Supplementing Your Advance Directive With A Video

"end of life", advance directives, Dr. Ferdinando Mirarchi, Health care decision-making, life-sustaining treatment, Live On!, Our News & Commentary Blog, POLST,

Kaiser Health News recently carried an article encouraging people to create videos to help explain what’s in their advance directives, which are often overly complex legal boilerplate or overly simplistic checkbox forms.

One thing I like about the article, Straight From The Patient’s Mouth: Videos Can Clearly State Your End-Of-Life Wishes, is the discussion of how different situations that might arise could impact an individual’s treatment decisions.

The article starts with an individual:

For years, Wendy Forman, considered how to make her wishes known if she became horribly ill and couldn’t speak for herself.

She prepared a living will refusing cardiopulmonary resuscitation.

She assembled orders instructing medical personnel to refrain from putting in a feeding tube or placing her on mechanical ventilation.

She told her husband and her daughters “no lifesaving measures” under any circumstances if she were unconscious and incapacitated.

“I was terrified of losing control,” this 70-year-old Philadelphia therapist said. 

Then, earlier this year, Forman heard of a Pennsylvania physician who was helping people prepare “video advance directives” — videotaped statements expressing their preferences for end-of-life care.

The article links to a few organizations that have video projects or resources for advance directives, and the formats vary. Here’s one of them described in the article:

The Institute on Healthcare Directives’ videos are carefully scripted and usually last 45 to 90 seconds. The goal is to convey essential information to physicians making crucial decisions (perform manual chest compressions? insert a breathing tube?) in time-pressed emergency medical situations. 

[Institute founder Dr. Ferdinando] Mirarchi helps draft scripts after taking a careful medical history, explaining various types of medical situations that might arise, and discussing clients’ goals and values in considerable depth.

And here’s my favorite part of the article:

After consulting with the doctor, Forman realized her “do nothing” instructions could prevent her from being treated for medical crises that she might recover from. Now, her video states that if someone witnesses her having heart attack and she can receive medical attention within 15 minutes, resuscitation should be tried.

“I came to see that in my zeal to have my wishes known and respected, I was going to an extreme that didn’t really make much sense,” she said.

It’s fortunate that Ms. Forman went to Dr. Mirarchi, who’s done several studies on the implementation of advance directives, including their misinterpretation and other concerns that might result in people being denied treatment they would actually want. (Too bad it’s not quite as straightforward to explain how people find out by experience why it’s good to Live On! with a disability when many used to think it would be better to be dead than disabled!)

NDY covered some of Dr. Mirarchi’s work in a 2015 blog that ends with a very nice music video on the subject by his colleague Dr. Michael Barton. Readers can learn more about their work at Institute on Healthcare Directives.

I remain as skeptical as ever about the preparation, uses and abuses of treatment specific advance directives (as distinguished from appointment of a proxy), but our society is stuck with them, so videos may be a chance for improvement. Mine would start out, with my motorized wheelchair and breathing mask visible, “Yes, no kidding, I really love my life!” – Diane Coleman

NDY Board Member Mike Volkman Writes About Assisted Suicide and “Dignity” in Albany Times Union

assisted suicide, Mike Volkman, New York State, op-ed, Our News & Commentary Blog, , ,

Mike Volkman is a long-time member of Not Dead Yet’s Board of Directors. Mike joined Not Dead Yet at its inception in 1996. He had been on the staff of the Capital District Center for Independence in Albany, New York, and later was on the Board of Directors. He has written op-ed columns for his local newspaper, the Times Union, and remains a tireless advocate for the rights of people with disabilities.

On 10/27/17, the Albany Times Union published an op-ed by Mike, in which he picks apart the complicated relationship between assisted suicide and the mostly-undefined concept of “dignity.”

Below is an an excerpt from “Death with dignity devalues disability.”

What does it mean to die with dignity? Or the opposite, what is death without dignity or with indignity? There is no legal definition. It is a phrase people like to use with the hope that it is sufficient and accepted. Remember the bit George Carlin did in 1992 about euphemisms? They hide the truth.

Legislative bodies should come up with legal definitions for the term. They should specify what constitutes dignified ways of dying. When they come to define what are undignified ways of dying, the challenge is how to do it without describing circumstances that go with disability.

Please go read this op-ed in its entirety here. For one thing, it’s a great op-ed. Also. newspapers track how people access their articles. If a lot of us access the essay, it lets the paper know that there are lots of us who would like to hear from disability rights activists/advocates in general and from Mike in particular.

My Letter To the Victorian Parliament

"death with dignity", "special", aid in dying, assisted suicide, Australia, euthanasia, Our News & Commentary Blog, , ,

[Apologies to those who’ve already seen this letter, which I emailed to the members of Parliament in Victoria, Australia on Monday at the request of Margaret Dore. It’s different from my usual letter, more personal. Margaret’s Choice Is An Illusion and the Euthanasia Prevention Coalition both shared it, which I appreciate and so, a bit belatedly, it’s here as well. Sadly, a close majority decided to ignore the dangers of the bill and passed it, making it the first Australian state to do so. While most people’s eligibility is based on a six-month prognosis, the bill includes a “special” provision extending that “to 12 months for people with neurodegenerative diseases such as Motor Neurone Disease.“]

Neuromuscular conditions and the definition of “terminal”

I am writing behalf of Not Dead Yet, a national disability rights group in the U.S. that opposes legalization of assisted suicide. We understand that a proposal in Victoria would pertain specifically to neuromuscular disabilities. This letter will focus on misdiagnosis and the uncertainty of terminal predictions by doctors, as well as the significance of breathing support for those of us with these conditions. My own experience illustrates the issues.

At the age of six I was misdiagnosed as having muscular dystrophy and my parents were told that I would die by the age of 12. A few years later I was re-diagnosed with spinal muscular atrophy, a progressive neuromuscular condition which has a longer lifespan. Since age eleven, I have used a motorized wheelchair. Beginning 17 years ago I have used breathing support at night. The type of support I need is called a BiPAP. Over the years, the pressures required to sustain my breathing increased.

I am now age 64. Four years ago, the doctors determined that I do not have spinal muscular atrophy, and I am now diagnosed with another neuromuscular label, congenital myopathy. About two and a half years ago, I went into respiratory failure. Since then I have used breathing support most of the day as well as at night. If I did not use this support, I would likely have respiratory failure within a few days at most. Under most definitions, I qualify as “terminal,” even though I have already lived two and a half years this way.

Throughout my adult life, I have worked full time, first as an attorney and then directing nonprofit disability related organizations. Over the last two years, I have continued to run Not Dead Yet, which has four staff and numerous volunteers across the country. I have spoken at conferences, published articles, been interviewed by at least 20 press outlets, submitted testimony in legislatures, and provided the day-to-day management an organization requires.

As a severely disabled person who depends on life-sustaining treatment, I would qualify for assisted suicide at any time if I lived where assisted suicide is legal. If I became despondent, for example if I lost my husband or my job, and decided that I wanted to die, I would not be treated the same as a nondisabled and healthy person who despaired over divorce or job loss. Where assisted suicide is legal, I would be treated completely differently due to my condition.

This is just one example of how slippery the definition of terminal really is. Under assisted suicide policies, many people with disabilities would qualify for assisted suicide and be denied the suicide prevention and other supports that nondisabled people could take for granted if they expressed a desire to die. Assisted suicide laws are inherently discriminatory against old, ill and disabled people.

We urge you to vote no on the assisted suicide bill. The dangers of mistakes and abuse are simply too high, not only for people like me, but for everyone.

Diane Coleman, JD, MBA
President/CEO
Not Dead Yet

Anita Cameron Awarded for Service to the Self-Advocacy Movement

Anita Cameron, Autistic Self-Advocacy Network, Our News & Commentary Blog,

A week ago today in Washington, D.C., the Autistic Self Advocacy Network (ASAN) presented Anita Cameron, NDY’s Director of Minority Outreach, with its 2017 award for Service to the Self-Advocacy Movement.

Anita was introduced by Samantha Crane, ASAN’s Legal Director and Director of Public Policy, and the incoming Board Chair of NDY.  ASAN’s write up about Anita in the award announcement said:

Anita Cameron has been involved with community organizing across social justice movements for 36 years. She is an ADAPT media liaison and has been at the forefront of this year’s civil disobedience actions to protest attacks on Medicaid and the Affordable Care Act. She has experience working on transportation issues, LGBT+ issues, emergency preparedness for people with disabilities, and a variety of other social causes. Anita is a proud autistic activist of color and serves as Director of Minority Outreach at Not Dead Yet.

People who follow Anita’s work saw her interviewed in numerous articles over the summer in the fight for healthcare and home and community based long term care services. Examples are:

The ASAN gala event featured a keynote address by Judy Heumann, an internationally recognized leader in the disability community and lifelong civil rights advocate for people with disabilities. ASAN’s Executive Director Julia Bascom gave a powerful speech and call to action at the event as well.

Congratulations to Anita Cameron! We are *very thankful* to be working with her in the fight for our lives!

WA, USA: Assisted Suicide Advocates Push Documents for People with Dementia to “Refuse” Spoon-Feeding

advance directives, assisted suicide, Our News & Commentary Blog, spoon-feeding, Washington state, , , ,

Below is an article published on Friday, 11/3/17 by Kaiser Health News. The original article can be found at https://khn.org/news/new-instructions-could-let-dementia-patients-refuse-spoon-feeding/ and is republished here, according to the guidelines of  Kaiser Health News.

A “right to die” organization based in Washington state is pushing a new advanced directive that would allow people with dementia to refuse to be fed by hand – using an advanced directive. The guidelines are allegedly straightforward and suggest it’s easy to tell when someone with dementia has lost all interest in food and liquid. My comments suggest that “refusal” cases have a history of starting out narrowly defined and are broadened over time. By the end of the article, advocates of this new initiative confirm my concerns – stating they would like to prevent any hand-feeding but that “this is where it must begin.”

The article doesn’t get to discuss troublesome questions around this initiative: Is this really a big problem? Is it that easy to tell when a person doesn’t want to eat or drink at all? Is people needing time and care to eat a bigger problem than lack of hunger?

I posted a link to this article on Facebook yesterday and quickly got a comment from one of my friends on the site. They paint what I believe is a “reality check” regarding issues of dementia, feeding, and care. Issues absent in the framework and concerns of the assisted suicide advocates pushing this latest Trojan Horse.  Please read my friend’s comments below and keep them in mind when reading the article that follows them:

Both my parents were diagnosed with Alzheimers as was one sibling of each. Three have now died in the past three years, and mother has little time left. All her rights have been stripped of her, and none of her desires are being respected. She’s currently in a nursing home which she was adamantly against and my life revolves around visiting as much as possible.

I feed her several meals a week and see the time and effort spent on others, which is generally a half-hour and never as much as 45 minutes. From what I see I can safely assume what mother’s feeding is like when I’m not there. I spend sometimes as long as an hour and a half. She now probably weighs less than 80 pounds by the way.

What I’ve noticed is that her appetite is as fickle and fleeting as her moods. She can become very anxious and angry but can be redirected, and it can change dramatically over a short time. Again, staff don’t have the time required so without me, it doesn’t occur. There are times when she doesn’t want food and will be adamant, which is when I quit trying of course. I understand that’s part of her condition. However, if I don’t attempt for several minutes, she may feel very differently soon. My point is that presumptions are made due to time constraints and minimal staffing rather than what the person wants or needs. (End comments)

 

New ‘Instructions’ Could Let Dementia Patients Refuse Spoon-Feeding

JoNel Aleccia, Kaiser Health News

People who abhor the thought of being kept alive with feeding tubes or other types of artificial nutrition and hydration have, for years, had a way out.

They could document their wishes to halt such interventions — and have them honored — using advance directives.

That includes patients diagnosed with progressive dementia who are able to record crucial end-of-life decisions before the disease robs them of their mental capacity.

But the practice has rarely — almost never — included provisions to refuse food and fluids offered by hand. Until now.

A Washington state agency that advocates for medical aid-in-dying has created guidelines for dementia patients who don’t want to be spoon-fed at the end of life.

The group End of Life Washington, or EOLWA, which assists people using the state’s 2009 Death with Dignity Act, recently posted new “Instructions for Oral Feeding and Drinking” on its website.

Aimed at people with Alzheimer’s disease and other progressive dementias, the document provides a two-page template for patients to instruct caregivers not to provide oral food or fluids under certain circumstances. There’s another document explaining the do’s and don’ts of using it.

The instructions are ground-breaking for patients who fear losing control not only of their faculties but of their free will to live and die on their terms, said Sally McLaughlin, executive director of EOLWA.

“We get calls from folks with concerns about dementia and concerns about the fact that loved ones with dementia feel like they’re being force-fed,” McLaughlin said. “Many, many folks understand that as they stop eating, they would like no one else to feed them.”

Critics say the new document raises concerns about potential mistreatment of vulnerable patients, arguing that such “instructions” could be used essentially to starve the elderly or incapacitated.

“It really is troubling,” said Stephen Drake, research analyst for the disability rights group Not Dead Yet.

He points to other so-called right-to-die efforts, such as the refusal of artificial nutrition and hydration, saying they started out narrowly defined and then became common practice.

“It really is a big game changer in the number of people whose lives can be ended when they’re in vulnerable situations,” Drake said. “In legal situations, this is a door-opener.”

Proponents of the guidelines say they fill a gap in information for people already interested in navigating the uncertain landscape that surrounds assisted feeding at the end of life.

“What we are saying is that there are objective and somewhat subjective conditions in the future where you can say ‘I’m giving you instructions now to help you interpret my wishes,’” said Bob Free, a Seattle lawyer who helped draft the document. “We have never really seen a standard form or advance directive to govern this.”

The guidelines do not apply to people with dementia who still get hungry and thirsty and want to eat and drink, the authors note.

“If I accept food and drink (comfort feeding) when they’re offered to me, I want them,” the document states.

But if the person appears indifferent to eating, or shows other signs of not wanting food — turning away, not willingly opening their mouth, spitting food out, coughing or choking — the document says attempts to feed should be stopped.

And the guidelines tell caregivers to respect those actions.

“No matter what my condition appears to be, I do not want to be cajoled, harassed or forced to eat or drink,” the document states. It adds that the “reflexive opening” of the mouth should not be interpreted as consent to eating.

“An analogy is the difference between when a knee is tapped with a hammer and the reflexive response is a knee jerk and when a person voluntarily raises his or her knee,” said Free. “We think this is a fairly objective test, which in real life will be clear.”

The new guidelines won’t be binding — legally or ethically, experts say. Nearly two dozen states have laws that address assisted feeding, including many that prohibit withdrawing oral food and fluids from dying people.

“The hard part about advance directives is even though you put your wishes there, it doesn’t mean a medical professional will honor it — or that a facility will honor it,” said Jonathan Patterson, staff attorney for Compassion and Choices, a group that supports medical aid-in-dying.

The new forms follow two recent high-profile cases in which family members said dementia patients were kept alive with spoon-feeding by caregivers, despite written requests to stop.

Margot Bentley, 85, of British Columbia, died last year. She was a retired nurse who had cared for dementia patients before being diagnosed with Alzheimer’s in 1999. In 1991, she wrote a statement stipulating that she wanted no nourishment or liquids if she developed an incurable illness. However, the nursing home where she was a patient continued to spoon-feed her, despite her family’s protests. A court ruling upheld that action, saying that food is basic care that cannot be withdrawn.

Nora Harris, 64, of Medford, Ore., died on Oct. 11 after an eight-year struggle with early-onset Alzheimer’s disease. More than a year earlier, her husband had gone to court to stop caregivers from spoon-feeding Harris, who had an advance directive that called for no artificial nourishment or hydration. A judge declined, siding with officials who said the state was required to feed vulnerable adults.

Such cases horrify people who fear the same fate. Nancy Christensen, 60, a Seattle nurse, said she updated her living will herself within days of reading about Harris.

“I thought, ‘Wow, I need to be much more specific,’” said Christensen, who appended notes saying she doesn’t want assisted feeding if she can no longer feed herself. “I don’t think anybody thinks about this until they’re too far into it.”

Free, 71, said he plans to fill out the new documents himself.

“It’s been a personal desire of mine to have a dignified death,” he said. “The idea that my sons would have to witness me in a deteriorated state is very frightening and demoralizing.”

Whether VSED, which stands for “voluntarily stopping eating and drinking,” can be authorized in advance by people diagnosed with dementia remains unclear. The question has gained traction in a nation where dementia cases in people 65 and older are projected to reach 7.1 million by 2025. Paul Menzel, a retired bioethicist at Pacific Lutheran University in Tacoma, Wash., said some people want to avoid the most debilitating stages of the disease.

“It’s not misery they’re afraid of,” he said. “They just don’t want years of withering.”

The EOLWA document is a novel tool, but it may not go far enough, said Judith Schwarz, clinical director for End of Life Choices New York, which advocates for medical aid-in-dying. The conditions it lists typically apply to the final stages of dementia, she said. Some patients want the right to refuse food earlier in the disease process in a deliberate effort to hasten death.

Until now, however, there have been few models for articulating those desires.

“It certainly is an improvement over no previous mention of hand-feeding,” Schwarz said. “Maybe this is where it must begin.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and its coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.