I would like to take a moment to frame this musing with a patient vignette. His is a totally made-up story but it reminds me of a number of patients I have cared for already. The patient is in his 30s, has a traumatic car wreck but walks away unscathed... until a few days later when massive internal bleeding is discovered in the ER when he turns up dizzy and then stops breathing. But despite what becomes a sudden cardiac arrest, he lives. Kind of. He can't swallow or breathe alone or respond to the world, has constant seizures that require him to be restrained, and shows zero improvement after a month in the hospital. Or maybe she's in her late 70s, has a big blood clot in her lungs and loses consciousness a few minutes before her daughter finds her. The clot was caused by cancer. She has been in a coma for 3 weeks and the family wants aggressive chemo. Or maybe he is in his late 60s, just had a third heart attack, and is now taking 15 medications a day to combat heart failure but is not improving and his decline is only marginally being slowed by all the medications and the frequent short trips to the hospital.
I should also add that my routine is to pray and/or think good thoughts about every patient I come across every day with every prescription I fill and every one I hand out. It helps me keep it in perspective, that everything I do counts and is for someone with a family and friends who matters. This gives me a lot of opportunities to think about what would be the best outcome (I hope this patient gets better or gets to go home or isn't in pain any more or gets a good diagnosis soon or... dies soon so the suffering ends?).
When we enter a healthcare profession, there's a code of honor or ethics or whatever it's called in that profession. Here's a copy of the Pharmacists' Oath. http://www.pharmacist.com/oath-pharmacist I often think about the Hippocratic Oath too, the Declaration of Geneva being the modern version that I find keeps the spirit of the original well. http://www.wma.net/en/30publications/10policies/g1/ Of course I also consider the idea that in the health professions, we might want to or ought to "first do no harm."
I worry that too often we get busy doing everything we can to extend life and we forget to consider what kind of life it is we are extending. If it's a life that requires multiple machines to permanently sustain and there's no ability to interact with the world, I'm not sure it is one I want for anyone. In some ways I'm disappointed that any ethics committee anywhere lets families lobby for this. In other ways, I get it. It's hard to think about death and harder still to accept that the time for letting death happen has come for someone you love. But I keep asking myself if we are harming patients and their families by preventing death at such great lengths with such extraordinary measures. (You will note that I don't mention about if we should offer assisted suicide to terminal patients, and I think that's a separate issue and maybe I'll write about that eventually but not now.)
This year for the Festive Winter Holiday, I'm asking my extended family for copies of their advanced directives and living wills. I don't want to find myself sitting in a hospital room with an almost-dying loved one who had a stroke and not know if they want the full court press to live the maximum number of days even with some or severe cognitive impairment or if they'd rather have no intervention and jut be allowed to die. I don't have lots of siblings or siblings-in-laws to consult about parents and grandparents or each other if we have really bad luck. I spent many hours considering my choices about what I want and what I'd want for my girls if I were unable to make decisions for them and they were still under 18. Now that I have seen more patients with end of life stalling interventions, I am updating a few things but for the most part, I'm feeling secure in my choices. I want no treatments that extend my life unless they extend my capacity to be me as well. I want only palliative care if I have stage 4 cancer or a cancer with a low increased survival with treatment. If there is no chance of recovering nearly all of my mental faculties, I want no feeding tube or ventilator.
But above all, I hope that we all talk more about the choices we can make at the end of life and that we do so well in advance of needing to make them so it's simpler and family and friends don't have to feel guilty if they don't demand full code (all the resuscitation possible) for a patient who is unconscious, on dialysis, a ventilator, and has a feeding tube permanently placed.
If you are curious about how to write a legal document for your state, here is a link to a wealth of resources that can help you and your loved ones puzzle through it all. If there's one thing I've learned from working in hospital and clinic pharmacies, it's that it is never too soon to consider what you want the end of your life to look like because it might come remarkably soon. http://www.nhdd.org/public-resources
I completely agree with you.. I feel the same way about these things and especially about these decisions for myself. I would hate for anyone to feel they had to keep me alive when I am no longer functioning as myself and on my own.. it isn't fair to the people around me, but also, what sort of life would it be for me at that point? No thanks. I want the memories of me in this world to be of me laughing, playing with my kids, those sort of things, but laying in a bed being fed through a tube. I know these are such hard choices, especially when it comes to making them about loved ones, but sometimes I do think technology has come so far that we feel pressured to keep people alive longer than they are really meant to be here. Good, thoughtful post!
ReplyDeleteI was totally thinking about this post while I watched Grey's Anatomy last night. Weird. :)
ReplyDeleteI definitely agree with you, and this is reminding me to get the dang advanced directives, POAs, etc. done. Tough stuff...