Not really news anymore, but yet another new poll suggests Americans are in denial about death. Only 40% have a will (for property).
Four Big Obstacles to Rational Health Policy
A few weeks ago, the Institute of Medicine
In Chapter One, the IOM notes four obstacles to more rational health policy. These are readily adaptable to clinical medicine and to end-of-life bioethics in particular.
- The rescue imperative (or the rule of rescue). People are more likely to feel emotionally moved and motivated to act in the case of specific individual misfortune (e.g., the plight of baby X highlighted on the evening news), but far less inclined to respond to bad news conveyed in terms of statistical lives (Gostin, 2004; Hadorn, 1991;Hemenway, 2010);
- The technological imperative. Cutting-edge biomedical technologies have far greater appeal (and historically, government funding) than population-based interventions, including public policies (Fuchs, 1998;Gillick, 2007;Koenig, 1988);
- The visibility imperative. Activities that occur behind the scenes, such as public health practice, remain invisible and are taken for granted in the public sphere until and unless a crisis arises, such as an influenza pandemic or radiation threats. The other contributor to the invisibility of public health is the fact that the fruits of its labors are often far in the future (Hemenway, 2010); and
- The individualism imperative. American culture generally values individualism, heavily favoring personal rights over public goods (Gostin, 2004).
When is postponing removal of the ventilator after the diagnosis of brain death justifiable?
The "Ask the Ethicist" column in the latest Lahey Clinic Medical Ethics Journal argues that postponing removal of the ventilator after the diagnosis of brain death is often justifiable. As I argued a few years ago, this seems to be a common position.
The Prospects of Immortality
Robert Ettinger, the father of the cryonics movement, died on Saturday.
Adherents of cryonics believe that future developments in medical technology will allow their frozen bodies to be brought back to life. (Daily Maverick; Telegraph). The idea is that the dead might be "cured" by the doctors of the future. The Cryonics Institute promises it is "Your Last Best Chance For Life--and Your Family's." It has nearly 1000 members, 103 now in cryostasis + 78 pets.
When Are You Ready to Pull the Plug against the Wishes of the Family?
On his blog, End of Life - Thoughts from an MD, Dr. Jim deMaine describes a recent case in which a conflicted family could not reach a treatment decision. So, the patient with metastatic cancer spent three weeks in the ICU. Her heart then stopped "and the nurses, much against their wishes, had to perform fruitless CPR. Mary thus died in a traumatic way, ribs broken from chest compressions, suffering the kind of technological imperative that's sarcastically referred to by the staff as 'medical last rites.'" Dr. deMaine also asks how the case might have reached a better resolution, for example, through unilateral withdrawal.
More Concern about Catholic Hospital Mergers
As with other mergers in other parts of the country, the Louisville Courier-Journal reports significant concern that that Catholic doctrine could override patients' end-of-life wishes under a pending merger of three Kentucky hospitals (University Hospital, Jewish Hospital & St. Mary's HealthCare, and St. Joseph Health System). Catholic Health Initiatives would own 70% of the combined operations, and the merged hospitals will follow Catholic health care directives.
Wise on Rasouli v. Sunnybrook
Ontario attorney Gary Wise blogged about Rasouli v. Sunnybrook here. He describes the decision as "a good example of the Court of Appeal taking pains to not rule on a contentious and divisive issue they would prefer to leave to the Legislature." That reminds me of Betancourt v. Trinitas Hospital.
Legal Commentary on Rasouli v. Sunnybrook
Rahool Agarwal, an attorney in the Toronto office of the global law firm Norton Rose, has posted a brief commentary on the recent Ontario Court of Appeal decision in Rasouli v Sunnybrook Health Sciences Centre. He notes several issues that remain open and unsettled:
- "[P]hysicians may be left guessing as to whether their treatment proposal is closer to the chemotherapy example, where consent would not be required, or the situation in Rasouli."
- "[A]bsent from the court’s decision is any acknowledgment that applying to the Consent and Capacity Board is not always desirable."
- "[B]ecause the court viewed the Act as providing a complete answer to the parties’ dispute, it did not review the Canadian common law regarding consent . . . ."
- "[W]hether the Charter applies to the actions and decisions of doctors has not yet been adequately analyzed."
ICU Head Faces Criminal Charges for Hastening Death
Dr. EE, the head of the intensive care unit at Rashid Hospital in Dubai
Mr. Mohammed, a quadriplegic, was in a critical condition and needed continuous monitoring because of chronic heart complications. Prosecutors say that two days before Mr. Mohammed died, Dr. EE issued orders that he was not be resuscitated if he suffered a heart attack. Dr. EE also allegedly removed an oxygen monitor and other life support apparatus. And he ordered an increase in the dosage of morphine and a decrease in the quantity of oxygen below the necessary limit for the ICU patients. Euthanasia is illegal under UAE federal law, and doctors are required to revive patients regardless of the patients’ wishes. It is also forbidden under Sharia. The trial will reconvene on August 7. (The National; Khaleej Times; Gulf News)
Lawsuit for Disregarding DNR Order
The Denver Post reports on a lawsuit by Daniel Self against a number of individual and institutional healthcare providers. According to his Complaint, filed in U.S. District Court for the District of Colorado, Mr. Self completed a "CPR Directive" in January 2009. In April 2009, correctional officers and EMTs resuscitated Mr. Self in contravention of this directive.
While Mr. Self's lead claims are constitutional, he also alleges claims for negligent supervision and battery. While this case is special given its prison context, expect to see more lawsuits for wrongful resuscitation.
DNAR Orders: Problems, Causes, Solutions
In the Journal of General Internal Medicine, Jacqueline Yuen and colleagues review the problems with DNAR orders, the causes of those problems, and some solutions.
The problems:
- DNAR discussions occur too infrequently.
- DNAR discussions occur too late.
- DNAR discussions fails to satisfy criteria for informed consent.
- Healthcare professions inappropriately extrapolate DNAR orders to other treatment decisions.
The causes of the problems:
- Medical culture that values the technological imperative.
- Inadequate hospital policies on DNAR discussion standards.
- Insufficient training of physicians in communication skills.
- Payment system that rewards volume and intensity of care.
Nursing Home: Sanctions for Over-treatment and Under-treatment
In the latest Archives of Internal Medicine, Phillip Bale describes his 99-year-old nursing home patient with sever dementia in whose feet he noticed some gangrenous changes. Recognizing that the patient had "enjoyed almost no quality of life for many years," the patient's POAs agreed that "only supportive comfort measures should be implemented." But when Dr. Bale later went on vacation, the nursing home, recently-sanctioned for the death of another patient, started sending Dr. Bale's patient to the local hospital for wound care treatment. The administrators "felt they could not risk another investigation claiming that they could have done more for the patient." Apparently, though, the administrators felt they could risk a battery claim, False Claims Act exposure, and citation for violation of patient right COPs.
New Jersey End-of-Life CLE
On Thursday, September 8, a half-day CLE on end-of-life will be offered at the New Jersey Law Center in New Brunswick
Tentative Program Agenda: | ||
9:10 | Introduction - Margaret J. Davino, Esq. - Role of lawyers in helping to prevent problems - Problems with end of life decision-making | |
9:40 | Overview of end of life decision-making and problems involved, including Dartmouth Atlas Study and | |
10:40 | Need for change in the law: the Betancourt case - William P. Isele, Esq. | |
11:10 | Break | |
11:25 | Overview of the case law regarding EOL decision-making: Conroy, Jobes, Quinlan - Cathyanne A. Pisciotta, Esq. | |
12:00 | Statutory law in and POLST in the future - William P. Isele, Esq. | |
12:30 | Case Study - Panel | |
1:00 | Adjournment | |
Miracle survivor Kimberly McNeill
Public Health Professionals More Focused on Justice than Physicians
Joshua Greene and colleagues recruited 84 medical doctors and 69 public health professionals for some interesting morality experiments. One hypothetical was “To save the lives of several patients who need brief access to life support, you need to pull the plug on a more gravely ill patient and redistribute the limited supply of machines in a hospital.” (ScienceNOW)
There was a wide gap between physicians and administrators. Nearly half of public health professionals were willing to pull the plug on a patient's life support to save others, compared with less than a third of doctors. Not terribly surprising results. Public health professionals, after all, are focused on the good of the community. Physicians, in contrast, are focused on the good of the individual patient.
Medicare and End-of-Life Costs
Dudley Clendinen has a great essay in last Sunday's New York Times about living with ALS. He continues to have a valuable life. But, as his condition deteriorates, Clendinen does not plan to use all available medical technology to prolong his biological life as long as possible. He explains that would just leave him "a conscious but motionless, mute, withered, incontinent mummy of my former self." Instead, Clendinen explains that "when I can’t tie my bow tie, tell a funny story, walk my dog, talk with Whitney, kiss someone special, or tap out lines like this — I’ll know that Life is over. It’s time to be gone.”
Yesterday, David Brooks commended Clendinen for the way he defines what life is: "Life is not just breathing and existing as a self-enclosed skin bag. It’s doing the activities with others you were put on earth to do.” Consistent survey results show that a majority of Americans share this definition of life. Unfortunately, many of these individuals do not get informed consent adequate to assure that they receive treatment consistent with their definition of life.
What about those Americans who do not share Clendinen’s definition of life? Increasingly, we are likely to see less public and private coverage for treatment that does not further Clendinen’s definition of life. (It is, as Schneiderman & Jecker show, a defensible definition.) And we are likely to see fewer physicians providing aggressive medicine that does not further Clendinen’s definition of life. In short, Clendinen’s chosen path, already the one desired by most Americans, will soon become the only one available.
History of the Growth of Patient Power
Michael Millenson has a new article in the Journal of Participatory Medicine, titled “Spock, Feminists, and the Fight for Participatory Medicine: a History.” It is, as Richard Smith at the BMJ Blog observes, "a fascinating and very readable account of how patient power has steadily increased in the United States."
The Science of Compassion: Future Directions in End-of-Life and Palliative Care
On August 10 - 12, 2011, the National Institute of Nursing Research presents The Science of Compassion: Future Directions in End-of-Life and Palliative Care, at the Hyatt Regency in Bethesda , Maryland
Overall Summit
- Examine the current status of end-of-life and palliative care research, practice and policy
- Propose strategies to overcome barriers and ensure scientific and methodological rigor in research
- Delineate new action items that galvanize progress in this vital area of science
- Envision and map pathways to ensure a future rich with scientific endeavor and achievements
August 10, 2011
7:00 PM - 9:00 PM
The Ethics of Science at the End of Life: A Town Hall Discussion
Opening Remarks: Patricia A. Grady
Mistress of Ceremonies: Marie T. Hilliard
Panel Moderator: Susan Dentzer
Panelists: Joseph J. Fins; Nancy Berlinger; Karla FC Holloway
The Summit will kick off with a Town Hall event which will bring together, for the first time, individuals from a variety of scientific and practice backgrounds, members of the public with advanced illness and their caregivers, significant others, and policy makers or those driving the scientific research agenda. Highlights include opening remarks by NINR Director, Patricia A. Grady, an exploration of key issues in end-of-life and palliative care research by invited scientific leaders and an opportunity to engage in a public discussion and interactive dialogue.
August 11, 2011
8:00 AM - 8:30 AM
Continental Breakfast
8:00 AM - 8:30 AM
Dyad Programs - Meet & Greet
Junior researchers, individuals with life limiting illnesses and caregivers accepted into one of the Dyad Programs will have an opportunity to meet their assigned Mentor
8:30 AM - 9:30 AM
Introduction and Keynote Address
Keynote Speaker: Dr. Ira Byock
9:45 AM - 11:35 AM
Plenary Session 1: Identifying our Strengths
Dr. Christina Miaskowski
Dr. Randy Curtis
Dr. Pamela Hinds
Dr. Jennifer Temel
Discussant: TBD
11:35 AM - 1:00 PM
Working Lunch: Parents and Clinicians as Partners in Research
Box lunches will be made available by the Hyatt for $15 and will include a sandwich, chips and cookie. Please select this option if you wish to order a box lunch and stay for this engaging session.
Lunch Speakers
Dianne Gray
Advocate/Speaker/Author/CEO
Cynda Hylton Rushton PhD,RN, FAAN
Professor, Nursing and Pediatrics
Core Faculty, Berman Institute of Bioethics
Program Director, Harriet Lane
1:00 PM - 2:50 PM
Plenary Session 2: Marshalling our Resources
Dr. Jeff Dusek
Dr. Joan Teno
Dr. Susan Hickman
Dr. Jaime Von Roen
Discussant: Dr. Chris Feudtner
Breakout Sessions
3:15 PM - 4:45 PM
Aging and Quality of Life
Moderator: Christine Richie
3:15 PM - 4:45 PM
Bio-behavioral Issues in End-of-Life and Palliative Care
Moderator: Dr. Michael Antoni
3:15 PM - 4:45 PM
Communication and Advance Care Planning
Moderator: Dr. Deborah Waldrup
3:15 PM - 4:45 PM
Complex Comorbidities in End-of-Life and Palliative Care
Moderator: Dr. James Tulsky
3:15 PM - 4:45 PM
End-of-Life and Palliative Care and the Caregiver
Moderator: Dr. Deborah McGuire
3:15 PM - 4:45 PM
Methodological Issues in End-of-Life and Palliative Care
Moderator: Dr. Amy Abernethy
3:15 PM - 4:45 PM
Pain and Symptom Management
Moderator: Dr. Diana Wilkie
3:15 PM - 4:45 PM
Pediatrics/Perinatal Issues
Moderator: Dr. Joanne Youngblut
3:15 PM - 4:45 PM
Psychosocial, Cultural and Spiritual Aspects of End-of-Life Care
Moderator: Dr. Bronwynne Evans
3:15 PM - 4:45 PM
The Era of E: The Use of New Technologies in EOLPC
Moderator: Dr. Michael Green
5:00 PM - 7:00 PM
Evening Reception and Poster Session
Poster abstracts addressing a variety of themes in end-of-life and palliative care research will be presented at a poster session in conjunction with the Summit
August 12, 2011
7:30 AM - 8:00 AM
Continental Breakfast
8:30 AM - 11:00 AM
Introduction and Reports from Break-out Groups
11:00 AM - 11:30 AM
Lunch (on your own)
Please check this box if you are interested in purchasing a boxed lunch from the Hyatt for $15. This will include a sandwich, chips and cookie.
11:30 AM - 1:20 PM
Plenary Session 3: Mobilizing for the Future
Dr. Amy Abernethy
Dr. Marie Bakitas
Dr. Richard Payne
Dr. Jean Kutner
Discussant: June Lunney
1:20 PM - 2:00 PM
Closing Session: Keynote and Closing Remarks
Closing Keynote Speaker: Dr. Randy Curtis
Health Law and Bioethics Conference (July 2012)
New Case - Lee Ah Cheo
Not terribly far from the futility conference in Brisbane and the Gold Coast, a futility dispute was playing out in Singapore. The family of Lee Ah Cheo, 64, called the police after, they claimed, the hospital did not follow their wishes to keep her on assisted ventilation. (AsiaOne)
Improving End-of-Life Care in New Jersey
More Problems with Surrogates at the End of Life
Much of the overly-aggressive medicine and many of the conflicts at the end-of-life are due to the fact that a surrogate, rather than the patient herself, makes the treatment decision. A plethora of evidence already supports this point. Now, in the July 2011 Journal of the American Geriatrics Society Alexia Torke and colleagues have published "Timing of Do-Not-Resuscitate Orders for Hospitalized Older Adults Who Require a Surrogate Decision-Maker."
They conclude: "For patients who have a DNR order entered during their hospital stay, order entry occurs later when a surrogate is involved. Surrogate decision-making may take longer because of the greater ethical, emotional, or communication complexity of making decisions with surrogates than with patients."
POLST in Australia
I was pleasantly surprised to learn about Queensland's "Acute Resuscitation Plan." While the organizers explained that it was developed independently from POLST, it is remarkably similar. Still, there is at least one key difference. Failure to complete a section on a POLST triggers the default choice: the treatment will be provided. In contrast, failure to object on an ARP means, when determined not medically indicated, CPR will not be provided. This is, in essence, a reversal of the long-criticized CPR presumption in those cases in which the presumption is inappropriate.
Dying Prohibited
A presenter from Queensland Health used this cartoon in a PowerPoint deck the other day. While futility disputes are one problem, this nicely illustrates the far bigger problem.
Medical Futility - Conflict and Illusory Consensus
Wesley Smith, a well-known opponent to medical futility policies and laws, clarified his position in commenting on a new study in the Archives of Pediatrics and Adolescent Medicine. He writes: "My opposition to what I call Futile Care Theory has never been about withdrawing treatment that sustains life but does not provide cure or improvement, but about medical personnel and/or ethics committees forcing an end to treatment over the objections of those who want non elective treatment continued."
It strikes me that depending on how the term "coercion" is used, I could almost agree with Wesley here. It seems rare that providers literally coerce surrogates into stopping what the provider thinks is non-beneficial treatment. Providers typically lack the power to take any such a position. Far more relevant than coercion in this context is the ethical justifiability of persuasion and manipulation. For example, the option to continue the ventilator is simply not presented or is not presented as a "real" option.
In other words, medical personnel and ethics committees rarely "force" treatment over surrogate objections, because there often are no surrogate objections in the first place. There is no conflict. There appears to be consensus.
However, that the consensus is arguably "manufactured" in the sense that the surrogates do not get full "Canterbury
Texas Advance Directives Act - Brief Update
The Dallas Observer has a very brief update on the status of the Texas Advance Directives Act, "How Long Should Texas
In short, no bills to amend and/or repeal the unilateral refusal provisions succeeded in the 2011 legislative session. The issue is to be studied. And we will see bills to amend and/or repeal introduced again in 2013.
In short, no bills to amend and/or repeal the unilateral refusal provisions succeeded in the 2011 legislative session. The issue is to be studied. And we will see bills to amend and/or repeal introduced again in 2013.
Rule of rescue or the good of the many? An analysis of physicians’ and nurses’ preferences for allocating ICU beds
A new study from the University of Pennsylvania published in the July 2011 Intensive Care Medicine indicates that the so-called “rule of rescue” – whereby clinicians are prone to try to save their own patients as opposed to opening up a bed for a new patient – often prevails even in the face of substantial social benefit in terms of cost containment and procurement of organ donations.
In sum, the ‘rule of rescue’ represents a substantial and persistent barrier to the efficient allocation of scarce resources and may impede efforts to improve patient triage or constrain costs. The authors conclude that future research is needed to identify the actual frequencies with which clinicians prioritize individual patients when doing so carries real social costs, and to further explore factors related to the observed variability in allocation patterns among clinicians.
The Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics at Harvard Law School Seeks Distinguished Candidates for the 2012-2014 Academic Fellowship Program
The Petrie-Flom Center for Health Law, Bioethics, and Biotechnology at Harvard Law School will be accepting applications for the 2011-13 Academic Fellowship Program on a rolling basis from September 1, 2011through November 14, 2011.
The fellowship is designed for applicants who have the intellectual focus to make top-rate academics in health law policy, bioethics or biotechnology, and who would benefit from time to develop their ideas and writing before they enter the academic job market. Our prior fellows have found homes on the law faculties at Harvard, Berkeley, BU, UCLA, Cornell and the University of Arizona. The fellowships include stipends of $60,000/yr for two years, a research budget and access to the full range of the Center's and Harvard's facilities and research resources. If you know of any candidate who might be interested, please forward them the call for applications below. To access the Center's website for more information about the program and our affiliates, please refer to their website at http://www.law.harvard.edu/programs/petrie-flom/index.html
PURPOSE: The Petrie-Flom Center is an interdisciplinary research program at Harvard Law School dedicated to scholarly research at the intersection of law and health policy, including issues of health care financing and market regulation, biomedical research and bioethics. The Academic Fellowship is a postdoctoral program specifically designed to identify, cultivate and promote promising scholars early in their careers. Fellows are selected from among recent graduates, young academics and mid-career practitioners who are committed to spending two years at the Center pursuing publishable research that is likely to make a significant contribution to the field of health law policy, medical innovation policy or bioethics. Our prior fellows have found employment as law professors at Harvard, UC Berkeley, BU, UCLA, Cornell and the University of Arizona. More information on the Center can be found at PROGRAM: Petrie-Flom fellowships are full-time two-year residential appointments starting in the summer of 2012. Fellows devote their full time to scholarly activities in furtherance of their individual research agendas. The Center does not impose teaching obligations on fellows, though in appropriate cases voluntary teaching opportunities may be made available. In addition to pursuing their research and writing, fellows are expected to attend and participate in research workshops on health law, bioethics, and biotechnology, and other events designated by the Center. Fellows are also expected to help plan and execute a small number of events in their field of expertise during their tenure, and to present their research in at least one of a variety of forums, including academic seminars, speaker panels, or conferences. Finally, the Center also relies on fellows to provide opportunities for interested students to consult with them about their areas of research, and to directly mentor our Student Fellows. STIPEND AND BENEFITS: Fellows have access to the full range of resources offered by Harvard University. The Center provides each fellow with a private office, a research budget, and a stipend of $60,000 per full year. ELIGIBILITY: Applicants must hold an advanced degree in a discipline that they intend to apply to issues relating to health law policy, biomedical research or bioethics. The Center particularly encourages applications from those who intend to pursue careers as law professors, but will consider any applicant who demonstrates an interest and ability to produce outstanding scholarship at the intersection of law and health policy, bioethics, or biotechnology during the term of the fellowship. Applicants will be evaluated by the quality and probable significance of their research proposals, and by their record of academic and professional achievement. APPLICATION: Applications will be accepted starting September 1, 2011. Completed applications must be received at petrie-flom@law.harvard.edu by 9:00 a.m. on November 14, 2011. Please note that ALL application materials must be submitted electronically, and should include: 1. Curriculum Vitae 2. PDFs of all transcripts from all post-secondary schools attended. 3. A Research Proposal of no more than 2,000 words describing the applicant's area of research and writing plans. Research proposals should focus less on describing an interesting topic than on demonstrating that the applicant has an interesting and original idea about the topic that seems sufficiently promising to develop further. 4. A writing sample that demonstrates the applicant's writing and analytical abilities and ability to generate interesting, original ideas. This can be a draft rather than a publication. Applicants who already have publications may also submit PDF copies of up to two additional published writings. 5. Three letters of recommendation, emailed directly from the recommender. Letter writers should be asked to comment not only on the applicant's writing and analytical ability, but on their ability to generate new ideas and their commitment to pursue that intellectual enterprise in this area. To the extent feasible, letter writers should provide not just qualitative assessments but also ordinal rankings. For example, rather than just saying a candidate is "great," it would be useful to have a statement about whether the candidate is (the greatest, in the top three, among the top 10%, etc.) among some defined set of persons (students they have had, people they have worked with, etc.). All application materials except letters of recommendation should be e-mailed by the applicant to: petrie-flom@law.harvard.edu Letters of recommendation should be emailed directly to the same address from the reccomender. For questions or additional information, contact: Katherine Paras, Administrative Director |
Jocelyn Downie on Medical Futility at the AABHL
The AABHL conference on medical futility kicked off last night with a lecture by Jocelyn Downie titled "Cutting the Gordian Knot of Futility: Responding to the Unilateral Withholding and Withdrawing of Potentially Life-Sustaining Treatment."
After reviewing relevant court decisions from New Zealand and Australia New Zealand and Australia
Professor Downie argued that we must focus on legislative reform after engaging in both values clarification (e.g. autonomy, equality, distributive justice, humility, pragmatism, access to justice, conscience) and conceptual clarification (e.g. "futility," "necessaries of life"). She argued that physicians have a lawful excuse to withdraw in only six circumstances:
1. Informed consent
2. Physical impossibility
3. Ability to transfer
4. Valid resource allocation policy
5. Statutory authorization or obligation
6. Order from court or tribunal
Given her pessimism about the ability of courts to appropriately handle these cases, Professor Downie was especially supportive of specialized tribunals like the CCB. She encouraged more research about their strengths and weaknesses compared to courts.