not."  Therefore, the "no CPR order" was "simply one available to the doctor within that plan.  It cannot be said to be a withdrawal of treatment from that treatment plan.  No question therefore arises of the need for consent."

        

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How to Reduce Medical Overuse

In a recent JAMA
Internal Medicine article, Allison Lipitz-Snyderman and Peter B. Bach identify three types of
overuse of healthcare services:

1. Benefits small relative to risks


2. Benefits small relative to costs


3. Service unwanted

 The first two require especially difficult value-laden choices and tradeoffs.
 What dollar cost per QALY is too much?  When are the benefits too
low?  

But the third type of overuse seems far less controversial.  If
the patient does not even want the healthcare service, then it almost always
wrong to provide it.  While hardly a complete solution, I have recently demonstrated how
the law is starting to play a greater role in mitigating unwanted treatment.
   

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Institute of Medicine Committee on Transforming End-of-Life Care - July Meeting

The Institute of Medicine Committee on Transforming End-of-Life Care will hold its 3rd meeting on July 22 and July 23, 2013, at Texas Children's Hospital.

The topic for this meeting is "Aging, Health Care Workforce, Health Services, Coverage, and Access, Public Health, Quality and Patient Safety."  There will be a public session on July 23 featuring panel sessions on ethics and spirituality. An opportunity will also be available for the public to comment on issues relating to end-of-life care that the committee will address in its work.  



Registration and a draft agenda will be available soon.  Interested parties may continue to submit to EOL@nas.edu any materials they believe the committee should consider in its work. 

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Quality Measurements, Payment, and the Law: Disincentives to Physician-Patient Discussions of End-of-Life Care

“Quality Measurements, Payment, and the Law:
Disincentives to Physician-Patient Discussions
of End-of-Life Care” is the title of a new article by Missouri health lawyer Harvey M. Tettlebaum in the
Journal of Health & Life Sciences Law.  Here is the
abstract:

With passage of the Affordable Care Act, the
government is playing a dramatically increasing role in not only payment
for healthcare but also the standards by which care is delivered.
Therefore, it is important that the disincentives to patient discussions
of end-of-life care in the laws and regulations, and the mechanisms used
to enforce both, be well understood to avoid in the future what has
occurred in the past.

Here is the table of contents:

• Introduction                            


• Shortcomings of the Patient Self-Determination
  Act


• Impediments to End-of-Life Discussions


• The culture of life and death           


• Physicians                              


• Payment structures and systems          


• Hospice audits and enforcement          


• Other regulatory standards and administrative
  enforcement


• Emergency Medical Treatment and Active Labor Act


• Need for Culture Change                 


• The Patient Protection and Affordable Care Act


• Conclusion

                                

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The New Patient Self-Determination Act

My latest Legal Briefing column, “The New Patient Self-Determination
Act,” has just been published in The Journal of Clinical Ethics 24(2).  

In this Article, I cover recent legal
developments involving the Patient Self-Determination Act (PSDA).  Enacted in
the wake of the U.S. Supreme Court’s Cruzan decision in 1990, the PSDA remains
a seminal event in the development of U.S. bioethics public policy.  But the
PSDA has long been criticized as inadequate and ineffective. Finally, recent
legislative and regulatory changes promise to revitalize and rejuvenate it.  I categorize new legal developments concerning
the PSDA into the following eight sections:

    1.  Background and History

    2.  Rules and Requirements

    3.  Criticism and Challenges

    4.  Failed Efforts to Amend
the PSDA

    5.  Personalize Your Care Act
of 2013

    6.  New Regulations

    7.  New Regulatory Guidance

    8.  Expanded Enforcement

Much of the rest of the Summer 2013 issue also concerns end-of-life and
surrogate decision making, so here is the complete TOC:

Why Careproviders May Conclude that Treating a Patient Is Futile

Edmund G. Howe

Repetitive Foreign Body Ingestion: Ethical Considerations

Sarah Lytle, Susan J. Stagno, and Barb Daly 

The Intensity and Frequency of Moral Distress Among Different
Healthcare Disciplines

Susan Houston, Mark A. Casanova, Marygrace Leveille, Kathryn L.
Schmidt,

Sunni A. Barnes, Kelli R. Trungale, and Robert L. Fine 

“He Got His Last Wishes”: Ways of Knowing a Loved One’s End-of-Life
Preferences and Whether Those Preferences Were Honored

Angelina R. Wittich, Beverly Rosa Williams, F. Amos Bailey, Lesa L.
Woodby, and

Kathryn L. Burgio 

Making Decisions for Hospitalized Older Adults: Ethical Factors
Considered by Family Surrogates

Jenna Fritsch, Sandra Petronio, Paul R. Helft, and Alexia M. Torke 

The Threshold Moment: Ethical Tensions Surrounding Decision Making on
Tracheostomy for Patients in the Intensive Care Unit

Arvind Venkat 

A Response to Dubler’s Commentary on “Surmounting Elusive Barriers: The
Case for Bioethics Mediation”

Edward J. Bergman 

 The Art of the Chart Note in Clinical Ethics Consultation and Bioethics
Mediation: Conveying Information that Can Be Understood and Evaluated

Nancy Neveloff Dubler 

 Legal Briefing: The New Patient Self-Determination Act

Thaddeus Mason Pope

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Clinicians May Not Administer Life-Sustaining Treatment Without Consent: Civil, Criminal, and Disciplinary Sanctions

My 84-page article, "Clinicians May Not Administer Life-Sustaining Treatment Without Consent: Civil, Criminal, and Disciplinary Sanctions," has finally been published at Journal of Health & Biomedical Law 2013; 9(2):213-296.  A PDF is available here.  Here is the abstract:  



Both medical and legal commentators contend that there is little legal risk for administering life-sustaining treatment without consent. In this Article, I argue that this perception is inaccurate. First, it is based on an outdated data set, primarily damages cases from the 1990s. More recent plaintiffs have been comparatively more successful in establishing civil liability. Second, the published assessments focus on too-limited data set. Even if the reviewed cases were not outdated, a focus limited to civil liability would still be too narrow. Legal sanctions have also included licensure discipline and other administrative sanctions. In short, the legal risks of providing unwanted life-sustaining treatment are not as rare, meager, and inconsequential as often depicted. In fact, sanctions for administering unwanted treatment are significant and growing.

In Section II, I quickly summarize the now well-established legal bases for the right to refuse life-sustaining treatment. In Section III, I demonstrate that clinicians regularly breach their duty to respect patients’ right to refuse. In addition to reviewing the literature, I summarize key statistical measures establishing the size and scope of the problem. Fortunately, the reports are not all bad. The prevalence of unwanted life-sustaining treatment may be shrinking with the increasing implementation of POLST. Still, the problem remains significant. 

In Section III, I identify twelve leading factors that cause clinicians to administer unwanted life-sustaining treatment: (a) inadequate advance care planning, (b) clinician misinterpretation of and confusion on advance directives, (c) uncertain validity of advance directives (d) uncertain application of advance directives, (e) demanding and conflicting surrogates, (f) uncertain status of the surrogate decision maker, (g) decision making capacity; (h) inadequate informed consent, (i) negligent maintenance of medical records, (j) vitalistic philosophy of medicine, (k) conscience-based objections, and (l) financial incentives.

In Section IV, I establish that clinicians think administering unwanted life-sustaining treatment entails little legal risk. This perception is based on three main factors. First, clinicians are often able to obtain injunctions and guardianships authorizing treatment. Second, the salience of unsuccessful cases for damages makes it appear that administering unwanted treatment entails little legal risk. Third, this perception is bolstered by the visibility of four legal obstacles to liability: (a) the rejection of the “wrongful living” cause of action, (b) the emergency exception to the consent requirement, (c) safe harbor immunity under healthcare decisions acts, and (d) conscience clauses.

Finally, in Section V, I demonstrate that this “no risk,” “low risk” perception is wrong. I show how health care providers have been increasingly subject to sanctions for administering unwanted life-sustaining treatment. I review nine theories of civil liability: (a) battery, (b) informed consent, (c) negligence, (d) intentional infliction of emotional distress, (e) negligent infliction of emotional distress, (f) breach of contract, (g) health care decisions statutes, (h) POLST statutes, (i) Section 1983, and (j) the False Claims Act. I also review administrative sanctions and criminal liability. Furthermore, not only have providers been sanctioned but also with recent increased patient protections, they are likely to be increasingly sanctioned. 

The right to refuse life-sustaining treatment has been established for decades. But, as with many principles in bioethics, like the related doctrine of informed consent, there remains a wide chasm between legal and ethical principles, on the one hand, and the reality of clinical practice, on the other. In contrast to other commentators, I have aimed to establish that the prospect for enforcement and protection of patient rights is not as dismal as commentators often depict. In fact, both private litigants and government regulators have been imposing sanctions that are increasingly severe and frequent.

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British Medical Bodies Revising Guidance on DNAR Orders

The Guardian reports that, amid concerns over whether DNAR orders are being properly implemented, the British GMC and BMA are revising guidance to doctors and nurses on decisions about whether or not to resuscitate patients.  



There have been quite a few recent cases in which clinician wrote a DNAR order without patient or family consent (something they are allowed to do) but also without even informing the patient or family.  The new guidance should be available by the end of 2013.

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Medical Futility Remains Major Reason for Ethics Consults

Andrew G. Shuman and colleagues at Memorial Sloan-Kettering Cancer Center have published a new study in the Journal of Oncology Practice, reviewing and describing clinical ethics consultations (2007 to 2011) at two National Cancer Institute–designated comprehensive cancer centers.



They found that the most common primary issues leading to ethics consultation were:

• Code status and advance directives (25%)


• Surrogate decision making (17%)


• Medical futility (13%)

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New Publication: Legal, Medical, and Ethical Issues in Minnesota End-of-Life Care

In November, the Hamline University Health Law Institute and the Hamline Law Review hosted a symposium, titled "Legal, Medical, and Ethical Issues in Minnesota End-of-Life Care."  



The Law Review is publishing a volume of articles on the Symposium theme.  I prepared this introduction to the special issue.  The printed volume should be available late next month.

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"Staying Alive" vs. "Another One Bites the Dust"

The universal algorithm for adult CPR requires compression of at least 2 inches and a compression rate at least 100 per minute.  How fast is 100 compressions per minute?  



I was surprised to learn that many clinicians use Queen's Another One Bites the Dust to maintain the best rhythm for performing CPR.  Sure, it might have 100 beats per minute.  But is that the message the clinician should have in her head when trying to resuscitate someone?







Surely more appropriate is the Bee Gees' 103-beat-per-minute Staying Alive.  







Other songs to help you maintain the right compression rate include:

• Lay Your Hands on Me (Bon Jovi)


• Kickstart My Heart (Motley Crue)


• Dancing Queen (Abba)


• Ain’t No Mountain High Enough (Diana Ross)


• Thank God I’m a Country Boy (John Denver)


• Man In The Mirror (Michael Jackson)

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New Demos Report Analyzes Inequalities in End-of-Life Care

Demos UK has just published a new report, Ways and Means.



Many receive end-of-life care of varying quality, often characterized by delays, a lack of information and an insufficient say in their end of life journey.  



Ways and Means highlights several factors that contribute to these kinds of inequalities at the end of life. It reveals that the likelihood of what can be described as a ‘good death’ – one where the wishes of the patient and their family are met – can be significantly affected by: (1) where people live, (2) their ethnicity, and (3) previous contact with social care. But the most critical factor is early diagnosis and timely initiation of support.



Ways and Means argues that tackling these inequalities requires placing an emphasis on training, communication and integration across health and social care. It recommends free social care at end of life be adopted as soon as possible, while ensuring that health and care professionals, who have a central role in providing well coordinated end of life care, are equipped and properly supported to talk about death. It concludes that a misplaced sense of delicacy must not prevent us from responding to people’s needs.

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Appropriate Attack on Terri Schiavo Life & Hope Network

I missed Pittsburgh Post-Gazette columnist Sally Kalson's article earlier this spring, titled "We Spend Too Much in Dying."

Here are two excerpts from the beginning and end of her article:

If Medicaid is really as unsustainable as Republican governors insist, then the Terri Schiavo Life & Hope Network is not helping matters. . . .

Health care rationing sounds evil, but the fact is we're already doing it, based on who's covered and who isn't. Our challenge is finding a way to provide the best care at the lowest cost to the most people by the most efficient means.

But when I think of Terri Schiavo's brother, and the nation's Republican governors, and my cousin, I have to wonder if we're up to it.

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Minnesota Appeals Court to Hear Assisted Suicide Case against Final Exit Network

In April, Dakota County, Minnesota Judge Karen Asphaug ruled that Minnesota's assisted suicide statute was unconstitutionally over-broad as applied in a criminal case against Final Exit Network and some of its members involved in the 2007 death of Doreen Dunn.  The district attorney appealed that ruling.  



The Court of Appeals denied a petition to stay proceedings pending the outcome of the related Minnesota Supreme Court case, State v. Melcher-Dinkel, which also concerns the constitutionality of the assisted suicide statute.  Oral argument in that case was just last month, on May 13.  Yesterday, the Supreme Court denied a petition for accelerated review.



Consequently, oral argument before the Court of Appeals remains scheduled for 10:40 a.m., on July 10, 2013, in Judicial Center, Courtroom 200.  In re: State of Minnesota, Appellant, vs. Final Exit Network, Inc., Respondent (A13-0565), Lawrence Deems Egbert, Respondent (A13-0564), Roberta L. Massey, Respondent (A13-0563).

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Public Health Paternalism Blog

I have started a new blog on Public Health Paternalism:  HealthPaternalism.com.  



Medical Futility will continue to cover developments in end-of-life law, ethics, and policy.  Health Paternalism, in contrast, will cover the balancing of individual liberty and the promotion of public health.  Paradigm examples are helmet laws and sugary food bans.  But coverage will be range from specific public policy proposals to deeper Millian questions of normative jurisprudence.



I have quite a bit of great content.  But it will take me a few weeks to polish the visuals of the blog, because I am moving from Blogger to WordPress for this one.

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ECMO - The Next Medical Futility Battleground?

The use of ECMO has been growing.  In contrast to dialysis, CPR, and mechanical ventilation; clinicians can usually more confidently refuse to offer or provide ECMO when they deem it medically inappropriate.  



Yet, one wonder whether expanding use will result in "indication creep."  CPR and dialysis were originally intended for only certain populations.  Yet, they are now regularly offered to 100-year-old patients with numerous serious comorbidities.  Et tu ECMO?

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Nevada Enacts POLST Statute

Nevada has just become the
latest state to legislatively adopt POLST.  Last week, Nevada Governor
Brian Sandoval signed A.B. 344.

In April, Indiana also enacted a POLST statute.  Before that, 18 states already had POLST statutes.  So, if my math is right, 20 states now have POLST statutes.  Other states have implemented POLST through regulations or through clinical consensus.  

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POLST Authorizes Unilateral DNAR Orders

In both Maryland and Vermont, a clinician can write a POLST order indicating "no CPR" even without patient or surrogate consent.  Regulations in both states authorize the entry of a "do not attempt resuscitation" order on a POLST on the basis that CPR would be "futile" or "medically ineffective."  This "no consent" option is clearly printed right on the POLST form.



California law similarly provides that while "a health care provider shall treat an individual in accordance with a POLST form," that requirement "does not apply if the POLST form requires medically ineffective health care or health care contrary to generally accepted health care standards applicable to the health care provider or institution."  But unlike Maryland and Vermont, the "no consent" option is not printed on the POLST form itself. 



Nevertheless, this has not prevented California providers from utilizing this option.  For example, Dominican Hospital in Santa Cruz, rewrote a patient's POLST contrary to his prior expressed wishes, apparently on the ground of medical ineffectiveness.  Of course, since the patient was unbefriended / unrepresented, there was little risk that such a decision would be challenged.  It is unclear that clinicians would rewrite a POLST on grounds of ineffectiveness in the face of surrogate opposition.   



Many states have long allowed clinicians to unilaterally refuse (surrogate-, agent-, or surrogate-requested) treatment that is "medically ineffective" or that is "contrary to generally accepted health care standards."  But since there is significant uncertainty about when those standards are satisfied, clinicians have generally declined to avail themselves of such safe harbors.  It is unclear, yet, whether analogous POLST safe harbors will be any more effective.

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Clinicians Accede to Surrogate Decisions

It is well documented that clinicians frequently cave-in to surrogate demands to continue non-beneficial treatment.  What I had not focused on is a finding by sociologist Susan Shapiro. 



Clinicians also accede to surrogate requests to stop life-sustaining treatment even when those surrogates lack legal authority to make such requests.  Here is an excerpt from a summary of Shapiro's research:

Shapiro found many reasons why families were so rarely denied the option of withdrawing life support. Often, she said, “patients meet the requisite conditions of the law, or their medical condition is devastating—even if not precisely what is delineated in the law.” Additionally, Shapiro noted, “many physicians don’t know the law or don’t know the difference between a power of attorney and a default surrogate.” Finally, Shapiro found, “physicians don’t insist on seeing the advance directive document and follow whatever the family says is in the document,” nor will they stand in the way of the “wrenching decisions made by grieving families.”

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New Book Review of WRONG MEDICINE

Wrong Medicine: Doctors, Patients, and Futile Medicine remains the best book-length treatment of medical futility and non-beneficial treatment.



Last year, I reviewed the second edition in the American Journal of Bioethics.  This week, Robert C. Young posted a new book review of Wrong Medicine to Oncology Times.   

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Edmund Pellegrino Has Died

Edmund Pellegrino, one of the world's most distinguished bioethicists, has died at 93.  He would have turned 94 next week.  



I was luck to intersect with him at Georgetown University and then later at the President's Council on Bioethics.

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New Hastings Center Guidelines on Medical Futility

The new Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life do not have very much useful guidance on medical futility disputes.



Page 14 provides:  The right to refuse treatment does not establish a right to demand any and all treatment a patient or surrogate chooses.  The goal of respect for persons should not be reduced to "do whatever the patient wants" or "do whatever the surrogate thinks the patient would have wanted."



But any details on this proposition focus only on 

• "the misuse of resources that have no prospect of benefiting a patient." (page 16)  


• "treatment burdens without possibility of benefit" (page 57)


• "treatment that cannot provide physiological benefit" (page 57)

Those truly "futile" situations are the extremely rare "easy" cases.  Where are the Guidelines on the hard cases that actually arise in ICUs?



On the other hand, the Guidelines do usefully recommend "time-limited trials" (page 55).  They recommend avoiding the phrase "doing everything" (page 56).  And they contain many other good tips on communication and establishing/reviewing goals of care that should help avoid conflict.

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A Nudge in the Right Direction with a Stick the Size of CMS: Physician-Patient Communication at the End of Life

Saint Louis University School of Law student Katherine B. Ledden has posted (here too) "A Nudge in the Right Direction with a Stick the Size of CMS: Physician-Patient Communication at the End of Life."  



This article appears in the Saint Louis University Journal of Health Law and Policy, Vol. 6, No. 2 (2013).  Here is the abstract:

   

This paper examines the physician-patient relationship at the end of life and recommends a change to the hospital Medicare Conditions of Participation to remedy many palliative care failures. Most individuals will rely on palliative care at some point in their lives, likely in the form of hospice at the end of life. However, the promise palliative care provides to patients and caregivers has been broken. Perverse Medicare hospice benefits have led to a rise in a for-profit hospice industry, questionable quality, and either very long or very short stays. Additional end-of-life breakdowns occur in the areas of physician-patient communication and pain management.



Two states, California and New York, have passed right-to-know statutes requiring physicians to speak with patients about end of life treatment. Other states are considering following suit and the Uniform Law Commission has considered, and rejected, a right-to-know uniform act proposal. However, questions remain about the enforceability of the acts and after which state’s statue the uniform act might be modeled. This paper suggests that a federal solution would provide a sweeping and uniform solution to the problem of physician-patient communication. A federal legislative solution seems unlikely given the burden of passing a bill in Congress. Instead, CMS should consider revising the hospital Conditions of Participation to encourage physicians to speak with their patients about end-of-life treatment.

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Open Forum on AMA Code of Medical Ethics

The AMA Council on Ethical and Judicial Affairs (CEJA) will conduct an Open Forum on Monday, June 17, 2013, from 9:30 a.m. to 11 a.m. at the Hyatt Regency Chicago, Columbus C-D.



The Open Forum is open to all AMA members, interested non-members, other guests, and the press.  Open Forum attendees are invited to introduce emerging ethical issues that may warrant attention from CEJA and inclusion in the AMA "Code of Medical Ethics."

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Aid-in-Dying: Is Terminal Illness a Prerequisite?

Dr. Philippe Freiburghaus prescribed sodium pentobarbital to an 89-year-old man suffering unbearable pain who had tried to commit suicide.  But Swiss prosecutors said the doctor had “crossed the line” by failing to follow the legal regulations.  “In prescribing this drug he did not respect the ethical directives, namely the presence of an incurable illness and a short life expectancy."



But just a few weeks ago, the European Court for Human Rights held that Swiss law violated the Convention, because it lacked "comprehensive and clear guidelines on whether and under which circumstances . . . someone not suffering from a terminal illness should be granted the ability to acquire a lethal dose of medication."



To be clear, the ECHR said that it is up to Swiss law to determine if a terminal illness is required.  But authorities must make the rules more certain one way or the other.  Perhaps Swiss authorities will develop an alternative safeguard that will permit them to dispense with the "terminal illness" requirement.

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Hospital Ethics Committees: Coordinating across Institutions

I was pleased to read that these two New York hospitals coordinate some of their ethics committee activities.  The ethics committees of St. Elizabeth Medical Center and Faxton St. Luke’s Healthcare "meet jointly every month to discuss ethical issues, which are similar at both hospitals."  



I am looking for more examples of multi-institutional ethics committees.  I want to bolster my argument that this is the best way to balance responsiveness and fairness for issues like decision making for the unbefriended and adjudicating end-of-life conflicts.  

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Rodger William Kelly Had Sex with Unconscious Neighbor to "Save Her Life"

Rodger William Kelly was charged with the rape of his unconscious neighbor.  But he claims that he only had sex with her in an attempt "to save her life."



Kelley told Utah police that he found his 29-year-old neighbor unconscious and began to have sex with her because "he was trying to save her life."  "He said he did place [his penis] inside of her to try and get her temperature up," police said in a probable cause statement filed in 5th District Court.  (Int'l Bus. Times)



Utah has a Good Samaritan Act that provides "a person who renders emergency care at or near the scene of, or during an emergency . . . is not liable . . . ."   But the Act shields only civil, not criminal, penalties.  Moreover, for immunity, the defendant must render the care "in good faith" and cannot be "grossly negligent."  It seems unlikely Kelley satisfies those conditions.

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Lana Barnes, Surrogate in Futility Dispute, Convicted of Medicaid Fraud

Lana Barnes was the surrogate in the most famous medical futility case in Minnesota.  



She insisted on non-indicated treatment at many Minneapolis area hospitals before one hospital challenged her in court and had her replaced as her husband's substitute decision maker.  



Last week, Lana Barnes was convicted of Medicaid fraud in connection with her husband's care.

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Man Oppressed by the Triumphs of Medicine

I enjoyed "The River" by James Guglielmi, yesterday, at the Art Institute of Chicago.  You see 4 women alongside the expanse of blue water, hemmed in by a monolithic concrete riverbank with an industrial landscape in the distance.  There is a vivid contrast between the natural and man-made landscapes.  One critic noted that Gugliemi's work suggests "the theme of man oppressed by his own great triumphs."  

This resonates with the all-too-common theme of the dying patient in the ICU "oppressed" by the triumphs of medical science.  In both the Gugliemi scene and in the ICU, we have developed some awesome technology.  But we too often let it get out of control and detract from a natural and enjoyable life.

 

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African Americans - Medical Mistrust Persists

African Americans still can’t get over the Tuskegee Experiment.  



Four decades after the infamous study on syphilis’ impact on black men ended in rural Alabama, mistrust of medical science resonates in the lack of African American participants in potentially life-saving clinical trials and studies.  (Charlotte Post)  



We see this same distrust in low advance directive completion rates and higher rates of end-of-life treatment conflict.

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Medicare Data Access for Transparency and Accountability Act (Medicare DATA Act)

I recently blogged about two new databases that add transparency to Medicare and Medicaid information.  First, ProPublica launched Nursing Home Inspect.  Second, the Association of Healthcare Journalists launched a hospital inspection database.  



These two databases may soon be joined by another.  U.S. Senators Chuck Grassley, R-Iowa, and Ron Wyden, D-Ore., say that despite a recent federal ruling affirming that Medicare data should be available to the public and federal efforts to make some data publicly available, much more still needs to be done to make Medicare claims data fully transparent. 



“Medicare is a $500 billion program with billions of dollars going out in error each year,” Grassley said. “The bad actors get bigger and bolder all the time. They stay out of law enforcement’s reach all too often. It’s time to try new things. More transparency about billing and payments increases public understanding of where tax dollars go and foster accountability. The bad actors might be dissuaded if they knew their actions were subject to the light of day.”



“Medicare claims data transparency seems to be moving in the right direction, but we’re just not there yet,” Wyden said. “Aggregated data and statistical averages can hide differences between providers and settings, and don’t allow Americans to truly compare their health care choices. In order to enjoy the benefits of full transparency, Medicare claims data should be readily available to the public.”



Grassley and Wyden plan to reintroduce the Medicare Data Access for Transparency and Accountability Act (Medicare DATA Act). The bill would require the Secretary of Health and Human Services to issue regulations to make available a searchable Medicare payment database that the public can access at no cost. The bill also clarifies that data on Medicare payments to physicians and suppliers do not fall under a Freedom of Information Act exemption.

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Wisconsin Bishops - Now and at the Hour of Our Death

The Wisconsin’s Catholic bishops just released the third edition of their pastoral letter on end of life health care decision-making and advance care planning, Now and at the Hour of Our Death. 

The letter voices the bishops’ concern and compassion for those facing critical health care decisions, and shares a moral and ethical framework for making such decisions.  Fortunately, the letter does not go far as the radical Catholic Medical Association white paper about which I will be writing more soon.

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