In a recent New York Times article, Dr. Mikkael A. Sekeres, a cancer specialist. told of his first meeting with a 97 year-old patient. The elderly man had recently moved into an assisted living facility in Cleveland in order to be near his son and daughter-in-law, who had come with him to the appointment. He was being seen for abnormal blood counts requiring periodic transfusions. As of yet his condition hadn’t been diagnosed.
“I don’t know if I’m looking forward to being 98,” the man confided. When Dr. Sekeres asked him to explain, he said, “I don’t want to end up . . . you know, blotto,” simultaneously leaning to the side and opening his mouth to imitate advanced senescence. Dr. Sekeres suspected that the man’s blood abnormalities were the result of a cancer that kept the bone marrow from producing enough healthy blood cells. The diagnosis could be confirmed by a bone marrow biopsy.
Did it make sense to do the procedure, though? The condition didn’t seem to be worsening, and treatment wouldn’t cure it. Plus, the man’s fear of becoming “blotto” didn’t stem just from his illness. He thought he might end up worse off “Because of my medical condition, or whatever you’re going to recommend I treat it with.” Medical interventions don’t always make things better. As the saying goes, “sometimes the cure is worse than the disease.” The older and more decrepit we get, the more this is likely to be the case.
Dr. Sekeres brought up the biopsy, but the man immediately rejected the idea. Dr. Sekeres indicated that it didn’t have to be done; the procedure would be painful and wouldn’t offer the man any foreseeable benefit. Hearing his father’s comment and the doctor’s reply, the man’s son quickly assented. Too often, children question their elderly parents’ decisions, often to the point of treating the parent like a child who isn’t capable of making choices. Certainly there are situations where the parent isn’t capable or hasn’t thought through the implications of a decision. However, Sederes’ patient clearly had his wits about him and had thought about what sort of medical care he wanted. Fortunately, the son knew his father well enough to take his dissent seriously.
During the past few years I’ve been in the son’s position; I’ve taken my mom to doctor’s appointments during which treatment options were discussed. Most recently, it was an appointment at a gastroenterology clinic to review her difficulties with swallowing. She has had a variety of treatments in the past, resulting in no more than slight, temporary improvement. She has to puree her food and even then isn’t getting enough calories to maintain her weight. During the appointment, the physician’s assistant reviewed treatment options, recommending against some but leaving others as possibilities. None is likely to make a significant difference. A feeding tube will probably be necessary at some point, but there are no clear indicators as to when it would be best to take that step. When the PA paused, mom turned to me and asked, “What do you think I should do?”
I could have told her what I thought was best, but, if I did and she deferred to me, it would be my decision, not hers. Since she would have to live with whatever was decided, it was important for her to think about her preferences. So rather than offering a firm opinion, I mostly just highlighted what I thought were the most important points the PA had made. I mentioned the risks of having her throat muscles stretched again. The PA had said she might have an infection in her throat that was adding to her difficulties; it would be possible to treat any possible infection without further testing. This might or might not help, but had little downside, so mom agreed to take an antibiotic for this purpose. We discussed the pros and cons of a feeding tube. Having one would be especially advisable if mom lost more weight; the PA suggested 120 pounds as the weight below which a feeding tube would definitely be needed. Mom agreed. The plan came together a little at a time. Mom didn’t want to make the decision by herself, but she did want a say in the decision, and that’s what happened.
I realize that not all elderly patients have either a logical, well-thought out position from which to make health care decisions (like Dr. Sedekes’ patient) or the ability to collaborate with family members and health care professionals to make such decisions (like my mom). Yet an awfully lot do, if given the chance. It certainly works best if sons, daughters, and other family members provide that chance rather than diminishing the elderly patient by hijacking the discussion of options. Many children don’t even know what quality of life the parent is (and is not) willing to sacrifice in order to increase longevity. Those of us with elderly parents need to listen and avoid making assumptions; parents whose adult children are helping them get health care need to communicate their wishes as clearly as they can. Everyone facing medical problems during the last few decades of life should be heard and have their wishes treated with respect and caring.