Discussing Your Aging Care and Death
Now that Medicare has begun to cover advanced care planning, chaotic life – and dying – decisions will hopefully diminish Discussing Your Care and Death
Patients often postpone such discussions because they’re afraid to face their own mortality. And doctors have had an incentive to defer these discussions because they weren’t compensated for their efforts. When the time came, this job often fell to another doctor, usually in the hospital, who hadn’t known the patient as long or as well, and at a time when the patient was likely less able to participate meaningfully in the conversation. This isn’t any different outside the hospital; fewer than a third of people have end-of-life conversations with their loved ones.
While visiting my in-laws in July, I sampled how the new Medicare eligibility for advanced care planning will hopefully change how we doctors approach the conversation. My husband and I had a series of discussions with his parents (at his mother’s request), and I learned a lot from the experience. It’s not that I don’t have these discussions with my patients; I have them all the time. But with my in-laws, I’m not restricted to a one-time office visit or to the chaos of end-of-life decision-making in the hospital. The conversation could unfold slowly and thoughtfully over time.
On the first day, we spent an hour talking about what they enjoy, what makes life worth living and what they fear. On the second day, we spoke for over an hour about how to keep them healthy and safe in their home and what daily activities they find challenging. In other words, we focused a lot on the living, not the dying. It wasn’t until the third day that we spoke at length about end-of-life care. And we’ve spoken more about all these topics (and others) since.
These were not easy conversations. More than three hours of discussion over three days was not long enough to get to everything. It was hard for them to open up – even with us, their loved ones – to reveal their insecurities. And it was hard for my in-laws, as for many older or sick patients, to concentrate for a long period of time.
There’s so much we’ve touched on but haven’t resolved. My mother-in-law, who is seven years older than my father-in-law, is very worried about the increasing load of caregiving. “Thank heavens that we have the support groups, because they are so helpful,” she told us. “But you get a picture painted of what’s going to happen. I hear women in the support group talking about their husbands. They dress their husbands from top to bottom. They wash them. Right now we really have it good.”
As we’ve told her before, being a wife doesn’t mean she has to be the primary caregiver. But it isn’t cheap to hire outside help; 90% of long-term care of the old or disabled is provided by unpaid caregivers like spouses, and it takes a heavy toll on their health, well-being and finances.
My father-in-law is worried about the progression of his Parkinson’s disease. “I see people in the Parkinson’s support group who are in steady decline, and all of a sudden they’re in a care center. And then you read about them in the obituary column,” he told us. My father-in law doesn’t want to go to a memory care center alone. He wants my mother-in-law to go with him. But the reality is that – unless she develops dementia – she won’t. And we still haven’t dealt with this head-on.
It’s important to know if a patient wants CPR, electric shocks, to be put on a ventilator, to be given a feeding tube or antibiotics, or other life support. But it’s also important to understand how someone wants to live; isn’t what happens to us in life more important than the distribution of our assets when we’re gone? So why is it so controversial to talk about these issues: our challenges with falling, taking medications, getting out of bed or a chair, walking, bathing, dressing, preparing meals, eating, toileting, housekeeping, managing our finances, shopping or driving?
Starting this month, Medicare is also testing an approach that wouldn’t force us to choose between treatment that might cure and hospice care, which seeks to alleviate pain and other end-of-life symptoms. We can choose both, an approach that has been shown to improve quality of life while reducing costs.
That said, this is the United States of America: how we live often boils down to how much money we – or in the case of our health, our insurance company – have to spend. At least now, there will be money to help us talk about how we want to live until we die.