“Palliative Medicine in Myelodysplastic Syndromes: Patients and Caregivers - a qualitative study”

Abstract

Objectives:

Evidence-based guidelines call for integration of palliative care within oncology from diagnosis. Misperceptions about palliative care have impeded implementation. Prior research has not examined perceptions about “palliative care” versus “supportive care” among patients and caregivers to whom this care is introduced routinely as part of comprehensive cancer care. We conducted a qualitative study of patients with Myelodysplastic Syndromes (MDS) and their informal caregivers to elicit perceptions of “palliative care” and “supportive care” before and after they received integrated primary/specialist palliative care from diagnosis.

Methods:

Newly diagnosed MDS patients and caregivers were interviewed about their understanding of “palliative care” and “supportive care” at diagnosis and follow-up. Interviews were audio-recorded, transcribed, and analyzed by an interdisciplinary team.

Results:

Forty-eight interviews were conducted in total, including with 21 patients and 13 caregivers at diagnosis, and 10 patients and 4 caregivers at follow-up. Initially, 28/34 participants (82%) associated “palliative care” with death or fear/alarm. At follow-up, 11/14 participants (79%) recognized that “palliative care” is not only for terminally ill patients, yet 13/14 participants (93%) still felt apprehensive about the term. Initially, 24/34 participants (71%) felt “supportive care” sounded “positive” and 12/14 participants (86%) reported this at follow-up. No participant associated “supportive care” with death or fear/alarm at either time point. Among participants who had a preference, “supportive care” was the preferred term initially and at follow-up.

Conclusions:

MDS patients and caregivers receiving integrated primary/specialist palliative care from diagnosis responded more favorably to and felt less apprehensive about “supportive care,” initially and at follow-up.

INTRODUCTION:

Evidence-based guidelines of the National Comprehensive Cancer Network and the American College of Surgeons Commission on Cancer include palliative care as an integral component of cancer care.^1–2 Although palliative care encompasses symptom management, communication, and care planning throughout illness, and is based on need rather than prognosis, it is often conflated with hospice care. Recent analysis of a national cancer database revealed that 60% of adults self-identifying as knowledgeable about palliative care had at least one misperception about it, including association with end-of-life.³ Since the term “supportive care” may be perceived differently, with clearer distinction from end-of-life or hospice care, this term has replaced “palliative care” to increase acceptability and referrals for consultation.⁴ Yet there are also successful “palliative care” programs and ongoing debate about optimal nomenclature.

The importance of “primary” (versus “specialist”) palliative care, delivered by clinicians (e.g., oncologists) who care for patients with serious and complex illness, is increasingly recognized.⁵ Ideally, primary palliative care is supplemented by specialist palliative care when needed. Our dedicated cancer center has piloted the introduction of palliative care at diagnosis in the outpatient oncology setting.⁶ Within this program, we conducted a qualitative study of patients with Myelodysplastic Syndromes (MDS) and their primary informal caregivers to elicit perceptions of “palliative care” and “supportive care” before and after they received cancer care integrating primary and specialist palliative care starting at diagnosis.

METHODS:

Eligibility.

This study was conducted as a pre-planned component of the “One-Two-Three Project to Advance Palliative Care” at our institution.⁶ While the larger project encompasses adult (≥ 21 years old), English-speaking patients establishing care in one of multiple clinics, this study focused on patients with newly diagnosed, untreated MDS in a single clinic staffed by a primary oncology physician and nurse. We also enrolled patients’ primary informal caregivers (whom patients designated as a primary source of support for healthcare decision-making) accompanying the patient to the clinic visit.

Initial Interview.

Our cancer center’s Institutional Review Board provided a waiver of informed consent for this study, based on minimal risk. A trained interviewer approached eligible patients and caregivers for consent to audio-record a brief initial interview before they met with the oncology team. Based on a written guide, these interviews were conducted in a private clinic room and elicited understanding of “palliative care” and “supportive care” in relation to cancer care.

Introduction to Palliative Care by the Oncology Team.

During the clinical encounter, the oncologist used a written script to define palliative care as “an essential part of comprehensive cancer care, regardless of stage or prognosis.” A palliative care nurse practitioner was introduced as a specialist who would assist the oncology team in responding to palliative care needs throughout the illness.

Follow-up Interview.

Patients returning to the clinic received their oncology care with concurrent palliative care provided by the primary oncology team,⁶ which had discretion to refer for specialist palliative care. At the fifth follow up visit, the interviewer used a written guide to reassess patient and caregiver understanding of “palliative care” and “supportive care.”

Analysis.

Verbatim transcripts of audio-recorded interviews were imported into ATLAS.ti software to facilitate qualitative analysis using the grounded theory method.⁷ An interdisciplinary team of 3 trained coders (supportive care researcher [AVD], oncology clinic nurse [KLA] and behavioral scientist [AH]) reviewed the same subset of 10 transcripts (~20% of the total), including 5 from each time point (initial and follow-up), to develop the initial coding framework. A codebook was iteratively built using an initial line-by-line inductive coding process. This codebook was applied to all transcripts using cycles of coding and constant comparison, with refinement of the codebook to incorporate new insights.⁷ The coding team met regularly for consensus discussions and resolution of discrepancies. Codes identifying common feedback were grouped into categories to identify major themes.⁸ Thematic saturation was achieved.

RESULTS:

All patients and caregivers approached for interviews agreed to participate. We conducted a total of 48 interviews of 21 patients (median age 69) and 13 caregivers (median age 54). A majority of the patients (62%) were male (consistent with expected male predominance in MDS), whereas a majority of the caregivers (85%) were female. Seventy percent of caregivers were spouses and 30% were adult children. Ten patients and 4 caregivers completed follow-up interviews; among these, the median time between initial and follow-up interviews was 81 days (IQR 57, 94). Half of patients completing follow-up interviews had received specialist (as well as primary) palliative care, with a median of 4 visits with the specialist. Interview themes are shown in Table 1.

Table 1.

Patient and Caregiver Interview Themes

Theme	Frequency			Illustrative Passage
Initial Patient and Caregiver Interview Themes	Patients (N=21)	Caregivers (N=13)	All (N=34)
“Palliative Care”
Familiarity
Unfamiliar	12 (57%)	4 (31%)	16 (47%)	“I have no idea” (Patient) “Please define it for me” (Caregiver)
Familiar	9 (43%)	9 (69%)	18 (53%)	“I do work in a hospital so I’ve heard it” (Caregiver) “My hematologist down at Hopkins said we had the transplant and the alternative to the transplant was palliative care” (Patient)
Associations
Fear/Death/End-of-Life	15 (71%)	13 (100%)	28 (82%)	“Palliative makes it sound like you’re in God’s waiting room and who knows what’s next” (Patient) “Frightened … to me, it seems like this is the end of the road” (Caregiver)
Positive/Helpful	6 (29%)	6 (46%)	12 (35%)	“I think of it (palliative care) in a positive sense … trying to make things as comfortable as possible” (Patient)
Concurrent palliative and cancer care	12 (57%)	8 (62%)	20 (59%)	“A person can still receive (cancer) treatment but to help them move through that treatment they may need palliative care” (Patient)
Who Provides
Unsure	11 (52%)	2 (15%)	13 (38%)	“No clue” (Patient)
Anyone treating you	6 (29%)	5 (38%)	11 (32%)	“I think the whole staff provides palliative care. Top to bottom” (Patient)
Primary medical doctor	2 (10%)	2 (15%)	4 (12%)	“Probably his primary care physician” (Caregiver)
Separate specialist team	2 (10%)	4 (31%)	6 (18%)	“I would think that it’s a completely different support staff that’s devoted just to that” (Caregiver)
“Supportive Care”
Associations
Fear/Death/End-of-Life	0 (0%)	0 (0%)	0 (0%)	N/A
Positive/Support	13 (62%)	11 (85%)	24 (71%)	“It (Supportive Care) sounds much more positive!” (Patient) “Supporting you” (Patient)
Theme	Frequency			Illustrative Passage
Follow-Up Patient and Caregiver Interview Themes	Patients (N=10)	Caregivers (N=4)	All (N=14)
“Palliative Care”
Associations
Fear/Death/End-of-life	10 (100%)	3 (75%)	13 (93%)	“End-of-life care” (Patient) “Something good but something that you really never wanna meet up close and personal” (Caregiver) “When you … hear it, it probably scared you a little bit, you know?” (Caregiver)
Positive/Helpful	4 (40%)	4 (100%)	8 (57%)	“It’s a beginning to end process to help you get through the whole disease” (Patient)
Fluidity in Perception
Not only for terminally ill patients	7 (70%)	4 (100%)	11 (79%)	“It’s a process. It’s not just something that occurs at the end of the road” (Caregiver)
Best Way to Introduce
Oncology Team Should Introduce	7 (70%)	4 (100%)	11 (79%)	“I think they should start with the doctor during the initial interview of your case” (Patient)
Receipt of Palliative Care
Unsure	3 (30%)	0 (0%)	3 (21%)	“I don’t know” (Patient)
From the Palliative Care Nurse Specialist	3 (30%)	2 (50%)	5 (36%)	“We talked to [the palliative care nurse specialist] a little more in depth and I have a better feeling for the whole process now” (Caregiver)
From the Oncology Team	4 (40%)	2 (50%)	6 (43%)	“It’s a team kind of approach” (Patient)
“Supportive Care”
Associations
Fear/Death/End-of-Life	0 (0%)	0 (0%)	0 (0%)	N/A
Positive/Support	8 (80%)	4 (100%)	12 (86%)	“(With Supportive Care) everybody knows when you’re being supported … and that’s a good thing” (Patient) “It’s to help you” (Patient)

During the initial interview, nearly half of the participants (16/34) stated that they were unfamiliar with palliative care or asked the interviewer for a definition. Twenty-eight participants (82%) associated “palliative care” with end-of-life/hospice care and felt the term triggered a sense of fear/alarm. One patient said, “Palliative makes it sound like you’re in God’s waiting room and who knows what’s next.” Twelve participants (35%) felt “palliative care” signified a helpful form of support. Twenty participants (59%) thought palliative care could be provided concurrently with cancer-directed treatments. Patients and caregivers expressed varying views of who provides palliative care (Table 1).

Follow-up interviews of eleven participants (79%) reflected recognition that palliative care is not only for terminally ill patients. Eight participants (57%) felt “palliative care” conveyed a helpful form of support. Despite perceived utility of palliative care services, thirteen participants (93%) expressed apprehension about the term “palliative care” itself and continued to associate it with death/end-of-life. Within our collaborative care model integrating the oncology team and a palliative care nurse practitioner specialist, five participants (36%) reported that they received palliative care from the nurse practitioner specialist, while six participants (43%) reported palliative care receipt from the oncology team.

In general, patients and caregivers responded more favorably to the term “supportive care,” both during initial interviews and at follow-up. Initially, 24 participants (71%) felt “supportive care” sounded “positive” and 12 participants (86%) expressed this sentiment at follow-up. No participant associated “supportive care” with end-of-life or felt the term evoked fear/alarm, initially or at follow-up.

Participants were explicitly asked whether they preferred “palliative care” or “supportive care.” Eight participants (24%) initially expressed a preference; among these, all preferred “supportive care.” At follow-up, about two-thirds of participants (9/14) expressed a preference; among these, almost 80% (7/9) preferred “supportive care.” One patient at follow-up shared, “I still feel better about Supportive care because I think it’s going to be very hard to break the association of Palliative care with end-of-life care.” At follow-up, a caregiver commented, “Supportive care is less ominous than Palliative care.”

DISCUSSION:

This qualitative study contributes knowledge about perceptions of “palliative care” versus “supportive care” among patients with a hematologic malignancy and their informal caregivers before and after they received an integrated program of primary and specialist palliative care throughout their cancer care. It is especially important to understand the views of patients with hematologic malignancies, for whom referral to specialist palliative care is typically delayed and less frequent compared to patients with solid tumors.^9–10 “Palliative care” was associated by some patients and caregivers with death/end-of-life care, and the term evoked apprehension initially and after participating in this clinical program. No patient or caregiver felt apprehensive about “supportive care.” Among those who had a preference, the majority of participants preferred “supportive care” initially and at follow-up. Following this study, our consultative service name (and all associated signage) was changed from “palliative care” to “supportive care.”

Prior literature also suggests a preference for “supportive care” among patients. A recent survey of oncology patients admitted to an Australian tertiary academic hospital revealed that 40% felt frightened and 29% felt hopeless about referral for “palliative care” services, and 50% felt more comfortable with referral to “supportive care” services.¹¹ In a study of solid tumor patients receiving an early palliative care intervention, even those who reported improved quality of life felt that “palliative care” carried a stigma and emphasized the need for this term to be reframed and better explained by health care professionals.¹²

This study had several limitations. The patients and caregivers we interviewed received care in one clinic in a dedicated cancer center. The sample size was limited, particularly for the caregivers, who were not consistently present at follow-up clinic visits. However, thematic saturation was achieved, and no participant declined the interview. Other strengths include the use of written guides to standardize the interviews and participation of an interdisciplinary team in the coding process.

Within the field itself, the term “palliative care” is still embraced by many, and the growth of programs using this term to describe their services continues at a rapid pace.^13–15 Education of patients and caregivers and broader efforts to destigmatize palliative care and normalize its integration throughout cancer care have contributed to wider acceptance and access. At the same time, findings from this study suggest that patients and families with cancer might be more receptive to and less apprehensive about “supportive care,” particularly when these services are introduced at diagnosis by the primary oncology team as a routine part of cancer care.