The conversation about dying is not enough

If you are a woman in your late 40s, like me, chances are that you’re responsible for caring for an elder adult — a parent, an aunt or uncle, a family friend. When my father died of non-Hodgkin lymphoma in a hospice facility in 2005, I was woefully unprepared for the challenges of caring for him, the anxiety, the sleeplessness, the bone-numbing grief, the disruption of my career.

For decades, we’ve treated caring for an elder as though it’s merely the unique challenge of adult children. That’s changing as a host of factors have made elder caregiving a national issue. The result is that, finally, we’re having a public conversation about how we deliver end-of-life care. Yet, what we’re saying won’t solve the well-documented crises the country faces over the next 30 years.

As with Atul Gawande’s bestselling book, “Being Mortal,” the message is that we can best address these issues by talking. If we just ask seniors what they want as their health and abilities decline, we’re told, they, their doctors — and we — will be better prepared for what lies ahead.

But what lies ahead for the country as the population ages will require more than personal responsibility and conversation.

Thanks to a new Affordable Care Act inclusion, doctors are now paid for talking with elders about their end-of-life plans. Yet, it requires that patients initiate this conversation, something many are unprepared to do. And so a majority of American elders spend many of their last days hospitalized, receiving medications and treatments that are painful, isolating and will not cure their impending death.

No matter how strongly we are implored to have the conversation, however, those likely to miss it make up a segment of the population that needs resources and care the most: minorities, the uninsured and undocumented, those on the lower socioeconomic rungs of our country’s class ladder.

What’s needed, and fast, are systemic changes — social, medical and legislative — that address disparity in end-of-life care. But systemic change will require an unprecedented economic, legal and cultural shift.

In an article in the Journal of the American Medical Association, Daniel Shalev tells the story of how he first met a terminal patient when he was in his third year of medical school. “Prior to Ms. Nichols,” Shalev writes, “I had spent my time caring for patients with curable, acute conditions like pneumonia or colitis.” Attending to Ms. Nichols taught Shalev some important lessons: Good care doesn’t always include prescribing more treatments or medications; and good care can be as simple as making sure a patient is comfortable.

Medical training doesn’t often enough give new doctors the skills elders need: how to deliver terminal diagnoses; and how to not see the end of treatment as failure. Shalev doesn’t prescribe a way to rectify this inadequate exposure and experience. But I have one. By matching two needs — the lack of elder care training for medical students, and an inadequate number of hospice volunteers, medical schools could better prepare new doctors. Enrolling medical students in hospice volunteer training programs, which are free and already exist in every corner of the country, would go a long way in preparing the medical field for the coming elder population.

Inadequate elder care for any of us means health care costs and inefficiencies that will affect us all. Finding creative solutions for the elder care crisis won’t be easy, but we really have no other choice.

Ann Neumann, the author of “The Good Death: An Exploration of Dying in America,” (Beacon Press, 2016) will talk about her book Tuesday at 7:30 p.m. at the Booksmith, 1644 Haight St., San Francisco.