Symptom burden of haematological malignancies as death approaches in a community palliative care service: a retrospective cohort study of a consecutive case series

doi:10.1016/S2352-3026(15)00111-8

The Lancet Haematology

Volume 2, Issue 8, August 2015, Pages e334-e338

https://doi.org/10.1016/S2352-3026(15)00111-8 Get rights and content

Summary

Background

Patients with haematological malignancies are less likely to use palliative care services than are patients with solid tumours. This difference might stem from differing symptom burden, care needs, disease trajectories, or a combination of these factors. We described symptom burden and physical decline over time for people with haematological malignancies compared with people with solid tumours in a consecutive case series.

Methods

We included patients admitted to Silver Chain Hospice Care Service who died between Jan 1, 2011, and Dec 31, 2013, and who completed the eight-item Symptom Assessment Scale (0–10, with 0=no distress and 10=worst distress) at each clinical encounter. Physical function was assessed with the Australia-modified Karnofsky performance scale. Symptom and functional assessments were analysed at 7 days, 30 days, 60 days, and 90 days before death, by descriptive statistics.

Findings

We included 4638 participants. For people with haematological malignancies (n=224), the most troublesome symptoms were fatigue (mean score 5·2, SD 2·7) and loss of appetite (2·3, SD 2·9), and both worsened significantly near death (p=0·0035 for fatigue, p=0·016 for appetite). Other symptoms were often absent, and changed little over time. Compared with patients with solid tumours (n=4414), there were no significant differences in individual or cumulative symptom scores, changes over time, or the pattern of functional decline.

Interpretation

Community patients with haematological malignancies receiving palliative care have similar symptoms and patterns of physical decline at the end of life to people with solid tumours, suggesting similar care needs. This finding questions present limited palliative care service use by patients with haematological malignancies.

Funding

None.

Introduction

Patients with haematological malignancies are less likely to use specialist palliative care services than are patients with solid tumours.1, 2 Several reports suggest that patients with blood cancers have unmet palliative care needs.3, 4 For example, patients with haematological malignancies are more likely to die in the hospital, more likely to use intensive care services near the end of life, and more likely to receive chemotherapy near death compared with patients with solid tumours.⁵ Amid robust evidence of the benefits of concurrent palliative cancer care for patients with solid tumours,6, 7, 8, 9 further study is needed of this gap in service use by people with haematological malignancies.

Palliative care focuses on comfort, optimising functional independence and quality of life for as long as possible rather than disease-directed or life-prolonging treatment, and is increasingly thought of as a useful addition to standard cancer care. Community palliative care has become more common in recent years, but patients with haematological malignancies are less likely to be referred to palliative care services,10, 11 or are referred later in the course of illness than are patients with solid tumours.¹² Although the reasons for this difference are not well understood, some investigators have postulated that it stems from unique care needs at the end of life of people with haematological malignancies, differences in symptom burden, different trajectories of decline, or a combination of these factors compared with people with solid tumours.1, 2, 13, 14

Differences in symptom burden at time of referral to palliative care have been studied,3, 4 but we are not aware of any studies that longitudinally assessed and compared symptom burden and physical decline between patients with haematological malignancies and those with solid tumours. We assessed longitudinal symptom data collected at the point of care in a large community palliative care service, among patients with haematological cancers and patients with solid tumours. We postulated that there would be no difference in the type and severity of symptoms between these groups, and no difference in the pattern of decline in physical functioning.

Section snippets

Study design

The Silver Chain Hospice Care Service is the sole community palliative care programme serving the entire metropolitan area of Perth, WA, Australia (with a population of 2·2 million people). The programme receives roughly 3000 referrals for palliative care services each year, complementing inpatient direct and consultative palliative care services across the city. Care is provided to patients free of charge and is provided by a nurse-led interdisciplinary team including nurses, doctors, allied

Results

We included 4638 patients in this study, of whom 224 (5%) had a haematological malignancy and 4414 (95%) had a solid tumour. Mean age in both groups was 70 years, with a slightly higher proportion of men in the solid tumour group than in the haematological malignancy group (table 1). The most common haematological diagnosis was lymphoma, followed by acute leukaemia, multiple myeloma, and chronic leukaemia (table 1). The most common solid tumour diagnosis was respiratory cancer, followed by

Discussion

Patients with haematological malignancies are sometimes thought to have different care needs at the end of life, or a different trajectory of decline,¹⁸ to patients with solid tumours, resulting in fewer referrals to palliative care services. Our findings challenge this notion. In this large sample of patients in a community palliative care setting, we found similar symptoms in the last 90 days of life.

We recorded a statistically and clinically significant worsening of fatigue and appetite in

References (25)

AS Epstein et al.
Palliative care and hematologic oncology: the promise of collaboration
Blood Rev
(2012)
V Manitta et al.
The symptom burden of patients with hematological malignancy: a cross-sectional observational study
J Pain Symptom Manage
(2011)
C Zimmermann et al.
Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial
Lancet
(2014)
TW LeBlanc et al.
What is different about patients with hematologic malignancies? a retrospective cohort study of cancer patients referred to a hospice research network
J Pain Symptom Manage
(2015)
MJ Johnson et al.
Clinically important differences in the intensity of chronic refractory breathlessness
J Pain Symptom Manage
(2013)
GH Guyatt et al.
Methods to explain the clinical significance of health status measures
Mayo Clin Proc
(2002)
GA Curt
Impact of fatigue on quality of life in oncology patients
Semin Hematol
(2000)
Z Butt et al.
Use of a single-item screening tool to detect clinically significant fatigue, pain, distress, and anorexia in ambulatory cancer practice
J Pain Symptom Manage
(2008)
VJ Manitta et al.
Palliative care and the hemato-oncological patient: can we live together? A review of the literature
J Palliat Med
(2010)
NA Fadul et al.
Comparison of symptom burden among patients referred to palliative care with hematologic malignancies versus those with solid tumors
J Palliat Med
(2008)

D Hui et al.

Quality of end-of-life care in patients with hematologic malignancies: a retrospective cohort study

Cancer

(2014)

JS Temel et al.

Early palliative care for patients with metastatic non-small-cell lung cancer

N Engl J Med

(2010)

Cited by (37)

“A strong reason why I enjoy coming to work”: Clinician acceptability of a palliative and supportive care intervention (PACT) for older adults with acute myeloid leukemia and their care partners
2024, Journal of Geriatric Oncology
Studies about clinician acceptability of integrative palliative care interventions in the inpatient and outpatient cancer settings are limited. In this study, we examined clinician acceptability of a NIH-funded interdisciplinary PAlliative and Supportive Care inTervention (PACT) for older adults with acute myeloid leukemia (AML) and their care partners that transcends both inpatient and outpatient settings.
Data was collected using semi-structured interviews with clinicians who were directly involved in PACT. The domains of the Theoretical Framework of Acceptability were used to guide the qualitative analysis.
The clinicians consisted of occupational therapists (37%), physical therapists (25%), registered nurses (25%), and a clinical rehabilitation manager (13%). Five themes were identified in the thematic analysis: (1) Emotions and affect towards the intervention, (2) Intervention coherence and self-efficacy, (3) Barriers, burden, and opportunity costs of delivering the intervention, (4) Usefulness and effectiveness of the intervention, and (5) Recommendations to improve intervention delivery.
All clinicians found the PACT intervention highly acceptable and expressed the positive impact of the intervention on job fulfillment and satisfaction. Our findings provide evidence to inform the delivery and implementation of future large scale integrative palliative care intervention trials.
Innovations for the integration of palliative care for hematologic malignancies
2023, Current Problems in Cancer
Specialist palliative care provides additional support to facilitate living well with a serious illness, like cancer, even while pursuing disease-directed therapy. For patients with hematologic malignancies, integrated specialist palliative care improves symptom burden, mood, and quality of life, with benefits even extending to caregivers. Despite this, patients with hematologic malignancies continue to have significant unmet palliative care needs and typically access palliative care late in their disease trajectories, if at all. In this paper, we will define specialist palliative care and review its benefits for patients with hematologic malignancies. We will discuss the unmet palliative care needs of this patient population and the barriers to integrating palliative care and oncologic care. Finally, we will explore innovations and areas of future research to enhance and optimize palliative care integration into usual cancer care treatment for patients with hematologic malignancies. We will explore the importance of ongoing clinical trials that are examining the correct “dose” of palliative care; the use of technology and telehealth; and the use of novel treatments for this patient population. Together, we will consider innovative avenues to provide palliative care to patients with hematologic malignancies and their caregivers.
What Is the Role for Palliative Care in Patients With Advanced Hematologic Malignancies?
2023, Evidence-Based Practice of Palliative Medicine, Second Edition
Patients with hematologic malignancies experience highly unpredictable illness trajectories and intense treatment plans that often result in complex psychological and physical symptoms. Unique disease-related factors, such as low blood counts and heterogeneous disease states with respect to curability and survival, may increase symptom burden and result in psychological needs in this population. Moreover, patients with hematologic malignancies are also more likely to experience rapid changes in clinical status and intensive health care utilization in the last month of life, and are less likely to use hospice or to enroll in hospice earlier in the disease course. Timely integration of palliative care results in significant alleviation of physical symptoms and a decrease in anxiety and depression symptoms, and helps patients cope adaptively with their disease. Despite the palliative care needs of patients with hematologic malignancies and the benefits of palliative care, rates of timely integration of palliative care are low.
This chapter presents information about unique hematology-related factors that influence how palliative care is best integrated for this population. It also reviews practical ways to promote timely integration. In addition, the chapter discusses barriers to palliative care and hospice use for patients with hematological malignancies, including disease-based, perception-based, and system-based barriers. Finally, the chapter highlights future directions for effectively addressing the palliative and end-of-life care needs of patients with hematologic malignancies.
Perspectives Regarding Hospice Services and Transfusion Access: Focus Groups With Blood Cancer Patients and Bereaved Caregivers
2020, Journal of Pain and Symptom Management
Citation Excerpt :
This trend in late hospice use among patients with blood cancers appears to be rising.10,14,15 These findings raise concerns about the quality of symptom control for patients with blood cancers, especially when placed in the context of studies demonstrating a high symptom burden in this population near the EOL.16–18 Recent large database and physician survey studies have examined potential causes of low hospice use among patients with blood cancers.
Patients with blood cancers have low rates of timely hospice use. Barriers to hospice use for this population are not well understood. Lack of transfusion access in most hospice settings is posited as a potential reason for low and late enrollment rates.
We explored the perspectives of patients with blood cancers and their bereaved caregivers regarding the value of hospice services and transfusions.
Between June 2018 and January 2019, we conducted three focus groups with blood cancer patients with an estimated life expectancy of six months or less and two focus groups with bereaved caregivers of patients with blood cancers. We asked participants their perspectives regarding quality of life (QOL) and about the potential association of traditional hospice services and transfusions with QOL. A hematologic oncologist, sociologist, and qualitatively trained research assistant conducted thematic analysis of the data.
Twenty-seven individuals (18 patients and nine bereaved caregivers) participated in the five focus groups. Participants identified various QOL domains that were important to them but focused largely on a desire for energy to maintain physical/functional well-being. Participants considered transfusions a high-priority service for their QOL. They also felt that standard hospice services were important for QOL. Bereaved caregivers reported overall positive experiences with hospice.
Our analysis suggests that although patients with blood cancers value hospice services, they also consider transfusions vital to their QOL. Innovative care delivery models that combine the elements of standard hospice services with other patient-valued services like transfusions are most likely to optimize end-of-life care for patients with blood cancers.
Patients with haematological malignancies should not have to choose between transfusions and hospice care
2020, The Lancet Haematology
Citation Excerpt :
Multiple studies have repeatedly shown that having a haematological malignancy is a strong predictor of patients either never using hospice or enrolling very late in the disease course, so that little time remains for hospice programmes to establish a relationship with patients and their families, or to provide beneficial care.12–15 Low rates of timely hospice use raise concerns about the quality of symptom control for patients with blood cancers, particularly in the context of studies that show extensive symptom burden in this population.16–18 Over the past 5 years, various studies have tried to elucidate why hospice care is less commonly used by patients with haematological malignancies than by patients with other types of cancer.15,19–23
Hospice programmes are important for providing end-of-life care to patients with life-limiting illnesses. Hospice enrolment improves quality of life for patients with advanced cancer and reduces the risk of depression for caregivers. Despite the clear benefits of hospice care, patients with haematological malignancies have the lowest rates of enrolment among patients with any tumour subtype. Furthermore, when patients with haematological disorders do enrol into hospice care, they are more likely to do so within 3 days of death than are patients with non-haematological malignancies. Although reasons for low and late hospice use in this population are multifactorial, a key barrier is limited access to blood transfusions in hospice programmes. In this Viewpoint, we discuss the relationship between transfusion dependence and hospice use for patients with blood cancers. We suggest that rather than constraining patients into either transfusion or hospice models, policies that promote combining palliative transfusions with hospice services are likely to optimise end-of-life care for patients with haematological malignancies.
Effects of tertiary palliative care on the pattern of end-of-life care in patients with hematologic malignancies in Korea
2024, European Journal of Haematology

View all citing articles on Scopus

View full text

ArticlesSymptom burden of haematological malignancies as death approaches in a community palliative care service: a retrospective cohort study of a consecutive case series

Summary

Background

Methods

Findings

Interpretation

Funding

Introduction

Section snippets

Study design

Results

Discussion

Blood Rev

J Pain Symptom Manage

Lancet

J Pain Symptom Manage

J Pain Symptom Manage

Mayo Clin Proc

Semin Hematol

J Pain Symptom Manage

Palliative care and the hemato-oncological patient: can we live together? A review of the literature

J Palliat Med

Comparison of symptom burden among patients referred to palliative care with hematologic malignancies versus those with solid tumors

J Palliat Med

Quality of end-of-life care in patients with hematologic malignancies: a retrospective cohort study

Cancer

Early palliative care for patients with metastatic non-small-cell lung cancer

N Engl J Med

Articles
Symptom burden of haematological malignancies as death approaches in a community palliative care service: a retrospective cohort study of a consecutive case series