Pallimed Blogger Doc Not Happy with Organ Procurement Proposals

bioethics, donation after cardiac death, organ transplants, Our News & Commentary Blog, palliative care, pallimed, ,

Christian Sinclair, a palliative care and hospice physician who writes on the Pallimed blog, caught the NPR story on the Organ Procurement and Transplantation Network/United Network for Organ Sharing (OPTN/UNOS) meeting earlier this week to issue new sweeping rules on “Donation after Cardiac Death.”

Good news, for now, BTW.  We have been informed that the new guidelines have been tabled.

Sinclair was especially alarmed by statements made by Dr. Stuart Youngner in the audio version of the NPR story that – quite frankly – we missed.  Excerpt from Proposed Changes to Organ Donation Blur the Line on End of Life Care:

Rolling into work this morning, NPR reported on a radical change in organ donation policies which could profoundly change how palliative care is perceived and how families and health care professionals make those very challenging decisions at the end of life.  At the heart of the effort is an attempt to increase the number of organ donors of course but the ethical question is in how to achieve that noble goal. Among the changes under consideration is the ability for hospitals and organ procurement organizations (OPOs) to make their own policies on how to approach families and patients about organ donation instead of following national guidelines.

I’ve have worked with OPOs in the hospital setting and have had overall some very good professional and ethical experiences.  But allowing too much individual variation could lead to abuses of the system which would negatively impact patients and families.  Why wouldn’t their be best practices from which all the sites could rely on? To go from national standards to individual policies that could be unduly influenced seems to be a regression of ethics.

There must always be a clear line between the clinical team treating the patient and the team with the skills and ability to harvest organs from a deceased patient.  That has been a long held standard of transplant ethics and is reinforced in the story by a bio-ethicist, Dr. Stuart Youngner.  In the audio version of the story (not the print version) Dr. Youngner also mention that in one hospital he works with the organ transplant team tries “to be introduced to families early, not as organ procurement organizations but as end-of-life care specialists.“

(I’d point out that if Dr. Sinclair followed the NDY blog or followed us on twitter, he’d have known about this a lot sooner. The fact is, groups and individuals alarmed about these proposed changes are responsible for getting NPR’s attention.  Transplant advocates don’t seem to want a public discussion and haven’t been reaching out to the press to publicize the proposed changes.)

NPR’s Morning Edition Covers the Organ Procurement Debate

bioethics, donation after cardiac death, national catholic partnership on disability, OPTN, Organ Procurement and Transplantation Network, organ transplants, Our News & Commentary Blog, Rob Stein, Stephen Mikochik

NPR’s Morning Edition included a segment on the policy debate regarding organ procurement taking place June 24 and 25 at the Board meeting of the Organ Procurement and Transplantation Network/United Network for Organ Sharing (OPTN/UNOS) in Richmond, Virginia.  Not Dead Yet issued a press release on this subject last week: Not Dead Yet Urges Secretary Sebelius and Organ Procurement and Transplantation Network to Prohibit Organ Procurers from Pressuring Sick or Injured to Give Up on Living.

Rob Stein, the NPR Reporter, covered this issue in September 2011 when he wrote a piece for the Washington Post entitled “Changes in controversial organ donation method stir fears.”

According to his report today on NPR:

The board of directors of the United Network for Organ Sharing will open a two-day meeting at the organization’s headquarters in Richmond, Va., to consider new guidelines for donation after cardiac death.

Donation after cardiac death involves removing organs minutes after life-support has been stopped . . ..

They’re generating debate over when the possibility of organ donation should be raised with patients or their families. The guidelines say local hospitals and organ procurement organizations should decide individually how to handle that question.

“I’m worried about it,” says Dr. Stuart Youngner, a bioethicist at Case Western Reserve University, noting that there’s long been a clear line between the decision to discontinue care and to donate organs.

“From the beginning the organ transplantation establishment has recognized that you must keep them separate,” Youngner says. “You must keep the people who are taking care of and making decisions about the potential donor separate from those who are trying to get an organ to put it into the recipient.”

Even within OPTN/UNOS, there is disagreement with the proposed guideline, with the Ethics Committee holding to the previous standard and the Organ Procurement Committee advocating for a guideline that allows individuals and families to be approached about organ donation before a decision to withdraw life-support has been made.

The online NPR article quoted Not Dead Yet, although the audio broadcast did not:

The proposal is raising concerns among advocates for the disabled. “Pressure could be brought to bear on people to give up on saving their lives and give away their organs,” says Diane Coleman of the group Not Dead Yet, which seeks to protect rights of the disabled.

The online article and audio broadcast included some well articulated comments from Stephen Mikochik, a Temple University law professor with a disability who has previously weighed in on the organ procurement issues on behalf of the National Catholic Partnership on Disability.

. . . Stephen Mikochik, of Temple University’s law school, worries about certain situations, such as when parents rush to the hospital and discover a child has suffered severe brain injuries in a car accident.

“You’re going to be extremely upset. And if a physician comes in and says, ‘Look, the prognosis doesn’t look very good.’ And then a procurement officer comes in and says, ‘Well, look, let’s make something meaningful out of this.’ You might decide right then to agree to take the person off life-support so some of the organs can be harvested,” says Mikochik, who works with the National Catholic Partnership on Disability.

“The problem is that it could well be that your child will, you know, regain some consciousness,” he says. “There’s just no telling at that point.”

Mikochik’s letter to the OPTN/UNOS Board is available on the NCPD website.

Not Dead Yet also sent an Action Alert asking disability activists to email Health and Human Services Secretary Sebelius, who contracts OPTN/UNOS, and five PTN/UNOS Board officers to urge the adoption of a national standard that would protect people on life support from aggressive organ procurement practices.  As of today, 117 disability activists emailed the  requested letters.  I don’t have any reports on the meeting yet, and I’m not sure how long it will take to learn the outcome, but stay tuned.  This issue is not going away. – Diane Coleman

NDY quoted in Pew Trusts’ Stateline: New End-of-Life Measure Quietly Sweeps the Nation

california, Connecticut, Delaware, Do-Not-Resuscitate, futility, Huffington Post, life-sustaining treatment, new jersey, Our News & Commentary Blog, Pew Charitable Trusts Stateline, POLST, protection and advocacy, Second Thoughts

This week, the Pew Charitable Trusts’ Stateline carried an article entitled “New End-of-Life Measure Quietly Sweeps the Nation.”  The measure described is Physician Orders for Life-Sustaining Treatment (POLST), sometimes also called Medical Orders for Life-Sustaining Treatment (MOLST).  According to the National POLST Paradigm website, POLST originated in 1991, and 14 states had adopted it by 2004, when the National POLST Paradigm Initiative Task Force formed to expand the practice.

This blog has only covered POLST twice, once regarding the Illinois program and once regarding the New Jersey POLST bill.  A POLST is a medical order, signed by a physician, instructing a health care provider about what types of life-sustaining treatment to provide or withhold.  The instruction is supposed to be based on the wishes of the individual or their authorized surrogate health care decision maker.  The National Task Force “strongly recommends” that the patient or surrogate signature also be required, but not all states have adopted that requirement.

A primary concern about POLST is whether an individual’s POLST form actually reflects their wishes, and whether the individual’s wishes are based on informed consent.  Other forms of advanced directives in which people designate their health care wishes are not signed by physicians, so they need to be translated into medical orders to direct health care provider behavior, but POLST is a medical order that is effective immediately.  If you or someone else calls 911 in an emergency, the emergency medical technicians (EMTs) know to look for a POLST form and to do what it says.  If the POLST form says “do not resuscitate”, then the EMT’s are supposed to comply.

The Stateline article briefly but accurately reflects the disability community’s concerns as follows:

Some disability rights groups have focused on the issue of patient signatures. Without one, according to Diane Coleman, president of the disability rights group Not Dead Yet, “How do we know the POLST medical order actually reflects the desires of the individual?”  Coleman worries that depending on how POLSTs are presented, they can make life-sustaining treatments—such as the use of feeding tubes—seem unbearable, even though many disabled people are able to live full lives because of them.

The reporter, Michael Ollove, also interviewed Cathy Ludlum from Second Thoughts Connecticut, and noted that:

Disabled rights groups lobbied successfully against POLST in Connecticut this year.

I don’t know about you, but successful lobbying against a mainstream bill by a disability rights group is not something I read about every day.  Second Thoughts CT developed an effective flyer, researched with citations, to talk about the concerns they had with the bill.  Among other things, the flyer said:

While MOLST is intended for people with about a year to live, there is a real danger that people with chronic and severe disabilities will get swept in as well.  In California, nursing facilities pressured all patients to have a POLST, whether or not they were terminally ill.  Delaware recently suspended its MOLST for similar reasons.  People with years ahead of them are often considered “terminal” by medical professionals not familiar with the disability world.  … Many of these concerns could have been addressed if people with disabilities had been at the table designing Connecticut’s MOLST pilot.

Connecticut’s research was very helpful to me and led me to some additional resources.

The Stateline article was picked up by the Huffington Post, which received 78 comments, including several by Stephen Drake, who went toe-to-toe with other commenters, and myself.  As Stephen noted, “If the patient or surrogate signature isn’t required, this document is less about safeguarding the rights and preferences of the patient than it is relieving some perceived burden of uncertainty on medical providers.”

My comment passed on the information that I got from CT, and connected the dots between POLST concerns and futility policies:

Some problems with POLST implementation have come to light.  Delaware suspended use of its POLST form when it was found that it was being used for people who did not meet the state’s criteria for POLST eligibility in that they were not terminal.  In California, the state protection and advocacy agency issued a report documenting a case alleging that an individual’s physician revised his POLST form to say the opposite of the patient’s expressed wishes to receive life-sustaining treatment.    It is perhaps a little known fact that many states allow doctors to overrule a person’s choice to receive life-sustaining treatment under “futile care” policies.  (See http://medicalfutility.blogspot.com.)  A balanced approach to POLST policy development must take these realities into account.

That last sentence sums it up for now. – Diane Coleman

Press Release: Not Dead Yet Urges Secretary Sebelius and Organ Procurement and Transplantation Network to Prohibit Organ Procurers from Pressuring Sick or Injured to Give Up on Living

brain injury, donation after cardiac death, HHS, Institute of Medicine, life-sustaining treatment, OPTN, organ donation, Organ Procurement and Transplantation Network, Our News & Commentary Blog, Press Releases, Second Thoughts, United Network on Organ Sharing

Summary:  Not Dead Yet, a national disability rights organization, is calling upon Health and Human Services Secretary Kathleen Sebelius and the Organ Procurement and Transplantation Network to adopt national standards prohibiting organ procurement staff from initiating organ donation discussions with individuals or family members before they have made a decision to withdraw life-sustaining treatment. The OPTN Board is scheduled to vote at its June 24-25 meeting on a policy allowing individual hospitals to set their own organ procurement standards regarding the timing of such discussions.

Rochester, NY (PRWEB) June 20, 2013

Not Dead Yet, a national disability rights organization, is calling upon Health and Human Services Secretary Kathleen Sebelius and the Organ Procurement and Transplantation Network to adopt national standards prohibiting organ procurement staff from initiating organ donation discussions with individuals or family members before they have made a decision to withdraw life-sustaining treatment. The OPTN Board is scheduled to vote at its June 24-25 meeting on a policy allowing individual hospitals to set their own organ procurement standards.

“A year ago, over 200 disability advocates sent messages to the Organ Procurement and Transplantation Network (OPTN), expressing concern over proposed organ procurement protocols,” said Diane Coleman, President and CEO of Not Dead Yet. “These proposals would have allowed organ donation to be discussed with individuals who depend on life sustaining treatment and their families before a decision to withdraw life-sustaining treatment has been made. This could affect people with upper spinal cord injuries, neuromuscular disabilities and severe brain injuries.”

Not Dead Yet filed public comments regarding both the proposed protocols, which pertain to organ donation after cardiac or circulatory death (as distinguished from brain death), and related changes to OPTN bylaws on January 3, June 14 and August 28, 2012. Responses to these and other comments are set forth in an OPTN/UNOS Briefing Paper concerning what is titled “Proposal to Update and Clarify Language in the DCD Model Elements.”

“We pointed to longstanding ethical protections against potential pressures being placed on ill people to die and donate their organs,” says Coleman, “protections consistent with recommendations made in 2000 by the Institute of Medicine 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.’”

John Kelly, Director of Second Thoughts and a member of Not Dead Yet’s Board, has a high-level spinal cord injury and drives his power wheelchair with a sip-and-puff tube. “I am terrified that a newly injured person, already in devastating grief and shock, could get the message that their death would mean more to the people around them than their life, based on the requirement (temporary or long-term) that the person use a ventilator,” said Kelly. “Such a policy could tip the balance between someone deciding to die rather than learning again to live – both studies and my own personal experience show that post injury, we often reach a quality of life as good (or even better) than before. On the way to getting there, the last thing newly injured people need is communication implying that their organs may be more valuable than their lives.”

According to the Briefing Paper, in response to previous public comments, OPTN withdrew and revised organ procurement protocols and are again being presented for an OPTN Board vote. Rather than setting a national standard, the new proposal would allow hospitals to set their own standards regarding the timing of organ donation discussions and other issues.

According to new comments filed by Not Dead Yet on June 19, “By deferring to ‘hospital policy’ on such crucial issues, this proposal is both anti-scientific and anti-patient-rights. This type of local control is no better than ‘states rights’ when federal civil rights are needed to protect a devalued or disenfranchised group. OPTN/UNOS should be providing leadership in protecting individual rights, not deferring to hospital autonomy and announcing that ‘anything goes.’”

The comments urge alternative language to protect the interests of potential organ donors as well as safeguard public trust in the integrity of the organ procurement and transplantation system.

A pdf-formatted version of the release with related attachments is available at: http://www.prweb.com/releases/2013/6/prweb10852604.htm – Diane Coleman

Release: In Honor of World Elder Abuse Awareness Day, Not Dead Yet Urges Elder Abuse Professionals to Speak Out Against Risks of Legalizing Assisted Suicide

abuse, assisted suicide, elder abuse, margaret dore, Our News & Commentary Blog, Press Releases

Rochester, NY (PRWEB) June 15, 2013

June 15 is World Elder Abuse Awareness Day. In honor of the day, Not Dead Yet, a national disability rights group, urges elder abuse professionals to speak out against legalization of assisted suicide.

“Most states reject assisted suicide,” says Diane Coleman, Not Dead Yet’s President and CEO. “Assisted suicide is legal in just three states. Oregon and Washington enacted their laws in 1997 and 2008. Last month, Vermont enacted its law.”

A major concern among disability groups is the risk of abuse of elders and people with disabilities. “The clearest explanation that I’ve heard about the problems with abuse in the context of assisted suicide come from elder law attorney, Margaret Dore,” says Coleman. “Margaret calls assisted suicide laws a ‘recipe for elder abuse.’ She has probably done more than anyone to connect the dots between what is known about elder abuse and the specific provisions of assisted suicide legislation.”

In a recent article about Vermont’s new law, Dore highlighted two elder abuse studies published by the Met Life Mature Market Institute. “In the first study, from 2009, the estimated annual financial loss by victims in the United States was $2.6 billion,” Dore noted. “In the second study, from 2011, the estimated loss was increased to $2.9 billion. Again, these are yearly figures. Elder abuse is a huge problem.”

Disability advocates are very concerned about the role of family members and other caregivers. Dore says, “The 2009 study also describes how perpetrators are often family members, some of whom feel themselves ‘entitled’ to the elder’s assets.” According to Dore, “The study describes how the abuse starts out with small crimes, such as stealing jewelry and blank checks, before moving on to larger items or coercing elders to sign over the deeds to their homes, change their wills, or liquidate their assets. The report also states that victims ‘may be murdered’ by perpetrators.”

Dore relates this to specific provisions in assisted suicide legislation. “With assisted suicide laws in Washington, Oregon and Vermont, perpetrators can instead take a ‘legal’ route, by getting an elder to agree to a lethal dose request. Once the lethal dose is issued by the pharmacy, there is no supervision over administration. Not even a witness is required. If the elder struggled, who would know?”

Proponents of assisted suicide claim that official reports from Oregon and Washington prove that assisted suicide is safe. According to Dore, however, these reports are a version of “Don’t Ask, Don’t Tell.” She says, “Required official forms and reports do not ask about or report on whether the patient consented at the time of death.”

“The official reports are not, however, useless,” says Dore. “They show that the majority of people who have died under the Oregon and Washington Acts have been well-educated. Typically, people with this attribute would be those with money, i.e., the middle class and above. The statistics also show that the majority of people dying have been age sixty-five or older. ‘Older people with money’ are a prime demographic for abuse.”

Some disability advocates believe that professionals in the field of elder abuse prevention have important knowledge to contribute to the assisted suicide debate. “So far, elder abuse professionals have not been very visible,” says Diane Coleman, “and that needs to change. Policy makers need a much deeper understanding of elder and disability abuse when they are weighing the pros and cons of assisted suicide legislation.”

A copy of the release in pdf format, including a summary and photo of Margaret Dore, is here. – Diane Coleman