End-of-life plans touch on a range of topics – from the kind of treatment a person wants to where they want to die. Religious rites and family traditions can also be part of end of life planning.
Decisions may include whether a person wants palliative care – meant to extend someone’s life – or hospice, meant to provide a level of comfort instead of treatment.
It’s something Dr. Hellen Ransom wants her first and second year students at East Carolina University’s Brody School of Medicine to understand clearly before they graduate. She teaches bioethics classes at the school.
“In dealing with the patient, you’re dealing, not only with not only the biology, you’re dealing with some of the social and contextual issues as well.”
One of Ransom’s students, John Hurling, said end-of-life wishes should be discussed like other important family decisions. He lost his father to lung cancer but said the last few months of their time together were more enjoyable since the family discussed it ahead of time.
“You talk with your spouse when you talk about getting a house, possibly having kids, decisions to get married, decisions to go on vacation…the passing of someone you love is another aspect of life.”
90 percent of people would prefer to die at home, according to a study by the Kaiser Family Foundation. Only about a third of Medicare beneficiaries actually do.
“From the time of diagnosis to his death was about two-and-a-half months. During that time, we had the best Christmas we’ve ever had in our family. He had a wonderful tour of the East Coast where he got to visit all of his grandkids, he got to see all of…his kids once again. And then he passed, in his home in West Virginia and…it was on his time, in his control, as a pain free, very wonderful, peaceful end.”
End-of-life discussions are typically difficult for families and physicians to have – even with Medicare funded incentives.
“These are discussions that are not happening at all or not on time. Roughly, maybe between 25 and 30 percent of persons in the U.S. have an actual advance directive of some kind. So chances are when I encounter families, they do not have written directives.”
Ransom said students often have their mind on saving lives and a class on guiding someone toward the end of their life can seem counterintuitive.
“Ways that we try to get students to grasp some of these concepts is through something that’s traditionally done so we present a case to the students and just try to give them a chance to work through it.”
Ransom also tries to keep things relevant by searching headlines. Right show, she and her students have been following Jahi McMath, a 15-year-old girl on life support who was declared brain dead by the state of California in 2013. Her family has since moved to New Jersey, where state law allows them to keep her alive.
“It highlights some of the issues of end-of-life and how everyone has kind of a definition of ‘end-of-life.’ There’s a personal definition, there’s also a state definition of death.”
Hurling said these bioethics classes have given him completely different notions on the relationship between a physician’s place between life and death.
“One of the largest concepts and something that I thought was so revolutionary to me…it’s to shift the paradigm, instead of fighting for the patient to live, you’re fighting – and this might sound a little off – you’re fighting for the patient’s death.”
Ransom said communication about end-of-life wishes can be a major obstacle physicians face. Breaking down complex medical procedures and decisions can be difficult to explain to non-professionals, especially if the grieving process has already begun.
“There’s a small number of providers but enough who will say things in such a way that it goes over the family’s heads, and so there’s not an ability to bring the information down to a level where everyone at the table can get exactly what’s going on.”
It’s also one of the most common pitfalls for families and other caregivers. In a 2003 study cited by the CDC on Advance Care Planning, 65 to 76 percent if people didn’t know any end-of-life plans were made for them.
Ransom said North Carolina has legal checks in place apart from the standard “power of attorney” privileges.
Power of attorney paperwork must be filed at a county Clerk of Court office. Fees vary depending on the “principal” – the person who is being represented – and how much property they own.
Living Wills can also be filled out and made official in the presence of two witnesses and a notary. In that document, patients can specify at what point end-of-life directives apply, whether or not a physician can decide to prolong their lives, and want to continue receiving hydration and nutrition.
“In North Carolina, there is a hierarchy for medical decision makers. If there’s no documentation, if there’s not someone appointed by the court, then it goes down like a tier form of, say, family members, so you’re married, you go to your spouse, if you’re not married, then adult children, then parents, so it does provide some guidance.”
But if that isn’t explicitly discussed and decided on beforehand it can lead to clashes between families and healthcare professionals, perhaps at the expense of the patient.
“Even with that guidance, you may have a legal framework to provide as far as surrogate decision maker but there is still some reliance on the family input as far as what decisions can be made.”
A particularly famous “worst case scenario” came about a decade ago with the Terri Schiavo case. Though a legal framework was in place, it became a drawn out with a public debate.
“There was a decision maker, her husband. But unfortunately, the circus of the media and other, different, political issues just kind of got in the way of, I think, a private decision the family should have been given support to make.”
East Carolina University and Vidant Medical Center are hosting an end-of-life decision discussion at an upcoming event on Tuesday April 25 at Brody Auditorium. The noon event will feature Dr. Lucy Kalanithi, a neurosurgeon and author of “When Breath Becomes Air,” a memoir of her late husband.
Registration is free but required. I’m Chris Thomas.
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A pamphlet from the National Institute on Aging regarding end-of-life decisions.
Documents regarding Power of Attorney rights in North Carolina.
Living Will documentation
Information on Living Wills and Power of Attorney rights in North Carolina