Improving Knowledge and Attitudes About Palliative Care Through Community Collaborations: A Mixed Methods Intervention Evaluation

Abstract

Background:

Limited knowledge and negative perceptions of palliative care (PC) can result in missed opportunities to access specialty PC. Patient, caregiver, and community education may improve knowledge and attitudes about PC.

Methods:

Pre- and post-session surveys along with qualitative interivews assessed whether participation in a novel 60-minute webinar about specialty PC changed participants’ PC knowledge and attitudes. Participants were recruited in collaboration with community based organizations and included self-identified patients, caregivers, healthcare providers, and other individuals interested in the topic.

Results:

A total of 118 participants completed pre- and post-session surveys. Participants demonstrated a significant increase in PC knowledge on the Palliative Care Knowledge Scale (10.6 vs. 12.5, p < 0.001). Pre-session attitudes were positive and further improved after the educational session. Qualitative interviews demonstrated that participants learned that PC provides more services than previously thought and could ask for a PC referral.

Conclusion:

We conclude that a 60-minute webinar improved knowledge and attitudes about specialty PC, including a willingness to ask for and accept a referral to PC.

Introduction

The availability of palliative care (PC) has increased over the last two decades, and the evidence for its benefits is growing.^1,2 Despite PC’s growth, low awareness, limited knowledge, and negative attitudes about PC persist.^3–8 Education for patients, caregivers, and the community is an important step to overcome barriers to patients asking for and accepting PC.^3,5,9–14 While knowledge alone may be insufficient to promote behavior change, educational interventions rooted in social learning theories that address knowledge, attitudes, self-efficacy, and social norms may trigger behavior change.^15,16 A systematic review found that a variety of PC educational interventions improved knowledge and attitudes among public, patient, and caregiver populations and noted a need for interventions rooted in adult learning principles.¹⁷

We aimed to assess whether a novel webinar about specialty PC, designed using the theory of planned behavior, changes PC knowledge and attitudes among a purposive community-based sample that included patients and caregivers. Participants’ change in knowledge and attitudes about PC was evaluated with a pre/post survey, and perceptions of the session were captured by semi-structured interviews.

Methods

We partnered with community-based organizations (CBOs) to recruit participants through email listservs, newsletters, community calendars, and social media. A 60-minute webinar was chosen to fit with CBOs’ preexisting structures for delivering educational content to clients. Webinar content is described in Supplementary Data S1 and integrated principles of Ajzen’s theory of planned behavior, which describes that health behaviors are influenced by behavioral, normative, and control beliefs.¹⁸ Webinars were conducted using Zoom (San Jose, CA: Zoom Video Communications Inc). This evaluation was reviewed by the Stanford University Institutional Review Board and deemed to be non-research/quality improvement (IRB-65638).

Pre- and post-session surveys assessed PC knowledge and attitudes. PC knowledge was assessed using the Palliative Care Knowledge Scale (PaCKS), a 13-item true/false/don’t know questionnaire.^8,19 PC attitudes were assessed using a questionnaire adapted from Ajzen’s theory of planned behavior, which used a 5-point Likert scale to gauge participants’ level of agreement with 10 statements regarding behavioral, norm, and control beliefs.^20–22 (Supplementary Data S2). The pre-session survey captured participant demographics, including prior awareness of and experience with PC. Pre- and post-session surveys were professionally translated and back-translated to/from Spanish using our medical interpreter services.

For PC knowledge, we collapsed incorrect answers and “don’t know” responses to dichotomized variables of “correct” or “incorrect.” The total PC knowledge score was calculated by totaling the number of correct answers out of 13 questions. For PC attitude, Likert scale responses were coded, including reverse coding where appropriate, to a 1 to 5 scale for analysis, with higher scores corresponding to more favorable attitudes. McNemar’s test was used to compare correct responses pre- and post-session for each knowledge item. Wilcoxon signed rank test was used to compare pre- and post-session total knowledge scores and scores for each attitude item. Statistical significance was set at p ≤ 0.05. Means and standard errors (SE) are reported. Analyses were conducted in JMP® Pro, Version 17 (SAS Institute Inc., Cary, NC, USA).

Semi-structured interviews were conducted among participants who volunteered for a telephone-based interview using a structured interview guide (Supplementary Data S3). Interviews were recorded with participant permission using Zoom (San Jose, CA: Zoom Video Communications Inc). Interviews were analyzed using a rapid qualitative approach.²³ Using audio recordings and contemporaneous notes from interviews, two analysts (ACN, AK) independently summarized participant comments into a matrix. The two analysts and a third author (GMS) then reviewed and discussed the matrix data and summarized thematic elements within each of the columns.

Results

Between May 2022 and September 2023, 14 educational webinars were held (Table 1). Attendance totaled 284 with an average of 20 attendees per webinar. Of those attendees, 42% (118/284) completed both a pre-session and post-session survey, with an additional 88/284 (35%) attendees completing only the pre-session survey (Table 2). Most participants were female, non-Hispanic, college-educated and had non-Medicaid insurance. Approximately half of the participants identified as white/Caucasian, a third as multi-racial or other, and a quarter as Asian (Table 2).

Table 1.

Community Partners, Target Populations, and Attendance at Webinars

Organization	Target population of organization	Date (MM.DD.YY)	Language	Approximate attendance^a
Bay Area Cancer Connections	Patients and caregivers living with breast and gynecological cancer	7.28.22	English	20
		12.12.22	English	8
		2.28.23	English	5
California Department of Transportation	Employees of the California Department of Transportation	9.27.22	English	35
Cancer CAREpoint	Patients and caregivers living with cancer	5.26.22	English	2
Cancer CAREpoint	Patients and caregivers living with cancer	8.30.22	English	22
Stanford Employee Group	Employees of Stanford Health Care	6.15.23	English	17
Stanford Health Care	Patients, caregivers, and public	2.16.23	English	35
		5.23.23	English	21
		8.31.23	English	32
Stanford Lung Cancer Support Group	Patients living with lung cancer	6.7.23	English	13
ThyCa Survivor Conference	Patients and caregivers living with or surviving thyroid cancer	9.17.22	English	15
Travonde	Older adults in Bay Area, California	6.22.22	English	14
Vision Y Compromiso	Spanish-speaking community health workers	9.19.23	Spanish	45
			Total	284

Attendance numbers are based on the number of accounts logged in to each webinar. Multiple individuals may have been participating through any of the individual accounts.

Table 2.

Demographic Characteristics and Baseline Experience/Knowledge of Palliative Care Reported by Participants Who Completed the Pre-Webinar Survey (All Respondents) and Participants Who Completed the Pre- and Post-Webinar Survey (Participants)

Demographic	N	Participants n (%)	N	All respondents n (%)
Age	117		194
Younger than 29		7 (6.0)		7 (3.6)
30–39		14 (12)		23 (11.9)
40–49		17 (14.5)		31 (16)
50–59		27 (23.1)		43 (22.2)
60–69		30 (25.6)		48 (24.7)
70–79		17 (14.5)		32 (16.5)
80 or older		5 (4.3)		10 (5.2)
Gender	116		189
Female/Woman		99 (85.3)		159 (84.1)
Race	116		193
White/Caucasian		63 (54.3)		105 (54.4)
Asian		27 (23.2)		46 (23.8)
Other		12 (10.3)		22 (11.4)
Multiracial		6 (5.2)		6 (3.1)
Black/African Ancestry		1 (0.9)		6 (3.1)
South Asian/Asian Indian, Hawaiian/Pacific Islander, Middle Eastern/North African, or American Indian or Alaska Native		7 (6.0)		8 (4.1)
Ethnicity	108		180
Hispanic (Latino/a/x)		24 (22.2)		45 (25)
Non-Hispanic		84 (77.8)		135 (75)
Role	118		206
Patient		38 (32.2)		69 (33.5)
Patient Diagnosis	38		69
Cancer		27 (71.1)		51 (73.9)
Other		7 (18.4)		11 (15.9)
Dementia, Heart disease, Lung disease, or Kidney disease		4 (10.5)		7 (10.1)
Caregiver		17 (14.4)		33 (16.1)
Dx of Pt Caregiving for	17		33
Dementia		9 (52.9)		14 (42.4)
Cancer		5 (29.4)		8 (24.2)
Other		0 (0)		5 (15.2)
Heart disease, Lung disease, or Kidney disease		3 (17.6)		6 (18.2)
Interested in Topic (not pt/cg)		28 (23.7)		58 (28.2)
Healthcare provider		21 (17.8)		30 (14.6)
Other		14 (11.9)		16 (7.8)
ECOG (Eastern Cooperative Oncology Group) Performance Status (Self of family member)
Patient	38		69
ECOG 0–1		31 (81.6)		55 (79.7)
ECOG 2–4		7 (18.4)		14 (20.2)
Pt of Caregiver	17		33
ECOG 0–2		7 (41.2)		16 (48.5)
ECOG 3–4		10 (58.8)		17 (51.5)
Education	117		193
Advanced degree		41 (35)		77 (39.7)
Bachelor’s degree		50 (42.7)		69 (35.8)
Some college		16 (13.7)		26 (13.5)
Vocational/trade/technical school or High school graduate or equivalent or less than high school		10 (8.5)		21 (10.9)
Health Insurance	117		194
Yes		111 (94.9)		182 (93.8)
No or Not Sure		6 (5.1)		12 (6.2)
Insured with Medicaid	111		179
Yes		22 (19.8)		40 (22.3)
No or Not Sure		89 (80.2)		139 (77.7)
Heard of PC	118		205
Yes		99 (83.9)		162 (79)
No or Not Sure		19 (16.1)		43 (21)
Prior PC Visit (Self or family member)	99		162
Yes		33 (33.3)		58 (35.8)
No		55 (55.6)		87 (53.7)
Not sure		11 (11.1)		17 (10.5)
Prior education on PC	99		162
Yes		19 (19.2)		22 (13.6)
No or Not Sure		80 (80.8)		140 (86.4)
	N	Mean (SE)	N	Mean (SE)
PC Knowledge
Score on PaCKs (Range: 0–13)	114	10.6 (0.3)	192	10.6 (0.3)

PC, palliative care; SE, standard error.

Among individuals who completed both pre- and post-session surveys, participants self-identified as patients or persons living with a serious illness (32%, 38/118), caregivers (14%, 17/118), individuals interested in the topic (24%, 28/118), healthcare providers (18%, 21/118), or “other” (12%, 14/118). Most participants who identified as patients had cancer (71%, 27/38). Caregivers most reported caring for individuals with dementia (53%, 9/17) or cancer (29%, 5/17). Most participants had heard of PC (84%, 99/118), and 33% (33/99) of those who had heard of PC reported either having had a visit with PC or having a family member who had a visit with PC.

Fourteen participants completed interviews, which lasted between 5 and 24 minutes (median: 11 minutes). Nearly all interviewees (86%, 12/14) reported being a patient, caregiver, or a combination of both roles. Themes and supporting quotes are shown in Table 3.

Table 3.

Semi-Structured Interview Themes and Quotes

Theme	Sub-Theme	Exemplary quotes
Reason for Attendance	Prior awareness of palliative care and wanting more information	“I was already aware of palliative care myself from supporting a friend who had died…I knew that palliative care was there to help comfort care, to help him be comfortable and improve his quality of life. That’s all I really knew about it. Not that much, but I knew that it was available.” (Learner 12)
	Being a current or former patient or caregiver	“Maybe learn something new since I’m a patient already.” (Learner 12)
	Anticipated future need for palliative care	“I thought I understood what palliative care was, but I learned a lot of what I didn’t know. So, I thought well it’s always good to know in case I need it.” (Learner 11)
	Seeking understanding of the difference between palliative care and hospice	“I really got clear about the distinction between that hospice is within palliative care but hospice does not equal palliative care and palliative care does not necessarily equal hospice. And that, to me, was, feels important. Because for me, just always part of how I make meaning out of what happens to me is by first by knowledge, you know, information and knowledge and experience, share it, sharing that with others when it feels needed or appropriate.” (Learner 10)
Learnings from Session	Palliative care provides more services/support than previously thought	“I found out that there’s help out there for coping with long-term illnesses.” (Learner 6)“I thought I knew more about it than I did. And that was quickly rectified a few minutes in after we started talking. I found out, okay, well, actually, my, my thought is wrong on what this is.” (Learner 11)
	Palliative care is more than end-of-life care/care for the dying	“Being able to talk to somebody about it, put it there with a palliative care doctor, not being afraid that oh my god I’m going to die.” (Learner 2)“I really hope that the information about palliative care, you know, really gets out there, and that more people understand it to be a more than an end of life kind of service, but more a quality of life kind of service. Because, you know, when I’ve, when people have mentioned palliative care before, to me, they always mentioned it as an end of life service.” (Learner 9)
	Palliative care includes caring for caregivers	“I learned that palliative care provides many more services than I thought it did and that they support the caregivers too.” (Learner 5)“Other than knowing that I don’t have to do either myself. I don’t have to go through it myself. That I can get support.” (Learner 7)
	Doctors are involved in the palliative care team	“I realized that palliative care doctors are much more involved in care than I thought they were and how they worked with the primary care doctor.” (Learner 5)
	Affirmed prior knowledge of palliative care	“It repeated what I already knew about palliative care. It supported my interpretation of palliative care.” (Learner 12)
Additional Content Desired	Availability of PC outside of large, academic institutions	“I did bring up questions about if it’s only in Stanford’s system that palliative care is? …Is this a norm for other systems of care?” (Learner 9)
	Describe what the 1^st visit is like	“I would like much more detail of what brings people to palliative care, what happens during the first palliative care visit and really some concrete examples” (Learner 12)
	Provide additional, concrete examples	“Just more case examples. Specifically going through cases because we didn’t really get concrete examples of how it works.” (Learner 12)“Concrete examples about decisions and decisions around diagnostics and testing and treatment. And, you know, some of that was covered, but I wanted examples. Because, I think that really teaches people, for me, it teaches people like, okay, oh yeah, this is how that works.” (Learner 12)
	Further clarifying services provided by PC and hospice	“I guess maybe a little bit of the differentiating between hospice and palliative care because they sound quite similar.” (Learner 14)
Ability to ask for a referral	Able to ask for a referral	“I will be asking her doctor to recommend a palliative care team.” (Learner 7)“I feel very confident that I can go from here saying I went to a seminar put on by Stanford and, you know, the holistic approach of palliative care will certainly help in X situation.” (Learner 7)
Ability to ask for a referral	Able to talk to someone else about PC	“It was great information, and I took notes and able to share all this information with the family.” (Learner 8)
Change in views about own or loved one’s health	Less scared, afraid, or worried about PC	“It really opened my eyes as what palliative care means, because every time they call me in the last month my heart raced because I didn’t know why they were calling me. But now that I know and do understand that my brother is in a delicate situation.” (Learner 3)
	Less worried about the future	“I think I feel in some ways, some sort of comfort knowing this other level of care could be available to me.” (Learner 10)
	Feeling not alone/feeling supported	“If it changes anything, it changed my perspective that I’m alone in this this, because I know I am not and it’s not all up to my husband and close family to support me because they need a break as well.” (Learner 6)

The mean PC knowledge score on the PaCKS increased from 10.6 [standard error (SE) 0.3] to 12.5 (SE 0.1) (range 0–13, p < 0.001). Compared to the presession responses, all but one item on the post-session survey showed statistically significant improvement in the proportion of participants answering correctly (Fig. 1 and Supplementary Data S4). Participants in the semi-structured interviews identified main learnings as recognizing that PC provides more services and support compared to what they thought prior to attending the session. This included learning that PC provides more than end-of-life care, that PC includes caring for caregivers, and that doctors are involved in the PC team. Participants wanted additional content about the availability of PC programs and to hear more about what the first visit with a PC team might be like.

FIG. 1.

Change in knowledge as measured by the Palliative Care Knowledge Scale (PaCKS) questionnaire before (pre) and after (post) a webinar.

Changes in attitudes were statistically significant for each item and primarily reflected shifts from a neutral or somewhat positive attitude to more positive attitudes (Fig. 2). Participants shifted to feeling less unsure and less in agreement that a PC visit would be scary and were in greater agreement that a PC visit would be comforting and helpful. Interviewees described that participation led to feeling less scared, afraid, or worried, and specifically feeling less worried about the future and not feeling alone. Participants shifted to agreeing more strongly that their doctors and loved ones would support them in having a PC visit. Participants demonstrated some of the most positive post-session attitudes for control beliefs, including “I would have a palliative care visit if my doctor recommended it,” “I would have a palliative care visit if I felt it was needed,” and “I can ask my doctor for a referral for a palliative care visit.” Control beliefs were also explored in the semi-structured interviews, and most interviewees expressed that they felt able to ask for a referral to PC for themselves or a loved one after attending the session.

FIG. 2.

Change in Palliative Care Attitudes as measured by a survey based on the theory of planned behavior that was administered before (pre) and after (post) a webinar.

Discussion

This mixed-methods evaluation demonstrates that participation in a 60-minute educational webinar about PC is associated with improved knowledge and attitudes about specialty PC. The greatest improvements in knowledge occurred for the most common misperceptions about PC, including that PC is only for people at the end of life and that PC encourages stopping treatments.^{5,6,8,13,14,24–26} Interviewees corroborated survey findings, describing that they learned that PC offers more services than they previously thought and PC provides more than end-of-life care. Attitudes improved across all domains of the theory of planned behavior with a significant increase in participants disagreeing that a PC visit would be scary, representing improvement in one of the most common negative attitudes linked to patient and provider resistance to PC referrals.^{13,14,24–26} Interviewees corroborated these findings, describing feeling less afraid and less alone after learning about specialty PC, although generalizability of interviews was limited since most interviewees were patients or caregivers.

Compared to the public, our purposive sample had greater awareness, more accurate knowledge, and more positive attitudes about specialty PC before the webinar.^3–5 This is expected as we recruited participants through organizations that primarily serve individuals with greater exposure to and knowledge of health care. Higher levels of awareness and knowledge about PC are anticipated among healthcare workers and have been noted among patients and caregivers, who comprised a majority of the participants in our evaluation.^7,27 Demographic factors such as being female, white, older, or having higher educational attainment correlate to greater awareness and knowledge about PC and reflect the demographics of our sample.^3–5,8 Our sample also reflects individuals who are interested, willing, and able to attend a 60-minute educational webinar about PC, which likely reflects a community distinct from the public. Despite our sample’s baseline awareness, knowledge, and positive attitudes, participation still showed significant improvements in knowledge and attitudes, making our findings encouraging as a “proof-of-concept” that this type of education can be effective in achieving the knowledge and attitude outcomes that could lead to improved timely access to specialty PC, especially among community members engaging in educational content through local CBOs.

Future work will need to explore educational interventions that reach a broader and more culturally diverse population with less baseline awareness and knowledge about PC. These endeavors will likely require unique interventions and utilize tools like social media to reach this population.

Footnotes

Acknowledgments

Claire Bleymaier, Jonathan Briganti, Denise Garlick (Cancer CAREpoint), Morrigan Bruce (Cancer CAREpoint), Claudia Bravo (Cancer CAREpoint), Jeanette Gonalez (Bay Area Cancer Connections), Sally Skidgel (Caltrans), Tina Choi (Travonde), Lynn Chao (Stanford Lung Cancer Support Group), Anjali Kapoor-Davis (ThyCa), Gary Bloom (ThyCa), and Flor Mendez (Vision Y Compromiso).

Funding Information

This work was supported by a Stanford Division of Primary Care and Population Health Seed Grant and an anonymous philanthropic gift.

Author Disclosure Statement

G.M.S., S.M.R.K., A.B., A.C-N., K.T., O.T.N., and L.M.H. received financial support from an anonymous philanthropic gift and an institutional seed grant from the Division of Primary Care and Population Health at the Stanford School of Medicine.

Supplementary Material

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