Tuesday, April 27, 2010
To die or not to die?
I have a thing about terminal illnesses and the media, and how we as a society look at them and "survival", whatever that means. It's a subject I think about a lot because, when you're in the hospital, there will always be a certain number of patients who are pretty much just biding their time before they die, from a clinical standpoint.
Those patients may or may not know whether they are dying, though, and even if they know, may or may not be willing to accept that. As a community, doctors have moved away (and been pushed away) from paternalistic medicine, in which doctors called all the shots regarding future care, and sometimes did it without the patient even knowing. In today's world, the patient's wishes and goals for treatment outcome are the first priority, and it is the reason we are so focused on explanation of risks and benefits of treatment vs non-treatment. The result of all this is that when a patient has a terminal illness, we have to tell the patient that, and the first question that comes up is "How much time do I have left?". The doctor's knee-jerk response, at least inside the brain, is the statistical probability of survival at a 6 month, 1 year and 5 year interval. It is just AWFUL to watch someone fight and fail fighting what is, clinically and statistically, a losing battle. So we stick to the numbers, and don't give hope.
The reason I was thinking about this situation is that I came across 2 articles today, on patients who have had terminal illnesses and how they chose to deal with them. The first one comes from the NY Times, titled "17 Years Later, Stage 4 Survivor Is Savoring a Life Well Lived". In it, a writer details her way of celebrating the time-till-death that never was - she was given about 2 years to live following her breast cancer diagnosis, and is now celebrating 17. She posts to other Stage 4 survivors to give hope and a reminder that she is still around, defying expectations. The second article comes from CNN, titled "Death at 25: Blogging the end of a life". This details the life and death of a brave 25 year old diagnosed with cystic fibrosis, who used her blog as a way to chronicle and accept her path towards death, while still fighting.
I don't know which is better, honestly. Of course, everyone's story is personal. And everyone has the right to speak to the truths of their lives. But I always wonder about the other patients and their families. Do they read these pieces and think "Hey, you can BEAT it!"? I remember a flurry when Patrick Swayze announced his diagnosis of pancreatic cancer - everyone declared to the media that he would BEAT it and SURVIVE and be this magical story, and I felt awful second-guessing that, because I knew the 1-year survival rate was dismal. I just didn't think it was fair to give false hope via the media, and make other families of pancreatic cancer victims feel miserable when their moms or dads died. Is that the right message for someone who, statistically, won't survive? And how are we defining beating it, anyways?
I personally don't feel society gives enough credit to those brave enough to die with dignity, and know when to stop. But I imagine that if I had been in that brave young girl's position with cystic fibrosis, I would want to have some hope despite all the medical reasons to say no. One needs hope to live, and thrive, and look in the mirror everyday and say that you didn't take a step backward in life.
I just don't know where the line is.