Diane Coleman in New Jersey Star-Ledger: The dangerous ‘help’ of assisted suicide

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NDY president and CEO Diane Coleman wrote an op-ed that was published in yesterday’s New Jersey Star-Ledger.  Here’s the first half of the op-ed, titled “The dangerous ‘help’ of assisted suicide“:

Proponents of legal assisted suicide for the terminally ill frequently claim that the opposing views of disability organizations aren’t relevant.

Nevertheless, although people with disabilities aren’t usually terminally ill, the terminally ill are almost always disabled. This is one of many reasons our perspective may offer some insights on this complex issue.

People with disabilities and chronic conditions live on the front lines of the health care system that serves (and, sadly, often underserves) dying people. One might view us as the “canaries in the coal mine,” alerting others to dangers we see first.

Assisted suicide advocates paint themselves as “compassionate progressives,” fighting for freedom against the religious right. That simplistic script ignores inconvenient truths that are all too familiar to disability advocates, such as:

• Predictions that someone will die in six months are often wrong;

• People who want to die usually have treatable depression and/or need better palliative care;

• Pressures to cut health care costs in the current political climate make this the wrong time to add doctor-prescribed suicide to the “treatment” options;

• Abuse of elders and people with disabilities is a growing but often undetected problem, making coercion virtually impossible to identify or prevent.

It’s not the proponents’ good intentions but the language of assisted suicide laws that legislators need to consider.

Please read the rest of the op-ed here – and leave a comment (you can register with you Facebook account).

Press Release: Not Dead Yet Provides Video and Written Comments on POLST to Institute of Medicine’s Committee on Approaching Death

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For PRWeb’s pdf version of the Press Release, click here.  The public comments described in the release are available in a five minute video, the text of the video, and full written comments with citations.

Summary:  Not Dead Yet President and CEO Diane Coleman has submitted video and written public comments to the Institute of Medicine’s Committee on Approaching Death for its July 22-23 meeting being held in Houston, Texas. The public comments raise concerns about the implementation of Physician Orders for Life-Sustaining Treatment (POLST).

Houston, TX (PRWEB) July 23, 2013

Not Dead Yet President and CEO Diane Coleman has submitted video and written public comments to the Institute of Medicine’s (IOM) Committee on Approaching Death for its July 22-23 meeting being held at the Texas Children’s Hospital in Houston. The public comments raise concerns about the implementation of Physician Orders for Life-Sustaining Treatment (POLST). Not Dead Yet has twice previously submitted comments to the Committee, previously called the Committee on Transforming End-of-Life Care.

According to the IOM website, “The IOM Committee on Approaching Death: Addressing Key End of Life Issues will hold its third meeting on July 22 and 23, 2013 in Houston, Texas. There will be a public session on July 22 featuring panel sessions on ethics and spirituality. The public session on July 23 will focus on empirical and legal issues surrounding POLST (Physician Orders for Life-Sustaining Treatment).”

Public comments are limited to approximately five minutes, so Coleman has submitted a video focusing on two of the concerns raised in her longer written comments. The video comments address the dangerous and inappropriate use of POLST with people who are disabled but not terminally ill, and the bias against life-sustaining technologies conveyed in the way the POLST forms are presented by health care providers.

In her spoken comments, Coleman informed the Committee of a recent article in the Pew Trusts’ Stateline about POLST (New End-of-Life Measure Quietly Sweeps the Nation, June 20, 2013) which quoted her and reflected her concerns as follows:

“’How do we know the POLST medical order actually reflects the desires of the individual?’ [We worry] 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.”

In her more extensive written comments, Coleman called attention to documented evidence of problems from various states that have implemented POLST, including a Delaware state order discontinuing the use of POLST, and a February 2013 report from Disability Rights California entitled, The Deadly Failure of a Hospital to Follow a Patient’s Decisions About his Medical Care.

Coleman also addressed POLST provisions contained in a new federal bill called the “Personalize Your Care Act” that was introduced on March 14, 2013, by Representative Earl Blumenauer (D-Oregon):

“[The bill] would provide Medicare funding for physicians to have a conversation with their patients about “end-of-life care.” If done well, we agree that such a conversation can be a good thing, and I object to the ‘death panel’ accusations that obstructed rational discussion of such a provision in the Affordable Care Act.

“But there’s another section of the new bill, H.R. 1173, that would provide grants to promote POLST across the country. If we can conclude anything from the current level of information we have about how POLST is being implemented in the states that have it, it’s that many questions remain unanswered, strong reasons for concern exist, and federal funding to promote POLST is premature. The POLST provisions of H.R. 1173 should be amended to fund independent research to answer the serious questions and concerns that many have raised. That’s what the Institute of Medicine and this Committee should support.”

Marilyn Golden in Sacramento Bee: Assisted Suicide Fraught with Consequences

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On Sunday, July 14th, the Sacramento Bee published an excellent op-ed by Marilyn Golden countering a previously published piece promoting assisted suicide.  Here’s an excerpt from her response essay, titled “Assisted suicide fraught with consequences“:

Efforts to legalize assisted suicide have been attempted in California three times, each time failing due to broad bipartisan opposition that included major disability rights organizations, independent living groups, doctors, and civil rights and faith-based groups. Each bill failed because of precarious loopholes, dangerous provisions and insufficient oversight.

In Oregon and Washington, two states where assisted suicide is legal, there is virtually no oversight or regulatory authority. Just Google names such as Barbara Wagner, Kate Cheney or Randy Stroup and you will find tragic stories behind legalizing assisted suicide.

Please read the rest of her op-ed here.

Read more here: http://www.sacbee.com/2013/07/14/5563639/assisted-suicide-fraught-with.html#storylink=cpy

Pallimed Blogger Doc Not Happy with Organ Procurement Proposals

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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

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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