My friends often say, “I see you have a specialty in Palliative Care. Isn’t that about dying?”
Actually, it is about living. It is about coming to terms with the health issues you might have, and making decisions about what you want from life, how you want to live, what your priorities are.
Palliative Care is a relatively new specialty. It came about to address those with chronic illnesses, who had a burden of suffering from those illnesses, and who did not realize they had some choice about how they were cared for. Illnesses like Congestive Heart Failure, Emphysema, Cancer, Dementia, Parkinson’s Disease, and even just plain “old age” can be viewed from a Palliative Care perspective. It changes the focus from aggressive work-up and treatment, to one of improving symptoms that are changing the quality of life, understanding choices in treatment, understanding the choice of no further aggressive treatment, and what that will mean in the future. It is an approach that works towards understanding what is getting in the way of maximum function and richness in life, and trying to control those symptoms. This may be pain control, anxiety, shortness of breath, constipation, or weakness, to name just a few.
Often, Palliative Care is addressed from a team approach, with the team being made up of a physician, a nurse, a social worker, a chaplain, and other members depending upon the need (e.g. bath aides, physical therapists, respiratory therapists). The approach is to look at the whole picture. While the diagnosis and medical treatment plan is a part, looking at the home environment and social support is key. There is an effort to understand spiritual needs and allow a patient to explore this. Symptoms are identified and there is a system for ongoing monitoring and adjustments developed. It is a much more comprehensive model than the usual visit to the doctor’s office.
As a Palliative Care physician, I have been impressed by how little patients often know about the choices they have in the treatments they are receiving. So few realize that they can “opt out” of continuing aggressive treatment, without being abandoned by the medical system. Even fewer understand that they can be the ones to direct the focus of treatment, as a result of some deep introspection about what is important to them in their lives. Many people do not understand the issues around CPR, and the statistics for various groups in terms of making a meaningful recovery.
The conversations a Palliative Care team has with patients are different. We bring up “uncomfortable” issues in the hopes of dealing directly with patient needs, desires, fears. We try to be direct and honest about prognosis, and not sugar coat things. This is not to remove hope, but to allow a person to make informed decisions based on realistic expectations. Knowledge is power for patients, if delivered in a loving, supportive, and compassionate way.
So, now you see. Palliative Care is not about dying at all. It is about making the most of the life we have.