Patient Perceptions of Specialist Palliative Care Intervention in Surgical Oncology Care

Abstract

Introduction

Surgical oncology patients have a high symptom burden and increased risk of morbidity. The aim of palliative care is to evaluate and treat the patient in a holistic manner focusing on the unique attributes of each patient. This goal-concordant approach could help surgical patients cope with the stress and uncertainty that often accompany serious illness and surgery, improving overall outcomes. This qualitative analysis sought to explore whether unmet specialist palliative care or end-of-life needs exist in this population.

Methods

Qualitative interviews were completed with a subset of participants in a randomized, controlled trial of a specialist palliative care intervention for patients undergoing abdominal oncologic surgery. The interview guide sought to elicit respondents’ perceptions of palliative care and end-of-life needs perioperatively and postoperatively. Recurring themes were identified by two independent coders.

Results

Analysis of 47 interview transcripts revealed few serious concerns about end-of-life issues, however appreciation for the supportive presence offered by palliative care was present. Among participants who received specialist palliative care, many found the intervention helpful, but few were able to articulate issues that the intervention improved.

Conclusion

These findings suggest low levels of unmet palliative care needs among this population, which is consistent with the results of the parent trial. Targeting patients with a higher symptom burden perioperatively may allow for improved symptom management and better adherence to the treatment plan postoperatively, as well as be a more focused use of specialist palliative care clinicians’ efforts.

Keywords

palliative care surgical oncology specialist palliative care end of life symptom management advance care planning

Introduction

Since the 2005 recommendation by the American College of Surgeons to increase the use of palliative care involvement in the care of surgical patients with serious illness, research about the role of primary vs specialty palliative care in the perioperative period has increased.¹ Primary palliative care includes basic symptom management and care decisions for patients with serious illness often provided by the primary medical team, whereas palliative care specialists are trained to manage difficult-to-control symptoms, complicated care decisions, and multifaceted family dynamics, while incorporating emotional and spiritual needs into each individual’s care plan.^2,3

While an interdisciplinary team approach has demonstrated a reduction in postoperative complications among older adult surgical populations, palliative care consultation was notably absent from this team.⁴ Prior research has documented the importance of specialist palliative care for surgical patients, however a standard of when to introduce palliative care has been poorly defined.⁵ Although abdominal surgery for cancer entails high symptom burden and high morbidity and mortality, the benefits of palliative care involvement in these patients has not been fully explored.^5-7 While much of the research has been focused on clinical outcomes, it remains imperative that patients’ experiences are analyzed to better capture the complex needs in this population. This qualitative analysis sought to examine palliative care and end of life needs in surgical patients with and without a specialist palliative care intervention to uncover developing themes and to identify possible unmet needs.

Methods

Participants and Sample Size

Qualitative interviews were conducted with patients participating in the Surgery for Cancer with Option of Palliative Care Expert (SCOPE) Trial.⁸ As previously described, this single-center trial in a large urban setting enrolled 235 patients undergoing non-palliative abdominal surgery for cancer and was approved by our Institutional Review Board.⁹ Participants over the age of 18 who were scheduled for 1 of the following 8 operations were eligible: (1) partial or total gastrectomy, (2) partial hepatectomy, (3) partial or total pancreatectomy, (4) partial or total colectomy or proctectomy, (5) radical cystectomy, (6) pelvic exenteration, (7) cytoreductive surgery after neoadjuvant therapy for ovarian or endometrial cancer, or (8) cytoreductive surgery and hyperthermic intraperitoneal chemotherapy. Enrollees were randomized to either usual care or preoperative and postoperative specialist palliative care intervention. Specialist palliative care intervention included: (1) preoperative consultation with a board-certified palliative care provider, (2) inpatient visits by a specialist provider at least twice a week during the hospitalization, (3) 3 phone calls or visits with specialty palliative care prior to postoperative day 90, and (4) inpatient visit by a palliative care specialist for any hospital readmission.⁸

A subset of participants was offered the opportunity to take part in a qualitative interview during their 1-month trial follow up. Purposive sampling was used to maximize diversity.¹⁰ We stratified patients into 8 groups based on age (younger than 65 vs 65 and older), sex (men vs women) and trial group assignment (intervention vs usual care) and aimed to conduct 6 interviews in each group. Participants were compensated $50 for their time. SPQR Guidelines for qualitative research were followed for analysis and reporting of information garnered during the interviews.¹⁰

Instrument Development

A semi structured interview guide (Appendix 1) was developed based on the surgical and palliative care expertise of the principal investigator of the SCOPE trial and a senior investigator with expertise in qualitative interview design and analysis.⁹ Different questions were included for the intervention and control patients about their understanding and experience with specialist palliative care. Questions exploring supportive care needs during the perioperative and postoperative period were also analyzed and previously reported.⁹

Data Collection and Analysis

Interviews took place by phone in hour-long sessions between July 2019 and September 2021. Participants granted permission for audio recording and professional transcription of the interviews.¹¹ NVivo 12 was used to code and analyze deidentified transcripts using standard methods.¹² The trial’s principal investigator (MCS), who is a surgeon and palliative care physician, and an experienced qualitative researcher (CD) served as coders. Using an inductive, iterative process they reviewed transcripts and developed a code book and independently coded the same transcripts until they consistently reached 80% concurrence in their coding. After this point, 1 reviewer coded each transcript with every eighth transcript coded by both to confirm 80% concurrence was maintained. No a priori conceptual model was used to generate the code book. The team then generated code summaries for each code to serve as the basis for analysis.

Results

Of the 235 total trial participants, 48 patients were interviewed. However, only 47 interviews were transcribed due to a corrupt audio file. Demographics of all trial participants and the subset of those interviewed can be found in Table 1. We report here themes related to end-of-life and impressions of specialist palliative care.

Table 1.

Participant Characteristics.

Characteristic	Interview Participants (n = 47)	Trial Participants (n = 235)
Sex
Male	24 (51%)	141 (60%)
Female	23 (49%)	94 (40%)
Race
White	46 (98%)	224 (95%)
Black	1 (2%)	9 (4%)
Asian	0 (0%)	1 (.4%)
Did not answer	0 (0%)	1 (.4%)
Hispanic Ethnicity	0 (0%)	2 (.9%)
Median age (Interquartile Range)	64.0 (56.0-70.5)	65.0 (56.8-71.1)
Education Level	10 (21%)	55 (23%)
High School or less College	29 (62%)	145 (62%)
Graduate degree	8 (17%)	34 (14%)
Did not answer	0 (0%)	1 (.4%)
Yearly household Income
Less than $50,000	13 (28%)	71 (30%)
$50,000-$99,999	13 (28%)	79 (34%)
$100,000 or more	14 (30%)	66 (28%)
Did not answer	7 (15%)	19 (8%)
Treatment group assignment
Usual care	21 (45%)	118 (50%)
Intervention (specialist palliative care)	26 (55%)	117 (50%)
Operation
Abdominal debulking	6 (13%)	10 (4%)
Colectomy/Proctectomy	4 (9%)	22 (9%)
Colectomy and partial hepatectomy	1 (2%)	5 (2%)
CRS/HIPEC	9 (19%)	28 (12%)
Partial or total pancreatectomy	6 (13%)	36 (15%)
Partial or total gastrectomy	4 (9%)	14 (6%)
Partial hepatectomy	5 (11%)	31 (13%)
Radical cystectomy	12 (26%)	87 (37%)
Pelvic exenteration	0 (0%)	2 (1%)
Clavien-dindo Class III or IV complication within 30 Days	5 (11%)	27 (11%)

CRS = cytoreductive surgery; HIPEC = hyperthermic intraperitoneal chemotherapy.

Percentages may not sum to 100% due to rounding.

Impressions of Specialist Palliative Care

Usual Care Group

Themes that emerged from usual care patients’ discussion of palliative care are given in Table 2 along with illustrative quotations. When interviewees were asked about prior knowledge of palliative care, many were not familiar with the term “palliative care.” Of the participants who did know the term, many associated it with pain management and comfort. Numerous participants discussed remaining free from pain and choosing what interventions would be a part of their medical care moving forward. “That’s basically the way I thought of palliative care. It’s if you really don’t want to go through surgery or tests or any of the stuff, then find somebody who will make you comfortable” (12C).

Table 2.

Usual Care Group Impressions of Specialist Palliative Care.

Theme	Illustrative Quotations
No knowledge of palliative care	I Am not even sure what that is, so nothing comes to mind. (39C)
Pain management	Let me live day to day without pain. (07C) Palliative care to me now means, yes, pain control is very important. Pain management rather but also somebody who can help you with the anxiety, the stress, and who can get you what you need. (12C)
End of life care	If my cancer comes back and they can’t do anything about it, I just don’t want my family having to make hard decisions and decisions that they might feel guilty about. (09C) Well, to me, palliative care is end of life. [My friend] was in a lot of hospice in-patient unit and was able to have her family and grandkids with her, and I just thought that was a very peaceful way to make a transition. (36C) End of life care. I Have worked in the hospital for 40 years and we had a palliative care unit and that’s what that was. So, that’s my perspective. (19C)
Compassionate care	I Would call it compassionate care rather than palliative care because it means you’re being compassionate to the needs of the moment, every single moment… (48C) I Guess somebody just helping you through the process of what to expect. (28C)

Several participants also linked palliative care to end of life care. Interviewees described palliative care as synonymous with hospice care, as a place people go when their life expectancy is limited, and their care needs are great. A few participants also associated palliative care with getting their affairs in order with appropriate documentation so family knew of their wishes should they decline. “If my cancer comes back and they can’t do anything about it, I just don’t want my family having to make hard decisions and decisions that they might feel guilty about” (09C).

Interestingly, a small number of interviewees reported that palliative care should not be considered end of life care, that the support palliative care provides encompasses much more than the final days of life. “I would call it compassionate care rather than palliative care because it means you’re being compassionate to the needs of the moment, every single moment…” (48C).

Intervention Group

Themes emerging from discussion of palliative care with patients in the intervention group, along with illustrative quotations, are given in Table 3. When asked directly about the involvement of palliative care specialists, participants most commonly responded that they had no memory of engaging with palliative care pre- or postoperatively. Participants acknowledged the large volume of providers involved in their care made it challenging to discern palliative care from other disciplines. One interviewee stated, “I’m not real sure right now because at that time, I guess I didn’t recognize which doctor was which. I had too many different” (05P).

Table 3.

Intervention Group Experience With Specialist Palliative Care.

Theme	Illustrative Quotation
Don’t remember palliative care team	I’m not real sure right now because at that time, I guess I didn’t recognize which doctor was which. I Had too many. (05P)
Supportive care	They just wanted to know how it was going. And is there anything effects or anything that they needed to know about or need to check up on me on. Wanted to know how I was doing and if I was doing all right. (08P) I didn’t have anything that they could do for me at the time. I Mentioned my outside and my family support group, I had strong support from family and friends and coworkers. So maybe for people that don’t have those support networks, the palliative would be more helpful. (17P) He really was the 1 that I felt kind of the most comfortable that he was there, and he wasn’t rushed, and I could ask him whatever I wanted to ask him. (44P)
Holistic symptom management	It was more of a just a wonderful doctor. Do you understand what is going on? It seemed like she had a more holistic concern than just the physical side. (6P) …He put things in perspective and made sure that my pain was controlled and he always gave me time to ask questions if I needed anything or if there was anything else that they could do. They’ve been really good in terms of just checking and making sure that I’m doing okay. (40P) And I mean physical, emotional, spiritual, I think I could talk to him about any of that if I had the need. (46P)
Negative Associations	…[I]t made me think more of the mortality of it all instead of the life I had left. It was making me think more death than life. The whole part about dying is not for yourself. You think about your family. I’ll be all right, but I know it’ll be harder on them. (10P)

Several participants recognized the involvement of palliative care but had difficulty recalling specifics about their conversations other than noting the interaction was positive. When patients were able to specify what the palliative care providers did, one major theme that stood out was supportive care. Participants felt supported and listened to by the palliative care providers pre- and postoperatively. “They just wanted to know how it was going. And is there any effects or anything that they needed to know about or need to check up on me on. Wanted to know how I was doing and if I was doing all right” (08P).

Some interviewees described their interaction with palliative care as a holistic approach to symptom control where physical symptoms, emotional distress, and spirituality were addressed in their care. These participants describe the interaction as helpful, expressing appreciation specifically for management of pain and anxiety:

“…He put things in perspective and made sure that my pain was controlled and he always gave me time to ask questions if I needed anything or if there was anything else that they could do. They’ve been really good in terms of just checking and making sure that I’m doing okay” (40P).

“And I mean physical, emotional, spiritual, I think I could talk to him about any of that if I had the need” (46P).

One interviewee reported a negative interaction with palliative care postoperatively. Questions about family coping and advance care planning left the participant feeling hopeless and depressed. “…it made me think more of the mortality of it all instead of the life I had left. It was making me think more death than life.” Questions about the interviewee’s personal coping however evoked feelings of acceptance of death, which the interviewee was not opposed to discussing. “The whole part about dying is not for yourself. You think about your family. I’ll be all right, but I know it’ll be harder on them” (10P).

End of Life

In contrast to the questions on palliative care, which were different for usual care and intervention patients, the same question to elicit end of life concerns was used regardless of treatment group. Themes emerging from these responses are given in Table 4. We did not detect any substantial difference in the patterns of responses about end-of-life concerns between the 2 treatment groups. Most of the interviewees either denied giving any thought to their death or responded that they had considered and accepted the possibility of dying but did not dwell on it. One such participant said, “I don’t want to die. But I’m fine [if I do]” (9C). Many couched their acceptance in religious terms: “If God decided to take me home to heaven then so be it” (23P). Another common response was to talk about getting affairs in order, including making funeral arrangements, preparing a will, and making financial plans for their survivors. Many of the participants talked about how making these preparations gave them a sense of control and helped reduce anxiety: “Actually, I find making those preparations helps a lot…It relieves the anxiety of it all tremendously” (28C).

Table 4.

End of Life Concerns (Both Intervention and Usual Care Group).

Theme	Illustrative Quotations
No thought to end of life	I don’t want to die. But I’m fine [if I do]. (9C) I figure if I have a recurrence and depending on the severity of the recurrence that may come up, or I may think about it more, but as of right now, yeah, I don’t really think about it. (40P)
Acceptance	If God decided to take me home to heaven then so be it. (23P) So I’m not worried about dying because I know where I’ll go. My heart is clear and I’ve done my things in this world. So if the good Lord wants me to live and be here, I’m going to be. (25C)
Affairs in order	Actually, I find making those preparations helps a lot. This may sound silly but actually, I’m doing a PowerPoint for my kids and my ex-wife of what my last wishes are, and how for them to access my 401(k) and my Roth IRA, my life insurance, and who to contact, and who’s going to need a death certificate. (28C) With my lawyer I have drawn up my doable power of attorney. I’ve got all that in order. (26C) I’ve got a will, I’ve got a medical determination. (7C)
Fear of dying	In terms of me being concerned about wasting away on a bed or how I would die or…I didn’t really spend a lot of time thinking about that. I Just really was more concerned about who was going to be a role model for my kids more so than how the process would play out” (34P) [A]Nytime a new sickness occurs or new pain, I think it’s going to be a constant thing of has the cancer come back? How much longer do I have? I don’t know if I’ll ever get over that fear…I had a lot of fear of death. There was nights I wouldn’t go to sleep after my surgery because I was like, no, I’m scared I’m not going to wake up in the morning. I Had a lot of anxiety. (47C).

In the context of getting affairs in order, several interviewees talked about ensuring they had a durable power of attorney, living will, or other advance directive in place. Preparing advance directives were for most participants the only mention of advance care planning. Only a few participants reported thinking about how they wanted to die or making plans for their care at the end of life beyond writing an advance directive.

Very few interviewees reported worrying about or fearing their death. Of those who expressed worries, most of the worry was centered on what would happen to their family members once they died, rather than on the dying process or any existential distress about their own mortality. As one participant put it, “In terms of me being concerned about wasting away on a bed or how I would die or…I didn’t really spend a lot of time thinking about that. I just really was more concerned about who was going to be a role model for my kids more so than how the process would play out” (34P). Nevertheless, one participant did speak in depth about experiencing fears of death and dying: “anytime a new sickness occurs or new pain, I think it’s going to be a constant thing of has the cancer come back? How much longer do I have? I don’t know if I’ll ever get over that fear…I had a lot of fear of death. There was nights I wouldn’t go to sleep after my surgery because I was like, no, I’m scared I’m not going to wake up in the morning. I had a lot of anxiety” (47C).

Discussion

These qualitative data collected from a sub-group of patients enrolled in a larger randomized clinical trial of specialist palliative care for surgical patients provide nuance and insight into the results of the parent trial. The SCOPE Trial found no improvement in quality of life for intervention patients compared to control patients, and another similar trial of perioperative specialist palliative care also failed to demonstrate a benefit from the intervention.¹³ These qualitative data demonstrate that most intervention group patients did not specifically remember what the palliative care specialists did for them, suggesting that for the most part these patients did not have needs that would make the care received from palliative care specialists salient. Moreover, the widespread lack of concern with end-of-life issues suggests that patients felt a strong need for advance care planning or assistance with medical decision making, which are 2 of the ways palliative care specialists can assist patients.

The qualitative data also offer some guidance on how specialist palliative care might be helpful to surgical patients. In the intervention group, participants who did remember the palliative care team described them as a supportive presence, a team they could count on to address their needs and ensure their wellbeing. Interview participants in the intervention group collectively appreciated the positive presence palliative care offered even though many were unable to recall specific details about the conversations. This is consistent with other findings of the benefits of specialist palliative care support in surgical patients care where often patients describe a non-specific improvement in symptoms and care, while finding it difficult to articulate the value of these interactions.^6,14 These results suggest patients may appreciate and value the support of specialist palliative care even if it does not measurably improve patient reported outcomes.

Some intervention group participants did identify specialist palliative care as beneficial in symptom management, especially with respect to pain. Patients facing oncologic surgery often experience a host of complex symptoms perioperatively because of cancer burden and pre-surgical neoadjuvant treatments. Multiple studies have shown improvement in cancer-related symptoms improves quality of life and reduces morbidity in oncology patients^1,15,16. Targeting patients with a higher symptom burden pre-surgery may allow for improved symptom management and better adherence to the treatment plan post-surgery, while also improving surgical outcomes.

Most patients reported no serious concerns about end-of-life, and of those that did, the biggest concern was with making financial arrangements for their families. In our interviews, patients were concerned with getting their affairs in order and how the possibility of mortality may affect their family. Taken as a whole, these responses do not suggest a large unmet need for supportive care directed toward end-of-life issues for these patients. The responses do not suggest a widespread appetite for more in-depth advance care planning or for counseling about the dying process. However, a few patients did express serious fears or worries about dying, with 1 describing severe, persistent anxiety that affected recovery from surgery. Previous studies have shown improvement in mood and psychosocial support when specialty palliative care is involved.^7,14,15 Identifying patients with significant anxiety and working to address their concerns may improve their treatment and survivorship experiences.

Limitations in this qualitative analysis include the lack of generalizability in a small, relatively homogenous sample. The concerns of a more diverse population may not be adequately represented as this sample has a disproportionate number of non-Hispanic whites with degrees in higher education. Furthermore, this study failed to delineate variances in palliative care engagement before and after surgery, potentially missing an opportunity to identify a subgroup of patiens who might have gained from specialized palliative care support. Even so, this qualitative analysis provides insights into how patients perceive palliative care, and the role specialist palliative care may play in supporting surgical oncology patients in the future.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Cancer Institute (K12CA090625), the National Institute on Aging (R03AG060085, K76AG068436), and the National Center for Advancing Translational Sciences (UL1TR000445).

Disclaimer

The views expressed in this article are those of the authors and contributors and do not necessarily reflect those of Johns Hopkins University or any other organization to which the authors are affiliated.

ORCID iD

Molly T. Williams

Palliative Care_Abdominal Surgery Patient Interview Guide

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