When Doing Everything Isn't the Right Thing: The Discomfort of Death

Mar 15, 2017

Medicare, which covers medical services  for older Americans, spends nearly a third of its budget on people in their final year of life, and more than half of that money goes for people who die within two months.  The University of Virginia’s School of Nursing thinks part of the problem is our discomfort with death – an insistence that hospitals do everything possible to keep loved ones alive.  Sandy Hausman reports on what the school is doing to change public perceptions.

Ken White is an administrator at UVA’s school of nursing and an expert on care that prevents suffering.  Many of his patients are near the end of their lives, and yet, he says, they or their families may be uncomfortable with the prospect of death.

“People believe that for my grandmother I want you to do everything you can.  People equate doing everything with the best care possible, and what we want is the best care, the right care at the right time, at the right place, and there are times when doing everything is just not the right thing to do.”

Doctors, nurses and other health care professionals may also be poorly prepared for the end – having spent years training to save lives. 

“And there’s not a lot out there in terms of continuing education for people  whore are in medical practice – especially in critical care and emergency rooms.”

White says it would be so much better if people gave some thought to their final days and spelled out what they want.

“If there’s not a lot of certainty that you’re going to be able to recover, how are you going to address the issue of hydration and nutrition?  We can keep your grandmother alive for a long time with a feeding tube and IVs, but is that the quality of life that she would have wanted? Are you part of a faith community?  Is it important for people to come in your room and pray with you, or would you prefer that not be done?  Often those kinds of things have not been discussed.”

Sometimes, people appoint someone to serve as a proxy – legally designated to make decisions if they’re not able to, but White says the job may not be right for certain relatives.

“I just had a patient, a couple of weeks ago, have a stroke – a very sudden event.  He was walking miles every day, but he had a stroke, and he went from being active to in a coma.  He had appointed his wife, however his wife was so close to the situation.  She found it really difficult to make a decision.”

He might have had an advance directive spelling out his wishes, but family members didn’t know where it was. 

“The one daughter said, ‘Y’know everything is in his phone, and I don’t have the password to get into his phone.’”

On Saturday, March 18 from 3 to 5 at Charlottesville’s Paramount Theater, UVA’s schools of medicine and nursing will join with Hospice of the Piedmont and Martha Jefferson Hospital to offer a free screening of the PBS documentary Being Mortal, hosted by Harvard surgeon Atul Gawande.

“All the stuff you learned about in medical school is just a tiny little bit of what it means to be good at our job. So many people I see – their death comes as a surprise.  Frontline takes you into the difficult conversations between doctors and patients.”

A panel discussion will  follow, and after that volunteers in the lobby will be standing by with forms and advice for those who want to create an advance directive on the spot.