Supportive Care: aka Palliative Care: aka not hospice
By Dr. Juliette Kalweit
“I met this crazy patient named Frank at the hospital the other day.” (Those are his words, that he told me to use). Actually Frank was a very good prototype of a palliative care patient.
First of all, I should clarify what Palliative Care means. The World Health Organization basically defines it “as an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, psychosocial and spiritual.”
How do we do this with people like Frank, you ask? By communicating. The words people use are powerful and speak to what palliative care is all about: quality of life. This involves talking and listening and takes time. We pull up chairs and get face-to-face with the patient. As Dr. Ira Byock put in his book, The Best Care Possible, “it is within authentic relationships with patients that the personal rewards of our profession are found.” Talking with patients and listening to their stories is fascinating and a privilege: the couple that met in WW II and have been married 68 years; the girl orphaned at the age of four and raised by her aunt in Canada; the alcoholic dying of liver disease who’d been drinking since the age of 15 without his parent’s knowledge. The stories are mesmerizing. And vital to who that patient is and why they feel the way they do. “What do you understand about what is going on?” And “what are you hoping for?” These two questions sum up what we need to know.
Goals of care are often not asked. “The only mistake clinicians seem to fear is doing too little.”( Dr. Atul Gawande: Being Mortal) Physicians continue to offer all-out treatment, but they are often unwilling or unable to stop. “There is nothing more we can do…” And yet there is always something to do for comfort. It can be as simple as controlling a patient’s nausea and pain so they can go play Bingo with their neighbors. For Frank, it means managing his symptoms so he can go on with treatment: supporting his goals.
Finally, we review advance directives. Mortality remains at 100 percent worldwide; we all die. Many patients are clear that if they die, they do not want to be brought back. It is simply a matter of asking. And listening. Communication: the essence of palliative or supportive care. It is done by a multidisciplinary team involving holistic medicine, chaplains, social workers, pharmacists, nurses, nurse practitioners and physicians. The landmark article by Dr. J Temel at Massachusetts General Hospital in 2010 showed survival actually increased when palliative care was added. The study has been repeated three times; each time showing the increase in survival.
Frank is going to be okay. His goals are clear and his symptoms well managed. A palliative care success story.