Action Alert: Procuring organs from people with disabilities
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to condition eligibility for organ donation on assurances that a conscious patient’s decision to have life-support withdrawn is informed and voluntary and not a product of clinical depression or other factors that can be addressed such as the need for adequate attendant services and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!