By Agnes Herman
North County Times
June 19, 2012
The term “palliative care” can be scary, it is associated with end-of-life care and appears to have an implicit meaning: There is nothing more we can do. All hospice care is palliative, but all palliative care is not hospice. Whereas hospice care usually refers to the last six months of life, its companion palliative has no such parameters.
Palliative care, according to the June Mayo Clinic Newsletter, is a relatively new medical specialty. “It focuses on relief of symptoms and stress associated with serious illness.” There are numerous folks who live with kidney disease, take regular trips to the hospital for dialysis treatments. Others continue to live with heart disease, rheumatoid arthritis, cancer, dementia, stroke, etc.
Chronic illness, as well as a terminal disease requires teamwork that, in turn, exists only when there is communication and shared effort among those who care for the patient. When we are ill, we are part of that team. Family doctors, specialists, nutrition professionals, social workers/counselors, spiritual mentors are frequently needed to support the patient, help families plan and insure patient comfort. In some cases, extra support is required because depression occurs when recovery is slow or not moving.
Palliative care does not mean the end of regular care or lack of treatment. It simply means intense focus on physical comfort and well-being. When my mom was recovering from exploratory surgery in 1957(before CT scans and MRIs), the doctor said the words that one hears frequently: “We will do our best to keep her comfortable”. Today, folks are living longer, surviving despite illnesses that simply meant imminent death in the past. Therefore, “keeping one comfortable” takes on more complex meaning.
Palliative care can, therefore, mean managing a disease, helping people to live more comfortably despite illness. It can help us to live better at any stage of a chronic illness. For example, I have a niece with severe rheumatoid arthritis. Home from the hospital after corrective surgery, her team includes the family, regular doctor, specialist, a rehab therapist and a visiting nurse. Together, they take care of her physical needs, her emotional support, her transportation and her medical and daily living questions. Together, they also help her maintain confidence in her ability to live as normally and as comfortably as possible.
At Mayo Clinic, a recent five-year study of concluded that folks with cancer showed clear benefits from early palliative care services. That meant the hospital did not wait to offer it until treatment was finished, but provided the specialized care along with chemotherapy and radiology. Some of those folks even lived longer than normally would have been expected.
There is another piece to palliative care that is important. Beyond the comfort of warm blankets, special exercises and diet, it is important to meet other needs. Chronic, long-term and end-of-life illnesses carry emotional, financial and spiritual stress. The job of a palliative specialist is call up the team as needed.
The Mayo Clinic newsletter shared an example that clearly demonstrates how palliative care works in situations where death is not imminent but a long haul of illness is on the horizon. A woman with heart disease and a sick husband was stressed out as she tried to move around her house, face breathlessness, everyday financial and spiritual issues that come with every illness. Clearly, they both needed extra care. It was suggested that she discuss more than breathlessness with her doctor who immediately included a palliative care specialist and a team was developed. In the long run visits by a chaplain, a counselor and a home health care professional were organized for the woman. She was enabled to open up and talk about her concerns for her husband, discuss the treatment she did or did not wish for herself. The support she received enabled her to manage and live more comfortably with her illness. She was even able to talk about the future and discuss her wishes.
When death is imminent, all these supports are put in place for the patient and family. Those not threatened by death need the same kind of support and understanding. That is disease management, allowing folks to live better with a disease at any stage, even while treatments are underway.
My niece with rheumatoid arthritis now knows that her family is there for her and will help her to manage her disease. She understands that counseling support is available to discuss fears about what she can anticipate in the future. Her team will help her understand that she is still a whole, cared for individual who can learn to live within her limitations. No, palliative care is not only for hospice patients.