The Role of Palliative Care in Heart Failure,Part 3: Facilitators and Barriers to Cardiac Palliative Care Clinic Development

Abstract

Background:

Patients with heart failure frequently have significant disease burden and complex psychosocial needs. The integration of palliative care into the management of these patients can decrease symptom burden throughout their course of illness. Therefore, in 2009, we established a cardiac palliative care clinic colocated with heart failure providers in a large academic heart hospital.

Objective:

To better understand the facilitators and barriers to integrating palliative care into our heart failure management service.

Design:

Qualitative study using a semistructured interview guide.

Setting, Subjects:

Between October 2020 and January 2021, we invited all 25 primary cardiac providers at our academic medical center in the midwestern United States to participate in semistructured qualitative interviews to discuss their experiences with the cardiac palliative care clinic.

Measurements:

Interview transcripts were analyzed using a deductive-dominant thematic analysis approach to reveal emerging themes.

Results:

Providers noted that the integration of palliative care into the treatment of patients with heart failure was helped and hindered primarily by issues related to operations and communications. Operational themes about clinic proximity and the use of telehealth as well as communication themes around provider–provider communication and the understanding of palliative care were particularly salient.

Conclusions:

The facilitators and barriers identified have broad applicability that are independent of the etiological nature (e.g., cancer, pulmonary, neurological) of any specialty or palliative care clinic. Moreover, the strategies we used to implement improvements in our clinic may be of benefit to other practice models such as independent and embedded clinics.

Introduction

Patients with heart failure often experience significant disease burden as a result of complex symptoms and unpredictable disease trajectories.¹ Despite previous studies showing positive impacts on patients' quality of life^2–7 and recommendations from the American Heart Association/American Stroke Association,⁸ integration of high-quality palliative care throughout the continuum of heart disease care continues to lag behind that of other specialties (e.g., oncology).⁹ In the seminal Palliative Care in Heart Failure (PAL-HF) study, investigators demonstrated improvements in quality of life, anxiety, spiritual wellbeing, and depression for patients with advanced heart failure versus usual care.⁷ An economic analysis of this same study by Kaufman, et al., suggests this approach is also cost-effective.¹⁰

While cardiac clinicians may endorse the participation of palliative care in the management of patients with heart failure,^11,12 there are many barriers to involving palliative care clinicians in the care of heart failure patients in practice.^11,13–15 Such barriers include limited knowledge about palliative care by both providers^11,12,16 and patients,¹⁴ uncertainty around the timing of palliative care involvement,^11,12 and lack of cooperation between cardiac and palliative care clinicians.^11,12,14 Furthermore, while patients in a nurse-led palliative education study indicated high satisfaction with palliative care,¹⁷ another study showed that patients identified specialist palliative referral triggers that corresponded with late stages of disease.¹⁸

In 2009, we established a cardiac palliative clinic within the Ohio State University Richard M. Ross Heart Hospital, a dedicated heart hospital at a large academic medical center in the Midwestern United States. The clinic includes 5.5 full-time equivalent (FTE) clinicians comprising 1.5 physician FTEs, 2 advanced practice provider FTEs, and 1 social work FTE for inpatients, and 0.5 physician FTE and 0.5 nurse FTE for outpatients. The clinic performs inpatient consultations and holds an outpatient subspecialty clinic for eight full days each month. This established cardiac palliative care clinic now receives 170 new outpatient referrals annually. In this study, we conducted interviews with cardiac care providers asking about facilitators and barriers to integrating palliative care into heart failure management and to identify opportunities for further improvements to care.

Methods

Between October 2020 and January 2021, we invited all 25 primary cardiac providers at the Ohio State University Richard M. Ross Heart Hospital to participate in semistructured qualitative interviews to discuss their experiences with the cardiac palliative care clinic. We also asked them to share their perspectives regarding the involvement of palliative care in heart failure care more broadly. Interviews were conducted through videoconference or telephone and lasted 30 minutes on average (range = 19–38 minutes). All interviews were audiorecorded and transcribed verbatim. The Institutional Review Board at Ohio State University approved this study and all participants provided verbal informed consent before participation.

Data collection

We used a semistructured interview guide (Supplementary Appendix SA1) to frame interviews. Clinicians were asked about their knowledge, skills and attitudes toward palliative care, their use of the cardiac palliative care clinic, and their perspectives on how the clinic has impacted providers as well as patients and their families. We also asked clinicians about the ease or difficulty of referring patients to the cardiac palliative care clinic and any challenges that their patients experienced with the cardiac palliative care clinic.

Data analysis

We evaluated interview transcripts using a deductive-dominant thematic analysis approach^19,20 where we first created a preliminary coding dictionary based on topics covered in the semistructured interview guide. Next, three study team members (T.A.B., S.R.M., J.V.) coded the same two transcripts, discussed their coding decisions, and refined the coding dictionary based on group consensus. Lastly, S.R.M. and J.V. used the revised coding dictionary to code the remaining transcripts, meeting frequently to ensure consistency throughout the analysis process. We used the ATLAS.ti software (ATLAS.ti Scientific Software Development GmbH, Berlin) to facilitate coding and analysis.

Results

Two major themes related to facilitators and barriers to integrating palliative care for patients with heart failure emerged from our interviews. The first theme involved operational aspects of scheduling and referrals. These operational issues were further separated into subthemes concerned with the pros and cons of clinic proximity and telehealth. The second theme involved communication. Communication was parsed into subthemes that were positive (i.e., improved provider–provider communication) and negative (i.e., misunderstanding palliative care and resistance to referrals).

Operational facilitators

We found that many operational aspects of the cardiac palliative care clinic were widely perceived as facilitating palliative care integration. First, study participants reported that the proximity of the clinic was greatly appreciated. One provider explained, “… the fact that we have a clinic that is readily accessible to use for these patients has really helped increase the palliative care with our patients.” Likewise, the ease of scheduling same-day palliative care visits was viewed by many cardiac providers as improving care coordination. One participant shared, “And the thing that's nice about it is we're able to coordinate those clinical appointments almost always on the same days that they're either having their VAD [ventricular assist device] clinic appointment or their heart failure clinic appointment. So, the patient doesn't have to come back twice and have to deal with parking and all that jazz.” Another noted that same-day appointments helped patients to avoid “… driving an hour and a half and paying $20 in parking to come three days in a row … so they can see [the] heart failure physician, see a surgeon, palliative medicine on the same day and [receive] any testing that needs to get done.”

The use of telehealth was seen by cardiac providers as another operational facilitator. As one provider described, “I don't think it needs to be in person. I think especially people that have mobility issues, which is what we're referring them, because of quality [of] life. I think the video is great.” Enabling family conferences by telehealth was seen as particularly helpful. One provider described a situation with an elderly patient whose daughter lived in a distant city: “The daughter wanted to be present for the [palliative care] conversation … so they found a way to do it where the daughter could be on and the [patient] could be in the nursing home still. And it really worked out well and the daughter was really happy.” In addition, telehealth appointments were noted to be especially important throughout the COVID-19 pandemic as they enabled cardiac palliative care consultations and visits to continue taking place despite restrictions on in-person encounters. As one participant recalled, “During parts of COVID, a lot of what [the cardiac palliative care clinic] was doing was virtual. … So that's been a really good way to get around some of the travel issues.”

Operational barriers

Interestingly, although interviewees identified many operational factors that helped facilitate the integration of palliative care with cardiac care, these same factors were also described as barriers. For example, participants pointed out that the proximity of the outpatient cardiac palliative care clinic resulted in less physical space for revenue-generating cardiac care visits. One provider explained, “Clinic limitation as far as space is always an issue and having extra providers in clinics with limited rooms takes away from other providers.” Similarly, the use of telehealth was not without its downside. One provider shared, “I think that technology challenge is there. … It just gets frustrating when you cannot hear or see the video or something. Older people, it's very hard. I will say anybody above 75, it's difficult.”

In addition, in terms of the operational referral and scheduling processes, a few interviewees mentioned these could also be barriers. One cardiac provider reflected, “If there is a downside, it's just that there [are] not enough [palliative care providers]. There's not enough of their time and space for probably the number of patients we could refer to them.” Another participant noted that having multiple appointments on the same day could complicate care coordination: “This ends up being a lot of potentially trying to align all those different things and I think those are more the struggles.”

Communication facilitators

Cardiac providers reported that the proximity of the outpatient cardiac palliative care clinic and the interpersonal relationships developed from working closely with palliative care providers facilitated provider–provider communication. As one provider shared, “So in addition to notes and everything, [the palliative care physicians are] really good about coming in personally and discussing issues with you, and understanding that, you know, we have a mutual plan.” Another provider shared, “The communication's better because both teams are there at the same time and communicate directly with one another. And if the palliative care team member has an issue, the medical team's right there to jump in the room and discuss it with them so it just makes communication [a] whole lot better.”

Communication barriers

On the other hand, cardiac providers cited patient misconceptions and provider resistance as the main communication barriers with regard to the effort to integrate cardiac and palliative care. First, interviewees provided multiple examples of how patients' misunderstanding of the nature of palliative care impeded both conversations and timely referrals. One provider recalled trying to encourage a patient who “took palliative as hospice” to accept a palliative care referral: “[The patient] did end up getting linked to palliative. … His biggest concern was one, he didn't want to feel like everyone's giving up; and two, he wanted to keep seeing us [heart failure clinic]. And I think that a lot of patients fear that they're not going to be able to keep coming to the clinic and we're not going to continue to try to keep them doing as well as we can.” Another provider reflected, “It's always frustrating trying to get the patients to understand what palliative care is, because a lot of the patients feel we're just writing them off [to] like hospice.” Furthermore, cardiac providers described needing more directions to establish clear expectations with their patients about what a referral for palliative care entailed.

As one provider explained, “For some patients, maybe the groundwork wasn't set appropriately or they expected, unfortunately, there's some that expected it to be a pain management clinic, and maybe that is not set up well. … So when a referral is made, making sure that the patient understands what the specific question is.” Another provider shared, “Even though you try to take your time and be clear, still things don't sink in sometimes for a while. So, I think the only other major recourse is just to call the patient up on the phone and have another discussion with them about what this is really all about.”

In addition, study participants shared stories about providers' resistance to referrals. One provider explained, “Sometimes I feel like it's the physician too. I've got some hospitalists who are like, ‘Oh, they don't need palliative. …’ And I don't know if that's because they feel the patient won't be receptive, or they don't understand palliative services.” To a lesser extent, study participants also spoke about simply forgetting about the referral process. As one inpatient cardiac provider shared, “Maybe [palliative care is] underutilized by a lot of providers because we just keep doing our thing and trying to manage the symptoms on our own, and we sometimes forget there is an option for people to be seen on the outpatient side. … There are probably missed opportunities to establish that relationship in the outpatient setting.”

Discussion

While the most effective model for ambulatory palliative care has not been defined, three practice models are commonly discussed: (1) independent clinics, which operate autonomously from the specialty care site and have limited interactions between specialty clinicians and palliative care clinicians; (2) embedded clinics, where a patient stays in one examination room and is subsequently seen by various providers sequentially or simultaneously; and (3) colocated clinics, where the palliative clinic is situated in close proximity to the specialty care clinic, but the palliative clinic maintains its own staff and sees patients separately from the specialty group.²¹ The advantages and disadvantages of free-standing versus embedded clinics have recently been discussed.²² The cardiac palliative care clinic described in our study was established as a colocated clinic alongside a specialty heart failure clinic, and our study identified unique facilitators and barriers associated with this model.

First, proximity and same-day scheduling were viewed as strong facilitators. This is not surprising, given the high prevalence of frailty and poor quality of life in the heart failure population,^23,24 coupled with the average 61-minute travel time to the clinic.²⁵ Patients with heart failure have indicated that having appointments close to home and assistance with transportation are key drivers of adherence to follow-up.²⁶ Few studies have assessed travel time or distance required to receive palliative care. One group reported that 31.5% of patients with advanced cancer traveled more than 60 minutes to receive palliative services,²⁷ and another reported that nearly one-third of patients traveled 50 miles or more to receive palliative chemotherapy for stage IV pancreatic cancer.²⁸ The colocated model of our cardiac palliative care clinic has been able to address these challenges by reducing the number of clinic visits and decreasing the need for patients to physically move from place to place. This has been critical for providing access and easing the overall burden of care for our patients.

In addition, colocation of the palliative clinic allowed palliative care, cardiology, and coordinators to discuss cases in real time to solve complex symptom needs and to establish care plans for socially and medically complex patients. A short walk to have a brief, in-person discussion with the cardiac provider about a new patient could result in a profound understanding of the needs of the care team and eliminate numerous unproductive emails and in-basket bloat. For established patients, a quick huddle to discuss assessments in real time could help with the creation of a coordinated palliative and cardiac care plan. Often a cardiac plan can influence a goals-of-care conversation, and conversely, the assessment of the symptom burden could impact how cardiology manages the patient. Importantly, our study found that the palliative service often admitted cardiac patients to the hospital for evaluation and/or augmentation of their advanced therapies because of timely detection of a change in the patient's functional status or frailty.

However, while colocation provides many benefits for patients, institutions may be reluctant to allocate space in ambulatory settings for palliative care clinics. Palliative clinics provide high value by improving quality of care and reducing cost, but their services are not profitable, per se, and there have not been adequate studies comparing the cost-effectiveness and return on investment for the various clinic models.^22,29 Thus, the feasibility and sustainability of establishing an outpatient palliative care clinic may be difficult for a health system to assess. Our clinic often has access to only a single room, which makes throughput challenging. Furthermore, due to their poor condition, rooming these patients takes longer than in typical clinics. More research is needed to evaluate the economic impact of palliative care in both the inpatient and outpatient settings.³⁰

We additionally found that providers perceived our clinic improved provider–provider communication. Given that lack of cooperation between clinicians is an established barrier to integrating palliative care with cardiac care,^11,12 we specifically designed our cardiac palliative care referral process with this in mind. Efficient outpatient referral workflows have been demonstrated to improve provider–provider communication and patient perceptions of the referral process.³¹ By customizing our outpatient order system to include both cardiac and cancer palliative care options, providers are able to choose the clinic of their choice when placing referrals. This then helps nurses and schedulers to better triage the large volume of referrals promptly and efficiently.

Furthermore, while telehealth was used sporadically in our clinic before the COVID-19 pandemic, it has become a critical modality used to follow-up with patients after starting new medications. We have found it particularly useful when initiating methadone or antidepressants. In these instances, telehealth facilitates timely and important medical assessments while reducing the travel and financial burdens for patients. It also opens up more time in the palliative clinic for new consultations. A recent scientific statement from the Heart Failure Society of America provides many practical examples of how to implement virtual visits in the care of patients with heart failure.³² Despite the potential benefits of using telehealth, there can be both generational³³ and socioeconomic gaps³⁴ in its use. For instance, many elderly patients are reportedly uncomfortable seeing a provider virtually due to privacy concerns,³⁵ and many rural patients do not have access to Wi-Fi or strong cellular signals to enable telehealth video visits.³⁶ Videoconferencing also uses large amounts of data that can be cost prohibitive for patients who do not have unlimited cellular or internet plans.

Finally, consistent with other studies,^37–39 we found that both patients and providers reported that they did not completely understand palliative care. This misunderstanding can contribute to provider resistance to and delays in referring patients to palliative care, as well as patients being reluctant to schedule an initial visit.⁴⁰ In the initial stages of establishing our program, we implemented a training program for the cardiology nursing staff, but gaps in understanding apparently remain.

Several limitations should be considered when interpreting the results of our study. First, our results are based on interviews with providers who have experience with a colocated palliative care clinic model within a single Midwestern academic medical center and therefore may have limited application to other practice models. Additionally, our study involved only cardiac providers. Nonetheless, we feel that the facilitators and barriers we identified have broad applicability that are independent of the etiological nature (e.g., cancer, pulmonary, neurological) of any specialty or palliative care clinic.

Conclusions

We have identified several facilitators and barriers that impact patient care and provider satisfaction in our colocated cardiac palliative care clinic. Although our clinic is focused exclusively on heart failure, we expect that our findings would be relevant to any type of outpatient palliative care clinic, regardless of disease type or clinic model, and it is our hope that others can use these insights as they develop and expand their programs.

Footnotes

Acknowledgments

The authors would like to thank Abigail Petrecca, Matt Rohl, Lauren Schnipke, and Lindsey Sova, all associated with the authors' institution, for their assistance with this study.

Authors' Contributions

All authors contributed to the study design, data analysis, and writing of this article.

Funding Information

No funding was received for this article.

Author Disclosure Statement

T.A.B. is a member of the Finance Committee of the American Academy of Hospice and Palliative Medicine. All other authors have no conflicts of interest to disclose.

Supplementary Material

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Supplementary Material

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