Sunday, February 14, 2010

Case with Deaf Cancer Patient Also Involves "Right to Know vs. Right to Decide" Issue

Thanks to Cara Kulwicki, I just heard about another example of how the medical establishment in the United States screws over people with disabilities.
"I’ve heard a lot of heartbreaking and enraging stories in my lifetime, but this still manages to rank pretty highly up there. Health care providers never gave a woman with cancer and her husband, both of whom were deaf, a repeatedly requested interpreter. And thus, they weren’t told for three months that she was dying."
I think I agree with everything in this article, except for one point that might seem trivial to others, but really isn't--at least not to many of us who have experience with incurable cancers. In Cara's post she said,
"Outside of a few strict exceptions (i.e. a patient is unresponsive or unconscious and in need of immediate care), everyone deserves and needs the right to make informed decisions about their course of medical treatment, and to fully understand their condition."
I'm not sure if she is saying that everyone (outside of those she excepted) needs THE RIGHT to fully understand their condition or if she means that everyone needs to fully understand their condition.

The issues surrounding just how much information a patient needs and/or should be given is one that we discuss in my incurable/terminal cancer support group on a fairly regular basis. Some patients really don't WANT to know when/if they become terminal. Some people find it counter-productive--and, quite frankly, terrifying--to be told this and prefer to simply live each day to the fullest, no matter what may happen in the future.

Once I found out my own cancer was incurable, I made it clear to all of the doctors associated with my care that I did NOT want to be told if they came to the conclusion that I was terminal. I let them know that, if they felt like they just had to tell someone, they could let my partner know--but only if they could do so in a way that I wouldn't accidentally overhear. It can be incredibly heart-wrenching to hear that you have X number of days/months to live when, at best, this is just a guesstimation.

I think the most important thing to get out of this case with the Nelson family is that patients with disabilities need to be able to decide just how much information they want to know about their care and, in order for them to do that, they need to have access to the same level of communication that non-disabled people can have with their doctors. However, this does not mean that patients should be (or feel) forced to hear a doctor say they should just accept death because their cancer can't be cured--which is essentially what a terminal diagnosis means.

Having been there and having known others who were pronounced terminally ill but have gone on to recover*, I can say for a certainty that not everyone with incurable cancer wants to hear that their doctors have concluded that they can't survive past a certain period of time. We are living evidence of why doctors shouldn't ever make a unilateral decision about whether a person should give up the hope that they may actually survive cancer.

Cancer Facts:

  • There is no type of cancer from which someone has not been cured!
  • There is no type of cancer for which there are no treatments!
  • Cancer is the most curable of all chronic diseases!

*In March, 1978, Richard A. Bloch was diagnosed with terminal lung cancer and told that he had three months to live. He chose to fight for his life and was declared cancer-free two years later. For the remaining twenty-six years of his life, Dick and his wife, Annette, devoted themselves to helping the next person with cancer have the best chance of beating it. Dick passed away in July, 2004 of heart failure. The R.A. Bloch Cancer Foundation continues the mission under Annette’s leadership.

1 comment:

MomTFH said...

I found you via The Curvature.

Wonderful post. Very thought provoking.

My one issue is hospice access. I am a huge fan of hospice, and think it is already underutilized. Most hospice care requires a terminal diagnosis. Those terminal diagnoses usually come with one of those awful expiration dates.

I think there may be a way of encouraging and funding hospice care, maybe with a "this is a type of situation that is likely to become terminal but isn't necessarily terminal this second" or, even better, "this is a person who would benefit from hospice. Period." And have it be known as palliative care, not the place to go to die.


Interactions that respect a person's right NOT to know about a terminal or otherwise serious diagnosis are also more culturally sensitive. Of course individuals vary, but we were taught in our Culture and Health class that some cultures have a much higher percentage of people who would not want to know.

The other research fellow in my program is researching attitudes and knowledge of hospice and end of life care. Some of the questions she asks are in regards to how much information someone would want about their own terminal status, and how comfortable people are, in general, about talking about death, or planning for end of life care.