The second of six expected meetings of the Institute of Medicine Transforming End-of-Life Care Committee was held on May 29 at the Stanford University School of Medicine in Stanford, California. The topics addressed by the Committee include health care and long term services and supports issues facing people with chronic conditions and disabilities who may have years or, as one presenter said today, “decades” of life remaining.
The meetings are webcast, and an hour is set aside for public comment by people who register in advance and attend the meeting in person. Last week, Not Dead Yet submitted a written request for the opportunity to provide public comment during Committee meetings via teleconference or Skype. We hope that such an opportunity will be available by the next meeting, scheduled in July.
Meanwhile, the Committee accepts written comments. NDY previously submitted comments on the membership composition of the Committee, and plans to submit written comments on a variety of substantive issues in the near future. We’ll keep you posted on those efforts.
Fortunately for the disability community, Marilyn Golden, Senior Policy Analyst at the Disability Rights Education and Defense Fund (DREDF), attended the second meeting and provided the following powerful public comments on behalf of the disability community:
Public Comment by Marilyn Golden, Policy Analyst, Disability Rights Education and Defense Fund (DREDF) Before the Institute of Medicine Transforming End-of-Life Care Committee
May 29, 2013
I’m Marilyn Golden, Senior Policy Analyst at the Disability Rights Education and Defense Fund. We’re a leading national law and policy center on disability civil rights.
We have many concerns – –the common thread is the many stories we hear from people with disabilities, again and again, illustrating that our lives are seen as less worth living than others——so much less that health care providers too often think death is the correct course. They press this viewpoint on us, our families and sometimes even overrule us when we disagree.
Let me tell you a true story about a young disabled woman who worked for the Center for Disability Rights in upstate New York. At the age of 19, she’d had a car accident . . . . While lying in a hospital bed on a ventilator . . . doctors would ask her mother if she was ready to “pull the plug”. “Why would I want to do that?” she would ask. The doctors answered, “What kind of life will she have—she won’t be able to dance, walk, work, have a social life, or be independent.” Over and over.
Terrie had a rough time medically, but eventually, she was spending hours a day off the ventilator and the doctors were still asking if she wanted to live with this condition. If she chose no, they would keep her off the ventilator and she would die, with morphine for comfort.
When she returned a year later, with a power wheelchair and no ventilator, the doctors’ jaws dropped to the floor and their eyes began to fill with tears. They always meant well and thought they had been doing the right thing.
Today Terrie is still working for disability rights and has a darling young daughter. We’re so glad she had the wisdom to go against her doctors.
A related problem we see in the end-of-life field is a deep misunderstanding that the only problem to be addressed is over-treatment at the end-of-life. A balanced approach would address something rarely acknowledged: that there is another problem, under-treatment at the end-of-life, and pressure against life saving treatment, resulting from health care disparities, discrimination, including discrimination against people with disabilities, and economic considerations.
These issues come up in many ways:
- discriminatory “futile care” policies allowing healthcare providers to use quality of life judgments to overrule our decisions to receive treatment;
- discrimination in organ procurement and transplant practices; and
- discriminatory rushing to judgment and denial of life sustaining treatment of newly injured persons based on hasty and unsupportable diagnoses of “persistent vegetative state” (PVS).
Lastly, on another point, we and many disability organizations oppose the legalization of assisted suicide, which is just too dangerous. It’s a prescription for elder abuse, and when legal, it’s the cheapest treatment available, a frightening thing in our profit-driven healthcare system. Terminal diagnoses are too often wrong, the so-called “death with dignity” safeguards are hollow. Because the dangers so outweigh any benefit, the legalization of assisted suicide should be opposed.
Sincere thanks to Marilyn and DREDF for delivering this important message to the Committee. Let’s hope the members and staff listen carefully. – Diane Coleman
mariln,
thank you.
yeas ago i was diagnosed with epilepsy and met dr. spitz. he saved many lives. finding dctors like this are so hard nowadays. what yo say is hnestly true an if you need some help call.
Wonderful comments by Marilyn Golden and reader. My reaction is
that doctors are often stupid and wrong and we, members of the
disability community are generous in the way we word the observations
of doctor ignorance which often has lethal consequences. Yes, I
know that diplomacy is necessary at meetings of doctors, chuckle.
Hopefully, the EOL Committees will become aware that DNR Code Status is solicited from elderly/disabled Medicare/Medicaid patients who are hospitalized through education by the hospitalists (paid employed physicians who work for the hospitals) as to the futility of CPR for the elderly/disabled and who are further encouraged by the hospitalists to refuse CPR or Intubation, of whatever when hospitalized for the purpose of placing ORAL, un-witnessed DNR code status in the charts of elderly/disabled patients.
DNR Code Status can than be misused by hospitals to shorten the lives of elderly/disabled patients without having to prove that a live-extending or life-saving procedure is “medically futile” under any existing due-process procedure developed by the hospital or the state that permits hospitals to legally deny life extending procedures to patients who want them.
Obviously, life-extending procedures are often unilaterally denied to patients when these procedures are not reimbursed by CMS because they are deemed non-beneficial, or an error or omission under Medicare reimbursement protocols that do not reimburse hospitals/physicians for over treatment, errors or omissions.
Of Course! Hospitals are happy to provide these life-extending procedures when they know that they will be reimbursed by Medicare and the private insurers who supplement or actually provide Medicare coverage under existing laws.
Elderly/disabled patients are merely product for profit for the physicians, hospitals, insurers, and suppliers but when CMS refuses to reimburse non beneficial over treatments, errors or omissions, the lives of the elderly/disabled are shortened to cap the costs of further treatment that will NOT be reibursed.
Unfortunately, the only value in secular societies and cultures in democratic Capitalistic Republics is the value of “money” and the sanctity of “profits” ——in my opinion, of course!
The Kansas City Star (McClatchy Newspapers) ran a story on their FRONT PAGE by Tony Pugh (with contribution from the Associated Press) on Saturday, June 1st, 2013, entitled “Safety Net’s Finances Improve.”
This article indicates that “Certain provisions of the health care low, The Patient Protection and Affordable Care Act, were also credited with improving the fiscal outlook of Medicare, the national health insurance program for older people and those with disabilities.”
The new law instituted a number of money-saving initiatives, such as cutting payments to hospitals that have high re-admission rates for Medicare patients. From 2011 to 2012, 70,000 fewer Medicare beneficiaries were readmitted because of complications from previous ailments.” (I’m sure the writer should have said “admissions” rather than “ailments” unless he was referring to A Diagnosis Related Group Cap for a diagnosed “ailment”)
Of course there is NO explanation as to WHY —as to the REASON there were 70,000 LESS re-admissions in this one year period 2011 to 2012. The writer, quoting Brian Cook, a spokesman for the Department of Health and Human Services, went on to say “At an average cost of $10,000 per readmission, the decline potentially saved the program an estimated $700 million,”
Was this $700 million taken out of the hides of those 70,000 elderly/disabled Medicare patients who were unknowingly placed on Observation (for many days sometimes) and who had to pay thousands of dollars out of their own meager savings for nursing home care?
Generally, these patients weren’t even aware that there WERE NOT in the hospital and were merely being observed.
THE SECRETARY OF HEALTH AND HUMAN SERVICES IS BEING SUED BY MEDICAL ADVOCACY IN A CLASS ACTION FOR THE MISUSE OF HOSPITAL OBSERVATION. Read “in the Hospital but Not Really a Patient” in a Google search.
I would imagine that all elderly/disabled Medicare patients who are “observed” also have DNR Code Status in their medical charts (with and without their consent) so in the event they DIE in observation, the hospital has legal protection. I think it was the giant drug corporation, McKesson, who developed the “software” for the Hospitals to use to determine which patients are “observed” and NOT admitted to the hospital, Apparently it is the Hospital and not the referring physician who get’s to decide because it is their bottom line that is affected when Medicare refuses reimbursement for errors, omissions, and non-beneficial overtreatment of the elderly/disabled. . .
It appears that THE Safety Net is for the financial arm of Medicare and the private for-profit sector and that the elderly/disabled on Medicare are paying for the safety net for Medicare and for the profits of its private partners. the hospitals/physicians, insurance companies and the drug manufacturers and the medical supply industry.
Too bad Americans did not see the value of Single Pay and taking profit out of the delivery of health care as was President Obama’s original vision. The compromise that becomes necessary for both political parties becomes necessary to protect the for-profit health care industry –the big insurers and the big drug companies — in this country –and it is the elderly and the disabled who will have their autonomy removed and who will earlier die for fiscal expediency.