Vermont: Testimony of Ira Byock, MD to Vermont Senate Committee on Health and Welfare Hearing on End of Life Choices

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Anyone who has read this blog regularly knows that we hold Ira Byock in high regard.  That’s why we nominated him to the IOM’s Committee on Transforming End-of-Life-care.

Earlier today, Ira Byock gave testimony to the Vermont Senate Committee on Health and Welfare’s Hearing on End of Life Choices (that means it’s a hearing on legislation to legalize assisted suicide).

Below is the written testimony, which is similar to his verbal testimony:

State of Vermont
Senate Committee on Health and Welfare
Hearing on End of Life Choices
January 31, 2013
Testimony of Ira Byock, M.D.

Chairman Ayer, and Members of the Committee. Thank you for allowing me to
come before you this morning.

I am Dr. Ira Byock. I am a practicing palliative care physician and direct the
palliative care program at Dartmouth-Hitchcock Medical Center in Lebanon, NH. I
am a professor in the Department of Medicine at the Geisel School of Medicine
at Dartmouth.

I give testimony today as an individual, not on behalf of any institution or
organization.

I have an active Vermont medical license and although I live and practice in New
Hampshire, as many as 40% of the patients I and our team serves live in The
Green Mountain State.

My clinical experience of over 30 years of practice informs my approach to care
for people through the end of life. Of course, my personal understanding of
society and my political beliefs also influence my testimony today. I am a proud
lifelong social and political progressive. I support universal health care, disability
rights, voting rights, women’s rights, Planned Parenthood, gay marriage,
alternative energy, nuclear disarmament and gun control.

Proponents assert that the death with dignity bill is about an individual’s right to
die. To political progressives, this is an attractive approach. What could be more
personal than a right to control one’s own body?

As a physician I have devoted myself to advocating for the rights and wellbeing
of seriously ill and dying people and their families. If legalizing physician-assisted
suicide represented an authentic extension of personal freedoms, I would be an
ardent advocate. In reality, giving doctors the authority to write lethal
prescriptions represents acquiescence to well-documented social failures and
unmet needs of ill people and their families. While masquerading as progressive
politics – “the right to die” is an effective slogan – legalizing physician-assisted
suicide is regressive social policy.

Lawyers and legislators will recognize that no right to suicide can be found in any
social compact; not in the Magna Charta, the Declaration of Independence or the
U.S. Constitution. The United States was founded on certain unalienable Rights,
“that among these are Life, Liberty and the pursuit of Happiness.”

Consistent with these rights, I believe that there is a right to basic health care,
including palliative and hospice care when someone has a life-threatening
condition and complex needs. Thanks to Governor and this legislature, Vermont
has made important strides toward improving health care for the residents of the
state. I applaud and support your efforts. However, we have a long way to go
toward achieving the goal of honoring this right for all seriously ill Vermonters.

Responding to Suffering

One thing on which good people on both sides of this issue agree is that far too
many people suffer needlessly as they approach the end of life.

If I thought lethal prescriptions were necessary to alleviate suffering I would
support them. In 34 years of practice, I have never abandoned a patient to die in
uncontrolled pain and have never needed to hasten a patient’s death. Alleviating
suffering is different from eliminating the sufferer. Allowing a person to die gently
is importantly different from actively ending the person’s life.

The real question for this Committee – and by extension for all us – is how can
we take the best care possible of seriously ill Vermonters and the families who
love and care for them?

The Role of Doctors and Health Care Professionals

The health care system and health professionals in general, and doctors in
particular, have important roles to play.

The ancient professions developed as repositories of specialized expertise and
services to members of society. From antiquity, the medical profession was
developed to protect, save or sustain life, and to enhance quality of life, including
alleviating suffering.

Today, America’s health care system is really a disease treatment system. We
have more power to diagnose and treat disease and to save and extend life than
ever before in human history. Until the latter part of the 20th Century, people with
conditions such as kidney failure or heart failure died abruptly but today they may
live for many years – for most of the time quite well. Throughout history, cancer
was a brief illness. We are now able to cure nearly 60% of cancers and many
cancers we cannot also become conditions that people can live with, often for
many months if not years.

For all the progress and power of medicine, we have yet to make even one
person immortal. Instead we have invented chronic illness and we have
inadvertently made dying much harder than it used to be – or needs to be.
I’m proud of being a doctor, but it is undeniable that our health care system,
including many of my fellow doctors, are not caring well for dying people.
It is not because doctors are callous or insensitive to people’s suffering. As a
medical educator, I can say that despite modest improvements in medical school
curriculum, in our zeal to fight disease, we are neglecting to train doctors to care
well for the people living with disease. Stated differently: We are still setting new
doctors up to fail, not just themselves, but also their patients and, collectively, the
very society that trains and pays them. Hospice and palliative medicine are given
short shrift in medical training. Only small amounts of curricular time are devoted
to symptom management, communication, and the ethics of decision-making.
Little if any time is invested in teaching young doctors how to counsel patients
and families who are living with life-limiting illness. Less time still is spent building
skills of working in teams with hospice and palliative care clinicians or of
coordinating care for patients. We teach minutia of biochemical pathways, but not
eligibility criteria for accessing vital services such as home health and hospice,

Persistent Health Care Deficiencies

Vermont is rightly proud of the health care that it provides to residents. But as
this Committee knows, serious challenges remain.

Few of Vermont’s hospitals have palliative care services, including most of the
critical access hospitals that serve small communities in this state. And in those
hospitals where palliative care does exist, it is typically a threadbare service that
leaves many patients and families with unmet palliative needs.

Hospice penetration among Medicare enrollees in Vermont has improved slightly
in recent years, but lags far below the national average. Nationally, in 2010, 63%
of Medicare beneficiaries who died had hospice care, but in Vermont only 36% of
Medicare patients received hospice care before they died.

When the Medicare Hospice Benefit was established by Congress in the early
1980s, it was intended to be available for the last 6 months of people’s lives. But
median length of hospice service nationally is just 19 days before death, despite
perennial efforts to educate doctors and the public to access hospice earlier.

Under regulatory scrutiny from Medicare, patients who are admitted to hospice
have to continue to decline or they risk being discharged from hospice care. Of
course, although hospice care rarely cures anyone, it often makes people’s
conditions better. Indeed, in 2010, over 10% of hospice patients in Vermont were
discharged from hospice because they were not dying quickly enough.
Vermont’s hospice programs are also challenged by their small sizes and
geography, including our rural roads, northern weather and long distances
between patients. Hospices in rural communities often have difficulty
incorporating the rapid advances in the field of hospice and palliative care. As a
practicing physician, I often encounter hospice programs in our region which
cannot accept patients whose treatment plans include medically administered
nutritional support, injectable medications for pain or other symptoms, or IV fluids
for comfort, or wound care with vacuum dressings.

The medical directors of many hospice programs in the state typically work for
hospice only a few hours a week – it is a community service rather than a
vocation for most. Few hospice medical directors are specialists in the way we
think of specialists in cardiology, oncology, or critical care. When a hospice
medical director is out of town or otherwise unavailable, medical supervision for
hospice patients and afterhours calls typically reverts to each patient’s own
primary physician or that physician’s associates. But those physicians may have
no interest or expertise in this realm of practice. So specialty level care for pain
or other symptoms, counseling and family support becomes unavailable.

In addition to the discomforts and exhaustion of illness, seriously ill people often
suffer from a sense of being a burden to those they love. That is one of the main
reasons that people in Oregon request lethal prescriptions under that state’s
Death With Dignity Act.

In America today – including in Vermont – we inadvertently make that burden
heavier than it needs to be. In the fight against disease, cost is no concern, but
our system pauperizes of people for being seriously ill and not dying quickly
enough. Inadequate staffing in assisted living and long-term care makes frail
elders feel undignified, often because there is simply no one to answer the bell
when someone’s grandmother or grandfather needs help in getting to the
bathroom.

Dying will always be hard, but it doesn’t have to be this hard.

Reasons for Limiting a Doctor’s Role

There are limits to a doctor’s role. From earliest beginnings of the profession of
medicine, society gave physicians special authority and privileges – to touch
people in intimate ways and talk about highly personal matters that would
otherwise be inappropriate. Correspondingly, society imposed clear limitations
on a doctor’s role. Chief among them was the principle that doctors must not kill
patients.

This prohibition extends beyond assisting in suicide or performing euthanasia.
Doctors are disallowed by the profession from participating in capital punishment,
even in jurisdictions in which it is legal and court ordered. Similarly, doctors must
not participate in torture or “forcible interrogation”, even when police or military
authorities order us to do so. These proscriptions were not put in place to protect
the sensibilities of practitioners, but to protect the public and vulnerable people
from misuse of medical power.

Those in favor of legalizing physician-assisted suicide point out that many people
want to be comfortable AND alert and interactive to the very end. It’s true that
while I can assure people of being reasonably comfortable as they take their last
breaths, the “cost” of comfort may well require them to be sleepy.

Proponents suggest that having to be sedated and having to be turned and
cleaned by others is an assault to a person’s dignity. But this notion of dignity
seems self-fulfilling, setting the bar for dignity so high that few people at the far
end of life will qualify.

People who are seriously ill should not have to die with their boots or their
makeup on to feel dignified. They already ARE dignified. This is a settled matter
of social ethics. In 1948 United Nations Universal Declaration of Human Rights
begins with the stipulation:

“Whereas recognition of the inherent dignity and of the equal and
inalienable rights of all members of the human family is the foundation of
freedom, justice and peace in the world.”

If dignity is an inherent feature of human life, our collective responsibility is to
care for one another in ways that allow people who are aged, ill or otherwise frail
to see their inherent dignity reflected in our eyes. Each of us, as members of
society, should expect that degree of sensitivity from the doctors, nurses and
others who are caring for our loved ones – our mothers, fathers, grandparents,
spouses, siblings, children and friends.

The Power of Words

It is not my place to judge the suicide of any individual. Suicide may be a
personal and private act. But physician-assisted suicide involves two people, one
of whom was trained and licensed by society and is compensated by society.
The legalization of physician-assisted suicide is social policy.

Recognizing the serious deficiencies of care and family support that continue to
plague incurably ill people and their families, the drift toward embracing
physician-assisted suicide feels Orwellian. George Orwell understood the power
of language to reshape moral thought.

Today we know that branding matters. That is why the Hemlock Society morphed
into Compassion and Choices, which promotes “death with dignity” and objects
to the word “suicide,” preferring “aid-in-dying” or “self-deliverance” or
“hastenings.” These terms sound benign, but the undisguised act they describe
remains a morally primitive, socially regressive, response to basic human needs.

Proponents of adopting an Oregon-style act in Vermont emphasize safeguards in
the law and assert that Oregon’s experience proves that worries about a slippery
slope are unfounded. However, a recent PBS Frontline documentary, The
Suicide Plan, shows unambiguously that the leaders of Compassion and Choices
and the Final Exit Network truly believe that the right to self-deliverance must not
be abridged, nor should it be dependent on physical ailments or the willingness
of a prescribing doctor. (www.pbs.org/wgbh/pages/frontline/suicide-plan/) The
filmmakers did not take sides, adopting an unblinking approach to the topic. I
encourage any legislator who feels drawn to vote for legalizing physician assisted
suicide to see this documentary.

Suspicion of Hospice and Palliative Care

Although the hearings this week respond to citizens who support legalizing
physician-assisted suicide, there is a significant portion of the public who worry
that they or their relatives’ or friends’ lives might be prematurely shortened by
doctors. I am not aware of any formal surveys or studies, but both as a doctor
and as someone who talks with the lay audiences about these issues on a
regular basis, I would estimate that 25% or more of the public would have
difficulty distinguishing between hastening death and hospice and palliative care.

Some people worry that palliative care is a euphemism for euthanasia. In my
experience such fears are more common among people with long-standing
disabilities, people of color, and self-identified social conservatives. In a single
day at the hospital recently, I encountered two separate families who were
hesitant to allow me to consult on their loved one’s care. In each case, they
wanted to know how palliative care was different from Jack Kevorkian or
euthanasia.

The inflammatory characterizations of advance care planning discussions with
one’s doctor as “death panels” and accusations of “killing granny” were entirely
unfounded, and yet have left a lasting impression. Although the large majority of
social conservatives applaud and support hospice and palliative care programs
and professionals, a vitriolic fringe accuses our field, along with medical ethicists,
of promoting a “culture of death” and representing “stealth euthanasia.” I would
simply ignore such nonsense, were it not for the tangible consequences it has in
sewing suspicion and limiting my and my colleagues ability to serve people who
need our help.

Hospice and palliative care professionals feel responsible for serving all of the
population of our region. Many people will not allow us to care for their mother or
father if they think we might surreptitiously end their loved one’s life. Therefore, it
is essential to reaffirm the distinction between hastening death and allowing
people to die gently with medical competence, social support, tenderness and
love.

A Progressive Agenda to Improve Care and Quality of Life

An authentically progressive agenda for improving the way we die would include
the state of Vermont making use of the Medicare waiver mechanism within the
state’s health plan to dissolve the arbitrary requirement that incurably ill people
give up treatment for their disease to receive hospice care for their comfort and
quality of life and support for their families.

The Vermont legislature could preserve the dignity of frail elders and physically ill
and dependent people by ensuring that there sufficient staff in long-term care
facilities to answer the bell when Vermont’s mothers or fathers, grandmothers or
grandfathers, need help in getting to the bathroom. Nothing assaults an ill or
demented person’s dignity more than being unable to get help when needed.

It is past time for every state legislature to insist that every medical student
receives adequate training and passes competency tests in basic palliative care
knowledge and in the skills required for effective symptom management,
communication, shared decision-making, and counseling related to serious
illness and dying – skills that too many physicians lack today.

Summary and Conclusion

Despite all the collective efforts of Vermont’s health care community and
government, including this body – and the significant incremental progress being
made – we are failing people who are facing the end of life and those who love
and care for them.

The bills being considered would not address the root causes of suffering.
Nothing in an Oregon-style Death With Dignity Act would change serious
curriculum deficiencies or ameliorate the impact they have on the public health. It
would simply give licensed physicians in this state authority to write lethal
prescriptions – nothing more.

Nothing in the legislation would protect a terminally ill Vermonters who legally
obtains a lethal prescription from being denied hospice care because he wants to
continue disease treatments, nor from being subsequently discharged from
hospice care if his condition slightly improves. The message from state and
federal government will be clear: We may not be able to afford hospice care for
you, but your legal right to “self-deliverance” remains available.

The day after the new law took effect, hospice length of service would still be
shrinking, hospice would still have limited ability to serve people undergoing
active treatments. Staffing in long-term care would still be woefully inadequate.
And we would still be graduating and licensing new physicians who have been
inadequately trained and are demonstrably unprepared to care well for dying
patients.

Rather than representing an extension of our rights, granting physicians the
authority to write lethal prescriptions feels like capitulation to our failures. We are
better than that. Physician-assisted suicide is not a right; it is a wrong.

Press Release: Disability Group Urges Institute of Medicine (IOM) to Remedy “Glaring Omission” in Membership on End-of-Life Committee

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Disability Group Urges IOM to Remedy “Glaring Omission” in Membership on End-of-Life Committee

On Tuesday, January 29, 2013, Not Dead Yet submitted recommendations that two new members be appointed to the Institute of Medicine’s recently formed Committee on Transforming End-of-Life Care to remedy what it called “glaring omissions.” The group recommended Kelly Buckland, Executive Director of the National Council on Independent Living, and Dr. Ira Byock, Director of Palliative Medicine at Dartmouth Hitchcock Medical Center.

Rochester, NY (PRWEB) January 30, 2013

On Tuesday, January 29, 2013, Not Dead Yet submitted recommendations that two new members be appointed to the Institute of Medicine’s recently formed Committee on Transforming End-of-Life Care to remedy what it called “glaring omissions”. The group recommended Kelly Buckland, Executive Director of the National Council on Independent Living, and Dr. Ira Byock, Director of Palliative Medicine at Dartmouth Hitchcock Medical Center.

“We recognize that the existing appointments may be considered to be sufficient,” said Diane Coleman, President and CEO of Not Dead Yet, “but we hope that the appointing authority will not only find the proposed candidates eminently qualified, but recognize that it would be a glaring omission to leave them out of the Committee.”

The IOM first examined the issue in its 1997 report Approaching Death: Improving Care at the End of Life. An online description of the project describes its mission and rationale as follows:

“While the 1997 IOM Report made important and wide sweeping recommendations, progress in implementing them has been slow. . . .Given the importance of death and dying to our citizens and our nation, the IOM plans to examine the current state of end-of-life care with respect to delivery of medical care and social support; patient-family-provider communication of values and preferences; advance care planning; health care cost, financing and reimbursement; and education of health professionals, patients and their loved ones. The study will also explore approaches to advance the issues surrounding the end of life from a wide variety of perspectives including clinical care and delivery, resources and workforce, economics, spirituality and compassion.”

Public comment on the list of provisional appointments to the Committee was requested in the form of online submission.

“Our highest priority is the addition of a qualified disability expert to the Committee,” Coleman added. In submitting its recommendation of Kelly Buckland, Executive Director of the National Council on Independent Living, Not Dead Yet provided the following explanation:

“While the relevance of [disability] may not be immediately obvious, the factors impacting people with life threatening health conditions very often derive from the presence of disabilities that accompany a terminal illness. While people may not immediately think ‘disability’ when they think of terminal illnesses, functional losses and the need for assistance in the activities of daily living are central issues in advanced terminal illness, and that means disability is a central issue. Disability experts in the field of independent living are people with disabilities who have first hand experience in how to maximize functional activities despite impairments, how to use adaptive devices and technology, how to maintain a sense of personal control and how to achieve the best possible ‘quality of life’.”

The group also recommended Dr. Ira Byock, M.D., a palliative care physician and long-time public advocate for improving care through the end of life. His books on the subject of improving end of life care include Dying Well(1997), The Four Things That Matter Most (2004) and The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life (2012).

“Dr. Byock demonstrates a deep respect for the individual, and his methods reflect the best values in person centered care,” said Stephen Drake, Not Dead Yet’s research analyst. “If I were terminally ill, I would want him as my doctor.”

Please go to original PRWeb press release for pdf version as well as .docx version of recommendation letter from NDY to IOM.

 

NewsBiscuit: “Homeopath to start offering ‘assisted-suicide’ remedy” (UK)

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It was bound to happen.  At least one New Age practitioner has decided to cash in jump into the arena of assisted suicide.

From NewsBiscuit – The News Before It Happens…

Homeopath to start offering ‘assisted-suicide’ remedy

A homeopath in Banbury has decided to take politics into her own hands and start offering an assisted-suicide treatment. The service will be offered to those with terminal illnesses where traditional homeopathic treatments have not worked. The number of eligible people is thought to be high.

The practitioner, who goes by the name Chi Wind-Chime, explained that the ‘remedy’ used has been through the emotional turmoil of death, which is then remembered, and injected into the patient. ‘We take our special ‘faucet hydrogen dioxide’ formula to a funeral, where it is surrounded by mourning people. This emotional experience of someone passing is remembered by the special solution. We take this back to my ‘living room laboratory’ where it is diluted with more of the original solution to create a remedy that is so weak its strength is lethal.’

‘When the time comes, a family member can inject the patient, then wait for the treatment to work,’ Ms Wind-Chime continued. ‘The ‘passing room’ is painted lilac and we play whale song to create an atmosphere that is relaxed and peaceful, which is just as well because the effects of treatments on the terminally ill can take up to two years.’

Brenda Roberts took her mother to the homeopath to assist her in ending her life, but was not happy with the results. ‘She had got to a point where her quality of life was not what we wanted, so we convinced her that life was not worth living. So for her 50th birthday we all chipped in and paid for her trip to Ms Wind-Chime and she went through the treatment. That was 4 years ago and we are still waiting for her to keel over.’

Please read the rest of the “news” story here – and remember that it’s satire.

Australia – Great Essay: Looking at the Bigger Picture Regarding Euthanasia

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There’s been a lot written over the past week in response to the news of the double euthanasia of Marc and Eddy Verbessem, the 45-year-old twins who were deaf and losing their vision.

So far, my favorite is from Craig Wallace, President of People with Disability Australia (PWDA).  On January 21st, Ramp-Up, ABC Australia‘s site dedicated to disability issues, published an opinion essay by Wallace titled “Euthanasia: let’s look at the bigger picture.”

Wallace examines the treatment of the Verbessem twins’ deaths and other suicides – something I and others have done in the past.  To be honest, I don’t think I’ve ever done it quite as well as Wallace does in his essay:

It is significant that the focus of articles about euthanasia and end of life planning like this one in The Australian hastily drift into how much it costs the community to keep people with intensive support needs going. How quickly compassion dies and the calculators come out.

In the current world of rationed care and economic rationalism, it is not hard to imagine a situation where the availability of euthanasia becomes seen as a cheaper, easier, ‘rational’ option to providing intensive support, community living and care for those most vulnerable. Instead of having the support to make well-considered choices, the services that make life bearable could fall away and people with disabilities could be levered into taking their lives as the default option.

Euthanasia can become a euphemism which sanitises what is, essentially, suicide. It is hard to see what separated euthanasia from suicide for Mark and Eddy, except they had a disability.

Suicide is not a lifestyle option. It’s the end of any choice, good or bad. It’s choice denying. Also, suicide is handled in a very careful way by the media – it is often unreported to discourage copycat deaths and published articles usually carry warnings.

Suicide is something society discourages for every group of people. Except when they are talking about people with disabilities. No suggestions to call Lifeline or get help in articles like this one – instead we are told “they were very happy” and “it was a relief”. The doctor who helped the twins take their lives reportedly described their end as a “gift”.

What does it say about the perceived value of people with disabilities when our deaths are described in clinical terms and counted as a blessing?

People take their lives for all sorts of reasons – they might be bankrupt, old, ill, lonely, overworked, trapped in poverty, abused, addicted, confused about their sexuality, at the sharp edge of family breakdown, in shame or at the end of a long set of bad life experiences.

If suicide is a gift for one group of people who feel their lives have become unbearable, then why not for everyone who feels like this? Imagine the reaction if someone wrote about the tragic, senseless death of UK nurse Jacintha Saldanha and described it as a “relief”.

For those with a short memory – I confess to being one of them – here’s a reminder via wikipedia, about the death of Jacintha Saldanha:

Jacintha Saldanha was a nurse who worked at King Edward VII’s Hospital Sister Agnes, London. She was found dead by apparent suicide, three days after receiving a hoax call. The prank call was part of the Australian radio programme Hot30 Countdown, broadcast on the Austereo-owned station 2Day FM. In it, the hosts impersonated Queen Elizabeth and Prince Charles enquiring about the health of the Duchess of Cambridge, who was, at the time, a patient staying at the hospital. Saldhana fell for the hoax and transferred the call to the nurse looking after the Duchess. A hospital spokesperson said that she was the “victim of a cruel journalistic trick”.

Please go read the entire essay.  Craig Wallace has put together a concise statement of some of the uglier realities hiding behind the “sympathy” directed at disabled people who want to kill themselves (or want to be killed) and to contrast the reactions of the media and the public to stories like the Belgian double euthanasia to other stories about suicide.

Please go visit the article and read it here.  And consider leaving a comment.  I plan to after I finish posting this.

 

Assisted Suicide and Euthanasia Discussed and Debated on Huffington Post Live

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Last Thursday, January 16th, “Huffington Post Live” featured a 30 minute discussion of assisted suicide, euthanasia, and the right to die – specifically how these issues play out in the USA.

The program was hosted by Josh Zepps, an Australian with who has a  self-admitted libertarian bent (a great definition of libertarians someone shared with me was “holding the firm belief in the absolute right of both rich and poor alike to sleep under bridges).

Pat LaMarche appeared on the “pro” side – she wrote a blog last April about a man with ALS whose last wish was that he could legally get direct assistance – euthanasia – instead of having to self-administer a lethal dose on his own.

Fran Schindler – a “regional care coordinator” for the Final Exit Network (FEN) also appeared for the “pro” side.

Tim Rosales appeared as a spokesperson for the Californians Against Assisted Suicide.

John Kelly, Director of “Second Thoughts,” also appeared on the “anti” side, presenting the perspective of disability activists opposed to assisted suicide and euthanasia.

Points/claims made by Pat LaMarche:

  • People with ALS die by “choking” to death  if they don’t find a way to die earlier in the process;
  • Assisted suicide isn’t enough, people are “forced” to take their own lives earlier than they’d like and would live longer if someone could do it for them;
  • Used the words “horrible” and “agony” to describe deaths that people are “forced” to have (some form of “agony” was used 5 times by her).
  • Made the statement “I honor the disabled person and I honor that they may want to go on… (yeah – I’m pretty sure I heard that stress on the “may.”) Feel free to groan – I did.

Fran Schindler – seemed to be on a short leash.  Most of what she said came directly from a written document, obviously meant to make sure she didn’t use her own words.  When she did stray off script, I could appreciate the cause for concern on the part of FEN – she referred to John Kelly as “the gentleman in the wheelchair” and then went on a rant about Lawrence Egbert and exit bags in response to something John Kelly said – probably very hard for viewers to make sense of.

Tim Rosales – Tim listed the types of organizations and groups opposed to assisted suicide and also started to critique the “safeguards” in legislation.  He also gave a detailed account of the many pressures – financial, family, societal – that can come to bear in a health care system like ours, negating real “choice” – which seemed to reach the host in a way that John Kelly’s mention of the same points didn’t.  Tim also corrected the host in labeling minority opposition to social conservatism, saying they also distrust the government in the current atmosphere.  (Actually, like people with disabilities, many minority members distrust the medical profession itself due to mistreatment or discrimination in trying to get health care.)

John Kelly – Said that pain isn’t a common reason give for wanting to commit suicide – “being a burden” come much higher on the list.  Also, John made the case that legalization – contrary to “libertarian” assertions – increases state involvement by creating a state program to sanction suicide, which sounds OK in some “fairy tale world,” but not in the one he lives in which involves discrimination and pressures toward feeling a burden and a distrust of professionals shared by many people with disabilities.

Just for those who like to do some fact-checking, here are a couple of helpful links:

This link is to a pdf version of the 2012 Oregon “Death With Dignity” report, which includes a summary of data collected from 1998-2011 as well as data (such as they are) for the current year.  You’ll find that a low percentage giving “pain” as a reason for wanting lethal medication is low – almost certainly lower than the actual percentage since “fear of inadequate pain treatment” is lumped together with “inadequate pain treatment.”

The article “Reasons for Living with ALS” is from the ALS  Society.  Here is an excerpt dealing with LaMarche’s false claim that death in ALS comes by “choking to death.”:

Choking
I can remember how frightened my daughters and I were that Tom would die choking, like a drowning man, and we would have to stand by helplessly,” recounts Pat Snyder, R.N. who lost her husband to ALS in 1997. “Our doctor told me that this would not happen and Tom would die peacefully – and he did. His breathing became slower and shallower and he went to sleep. In several hours he died peacefully. He was able to spend his entire illness at home with his family and we were comforted that he did not suffer.”

Some people with ALS fear they will die choking and gasping for air. This fear can create panic for both patients and their families. The reality is that most people with ALS die very peacefully and for those who do have trouble breathing or experience choking, there are things that can be done to reduce or eliminate these problems. Having the patient and family prepared to create an atmosphere of comfort and dignity at the time of death can assure a death without pain or anxiety. By discussing concerns in advance with their physician and nurse, patients and caregivers can be prepared with medications, nasal ventilation, oxygen and suction in the unlikely event that these interventions are needed to assure the patient is comfortable as death draws closer.

While the re-use of “exit bags” by FEN’s ex-medical director Larry Egbert came up, it’s also important to know that the recent PBS documentary (linked on the Huffpo Live page) shows a previously unknown videotape of FEN’s Ted Goodwin explaining how he holds people’s hands down to keep them from “inadvertently” tearing the exit bag off – the person he explained it to was an undercover Georgia Bureau of Investigation agent.  Check out this NDY post for a discussion and a link to the specific segment with Goodwin’s videotape.

Finally, please check out the embedded video below to watch the archived discussion from Huffington Post Live: