“One has to decide whether one’s fears or one’s hopes
are what matters most.”
Passing by the New Release shelf at the local library, I quickly noticed a new title out by Dr. Atul Gawande, one of my fav authors and an experienced surgeon at Brigham and Women’s Hospital. He’s also an excellent writer who has often published medical-related essays in places such as the New Yorker and elsewhere. He’s also written a few other titles, all with a medical connection and mostly very good. (I’d class his “Complications” title as excellent really. You should check him out if he’s a new author to you.)
This new title focuses on human mortality and the role that medicine plays in the lives of aging Americans and then death. Medicine can do many things, but its main role has developed over time to sustain life through addressing medical problems. And you know, medicine is very good at that. However, with medicine being an art (as opposed to a science with a definite right and wrong answer), physicians are not always so skilled with squidgy end-of-life issues (including the dying process prior to death).
This sounds such a morbid and depressing book, but Gawande takes a very serious topic and asks tough questions (of himself and of others): When should expensive medical approaches stop if a patient is terminally ill? Who should decide that point and when? Is it the doctors? The family (especially if the patient is very ill and unable to voice concerns)? The patient him- or herself (if it’s possible at that point)?
Obviously, it should be the patient in question, but end-of-life issues can be extremely difficult to talk about for the many players in that situation. It can be frightening and confusing for everyone involved, but I totally agree with Gawande when he writes that this tough conversation should be a normal part of the living (and dying) process. That’s where physicians need to be in a leadership capacity, not in telling families what to do but in finding out what the actual patient wants. Does s/he want endless life-saving measures at the end point? Or just relieve the pain and suffering?
By taking real-life cases of patients (terminal and otherwise), Gawande talks us through the decision process of how the medical world treats terminal and elderly people. Medicine can prolong a life for much longer than perhaps is best for the patient, but what does the person in question really want? That is where the hole is in most medical care – there is often little consideration of what the patient in question really wants — what is important to them and not what their family members (or their health care team) want. It gets complicated for everyone unless someone skilled in the dying process can jump in and ask the right questions.
This is not an easy book to read, but it’s so helpful as it normalizes the aging/dying process for millions of Americans. A lot of people have prepared for their actual death with wills and other legal documents signed and in the lawyer’s office. Where there is often a gap is the actual process of dying: the months/weeks/days when one slowly loses one’s health. (Gawande calls this the ODTAA Syndrome: One Damn Thing After Another when a person’s health starts to fail like dominoes.) Some people will, of course, die suddenly but millions of people will have a long journey ahead of them in the dying process, so Gawande also addresses the cultural treatment of the elderly and the infirm with regard to assisted living, nursing homes, and the tough battle it can be when adult children take over the decision-making process and players disagree about the next steps. It’s a debate between the issues of safety and happiness. Which is more important?
A very provocative read for me. I was diagnosed with pancreatic cancer in 2001, and as I had a fairly weird type of tumor, it took a good six months to get a correct diagnosis and then a plan of action. The following six months (and the following treatment) pretty much changed my life on several levels, one of which was addressing and accepting my mortality. (Well, we all will die, really, but pancreatic cancer has an extremely high mortality rate so this had to be addressed. However, it’s not always easy to start the discussion.) BTW, I’m all good and fine now, and I have a “new” normal in my life now – I’m very happy that I have this chance.
Knowing that it was quite possible that I could be dead by the end of the year changes one’s perspective and forces one to live more in the moment: life is made up of small moments so how to make sure those little things are good? I’m not going to go all Deep and Meaningful on you, but suffice to say, Gawande’s book contains much needed timely advice for everyone, sick or not. When your loved one is in the ICU intubated is not the time to have these dialogues.