Published in the January 2012 issue of Today’s Hospitalist
“We have to empathize with the family’s position.”
“It’s important to keep the lines of communication open.”
“Let’s give them more time.”
Yes, patience is a virtue. So is empathy. And when our patients make decisions we disagree with, we have to support their right to do things their way.
But what about a patient who can no longer speak for himself “and family members who either seem unrealistic about the effectiveness of medical treatment or actually refuse to honor his wishes? What about a doctor’s duty to relieve suffering and not provide treatment the patient wouldn’t want or that does him no good?
If those questions start you thinking, this article has done its job. But here are some practical ideas that can move the discussion in the direction of comfort care when you as a physician are convinced that further aggressive treatment is futile.
A united front
For a start, get all the support you can, and be sure that all the doctors seeing the patient are saying the same thing. A consultant who doesn’t like delivering bad news may give the family reason to think that a huge stroke will be cured by physical therapy or that the cancer will stop growing.
Get records from previous physicians if the illness is a long one. It’s not unusual to meet families who transfer patients from one hospital to another looking for doctors who will tell family members what they want to hear.
Whenever possible, present the family with facts, complete with CT scans and other studies that let them see the problem. Make it clear that the patient’s doctors know what is wrong and are not just speculating.
You’re having this discussion because the patient can’t participate, right? Is his altered mental status due to medications or to an irreversible condition like dementia or anoxic brain damage? If it’s the latter, bring in a neurologist you trust; the family can’t claim that he’s unqualified to talk about the prognosis.
And seek help from outside the medical profession. Chaplains usually are better at listening than at giving advice, but some may surprise you, particularly if they’ve seen similar cases and share your frustration.
The hospital “as well as larger hospitalist groups ” may have legal staff who can tell you when it’s safe to honor a patient’s advance directive instead of doing what the relatives want.
Legal and ethical help
Hospital ethics committees vary from “we’re just here to listen” groups to ones that try to decide what is right and make recommendations. The family may not want to hear what committee members have to say, but they can’t claim that you’re the only person questioning their decisions. You may want to ask if one of your partners would serve on that committee “because I guarantee that hospitalists see more cases like this than most of your consultants.
The family may try to “fire” you. You can ask a partner to take over “but can you be sure you won’t have to cover when you’re on night or weekend call? Try asking your consultants if one of them will take on that care.
If nobody can be persuaded, it is the job of the family and/or hospital to find another attending. But you must continue to provide care, no matter how disagreeable it gets, until one is found, or else face charges of abandonment. Sad but true.
Mary Haven Merkle, MD, a hospitalist group leader with Intercede Health in Houston, points out that it’s a good idea if you’re fired to call the patient’s primary care provider (or the specialist who referred the patient to you). This not only gives you a chance to get your side of the story heard, it may provide a pleasant surprise when you find out that the primary care doctor has had just as much trouble keeping the family happy as you.
In Texas and Virginia, you have the option to pursue a declaration of “futile care.” That process takes several days to complete and entails gathering independent second opinions and having the hospital’s ethics committee meet to decide on the case.
If care is determined to be futile, the family is given a fixed number of days to find another facility that will accept the patient in transfer. (That number of days is 10 in Texas, usually interpreted as 10 working days so the time is closer to two weeks.)
California law also allows termination of “ineffective” care that is in opposition to the physician’s conscience. But the phrasing of that law is confusing enough that most doctors will want an attorney involved in the process.
Understanding their point of view
You reached your decision by examining the record and listening to colleagues whose judgment you trust. Family members do the same, but the people they listen to may have neither the knowledge nor the objectivity they need to make an informed decision.
In such a case, ask where they’re getting their advice. You may be able to gently point out that the “advisor” is actually less qualified to judge the patient’s situation than those who have spent time at the bedside, and that stories about a distant relative who magically recovered from a “coma” have little relevance to the tumor or cardiac arrest that caused your patient’s brain damage.
Remember that most families are biased only by wishful thinking and really want what’s best for the patient. But be aware that sometimes things are different. The social worker or case manager may be able to point out that the family controls Grandpa’s finances only until the will is read, or that they have been paying their own rent with his disability check. Letting them know in a nonjudgmental way that you’re aware of these facts, and expressing sympathy for their coming loss may help nudge them toward accepting the inevitable.
Why we’re here
This is never an easy situation, even when you and the family see eye-to-eye on treatment issues. It’s even harder when you have to tell people that their optimism is unfounded, or to start proceedings against someone who thinks she is doing the “right” thing.
But we went through all that medical training to help our patients, not to satisfy someone else’s emotional or financial needs. Keep listening and explaining, and try to do what’s right. In the end you’ll at least know you tried to stick to your principles “and tried to advocate for your patient.
Stella Fitzgibbons, MD, has been a hospitalist since 2002 and has worked at numerous hospitals in the Houston area.