Rep. Blumenauer: Ensuring Patient Choice for End of Life Care

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Hospital Stops Life Support after Nonpayment

Indian newspapers (for example, here and here) are reporting that doctors at a government hospital in Jalandhar allegedly refused to provide life support system to a three-day-old girl — who later died — after her father failed to pay a paltry sum of Rs 200 for treatment.

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Outpatient Palliative Care

Here is another great story by Mercury News writer Lisa Krieger.  She covers the now well-known benefits of palliative care, the reimbursement incentive obstacles to its much-needed expansion, and a great new "outpatient palliative care" program in the bay area.  



 

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Futility Case at Stollery’s Children’s Hospital in Alberta

A 28-month-old child lies in a hospital on life
support, with brain injuries so severe that doctors believe she’ll never recover.
 Her parents are charged with aggravated assault, criminal negligence
causing bodily harm, and failing to provide the necessities of life. They
refuse to discontinue life support for their daughter, citing their religious
beliefs. 

The Edmonton Journal describes the dispute as a
"jurisdictional mess" — with no one, it seems, empowered to act in
the child’s best interests.  “You would think for something like this
there would be clear jurisprudence, clear policy. But there just isn't, because
it implicates so many values,” says Tim Caulfield, a professor of law and
bioethics at the University of Alberta. “There is no clarity on exactly what is
futile care, and when health-care providers can make a unilateral decision to
discontinue life support.”  Hopefully, a Supreme Court decision in Rasouli will provide some much-needed guidance.

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The Death(s) of Usher's Stepson Kile Glover

The confusion between brain death and death is probably not going to dissipate anytime soon.  For example, multiple national media are reporting the "passing away" of Usher's 11-year-old stepson Kile Glover "after being taken off life support."  But they also note that Kile already "was pronounced dead over a week ago after being involved in a jet-ski accident."  




Worse, matters seem to have been further confused by neurologist Dr. Brent Masel, national director of the Brain Injury Association of America and medical director of the Transitional Learning Center of Galveston, Texas.  Dr. Masel stated: "When someone is declared brain dead, it's not that their brain is not functioning at all."  "There are two components to the brain, the cerebrum, which is the thinking part and the brain stem, which narrows and becomes the spinal cord."  The stem is the automatic part, which controls respiration and heart rate and someone can technically live without a functioning cerebrum, which is not unusual in such injuries. "The thinking part of the brain is no longer functioning and all the patient has functioning is the brain stem."  




I hope that Dr. Masel was misquoted.  Brain death is statutorily defined as the "irreversible cessation of all functions of the brain, including the brainstem."

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Removing Your Own Ventilator is Not Suicide

The LA Times reports that Palm Springs, CA
police arrested Bill Bentinck earlier this month.  He walked into the room
of his terminally ill wife.  She had disconnected her oxygen supply.
 Bentinck ased her if she was sure.
 She was.  He and his wife then held hands and professed their love
for each other. After a while, she stopped breathing.  "It was a very
peaceful death," Bentinck said. "She didn't struggle at all. She just
went to sleep."  

Bentinck then called
hospice a few hours later.  Even though his wife apparently had a POLST,
he waited to ensure that there would be no resuscitation attempt.  Hospice
called the coroner.  And the coroner called the police.  The police
arrested Bentinck.  But he was later released.

California Probate Code 4653 (and other California law),
like the law in most states, is very clear that withholding or withdrawing
healthcare – even life-sustaining healthcare – does not constitute “mercy
killing, assisted suicide, or euthanasia.” 

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Public Health Perspective on End of Life Care

There is an urgent need for public health
to adopt dying and palliative care as a major public health priority, for
instance in national health strategies, and for palliative care to adopt a
public health perspective to improve circumstances of dying at a population
level.

Worldwide, more than 50 million people die each year
and it is estimated on the basis of the conditions leading to death that up to
60% of them could benefit from some form of palliative care.  It is a public health challenge to ensure that
these people can access good palliative or end-of-life care.  Pursuing good population health essentially
also implies striving for a 'good enough death' and a good quality of care at
the end of life.  Safeguarding a good
quality of the end of life for patient populations for whom it is appropriate
requires a public health approach. 

In
most developed countries ageing populations that increasingly die from chronic
diseases after a prolonged -often degenerative- dying trajectory make up the
public health challenges for palliative care. The very large baby boom
generation will soon reach old age and can be expected to pose strong demands
regarding the circumstances and care at their end of life. Only by applying a
public health approach to palliative care (instead of individual patient
perspectives), can societies successfully help to organize and plan end-of-life
care in accordance with these aspirations.

A
Public Health Perspective on End of Life Care (Oxford University Press) presents a synthesis and
overview of relevant research and empirical data on the end of life that can
bear a basis for a more systematic 'public health of the end of life'. The book
focuses on population health, rather than clinical interventions or other
aspects of individual health, and discusses studies using different
methodologies (not only epidemiological research). The focus is on the quality
of the end-of-life of populations, in particular from social sciences,
environmental sciences, and humanities perspectives.

PART I:
INTRODUCTION

1: J Cohen & L
Deliens: Applying a public health perspective in end-of-life care

PART II: CLINICAL AND SOCIAL CONTEXT OF
DEATH AND DYING

2: ST Tang &
C-H Chen: Place of death and end-of-life care

3: I Higginson:
Circumstances of death and dying

4: A Van der Heide
& J Rietjens: End-of-life decisions

5: K Fassbender:
Economic and health related consequences of individuals caring for terminally
ill cancer patients in Canada

PART III: END-OF-LIFE CARE: PROVISION,
ACCESS, AND CHARACTERISTICS

6: Wentlandt K
& C Zimmerman: Aggressive treatment and palliative care at the end of life

7: G Grande:
Access to palliative care

8: L Emanuel:
Communication between patient and caregiver

PART IV: END-OF-LIFE CARE SETTINGS

9: L Van den
Block: Palliative care in primary care

10: JT Van der
Steen, MR Helton, PD Sloane & MW Ribbe: Palliative care in institutional
long-term care settings

11: AS Kelley, DJ
Fischberg & RS Morrison: Palliative care in hospitals

PART V: INEQUALITIES AT THE END OF LIFE:
UNDERSERVED GROUPS

12: J
Addington-Hall & K Hunt: Non-cancer patients

13: K Brazil:
Palliative care for the older adult

14: K Hexem &
K Feudtner: A public health framework for pediatric palliative and hospice care

15: I
Tuffrey-Wijne, A Wagemans & L Curfs: End-of-life care for patients with
intellectual disabilities

16: D Wilson &
D Mohankumar: End-of-life care for people who live in rural or remote areas
versus those who live in urban areas

17: J Koffman:
Social inequalities at the end of life

PART VI: END-OF-LIFE CARE POLICIES

18: X
Gómez-Batiste, J Espinosa, MP Gonzalez Olmedo, M Martínez-Muñoz, C Lasmarias, A
Novellas, E Beas, J Porta, J Trelis, C Calle & J Stjernsward: Design,
implementation, and evaluation of palliative care programs and services with a
public health who perspective

19: J Downing
& R Harding: Public health policy regarding end-of-life care in sub-Saharan
Africa

20: D Clark:
Palliative care in the global context: understanding policies to support
end-of-life care

21: A Kellehear:
The importance of family carers in end-of-life care: a public health approach

PART VII: Conclusion

22: L Deliens
& J Cohen: Conclusions

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Bentham and Others with Controversial Wills

Here is an interesting and entertaining summary of some famous people with unusual and interesting wills.  

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Expiration Date (Theater Performance)

I am pleased that the Hamline Health Law Institute is sponsoring a performance of "Expiration Date" in conjunction with its November 8-9, 2012 Symposium on Legal, Medical, and Ethical Issues in Minnesota End-of-Life Care.  Here is a brief clip:   

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Honoring Choices Minnesota - Annual Meeting

Honoring Choices Minnesota is an effort of the Twin Cities Medical Society and its foundation.  Today, about 90 professionals leading the effort will gather in Minneapolis for an annual meeting to gauge where they are and what remains to be done. (Star Tribune)  Attendees will:

• Share the progress and findings of local advance care planning programs. 


• Identify best practices for advance care planning through reports from clinics, hospitals, community and other sites. 


• Discover new perspectives from guest speakers, faith communities and multi-cultural leaders.


• Network with others who are skilled in implementing advance care planning conversations in Minnesota.

Unfortunately, I am at an institute in Colorado.  I wish that I could be in Minnesota today for this.  Not only is this an area that I research and write in, but also I am hosting a conference on a related topic on November 8-9, 2012 in Saint Paul.

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Junior Scholars in Bioethics Workshop 2013

The Center for Bioethics, Health and Society at Wake Forest University has announced its second Junior Scholars in Bioethics Workshop from March 21-23, 2013.




The Workshop gives junior (untenured) faculty working in bioethics an opportunity to present works-in-progress to scholars in bioethics and related fields.  Commentators will provide constructive feedback to presenters with the goal of fostering scholarship in bioethics.  Works-in-progress will be read in advance by a group of experienced scholars in bioethics and related fields. Each author will present the paper during the workshop. The assigned reviewers will provide oral feedback and then the rest of the audience will be invited to participate in offering feedback and asking questions.  The expectation is that this discussion will assist scholars in revising their papers prior to submitting them for publication.


Junior faculty working in bioethics in the United States are invited to submit abstracts/summaries of 500-750 words of the proposed paper along with a curriculum vitae (by November 1, 2012).  Papers should be works-in-progress that have not already been accepted for publication and that will not be submitted for publication until after the workshop at Wake Forest University. A committee of scholars will select three papers for presentation at the Junior Scholars in Bioethics Workshop.  Authors will be required to submit a full draft of the paper in advance of the workshop to allow peer reviewers sufficient time to read the papers and prepare their comments.

The Center for Bioethics, Health and Society will reimburse advanced purchase coach airfare or mileage and provide lodging and meals for scholars whose works-in-progress are selected for presentation.  It is expected the scholars will be present to participate in the discussion of all papers.

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Physician's Unilateral Vent Withdrawal Triggers Homicide INvestigation

A physician who was charged with unilaterally withdrawing mechanical ventilator from an elderly patient was largely exonerated by the medical registration board.  But now, according to Australia's ABC News, the allegations have been referred to Queensland's Crime and Misconduct Commission (CMC).  The CMC has appointed a former Supreme Court judge to examine what it calls a series of allegations and has referred material to the homicide squad.

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"Comply with Treatment Plan or Lose Your POA"

This is an interesting take on the Ontario CCB from the family's perspective.  Marilyn Nelson's husband, Arthur, had a stroke and was admitted to hospital.  Physician to patient's wife: "Comply with the treatment plan or lose your power of attorney. One of us must go, and it's going to be you."  

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'Fix the Debt' Campaign

"Fix the Debt"
is a project of the nonpartisan Committee
for a Responsible Federal Budget, focused on tackling the national debt
with a comprehensive plan  It is launching next Tuesday, July 17.

The Fix
the Debt campaign is bringing together business leaders, political leaders, and
Americans of all kinds to find a bipartisan solution that reverses our descent
into debt and strengthens our economy.  The campaign will educate and
engage the public to promote an informed discussion and prompt action in the
best interests of the nation.

Fiscal
Commission co-chairs Erskine Bowles and Alan Simpson recently discussed the
campaign on CNBC with Warren Buffett as well as
the implications of the “fiscal cliff” at the end of the year.  An updated analysis from CRFB lays out the
impact of the fiscal cliff, with a new appendix that specifically
examines the effect on Medicare spending.  The campaign will lay
the groundwork to replace the fiscal cliff with a smart, gradual debt reduction
plan.

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Economics Institute for Law Professors

I am heading off, this weekend, to the 28th Economics Institute for Law Professors.  




The goal of the Institute is to help participants enhance their understanding of economics and broaden their analytical tools in order to introduce greater economic sophistication and policy relevance to their professional work.  Alumni routinely credit the Institute with providing creative insights into research and teaching, and with facilitating collegial associations.  




I was, at first, a little concerned that the conference hotel was the inspiration for Stephen King's 1977 novel The Shining.  But I was pleased to see that Estes Park, Colorado will be substantially cooler than the upper Midwest.  

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The Disabled: Coercion to Hasten Death?

For decades, commentators have expressed concern that, where the option is available, the disabled will be coerced to hasten their own deaths.  It is one of the key objections to the legalization of physician aid-in-dying.  Indeed, the risks of coercion are real.  And they exist not only with respect to PAID but also in other contexts, as famously illustrated by the quadriplegic right-to-die cases (Bouvia, McAfee..) of the 1980s.  The risks of this coercion are powerfully stated in a new article by William J. Peace in the Hastings Center Report and in commentary at the Bioethics Forum Blog.

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Western Michigan Medical Humanities Conference

Submissions for Western Michigan's Medical Humanities Conference close over the weekend, if you're interested in submitting.

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When May a U.S. Clinician Refuse Non-beneficial Treatment?

In most U.S. jurisdictions the legal right of a clinician to refuse a patient/surrogate request for life-sustaining treatment can be represented by the following categorical syllogism:

Major premise:  Healthcare providers may (without sanction) unilaterally refuse to initiate or continue requested interventions outside the standard of care.

Minor premise:  Intervention x is outside the standard of care.

Conclusion:  Therefore, the provider may withhold or withdraw x, even without patient or surrogate consent.

Both the law and the logic of this syllogism are "valid."  But it is unclear whether they are "sound."  U.S. providers have a really tough time establishing the truth of the minor premise with respect to any given x.  Consequently, the statutory "permission" granted in most states (i.e. the major premise) ends up being illusory.  The boundaries of the safe harbor are just too fuzzy to give the requisite legal certainty and comfort.  

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Proposal to Amend the Patient Self Determination Act

The American Bar Association is meeting in early August.  One resolution for the House of Delegates to consider is Resolution 106A.





COMMISSION ON LAW AND AGING

SECTION OF FAMILY LAW

SENIOR LAWYERS DIVISION

GENERAL PRACTICE, SOLO AND SMALL FIRM DIVISION



REPORT TO THE HOUSE OF DELEGATES



RESOLUTION



RESOLVED, That the American Bar Association urges Congress to amend the Patient-Self Determination Act (PSDA) provisions of the Medicare and Medicaid law to require that:



1. Every patient or patient’s authorized representative be given an opportunity to discuss issues relating to advance care planning with an appropriately trained professional within a reasonable time after the patient’s admission to a facility covered by the PSDA;



2. Health insurance exchanges developed pursuant to the Patient Protection and Affordable Care Act of 2010 be required under the PSDA to provide advance care planning information and resource options for follow-up assistance; and



3. In the absence of a validly executed advance directive, any clear, undisputed expression of a person’s wishes with respect to health care should be honored.



FURTHER RESOLVED, That the American Bar Association urges Congress and the United States Department of Health and Human Services to require the annual Medicare wellness examination, or other periodic doctor-patient interactions, to include both an opportunity to engage in and assistance with advance care planning for health decisions.

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Factors Important to Patients' Quality of Life at the End of Life

A new study in the Archives of Internal Medicine identifies the "Factors Important to Patients' Quality of Life at the End of Life."  Factors tending to negatively affect QOL include:

• Intensive care unit stay, −5.61 


• Death in the hospital, −3.03 


• Worry or anxiousness, −0.39 


• Chemotherapy during the last week of life, −3.46


• Feeding tube during the last week of life, −3.54 

Factors tending to positively affect QOL include:

• Pastoral care in the hospital or clinic, 1.60 


• Therapeutic alliance with physician, 1.45 


• Religious activities prior to cancer diagnosis, 0.66 

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Death Cafe

An Ohio woman is opening the country's first ever Death Cafe, "a safe place for people to meet and talk about their fears, concerns, and opinions."

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The Most Expensive Medicare Patient

The Wall Street Journal has a great article on the transplants and the many months of critical care provided to Scott Crawford, the fifth costliest Medicare beneficiary in 2009.  His care that year totaled $2.7 million.  




But even independent of the cost, the case triggered all the usual medical futility issues:  nurse moral distress, an ethics consult...  For a public story is is unusually richly detailed.

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ICCEC Conference: March 2013 in Munich

The 9th International Conference on Clinical Ethics and Consultation (ICCEC) will be from March 14-16, 2013 in Munich, Germany.  I enjoyed earlier iterations of this conference in Croatia and Portland.  This year's local hosts intend to strengthen the bridge between clinical medicine and ethics by providing a forum for the exchange of experience and discussions between clinicians, ethicists and ethics consultants.  In particular, they plan to present “role model consultations” based on real clinical cases from intensive care, dementia care, and oncology.  In addition, plenary sessions will focus on the needs for ethics consultation from the perspective of clinicians and connect them to the experience of ethics consultants. Abstracts are due September 15, 2012.

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Overcoming Death Denial

Last Saturday morning in Chicago, I listened to a compelling presentation by "spiritual activist, teacher, author and ceremonialist" Stephen Jenkinson on "The Skill of Brokenheartedness: Euthanasia, Palliative Care and Power."  




One point that Jenkinson made is that we are a death denying culture . . . and this will not change.  He recognized that might not be a welcome message among hundreds of attendees at a Compassion & Choices conference.  But I wonder about the accuracy of Jenkinson's prediction.  




In 1978, Princeton sociologist Viviana Zelizer that "the financial evaluation of a man's life introduced by the life insurance industry was initially rejected by many as a profanation which transforms the sacred event of death into a vulgar commodity."  Yet, today, the life insurance industry has long been legitimated as a new form of ritual with which to face death.




Zelizer identifies a plethora of factors explaining the shift.  But it seems that similar factors could obtain at the beginning of the 21st century.  In short, it seems at least possible to transform death from a over-medicalized ritual back to an accepted part of life.  Like Ira Byock, I hope that baby boomers will “take back” the end of life in the same way they took charge of the beginning by pushing for the natural childbirth movement and efforts to bring fathers into the delivery room.

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British End-of-Life Quality Survey

The British Office for National Statistics (ONS) has released the National Bereavement Survey 2011.  Among other things, the data show:

• Only 50 per cent of hospital nurses showed dignity and respect towards patients at the end of their lives, compared to 80 per cent of hospice nurses 


• And just 30 per cent of people who died in hospital were given a choice about where they died, whereas the figure was double that for those in a hospice

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Michigan Peace of Mind Registry

Joanna Lax at Dykema has a great
post about the new Michigan Peace of Mind Registry.  I have excerpted a bit of her excellent post
below.

What is the new database?

On June 18, 2012, Michigan
Governor, Rick Snyder, signed legislation establishing the “Peace of Mind
Registry”—a cutting-edge, statewide electronic database for storing
individuals’ health care advance directives and organ donation documents.
Individuals in Michigan will be among the first in the nation  to be able
to electronically upload or send via snail mail, their signed advance directive
and organ donation documents to an accessible  centralized Registry.
Database registration is free and voluntary. To those who do register, the
Peace of Mind Registry will send a receipt and a wallet-sized card documenting
the registration. If an individual should change his/her mind about either the
advance directive or the organ donation, the Peace of Mind Registry will also
include forms to revoke a previous registration.

What is the significance of the Peace of Mind
Registry for health care providers?

The Peace of Mind Registry will
enable hospitals, nursing homes, physicians and other health care providers to
search for advance directives in a centralized location no matter where the
patient lives in Michigan. It will also allow providers to download advance
directives directly into their own electronic medical record system. Curiously,
health care providers are not mandated by the new legislation to check the
Peace of Mind Registry when a new patient is admitted. However, since the early
1990s health care providers have had an obligation under their Medicare
provider agreements to ask all newly admitted inpatients whether they have an
advance directive, and to take reasonable steps to obtain a copy if one exists.

What best practices can providers adopt now?

Once the Peace of Mind Registry
is operational in Michigan, health care providers should search the database for
all new admits, and to obtain copies of filed advance directives. Note that
providers will still need to confirm that the filed registered directive is the
individual’s most current expression of wishes. It is certainly possible for an
individual to write a second—or third or fourth—advance directive, or to
totally revoke all prior documents, but fail to register these later documents
or actions. Once the Peace of Mind Registry is operational, hospitals, nursing
homes and other health care providers should also update their policies and
procedures regarding advance directives to incorporate the anticipated benefits
of the new data repository.

For those outside Michigan, consider using a private (non-governmental) registry.  The largest one in the United States is DocuBank, based in Philadelphia.

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Foundational works of scholarship in health law

The American Society of Law, Medicine & Ethics, the AALS Section of Law, Medicine & Health Care, and the American Health Lawyers Association are seeking nominations of foundational works of scholarship in health law, very broadly defined, published in English before December 31, 2010.



They intend to publish an edited volume in an academic press.  The first round of nominations will close on December 31, 2012.  Nominations must be accompanied by a brief description, not to exceed 300 words, of the importance of the scholarly work, addressed to:

Ted Hutchinson, Executive Director, American Society of Law, Medicine & Ethics, 765 Commonwealth Avenue, Boston, MA  02445  thutchinson@aslme.org

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Cervantes v. Rady Children's Hospital

On Friday, I blogged about the case of Cervantes
v. Rady Children's Hospital.  Two-year-old
Zody Cervantes had meningitis and suffered a seizure in an emergency room
nearly two months ago. He was then transferred to Rady Children’s
Hospital where he’s being treated for a severe brain injury.  

Last week,
Zody's mom Laura Nieves said doctors visited her twice and told her they
planned to take the boy off life support. Both times Nieves told the doctors
that she didn’t approve of the decision:  "I'm just letting you know
right now that I don't give you permission, I don't give you consent to take my
son off life support."  She has even
posted signs near her son's bed stating the family's position.  Nieves said a hospital staff member told her:  "We don't need your consent."

NBC News reports that Nieves says her son has been making progress,
responding to touch and voices speaking to him.  Hospital administration denied
planning to remove Zody.  

Ted Mazer, M.D. of the San Diego County
Medical Society said there's no legal precedent requiring consent from parents
to take children off of life support.  As I have written, this is not entirely accurate.

 

View more videos at: http://nbcsandiego.com.

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Duluth, MN End-of-Life Talk on July 8

Speaker Janet Conn, President of Compassion and Choices ofMinnesota will speak on the broad picture of public policy, the future
direction of advocacy and the current public discussion regarding care for the
elderly, family decision-making for health care, hospice services and decisions
about end of life. A question and answer period will follow. 

Admission
Information: Free

Time:
 July 8th at 2:00 pm

Location:

Duluth-Superior Friends Meeting House

1802 East First Street

Duluth, MN 55801

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Health Law at SEALS

The final agenda for the SEALS conference in Amelia Island, Florida, later this month, is now available here.  There are, especially relative to all the other areas of law that could be included, quite a few sessions on health law topics.  I look forward to seeing you there.  I will be coming to SEALS straight off two weeks in Colorado at the Economics Institute for Law Professors.

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Legality of U.S. Physician Aid-in-Dying

It struck
me, yesterday, that much of the legal work of Compassion
& Choices is not about changing
the law but more about clarifying that
the existing law (already) does not prohibit physician aid-in-dying.  Here
are four examples:

1.    
In Hawaii and New Mexico, (as earlier in Connecticut) the argument
is basically that any criminal prohibition on "assisted suicide" does
not extend to a physician's lethal prescription for a competent terminally ill
patient.  That conduct does not constitute "assisted suicide" as
that term is defined under the criminal code.

2.    
In Montana, Baxter already clarified, in 2009,
that PAD does not violate public policy and would not constitute a crime if the
patient consents.  But clinicians want more clarity: guidelines, explicit
safe harbor immunity.  Current statutory efforts are aimed at elucidating
what is already legal (but arguably not yet very practically effective).

3.    
The California Right to Know End of Life Options Act merely
codifies what was already a legal informed consent duty.
 A California physician must disclose all information that a reasonable
patient in the patient's situation would find material.  A terminally ill
patient's end-of-life options surely constitute significant information for
that patient.  Yet, again, that does not mean the law is useless.  It
serves an important clarifying and highlighting function.

    

4.    
VSED is legal in all U.S. jurisdictions, at
least for a contemporaneous request from a capacitated patient.  But the
widespread perception (especially among long term care providers) is that
assisting VSED may trigger criminal and regulatory sanctions.  So, again,
the focus is on clarifying that the law does not actually prohibit (and even
requires) assisting VSED.

Poisoning
or dehydrating another person is normally a crime.  But when (1) a
clinician does this (2) for a terminally ill patient (3) with that patient's consent,
then it is not a crime.  This reminds me of a powerful scene in Frost/Nixon when
Nixon says "when the President does it, that means it's not illegal."

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