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 vs. hospice care
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. Hospice care is a type of palliative care 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. 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.
Palliative care for chronic illnesses and advance care planning
Unfortunately, because of this misunderstanding, many patients with chronic illnesses never even know about palliative care as 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 such as pain, fatigue, or nausea and have a negative impact on quality of life. 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 so the patient has energy to play with their grandchildren, go golfing, or join a family trip.
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 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.