Palliative care is not synonymous with hospice care. It is not the same as end-of-life care. And it is not a court-of-last-resort, what you get when you’ve exhausted all possible other treatments. Palliative care, as the Center for the Advancement of Palliative Care defines it, is “an extra layer of support,” something that is appropriate at “any stage in a serious illness.” Patients can have palliative care and life-prolonging treatments; they can, for instance, have chemotherapy or radiation therapy as treatment of cancer along with palliative care. What palliative care adds to conventional treatment is a whole team of clinicians (typically a doctor, nurse, and social worker, though it can include a chaplain or music therapist or other professional) whose focus is on managing symptoms (problems such as pain or nausea or depression), on advance care planning (on preparing for future medical care), and on providing psychosocial support to the patient with a life-limiting illness and his or her family.
Several studies have now shown that early palliative care improves quality of life and may even lengthen life. In advanced lung cancer, in which patients typically have a prognosis of at most a year, patients who received outpatient palliative care along with conventional cancer care were less depressed, had fewer physical symptoms, and actually lived longer than those who did not get palliative care. Similar findings have been reported for people with severe heart failure, severe chronic lung disease, and for people with multiple sclerosis. My clinical work suggests the same is true for older people with physical frailty or with cognitive frailty (dementia).
What’s remarkable is that palliative care also saves money. It leads to shorter hospital stays, fewer days spent in an intensive care unit, and fewer expensive tests, all without shortening life. But most patients with life-threatening illnesses do not receive palliative care services? Why not? The New England Journal article suggests that the way to improve the situation, and implicitly the reason for the current limitations, is by changing the payment system so that insurers would pay physicians for counseling about end of life care, by reforming the medical education system to increase palliative care training, and by improving access to palliative care by making consultation available at all hospitals. These are all reasonable strategies, but I don’t think they get to the heart of the problem.
The main barrier to extending the benefits of palliative care more widely is not economic—palliative care physicians have been successfully billing Medicare and other insurers for their services for years by transforming a “family meeting” into a “history and physical examination” through the inclusion of a few comments about the patient’s medical problem (the “history”) and appearance (“physical examination”) into the medical record. The main barrier to more widespread use of palliative care is psychological. Even though patients and their families who do avail themselves of palliative care generally like what they get, many patients refuse palliative care services because they do not want to face their mortality. At the same time, physicians do not want to propose palliative care because they think they are conceding defeat in the “fight against death.” And Congress does not want to legislate changes in Medicare and Medicaid that mandate broader use of palliative care because of the "death panel" legacy. The truth is that we are all mortal. The question is not whether we will die but what our journey will look like. Maybe it’s time to face this reality.
Thank you for this important and relevant column. My mother received excellent palliative care at the end of her life, when she decided not to continue the intensive treatment she was receiving. Her doc worked with her to find a way to withdraw active treatment and gracefully bow out of life. This is the same doc who recommended 'Five Wishes', a hugely helpful medical directive document she then used, and I have subsequently used and recommended to others (available online).
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