Note to physicians: Talk to patients about end-of-life
Note to physicians: Talk to patients about end-of-life
Innovative program offers legal advice
In her practice as a gynecologic oncologist, Kerry Rodabaugh, MD, assistant professor of medicine at the University of Missouri Health Sciences Center in Columbia, often is faced with a situation her training didn’t prepare her for. For many of her terminally ill cancer patients, their concern is not what will happen to them as they face their disease, but what will happen to their children after they are gone.
"I take care of a lot of patients who happen to be single parents, and I didn’t know how to help them with their children," she says. "And, that was one of the most distressing things for them as they went through their disease process, was who would take care of their children?"
Last year, Rodabaugh conducted a small study to find out how well the custody arrangements her patients had made held up after their deaths.1
What she found was even more distressing.
In 40% of the cases, custody of the children was granted to individuals to whom the deceased parents were explicitly opposed to being made responsible for the children, she says. "We identified several children — though our study was very, very small — who did not want to go with the person to whom custody was assigned," says Rodabaugh. "The situation even raised a suicidal crisis in one child who was sent to live with someone she did not know."
Half of the children also were unaware at the time of their mothers’ deaths of the custody plans that had been made for them, she adds. "That was one of the problems that we identified. Sometimes, parents will make plans for their children but not necessarily share it with the children. I don’t want to be paternalistic, but I don’t really believe that’s the best way."
Patients get legal advise
In many cases, the problem was that the women simply lacked appropriate legal advice, and that is something the hospital is trying to remedy. Since the study, Rodabaugh and hospital social workers have begun a pilot program in cooperation with the University of Missouri Law School to help terminally ill mothers get legal advice on custody planning.
"In some of the cases, they had made custody arrangements, but when they were challenged in court, they simply didn’t hold up," Rodabaugh says. "Some of the children went through custody battles between fathers and stepfathers, which is certainly not good for the child, particularly so soon after the death of their mother."
In addition, Rodabaugh feels, it’s important to raise the issue of custody planning earlier in a parent’s illness, so that they are not faced with this problem right at the time they are trying to deal with their own death. "Some of it is that this is one of the last things that patients will address because when people start working on a custody plan, my sense is, they feel they have given up," she says. "Women do not want to give up on their own diseases because they feel like they have failed their children if they give up."
Rodabaugh recommends trying to raise the issue with parents earlier in the disease process, perhaps addressing it as a routine part of planning "just in case" something were to happen to the patient, she says.
The goal of her study, she adds, was to raise awareness in the clinical community that custody issues need to be addressed. "It is something that people do not think of first thing; they are more interested in what the options are for treatment of the disease, whether you have pain adequately controlled — those kinds of things," she explains. "But I am trying to get this a little more into the spotlight so that people address this issue also. I really think we can improve quality of families’ lives if we can settle these issues earlier on in the disease process."
Honest communication may be a problem
Before such planning can be addressed, however, the patient must have a realistic picture of what his or her disease stage actually is. This may be a problem, as a recent survey of physicians with patients at five hospices in the Chicago area indicated that physicians may frequently give patients misleading information about their prognoses.
In a written survey of the physicians of 326 cancer patients and recently published in the Annals of Internal Medicine,2 the physicians indicated that they would either provide no survival estimate or a deliberately incorrect survival estimate 77% of the time.
When asked whether they would provide an estimate of survival to patients who request it, the physicians responded that they would provide a frank estimate only 37% of the time; they would refuse to provide an estimate 22.7% of the time; and they would provide an estimate that was either overly optimistic or pessimistic 40% of the time. Of that 40%, most of the estimates would be "optimistically discrepant," meaning that physicians would tell the patient an estimate longer than what they themselves believed to be true.
"Everyone wants the best for their patients and hopes that their patients can live as long as they’d like to," notes Elizabeth Lamont, MD, assistant professor of medicine at the University of Chicago Medical Center, and co-author of the article. "But in our effort to make them feel hopeful about that, we may rob them of the opportunity to get what they need to get done before they die, whether that is getting a custody arrangement in place, or having children who live out of state fly in to say goodbye. You just worry about lost opportunities."
In an attempt to give the patients hope, the overly optimistic physicians may in fact be doing their patients a real disservice. Prior studies have shown that many physicians’ estimates of patient survival times are overly optimistic anyway, without meaning to be Lamont says.
"The problem is that there is a baseline overestimate that doctors aren’t aware of, then you add on to it, the overestimate that they are aware of," she notes. "The patient ends up being twice removed from information about their survival because there is the subconscious error and conscious error."
In the case of physicians who do not want to give estimates at all, a key problem may be that physicians themselves do not feel able to accurately predict a patient’s survival. "One thing we found was that physicians who were very underconfident about the predictions they had made, they were more likely to say they would say nothing," she says.
One solution, Lamont believes, is to shift the focus from prolonging life to ensuring the quality of the patient’s life, which means helping them plan to have a "good death," she believes. Although some physicians do not feel comfortable with survival estimates, she feels physicians should at least talk to the patient about survival rates among people with the same illness and similar characteristics.
"You may want to teach them about survival statistics. One thing to do would be to say, It is very hard to predict for the individual, but we know that other patients who have the same disease that you have, that has the same extent, have a median survival of X number of months, and you’ve had this for six months, that means lots of people like you will have died in the next two months," she says.
Even though it may feel that the physician is "discouraging" the patient, part of the physician’s responsibility to see that he or she is aware of what their true condition is and can make arrangements that they want to, and expect to be able to make.
"It’s not really better to tell them they have three months, when it may be more like three weeks," she says. "I have talked to families after patients die and they would say, Gosh, you know, we just didn’t see it coming,’ and I think, how could it be that you didn’t see it coming? But when you don’t have these kinds of frank discussions. You can see how it might happen."
References
1. Willis L, Peck M, Sims S, et al. Custody planning. A retrospective review of oncology patients who were single parents. J Pain Sympt Manag 2001; 21:380-384.
2. Lamont EB, Christakis NA. Prognostic disclosure to patients with cancer near the end of life. Ann Intern Med 2001; 134:1,096-1,105.
Sources
• Elizabeth Lamont, MC 2007, 5841 S. Maryland Ave., Chicago, IL 60637.
• Kerry J. Rodabaugh, 704 Ellis Fischel Cancer Center, Columbia, MO 65211.
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