For more than half her life, Meghan MacNamara has battled multiple sclerosis, a degenerative disease that can lead to respiratory and circulatory problems, and shorten her life span.
Yet the Lancaster resident and college professor says none of her doctors have started a conversation about her eventual death or how she would want to be treated if her health took a serious turn for the worse.
“The medical profession will never admit that MS will kill you. You die from complications,” says MacNamara. “It’s difficult because I do present somewhat higher energy, motivated. I don’t think of them as obligated to bring up death.”
MacNamara has a living will that designates her husband as her decision-maker if she becomes unable to act as her own advocate. She also has spoken to her parents about avoiding any heroic measures and has shared her advance directive — a legal form outlining quality-of-life expectations and treatment choices.
When she introduced the topic of voluntary euthanasia with her primary care doctor, he launched into a supportive, “existential” conversation without flinching in response to her ideal plan for death.
But MacNamara worries about patients who aren’t as informed about their choices — or can’t imagine all the scenarios that come with an unexpected diagnosis or trauma.
Earlier this year, the Centers for Medicare and Medicaid Services began reimbursing doctors for time spent on end-of-life counseling for seniors — a move insurers likely will follow for patients of all ages. But few physicians are making advance care planning part of routine treatment.
A survey conducted in April found just 29 percent of American doctors have had formal training in assessing patients’ end-of-life wishes. Only 21 percent of those who regularly treat patients with terminal diagnoses —those who likely will die within a year — have daily conversations about advance care planning.
While 48 percent of physicians in the “Conversation Stopper” poll said they’d talk about end-of-life issues with their own doctors, 51 percent admitted they were “uncomfortable” initiating a similar talk with their patients.
Two-thirds (66 percent) of the 736 primary caregivers, oncologists, pulmonologists and cardiologists who took part in the study said they didn’t have time for such talks, says pollster Tresa Undem.
“Part of it has been that the medical field has sometimes viewed death as a failure,” says Dr. Leon Kraybill, chief of geriatrics for Lancaster General Health. “I haven’t met any patients who lived forever yet. Death is a part of life. We can push that back, but there comes a time when we can’t do any more. We need to be more comfortable with that.”
The Kaiser Family Foundation found last year that 9 out of 10 Americans believe doctors should have these discussions with their patients. Only 17 percent had tackled the topics with a health care provider, though the percentage climbed to 27 percent among people 65 or older.
For the four children of Kit Frederick, 78, talking about death wasn’t a choice.
Sisters Jackie Brandsema and Liz Huyett have power of attorney to make health and financial decisions for their mom, a Moravian Manor resident who suffers from chronic obstructive pulmonary disease, vascular issues and dementia.
Their mother refused to use oxygen, smoked when she did and hid the regularity of dangerous falls from her family. Getting the right paperwork in order allowed the daughters to consult with their mother and her doctors about future needs.
Frederick’s living will, a do-not-resuscitate form and her Physician’s Orders for Life-Sustaining Treatment all indicate she no longer wants invasive measures.
After seven years, her daughters faced what was most likely their toughest decision — one that needed to reflect their mother’s choices, even if those weren’t the options other family members would choose for her.
Instead of approving an amputation that might keep her alive — if she survives the surgery itself — the sisters likely will allow their mother to die from an ongoing infection. They expect she would not be able to complete the therapy required to recover from surgery and would be unlikely to regain much quality of life.
“It’s not cut and dry anymore,” says Brandsema. “The last thing we would have wanted was for the ultimate decision to be made without the health (power of attorney) and then have a disagreement.”
The key to talking about death, says Huyett, is having a family member or friend involved who is not afraid to ask questions or look for options. Not everyone is fortunate enough to have a navigator.
“A lot of families have to rely on doctors to be the helper or pushers sometimes,” says Huyett, who works as director of residency planning at Moravian. “Many of the people I’ve met with, a lot of times they don’t know who to turn to. They don’t know what to expect.”
End-of-life conversations can start with generalities, such as “I hope to die quickly and without pain.” Some legal forms allow or encourage patients to dictate specifics, such as wanting cardiopulmonary resuscitation performed for up to an hour, or dying in the presence of others.
Specific conditions and ongoing treatments can require a medical professional who is well-versed in long-term possibilities. Such was the case for a Lititz woman whose father had been fitted previously with a pacemaker and an internal defibrillator.
When it was clear he was in the final stages of his life, his daughter sought out a doctor to discuss whether either or both devices should be turned off.
Kraybill reminds patients that documents generated from well-thought-out conversations can change.
Though LGH does not require doctors to receive training on end-of-life discussions, Kraybill says most young doctors have some education in it. The hospital also has eight employees trained in Gunderson Health’s Respecting Choices, one of the most widely recognized programs in the nation.
Kraybill says there are no magic words needed between doctor and patients beyond those conveyed with gentle honesty. He has seen the “disastrous” consequences that can follow a failure to discuss end-of-life care.
LGH recently held several seminars intended to help patients of all ages better understand the advantages and the realities of talking about death early and often.
MacNamara attended the first Death Cafe held in Lancaster, a cookies-and-conversation event planned by the Pennsylvania Link to Aging and Disability Resources.
After advocating for her mom during ovarian cancer and a friend during a breast cancer diagnosis, MacNamara is comfortable fighting for herself.
She has scheduled appointments with her primary care doctor to talk specifically about her end-of-life plans. She makes sure every doctor has charted the existence of her paperwork.
She hopes others, especially the elderly and those with chronic conditions, find themselves getting more guidance from physicians they trust.
“I think that is exponentially more difficult than (having the conversation with) someone with acute or short-term needs,” she says. “They get all the attention because everyone is focused on fixing them.”