Does palliative care mean dying? Not always

I have this discussion daily with patients and families dealing with chronic life-limiting illnesses. We usually start with a conversation 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. These treatments could include 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 purely 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, under which we focus on symptom control to get patients through treatments, support them through advance- care planning, and maintain and improve quality of life. Hospice and end-of-life care fall under the umbrella for which the focus of care changes. Bereavement care is also under this umbrella, including family support after a death.

Palliative care is often a missed opportunity in treating chronic illnesses and advance-care planning

Unfortunately, because of this misunderstanding, many patients with chronic illnesses never even know about palliative care as a viable and valuable 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 also benefit from 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 support patients and families as a whole and see how we can help improve everyone’s quality of life — ensuring the patient has energy to play with their grandchildren, go golfing, or join a family trip.

Because the other important role of palliative care is to discuss advance-care planning, patients and families who forego palliative care often miss out on this beneficial service. Advance-care planning can clarify what a patient’s wishes are if an illness is terminal or in the case of an accident leaving the patient unable to speak for themselves. (The definition of “terminal” means 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 a patient’s wishes, potentially including a living will and assigning someone to make medical decisions if they are unable. Everyone should have an advance directive, especially those with chronic illnesses.

Advance care planning can also include discussing the disease process and prognosis over time. Whether a patient is going to live months or years, it is important that they and their caregivers understand their disease process. It will help them be prepared for the future.