Short report

BMJ Support Palliat Care: first published as 10.1136/bmjspcare-2020-002865 on 26 April 2021. Downloaded from http://spcare.bmj.com/ on August 12, 2021 at Mozambique:BMJ-PG
Palliative Medicine in
Myelodysplastic Syndromes: Patients
and Caregivers - A Qualitative Study
Anjali V Desai  ‍ ‍,1,2 Virginia M Klimek,1,2 Peter J Wan,3
Aileen Heinberg,4 Kelley L Anderson,5 Camila Bernal,1 Judith E Nelson1,2

1
Medicine, Memorial Sloan ABSTRACT
Kettering Cancer Center, New Key messages
Objectives  Evidence-­based guidelines call for
York, New York, USA
2
Medicine, Weill Cornell Medical integration of palliative care within oncology What was already known?
College, New York, New York, from diagnosis. Misperceptions about palliative ►► Although palliative care encompasses
USA care have impeded implementation. Prior symptom management, communication
3
Touro College of Osteopathic
Medicine, New York, New York, research has not examined perceptions about and care planning throughout illness and
USA ‘palliative care’ versus ‘supportive care’ among is based on need rather than prognosis,
4
Wells Fargo and Co, San patients and caregivers to whom this care is it is often conflated with end-­of-­life or
Francisco, California, USA hospice care. Prior literature has suggested
5
University of California System, introduced routinely as part of comprehensive
a preference for the term 'supportive care'
Irvine, California, USA cancer care. We conducted a qualitative study of
among oncology patients.
patients with myelodysplastic syndromes (MDS)
Correspondence to What are the new findings?

Sponsor. Protected by copyright.

Dr Anjali V Desai, Medicine,
and their informal caregivers to elicit perceptions
►► This qualitative study contributes
Memorial Sloan Kettering Cancer of ‘palliative care’ and ‘supportive care’ before
Center, New York, NY 10065,
knowledge about perceptions of 'palliative
and after they received integrated primary/
USA; d​ esaia2@​mskcc.o​ rg care' versus 'supportive care' among
specialist palliative care from diagnosis. patients with a hematologic malignancy
This work was presented in Methods  Patients with newly diagnosed MDS (Myelodysplastic Syndromes) and their
abstract form at the American and caregivers were interviewed about their informal caregivers before and after
Academy of Hospice and
understanding of ‘palliative care’ and ‘supportive they received an integrated programme
Palliative Medicine Annual
Assembly, Orlando, FL, USA, care’ at diagnosis and follow-­up. Interviews were of primary and specialist palliative care
13–16 March 2019. audio-­recorded, transcribed, and analysed by an throughout their cancer care. 'Palliative
care' was associated by some patients and
interdisciplinary team.
Received 21 December 2020 caregivers with death/end-­of-­life care, and
Revised 20 March 2021 Results  Forty-­eight interviews were conducted
the term evoked apprehension initially
Accepted 30 March 2021 in total, including with 21 patients and 13 and after participating in this programme.
caregivers at diagnosis, and 10 patients and No patient or caregiver felt apprehensive
4 caregivers at follow-­up. Initially, 28/34 about 'supportive care'.
participants (82%) associated ‘palliative care’
What is their significance?
with death or fear/alarm. At follow-­up, 11/14 ►► Findings from this study suggest that
participants (79%) recognised that ‘palliative patients and families with cancer
care’ is not only for terminally ill patients, yet might be more receptive to and less
13/14 participants (93%) still felt apprehensive apprehensive about the term 'supportive
about the term. Initially, 24/34 participants care', particularly when these services are
(71%) felt ‘supportive care’ sounded ‘positive’ introduced at diagnosis by the primary
oncology team as a routine part of
and 12/14 participants (86%) reported this at
comprehensive cancer care.
follow-­up. No participant associated ‘supportive
© Author(s) (or their care’ with death or fear/alarm at either
employer(s)) 2021. No time point. Among participants who had a INTRODUCTION
commercial re-­use. See rights preference, ‘supportive care’ was the preferred Evidence-­based guidelines of the National
and permissions. Published by
BMJ.
term initially and at follow-­up. Comprehensive Cancer Network and the
Conclusions  Patients with MDS and caregivers American College of Surgeons Commis-
To cite: Desai AV, Klimek VM, receiving integrated primary/specialist palliative sion on Cancer include palliative care
Wan PJ, et al. BMJ Supportive
& Palliative Care Epub ahead care from diagnosis responded more favourably as an integral component of cancer
of print: [please include Day to and felt less apprehensive about ‘supportive care.1 2 Although palliative care encom-
Month Year]. doi:10.1136/ care’, initially and at follow-­up. passes symptom management, commu-
bmjspcare-2020-002865 nication and care planning throughout

Desai AV, et al. BMJ Supportive & Palliative Care 2021;0:1–5. doi:10.1136/bmjspcare-2020-002865 1

 Short report

BMJ Support Palliat Care: first published as 10.1136/bmjspcare-2020-002865 on 26 April 2021. Downloaded from http://spcare.bmj.com/ on August 12, 2021 at Mozambique:BMJ-PG
illness and is based on need rather than prognosis, it is was introduced as a specialist who would assist the
often conflated with hospice care. Recent analysis of a oncology team in responding to palliative care needs
national cancer database revealed that 60% of adults throughout the illness.
self-­identifying as knowledgeable about palliative care
had at least one misperception about it, including asso- Follow-up interview
ciation with end-­of-­life.3 Since the term ‘supportive Patients returning to the clinic received their oncology
care’ may be perceived differently, with clearer distinc- care with concurrent palliative care provided by the
tion from end-­of-­life or hospice care, this term has primary oncology team,6 which had discretion to refer
replaced ‘palliative care’ to increase acceptability and for specialist palliative care. At the fifth follow-­ up
referrals for consultation.4 Yet there are also successful visit, the interviewer used a written guide to reassess
‘palliative care’ programmes and ongoing debate about patient and caregiver understanding of ‘palliative care’
optimal nomenclature. and ‘supportive care’.
The importance of ‘primary’ (vs ‘specialist’) pallia-
tive care, delivered by clinicians (eg, oncologists) who Analysis
care for patients with serious and complex illness, Verbatim transcripts of audio-­ recorded interviews
is increasingly recognised.5 Ideally, primary pallia- were imported into ​ ATLAS.​
ti software to facili-
tive care is supplemented by specialist palliative care tate qualitative analysis using the grounded theory
when needed. Our dedicated cancer centre has piloted method.7 An interdisciplinary team of three trained
the introduction of palliative care at diagnosis in the coders (supportive care researcher (AVD), oncology
outpatient oncology setting.6 Within this programme, clinic nurse (KLA) and behavioural scientist (AH))
we conducted a qualitative study of patients with reviewed the same subset of 10 transcripts (~20% of
myelodysplastic syndromes (MDS) and their primary the total), including 5 from each time point (initial and
informal caregivers to elicit perceptions of ‘pallia- follow-­up), to develop the initial coding framework.
tive care’ and ‘supportive care’ before and after they A codebook was iteratively built using an initial line-­
received cancer care integrating primary and specialist by-­line inductive coding process. This codebook was

Sponsor. Protected by copyright.

palliative care starting at diagnosis. applied to all transcripts using cycles of coding and
constant comparison, with refinement of the code-
METHODS book to incorporate new insights.7 The coding team
Eligibility met regularly for consensus discussions and resolution
This study was conducted as a preplanned compo- of discrepancies. Codes identifying common feed-
nent of the ‘One-­Two-­Three Project to Advance Pallia- back were grouped into categories to identify major
tive Care’ at our institution.6 While the larger project themes.8 Thematic saturation was achieved.
encompasses adult (≥21 years old), English-­speaking
patients establishing care in one of multiple clinics, RESULTS
this study focused on patients with newly diagnosed, All patients and caregivers approached for inter-
untreated MDS in a single clinic staffed by a primary views agreed to participate. We conducted a total
oncology physician and nurse. We also enrolled of 48 interviews of 21 patients (median age 69) and
patients’ primary informal caregivers (whom patients 13 caregivers (median age 54). A majority of the
designated as a primary source of support for health- patients (62%) were men (consistent with expected
care decision-­making) accompanying the patient to the male predominance in MDS), whereas a majority of
clinic visit. the caregivers (85%) were women. Seventy percent of
caregivers were spouses and 30% were adult children.
Initial interview Ten patients and four caregivers completed follow-­up
Our cancer centre’s Institutional Review Board interviews; among these, the median time between
provided a waiver of informed consent for this initial and follow-­up interviews was 81 days (IQR 57,
study, based on minimal risk. A trained interviewer 94). Half of patients completing follow-­up interviews
approached eligible patients and caregivers for consent had received specialist (as well as primary) palliative
to audio-­record a brief initial interview before they care, with a median of four visits with the specialist.
met with the oncology team. Based on a written guide, Interview themes are shown in table 1.
these interviews were conducted in a private clinic During the initial interview, nearly half of the partic-
room and elicited understanding of ‘palliative care’ ipants (16/34) stated that they were unfamiliar with
and ‘supportive care’ in relation to cancer care. palliative care or asked the interviewer for a definition.
Twenty-­eight participants (82%) associated ‘palliative
Introduction to palliative care by the oncology team care’ with end-­of-­life/hospice care and felt the term
During the clinical encounter, the oncologist used a triggered a sense of fear/alarm. One patient said, ‘Palli-
written script to define palliative care as ‘an essen- ative makes it sound like you’re in God’s waiting room
tial part of comprehensive cancer care, regardless of and who knows what’s next’. Twelve participants
stage or prognosis’. A palliative care nurse practitioner (35%) felt ‘palliative care’ signified a helpful form of

2 Desai AV, et al. BMJ Supportive & Palliative Care 2021;0:1–5. doi:10.1136/bmjspcare-2020-002865

 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
haematologist 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

Desai AV, et al. BMJ Supportive & Palliative Care 2021;0:1–5. doi:10.1136/bmjspcare-2020-002865

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)
Short report

3
Continued

Sponsor. Protected by copyright.

BMJ Support Palliat Care: first published as 10.1136/bmjspcare-2020-002865 on 26 April 2021. Downloaded from http://spcare.bmj.com/ on August 12, 2021 at Mozambique:BMJ-PG
 Short report

BMJ Support Palliat Care: first published as 10.1136/bmjspcare-2020-002865 on 26 April 2021. Downloaded from http://spcare.bmj.com/ on August 12, 2021 at Mozambique:BMJ-PG
support. Twenty participants (59%) thought pallia-

supported … and that’s a good thing’ (Patient) ‘It’s to help you’

in depth and I have a better feeling for the whole process now’
tive care could be provided concurrently with cancer-­

‘We talked to(the palliative care nurse specialist) a little more

‘(With Supportive Care) everybody knows when you’re being

‘I think they should start with the doctor during the initial
directed treatments. Patients and caregivers expressed
varying views of who provides palliative care (table 1).
Follow-­ up interviews of 11 participants (79%)
reflected recognition that palliative care is not only
for terminally ill patients. Eight participants (57%) felt

‘It’s a team kind of approach’ (Patient)

interview of your case’ (Patient) ‘palliative care’ conveyed a helpful form of support.
Despite perceived utility of palliative care services,
‘I don’t know’ (Patient) 13 participants (93%) expressed apprehension about
the term ‘palliative care’ itself and continued to asso-
Illustrative passage

ciate it with death/end-­of-­life. Within our collabora-

tive care model integrating the oncology team and a
(Caregiver)

palliative care nurse practitioner specialist, five partici-

(Patient)
pants (36%) reported that they received palliative care
N/A
from the nurse practitioner specialist, while six partic-
ipants (43%) reported palliative care receipt from the
oncology team.
In general, patients and caregivers responded more
3 (21%)
5 (36%)

6 (43%)
11 (79%)

favourably to the term ‘supportive care’, both during

12 (86%)
0 (0%)

initial interviews and at follow-­up. Initially, 24 partic-

ipants (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,

Sponsor. Protected by copyright.

initially or at follow-­up.
4 (100%)

4 (100%)
2 (50%)

2 (50%)
0 (0%)

0 (0%)

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
Frequency

7 (70%)

3 (30%)
3 (30%)

4 (40%)

8 (80%)
0 (0%)

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 programme of primary and
specialist palliative care throughout their cancer
care. It is especially important to understand the
views of patients with haematological malignan-
cies, for whom referral to specialist palliative care
From the palliative care nurse specialist

is typically delayed and less frequent compared with

patients with solid tumours.9 10 ‘Palliative care’ was
Oncology team should introduce

associated by some patients and caregivers with

Table 1  Continued

Receipt of palliative care

From the oncology team

death/end-­of-­life care, and the term evoked appre-

Best way to introduce

Fear/death/end-­of-­life

hension initially and after participating in this

‘Supportive care’

Positive/support

clinical programme. No patient or caregiver felt

Associations

apprehensive about ‘supportive care’. Among those

Unsure
Theme

who had a preference, the majority of participants

preferred ‘supportive care’ initially and at follow-­up.

4 Desai AV, et al. BMJ Supportive & Palliative Care 2021;0:1–5. doi:10.1136/bmjspcare-2020-002865

 Short report

BMJ Support Palliat Care: first published as 10.1136/bmjspcare-2020-002865 on 26 April 2021. Downloaded from http://spcare.bmj.com/ on August 12, 2021 at Mozambique:BMJ-PG
Following this study, our consultative service name Provenance and peer review  Not commissioned; externally
(and all associated signage) was changed from ‘palli- peer reviewed.
ative care’ to ‘supportive care’. ORCID iD
Prior literature also suggests a preference for Anjali V Desai http://​orcid.​org/​0000-​0001-​8586-​7188
‘supportive care’ among patients. A recent survey of
oncology patients admitted to an Australian tertiary REFERENCES
1 National Comprehensive Cancer Network. Palliative
academic hospital revealed that 40% felt frightened
care (version 2.2021). Available: https://www.​nccn.​org/​
and 29% felt hopeless about referral for ‘palliative professionals/​physician_​gls/​pdf/​palliative.​pdf [Accessed 20 Mar
care’ services, and 50% felt more comfortable with 2021].
referral to ‘supportive care’ services.11 In a study of 2 American College of Surgeons Commission on Cancer.
patients with solid tumours receiving an early palliative Optimal resources for cancer care, 2020. Available: https://
www.​facs.​org/-/​media/​files/​quality-​programs/​cancer/​coc/​
care intervention, even those who reported improved optimal_​resources_​for_​cancer_​care_​2020_​standards.​ashx
quality of life felt that ‘palliative care’ carried a stigma [Accessed 20 Mar 2021].
and emphasised the need for this term to be reframed 3 Cheng BT, Wangmo T, Hauser JM. Patterns of palliative care
and better explained by healthcare professionals.12 beliefs among adults in the U.S.: analysis of a national cancer
This study had several limitations. The patients and database. J Pain Symptom Manage 2019;58:1056–67.
4 Dalal S, Palla S, Hui D, et al. Association between a name
caregivers we interviewed received care in one clinic in change from palliative to supportive care and the timing of
a dedicated cancer centre. The sample size was limited, patient referrals at a comprehensive cancer center. Oncologist
particularly for the caregivers, who were not consis- 2011;16:105–11.
tently present at follow-­ up clinic visits. However, 5 Quill TE, Abernethy AP. Generalist plus specialist palliative
care--creating a more sustainable model. N Engl J Med
thematic saturation was achieved, and no participant
2013;368:1173–5.
declined the interview. Other strengths include the 6 Desai AV, Klimek VM, Chow K, et al. 1-2-3 project: a quality
use of written guides to standardise the interviews and improvement initiative to normalize and Systematize palliative
participation of an interdisciplinary team in the coding care for all patients with cancer in the outpatient clinic setting.

Sponsor. Protected by copyright.

process. J Oncol Pract 2018;14:e775–85.
7 Corbin JM, Strauss A. Grounded theory research: procedures,
Within the field itself, the term ‘palliative care’ is still canons, and evaluative criteria. Qual Sociol 1990;13:3–21.
embraced by many, and the growth of programmes 8 Braun V, Clarke V. Using thematic analysis in psychology. Qual
using this term to describe their services continues at Res Psychol 2006;3:77–101.
a rapid pace.13–15 Education of patients and caregivers 9 Rao V, Olszewski A, Egan P. Billed palliative care services and
end-­of-­life care in patients with hematologic malignancies.
and broader efforts to destigmatize palliative care
Supportive Care in Oncology Symposium, 2019.
and normalise its integration throughout cancer care 10 Egan PC, LeBlanc TW, Olszewski AJ. End-­Of-­Life care quality
have contributed to wider acceptance and access. At outcomes among Medicare beneficiaries with hematologic
the same time, findings from this study suggest that malignancies. Blood Adv 2020;4:3606–14.
patients and families with cancer might be more recep- 11 Chosich B, Burgess M, Earnest A, et al. Cancer patients'
perceptions of palliative care. Support Care Cancer
tive to and less apprehensive about ‘supportive care’, 2020;28:1207–14.
particularly when these services are introduced at diag- 12 Zimmermann C, Swami N, Krzyzanowska M, et al. Perceptions
nosis by the primary oncology team as a routine part of palliative care among patients with advanced cancer and
of cancer care. their caregivers. CMAJ 2016;188:E217–27.
13 Hughes MT, Smith TJ. The growth of palliative care in the
Funding  AVD was the Frances Young Tang Research Fellow United States. Annu Rev Public Health 2014;35:459–75.
in Palliative Medicine at Memorial Sloan Kettering Cancer 14 Dumanovsky T, Augustin R, Rogers M, et al. The growth of
Center from 2016 to 2017. This project was supported in part palliative care in U.S. hospitals: a status report. J Palliat Med
by the Charles Hallac Fund for Palliative Care in Oncology at 2016;19:8–15.
Memorial Sloan Kettering Cancer Center. This research was 15 Center to Advance Palliative Care. Palliative care continues
funded in part through the NCI MSK Cancer Centre Support its annual growth trend, according to latest center to advance
Grant/Core Grant P30 CA008748. palliative care analysis, 2018. Available: https://www.​capc.​org/​
about/​press-​media/​press-​releases/​2018-​2-​28/​palliative-​care-​
Competing interests  None declared. continues-​its-​annual-​growth-​trend-​according-​latest-​center-​
Patient consent for publication  Not required. advance-​palliative-​care-​analysis/ [Accessed 20 Mar 2021].

Desai AV, et al. BMJ Supportive & Palliative Care 2021;0:1–5. doi:10.1136/bmjspcare-2020-002865 5