What’s in a name? How do you explain “palliative care”?

It’s July, and that means teaching new fellows how to explain palliative care to patients and family members.  For inpatient consults, that means we usually we introduce our names, say we’re from palliative care, and then ask if we can sit down.  At that point the patient or family – eyebrows raised – says, “Who are you again? You say you’re from palliative, what is that?”

A recent national survey commission by the Center to Advance Palliative Care (CAPC) suggests that three-quarters of the lay public don’t know what the term palliative care means.  We have much explaining to do.

Here’s what I say, and teach fellows to say:

Palliative care is care for patients with serious illness, like yourself.  We focus on three things:

1. Symptoms.  Patients with serious illness often have symptoms like pain, shortness of breath, nausea, constipation, lack of energy, depression, anxiety, nausea, or difficulty sleeping.  We are experts in the treatment of those symptoms.  (patients usually say, “I’ve had some of those!”).

2. Communication.  The hospital is a busy place.  Patients with serious ilness often have many doctors from different teams coming in and out of the picture.  We help with communication to make sure that the treatments you receive match your goals. (slowly, with emphasis – patients and family usually nod)

3. Finding the right services outside the hospita (for patients who might leave the hospital).  We help make sure that you have a smooth transition once you leave the hospital.  We make sure you are set up with the right services – one service we often refer to is hospice.  Another is our outpatient palliative care clinic.

For patients who have less cognitive ability, either due to delirium or dementia, I might say: “We help people with serious illness with symptoms like pain, communication with your family and your doctors, and referral to services like hospice.”

Or there is the super short version the fellow I worked with came up with spontaneously, “We’re the palliative care team, think of us as Pal’s for people with serious illness.”

The version CAPC research demonstrated to have the best rating/positive impact was:

Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness – whatever the diagnosis.

The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.

I like this version.  It reminds me that my definition doesn’t mention the team aspect of palliative care, or the fact that palliative care can be deliviered at any stage in a seriours illness.  On the other hand, I think the words I use benefit from being more concrete — in terms of immediately relating to the patient and family how we can help them.  I also find it easier to remember my 3 things than this script.

But I’m open to new things.  I’ll have to “try on” these new words next time I’m on service.

How do you explain Palliative Care?  For those of you practicing Geriatrics, do you find you need to explain Geriatrics?  My guess is no.

by: Alex Smith