Imagine your widowed father is 96 and living alone in a distant city. He’s got severe heart disease and mild dementia but is still competent to make his own choices. And is decision is: He refuses to move to a care facility but will not accept any supports and services that could help him remain safely at home.
He won’t let anyone help him clean up his house. He won’t allow the Meals on Wheels delivery person to come into his home. Even with medical treatment, it takes him hours to get dressed and he can barely walk across the room. But, dammit, he can manage just fine on his own.
How can doctors help patients who are no longer able to care for themselves? How can they engage patients and their families when someone is mentally competent but making what seem to be bad choices.
A couple of weeks ago, the prestigious New England Journal of Medicine published a remarkable—and very important– article. Written by three doctors, it provides a valuable framework for physicians to think about these common situations and suggests four practical ways they can respond.
Not incidentally, much of their advice also applies to the adult children of frail elders.
To my mind, the article– by Alexander K. Smith of the University of California San Francisco medical school, Bernard Lo of the San Francisco veterans medical center, and Louise Aronson of the Greenwell Foundation of Bioethics in New York– doesn’t go far enough.
It neglects some important payment and physician culture issues that discourage docs from helping these challenging patients. Nonetheless, it is a very important beginning of a conversation that doctors must have as more of their patients face these tough issues.
The authors make four suggestions for doctors (and adult children):
Don’t focus too much on safety: For many frail elders, safety is not their primary goal. They may be willing to trade off risks (of, say, a fall) for independence. Think about reducing harm rather than eliminating all risk. If, for instance, an apartment is filled with trash, think about reducing the clutter, not necessarily making the home perfectly clean.
Use persuasion: Many physicians are most comfortable giving instructions. But with these patients, gentle persuasion may be more effective. Build trust. Don’t tell a frail elder she must let someone in to help. Ask instead, “What concerns you about letting someone come into your home to help?”
Make home visits: It’s a good way to build the patient’s trust and perhaps begin to allow other members of a care team or community volunteers to enter the home as well.
Plan for the worst case: Work with the elder and her family on advance care planning.
Unfortunately, as I read the piece, I kept thinking about the response of many physicians: I don’t have time for these conversations, much less make a house call. Who is going to pay me for this? I’m not a social worker.
Sadly, until those attitudes are changed, all this good advice will fall on deaf ears.
At their core, Smith, Lo, and Aronson are really talking about respecting frail elders. It is as much about attitude as practical advice. Approaching that 96-year-old with respect for his wishes and goals is the necessary first step. The authors’ suggestions naturally follow from that.
Still, the article provides wise counsel. The authors are taking an important step that may help convince doctors to provide the frail elderly with what they need the most—true person-centered care rather than complicated, disruptive, and often-futile medical treatment.
It’s, certainly, not an easy problem, and I agree that there’s been too heavy a focus on safety. In fact, some of the recent publicity about the risks in a chain of “memory care” facilities shows how very understaffed and unsafe they may be. I’m thinking especially of the Frontline piece a year of so ago of the Emeritus facilities. Very scary stuff.
This is a very touchy subject. What I find is letting the loved one express what they enjoy about being independent in their mature yesrs and living alone. I let them express the feelings first. They want to know someone is listening; then build from there.