Rosemary was 88 years old when she was admitted from the nursing home straight to our ICU. She'd aspirated her food again (it seems she was being fed while lying flat on her back) and had pneumonia again. This was a recurring theme over the last couple of years. Her other medical problems included longstanding lung disease and a less than perfectly functioning heart valve.
Rosemary had done her homework and signed an advance directive. We had a copy of it already scanned into her electronic chart. It said that she didn't want her life prolonged if the burden of the treatment outweighed the likely benefit. Rosemary directed her surrogate -- the "power of attorney" who got to make decisions on her behalf -- to take into account, among other things, the cost of life-prolonging therapy and the amount of suffering she'd have to endure.
There's no evidence that anyone looked at the document and no evidence that her family took her wishes into account. The ICU team practiced excellent, but conventional, medicine. She was placed on BiPAP -- a tight-fitting mask that helps push air in and out of your lungs -- and antibiotics. She rallied and went to a regular floor, but within a day or two her lungs and kidneys began to fail. So back to the ICU she went on her third day in the hospital. Now, someone did actually talk with her family and made her DNR -- if her heart stopped she'd be allowed a natural death. And the ICU physician recorded a conversation in which he advised that Rosemary had more than a 90% chance of dying. But her kidneys were failing. So the kidney doctor came, and before much time had passed Rosemary was getting dialysis. A cardiologist was asked whether she would benefit from an attempt to open up her damaged heart valve. (Thankfully, she said no.) And of course she was back on BiPAP and antibiotics and all the rest. As her conditioned worsened, the intensity of her treatment increased. On hospital day #10 someone wrote that the family was "considering a palliative approach." I was called in the evening and asked to see the patient the next day. But she died at seven o'clock in the morning on her eleventh hospital day.
I reviewed the medical record, and I was struck by an important omission. I could find Rosemary's x-rays, and her lab tests, and a meticulous record of antibiotics and all sorts of other medications she had received. I could easily locate and follow the biological reasoning of the kidney specialist who'd recommended dialysis, and I understood why the cardiologist said no to a valve-opening procedure. But nowhere in the record could I find Rosemary. I couldn't figure out what kind of a person she'd been, what mattered to her (apart from the legalese of her advance directive), what she cared about. There wasn't a single word about what her family felt or how they saw things. There was no answer to the most important question a surrogate faces: "What do you think Rosemary would want if she could speak for herself?"
As a palliative medicine specialist, all I have about this case are "why" questions. Why were Rosemary's wishes not acknowledged and taken into account? Why would anyone even offer dialysis to a patient already felt to have nine chances out of ten of not surviving this hospitalization? Why didn't the DNR discussion expand to a broader dialogue on what was the most compassionate and humane thing to do? Why did the doctors pretend they could reverse Rosemary's many medical problems when they knew they couldn't? And -- at the risk of appearing self-serving -- why did they wait so long to call for a palliative care consult? One of our strengths is helping patients and their loved ones identify their goals and then make informed treatment decisions based on those goals.
We have to be honest about the information gap in medicine. Even in the era of the Internet and Twitter, doctors still hold the cards because of what they know and how they present things. A recent issue of the journal Health Affairs described this dynamic in an article entitled "Driven to Dialysis? A Very Sick Nonagenarian Develops Kidney Failure." I think it should be required reading for all surrogates and persons holding health care powers of attorney -- not for the specifics of dialysis, but for how the health care system slants inexorably toward aggressive intervention regardless of the context.
The other day we had something called National Health Care Decisions Day in America. It was a day designed to get people to "have the talk," to discuss with their loved ones what mattered to them most in the event they got really sick. I don't know what happened in Rosemary's life when she signed her advance directive. I don't know if she and her family talked, and if they did, how that conversation went. I do know that signing a paper is not enough. Doctors have to read it, and surrogates have to advocate for it. That this patient's story is so typical is part of what ails the American health care system.
In the middle of the testing, and the dialyzing, and the BiPAP'ing, and the consulting, one question remained unanswered:
Where was Rosemary?