By Karen Mulvihill DNP, APRN, ACHPN, FNP, ACHPB
Director of Palliative Care Services at Danbury Hospital in Connecticut
This is a daily discussion I have with patients and families dealing with a chronic life-limiting illness. The first discussion usually centers around why palliative care is not hospice. Palliative care should be part of the treatment plan from the time of diagnosis of an illness through end of life and hospice care. That may be years in some cases!
Palliative care is for ANY patient with a chronic illness who is experiencing a decreased quality of life because of symptoms related to their illness or treatment, like renal dialysis, oxygen therapy or chemotherapy. And hospice care is only for patients who are no longer receiving curative treatments for their illnesses, and want to focus ONLY on quality of life. Hospice patients have a prognosis of six months or less, if the illness were to follow the usual course. Hospice is a type of palliative care. I describe as an umbrella. Palliative care is the umbrella, where we are focusing on symptom control to get you through treatments, advance care planning, and quality of life. Hospice and end-of-life care fall under the umbrella when the focus of care changes. Bereavement care is also under that umbrella, for family support after a death.
Unfortunately, because of this misunderstanding, many patients with chronic illnesses never even know palliative care is an appropriate option. Many people think it is just for cancer patients, but that is not the case. Patients with heart disease, lung disease, neurological diseases and dementia are also appropriate for palliative care. Chronic illness can cause many symptoms and have a negative impact on quality of life. The symptoms may include pain, fatigue, anxiety, or nausea to name a few. The symptom could be I am too tired to play with grandchildren, or golf or go on a family trip. Palliative care is there to look at the patients and family as whole and see how we can help improve everyone’s quality of life.
And because the other important role of palliative care is to discuss advance care planning, that’s often not in place as well. Advance Care Planning can clarify what your wishes are if an illness is terminal or in the case of an accident where you can no longer speak for yourself. Terminal meaning: without life sustaining treatment, such as CPR and artificial feedings, the person is likely to die in a relatively short amount of time. An Advance Directive is the document that clarifies your wishes and may include a living will and someone you assign to make your medical decisions if you are unable. Everyone should have an advance directive, especially those with chronic illnesses. Advance Care Planning can also include discussing your disease process and prognosis. Meaning, what to expect as your disease gets worse over time. Whether you are going to live months or years, it is important to understand you disease process. It will help be prepared for the future.
The misunderstanding of what palliative care is and it is for places a large burden not only on patients, but on society. Most health care dollars are spent during the patients’ final three months of life, and often because palliative care and advance care planning were never discussed. So Palliative Care is for any patient with a chronic life-limiting illness and could be provided throughout the course of an illness. Hospice is a type of palliative care for patients who are the end-of-life and wish to focus only on quality of life.