After finishing medical school and my residency in internal medicine, I undertook an additional year of training in a field called palliative care. Patients who notice my background sometimes ask me what exactly palliative care means. It’s really a simple concept. Palliative care is helping people with a serious illness have the best possible quality of life. It’s enabling sick patients to make the most of the time they have left to live. The term palliative care comes from the latin word palliare which means to cloak or support.
Helping people have the best quality of life possible is a simple idea, but how do you do it? I will address that point, but first I want to distinguish palliative care from hospice since the two terms are often understandably confused. Hospice provides care for terminally ill patients and their families. Hospice care is often provided in a person’s home, but it can also be utilized in a facility such as a nursing home or assisted living. Hospice incorporates a team of healthcare professionals, from doctors and nurses, to social workers, health aids, and chaplains. It is a benefit under Medicare and many insurance plans. Palliative care is a broad concept that encompasses hospice. At some point, a person with an illness will move closer to death and hospice may helpful for allowing them to have the best possible quality of life. But helping a person with an illness feel their best doesn’t have to wait until he or she is dying. It can start as soon as they are diagnosed and while they are receiving treatment to cure their illness or prolong their life.
Palliative care’s roots can be traced to Dame Cecily Saunders’ work in Great Britain in the 1960s developing the modern hospice movement. In the 1970s, an oncologist named Dr. Balfour Mount in Canada incorporated the principles of hospice into care even before people approached the end of life. He coined the term palliative care. Over time, more and more hospitals have developed palliative care teams and recently formal specialized training programs in palliative care have been developed.
So how do we provide palliative care? What are the ways that we can enable a person with a serious illness to enjoy the best possible quality of life? I’m going to discuss three essential components of palliative care: identifying goals of care, controlling symptoms and caring for the whole person.
Quite often when caring for somebody with an illness the goal simply becomes treating the illness. So if somebody has lung cancer the goal is to eliminate or slow down the cancer. Or if somebody has congestive heart failure, the goal is to have the heart pump effectively for as long as possible. But why do we treat the illness in the first place? Treating the illness is a means to helping the person be their best and make the most of their life. Treating the illness should not be the primary goal.
I want to provide some examples of identifying goals of care. The first centers upon a person I’ll call Mary. Rather than being an exact story of a particular case, Mary’s tale is a composite of some situations I’ve encountered over the years of my training and practice. Mary was a 88-year-old frail woman with many different chronic illnesses. She developed severe pneumonia for which she was hospitalized. In the hospital, she became very weak, so that she had to discharged from the hospital to a rehabilitation facility to try to regain some strength. Soon I received a note from the hospital stating that she had been admitted again for another episode of pneumonia. During this hospitalization, she suffered a stroke. When I went to visit her in the hospital, she was scheduled to have a feeding tube inserted since the stroke had left her with difficulty swallowing. I sat with her family and we discussed what was right for Mary. We first exchanged information. I asked them their understanding of what was going on with her body. I then explained that the feeding tube would not prevent her aspirating her saliva. In addition, the stroke had left her confused and if a feeding tube was inserted, Mary would likely try to pull it out. She might have to be restrained or receive heavy sedative medications to keep the feeding tube in. Since Mary was too confused to make any decisions, I asked her family, what would have been her goals of care in this situation. After reflecting upon this, they felt certain she would not have wanted the tube inserted. She would have most valued her quality of life. So we did not have the tube inserted and she was sent home with the support of hospice. When I received a note from Mary’s daughter later telling me she had died, they were grateful they had not put her through another procedure and that she had been able to spend her final days in the comfort and familiarity of home rather than at the hospital.
Another example of identifying goals of care is Amy Berman. She is a nurse who has become a spokesperson for palliative care. When she was diagnosed with advanced, incurable breast cancer she was first advised to have a mascectomy and intensive chemotherapy and radiation. Getting a second opinion from a different oncologist and a palliative care physician, she decided on a different course. In order to be able to feel well enough to enjoy the time she had left to live, she decided on a gentler, less toxic chemotherapy regimen and high quality symptom control. My patient Mary and Amy Berman benefited because instead of just going with the flow, there was thought given to what their goals of care were.
Another task of palliative care, another way that we seek to enable people have the best possible quality of life, is through controlling burdensome symptoms. Sometimes in treating illness, especially cancer, burdensome symptoms get neglected. So the cancer may be shrinking, but the person’s pain may be excruciating. Palliative care doctors and nurses work to be very good at treating pain and other symptoms. They also seek to train other health care providers to do this effectively. Some of the common symptoms we treat are pain, nausea, shortness of breath, fatigue, depression, anxiety, delirium, and constipation. There is an art and science to treating each of these symptoms well and doing so can make a tremendous difference to a patient and their loved ones.
The last component of palliative care is treating the whole person. I’d like to ask you to imagine for a moment that you were facing imminent death. What things would allow you to best bear this experience? What could make it as positive and meaningful as possible? In a national survey published in the Journal of the American Medical Association, 340 seriously ill patients were asked to rank 9 attributes of quality of life at the end of their lives. The patients ranked “peace with God” just below “freedom from pain” as the most important attribute of a good death.
This points to the fact that illness is not just something that happens to our bodies. It affects the way we think about ourselves and make sense of the world. It affects our finances. It affects our relationships. Cicelly Saunders’ term for the many ways that an illness affects a person is called “total pain.” Palliative care seeks to provide holistic care by attending to the multiple ways that illness affects a person.
To do this, palliative care uses a team approach. A typical palliative care team includes a physician, nurse, social worker, and a chaplain. They each have skills to address the different aspects of person’s experience of illness.
So what is palliative care? Palliative care is the goal of helping people live as well as possible for as long as possible. It does so by aiding individuals in identifying their goals of care, controlling burdensome symptoms, and caring for the whole person.
Although most of my work as a doctor is in the field of internal medicine, I still have the privilege of practicing from time to time at Hospice Austin’s Christopher House. A gift to the Austin community, Christopher House serves people enrolled in hospice whose symptoms are too severe to be controlled at home. It seeks to honor this sacred time in individuals’ lives by providing a home-like environment for patients and their families.
James Marroquin is an internal medicine physician who blogs at his self-titled site, James Marroquin.