As part of a canadian medico-social group called the Idea Catalyst (www.ideacatalyst,ca), I wrote this little piece, which might be worth sharing:
In the ICU, I feel that what I do falls into three broad categories:
#1 good: thank goodness for modern medicine we have a chance to save this one.
#2 unclear but necessary – chances are so-so, but hey, sometimes they squeak by, and in truth, the system needs to practice for those in point #1.
#3 not good. I think I might have to one day answer to a higher power as to why I chose to use resources and skills to extend someone’s life by a few days or weeks at the cost of (a) his or her own suffering and (b) a huge societal cost with essentially no benefit other than the medical staff and the family being able to say ‘we tried everything.’ And while that may have some value in a utopian world, it simply isn’t fair to other patients and the next generation to squander our resources.
It is understandably difficult and unfair – for both the family and the health care providers – for the first encounter/discussion entering on the fact that we don’t feel we should be doing “everything” we can. It obviously doesn’t get the therapeutic alliance to a strong start unless they were already of that opinion. Having had the opportunity to work predominantly with a number of cultural groups with strong beliefs about end-of-life (e.g. do it all for as long as imaginably possible), I think this movement needs to start not at the entry to the ED, the ICU or the wards, but rather sometime in high school. Death needs to be de-taboo’d so that individuals get to express what their wishes are, and avoid unnecessary suffering themselves, but also to their families, who become wracked with guilt and, in many cases, take what is perceived as the guilt-free road of telling us to be aggressive in our care and interventions.
I can’t even tell you how many times I have heard “oh no, if it was me in that bed I wouldn’t want any of this, but I know he/she would, she really wants to live…” That’s fear and guilt talking.
I’ve long had the idea of doing a documentary on end of life, mixing social and medical data, and interviewing laypeople who have had experience in this – themselves as patients, as family members, etc, as well as health care workers at all levels. Just so anyone watching gets a good idea of what mechanical ventilation is, what CPR is, etc, what outcomes are at various ages, etc… This could be watched once or twice during high school, with the assignment of discussing and recording with parents and grandparents. There you go. Discussion has begun. I think we’d save millions with it. I’ve discussed it with a couple friends and colleagues, and hope sometime to make it a reality.
And I think if people start realizing that stretching out Grandpa Joe’s last days may cost little Johnny his free health care when he grows up.
Check out a great paper by my friend Marco:
Vergano Gristina futility 2014
Love to hear comments, naturally.
PS for you unfortunate readers south of the Canadian border, much of the social responsibility issue isn’t really an issue, when in a private system. It is, however, our reality and can’t be ignored.
I think that if we fail to define the ethical framework within which we operate, all our work (regardless of our abilities) is just useless.
As technology advances and end-of-life issues grow, we must not lose our capacity for moral judgment, otherwise we cease being doctors and become skilled technicians.
In an ICU, appropriateness should come before anything else, and ethical skills should be like a big box that contain everything else.
Thanks Marco and great article!
I added it to the main text, for those who don’t make it to the comments!
Great article Phillipe, it was a pleasure to read it. Unfortunately, there is the vast majority of doctors who don’t think that way, who will still do everything and wait for the miracle that never comes. And the only thing that comes out is fluid out of patient’s every pore.
And it is not about cynicism, it is about letting go.
Your post makes the point very well and I feel to be on the same wave length. I think making a documentary it’s a great idea. In our ICU (Turin/italy where I’ve been working with Marco for many years) I used to videotape the experiences of our patients during the examination at the follow up clinic one year after the admission for a critical illness. Despite the data you can collect and share with your colleagues, nothing has been more effective then 15 min of our patients telling us directly how they are, what they feel, what they remember or not remember, what they dreamt… The more I’m working the more I feel the the “gut” has got his reasons that the brain will never understand…