End of life care advocates decried the dearth of palliative medicine for terminally ill patients at a conference hosted by one of the Midwest’s largest nonprofit hospice providers this week.
“Gradual dying is treated as some sort of medical crisis, instead of a natural process in the life of human beings,” said Martha Twaddle, a palliative care physician. “We have this obsession with technology and the need to know more, as opposed to asking ourselves that very critical question: I could, but should I? Is it really beneficial to do more, to investigate more? Does it really bring value to this person and their family?”
The spring symposium was hosted by Barrington, Ill.-based JourneyCare, an organization in the process of merging with Horizon Hospice & Palliative Care and Midwest Palliative & Hospice CareCenter. Twaddle recently became the organization’s senior vice-president of Medical Excellence and Innovation.
“Why in heaven’s name do we wait until someone is mottled, no longer urinating, to talk about quality of life and goals of care?” she asked. “Why weren’t we having those conversations all along?”
Palliative medicine is specialized care for seriously ill patients that focuses on providing patients with relief from symptoms and stress of serious illness. Twaddle refers to it as “supportive care,” because the goal is symptom management, not cure.
Twaddle said advance health care planning and serious end of life conversations could help more patients and families avoid unwanted and costly treatments. Although nearly 80 percent of Americans say they believe it is important to plan for their end of life care, less than 25 percent do.
The Institute of Medicine is calling for more public education and engagement strategies to raise awareness about care options. However, palliative care suffers from an identity problem, as 70 percent of Americans describe themselves as “not at all knowledgeable” about it, according to a 2013 editorial published in The New England Journal of Medicine.
Twaddle highlighted a widely circulated 2010 study published in NEJM finding that among patients with metastatic non–small-cell lung cancer, early palliative care led to significant improvements in both quality of life and life expectancy.
“As compared with patients receiving standard care, patients receiving early palliative care had less aggressive care at the end of life but longer survival.” researchers write. “Given the trends toward aggressive and costly care near the end of life among patients with cancer, timely introduction of palliative care may serve to mitigate unnecessary and burdensome personal and societal costs.”
In its essence, proper palliative medicine harkens back to the values of ancient philosophers and doctors who viewed death as inevitable. Supportive care is vital, Twaddle said, because modern medical interventions are often aimed at eradicating disease and fighting death, which causes dying patients unnecessary suffering.
Twaddle quoted ancient philosopher Plato: If one is to cure the ear, one must first cure the head, and to cure the head, one must cure the body, but to cure the body, one must start by curing the soul— for if the part is to be well, the whole must be well.
“Plato, Aristotle and Hippocrates were part of allopathic medicine, the medicine most of us in the West are trained in. But it’s unusual if we go into the emergency room,” she said. “Most physicians don’t think about the whole being well.”