Why Is Community-Based Palliative Care Declined? Older Adult,Caregiver,and Provider Perspectives

Abstract

Background:

Palliative care can help manage health challenges of seriously ill individuals, including persons living with dementia (PLWD), but is often declined.

Objective:

Explore why seriously ill individuals and caregivers decline palliative care.

Methods:

A pilot study using semi-structured interviews with three Medicare Advantage plan members and 15 caregivers, including 13 caregivers of PLWD, who declined palliative care (PC) within the previous year and focus groups with five PC staff.

Results:

Reasons for declining included mis-association with hospice, not seeing additional benefit to current care, and reluctance to change current care. PC staff provided additional reasons: challenges engaging with the outreach team, need for family-based decision-making, and reluctance to engage with unfamiliar persons.

Conclusions:

Incremental adjustments in PC communication may facilitate uptake, including providing explanations that are distinct from hospice, tailored to care needs, focused on reducing illness burden, and introduced by the current care team.

Keywords

caregivers decision-making delivery of health care Medicare Part C palliative care

Introduction

Six in ten (63.7%) Americans aged 65+ have multiple chronic conditions¹ and 10% have dementia,² which is associated with functional decline,^3,4 increased mortality risk,^4,5 and lower quality of life.^6,7 Approximately 25% have serious illness,⁸ characterized by poorly managed chronic conditions,⁹ and experience high symptom burden,¹⁰ frequent acute care utilization,^11,12 and caregiver strain.^13,14 Community-based palliative care (PC) can reduce health care utilization and improve symptom control, quality of life, and patient and caregiver satisfaction.^15–17 However, many potentially eligible persons decline PC. Individuals decline PC due to lack of knowledge, conflation with hospice, language barriers, unclear provider-patient communication, difficulty engaging with service outreach, and perceptions that the patient is too healthy.^18–20

Persons living with dementia (PLWD) and their caregivers are often underrepresented in PC and may have unique preferences and perspectives on PC engagement, which is understudied.²¹ Medicare Advantage (MA) plans cover a majority (54%) of Medicare beneficiaries,²² and increasingly offer PC,²³ making them an important setting for understanding PC engagement. To expand knowledge of why PC is declined, this study solicited insight from seriously ill individuals and family caregivers, many for PLWD, who were eligible for PC included as part of their MA plan. We include PC staff perspectives.

Methods

Study design and setting

We conducted this pilot qualitative interview study from April to November 2024 with an MA plan within a nonprofit health plan and care management organization serving a racially, ethnically, and socioeconomically diverse population in a large Northeastern United States city. The MA plan provides free telephonic and in-home primary PC by nurses, social workers, and nurse practitioners in consultation with physicians. Recipients can receive PC as an additional service, maintaining existing clinicians and services. Outreach staff, care managers, and nurse practitioners receive training in explaining PC. This study was approved by the VNS Health and Rutgers University Institutional Review Boards.

Study population

Seventy-five MA members were eligible for the study because they were offered community-based PC in the previous year and declined, regardless of diagnosis. Participants declined PC at multiple stages: initial telephonic outreach, care management, or home visit. Fourteen were not interested, 20 unreachable, and 12 ineligible (e.g., deceased). Twenty-four consented. Five were not contacted due to data saturation. Caregivers were interviewed if the member was unable to participate (e.g., due to dementia). Due to the large proportion of participants living with dementia, after identifying key themes, post hoc analyses were conducted, matching responses within themes to diagnoses to determine whether themes related to dementia caregivers. The final sample was three members and 15 caregivers providing information about why they declined PC. In addition, all five PC staff employed by the partnering organization and working full-time in the PC program participated. The PC team included outreach/care managers (n = 3) responsible for eligibility screening and ongoing case management and nurse practitioners (n = 2) conducting in-home visits; all had 7–40 years of professional experience (M = 18.8, SD: 13.5) and 1–3 years on the PC team (M = 2, SD: 0.7).

Data collection

Interview and focus group guides were developed by study leaders K.H.B. and E.A.L. with expertise in PC. One-time, one-hour interviews with members and caregivers and three one-hour focus groups with up to three PC staff (two individuals participated in two focus groups) were conducted over videoconference by K.G.S., E.A.L., and other study staff with expertise in qualitative interviewing. Sessions were audio recorded and transcribed using Zoom transcription, reviewed for accuracy, and deidentified by study staff. On average, interviews lasted 27 minutes (standard deviation (SD): 12), and focus groups lasted 53 minutes (SD: 7). Participants completed a demographic survey and received $75 for each interview or focus group.

Data analysis

We compiled descriptive statistics for participant demographic information, presented in Table 1. We analyzed transcripts for themes related to reasons for declining PC.²⁴ Most codes were developed deductively by E.A.L. and K.H.B., based on the research and interview guide questions; a small number were added inductively during analysis, based on frequently mentioned subtopics, and compiled into a codebook.²⁴ K.G.S., L.K., and trained study staff independently coded, then met to review and discuss discrepancies;²⁴ intercoder reliability was assessed in NVivo using Cohen’s kappa scores (mean: 0.97; SD: 0.02).²⁵ Upon coding completion, E.A.L. and K.G.S. reviewed, grouped them into themes, and selected illustrative quotes.²⁴

Table 1.

Demographic Information for Participants

Characteristics	All (N = 23)	Percentage (%)
Participant type
members	3	13
Caregivers	15	65.2
PC Team	5	21.7
Sex
Female	16	69.6
Male	7	30.4
Race
Asian	1	4.3
Black or African American	13	56.5
White	1	4.3
More than one race	2	8.7
Other	3	13
Don’t know/declined to answer	3	13
Hispanic ethnicity
Hispanic, Latino/a, Spanish	7	30.4
Not Hispanic, Latino/a, Spanish	14	60.9
Don’t Know/Declined to Answer	2	8.7
Age
<50	5	21.7
50–54	6	26.1
55–59	4	17.4
60–64	3	13
65+	5	21.7
Relationship to member (caregivers only)
Child	9	60
Other family	6	40
Education level
Secondary level education (high school)/ GED/ equivalent or less	3	13
Some College	5	21.7
Bachelor’s degree or higher	15	65.2
Members’ diagnoses relevant to palliative care eligibility^a
Dementia	13 (3)	56.5
Circulatory (congestive heart failure, heart failure, and hypertension)	5 (1)	21.7
Aging/Frailty	2 (2)	8.7
Kidney (chronic kidney disease, and renal failure)	2	8.7
Respiratory (chronic obstructive pulmonary disease, and pneumonia)	2	8.7
Cancer	1	4.3
Other	4	17.4

Total adds up to more than number of seriously ill individuals because individuals may have more than one diagnosis. Parentheses indicate diagnoses disclosed during interview. Nonserious illnesses included if they are the member’s primary diagnosis.

Results

Participants most often identified as female (69.6%), Black (56.5%), and not Hispanic (60.9%). Among 15 caregivers, 60.0% were children of the eligible member, and 86.7% cared for a PLWD (see Table 1 for additional information). Our analysis identified three themes: mis-association with hospice, not seeing the benefit of PC, and reluctance to change current care. PC staff concurred and identified additional reasons: reluctance to engage with the PC outreach team, family-centered care decision-making, and hesitance to discuss care needs with unfamiliar people. All results included experiences of caregivers of PLWD, albeit not exclusively. Table 2 provides illustrative quotes for each theme.

Table 2.

Illustrative Participant Quotes for Why Individuals Decline Palliative Care (PC)

Sub-theme	Quote
Mis-association with hospice
Not seeing loved one as terminally ill	“I think I told her no I didn’t want because I thought it was something like hospice, so I told her that my mom’s not dying” (caregiver 13)
Discomfort engaging in end-of-life discussions	“I think that the reason why we didn’t do it was because my mom in her mind still feels like she’s not dying… So, when we told her, she was like, ‘Well, I’m good,’ like, ‘Why are we talking about this?’ and ‘Do you want this to happen to me?’” (Caregiver 1)
Discomfort engaging in end-of-life discussions	“Depending on what the person’s past experience is, once they hear palliative care, they automatically go to hospice… I’ve had people kind of jump down my throat automatically, and then, ‘Oh, no, no, no, we’re not ready,’ and so I have to explain to them that, it’s not hospice, it’s palliative care… some people are still, very leery” (PC Staff 2)
Not seeing benefit in addition to current care
No need for pain or symptom management support seen as sole benefit of PC	“…she’s not in pain. She sleeps a lot. She’s not like, you know, moaning or groaning. She looks peaceful for most part of the days… never have we picked up that she is in pain, or in need of some relief” (Caregiver 10)
	“It didn’t seem like she was there just yet… because she doesn’t really have any chronic disease. She is not uncomfortable beyond needing a Tylenol for her back… That’s the only reason why we declined.” (Caregiver 4)
	“If they’re very independent, they like, ‘What are you gonna do for me? I go—I see my doctors. I have my medications. What are you here for?’” (PC Staff 9)
No perceived distinction or benefit of PC in addition to current care	“I could not see the difference between what you were offering and right now she has (health plan) … if I suggest that she’s having an issue, a problem, they immediately put me in touch with somebody… with what they do, and what her doctors do, I’m thinking, why do I need another person?” (Caregiver 15)
	“The way it was described to me, there was no additional assistance for my mom above the level that she’s receiving right now from her health care plan… I didn’t see a benefit, … There was nothing additional that I saw that that I would say, okay, this will help my mom more than what’s currently being done” (Caregiver 6)
Reluctance to change current care
Not wanting to switch health plans	“I have my current insurance… that’s pretty good, so. I got the Medicare, so, I didn’t need that. That’s what it was, I didn’t need it… I just don’t like to jump from one to another. There’s too many, everybody’s selling something…I’ve got something that’s working, I’m not going to change” (Member 1)
Not wanting to disrupt functional care team dynamic by changing team members	“To kind of like have control and know who is in the medical circle of his care... if our dynamic is working just fine right now, I would always think about it twice before I let someone else into that triangle or circle. And I wanna make sure that it’s beneficial to him if he is gonna receive something” (Caregiver 3)
	“She’s okay like she is…with the insurance she has and with the doctor and she has 3 home attendants… she knows them very well, and I think at this point, if you change something of hers, she might become confused or she might not like it… so far, what she has is working for her” (Caregiver 18)
Concern about losing care team members	“They think that we’re gonna come out and take away their doctors, that they’ve been seeing for 40, 50 years…I deal with that all the time. ‘Am I gonna lose my aide? Am I gonna lose my doctor if I come off this program?’” (PC Staff 9)
Reasons provided by PC staff
Family/member unable to engage with outreach	“I need to reach out to their family members, and sometimes their families, they’re so busy that they don’t want to deal with it… I do get a lot of family members who refuse the program because they don’t want to deal with it, don’t wanna take that extra time to look into it” (PC Staff 1)
Need for family-centered shared decision making	“It’s usually, most of the time, if they want to talk to a family member before they sign up…do you want me to talk to that person? I’ll be more than happy to talk to family member, whomever that you want me to talk to before you will agree, because you really don’t want to force them either... You have to make sure this is something they agree, and they are comfortable with it” (PC Staff 9)
Reluctance to engage with unfamiliar persons	“I think that there have been so many people that, they’ve had experiences where they signed up for something and then ended up being bamboozled into something else that they’re very hesitant” (PC Staff 2)

Bolded text is emphasis to highlight key themes.

(Mis)associating PC with end-of-life care: “My mom’s not dying”

Caregivers and members declined PC because they associated it with end-of-life care or hospice, and did not see their loved one as terminally ill. This was a deterrent especially if the member avoided end-of-life discussions. All participants who declined for this reason were caregivers of a PLWD. PC staff corroborated this, sharing they often encountered members and caregivers reluctant to engage with perceived end-of-life discussions. They reported families who do not think their loved one needed end-of-life care found discussing PC distressing, even if the individual was not near the end of life.

Unclear benefit of PC: “what are you gonna do for me?”

Participants also declined because they did not understand how PC might benefit the member. Caregivers indicated the member did not need help with symptom management, a core, but not the only, component of PC. Several did not believe the member needed additional care since they did not experience discomfort or pain. PC staff corroborated this sentiment, particularly when members viewed themselves as independent and successfully managing their care. Some felt explanations at outreach regarding how PC support would address unmet needs were insufficient, leading to declining.

Not changing current care: “I’ve got something that’s working”

Participants declined PC because they did not want to change their health care and believed accepting PC required changes, including not wanting to switch health plans, reluctance to add to or change the clinical team, and concerns about the impact of changes on behavioral symptoms of PLWD. Several participants emphasized they did not want to disrupt their existing, well-functioning care team. Caregivers were reluctant to risk member confusion upon introduction of unfamiliar people into the care team. PC staff echoed caregivers’ concerns about losing or changing team members.

PC team perspectives on reasons for declining

PC staff provided additional reasons caregivers and members decline PC. First, the person receiving the initial outreach may not have the time or capacity to learn about the program (e.g., the member is too ill or the caregiver is highly burdened). Second, caregivers often cannot make care decisions without consulting other family members. Lastly, some caregivers and members were suspicious of unfamiliar people and understandably hesitant to share health information during telephonic outreach.

Discussion

This study adds to limited literature on reasons why PC is declined by incorporating perspectives from MA plan members (members), their caregivers, and PC staff. It corroborates prior findings about PC perceptions and decision-making in the understudied population of PLWD.²¹ All findings included perspectives of caregivers of PLWD (albeit not exclusively), providing insights regarding why families impacted by dementia may decline potentially useful supportive services. Below are strategies proposed by the participants to address the reasons for PC declination that may encourage uptake (summarized in Fig. 1).

FIG. 1.

Reasons for declining palliative care and strategies to increase uptake.

Consistent with prior literature, we found that associating hospice with PC contributed to declining services.^18,19,26 Clearly distinguishing PC from hospice and emphasizing how PC can be beneficial for illness management may increase acceptance.²⁰ In our sample, all participants who presented this reason were caregivers of PLWD, highlighting a potential area for education among caregivers of this underrepresented group in PC.

Many participants believed they understood PC but indicated they did not see how PC added benefit to current care. Adopting a personalized approach to naming and matching PC to individualized care needs beyond current care may improve uptake. Education on how PC can address symptoms other than pain may help connect PC benefits more directly to individuals’ health concerns. Individuals and families may understandably decline services they feel are unnecessary. Future research should explore how PC teams can connect with those who previously declined PC but who may engage with PC as their circumstances change.

Many caregivers and members were content with their current services and/or had concerns with PC disrupting existing care, adding new clinical team members, and losing their current care team, which they believed PC entailed. Caregivers and those with serious illness often encounter burden^9–11 that may limit their ability to tolerate changes to care. Having current, familiar care team members introduce PC and emphasize integration with existing care may increase uptake.²⁰ Standardizing the approach by having one person introduce PC may be beneficial to help recipients feel supported. For some caregivers, hesitance to accept PC may signal a need for family decision-making, thereby delaying or complicating acceptance. Although shared decision-making has mixed results with respect to PC uptake,²⁷ engaging and educating all family members involved in decision-making may alleviate the burden on primary caregivers and facilitate uptake.

This was a pilot study with limitations, including a relatively small sample from one MA plan. However, it was racially and ethnically diverse and included participants with a variety of diseases and education levels. Fewer members participated than caregivers, perhaps due to serious illness burden. Members may have been less burdened and less likely to see themselves as needing PC, although their expressed views were consistent with caregivers. We were unable to analyze the experiences of individuals uninterested in participating. We could not ascertain the point at which PC was declined (outreach, care management, and home visit), which may be related to the reasons people decline. Including perspectives of PC staff provided a broader spectrum on why PC is declined.

PC continues to be declined by eligible individuals, even when provided at no cost and to populations with challenging and often unmet care needs (e.g., dementia). Differentiating PC from hospice, explaining benefits tailored to individuals’ health statuses, and current clinicians introducing PC may improve uptake.

Authors’ Contributions

E.A.L. and K.B.: Developed the conceptual idea for this project. E.A.L.: Supervised the study and collected the data. K.G.S. and L.K.: Conducted the coding. K.G.S. and E.A.L.: Conducted the analysis and interpretation of the results. K.G.S.: Drafted the article with input from all authors.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

Funding Information

Research reported in this publication was supported by a pilot grant from the University of Pennsylvania Roybal Center on Palliative Care in Dementia and the National Institute on Aging (NIA), a department under the National Institute of Health (NIH), under award number P30AG064105. The content is solely the responsibility of the authors and does not represent the official views of the National Institutes of Health.

Ethics and Consent

All study procedures were approved by the health care agency’s Institutional Review Board (IRB) and the Rutgers University IRB. All participants provided informed consent.

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