A review of evidence supporting certain disability rights concerns about “end of life” advocacy

Workshop presentation made by Diane Coleman, JD, CEO, Not Dead Yet at the 3rd International Society of Advance Care Planning and End of Life care Conference, May 31, 2012

View/download PDF of PowerPoint Presentation (1.5 MB)

Let me begin with a CASE STUDY: Bill’s Story

Bill, a paraplegic anthropology professor, was hospitalized for a stage 4 pressure sore. One night, a “hospitalist” visited him:

“He grimly told me I would be bedbound for at least six months and most likely a year or more. That there was a good chance the wound would never heal. If this happened, I would never sit in my wheelchair. I would never be able to work again.

“Not close to done, he told me I was looking at a life of complete and utter dependence. …medical expenses. Bankruptcy. Insurance running out. Ending up in a nursing home.”

“His next words were unforgettable. . . He informed me I had the right to forego any medication, including the lifesaving antibiotics. If I chose not to continue with the current therapy, I could be made very comfortable. . . . Although not explicitly stated, the message was loud and clear. I can help you die peacefully.”

Until recently, Bill never told anyone about what transpired, because he was scared.

This morning I talked about the imbalance of an advance care planning process that has focused almost solely on the problem of overtreatment of dying people and almost completely ignored the problem of undertreatment.

How did the system get so imbalanced? Essentially, Last Acts and Partnership for Caring, which led these efforts in the US for about 15 years, shut out other voices, including the disability community.

According to Dr. Ira Byock, author of Dying Well and one of the founders of Partnership for Caring, “It was a deliberate decision — and it was irresponsible.”

The first step to addressing the weaknesses of advance care planning is admitting that weaknesses exist.

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. Doctors are not immune from the bias against disability that prevails in society overall. If anything, doctors may view us even more negatively – after all, they mainly see us when things aren’t going well.

In addition to the examples I gave this morning (I’ll quickly review them in a few minutes), some other situations have been front and center in the disability community lately.

In January, a case in Pennsylvania hit the blogosphere and social media involving Organ Transplant Eligibility.

The mother of a young disabled girl named Amelia wrote a piece she called “Brick Walls”. In it she said, “I am going to try and tell you what happened to us on January 10, 2012, in the conference room in the Nephrology department at Children’s Hospital of Philadelphia. . . . We are in the year 2012 and my child still does not have the right to live, the right to a transplant, because she is developmentally delayed.”

Following a national petition drive and negative publicity, the hospital’s position changed or, judging from the article in USA Today, at least the hospital distanced itself from the doctor’s statements to Amelia’s parents about her ineligibility for transplant due to her intellectual disability (the doctor used the R-Word). 

Another issue that cropped up late last year involves proposals from the Organ Procurement and Transplantation Network and United Network for Organ Sharing. The disability community found out about proposals to expand organ procurement from people with upper spinal cord injuries and “end stage” neuromuscular disabilities.

I believe in organ donation and have friends who need organs, but I have to say that I take this one personally because I had my first brush with respiratory failure last year. The proposal was to delete an existing protection preventing organ transplant people from talking to families before a decision to withdraw life support has been made.

The proposal deleted that protective language and then added what appears to be the first specific language stating that certain disabled people would be eligible for organ donation after circulatory death.
“1. A patient with a permanent and irreversible neurological injury (i.e. upper spinal cord injury), or permanent and irreversible disease (i.e. end-stage musculoskeletal or pulmonary disease) that results in necessary life-sustaining medical treatment or ventilated support may be a suitable candidate for DCD. . . .” (UNOS Proposal to Update and Clarify Language in the DCD [Donation After Circulatory Death] Model Elements, March 2011)

By the time the disability community saw this proposal, the comment period had expired, so a number of organizations including Not Dead Yet wrote to express our concerns, to urge that the comment period be reopened, and to urge that UNOS reach out to groups representing the affected people.

We do not want to see the potential for organ donation become a factor that weighs in favor of withdrawing life-sustaining treatment. We understand that disabled people who are newly injured or having an increase in disability and our families can face some distressing changes, and that is just not the time for others to suggest or however unintentionally imply that the person’s organs may be worth more than their life.

I’ve had to think about what the disability community could have brought to the advance care planning discussion if we’d been involved from the beginning. In fact, I’ve seen a lot of research money spent demonstrating things that we could have told health care professionals based on our experiences.

For one thing, many disabled people once thought they’d rather die than be significantly disabled, but reality changed their minds. Your research says the same thing.
Of course, sometimes it takes a while to grieve the losses related to disability, many of which are more social than physical.

As an aside: This is a big reason that disability organizations like United Spinal and the National Council on Independent Living oppose legalization of assisted suicide. People who are glad to be alive know that they might not have made it through if assisted suicide were legal.

There seems to be a fair amount of consensus that it’s difficult to predict when someone is within six months of death. In one study, 17 percent of patients [outlived their prognosis] , in another 13 percent of hospice patients around the country outlived their six-month prognoses. …

One study looked at patients with three chronic conditions—pulmonary disease, heart failure, and severe liver disease— and they found that 70 percent of the 900 patients eligible for hospice care lived longer than six months.

Enough disabled people have survived predictions that they would die that our community can’t help but be skeptical about terminal labels.

This morning, I mentioned some other issues that the disability community has a unique perspective on.

Elder abuse is too often perpetrated by families. Sadly, the same is true of disability abuse, and research shows that people with disabilities of all ages are more likely to be abuse than their non-disabled peers.

Part of our concern about this is the fact that these same family members may be in the role of surrogate health care decision maker. I’ll never forget the time that a professionally employed disabled woman asked if Not Dead Yet could be her surrogate. She said that she couldn’t trust her family. We’re not in a position to do that, but the need is there.

This morning, I also mentioned the recent research showing that roughly half of doctors just assume that an advance directive always means a refusal of treatment.

And I talked about futility policies, which allow doctors to overrule advance directives which say that the patient wants certain life-sustaining treatment. Thirteen years ago, JAMA carried an article on futility that examined the varied definitions of futility and concluded that a procedural approach to the issue was more functional.

The article provided a flow chart type of diagram to suggest procedures that the doctor could follow to try to persuade the patient or family to forego treatment, including things like second opinions, an ethics committee. The majority of states adopted legislation that establishes some type of guideline and creates a legal safe harbor against liability for withholding treatment if the procedure is followed.

Finally this morning, I talked about Rush to Judgment, that is medical predictions that are made when it is actually too early to reasonably give a prognosis. A leading neurologist, Dr. Joseph Fins, said that “It is not uncommon for doctors to assume the worst and advise family members to withdraw care early. and he said “It’s wrong to be so uniformly fatalistic so early on, especially with all the data emerging about the prospects for later-stage recovery.”

The disability community is increasingly concerned that the lives of newly injured people are being ended who 10 or 20 years ago would have been given the chance and the encouragement to survive.

The last thing I want to again recommend is the National Disability Rights Network’s groundbreaking report Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights, which is online at www.ndrn.org

Steps need to be taken, beyond what is happening now.

Ethics committees and consultations aren’t enough. Statutory surrogates who are not appointed by the person are not enough. The report says “when … there is a perceived or actual conflict between the desires of parents or guardians and the civil and human rights of a person with a disability, but I would suggest that there’s almost always the potential for conflict of interest with family. Nowadays there is an almost incessant barrage of messages about the burdens of care giving, while people who need help in activities of daily living are almost never consulted.

Most people don’t realize what the disability rights community has been doing to expand home care, from policy wonkery at all levels of government to action in the streets. We’ve made many gains over the years, but now is a very threatening time. I’m sure some of you have heard of the Ryan plan to cut Medicaid, which pays for a huge portion of long term care in the US. Only a month ago 74 people in wheelchairs, and supporters, including Hollywood actor Noah Wiley, were arrested for occupying the Cannon Building rotunda in Washington, DC chanting My Medicaid Matters. I was one of those 74. And the struggle for home care continues every day.

At this point in history, most people understand that if policy makers want to talk about women’s issues, then women must be at the table, and if they want to talk about gay and lesbian issues then gays and lesbians better be at the table, and similarly for other groups, except it seems, people with disabilities.

One of the disability community’s favorite mantras is Nothing About Us Without Us.

A constructive relationship between the disability and palliative care communities could be developed if people with disabilities are first “at the table.”

View/download PDF of PowerPoint Presentation (1.5 MB)