Research Priorities in Subspecialty Palliative Care: Policy Initiatives

Abstract

Palliative care demonstrably improves quality of life for the seriously ill in a manner that averts preventable health crises and their associated costs. Because of these outcomes, palliative care is now broadening its reach beyond hospitals, and hospice care for those near death, to patients and their families living in the community with chronic multimorbidities that have uncertain or long expected survival. In this article, we address research needed to enable policies supportive of palliative care access and quality, including changes in regulatory, accreditation, financing, and training approaches in the purview of policy makers. Mr. K. is an 86-year-old male with multimorbidities, including severe chronic obstructive pulmonary disease, congestive heart failure, peripheral vascular disease, and atrial fibrillation requiring anticoagulation therapy. He fell in his mobile home and was unable to reach the telephone to call for help. Six hours later, his neighbor found him lying on the bedroom floor in pain and confused, and called 911. On examination, he was found to have a cold blue foot complicated by a large hematoma. The vascular surgery service was consulted to evaluate Mr. K. for revascularization or amputation. Although Mr. K. had several risk factors complicating his candidacy for general anesthesia, the team thought the benefits of surgery would outweigh the risks. Mr. K's daughter agreed to surgery telling her father "the doctors know best." Mr. K. replied "I just want to be out of pain." Six months later, Mr. K. remains in a skilled nursing facility due to post-op complications, including pneumonia, worsened confusion, and the inability to recover to enough function to live safely at home. He now suffers from depression, cognitive deficits, and social isolation. His daughter has had to take on a second job because she is struggling to pay for his continued long-term care, which costs $6000 per month. Money she had saved for her own retirement and her daughter's college tuition is already gone. In retrospect, she realizes the surgical team did not discuss the possibility of his survival with chronic debility and long-term functional dependency, nor the fact that Medicare would not pay for the care he now requires.

Keywords: chronic conditions; critical care; goals of care; palliative care research; subspecialty palliative care.