Before I get into sharing my thoughts on the two previous blog entries, I wanted to share a little of the backstory that went into the inclusion of Terrie Lincoln’s story on the “How We Die” website.
Last month, I was contacted by Hannah Rosenzweig, who is working on soliciting stories for the “How We Die” series. You can read a lot about the content and goals of the team by reading this section of the site.
Hannah’s purpose in contacting us was to look for “end of life” or experiences about people with disabilities facing the “end of life.” I gave her a shorthand version of the complicated nature of the term “end of life,” which I’ve written about before. Like most people who use the term, she hadn’t thought about just how many diverse situations that innocuous term actually covered.
This provided an opening to pitch Terrie Lincoln’s story to Hannah. I gave her a brief outline of Terrie’s story as I knew it. She definitely found it compelling, but wasn’t sure what to do with it. I think she became hooked when I pointed out that if Terrie’s family had caved into the pressure to take her off the ventilator, we would now say that the family had made an “end of life decision.”
The rest was a matter of getting Terrie and Hannah to connect and communicate – which is how the story of how Terrie lived got to be on a site titled “How We Die.”
Every time I think I’m incapable of being shocked, something comes along to prove me wrong. When I read the first draft of Terrie’s account, I was stunned. It wasn’t so much by the specifics – we get stories like this from time to time and they are eerily similar – the grimmest scenario, with the assurance that the injured person wouldn’t want to live like that. If the family resists, the quality of their caring is called into question. It happens – I’ve heard similar stuff too many times to doubt it.
What really threw me about Terrie’s story is that this happened in two different hospitals in two different states. Could it be that I haven’t been cynical enough about how dangerous it is for people with disabilities in the medical system? And of course, William Peace’s account adds to that strange feeling that things are maybe worse than they seem – and have been for a long time.
Personally, I’m still trying to sort all of this out. But I think that I think it’s best and probably accurate to start out with some basic assumptions:
- These medical people aren’t “evil” or “bad” people, but operating from what they see as kindly, compassionate motives;
- They honestly believe that a young woman wouldn’t want to live the life of a quadriplegic;
- They honestly believe that most families would be better off without the “burden” of a family member with a significant disability.
I am going to go out on a limb and even guess that the fact that Terrie’s family operated from strong Christian beliefs may have been discounted by the professionals they dealt with as “irrational” as opposed to their own “objective” evaluations.
The mostly unchallenged and unquestioned belief in the objectivity of medical professionals (especially in terms of how they regard themselves) can be especially dangerous in situations where someone’s life hangs in the balance.
It’s dangerous because there’s nothing especially objective or rational in the belief held by the medical team that pressured Terrie Lincoln’s family that she’d be better off dead. There’s plenty of research that indicates that people with significant disabilities are much happier with their lives than medical professionals seem willing to believe is possible.
The trouble, I think, is that medical professionals are no more moved by research and factual information than the general public. What sticks with them are the worst memories – the memories of people dying after months of rehab/recovery; the worst points of adjustment to the realization of newly-acquired disability; the stressed-out and maybe cash-strapped families.
For hospital folks, there are no experiences with the power to provide balance to those kind of experiences and the emotional impact that comes with them. Discharges of patients are an unfinished story, with no closure, let alone a happy ending.
It becomes understandable (but not condonable) that some would jump to the assumption that it’s just better to get a peaceful, dignified death than to go through medical hell to live a life with a significant disability.
So what do we do about it?
First, we need more people like Terrie and Bill to tell their stories. And name names where we can.
Because if my thoughts are anywhere near accurate, no amount of teaching or education will be effective in changing the attitudes of medical professionals who engage in the types of behavior covered in the two stories.
So what will work? Exposure. Hospitals and medical professionals seem to hate the experience of having outsiders get a glimpse of some of what they do – especially if outsiders don’t like what they’re seeing.
Exposure and the threat of accountability won’t change attitudes, but it could have a powerful and lasting effect on behavior. I’ll settle for a change in behavior – it’s easier to measure. –Stephen Drake
I believe that the medical establishment *is* compassionate as a whole, BUT it’s also influenced by money — and the expense it takes to care for the disabled. I think that young doctors especially are conditioned to look for “cost-effective” solutions — which can lead them to pressure families into making “end of life” decisions when such actions are completely inappropriate and not what the patient wants. I must sound harsh and cynical, but I’m not. I, too, think the only way to force awareness and change is to *relentlessly* bring experiences like Terrie’s into the light of day.
Wonderful last paragraph:changing behavior.
In the two decades plus that I have
been disabled by chronic illness, I
have been learning about the ignorance of the medical profession.
In 1985, my physician of a decade, who had known me severe CFS/ME illness,
said that I didn’t have “a quality of life”. (He was referring to my severe illness, but pre-diagnosis of CFS/ME.) I got angry, and said,
“It’s my life, my only life, and I’m going to do it the best I can.”. I think he was feeling badly that he could neither diagnose my illness, nor “make me better”. Therein lies the crux.
If the medical workers can’t make someone “better”, i.e. fit what they think is “normal”, they can’t deal with it. It happens in terms of not being able to diagnose illnesses. I noticed it happening in Terrie’s story,too, beyond the quadriplegic disability.
I think I recall, hearing at the time, of doctors pressuring the family of Chris Reeves, in the first days, to “pull the plug” after he broke his neck, in the fall from the horse.
My own education began with my own disabilities. I had a very close friend, of twenty years, who had quadriplegia after falling asleep at the wheel of his car, until his death from MRSR (Mercr) the infection, contracted in a regional hospital after a few weeks where they were treating his
bedsores. His death was not from
his disability. Neither was Chris Reeve’s.
KaylaR and Sanda make good points. Like it or not, money comes into play when seeking medical treatment. Disability is indeed perceived to be expensive and, worse, labor intensive. Sanda touched upon the issue that disability is somehow seen as a failure or symbolic of the limits of medical science. None of these thoughts enter the minds of people when they get sick but they pre occupy me. I always worry when I see an MD or enter an ER. Is my life less valuable? WIll I receive the same treatment? Will I be over prescribed or under prescribed medication? Rarely do I encounter an MD and ancillary staff that see me, a human first, and person with a disability second. No wonder then people with a SCI are pressure into ending their life.