Last Day to Submit Input to IOM Committee on Approaching Death – Personal Story

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Today, November 1st, is the last day to provide input to the Institute of Medicine’s Committee on Approaching Death via their online survey, the subject of a previous blog. 

Yesterday I took the opportunity to submit the following personal story involving some disturbing communications from medical professionals a couple years ago when I had some acute respiratory problems.

Question 1:  If you are an individual living with a serious progressive illness or condition, or a loved one of an individual please describe your experiences receiving care. Your stories may include how you have talked with health care providers, your family, and friends; how you have discussed and reviewed your spiritual or religious needs, your finances, or any other issues. Your stories may also include what you liked and did not like about communication with your providers and others who gave you support, treatment approaches, or any other aspects of care.

I have a serious, progressive neuromuscular disability.  For most of my life, doctors thought I had spinal muscular atrophy, but now there’s a DNA test for that and last year we learned that I don’t have the SMA gene.  So now I have a generic neuromuscular disability labeled congenital myopathy.

I have friends with similar conditions, as well as friends with post-polio syndrome, many of whom use BiPAP machines at night to breathe.  No doctor in my first 45+ years ever mentioned that I might one day need a BiPAP but, fortunately, my friends and I talked about these issues and I learned from them what to look for in terms of potential symptoms.  When I noted a symptom and requested a sleep study, it revealed that I needed breathing support during REM sleep.  I got my first BiPAP about twelve years ago.

I could never understand why I had to be the one to bring it up.  Over the years, I lost three friends to acute respiratory failure who did not have the benefit of my friend’s knowledge and support.  In two cases, their doctors gave them oxygen without mechanical breathing support, which is the wrong answer for people like us.

My current doctors include some with the relevant expertise in neuromuscular disabilities.  I don’t think that the importance of specialty knowledge related to specific disabilities can be over-estimated.  But the other quality that my current doctors have is a willingness to listen to me, talk with me, and engage in dialogue that takes my experience with managing my disability into account.

About two and a half years ago, I caught what I thought was a cold that turned out to be viral pneumonia.  I started going into respiratory failure and my husband called 911.  When the EMTs arrived, I was sitting in my wheelchair and using my BiPAP, but it was not enough to keep my oxygen level up.  I later learned that, as the EMTs were taking me to the ambulance, out of my hearing, they asked my husband if I had a DNR.  Something about they way they asked the question led him to not only say “no” but also to explain to them that I have a full time job.  He felt that this changed their tone.

I was in the hospital for a week, but about a month later, had severe chest congestion that resulted in another 911 call.  I received oxygen with my BiPAP while I coughed through the congestion and, several hours later, I was fine again.  But when my chest x-ray was being discussed, one doctor questioned whether I would want to treat something that might be life threatening.  He looked at me in my wheelchair with what I’m sure he viewed as sympathy for my condition and a genuine concern to be sure that he knew what I wanted.  But I also felt sure that he wouldn’t have spoken that way to a non-disabled woman at age 58.  I said, “I have a full time job,” and he essentially backed off, stopped talking and left.

That was when my husband told me about the EMT experience a month earlier.  We both remarked that we had felt threatened by the medical professional’s tone and both brought up my job as a response.  We also both felt regret about mentioning the job, as though whether someone has a job should determine how they are treated by medical professionals.  Our professional careers include a fight against such oppressive attitudes.  Yet we both felt that mentioning that I work full time changed the dynamic of the communication.

Shortly after these two experiences, I learned about and got a cough assist device and since then I have been able to manage respiratory congestion without resorting to emergency treatment.

But these experiences were a brush with the perhaps subtle forms of devaluation that medical professionals sometimes visit upon people with chronic, serious disabilities.

More blatant forms of discrimination are also common.  . . .

***

I then referred the Committee to Not Dead Yet’s public comments on the nondiscrimination regulations under the Affordable Care Act, and pointed to the Disability Rights Education and Defense Fund (DREDF) comments and other health care resources.  Assisted suicide advocates have also promoted their political agenda to the Committee, so I finished by pointing them to the disability rights opposition to legalization of assisted suicide articulated on the NDY and DREDF websites.

We all know that medical professionals get far too little education about disability in their training curricula.  Please tell your story by going to the online survey.  It’s guaranteed to add to their knowledge of disability, and they need that far more than they realize. – Diane Coleman

 

Not Dead Yet UK: “Real Disability Activists and Masquerades” by Dr. Kevin Fitzpatrick OBE

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(Editor’s Note – you can read this article at the Not Dead Yet UK site – that version includes a couple of links absent here.  Click title to go to original article.  Please read to the end – I’ve added a couple of links of my own on similar issues we’ve dealt with in the U.S.)

Real disability activists and masquerades – by Dr. Kevin Fitzpatrick OBE

 

Have you heard of the new Disabled Activists for Dignity in Dying? And the interesting claim that 75% of disabled people support assisted suicide/euthanasia? Is that really true?

 

And why should DiD feel there is even any need for a ‘disability voice’ FOR euthanasia? There is no special pleading necessary for disabled people under their proposed law. Or are they arguing for disability rights for euthanasia? That makes no sense.

 

DiD have always claimed their campaign is not to change the law for disabled people, but for those with only a few weeks or months to live.

 

Therefore, is DiD really a lobby for assisted suicide for all disabled people and sick people, rather than people who are very sick and soon to die?

 

Who are these activists?

 

It is true they are all disabled people. However they are individuals with a point of view, not representatives of any Disabled People’s Organisation. For example, this new arm of the rather aggressive lobby DiD, is led by wheelchair user Greg Judge, who is listed as a member of staff and is therefore paid by DiD to represent that organisation’s core mission and values.

 

NDY UK, on the other hand, is a network of disabled people working largely pro bono and who have been mandated to represent the views of many disabled people. There is a difference.

 

And still, too date, the majority of disabled people I know are either entirely against or have huge reservations about such a law.

 

The others involved in DiD are Lucy Aliband who impairments resulted from a traumatic road accident; she joined this year after her experience of her mum’s death and like Sally O’Connor, who was diagnosed with the progressive condition MS, is naturally dealing with constant personal changes which will inform her view. The last is Melanie Reid, a journalist who became quadriplegic two years ago and who thinks it makes no economic sense to ‘keep people alive’. You can read her other opinions in the Times (March 27, 2012) where she indulges herself, in name-calling and rant. No evidence, no counter-argument. Melanie Reid refused to engage with me in any kind of honest debate.

 

This is the basic line up of Disabled Activists for Dignity in Dying. Is it really representative? Just calling them ‘activists’ does not make it so.

 

Baronesses Campbell and Grey-Thompson, others involved with Not Dead Yet UK, have a long and collective history of representing large numbers of disabled people’s rights through democratic structures and processes.

 

In the world of legitimate disability activism one thing is clear: we are required to seek the views of large numbers of disabled people in order to speak on their behalf – it is called democracy! That’s what we do.

 

Therefore I question the legitimacy of this new group of disability activists because of the self-appointed members who are also the spokespeople.

 

And where has this crazy figure of ‘75% of disabled people want their right to die’ come from? So far as I can make out, DiD source it in the British Social Attitudes Survey 2007.

 

Now why the BSA 2007 and not say the latest available survey of 2012? The BSA’s own search tool reveals the following results for keywords/phrases: ‘assisted suicide’ 0; euthanasia 0; dignity 0; dying 1 (but that last appears in the report about relationships and nothing to do with assisted suicide).

 

So if there was any truth in the 2007 survey they are promulgating, have disabled people actually changed their minds away from assisted suicide/euthanasia despite DiD’s best efforts in the intervening period?

 

BSA conducted 3,248 interviews, and asked 4 questions in the disability ‘section’ of the 2012 survey none of which related to assisted suicide/euthanasia but were about prejudice and whether disabled people can live full lives. The number interviewed was around 2,100 for each of these four.

 

Think on that – it appears that 3,248 people were interviewed in 2012 – and in 2007 the ‘Number of units: 4,124 cases’ (whether that means actual individuals I don’t know), carried out ‘by computer assisted personal interviewing’ in which ‘some questions are asked regularly, others less often’. The earlier report cites categories like ‘care of the disabled’ – no activism (nothing about us without us) here then.

 

So 0.003% of the population answered unrelated questions in 2013. Therefore I challenge DiD to explain how they have come up with this figure on 75%. I believe this to be propaganda unless and until proven otherwise.

 

Now I have raised this question before but I think it bears repeating: what is DiD’s real motive?

 

By Lord Falconer’s own admission any law would affect about 1,000 people a year. I would bet a great deal that a number of those would have serious second thoughts if offered the very best in palliative and social care.

 

Any law must, by its nature, be general covering everybody which is why it makes no sense to make a special case for disabled people. The law will be there for not just the fewer than one thousand, but each and every one out of the six hundred thousand who die in the UK every year. So where are the voices of the majority who do not wish to commit suicide? Again, where is the democracy?

 

I have engaged in many debates against many people, especially on moral questions like this: usually, I can see the integrity of my opposition. I may not agree with them, but I can see how they might have arrived at their position honestly. I can respect them in some ways (depending on the extremity of their moral position).

 

But how can I or anyone respect an organisation hell-bent on introducing laws that are by their own estimation for a tiny number of people, but who know very well (evidence from Holland, Belgium and Oregon), who know full-well that any such law will mean that innocent people die, and first among equal candidates are disabled people. How can I respect those who use sheer propaganda to bully people into believing them?

 

What is their real purpose?

(Editor’s note:  We’ve had similar issues here in the U.S. with assisted suicide proponents saying, on the one hand, that disability has nothing to with assisted suicide, but finding disabled people to put forward to attempt to counter our message.  You can read a description of “Autonomy, Inc” here (note – the leader of the group – Paul Spiers – passed away a short time ago.)  In 2011, Compassion and Choices (C&C) published a newsletter claiming that “Key Disability Rights Leaders” support assisted suicide. The only “disability organization” to support assisted suicide is Autonomy, Inc., which was formed as a chapter of Compassion in Dying.  We have a response flyer to C & C’s “key disability rights leaders.”  You can view a version of the flyer – without pictures – at this link.  The complete version is located here, but it downloads directly to your computer when you click on it.  We’re trying to fix that.)

 

 

RELEASE: Canadian Association for Community Living Relieved at Dismissal of Appeal in Rasouli Case

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The Supreme Court of Canada has dismissed an appeal that would have permitted 
doctors to end life support for a severely brain-damaged man without the consent 
of his family or a substitute decision maker.

Under the Health Care Consent Act, doctors who want to withdraw life support 
from an incapacitated person without the consent of their authorized health care 
decision-maker must take the issue up before the Consent and Capacity Board.  
The burden is on the doctors to push their case for withdrawing care, rather 
than on the individual’s family to block the doctor.  The Board’s decision can 
be appealed to the courts.

Canadian Association for Community Living Relieved at Dismissal of Appeal in Rasouli Case

For Immediate Release

October 18, 2013

Toronto

The Canadian Association for Community Living (CACL) is relieved that the Supreme Court of Canada (SCC) has dismissed the appeal in the case of Cuthbertson v. Rasouli where Mr. Rasouli’s attending physicians sought to override the wishes of his family and withdraw life support measures.  In a majority judgment, the Supreme Court clearly affirmed that life support is medical “treatment” within the definition of the Ontario Health Care Consent Act (HCCA).  Thus disputes over whether or not it should be withdrawn are disputes about consent to health care treatment or about acting in the best interests of the patient in respect of health care decisions. The regime in Ontario provides a process for resolving such disputes through the Consent and Capacity Board, and the SCC judgment asserts that is the place to resolve them.

Had the SCC ruled otherwise, it may have opened the door to physicians acting unilaterally to withdraw life sustaining treatments, unless their patients or their substitute decision makers or supporters could get to court to request an injunction.  Such requirements would impose significant barriers to justice for older persons and persons with disabilities who, as the SCC has already acknowledged, face historic and systemic disadvantage.

CACL has been involved in a number of cases where medical professionals have attempted to override the wishes of individuals and their families with regard to continuation of life-sustaining treatments, often for infants born with complex health care needs. These cases demonstrate the perilous position that people with disabilities can find themselves in when they enter the health care system. These have taken many forms—from inappropriate use of “Do not resuscitate” orders, to pressure from physicians to terminate treatment.

Today’s decision is welcomed by CACL in preventing potentially disastrous implications of granting blanket decision making authority to physicians.  Only providing recourse to apply for court injunctions is not the way to resolve decision-making challenges.  In making clear that legislated procedures under the HCCA govern decision making, the Court has ruled against further barriers to justice and equality for people with disabilities and older persons.

– See more at: http://www.cacl.ca/news-stories/blog/canadian-association-community-living-relieved-dismissal-appeal-rasouli-case#sthash.eVYBsWR6.dpuf

Autistic Self Advocacy Network: “ASAN Condemns Media Coverage of the Attempted Murder of Issy Stapleton” (Release)

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ASAN Condemns Media Coverage of the Attempted Murder of Issy Stapleton

The Autistic Self Advocacy Network issued a statement on Monday, October 14th, expressing dismay at the media coverage of the attempted murder of Issy Stapleton, age 14.

Both local and national media coverage of Issy’s attempted murder have emphasized her mother’s alleged stress, the “burden” of Issy’s disability, and the insufficient state of autism services today (although Issy had returned home from an intensive 6-month residential placement less than 72 hours previously.) Rather than rallying with sympathy and support for the child victim of attempted filicide, media coverage has consistently attempted to excuse and justify her murderer and paint the person who tried to kill her–her own mother–as the “real” victim.

This is abhorrent.

The facts are these: every child deserves the right to grow up free from violence and abuse. When a parent attempts to murder their child, they violate that basic social contract. Kelli Stapleton tried to murder her daughter. We do not accept any excuses for the murders of nondisabled children; disabled children deserve this same basic social protection. When someone tries to kill us, the crime is not that we had the audacity to be disabled–it is that we were murdered by the people we trusted and relied on most.

The Autistic Self Advocacy Network forcefully denounces the shameful approach the media has taken in wake of this tragedy, and send our support and sympathy to Issy. We wish her well, and above all, we tell her: what your mother did was not okay, and it wasn’t your fault.

We call on media everywhere to do right by Issy: address the appalling double standard in coverage. Report responsibly on a story with profound and unsettling social implications. Tell the story of the victim.

Stand with Issy.

Institute of Medicine’s Committee on Approaching Death Requests Public Comments Via Online Survey By November 1st

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I’ve previously reported on disability community efforts to influence the workings of the Institute of Medicine’s Committee on Transforming End-of-Life Care, now renamed the Committee on Approaching Death.  At the outset, NDY filed comments and issued a press release urging the Committee to add disability representation, specifically Kelly Buckland of the National Council on Independent Living, to its membership.  Disability representation was not added.  (It should be noted that the National Council on Disability’s Fernando Torres-Gil is a member of the Committee, but his background and expertise is in aging rather than disability.)

At the Committee’s second of five meetings, held in the Bay Area in California, DREDF’s Marilyn Golden provided public comments about some of the forms of discrimination that people with disabilities face in the health care system.  She told the story of Terrie Lincoln, whose parents were pushed to end her life after a care accident rather than give her a chance to recover and live with quadriplegia.  Fortunately, her parents fought for her and she’s glad to be alive, now raising her own young daughter.

At the Committee’s third meeting, NDY issued a press release and provided both video and written public comments about problems with Physician Orders for Life-Sustaining Treatment (POLST) that negatively impact people with disabilities.

With only two meetings left before its final report, the Committee is providing one last avenue for public input via an online survey, consisting of six open ended questions.  The deadline is November 1st.

The introduction defines those who are “likely approaching death” very broadly:

To help the committee with its work, individuals and organizations are invited to share their thoughts about care for people who are likely approaching death. This includes people who have a serious and progressive illness or condition (disease that is growing or spreading or physical condition that is worsening).

Comments are invited in any or all of the following areas, presented in six questions.

Question 1: If you are an individual living with a serious progressive illness or condition, or a loved one of an individual please describe your experiences receiving care. Your stories may include how you have talked with health care providers, your family, and friends; how you have discussed and reviewed your spiritual or religious needs, your finances, or any other issues. Your stories may also include what you liked and did not like about communication with your providers and others who gave you support, treatment approaches, or any other aspects of care.

Question 2: If you are a family member or friend of an individual who passed away, what care or supports did you need and/or receive while your family member or friend was in the advanced stages of their condition. What care or supports did you need and/or receive after they passed? What care or support did you NOT receive and wish you had received during the illness, at the time of death, or afterwards?

Question 3: If you are a health care professional, please tell us about your experiences in providing care to individuals with serious progressive illness or condition and their families. What are the problems, opportunities, challenges, and successes you encounter? Does the term “end of life” impact the willingness of the individuals you work with to engage in the provision of care or the willingness to receive it? Please indicate what type of professional you are (discipline/specialty).

Question 4: What do you see as the biggest barriers to care (for individuals with serious progressive illness or condition) that is appropriate and easy to access?

Question 5: What three changes in the U.S. health care system could improve care of individuals with serious progressive illness?

Question 6: If you have additional thoughts about improving research, care, and education for or about individuals with a serious illness or medical condition who are likely approaching death, or if you would like to share information related to the committee’s work, please use the space provided below to do so. You may also email documents or articles to support your testimony to eol@nas.edu.

It is painfully clear that people who “have a serious and progressive illness or condition” face many barriers to accessing quality health care.  DREDF and its partners have done some major work on health care disparities and discrimination against people with disabilities.  Recently DREDF, NDY and others submitted public comments on the nondiscrimination regulations under the Affordable Care Act, and the IOM Committee on Approaching Death needs to be aware of all of the issues raised in those comments.

But sometimes it’s our personal stories that convey the issues most effectively.  Here’s a chance to write yours, or the story of someone you know.  We should have been a major voice in the membership this Committee, but this online survey is the vehicle we have.  Please use it by going here and answering one or more of the six questions.  You can make a difference! – Diane Coleman