We identified references for this Viewpoint through searches of PubMed using the search terms “transfusions”, “hospice”, “haematologic malignancies,” and “end-of-life care” from Jan 1, 1999, to Dec 18, 2019. We identified additional articles by reviewing the reference lists of selected papers. Only papers published in English were reviewed and considered when drafting the manuscript. The final reference list was generated on the basis of originality and relevance to the scope of this Viewpoint.
ViewpointPatients with haematological malignancies should not have to choose between transfusions and hospice care
Introduction
Since the establishment of the first modern hospice in 1967 by Dame Cicely Saunders, hospice use around the world has increased substantially, with 1·49 million Medicare beneficiaries accessing hospice services in the USA in 2017.1 The growth in the hospice movement is largely explained by the effectiveness of hospice programmes in alleviating suffering and providing high-quality, end-of-life care. With an interdisciplinary team of volunteers, home health aides, social workers, chaplains, nurses, and physicians, hospice provides expert symptom-directed care to patients with life-limiting illnesses. The model of care delivery varies in different countries. For example, the Medicare Hospice Benefit, which was created by the US Congress to enable older adults (aged ≥65 years) to receive hospice care, typically requires patients to have an estimated life expectancy of 6 months or less and to forgo treatments directed at their disease (eg, chemotherapy). However, such eligibility criteria do not exist for many hospice programmes in Europe.2, 3 Despite variations in hospice programmes around the world, they share the common goal of improving quality of life for patients through expert, symptom-directed care.
Several studies have shown that hospice care is beneficial for patients with advanced cancer and their families.4, 5, 6, 7, 8, 9, 10 Patients who enrol in hospice have better quality of life than do those who die in hospitals without hospice care.4 Hospice enrolees also have a lower number of hospital admissions, intensive care unit (ICU) admissions, and invasive procedures during the last year of life than do patients who do not enrol in hospice.9 Additionally, hospice care has downstream effects beyond patients themselves. Caregivers of enrolled patients have a reduced risk of developing major depression and are also more likely to perceive that their loved ones received excellent end-of-life care than are caregivers of patients who die in hospitals.4, 5, 8 Furthermore, these patient and caregiver benefits are accompanied by lower health-care system costs than those associated with dying in a hospital setting.9 Accordingly, hospice care is widely endorsed as an ideal model for high-quality, end-of-life care.
Despite the benefits of hospice care, few patients with haematological malignancies access its services.11, 12, 13 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, 13, 14, 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, 17, 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, 20, 21, 22, 23 The rapid and unpredictable pace of evolution of some haematological malignancies and the perception that additional disease-directed treatment might still provide benefit, even in a patient with relapsed or refractory disease, are contributing factors to low and late hospice enrolment. Several analyses have repeatedly shown that limited access to blood product transfusions in the hospice setting is a major barrier to receiving end-of-life care in a hospice setting.15, 19, 20, 21, 22, 23 Given that patients with end-stage haematological malignancies might have been receiving blood products regularly for months or years and might still be deriving symptomatic benefit from transfusions, this barrier places patients in the position of having to make a “terrible choice”24 between continuing blood transfusions and receiving hospice care. In this Viewpoint, we review patterns of hospice use for patients with blood cancers, describe determinants of hospice use with a focus on the relationship between transfusion dependence and hospice enrolment, and highlight potential solutions to improve hospice use by this patient subgroup.
Section snippets
Hospice use among patients with blood cancers
Existing research suggests a quality gap with respect to hospice use and end-of-life care for patients with haematological malignancies.11, 12, 13, 22, 25, 26, 27 For example, in a large US Surveillance Epidemiology and End Results (SEER)-Medicare analysis of 215 484 individuals aged 65 years or older who died of cancer from 1991 to 2000, having a blood cancer rather than a non-haematological malignancy (ie, solid tumour) was the strongest predictor of not enrolling in hospice.12 Furthermore,
Determinants of hospice use by patients with blood cancers
A rigorous understanding of factors that influence hospice referrals by haematological oncologists and decision making by patients is necessary to develop effective interventions to improve end-of-life care. Data from interviews, focus group studies, surveys, and population-based analyses suggest that barriers to hospice use are multifactorial. These barriers can be divided into four broad categories—namely, disease factors, patient factors, haematological oncologist factors, and system factors
Transfusions versus hospice instead of transfusions plus hospice
Patients with haematological cancers often have a substantial need for blood transfusions to manage symptoms of fatigue, dyspnoea, and bleeding. In a French study of over 46 000 patients who died of haematological malignancies, almost half (48·5%) received at least one blood transfusion in the last month of life, with the highest proportion of those receiving transfusions being patients with acute leukaemia or myelodysplastic syndromes.38 Another study of 21 patients who died in a palliative
Interventions to end the dichotomy of transfusions versus hospice
We need interventions to improve hospice use for patients with haematological malignancies. Efforts to address patient and haematological oncologist factors (panel) are necessary, but these efforts alone have not resulted in lasting change. Most patients with haematological malignancies already report a preference to die at home and most haematological oncologists believe in the general philosophy of hospice care.21, 25 However, several large population-based studies spanning more than two
Discussion
Despite important advances in the quality of diagnostic assessment and disease-directed care over the past decade for patients with haematological malignancies, end-of-life care for this population remains suboptimal. Over two decades of research has shown persistently low rates of timely hospice use, particularly among transfusion-dependent patients. Although research has often focused on addressing the perspectives of both patients and physicians, it is time to combine research with policy
Conclusion
Patients with haematological malignancies have substantial physical and psychological symptoms during the course of their disease, which worsen near the end of life. This population stands to benefit from the high-quality symptom management that hospice provides; however, transfusion support is also beneficial for symptoms of fatigue, dyspnoea, and bleeding. The dichotomy between transfusion support and end-of-life care thus needs to end to improve end-of-life care for patients with blood
Search strategy and selection criteria
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Cited by (20)
Perspectives on Transfusions for Hospice Patients With Blood Cancers: A Survey of Hospice Providers
2024, Journal of Pain and Symptom ManagementHome Delivery: Transfusion Services When and Where They Are Needed
2022, Transfusion Medicine ReviewsCitation Excerpt :A study of 21033 patients [27] demonstrated median duration of hospice enrolment of 6 days for transfusion-dependent patients compared with 11 days for non–transfusion-dependent patients. Whether continuing transfusion support is a barrier to hospice admission does vary between institutions and jurisdictions [27,28] and home transfusion has the potential to bridge this gap. In addition, assessment of quality of life in patients receiving both formal community palliative care and transfusion at home would be of interest.
Rationalising red blood cell transfusions in advanced haematological malignancies: a patient-centred approach
2022, The Lancet Healthy LongevityPalliative care of patients with haematological malignancies: strategies to overcome difficulties via integrated care
2021, The Lancet Healthy LongevityCitation Excerpt :A considerable number of patients with haematological malignancies are dependent on transfusions; however, care providers in hospices are often unable to complete the procedures. As Odejide and Steensma59 stated, patients with haematological malignancies should not have to choose between transfusions and hospice care. If the patient needs transfusion for symptom control, improved quality of life, or prolongation of survival, the palliative or hospice care services should be able to provide them.
Tailoring care for patients with haematological malignancies
2020, The Lancet HaematologyA multicentre survey on the perception of palliative care among health professionals working in haematology
2024, Supportive Care in Cancer