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. . . .
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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
Thank you, Diane Coleman, for sharing these comments with your readers. I would, also, like to thank you for teaching us that we must be proactive in our own behalves because of the discrimination and prejudice of the medical/insurance entities against both the chronically disabled and the very elderly.
While we, the elderly/disabled may believe that we are “full code” and that everything will be done to save our lives when we are treated and hospitalized unless we use an advanced directive to refuse treatment, or unless the treatment is deemed “medically futile” by the hospital/physician under some due-process procedure, this is a mistake. Our “full code” status is under attack and has eroded over the years in the service of fiscal expediency for Medicare and private insurers. Patients are “product” to be managed for “profit” .
Obviously, there is great need to WARN about the connection of medical futility to fiscal futility in view of the protocols of Medicare/private insurance that refuse reimbursement to hospitals/physicians when elderly/disabled patients exceed the Diagnosis Related Group (DRG) Caps or there is non beneficial over treatment, errors, and the complications thereof. The elderly and the disabled are the most likely to exceed DRG Caps and to suffer complications, aren’t they?
The misuse by physicians/hospitals of unilateral ( default) covert and overt DNR Code status to limit treatments that they KNOW will not be reimbursed by Medicare and its partners, BIG Insurance, may be epidemic.
However, the Bioethicists have failed to blow the whistle and the law of the 1991 Patient Self Determination Act is being circumvented both as to the “right to die” and “the right to live” under Medicare law.
Who will blow the whistle for us? Does the Institute of Medicine have the power? Let’s hope so!
I have submitted my comments with great hope that someone will listen.
My comment is on the earlier blog post (of Oct.8) and I answered questions on the poll site via the link. Always, thanks for the links. My answers to the poll/survey questions were fuller than my comment due to memory….but I knew to do the poll answers first, chuckle.