Message Lab BriefingNational Coalition for Hospice &

Palliative Care

9 September 2020

Marian Grant, DNP, RN

Anthony Back MD

What we’ll do

1. Why this is needed

2. What the research shows

3. Tested principles

4. Your questions

1. Why this is needed

5

6

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New York Times, March 7, 2019

“As a palliative care doctor, I spend

much of my time face-to-face with

pain and suffering, debilitating disease

and death.”

Aligned messaging could improve public engagement

3-year grant starting March 2019

The John A. Hartford Foundation & Cambia Health Foundation

Built on previous CareLab project that examined future scenarios of serious illness care.

Project team• Anthony Back MD, University of Washington

• Marian Grant DNP, RN, content and marketing consultant

• Patrick McCabe, McCabe Messaging Partners

What is messaging?

Messaging is a public health strategy for changing health behavior.

Messaging is the frame for the words that might appear in a social

media post, or a billboard.

It differs from patient-clinician communication—this project is aimed at

introducing the public to serious illness care.

Research on consumer perceptions is critical to craft effective

messages.

Examples of successful health messaging campaignsSmoking cessation

https://betobaccofree.hhs.gov/tobacco-free-campaigns

Drunk driving “Friends don’t let friends drive drunk”

https://www.adcouncil.org/campaign/buzzed-driving-prevention

HIV prevention

https://whatworksinyouthhiv.org/strategies/social-media-and-

marketing-strategies/strategies-social-marketing-campaigns

The leading organizations are all committedSICP Serious Illness Care Program Ariadne Labs

CAPC Center to Advance Palliative Care

C-TAC Coalition to Transform Advanced Care

The Conversation Project

National POLST

Respecting Choices

VitalTalk

NCHPC National Coalition for Hospice and Palliative Care

AAHPM Academy of Hospice and Palliative Medicine

NHPCO National Hospice and Palliative Care Organization

2. What the research shows

Research over the past decade shows 3 profiles of public awareness2011-2020 published studies of consumers (not patients)—many using samples weighted for diversity to represent the US population

Awareness/attitudes Advance care planning (ACP)

Palliative care (PC)

Hospice

Findings

• ACP awareness high, participation low

• PC awareness low and misconceptions that it is for end of life

• Hospice awareness high, but concerns about quality & hastening death

These findings were the basis for designing messaging principlesJ Palliat Med 2020 online

We drew on a successful national example that involved many professional orgs

Choosing Wisely is a public

campaign about unnecessary

tests and procedures.

It involved >80 professional orgs

who all signed on to a common

set of messaging principles.

Coalition members can play a

crucial role in improving ways to

engage the public.

We used a stakeholder process to create messaging principlesSpeak from ‘we’

We’re in this together—this is not one ‘expert’ telling you what to do.

Talk up the benefitsLead with living well rather than dying.

Present choices for every stepThere is a continuum of care and services available.

Use storiesUse positive stories and don’t bombard with statistics

Emphasize caringHuman connection is motivational

Invite dialogue—and not just onceThe call to action is to talk with family, friends, professionals

We tested the messaging principles with focus groupsEven though we used research to derive the principles, we

went back to test them with the target audiences

Focus group composition

• “Older adults who could become patients” >70 years

• “Adults who could be caregivers” 50-70 y

• “Providers dealing with serious illness”, not hospice or palliative care

30% of participants were from diverse backgrounds

Began with positive ACP, PC, and hospice stories

Focus group story:

Advance Care PlanningBill, 55, is the main caregiver for his mother who has diabetes and bad kidneys.

His mother was on his mind when Bill’s doctor recently asked what Bill would want for his own care.

Bill said that if he couldn’t take his own shower or get out of bed, and things were not likely to improve, he wouldn’t want his medical treatments to focus on living longer.

Bill’s wife felt good about having this discussion, and Bill’s doctor put a form in his medical record.

Focus group story:

Palliative careLaura, 72, found out that she had had a silent heart attack and ended up in the hospital with heart failure.

A nurse explained that she was a nurse on the palliative care team, which meant focusing on helping people live well.

Nicole asked Laura what was most important to her about her care, and then arranged support that Laura didn’t know existed.

That included giving her medication for nausea, helping her with how to talk about her illness with her grandchildren, and a social worker to provide support to Laura’s husband.

Focus group story:

HospiceMartha, 85, lived in assisted living, where she had been getting more frail and forgetful.

She still enjoyed watching movies with her grandchildren and sitting outside when her daughter visited.

After she fell and broke her hip, Martha’s doctors told her that surgery to fix it was very risky. Martha thought it over and told her doctors ‘no’.

She moved to the skilled nursing part of her facility, her family brought over all her pictures, and a team from hospice—including nurses, volunteers, a social worker, and a chaplain—made her last weeks and passing pain-free and peaceful.

What consumers saidsample quotes for each principle Speak from ‘we’

“They’re trying to make you feel like you’re a part of something and they’re not going to give up on you.”

Talk up the benefits

“It gives you a handle on the illness and it kind of broadens your mind. It takes some of the pain away, some of the anxiety away.”

Present choices for every step

“It gives you a sense of control. It's what you want, not what they want.

What consumers said:sample quotes for each principle Use stories

“You can relate to something like this because the alternative is to

explain how 72% of the people do this and 32% of them do that. I’d

rather have anecdotes about people.”

Emphasize caring

“I think the basis for the message is right, but … it sounds like an ad.”

Invite dialogue- and not just once

“The important thing is getting the conversation going, and this is not threatening. It’s reassuring to me.”

Consumers don’t get our terminology

Terms widely used in serious illness care fraught with misconceptions:

• Nearly all who had heard of palliative care (which wasn’t many) thought it was for end of life

• Some thought hospice intentionally hastened death

• Most thought ACP meant agreeing to DNR order

• Most were confused by idea that they should express preferences or set goals

Participant comfort with conversations seemed to correlate with positive past experience.

Most prefer conversations be initiated by a long-term provider.

Themes we heardMany viewed medical care from an instrumental, transactional perspective, and saw clinicians as overwhelmed and distracted.

There is an undercurrent of suspicion that medicine is a business, that

their best interests can be undercut by profit motives that are not

stated.

Their default story of serious illness is conveyor belt medicine—the

system takes you forward with little discussion until there is ‘nothing

to do’.

Some acknowledged the strong emotions generated by serious

illness but there was little confidence and few anecdotes about successfully navigating strong emotions.

Food for thoughtParticipants have little sense that the best care would take them stepwise through a serious illness.

They collapse advance care planning, palliative care, and hospice into a single concept: the idea that dying requires a difficult decision to stop

treatment.

Public messaging could introduce advance care planning, palliative care, and hospice as different phases of living with a serious illness(although none of the participants had a concrete idea of what ‘living

well’ would look like).

What serious illness providers saidSerious illness providers hesitate to initiate these conversations.

“We get a lot of backlash from our patients; it’s hard to bring it up”

These providers want their expertise to be acknowledged.

“They don’t understand the extremes we can go to keep them alive”

They worry patients will choose care they don’t want to prescribe.

“My initial reaction [is] people are sugarcoating it and being ambiguous

like, ‘We’re all here to do whatever you want.’”

They agreed on what hospice is, but not ACP or PC.

“I guess it depends upon what you mean by palliative care…”

3. Latest messaging principles

We revised the messaging principles

Talk up the benefits.These services and care improve peoples’ lives.

Present choices for every step.At every stage of an illness, you have choices.

Use stories.The stories that resonate are positive and aspirational.

Invite dialogue—and not just once.The call to action is to talk with someone.

Invoke a new team.Patients, families, clinicians, & community orgs all have a role.

How to use the messaging principles

Think of the messaging principles as a toolbox that can help your

organization talk to the public.

We are not trying to achieve consensus on the principles—we are

offering them to improve your organization’s ability to engage the

public.

The messaging principles are guidelines to use when you write

copy—they are not the actual words you would use in a video, or

website, or other collateral.

You don’t have to use every messaging principle in everything—use

the one(s) that fits.

Has COVID changed these principles?

COVID is serious illness, but not the kind consumers know.

For many consumers, access to care has been fraught.

For older adults, a new fear: dying alone.

Information is politicized & contested.

Can we acknowledge this moment?

We are doing new focus groups & will have news on new consumer research focusing on diverse populations soon!

Parting thoughts for Coalition members

We want to enable your org to be more effective in engaging the public and other professionals.

We view every member of the National Coalition as an ally in creating aligned messaging.

These principles will evolve as we use them, so whatever you learn will help all of us.

These principles are for introducing the public to our work. To counsel a patient, turn to research and practice on patient-clinician communication.

4. Your questions & comments

Thank you.Send comments or questions totonyback@uw.edu