“A rose by any other name would smell as sweet.” —William Shakespeare
Many people equate the term “Palliative Care” with giving up on life, or at least with end of life care. To be sure, skillful and humane end of life care utilizes palliative care, but it’s only a subset of the bigger picture. In a nutshell, palliative care is symptomatic management aimed at improving quality of life that can be appropriate at any age and at any stage of an illness, while hospice is palliative care provided for patients who have progressed to a terminal, life-limiting illness.
Using current standards, adult patients with a life-limiting illness and a likely life expectancy of six months or less qualify for hospice care as a health insurance benefit in the United States. My own experience is with palliative care provided for adults. Such care is also appropriate and important for families and patients where babies, children, and teenagers have progressive, life-threatening illness.
If one thinks of life as a marathon from birth to death (that’s 26.2 miles for you non-runners), palliative care might be appropriate around miles 24 or 25 to help manage symptoms related to progressive heart or lung problems, or perhaps to help treat symptoms of a cancer that has continued to progress despite best curative treatment efforts. Help with pain, emotional distress, sleeping problems, and spiritual distress are several specific aspects of good palliative care. As long as curative treatments seem to be helping a patient, they may be continued in conjunction with palliative care.
Around mile 26 in the marathon, if a patient’s serious illness has continued to worsen, and life’s finish line is a mere 0.2 miles up the road, it may be time to transition to hospice care. At that point in the race, curative treatments no longer seem to be effective, and sometimes, in fact, they create more distress and discomfort for the patient. Enhanced symptom management is the goal of hospice care; quality of life is prioritized for whatever lifespan remains, be it hours, weeks, or months.
It’s important to state that palliative care is intended to support both patients with serious illness and their families. Chronic serious illness is, indeed, a family affair. Compassionate presence, education on what to expect as a disease progresses, and tips to family members on how they can help manage symptoms are simultaneously comforting and empowering. Each of these offerings is an aspect of palliative care.
Palliative care is interdisciplinary. Generally a team, consisting of physician, social worker, nurse, and spiritual counselor, work collaboratively to provide palliative care. Teams meet regularly to brainstorm about optimal support for patients and their families.
Many people hear “palliative care” and believe the doctors and nurses are saying, “There’s nothing more we can do for you, so we’re recommending palliative care.” In fact, there are now studies that indicate palliative care may actually extend length of life when incorporated into treatment plans of some serious illnesses.
Because there is so much confusion and misconception about palliative care, I sometimes substitute, ACDC, advanced chronic disease care, as an alternate descriptor in explaining it. If this thought is music to your ears, you just might be an Australian hard rock fan as well!
In articles to follow, I’ll elaborate on additional distinctions and attempt to dispel misconceptions about both palliative care and hospice. In the meantime, if you or someone you love is burdened by the symptoms of serious illness, I encourage you to talk to doctors and nurses about the possibility of a palliative care consultation. If they respond, “No need, you’re not dying…” please educate them!
SL Hines, MD