End-of-life counseling means ‘survival panels’
One recent evening, a resident physician asked me why I am a palliative-care physician. Despite the late hour, I explained the serendipitous circumstances of volunteering at our community hospice, where I noticed that my patients with lung disease and heart disease did far better under hospice home care than my patients who chose to be hospitalized for every flare of their illness. Some hospice patients did so well that they graduated from the program.
Eighty percent of all deaths in the United States follow a predictable decline, whether it is due to cancer, lung disease, kidney disease, or heart disease.
Despite the pattern, we continue to treat each dying patient as if the progression is a surprise, forgetting that our role as doctors is not to prevent death but to prevent premature death, guide our patients, and alleviate suffering. One of the most important parts of our conversation with the patient is listening to goals they have set for themselves, both medically and otherwise.
The singular act of setting a goal can have survival benefit, especially in the outpatient setting. Setting goals creates a therapeutic alliance for the patients, families, and the physicians. Setting goals created a survival benefit for my patient who wanted to show his horses at the Iowa State Fair “one more time.” He had cancer, and, in the opinion of most, was going to need dialysis soon. He drank sauerkraut juice at least once a week and took no medications for his cancer. He won first place that year, thanks to a concerted effort among the family, the patient, and the doctor.
For a second patient dear to my heart, who was diagnosed with a mass in her pancreas about a year before her 90th birthday, setting a goal had similar survival benefits. She wanted nothing to do with chemotherapy or radiation — not even a biopsy. But she did want to attend her 90th birthday party.
She enrolled in hospice and loved the attention, including the scrapbook that a volunteer did with her. And she was queen of her 90th birthday party, doing so well that her three daughters looked at me for a new goal when the party was over.
Finally, I saw a patient with advanced cancer who wanted to meet her as-yet-unborn grandson: She developed bilateral pneumonia and could not breathe on her own. Her goal of meeting her grandchild became the driving force for her care during the six months remaining in her daughter’s pregnancy. She moved to the intensive-care unit, was placed on antibiotics and a ventilator, and did well enough to get to a nursing home, where she met her grandson, improving enough to help with childcare before she died.
The data are not merely anecdotal. An oncologist once said to me, “If palliative care were a drug, it would be fast-tracked by now,” referring to the Food and Drug Administration’s expedited review of drugs that meet an unmet need. In a recent New England Journal of Medicine article, palliative care was found to extend life by about two months in patients with lung cancer and to reduce depression and increase the quality of life. Hospice interventions have also been shown to extend life in cases of heart failure and some cancers. We call this the “hospice paradox.”
These profound discussions between a doctor and a patient are as old as our profession. What is new is the vastness of the choices. Our patients need our guidance and assistance in navigating through medical choices to achieve an outcome that is consistent with their goals. Palliative care promotes shared and informed decision making, superb control of symptoms including the grief of the patient, the family, and the health-care providers.
Ann Broderick, M.D. M.S., is thedirector of palliative care at theUI Hospitals and Clinics.
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