End-of-life care puts patient first

By Dr. James Bell

This year everyone is talking - and most have a strong opinion - about changing health care in America. Fear has driven much of the discussion, and nowhere has that been more apparent than end-of-life care.

Allow me to introduce you to the newest medical specialty in our country: hospice and palliative medicine.

When the hospice Medicare benefit was created 30 years ago, hospices were small and doctors worked part time, often in a volunteer capacity. Over the years, hospices have grown larger and better, and in the last 10 or 15 years, the palliative care movement has been generated as a related, but distinctly different, concept.

Palliative care starts with the idea that someone has a serious, perhaps life-threatening illness. The “procedure” is a meeting with the patient and family along with a team including doctors, nurses, social workers and spiritual care providers. The focus is to empower patients to make their own choices about care with a perspective on quality of life.

Often this means continuing aggressive medical treatments aimed at prolonging life. Goals of care may change as time passes, and the function of the palliative care team is to support the patient and help coordinate care in a way that advocates for the patient in what may be a complex, confusing health care environment.

Palliative medicine specialists also are trained in the management of pain and other symptoms of suffering.

Today, Americans are living longer and better than ever. When “longer” and “better” become less compatible with each other, it is critical to engage patients and their families in discussions about their health care choices. And the patient's voice needs to be the loudest.

More than half of Americans die in hospitals, and many of those have been in an intensive care unit (some for a long time) very near the end of their lives. Studies indicate most people would choose something different. When people clearly understand their health care choices and know the consequences, they may ultimately choose to forgo treatments that will likely be futile. When this happens, patients then receive the kind of care they really want, and doctors and hospitals can provide focused, directed care where it really helps.

Our ultimate goal is to do the right thing. Hospice and palliative care is nothing close to a “death squad” or individuals looking to “pull the plug on Grandma.”

Quite the contrary, this kind of care begins and ends with a fundamental respect for the dignity of human life.

November is designated as National Hospice and Palliative Care month. All of us are or will be touched in some way by end-of-life care. It's time to have a serious discussion about doing it better.

Dr. James Bell is director of St. Luke's Palliative Care and Hospice in Cedar Rapids.