Palliative care: It's not just for people in hospice

Body: 

This is the first in a series of articles about palliative care.

What could "palliative" care possibly be? Isn't a "pall" a shroud or gloomy atmosphere - as in "cast a pall over?" Yes, but get ready for a completely different idea. Care that is palliative (PAL-yuh-tiv) is designed to cloak or cover - in other words, make recede into the background - the pain or suffering or stress felt by people who have serious medical conditions, and also to ease the distress felt by their loved ones.

People often assume that palliative care is something that happens only in hospice, when people have stopped getting aggressive medical care and are focused on making their remaining time as comfortable and meaningful as possible.

However, palliative care is used extensively outside of hospice as well, for people of all ages. These people may be expected to live for a short while - or for 20 or 30 or 40 years. They may be getting extensive and aggressive medical treatment, which may be expected to cure them - or they may have an incurable progressive disease.

CMS, the federal Centers for Medicare and Medicaid Services, notes, "Palliative care means patient-and family-centered care that optimizes quality of life by anticipating, preventing and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social and spiritual needs and ... facilitates(s) patient autonomy, access to information, and choice."

According to the Center to Advance Palliative Care (CAPC) at www.capc.org, palliative care can help people with difficult conditions such as "cancer, cardiac disease such as congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), kidney failure, Alzheimer's, HIV/AIDs and amyotrophic lateral sclerosis."

Dr. Sam Downing, medical director at Good Samaritan's Prescott Home Health and Hospice as well as at its skilled nursing center in Prescott Valley, added, "Examples of other conditions that might be present in people who can benefit from palliative care include severe diabetes, multiple sclerosis, stroke, and traumatic brain injury."

CAPC notes that palliative care can help reduce symptoms such as "pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping."

Dr. Downing added, "Palliative care also improves people's ability to function; it doesn't simply reduce pain. I would encourage people to focus on asking for help with the specific symptoms or problems that are limiting their quality of life or their function. For some people, being able to play golf again significantly improves their quality of life. For others, being able to work may be the priority, or playing with their grandchildren. If palliative care can address a symptom that's been keeping them home, keeping them from doing these things, it's a win."

He explained how palliative care can work together with traditional medical care to improve the results that patients get. "For example, people who are diagnosed with cancer should be referred not just to an oncologist but also to a palliative medicine specialist. People may be cured by aggressive treatment - surgery or radiation or chemotherapy or a combination of all three - but they will have immense symptom burden because of the treatment and because of the cancer itself. People oftentimes will refuse chemotherapy because of the side effects, but if they got good palliative care to help them manage those symptoms and remain highly functional during treatment, they probably would do better overall."

He continued, "Another important piece about palliative care is that it really is designed to address a much more comprehensive view of diseases and disease processes - such as the emotional, psychological and spiritual components; the family circumstances; and the caregiving circumstances. Palliating the emotional or psychological distress can have a great impact on people's overall improvement - if they're dealing with depression or anxiety or undisclosed anger, that may impact their pain, their desire to go out and do anything, and their functioning."

Health Affairs (the health policy journal) noted, "Patients (and family caregivers) receiving palliative care experience improved quality of life, better symptom management, lower rates of depression and anxiety, and improved survival ... crises are prevented, thereby directly reducing need for emergency department and hospital use."

Future columns will provide more information about what palliative care is and how to get it.

-- Next -- Palliative Care Treatments

To tell your story, propose a topic or ask a question, write to thegoodpatient@pariohealth.net. Bewley's new book, a collection of forty articles from this column, is available locally at Hastings and at Peregrine Books and online at Amazon. It is titled Not Your Grandmother's Nursing Home: Demystifying Today's Retirement Living Options.

Author: 
Elizabeth L. Bewley