Dr. Atul Gawande’s latest piece in The New Yorker, “Letting Go,” brought tears to my eyes multiple times. I have not read a lot on end-of-life care, and what I have read so far is often less personal and more theoretical – articles which tend to look at this extremely complicated and emotional topic from either the perspective of the patients and their families, who have to make wrenching decisions, or from the perspective of providers and how they do or do not work well enough with patients and families regarding this decision-making.
This is the first piece I have read that is from both perspectives and gives a genuine and personal sense of the deeply difficult discussions and decisions that are made…difficult for the patients/families and for the providers. Dr. Gawande found a way to communicate a complicated and emotional issue so that the reader almost feels like he or she is there, with that family and patient and with the provider, trying to make sense of everything and figure out what to do. And the reader is made to think about what he or she would do if faced with similar situations and decisions. With all of the talk of “death panels” during the health reform debates, there was a squelching of any conversation outside of health policy wonk circles relating to end-of-life care and decision-making. Dr. Gawande’s article, in a non-policy-wonk magazine, can help start to open the door to having these conversations among the broader public:
Spending one’s final days in an I.C.U. because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or “It’s O.K.” or “I’m sorry” or “I love you.”
People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.
The article, like his previous article on health spending, is getting a lot of attention in Washington this week. Our Campaign For Better Care and health quality work is focused on improving the health system to make it responsive to patient needs. Dr. Gawande’s voice expands the debate in a human way that can not be ignored.
-Deborah W. Wachenheim
