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
It’s been awhile: summer and the heat is a tough season for me. I went to the link and made comments. I’m sure my comments will be similar to others
in re money for homecare attendants. What specific tale I told was of my
friend of 44 years (my goodbye to her is the piece of art on the right end of the 11 pieces of art on the link to my art webpages).
For us, which is not in the comment: I made the art when her sister called me to say that she had to correct her first call to me, that my friend was not dead.
What happened at the “hospice” in June, 2013? My friend got a call from the hospice, really a floor of the nursing home, NYC, where my friend went after months severely escalated in her diabetes and related illnesses, escalation caused by (are you ready?) a flu shot in Jan. 2013. She had had an immediate reaction and was in and out of hospital for several months.
Her sister, also my friend, is disabled. When she wanted to bring my friend
out of the nursing home, to their home, she was told she could only get 2 hours a day of home care attendant for her sister, who needed to be moved,
etc. The sister is too disabled to move her sister and also nearly blind, herself slightly above income (retired worker) to qualify for medicaid.
So the sister who was in the nursing home stayed there until she “died”.
The sister at home was called by the ‘hospice” that her sister had died, late
at night. She called the funeral home to get the body, but they were turned away. In the morning, the sister went to the nursing home/’hospice” and was told, “Your sister is not dead. The nurse didn’t realize she had a pulse.”
That’s a hospice, 2013, NYC. My friend died several days later.
I made the art while she was still alive, but unconscious and my spouse, my
caregiver, an old man himself, – we are in our 70s, but still working due to $$$, described the art to the sister who is nearly blind, with my request to take the art to the hospice and describe it to her sister, in coma. She also hung the art next to the bed. I’m still shocked at the “hospice” behavior.