CNN: ‘Second Thoughts’ Dir. John Kelly Takes on Final Exit Network and Tony Nicklinson

"death with dignity", euthanasia, final exit network, john kelly, Our News & Commentary Blog, Second Thoughts

One sign of the skewed nature of media coverage and the times we live in is how little time and attention are given to the very real life-and-death situations facing people in the UK in the face of draconian shredding of the social safety net for disabled people.  Some of that shredding is already done and much more is to follow.  The majority of people with disabilities in the UK  are much more concerned with how they are going to survive in the face of these cuts rather than how they’re going to die – since these cuts are ensuring that death will come sooner and more painfully for many.  (If you think I’m exaggerating, check out this summary of the latest report gauging the effects of budget cuts to people in the UK.)

But of course that’s not getting that much coverage, especially considering the number of people who will be affected.  What does get coverage is when some selfish, self-absorbed disabled person makes loud public noises about wanting to kill himself – or, more accurately, wants to have someone else be able to legally kill him when he’s ‘ready.’  That’s not a hypothetical person, but describes Tony Nicklinson, who is getting worldwide coverage regarding his wish to have a doctor be able to kill him with a legal injection sometime in the future.

The public, of course, eats this up.  It’s so much easier to get behind the desire of a disabled person to kill himself than it is to support the needs of thousands of people who may require more of you – more support in the community and even a little more from your paycheck to support the services and supports needed for many disabled people to live decent lives.

It doesn’t cost a penny to support suicide for people with disabilities.  And it supports the notion that since our lives suck anyway, the best help we can receive is to make it easier for us to kill ourselves.

Our thanks to John Kelly for being the disability voice in CNN’s coverage of this farce.


 

 

Joseph Fins, Expert on Consciousness, Calls for Temperance re: Organ Solicitation and Severe Brain Injury

brain injury, coma, organ donation, Our News & Commentary Blog, vegetative state, , ,

It’s become fairly clear over the past few years that two trends in medicine are in conflict, albeit mostly under the radar.  On one hand, several promising research and clinical developments have given reason to be cautiously optimistic about the recovery potential of at least some people with significant brain damage, and has led to calls to devote more time and research to promote recovery of people with significant brain injury.

At the same time, advocates for organ procurement have pushed more expansive criteria in terms of ‘eligibility’ for being an organ donor (to put it bluntly – you don’t have to be as dead as you used to be) and have gotten more aggressive in approaching families even while their loved ones are still receiving life-sustaining medical care.

People who have followed this blog over the past few years have probably noticed that, to some degree, the concerns expressed here over developments in procuring organ donors, ‘rush to judgment‘ in brain injury, and loose standards in determining brain death increasingly seem to overlap.  That ‘overlap’ covers the areas of conflict.

The first hint I noticed in public about this was in the midst of an excellent article published in The Times in the UK.  Unfortunately, the article is no longer accessible without a subscription to the paper, but I wrote about it a few years ago when it was still accessible to the impoverished masses:

“The Undead,” published in The Times, is simply the best discussion of the complexities of researching human consciousness that I’ve seen in the media. As anyone who follows these issues knows, there has been periodic attention given to research involving the differences between people in persistent vegetative state and those in a “minimally conscious” state the U.S. media as well as the UK. This article really stands out.

***

Toward the end of the article, European researcher Steven Laureys makes some assertions that would sound radical and alarmist coming from someone like me:

According to Steven Laureys, professor of neurology at Liège University, there is constant pressure in many parts of the developed world to withdraw sustenance from vegetative patients in order to allow them to die so that their body parts can be harvested. In a recent study, Laureys reports, “slightly less than half of surveyed US neurologists and nursing-home directors believed that patients in a vegetative state could be declared dead”. His remarks should be set against the background of widespread shortages of organs and body parts for transplantation. (Emphasis added.)

I was surprised to see that statement from Laureys at the time, but since the allegation came from him – based in Europe – the implications regarding practices in the USA were tenuous.  Recently, though, I was surprised once again when Diane Coleman alerted me to a recent article by Dr. Joseph Fins.  Before I excerpt and discuss the article in question, here’s a little about Fins from his faculty website:

Dr. Joseph J. Fins is The E. William Davis, Jr. M.D. Professor of Medical Ethics and Chief of the Division of Medical Ethics at Weill Cornell Medical College where he also serves as Professor of Medicine (with Tenure), Professor of Public Health and Professor of Medicine in Psychiatry. He is also an Attending Physician and the Director of Medical Ethics at New York-Presbyterian Weill Cornell Medical Center and on the Adjunct Faculty of Rockefeller University where he is a Senior Attending Physician at The Rockefeller University Hospital. Dr. Fins is an elected Member of the Institute of Medicine of the National Academy of Sciences (USA) and was elected a Fellow of The American Academy of Arts & Sciences in 2012.

He’s also the current president of the American Society for Bioethics and Humanities (ASBH).  More from his faculty site:

His current scholarly interests include ethical and policy issues in brain injury and disorders of consciousness, palliative care, research ethics in neurology and psychiatry, medical education and methods of ethics case consultation. He is a co-author of the landmark 2007 Nature paper describing the first use of deep brain stimulation in the minimally conscious state. His forthcoming book, Rights Come to Mind: Brain Injury, Ethics & The Struggle for Consciousness is under contract with The Cambridge University Press.

So if you haven’t heard of Fins, it should be clear that he’s someone who should be taken seriously when he expresses some ethical concerns about evolving practices in medicine that trouble him.

The March 2012 issue of Virtual Mentor, American Medical Association Journal of Ethics featured an article by Dr. Fins titled Severe Brain Injury and Organ Solicitation: A Call for Temperance.  Unlike many journal articles, this one is freely accessible.  Here’s the intro:

Several years ago I resigned from a board position with the local organ procurement organization (OPO) over the status of organ retrieval from those with severe brain injury. I resigned with a heavy heart but a wary brain because I am a supporter of organ transplantation. Why else would I have agreed to join the board of an OPO? It was pro bono service in the pursuit of a good—the giving of life to patients in dire need of replacement organs in the face of end-stage disease. But there was another set of goods, emerging goods, for a different constituency—some patients with disorders of consciousness—that seemed in opposition to some of the policies pursued by the mainstream organ donation community. I was particularly concerned about patients who were in the minimally conscious state (MCS), a brain state just above the vegetative state.

Fins spends some time giving an overview of the distinctions between coma, vegetative state, and minimally conscious state.  He also gives what are regarded as the standards for recovery times.  You can find some of that info by searching this site or read Fins’ article yourself.    In the next section, Fins gives a description of some of the issues that trouble him in blunt language:

Federal regulations require that Organ Procurement Organizations (OPOs) be notified of the impending death of potential donors [10]. The timing of this notification can be self-evident: the patient on life support and vasopressor agents that maintain the blood pressure artificially, whose end is inevitable, no matter the intervention. But sometimes, the end is contingent upon decisions about the withholding or withdrawal of life support.

Case in point: what to do about those who have sustained a severe brain injury. Totally dependent upon ventilator support for at least airway protection if not ventilation as well, they can quickly become the imminently dying if a decision is made to withdraw the ventilator. And once such decisions are contemplated, regulations would have it that the OPO be notified about the possibility of what is commonly and euphemistically termed a potential organ harvest.

My problem as an OPO board member was that, too often, patients like these were viewed as if they were destined or compelled to die. They were seen as organ donors even before their organs had outlasted a viable body—and brain. As an ethics consultant at an academic medical center, I had seen OPO representatives hover in an ICU, waiting to sweep in—as some intensivists have described it to me—and collect what they viewed as rightly theirs—organs that would have a salutary effect on another human being.

I use the word “hover” deliberately, if a bit provocatively, because that is how families of many brain injury patients viewed it. I know this from interviews with more than 40 families, each with a member who had a disorder of consciousness, who came to Weill Cornell Medical College for enrollment in neuroimaging and EEG studies designed to elucidate mechanisms of recovery. While they were here, we conducted extensive interviews with patients’ surrogates about their experiences with the care system as they made their journey from acute injury on through rehabilitation and chronic care [11].

One of the most powerful scenes, often repeated, occurs early in the course of care, when patients are still in the ICU: surrogates are approached for organ donation. After the patients survive and recover to varying degrees of function, these families still resent what is often described as the predatory behavior of OPO representatives. Many families report zealous attempts at procurement and a near-certainty about their loved one’s prognosis: death was inevitable, ventilators should be withdrawn, and organs should be redirected for some greater good. But with valuable hindsight, families later ask, how did they know? And how could they have been so wrong, both medically and perhaps ethically?

Fins ends with his call – or plea – for temperance.  I’ll leave it to readers to follow the link to read his recommendations.  The excerpts here should be more than enough to show that the writing is eminently readable.

I am grateful to Dr. Fins for writing this.  But I admit that I’m not very optimistic about his call – or plea – being heard or heeded.  I’m not sure he’s fully in touch with just how devalued people with significant brain injuries are – uncertain prognosis or no.  And what Fins is calling for is something that will demand more money and resources – that may not “pay off” in a way that is sufficient to satisfy his colleagues.

And on the other side of the equation are the OPOs – Organ Procurement Organizations.  They’re well organized and well-intentioned.  They are not going to embrace the longer waiting periods for recovery in the case of brain injured people that Fins recommends.  The OPOs will fear loss of suitable donor organs – some due to complications developed during the longer waiting period.   Still others may not experience significant recovery, but become independent of a ventilator.  That leaves removal of a feeding tube as the means to death – dehydration doesn’t leave the organs in very good shape.

Don’t get me wrong.  I agree with Fins and would like to see the ‘rush to judgment’ cases come to a halt.  I’m just not sure many of his colleagues will see things that way.  –Stephen Drake

 

Settling in – First Post from New Blog Home

Our News & Commentary Blog

Welcome!

Hopefully, if you’re a regular reader of the blog and you’re reading this now (Friday, June 22 in the am), then you’ve found us again – or your email subscription was transferred smoothly – or  your subscription through Networkedblogs transferred.

Obviously,  it’s hard to get feedback from folks who aren’t getting blog alerts – but please check the new format.  Explore the NDY site – and let us know what you think.

WordPress seems pretty easy to adapt to so far.  We’ll all know better in the next blog post.

That’s when I’ll get to more content-oriented writing again.  For now, though.  Please check this out and let us know if things are working OK for you in this format or if something isn’t working as well as it used to.

That’s all for now.  More tomorrow.

 

 

 

 

 

Canada: Bad Ruling in British Columbia Hopefully Not Last Word, Says Disability Coalition

assisted suicide, Council of Canadians with Disabilities, court decisions, Our News & Commentary Blog

Last week, the Supreme Court of British Columbia issued a really bad ruling that opens the door to assisted suicide in at least that province. From what I’ve heard and read so far, the court skirted the issue of discrimination; that even if it’s legal to attempt to kill yourself, that doesn’t mean you get a painless and foolproof way to kill yourself. Well, this Court things it’s OK – as long as you’re old, ill or disabled.

Below is the press release from the Council of Canadians with Disabilities (CCD):

Canadians with Disabilities Dismayed by BC Court Approval of Assisted Suicide

15 June 2012
For Immediate Release

Today, the Supreme Court of British Columbia handed down its decision in the Carter case, opening the door for assisted suicide in Canada. Justice Lynn Smith found that the “provisions of the Criminal Code of Canada prohibiting physician–assisted dying, unjustifiably infringe the equality rights of Gloria Taylor, and the rights to life, liberty and security of the person of Gloria Taylor, Lee Carter and Hollis Johnson.”

Canadians with disabilities are disappointed by the Judge’s decision. There is a concern that vulnerable people will be put at risk if the Criminal Code provisions against assisted suicide are struck down. The Council of Canadians with Disabilities (CCD) urges the Government of Canada to appeal this decision.

Canadians who are concerned with this decision should write the Minister of Justice and encourage an appeal of this decision to the Supreme Court. Before any law is changed the interests of vulnerable persons including people with disabilities must be addressed.

-30-
For More Information Contact:

Dean Richert, Co-chair, CCD Ending of Life Ethics Committee,
Tel: 204-951-6273 (cell), Email: drichert@odgb.mb.ca

Action Alert! Speak Out on Proposed Rules for ‘Procuring’ Organs from People with Disabilities

action alert, organ donation, organ transplants, Our News & Commentary Blog, policy, united network for organ sharing

Action Alert: Procuring organs from people with disabilities   

Take Action!

Comments on proposed rules due Friday, June 15!

The United Network on Organ Sharing (UNOS) has issued proposed requirements for organ procurement from people who depend on ventilators or other life sustaining treatment, including people with upper spinal cord injuries and people with neuromuscular disabilities. 

Comments are due Friday, June 15, 2012.

There are several problems with the proposed requirements.  The most serious problems are:

  •  The hospital may refer a person to the local organ procurement organization even though the person is neither terminal nor near death and a decision to withdraw life support has not been made.
  •  The organ procurement organization may examine persons on life-support to determine their eligibility for organ donation without their knowledge or consent, even though they are neither terminal nor near death. 
  • The organ procurement organization is not required to condition eligibility for organ donation on assurances that a conscious patient’s decision to have life-support withdrawn is informed and voluntary and not a product of clinical depression or other factors that can be addressed such as the need for adequate attendant services and freedom from nursing facilities.

Click on the “Take Action” link to submit comments on the proposal.

You can access the proposed rules by accessing this URL:

http://tinyurl.com/lja8nx

It's proposal number 9 on the list.
 
Below is the text of the prewritten letter on the Capwiz site. You are more 
than welcome to modify or personalize the letter (or write your own entirely).
This is purely for information purposes - this letter is already on the Capwiz 
page so you don't have to copy any of this to send a comment - just go to the 
Capwiz page.

Letter:

The purpose of this letter is to provide comments on the Proposal to Update and Clarify Language in the DCD (Donation after Cardiac Death) Model Elements.

Failure to Acknowledge and Outreach to Affected Groups

The listing of “Affected Groups” at page 1 and 2 of the public comment notice includes “Donor Family Members” but not Prospective Donors. Since eligible organ donors include people with spinal cord injuries and neuromuscular disabilities who may choose to donate their organs following withdrawal of life-sustaining treatment, OPTN/UNOS should solicit comments from organizations representing people with these conditions. Nothing about us without us.

Addition of the Term “Disease” Handled in a Misleading Manner

According to the public comment notice:

“While rare, DCD donation may occur in patients that do not have a neurological injury, but a disease that renders them ventilator dependent (i.e. amyotrophic lateral sclerosis). As such, the term ‘disease’ was included in the language that describes suitable candidate conditions.”

The notice refers to “a disease that renders them ventilator dependent (i.e. amyotrophic lateral sclerosis).” The use of “i.e.” rather than “e.g.” suggests that ALS is the only disease that may render someone ventilator dependent. Obviously, this is not the case, as other neuromuscular disabilities, such as muscular dystrophy and spinal muscular atrophy, as well as post-polio syndrome are among the “diseases” that can require the use of a ventilator to sustain life.

It appears that the 2012 proposal language has been manipulated to avoid flagging disability groups that represent people who are now classified as potential DCD candidates. At the same time, the language encourages hospitals to tap into “currently unrealized donor potential” by notifying them of the eligibility of these same groups.

Failure to Restore the Ethical Safeguard of Separation Between Organ Procurement and Decision to Withdraw Life-Sustaining Treatment

A 2007 NEJM article discussed ethical concerns about Donation After Cardiac Death (DCD) as follows:

“[S]ome physicians and nurses at the bedside ‘continue to have concerns about the ethical propriety of the practice’ that ‘are numerous, complex and related to the specific roles they play.’ …They may be uncomfortable recommending the withdrawal of life-sustaining treatment for one patient and hoping to obtain an organ for another.” (Steinbrook, R, Organ Donation After Cardiac Death, N Engl J Med 357;3, p. 212, July 19, 2007 pp. 210-211.)

The public comment notice acknowledges that preliminary comments urged revisions to:
“[e]xplicitly endorse in the Proposal the longstanding ethical safeguard that the donor family not be approached about organ donation until the time at which a decision to withdraw life sustaining measures has been agreed to by the patient’s next of kin, … Gone is the crucial wall separating patient care from donation solicitations. Such undue influence on difficult decisions at a heart-wrenching time is ethically unacceptable.”

In response to this entreaty, the public comment notice states that “the OPO Committee disagrees with the position that a donor family not be approached about organ donation until the time at which a decision to withdraw life sustaining measures have been agreed to.”

The implication that the ethical principle of separation between health care treatment decisions and organ procurement has never existed is an effort to rewrite history. In 2000, the Institute of Medicine recommended that “the decision to withdraw life-sustaining treatment should be made independently of and prior to any staff initiated discussion of organ and tissues donation.” Committee on Non-Heart Beating Transplantation Ii, Institute Of Medicine, Non-Heart-Beating Organ Transplantation: Practice and Protocols 16 (National Academy Press 2000).

People with disabilities who would not die but for the removal of life support should not have the presence of OPO personnel or the prospect of organ donation suggested in any way as a potential factor in the decision to withdraw a ventilator or other life sustaining treatment. Any implication that a person’s organs are valued more than their life is unacceptable. The separation between health care decisions and organ procurement must be restored and carefully observed in policy and practice.

Failure to Provide Safeguards for Conscious Individuals

The separation between health care decisions and organ procurement is perhaps most essential for individuals who are considering ending their lives through withdrawing a ventilator or other form of life sustaining treatment. People with disabilities know that the decision to refuse life sustaining treatment can be very complex, and many of the factors are psychological, social and even economic in terms of the residential and home care options available.

In contrast, the public comment notice sounds like an insensitive bureaucrat wrote it:

“The OPO Committee noted that there have been cases when the OPO is contacted by the hospital when patients have irrecoverable, ventilator dependant, devastating neurologic injuries or illness and the patient is making the decision to withdraw the ventilator or cardiopulmonary assist device. This level of autonomy is consistent with the Federal Patient Self Determination Act of 1990….”

Back in the 1980’s, several court cases involving young men on ventilators established the right to refuse treatment, using a similarly superficial approach. Men like Larry McAfee and David Rivlin did not want to be stuck in a nursing facility and, in essence, said “give me liberty or give me death.” (See Applebome, P, An angry man fights to die, then tests life, New York Times, Feb. 7, 1990, http://www.nytimes.com/1990/02/07/us/an-angry-man-fights-to-die-then-tests-life.html?pagewanted=all&src=pm.) The courts uniformly ignored the demand for freedom from confinement in a nursing facility and the need for home care, and uniformly found a “right to die.” Years later, one of the bioethicists involved in the Rivlin case issued an apology to the disability rights activists who criticized these rulings:

“I am now embarrassed to realize how limited was the basis on which I made my decisions about David Rivlin. In hindsight, it has been very well documented that there was no medical need for Rivlin to be effectively incarcerated in a nursing home. If Rivlin had been given access to a reasonable amount of community resources, …he could have been moved out of the nursing home and probably could have had his own apartment. He could have been much more able to see friends, get outside a bit, and generally have a much more interesting and stimulating life. The reasons he gave for wanting to die were precisely how boring and meaningless life was for him.

“This is the key lesson that disabilities advocates are trying to teach the rest of us.” Brody, H, A bioethicist offers an apology, Health, Oct 6 2004, http://www.lansingcitypulse.com/lansing/archives/041006/features/health.asp

OPTN/UNOS has made similar mistakes, which should be corrected rather than being again codified into public policy. While the organ procurement community is not solely responsible to develop safeguards to ensure that an individual’s decision to withdraw life sustaining treatment is truly informed and voluntary, that community can certainly call for appropriate safeguards, help ensure that the disability community’s leadership in developing safeguards is respected and followed, and draw a firm line between organ procurement efforts and health care decisions.

Violations of Civil and Constitutional Rights of People With Disabilities

On May 24, 2012, the National Disability Rights Network (NDRN) issued a groundbreaking report condemning third party decisions to withhold medical treatment including hydration and nutrition from individuals with disabilities without a terminal condition or permanent unconsciousness as a denial of the basic constitutional and civil rights of individuals with disabilities. The NDRN Report states:

“[T]here are times, as this report will describe where physicians recommend and family or other surrogate decision makers decide to not provide a needed transplant, to withhold medical treatment including hydration and nutrition of individuals without a terminal condition, or to sterilize people all on the basis of their disabilities. Applied in these ways, medical decision making and procedures are discriminatory and deny basic constitutional rights to individuals with disabilities including the rights to liberty, privacy, and other statutory and common law rights.” Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights, at pp. 10-11. http://www.ndrn.org/images/Documents/Resources/Publications/Reports/Devaluing_People_with_Disabilities.pdf

The procedures outlined in the DCD proposal appear to treat people who depend on a ventilator or other form of life support, but are not otherwise terminally ill (e.g. from end stage cancer), as though they are expendable commodities rather than people. These individuals are singled out for discriminatory treatment by those who pursue what would otherwise be a laudable and noble goal. What has already transpired and what is proposed as policy must be revisited and revised to give full weight to the civil and constitutional rights of individuals with the most significant disabilities. And that process cannot take place without the substantial involvement of people who themselves depend on ventilators and other forms of life-sustaining treatment as well as those who advocate on their behalf.

Again, you’ll find this same letter on the Capwiz page, to edit or personalize if you wish.

This is very important – people with disabilities should should be treated as patients by medical
professionals – not as potential organ donors!