The weather in Connecticut was nice this weekend, and as autumn is rushing at us sooner than we want, I went looking for any excuse to avoid writing this letter to my patients and friends about my upcoming trip to Africa. Desperate for distraction, I spied sitting on top of my “procrastination pile” of unread books, Being Mortal, by the surgeon/writer Atul Gawande. Not exactly light reading for a summer’s day, but something that holds great interest to my wife and I as directors of “Palliative Care for Uganda, Inc.,” our non-profit that develops and sustains the medical specialty of palliative care in rural Uganda. And an opportunity to avoid writing this letter on a sunny day.
Although my wife Randi Diamond MD has been a professor of Palliative Medicine for some years now, it is a specialty that was until recently kept in the dark corner of the medical field. With early accusations of “Death Panels” and other misunderstandings of what palliative care doctors do, it is only in the past couple of years that the specialty is finally moving to the daylight of medicine, not only as a means to address many of the economic healthcare issues facing our country, but as a much needed cog in the complicated gears of patient care.
Simply put, palliative care is specialized medical care for people living with serious illness. It focuses on relief from the symptoms and stresses of a serious illness—whatever the diagnosis or prognosis. The goal is to improve quality of life for both the patient and the family. It is typically provided by a team that may consist of a palliative care doctor, nurse, social worker, and spiritual counselor who work together to provide medical treatments and emotional support to alleviate suffering and improve the quality of life of the patients and their loved ones. It is appropriate at any age and at any stage in a serious illness.
Further evidence of palliative care’s movement to the forefront are the increasingly common newspaper articles, the recent announcement that Medicare will reimburse doctors to have discussions with patients about their goals of care in chronic illness, and Dr. Gawande’s book sitting on the top of the NY Times Bestsellers list for the past 6 months.
In Being Mortal, Dr. Gawande addresses society’s challenge of our increasing ability to extend life, how we are now commonly faced with finding the difficult balance between quantity of life weighed against the quality of that life. That balance is what palliative medicine addresses for the individual when faced with a serious illness. Through medications, techniques and procedures, and most of all, discussions, palliative care providers help an individual and families make the personal decisions necessary but heretofore ignored.
Susan Block MD, the chair of the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute has said, “These conversations may cover end-of-life topics, but they’re not only about end-of-life. They really focus around how people want to live, and what their priorities are, what’s important to them in terms of living with a progressive, serious illness.”
Gawande’s book reports on a landmark study done by Dr. Block a few years ago. Half of the 151 lung cancer patients studied received usual care from their oncologist, while the other half received the same care but also were cared for by a palliative care specialist who addressed their physical symptoms such as pain or breathing difficulties, as well as having ongoing conversations with the patients on their hopes and fears. Dr. Gawande, who credits his own awakening to the benefits of involving palliative care specialists with his own patients to what he has learned from his palliative care colleagues, writes, “those who saw a palliative care specialist stopped chemotherapy sooner, experienced less suffering, and they lived 25% longer.”
Oddly, Uganda is in some ways ahead of the U.S. when it comes to palliative care. Largely because of the hindrances to providing timely and curative treatments for many illnesses that are adequately dealt with here, the Uganda Ministry of Health has been supportive of palliative care for many years now. The government there realizes that through the use of palliative care techniques, the reduction of suffering and an improved quality of life in these people can be the most important component of patient care.
But efforts by the Ugandan government have been focused almost entirely on the urban centers of the country where only 15% of the population lives and 70% of the healthcare providers of the country work. Randi and I, through Palliative Care for Uganda, focus efforts on the rural populations, where access to medical care of any type is difficult and so palliative care is crucial.
So whether I call it procrastination or “personal palliation”, my time reading Dr. Gawande’s book this past Sunday was more than relaxing. After reading, it became clear to me that my letter to you of my upcoming trip needed to help you understand why Randi and I go and do what we do.
“Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking.”
― Atul Gawande, Being Mortal: Medicine and What Matters in the End