02:00
The Final Exit Network is ten years old this month.
FEN is an all-volunteer organization serving members in all 50 states who:
- Are suffering from intolerable medical circumstances
- Are mentally competent
- Want to end their lives
- Meet FEN's official, written criteria
FEN offers guidance and the most current information known for self-deliverance when the member is ready to choose.
02:30
A study just published in the August 2014 issue of the Journal of Surgical Research finds that religiously affiliated intensive care unit patients receive more aggressive end-of-life care in the ICU. Yet this high-intensity care does not translate into any significant difference in survival.
Study Objectives
Previous studies have already demonstrated that religious patients receive more aggressive end-of-life care. In this study, the Vanderbilt surgeon authors sought to examine the effect of religious affiliation on EOL care in the ICU setting. (The lead author, Myrick Clements Shinall, Jr., earned an M.Div. concurrently with his M.D.)
Study ItselfThe authors looked at patients admitted to any adult ICU at a tertiary academic center who required at least 2 days of mechanical ventilation and who died within 30 days of admission. This group had 334 patients, with 235 affirming a religious affiliation. The affiliated and non-affiliated patients had similar levels of acuity.
FindingsThe authors used hospital charges, ventilator days, hospital days, and days until death as proxies for intensity of care among the EOL patients. Religiously affiliated patients in the EOL group incurred:
- 23% more hospital charges
- 25% more ventilator days
- 23% more hospital days
- 30% longer time until death
Despite this, survival did not differ significantly among affiliated and non-affiliated patients.
02:00
Jahi McMath was declared dead both by multiple neurologists and by a California court in December 2013.
Yet, just days ago her mother made the following announcement to the crowd at the New Beginnings Community Center's summer gala event at the Long Island Aquarium:
"She has good days and bad days. . . . Some days I ask her to move her left hand, or her right hand and she does...I'm her mom and I know that my daughter is in there."
02:00
Providence Health & Services is establishing the Providence Institute for Human Caring under the leadership of Dr. Ira Byock.
Based at Providence TrinityCare Hospice in Torrance, Calif., the new institute will support clinicians, patients and families across the five states that Providence serves and others nationwide.
The institute will bring greater attention to the personal side of illness, dying, caregiving and grieving. Its goal is to offer clinicians the resources, training and support they need to have meaningful conversations with patients and families about underlying worries and desires related to a medical condition, so that together they can develop the best approach to care.
09:45
My latest post over at the American Journal of Bioethics blog is now posted here: "Brain Death Is a Flash Point in End-of-Life Law, Ethics and
Policy."
06:40
This spring, UCLA hosted a mini symposium titled "Death: Why the Brain Matters." Happily the video is now available. The speakers were
- Alex Capron, Professor, Law and Medicine, USC
- James Hynds, Senior Clinical Ethicist, UCLA Health System
- Paul Vespa, Director, Neuro ICU, RRUCLA Medical Center
16:25
Next month, the Mediation Center at Hamline University will offer a 20-hour, three day Elder Mediation Training, on September 25, 26 and 27.
This program will expand your skills into the growing field of Elder Mediation. The workshop covers strategies for facilitating adult family conversations around issues like:
- Living arrangements
- Caregiving
- Financial planning
- Medical decisions
- Adult guardianship mediation
- Mental capacity
- Wills and estate planning
- Multi-party mediation
- Mediation intake.
Janeen Massaros and John Lundblad will also cover how to handle strong emotions in family conflict situations and move forward. This class uses vignettes and role plays to help you develop your skills.
05:49
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| Lee Carter |
On October 15, 2014, the Supreme Court of Canada will hear oral arguments in the case of Lee Carter, et al. v. Attorney General of Canada, et al. Written Factums of key parties are available here.
The plaintiffs were terminally ill patients seeking physician aid in dying. Ms. Kay Carter and the applicant Ms. Gloria Taylor both suffered from intractable and progressive diseases and are now deceased. They had joined with the others in bringing a civil claim before the British Columbia Supreme Court challenging the constitutionality of the Criminal Code provisions against assisted suicide and euthanasia, specifically ss. 14, 21(1)(b), 21(2), 22, 222(1)-222(5), and 241. They focused their case, however, on s. 241, which prohibits aiding another person to commit suicide.
The plaintiffs succeeded at trial notwithstanding the Supreme Court of Canada's 1993 decision in Rodriguez v. British Columbia (Attorney General) that s. 241 did not infringe Charter rights. A majority of the Court of Appeal, however, allowed the Attorney General of Canada’s (“AGC”) appeal.
The questions to be addressed concern the Canadian Charter of Rights (Right to life, Equality, Fundamental justice). Specifically,
- Whether trial judge erred in distinguishing Rodriguez
- Whether the Criminal Code provision prohibiting aiding person to commit suicide infringes the Charter
- If so, whether such infringement is justifiable
There are quite a number of interveners. Their briefs/factums are due August 29.
- Attorney General of Ontario
- Attorney General of Quebec
- Attorney General of British Columbia
- Council of Canadians with Disabilities and the Canadian Association for Community Living
- Christian Legal Fellowship
- Canadian HIV/AIDS Legal Network (the 'Legal Network'') and the HIV & AIDS Legal Clinic Ontario (''HALCO'')
- Association for Reformed Political Action Canada
- Physicians' Alliance Against Euthanasia
- Evangelical Fellowship of Canada
- Christian Medical and Dental Society of Canada
- Canadian Federation of Catholic Physicians' Societies
- Dying with Dignity
- Canadian Medical Association
- Catholic Health Alliance of Canada
- Criminal Lawyers' Assocation (Ontario)
- Farewell Foundation For The Right To Die
- Association québécoise pour le droit de mourir dans la dignité
- Canadian Civil Liberties Association
- Catholic Civil Rights League
- Faith and Freedom Alliance and Protection of Conscience Project
- Alliance Of People With Disabilities Who Are Supportive of Legal Assisted Dying Society
- Canadian Unitarian Council
- Euthanasia Prevention Coalition and Euthanasia Prevention Coalition - British Columbia
- Advocates' Society
- David Asper Centre For Constitutional Rights
09:02
If you will be in or near Grand Rapids, Michigan on Friday, September 5, 2014, come to Spectrum Health's 2014 ethics conference for clinicians: “Ethics, Law and Clinical Practice" at the Calvin College Prince Conference Center.
This is a one-day symposium addressing the ethical complexities in health care today. Conference sessions and networking opportunities are designed to increase awareness and provide strategies to clinicians from all disciplines to support ethical care in a variety of settings.
AgendaHubris to Humility: Medical Power in Medical Futility ConflictsThaddeus Pope, JD, PhDDirector, Health Law Institute Associate Professor of LawHamline University School of Law
When Parents and Providers Disagree: Understanding and Responding to Conflicts in the Care of ChildrenDouglas Diekema, MD, MPHDirector, Education Treuman Katz Center forPediatric BioethicsProfessor of Pediatrics and BioethicsUniversity of Washington School of Medicine
Current Concepts in DisclosureKelly Saran, MS, RN, CPHRMAdministrative Director, Office of Clinical SafetyUniversity of Michigan Health System
Humor: Finding a BalanceJudge Sara Smolenski, JDChief Judge, State of Michigan 63rd District Court
Objectives
- Provide a forum to discuss challenges in clinical practice from an ethical perspective.
- Explore how legal considerations influence clinical and ethical decision making at the bedside in a range of clinical settings.
- Explore the interrelationship between ethics and law
- Identify ethically- and legally-informed personal, professional and institutional strategies for addressing challenging situations in clinical practice.
02:00
The Minnesota assisted suicide case against the Final Exit Network begins again at 9:00 a.m. on September 8, 2014, in the Dakota County Judicial Center in Hastings.
In June 2014, the Supreme Court of Minnesota denied the State's petition for review of the Court of Appeal's September 30, 2013 decision in favor of FEN. The Supreme Court also dissolved the stay of proceedings in the trial court, which has been in effect since March, 2013.
The case now resumes in the trial court as if the defendants faced a new indictment. Instead of being charged primarily under a statute that prohibits "advising, encouraging, or assisting in a suicide," the new indictment charges them only with "assisting in a suicide."
Final Exit Network, Inc, and Larry Egbert are each charged with assisting in a suicide, aiding and abetting to assist in a suicide, interfering in a death scene, and aiding and abetting to interfere in a death scene. Roberta Massey is charged only with aiding and abetting to assist in a death scene.
At the September 8 hearing, the judge will set a trial date, discuss pending motions, decide whether any additional pretrial hearings are necessary and, if so, schedule them.
07:51
Reported end-of-life care experiences are typically worse in the nursing home setting, according to the latest results of a recent CMS survey developed and field tested by RAND.
The Hospice Experience of Care Survey measured experiences of patients and their caregivers in three hospice settings:
- Nursing home (including both skilled and regular nursing facilities)
- Home care (including assisted living facilities)
- Inpatient care (acute care hospitals and freestanding hospice IPUs).
The overall ratings were:
- Home = 92.2
- Hospital = 93.0
- Nursing Home = 90.2
Nursing home results were particularly lower for Hospice Team Communication, Providing Emotional Support, and Understanding the Side Effects of Pain Medication.
The survey is meant to act as a pilot to test the future Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey, which will be implemented at eligible hospices nationwide beginning in 2015.
12:06
Queensland researchers led by Ben White at the Australian Centre for Health Law Research, Queensland University of Technology (where I'll be tomorrow), have just published research in the Medical Journal of Australia demonstrating "critical gaps in the legal knowledge of many doctors who practise end-of-life medicine."
The study focused on (1) the validity and effect of advance directives and (2) the authority of substitute decisionmakers. The results show that physicians do notpossess sufficient legal knowledge:
- to determine whether an advance directive presented to them is valid.
- to determine whether they are legally obliged to follow a directive that refuses treatment in a situation when providing treatment is clinically indicated.
- to determine the legally authorized decisionmaker where there are various people who have an interest in the well-being of a patient
I am sure that U.S. results would be the same or worse. The authors rightly conclude that doctors' "lack of legal knowledge places their patients’ interests and rights at risk— and them at legal risk."
02:30
Several Taiwanese researchers have just published a new study: "Over-Optimistic Portrayal of Life-Supporting Treatments in Newspapers and on the Internet: A Cross-Sectional Study Using Extra-Corporeal Membrane Oxygenation as an Example."
From the article's conclusion: Newspapers and the Internet have the potential to influence patients' knowledge and attitudes toward medical decision-making by providing over-optimistic medical information through the following ways:
- First, the mass media tend to attract the public’s attention by reporting the positive outcome of an important breakthrough in clinical medicine
- Second, the mass media tend to report patients who survive to hospital discharge, rather than those who die during hospital stay
- Third, the survived patients and their stories are more likely to be duplicated in newspapers and on Internet web pages than those who die during hospital stay.
Newspaper readers and Internet users may, therefore, mistakenly believe that ECMO can usually rescue patients from all life-threatening conditions. However, ECMO, similar to other aggressive LST such as CPR, is ethically appropriate to be initiated on patients with reversible diseases, not on those with irreversible diseases.
15:54
In an interview with BBC-4, consultant cardiologist James Beattie (Heart of England NHS Foundation Trust in Birmingham) argues that hospitals should let more elderly patients die.
Several papers report on the radio interview. The Daily Mail title is provocative: "Let More Elderly Die . . . Patients with Low Quality of Life Should Not Be Saved." Salon reports with the less provocative title "Let the Dying Die."
But the sensationalism is misplaced. The statistics and recommendations are familiar. Still, they remain under-addressed both in the UK and in the USA.
07:20
A radio news report, yesterday, reviews Texas-based My Directives and its Universal Advance Digital Directive (uADD).
Easy to CreateMyDirectives makes it easy to create a state-of-the-art emergency medical directive. You can answer questions in your own words or pick from a selection of the most common answers. Add your thoughts with as much detail as you wish. You can even add your own video responses.
East to ShareYou can share your directive with anyone at any time. Hospitals that link to MyDirectives can access your directive when you are admitted.
Easy to UpdateWant to change an answer or consider another option? With MyDirectives, you are always in control and confident that doctors can only access your most recently signed version.
07:44
Less than half of the patients who underwent a risky heart surgery at the Mayo Clinic between 2008 and 2012 completed advanced directives. (JAMA Internal Medicine 8/4/14)
Aortic StenosisMayo researchers focused on patients with aortic stenosis, which occurs when the main artery to the heart does not open all the way. The problem causes poor circulation and can lead to death.
Aortic stenosis can be treated by either (1) opening the patient's chest and replacing the artery, or (2) with a less invasive procedure known as transcatheter aortic valve replacement for people not strong enough to have the full surgery.
But in both cases patients are at risk for death and other complications related to the surgery, such as stroke and heart rhythm problems. About a third of people who undergo either procedure will die during the two years after surgery.
Advance DirectivesDespite the serious consequences from aortic stenosis, only about 47 percent of the study patients had advanced directives. This is an unfortunate completion rate. And it is remarkable given the close proximity of the Mayo Clinic to La Crosse, Wisconsin and its internationally famous high completion rates.
18:01
A valuable conference on October 24, 2014 in Saint Paul: "Health Care Reform Implementation in Minnesota: Mission Advanced But Not Accomplished."
01:30
Last week, Delaware enacted H.B. 416. The legislation creates no new rights or duties. But like new legislation in many other states, it improves the vocabulary and terminology in existing law relating to people with disabilities. 
People First Language (“PFL”) legislation is part of a national movement to promote dignity and inclusion for people with disabilities. PFL specifies that the order of terms used to describe any individual places the person first, and the description of the person second. For example, when using PFL, outdated terms such as “the disabled” would be phrased as “persons with disabilities.” This language emphasizes that individuals are people first, and that their disabilities are secondary.
In compliance with PFL guidelines, the new Delaware law amends current references to persons with disabilities throughout the Code by placing the person first and the disability second.
Also pursuant to PFL, the new Delaware law removes offensive and/or insensitive language from the Code and replaces that language with respectful language. For example, the Act replaces antiquated and offensive terms such as “mental retardation” and “mental illness” with more appropriate terms like “intellectual disability” and “mental condition,” respectively.
04:31
Last week, the Local Clinical Commissioning Groups, the Leicestershire Partnership NHS Trust and the University Hospitals of Leicester NHS Trust published an innovative "quality review" examination of the health system in Leicester, Leicestershire and Rutland.
Among other findings, the reviewers found that patients did not always receive the most appropriate type of end of life care, including palliative care and the use of DNAR orders. This happened in over 10% of the examined cases. There are two main situations.
1. In most cases, this meant that patients who were at the end of their life and may have expressed a preference to die outside of hospital were still brought into hospital. (This is where a POLST would have helped.)
2. Some patients in hospital were not recognized as being at the end of life. As a result patients were resuscitated or had other forms of medical intervention when it would have been in their best interests to have had end of life care and comfort.Frequently there was a lack of recognition for the need to broach the subject of DNAR with the patient and/or their next-of-kin resulting, at times, in inappropriate hospital admissions and treatment.
05:17
The Boston Globe has a wonderful profile of the life of Haleigh Poutre. Her story powerfully illustrates the limits of prognostication for some critically ill patients.
During the early 2000s, Haleigh had been abused by her adoptive parents. Eventually, in 2005, when she was 11 years old, Haleigh was brought to a local ED with a severe brain injury. She was soon diagnosed in a persistent vegetative state, and the Massachusetts Supreme Judicial Court authorized the Department of Children & Families to stop life-sustaining treatment.
But Haleigh got better. Just a day after the Supreme Judicial Court authorized the removal of Haleigh’s life support, she was showing signs of mental alertness. She was looking around her hospital room, clearly attentive. The Boston Globe story shows her life today.
As I have written, the close call in Haleigh's case prompted Massachusetts to pass sweeping child-welfare reform measures, including the need for medical input from at least two different institutions before making decisions in end-of-life cases.
14:25
In accordance with new state regulations finalized in December and effective this spring, the Washington Department of Health has posted around 100 hospital policies related to end-of-life care.
While some are heavily redacted (and thus probably not compliant with the law), many are complete. These should be helpful to other hospitals across the country as models and templates for policy drafting.
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