Skip to main content

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

Comments

Earl Quijada said…
I like the 3 points - concrete, relatable, clearly helpful. Nice. Thanks.
VNSNY said…
Pediatric nurse for the Visiting Nurse Service of New York, Sandra McTernan wrote a heartbreaking piece about a baby with a rare disease. And while we often don't want to think about babies and death in the same sentence, she writes: "Palliative care in the home is not for every family but for this family it made it possible to spend the precious little time they had with their baby in a comfort of home."
http://blogs.vnsny.org/2011/07/19/infants-and-palliative-care/
Cathy C. Schubert, MD said…
Actually, I have to explain what Geriatrics is to almost every patient I see. While there is often a son or daughter sitting next to the bed or exam table nodding his/her head enthusiastically during my introduction, most of my older adults have never heard of a geriatrician.
Alex Smith said…
Thanks Earl, glad you like these words. I have to credit David Giansircusa for teaching me the original "3 things" when I was a palliative care fellow.

Cathy - interesting that you have to explain Geriatrics! I wonder if anyone has doen similar research to CAPC's study on the lay public's familiarity and sense of meaning of the word "Geriatrics".
I wrote on this in my blog for the huffington post. Here is the link - http://www.huffingtonpost.com/rev-martha-r-jacobs/thanks-to-dr-jack-kevorki_b_877357.html I heard from many people that they found it helpful to them and they forwarded it to others whom they knew would find it helpful.
Alex, thanks for your post. At HealthCare Chaplaincy, we've adopted the new definition recommended by CAPC and have added this point: "Palliative care treats the whole person – body, mind, and spirit.” At times we use this short statement: “Palliative care improves the quality of life of patients with a serious or chronic illness and their families, matches treatment to the patient’s values and goals, reduces suffering, and treats the whole person – body, mind, and spirit."
Kath said…
Hello! Great blog, and great title for your blog site! We need some serious "cross-pollination" between the geriatric and the hospice palliative care communities.

Re the topic of introducing oneself, on occasion HPC consultants are asked to NOT tell who they are, and where they come from, because "the person is not ready". I believe that wearing our name tags identifying that we are from a HPC team,is partly an intervention in itself and helps people move one step further on the path to being able to talk about and investigate what it is that we can offer.

In addition to the topics above, I was mentioning the other day, one of my favorite ways to respond to people when they say, "The doctor says there is nothing more they can do for me". I love to introduce HPC by saying, "When the doctor says that there is nothing more to do for you, that is when Hospice Palliative Care team says, "We have only just begun!"" And then I explain some of the concepts that you have talked about.

Thanks for your blog!
Kath
Anonymous said…
Hi,
I start by introducing myself as a nurse who works with pt's who have chronic illness, treatable but not curable. (Then give their dx as an example). Explain how my program supports, educates and helps their doctor manage illness/symptoms. By then they are interested, then I throw "Palliative Care" in there and explain. Otherwise they often are so distracted by PALLIATIVE, that they don't hear what it is I have to offer. 6 years, so far, it works great for me.

Popular posts from this blog

The Dangers of Fleet Enemas

The dangers of oral sodium phosphate preparations are fairly well known in the medical community. In 2006 the FDA issued it’s first warning that patients taking oral sodium phosphate preparations are at risk for potential for acute kidney injury. Two years later, over-the-counter preparations of these drugs were voluntarily withdrawn by the manufacturers.  Those agents still available by prescription were given black box warnings mainly due to acute phosphate nephropathy that can result in renal failure, especially in older adults. Despite all this talk of oral preparations, little was mentioned about a sodium phosphate preparation that is still available over-the-counter – the Fleet enema.

Why Oral Sodium Phosphate Preparations Are Dangerous 

Before we go into the risks of Fleet enemas, lets spend just a couple sentences on why oral sodium phosphate preparations carry significant risks. First, oral sodium phosphate preparations can cause significant fluid shifts within the colon …

Length of Stay in Nursing Homes at the End of Life

One out of every four of us will die while residing in a nursing home. For most of us, that stay in a nursing home will be brief, although this may depend upon social and demographic variables like our gender, net worth, and marital status. These are the conclusions of an important new study published in JAGS by Kelly and colleagues (many of whom are geripal contributors, including Alex Smith and Ken Covinsky).

The study authors used data from the Health and Retirement Study (HRS) to describe the lengths of stay of older adults who resided in nursing homes at the end of life. What they found was that out of the 8,433 study participants who died between 1992 and 2006, 27.3% of resided in a nursing home prior to their death. Most of these patients (70%) actually died in the nursing home without being transferred to another setting like a hospital.

 The length of stay data were striking:

the median length of stay in a nursing home before death was 5 months the average length of stay was l…

Opening the Black Box of LTACs: Podcast with Anil Makam

What happens in Long Term Acute Care Hospitals, or LTACs (pronounced L-tacs)?  I've never been in one.  I've sent patients to them - usually patients with long ICU stays, chronically critically ill, with a gastric feeding tube and a trach for ventilator support.  For those patients, the goals (usually as articulated by the family) are based on a hope for recovery of function and a return home.

And yet we learn some surprising things from Anil Makam, Assistant Professor of Medicine at UCSF.  In his JAGS study of about 14,000 patients admitted to LTACHs, the average patient spent two thirds of his or her remaining life in an institutional settings (including hospitals, LTACs and skilled nursing facilities).  One third died in an LTAC, never returning home.

So you would think with this population of older people with serious illness and a shorter prognosis than many cancers, we would have robust geriatrics and palliative care in LTACs?  Right? Wrong.

3% were seen by a geriatrici…