Abstract
Context:
Palliative care is guideline-recommended for patients with advanced heart failure (HF). However, studies on how cardiac palliative care is provided in the United States (US) are lacking.
Objective:
To study how cardiac palliative care programs provide services, and to identify challenges and facilitators they encountered in program development.
Methods:
In this qualitative descriptive study, we used purposive and snowball sampling approaches to identify cardiac palliative care program leaders across the US, administered a survey and conducted semi-structured interviews. Interview transcripts were coded and evaluated using thematic analysis.
Results:
While cardiac palliative care programs vary in their organizational setup, they all provide comprehensive interdisciplinary palliative care services, ideally across the care continuum. They predominantly serve HF patients who are evaluated for advanced therapies, or have complex needs. The challenges which cardiac palliative care programs face include reaching those cardiac patients who need palliative care the most and collaborating with cardiologists who do not see value added from palliative care for their patients. Facilitators of cardiac palliative care program development include building personal relationships with cardiology providers, proactively assessing local institution needs, and tailoring palliative care services to meet patient and provider needs.
Conclusion:
Cardiac palliative care programs vary in their organizational setup, but provide similar services and face similar challenges. The challenges and facilitators we identified can inform the development of future cardiac palliative care programs.
Keywords: palliative care, heart failure, cardiac palliative care, challenges, facilitators
1. Introduction
Palliative care is increasingly recognized as an essential component of heart failure (HF) care. Because patients with HF experience uncontrolled symptoms, unmet psychosocial needs and face complex decisions, palliative care has substantial potential to alleviate suffering and improve quality of life in this patient population.1 Accordingly, United States (U.S.) and European HF guidelines unanimously recommend the integration of palliative care into routine HF care and recently, criteria for the referral to specialty palliative care have been proposed.2–4
Numerous palliative care interventions for patients with HF have been developed and tested in clinical trial settings,5–9 yet how palliative care can be best implemented into everyday clinical practice remains a question of debate. Some authors have shared single-center experiences and have proposed a variety of care delivery models.10,11 However, to date there are no dedicated studies investigating the real implementation of palliative care for patients with heart disease, even though they could inform the development of new cardiac palliative care programs.
In this qualitative descriptive interview study, we sought to gain deeper understanding of specialized programs in the U.S. delivering palliative care to patients with heart disease. More specifically, we sought to describe the services they provide, and to identify challenges and facilitators they encountered building a cardiac palliative care program.
2. Methods
This was a qualitative descriptive study of cardiac palliative care programs in the U.S.12 The study was approved by the Institutional Review Board at University of Pittsburgh and all participants provided consent to participate.
2.1. Study Participants
Study participants were program leaders of cardiac palliative care programs based in the U.S. Cardiac palliative care program was defined broadly as any continuous, organized effort to provide specialty palliative care for predominantly, but not exclusively, patients with heart diseases. We did not prespecify a minimum volume of referrals or a minimum number of providers to qualify as a cardiac palliative care program to include small and nascent as well as established larger programs. Program leader was defined as any clinician (i.e., physician or nurse practitioner) mainly responsible for the cardiac palliative care program.
We used a snowball sampling strategy to purposively recruit leaders of all cardiac palliative programs the study team was aware of and could identify using online search methods. Study participants were asked to refer the study team to other cardiac palliative care programs of which they were aware. The sample size resulted from pragmatically including as many programs as possible during the study time frame. Study participants were approached via email and invited to participate both in an online survey and in an interview.
2.2. Data Collection: Online Survey
To gather basic information on participating cardiac palliative care programs, we used an online survey (Supplementary Appendix 1) hosted by Qualtrics (Qualtrics Co., Seattle, WA). Participants provided electronic consent to study participation. The online survey was adapted from the survey used in a previous study, which investigated nascent palliative care clinics,13 and queried study participants about the organizational and medical aspects of their cardiac palliative program. Survey data is presented as number (percentage) for categorical variables, and median (minimum – maximum) for numerical data. We only included surveys that were answered completely.
2.3. Data Collection: Semi-Structured Interviews
All interviews were conducted in 2019 via telephone in one session by one investigator (A.B.) who was not acquainted with the interviewees previously. All participants provided verbal consent to recording. Interviews were semi-structured and based on an interview guide (Supplementary Appendix 2) which was collaboratively developed by the interdisciplinary research team and focused on the organizational structure of the program, the development of the program, the patient population served, challenges and facilitators. The interview guide was pilot-tested for face validity and revised based on the feedback from providers. Interviews lasted approximately 20–45 minutes, were audio recorded and transcribed by Thelai transcription services (Landmark Associates, Inc, Phoenix, AZ).
2.4. Qualitative Data Analysis
After all interviews were completed, we analyzed the interview transcripts using thematic analysis which is a widely used qualitative research approach that searches for themes (i.e., patterns of meaning) among codes that are assigned to qualitative material.14 After familiarization with the interview transcripts, inductive coding was performed independently by M.Bl. (MD, clinical research scholar, male) and A.B. (DNP, PhD student, female) using NVivo Version 12 (QSR International Pty Ltd., Burlington, MA). Codes were collated into themes and discussed in triangulation within the research team. Emerging themes were critically reviewed against coded data abstracts, and clustered into themes and subthemes. The study team members who performed interviews, coding and thematic analysis (A.B., M.Bl.) were trained in qualitative research methods, and closely supervised by researchers with extensive experience in qualitative research (M.Ba. D.K., L.P.G.). Qualitative findings are reported according to the Consolidated criteria for reporting qualitative research (COREQ).15
3. Results
Ten program leaders agreed to participate in the study and participated in the interview. However, only 7 completed the quantitative online survey on program characteristics. The qualitative analysis is based on all available interviews (n=10) and the quantitative analysis of survey responses is based on all available online surveys (n=7).
3.1. Program Characteristics
Program characteristics of the participating cardiac palliative care programs, as indicated in the quantitative survey, are detailed in Table 1. The programs had varying degrees of experience ranging from 1 to 12 years in practice (median 4 years). Five programs (71%) provided both inpatient and outpatient services, 2 programs (29%) provided only inpatient services, 1 program provided only outpatient services (14%). Home-based services were offered by 2 programs (29%). The median annual volume of new referrals was 150 [range 20–300] inpatient referrals and 40 [range 30–400] outpatient referrals.
Table 1.
Program Characteristics of Cardiac Palliative Care Programs
| Total: n = 7 | |
|---|---|
| Years since inception | 4 [1–12] |
| Organizational structure – no (%) | |
| Hospital system | 5/7 (86) |
| Integrated health-system | 1/7 (14) |
| Group practice | 1/7 (14) |
| Physical location within hospital system – no (%) | |
| Within cardiology division | 2/5 (40) |
| Within palliative care division | 2/5 (40) |
| Within ambulatory clinic division | 1/5 (20) |
| Services offered– no (%) | |
| Inpatient services | 6/7 (86) |
| Outpatient services | 5/7 (71) |
| Home-based services | 2/7 (29) |
| Annual volume of new referrals | |
| Inpatients | 150 (20–300) |
| Outpatients | 40 (30–400) |
| Percentage of patients seen for follow-up visits - % | |
| Inpatients | 50 [0–90] |
| Outpatients | 70 [0–85] |
| Proportion of sources for referral to cardiac palliative care – % | |
| Cardiology | 80 [25–100] |
| Inpatient palliative care | 7.5 [0–30] |
| Inpatient hospitalist | 5 [0–35] |
| Primary care clinicians | 2.5 [0–13] |
| Patients and/or families | 0 [0–10] |
| Heart failure navigator nurses | 0 [0–10] |
| Use of triggers for referral – % | |
| Prognostic triggers | 1/7 (14) |
| Treatment-based triggers | 1/7 (14) |
| Details on Outpatient Services | Total: n=5 |
| Number of half-days on which services are provided per week | 1.5 [1–10] |
| Number of billing providers present | 1 [1–2] |
| Number of exam rooms available | 1 [1–2] |
| Time allocated to new referral – min | 60 [45–60] |
| Time allocated to follow-up visit – min | 30 [30–60] |
Program characteristics were estimated by program leaders in an online survey. Categorical variables are presented as number (percentage). Numeric variables are presented as median [range from minimum to maximum].
Details on the patient population served by the seven cardiac palliative care programs are presented in Table 2. Patients were estimated to be predominantly in New York Heart Association (NYHA) Class III (40%) or NYHA Class IV (60%). The proportion of treated patients who had a left ventricular assist device (LVAD) implanted varied widely between programs, ranging from 1% to 100%. In addition to HF, most programs also treated patients with additional cardiac or non-cardiac conditions (e.g., aortic stenosis, pulmonary hypertension, or chronic obstructive pulmonary disease).
Table 2.
Characteristics of Patients served by Cardiac Palliative Care Program
| Variable | Total (n=7) |
|---|---|
| Diagnoses managed – no (%) | |
| Heart failure | 7/7 (100) |
| Heart transplants | 6/7 (86) |
| Aortic stenosis | 3/7 (43) |
| Pulmonary arterial hypertension | 4/7 (57) |
| Lung transplants | 3/7 (43) |
| Chronic obstructive pulmonary disease | 5/7 (71) |
| Interstitial lung disease | 4/7 (57) |
| Cystic fibrosis | 2/7 (29) |
| Chronic kidney disease | 3/7 (43) |
| Dementia | 4/7 (57) |
| Other | 1/7 (14) |
| Average NYHA Class of HF patients | |
| III | 2/5 (40) |
| IV | 3/5 (60) |
| Proportion of LVAD recipients – % | 15 [1–100] |
| Proportion of patients cared for until the time of death – % | 50 [10–50] |
| Proportion of patients referred to hospice – % | 25 [10–40] |
| Proportion of patients dying in hospital – % | 30 [20–50] |
Program characteristics were estimated by program leaders in an online survey. Categorical variables are presented as number (percentage). Numeric variables are presented as median [range from minimum to maximum]. Abbreviations: HF, heart failure; LVAD, left ventricular assist device; NYHA, New York Heart Association.
3.2. How Cardiac Palliative Care is Provided
Theme: Comprehensive interdisciplinary services
Themes and subthemes which emerged during the analysis of interview transcripts are illustrated in Figure 1. While cardiac palliative care programs were overwhelmingly aligned regarding the palliative care services they provide, every program was unique in its organizational setup, the specific makeup of the patient population it was serving, local referral practices and the impetus and development behind the program. While some programs were run by individual physicians, working with an interdisciplinary team including nurses, social workers, and physician assistants were cited as a gold-standard by most.
Figure 1. Program features, challenges and facilitators for cardiac palliative care programs – themes and subthemes.
Abbreviations: AS, aortic stenosis; COPD, chronic obstructive pulmonary disease; LVAD, left ventricular assist device; PC, palliative care; PH, pulmonary hypertension; Tx, transplantation.
Cardiac palliative care providers tailored their services to the patients’ needs. Generally, they discussed a patient’s life situation, hopes, sorrows, values and goals, facilitated deeper illness understanding, talked about prognosis and the end-of-life, discussed advance directives, and explained the role of palliative care in their care. They also managed symptoms, provided self-care education, psychological, social, and spiritual support including for caregivers.
Theme: Services across the continuum of care
Inpatient services were provided by an interdisciplinary cardiac palliative care consult team, or by embedded palliative care clinicians within advanced HF service teams. Outpatient services consisted of specialty palliative care clinic service, ideally provided in physical proximity or in conjunction with a HF clinic. Home-based specialty palliative care services were offered to homebound patients, and often included telehealth technology. Program leaders highlighted the importance of delivering continuous care longitudinally and across different care settings.
Theme: A mixed patient population
On the one hand, cardiac palliative care programs provided palliative care consultations to patients who are being evaluated for or have received left ventricular assist device (LVAD) therapy or heart transplantation. In fact, many program leaders referenced the Joint Commission and CMS mandate that all destination-therapy LVAD candidates receive a palliative care consultation during evaluation as a pivotal impetus for the creation of cardiac palliative care programs.16,17 On the other hand, cardiac palliative care programs provided services to complex HF patients who were not candidates for advanced therapies, yet have advanced HF, complicated hospitalizations, uncontrolled symptoms, challenging discharge needs, and unclarified goals of care. In fact, some programs used pre-specified symptom-based or treatment-based triggers to initiate palliative care referral for patients with unmet needs.
3.3. Challenges for Cardiac Palliative Care Programs
Theme: Reaching more patients who need palliative care the most
Cardiac palliative care program leaders acknowledged that patients who receive specialty advanced HF therapies, particularly LVADs and cardiac transplantation, are overrepresented in the patient population they serve:
“There’s all this focus on VAD, and there’s all this focus on advanced heart failure, but that’s such a small slice of the pie. I feel like the VAD consults, sometimes I think I add value when I help, but a lot of times I’m just checking a box for somebody” (MD, palliative medicine specialist, academic teaching hospital, California)
In contrast, many program leaders described that they have difficulties reaching the majority of HF patients who suffer from severe advanced HF but are not candidates for advanced therapies.
“When you look at the numbers about all the people dying of heart failure, who need care for heart failure, they’re really talking about elderly people with comorbid illness who have diastolic heart failure, who never get within several hundred miles of the advanced heart failure center. […] I’ve always struggled with how do we reach those patients? ‘Cause that’s the bulk” (MD, palliative medicine specialist, academic teaching hospital, California)
Theme: Cardiologists may not see the possible value of palliative care
Cardiac palliative care providers endorsed experiencing ambiguous attitudes towards palliative care from cardiologists. While some still faced reluctance and misconceptions, others experienced shared understanding and support. Yet, changing behavioral patterns remained challenging for most:
“I think a lot of our cardiologists—I guess we’re pretty lucky to be in a pretty progressive place where they do understand the value of palliative care and they have seen the data in their meetings. It’s not a hard sell. It’s more just about—it’s not a big educational gap. It’s just more of really integrating it into their practice patterns and changing their behavior.” (MD, palliative medicine specialist, academic teaching hospital, California)
An important barrier to better cooperation with cardiologists appeared to be a lack of understanding of the added value that palliative care can offer for their patients.
“I think that mostly our cardiology colleagues can’t imagine how we would be helpful, until they’re at a point with patients where there’s a lot of despair, or suffering towards the very end of life. It’s not that they think we’re hospice, it’s just that I don’t think they can really imagine how we would be helpful, why another consultant at the table would be helpful in this zone.” (MD, palliative medicine specialist, academic teaching hospital, Massachusetts)
3.4. Facilitators for Cardiac Palliative Care Programs
Theme: Proactively assessing how palliative care can be helpful for health systems
Program leaders highlighted that it is critical to tailor a cardiac palliative care program to the needs of their cardiology counterparts and other stakeholders, including hospital administrators and hospital leadership, to be successful.
“Definitely listen to the referral sources, and do the needs assessment from the cardiologist about their needs. That includes nurse practitioners and nurses on the units, not just the docs. [..] I believe in order to sell it to the administration—that’s another group, the funders — the way to sell it is find out what their needs are, what’s keepin’ them awake at night. Are they mostly concerned about readmissions, cost, access, intensive care unit length of stay?” (MD, palliative medicine specialist, academic teaching hospital, Alabama)
Theme: Building strong relationships to facilitate sustainable cooperation
As a major key to setting up a successful cardiac palliative care program, the importance of actively building strategic relationships with referrers and collaborators in cardiology departments was highlighted in all interviews. Program leaders shared how much time and effort they invested to meet with cardiology clinicians to get to know them, listen to them and learn about their needs.
“I just did a lot of one-on-one relationship building. When I started my program […] I met with all the cardiologists and asked them what was most challenging with their patients and how we could help. I also met in the clinic with the nurses. […] I met with all of them.” (MD, palliative medicine specialist, academic teaching hospital, California)
According to the program leaders, cardiology clinicians needed to be reassured about the commitment and knowledge of their palliative care counterparts.
“They just need us to be able to show that we’re really in it for their patients, and really in it to support the work that theyꞌre doing. […] To prove that we care about patients, we know the patients. That we weren’t coming in some kind of pedantic way, and also, I would say to prove some of our knowledge about the trajectory itself.” (MD, palliative medicine specialist, academic teaching hospital, Massachusetts)
Through relationships and physically being present, palliative care providers were confident they could educate and change attitudes:
“We’ve learned that this work is so relationship-based and that with relationships over time with the teams over there, we’ve been able to shift culture and raise the bar.” (MD, palliative medicine specialist, academic teaching hospital, Massachusetts)
Theme: How palliative care adds value for cardiac patients
As discussed earlier, a major challenge for nascent cardiac palliative care programs was that cardiology clinicians may not see the value of palliative care for their patients. Consequently, clarifying how palliative care can add value to the care of cardiac patients seems instrumental. Program leaders were vocal about how palliative care can add value by addressing the unmet needs of cardiac patients. They also argued that the efficacy of palliative care is backed by evidence.
“I would say that there’s a ton of research showing palliative care needs among this patient population. There’s also research showing that specialist palliative care can improve outcomes in people. With, particularly, heart failure. I think that research also provides a good justification for this service.” (MD, palliative medicine specialist, Colorado )
In addition, palliative care adds value by supporting cardiology clinicians who are often challenged by patients with complex needs.
“They were the sickest of the sick. They were the really complex, where I think the cardiology teams felt like they needed an extra layer of support.” (MD, palliative medicine specialist, academic teaching hospital, Alabama)
In the light of persistent misconceptions regarding the scope and nature of palliative care, ongoing outreach to improve knowledge and understanding of coworkers and early career professionals is necessary.
“Even our greatest supporters still get us involved late in the game. So, I think it’s a constant sort of reeducation and then, of course, the teams expand, people come from other institutions, who may not have the same degree of palliative care involvement. So, I think it’s a constant—constantly reeducating and dispelling myths.” (MD, palliative medicine specialist, academic teaching hospital, New York)
4. Discussion
In this study of ten cardiac palliative care programs, we characterized the typical setup of those programs, what patients they served and what services they provided. We then examined the challenges and barriers they encounter and how they were able to overcome them.
Numerous clinical trials have tested palliative care interventions in research settings across disease populations,5–9 but how these trial findings can be effectively implemented in clinical practice has not been addressed yet. International guidelines unequivocally recommend palliative care for patients with HF,2,3 but what the optimal care delivery model for this population is, remains an open question. In a recent study, Chuzi et al. surveyed members of the Heart Failure Society of America on the integration of palliative care at their institutions. They found substantial variety between centers, pointed out the lack of national standards and called for more evidence to determine best practices in the future.18 Our study provides in-depth insights into the real-world experiences of nascent and established cardiac palliative programs and offers some points of orientation in a largely uncharted territory.
Previous quantitative and qualitative studies already examined the attitudes of non-palliative care providers, and documented a lack of knowledge and misconceptions about content and capabilities of palliative care and reluctance to deal with death and dying among cardiology providers.19–21 While our findings are consistent with previous observations, they go one step further and point towards possible solutions: even cardiology clinicians, who know about palliative care and are in theory not opposed to collaboration with palliative care, often just don’t see how palliative care can add value to cardiac care. Thus, tailoring programs to patients’ and clinicians’ needs and highlighting how palliative care can add value to HF care is an essential step in establishing collaboration between departments and stakeholders.
Previous authors have discussed the importance of relationships for successful collaboration.10,19 In this study, cardiac palliative care providers shared details on how they build relationships through one-on-one conversations, what mindset their cardiology counterparts expect from them and how they have been teaching and changing culture through strategic relationships.
On a side note, in our quantitative survey we found that virtually no referrals to cardiac palliative care programs were initiated based on patient or caregiver request. This observation is in line with previous evidence that patients with advanced heart disease and their caregivers are largely unaware of palliative care as an additional layer of support which is available to them.22,23 Consequently, educational outreach efforts should aim beyond medical providers to include patients, their caregivers and ideally also the public in order to increase awareness for palliative care as a part of quality care for patients with heart disease.
Taken together, our findings offer a set of multifaceted strategies that can help facilitate the creation of cardiac palliative programs in the future: Building relationships across departments, assessing the needs of stakeholders within the cardiology department, tailoring services to real needs, and based on all of the above, making a strong case for how palliative care can add value to HF management. Additional strategies for success, which have been brought up previously, include defining metrics to track collaboration and prespecifying measurable goals, as well as educating palliative care providers better on the special qualities of HF pathophysiology, therapy and symptomatology.24 All in all, we believe that if put into practice thoughtfully, these approaches offer substantial potential for better collaboration and integration of palliative and cardiac care.
Some limitations of this study must be addressed. First, we intentionally interviewed a sample of highly specialized, and innovative programs, to study their unique experiences and disseminate their success stories, and asked them to forward our study information to other specialized programs in a second snowball sampling step. This approach makes it difficult for us to retrace how many potential candidates received the study information, and thus to calculate a precise study response rate. Participating programs were predominantly based at quaternary academic medical centers on the U.S. East and West Coast, and therefore their experiences might not be generalizable to other U.S. or non-U.S. institutions. Despite maximal efforts to recruit as many program leaders as possible, we could only establish contact with ten cardiac palliative care programs. While this sample size is rather small, this reflects of the scarcity of such programs in the U.S. and represents the best available evidence. In addition, the research team agreed that theoretical saturation had been reached because no new codes relevant to the research question emerged during the coding of the last two interview transcripts. Interviewing additional providers in non-leadership positions might have provided additional insights. Furthermore, in the time since data collection (April 2019) programs might have evolved, new cardiac palliative care programs might have been established, and important new recommendations and evidence have emerged.2,3,9,25–27 Lastly, the program characteristics provided in Table 1 and Table 2 were not measured directly, but are best estimates by program leaders. These limitations should be borne in mind when interpreting our findings.
In conclusion, U.S. cardiac palliative care programs, while varied in their organizational characteristics, provide similar services and face similar challenges, namely difficulties reaching cardiac patients who are never referred for specialty advanced HF services, and cardiology clinicians who do not see how palliative care can be helpful to them. Strategies to overcome these barriers include assessing and responding to existing needs, building strong strategic relationships, highlighting how palliative care can add value to cardiac care, and ongoing education of collaborators and young professionals. These insights can inform efforts to establish new cardiac palliative care programs, and thus help meet the substantial unmet needs of patients living with advanced HF and other cardiac diseases.
Supplementary Material
5. Acknowledgements
The authors would like to thank the study participants for their time and effort. In addition, the authors would like to acknowledge Alexander K. Smith for his valuable support in developing the survey and interview guide.
7. Sources of Funding
This work was supported by the Marie L. O’Koren Endowment of the University of Alabama at Birmingham School of Nursing. DK received support from the National Heart Lung and Blood Institute (K01HL133466). LPG received support from the National Institute on Aging (K23AG049930), the Claude D. Pepper Older American Independence Center at the Icahn School of Medicine at Mount Sinai (5P30AG028741), and the Sojourns Scholars Leadership Award from the Cambia Health Foundation.
Footnotes
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Conflict of Interest
All authors report that they have nothing to disclose
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