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

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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

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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

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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

Not Dead Yet Submits Written Comments to IOM Transforming End-of-Life Care Committee

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As folks who read this blog already know, the Institute of Medicine’s Transforming End-of-Life Care Committee sets aside a portion of its meeting agenda to receive public comments.  At the Committee’s second public meeting, held at Stanford on May 29, DREDF’s Marilyn Golden attended to provide public comments.

Not Dead Yet previously submitted written input concerning the composition of the Committee, particularly the lack of disability representation.  We didn’t receive a response to that submission, nor did the composition of the Committee change.

Since I was not able to attend in person, the Thursday before the second meeting, I wrote a letter requesting the opportunity to comment by telephone or Skype.  That was admittedly short notice for such a request, but I hoped I’d get lucky and prepared comments anyway, scrunching them into the three minutes provided for each speaker.

My hoped for accommodation didn’t work out (yet), but I adapted my planned remarks slightly for written format, added a few references, and submitted them this week.  There’s plenty more to say, but here’s a start.

Public Comment for the Institute of Medicine’s Transforming End-of-Life CareCommittee – By Diane Coleman, President/CEO, Not Dead Yet

Submitted June 4, 2013

My name is Diane Coleman and I’m the President and CEO of Not Dead Yet[i], a national disability rights organization focused on public policy related to many of the issues that this Committee will address.

Last Friday in upstate New York, the Democrat and Chronicle newspaper reported, “An appellate court has ruled that a feeding tube must be inserted for a severely disabled man … whose parents and attending physician did not want the use of the life-sustaining treatment.”[ii]  The New York Office for People with Developmental Disabilities sued on behalf of a 55-year-old man with cerebral palsy who faced increasing problems with aspiration pneumonia.  One of his nurses said that he is “alert, awake and communicative, and that he enjoys social interaction and activities.”  Because the state challenged the hospital and parents in court, and then appealed a negative lower court ruling, the man will live.

On May 24, 2012, National Disability Rights Network, or “NDRN”, the national association of protection and advocacy agencies federally charged to protect the civil rights of people with disabilities, issued a report entitled “Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights.”[iii]  After recounting several case stories, the report condemned decisions to withhold medical treatment from individuals with disabilities without a terminal condition or permanent unconsciousness as a denial of the basic constitutional rights of individuals with disabilities.

The report stated that reliance on ethics committees and consultations are insufficient protections of a patient’s legal rights and that hospitals and other providers must “establish and implement due process protections….”

I’ve communicated with protection and advocacy attorneys in several states who had to go to court to try to save a disabled person’s life from a decision made by a surrogate or unilaterally by a doctor or hospital.  Against the odds and because of their intervention, lives have been saved in Illinois, Connecticut, Kansas, Montana, Pennsylvania and New York.  That’s just from my limited knowledge.

The recommendations contained in the NDRN Report constitute nothing less than a call to conscience for health care providers who are withholding life-sustaining treatment from people with disabilities who are not otherwise dying. Sometimes this is done at the request of family members or other surrogates, who are often persuaded or even pressured by the health care providers themselves.  Sometimes treatment is withheld based on the unilateral decision of the health care provider under what are often termed “futile care policies.”

A central problem is physicians’ “quality of life” judgments.  Research shows that physicians devalue the quality of life of people with disabilities compared to our own assessments.[iv] Doctors are not immune from the bias against disability that prevails in society overall.

From our perspective, there is an imbalance in end-of-life policy-making because it has ignored the problem of under-treatment of people who, but for the under-treatment, would not die.  In other words, sometimes “end-of-life” really means ending lives.  The first step in addressing this problem is admitting that it exists, and I would urge this Committee not to shy away from a serious examination of this problem despite the discomfort and other challenges that would accompany such an effort.

What the NDRN report emphasizes is that people with disabilities are entitled to constitutional protections when third parties are seeking to withhold life-sustaining treatment.  Anything less is unacceptable.

Like I said, it’s just a start.  To be continued. – Diane Coleman

Attorney Anne Studholme on New Jersey “Dom Time” Show Opposite NY C&C Director David Leven

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On May 14, NDY’s attorney in New Jersey, Anne Studholme, squared off against New York Compassion & Choices Director David Leven on New Jersey’s “Dom Time” show, a news and call-in show hosted and moderated by Dom Giordano.

We first got to know Studholme when she represented NDY, ADAPT, NCIL, AAPD, NSCIA, Center for Self-Determination and Disability Rights New Jersey (the NJ protection and advocacy agency) in filing a friend-of-the-court brief in a major medical futility case.

This year a bill to legalize assisted suicide has been introduced in the New Jersey legislature.  When the Assembly Health and Senior Services Committee held a hearing on the bill on February 7, Studholme testified on NDY’s behalf.  The bill passed that committee, but has still not been addressed by the full Assembly.

When Giordano proposed to devote a segment of his program to the assisted suicide issue, Studholme stepped up again.  The show was posted to YouTube in three segments:

Dom Giordano’s Dom Time Show 031 Seg #1

Dom Giordano’s Dom Time Show 031 Seg #2

Dom Giordano’s Dom Time Show 031 Seg #3/4 Close

In the first portion, Studholme challenged the assumption many people have that pain is the problem addressed by legalizing assisted suicide.  She pointed out that even in the rare cases in which palliative care is insufficient to relieve pain, palliative sedation is an available alternative.

The short sound bite format let the Compassion and Choices speaker make his simplistic point about “shouldn’t everyone have this right?” over and over.  However, the bill does not create a new patient right, since suicide is not illegal in any state.  The actual bill language is to legally immunize physicians and other participants who assist suicide.  It carves out an exception to existing laws regulating doctors and other third parties.

The second segment included the best back-and-forth debate of the three parts.  Giordano, the host, said he agreed that palliative care has come a long way, also noting the potential for pressures due to health care costs.  Leven admitted that pain is not the issue.  Giordano also acknowledged the concern, particularly among disabled people, that the message in assisted suicide is that some life has less worth.  Studholme responded about the high level of elder suicide in Oregon (apart from the assisted suicide law there).  She pointed out that people may fear loss of autonomy, being a burden, and fear being disabled because of how people are treated.  She noted that people who choose assisted suicide tend to be male, educated and well off.  Both guests admitted that the six-month prediction of terminality is not reliable.

In the third and shortest segment, Giordano alluded to the uncertainties of medical information and expressed concern about the risk of a snap decision. Leven replied that there is a two-week process, as though that is a sufficient time to consider such an irreversible decision.  (These days, how many of us can get an appointment with a specialist for a second opinion in two weeks?)  Giordano asked why not allow this?  Leven said that a small number of people use the law, while Studholme tried to point out the problems with carving out an exception to current law for this small group.  Studholme noted that the two witnesses (who attest that the request for assisted suicide is voluntary and not coerced) don’t even need to know the person.  Then the clock ran out on the show.

New Jersey advocates who oppose the assisted suicide measure say that the legislative process could well extend into the fall and winter.  If so, the discussion on “Dom Time” was just the beginning.  Regardless, the disability community is in it for the long haul. – Diane Coleman