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The integration of palliative care in oncology has advanced rapidly in just a few short years. It is only within the past decade that the landscape of early integrated palliative care even reached a point where multiple clinical trials exist, showing significant improvements in outcomes including quality of life, symptoms and even caregiver well-being. Ensuing policy statements now call for the inclusion of palliative care as a standard component of high-quality, comprehensive cancer care.1 2 However, palliative care use among patients with haematological malignancies remains far less frequent, and is generally underdeveloped as a practice at most centres.
This is certainly not due to a lack of need. Patients with haematological malignancies experience high symptom burden, frequent psychological comorbidities and poor end-of-life quality outcomes.3–5 Indeed, many of us have called attention to these significant issues to date, and advocating for early prognosis-independent integration of palliative care into haematology.6 7
Within this landscape, one might question the need for another study on the palliative care needs of those with haematological malignancies, or the associated poor end-of-life care outcomes. However, the study by Beaussant et al in this month’s issue illustrates a greater level of sophistications that is needed in the literature in this area.8 Haematological malignancies is a catchall term used to describe a remarkably heterogeneous group of diseases, characterised by striking differences in treatment intensities and outcomes. They range from acute to chronic conditions, and portend a variety of responses to disease-directed treatments, sometimes even including the possibility of cure, which is quite unlike most advanced solid tumours. This results in a variety of symptom clusters affecting quality of life, and large variations in healthcare utilisation and palliative care needs. For patients with acute myeloid leukaemia, for example, the last 6 months of life are often filled with continued disease-directed treatment and progressive symptom burden that is largely unmet, probably because long-term survival is the goal, and that this requires intensive, risky therapies.9 Some patients with haematological malignancies may even proceed to allogeneic or autologous stem cell transplantation, taking them on an entirely different pathway of treatment, potential response and unique quality-of-life needs, while also often conferring the possibility of cure. And yet other patients, such as those with more indolent lymphomas, may receive lower intensity, intermittent chemotherapy, and derive significant survival and quality-of-life improvements from these treatments, despite the often incurable nature of their illness. Previous research has ignored these nuances, centring mostly on the differences between solid tumours and haematological malignancies as more general categories.
Beaussant et al analysed a registry of over 45 000 adult patients who died of ‘hematologic malignancies’ between 2010 and 2013 in France. Most importantly, they investigated more deeply into treatment patterns over a patient’s last month of life, and did so within the common haematological malignancy disease subgroups. This analysis thereby provides a much more granular understanding of the end-of-life course of patients with blood cancer, highlighting the important similarities and differences that exist within this diverse group of diseases and the patients they affect.
Unique patterns emerge from this analysis that will inform future work identifying both the primary and specialty palliative care needs in these different populations. For example, if one examines the terminal course of patients with a slowly progressive form of chronic myelogenous leukaemia or myelodysplastic syndrome, a very different picture emerges than the course of a patient with acute myelogenous leukaemia. Patients with chronic leukaemias often have a slowly progressive condition, and experience relatively low rates of chemotherapy utilisation in the last month of life. Beaussant found that their high rates of healthcare utilisation come less from the use of invasive mechanical ventilation in the last weeks of life, compared with patients suffering from non-Hodgkin’s lymphomas, but instead stems from more frequent emergency department visits and transfusions. This is particularly important, as transfusion needs have emerged as a significant barrier to high-quality end-of-life care in haematological malignancies.10 11 These data highlight the value in examining palliative care needs and patterns of care within subgroups of those with haematological malignancies, instead of the more traditional combined approach.
This more extensive look at subgroups may also allow us to better recognise, as palliative care clinicians, why the end-of-life experience in these subgroups may look as it does. Perhaps it should not surprise, for example, that patients with aggressive non-Hodgkin’s lymphomas and acute leukaemias have end-of-life treatment periods marked by higher rates of disease-directed therapies. After all, these diseases are usually also characterised by higher levels of chemotherapy sensitivity than solid tumours, and cure may remain possible even in relapsed or high-risk settings. Such differences also highlight the need for more disease-specific quality indicators for end-of-life care in haematological malignancies.12 In other words, if a patient with acute leukaemia may derive significant benefit from aggressive hospital-based care, which poses risk of death from intensive therapy, then this may well be truly ‘goal-concordant care’, and not a failure to palliate. Instead, we must explore opportunities to provide prognosis-independent palliative care to such patients, so that we may meet their needs regardless of the outcome.
Yet for all their differences, there continue to be at least some disturbing similarities across haematological malignancies, which we highlight as a rallying cry, demonstrating larger opportunities for intervention and improvement overall. Regardless of disease subtype and the expected responsiveness to chemotherapy, there remain abysmally low rates of specialist palliative care involvement across all patients with haematological malignancies, low rates of hospice utilisation when death is near and markedly short hospice length of stay.13 Beaussant and colleagues found this to be true in France as well, even among patients with more chronic haematological malignancies that would seem ripe for specialised palliative care interventions over longer periods of time.
For all the talk about gaps in providing palliative care for this population, we must recognise that failure will ensure if we continue to approach this population as a homogeneous group. Indeed, if specialised palliative care teams view all haematological malignancies through the same lens, or worse yet, equate their courses to patients with solid tumours, then we will continue to struggle with low rates of referral, and poor end-of-life outcomes. Efforts are needed to better understand these diseases, their expected trajectories and the perspectives of haematologic oncologists. Indeed, most haematologic oncologists recognise that discussions about the end of life occur too late, yet they may also be more likely to view palliative care as a synonym for hospice, or end-of-life care, and they may be frustrated by the perception that hospice care does not meet the unique needs of their patients, especially those deriving palliative benefits from transfusions.14 15 Better understanding the unique haematological disease courses will facilitate more optimal integration of care within unique subgroups of haematological malignancies.
For palliative care clinicians, this discussion ultimately raises three important take-home points. First, improving the integration of specialised palliative care services into haematological malignancies must begin with an understanding of the unique diseases themselves. As such, approaches to integration should be tailored to the needs of patients within particular disease states and groups, rather than to the homogeneous population as a whole. Second, efforts to address unmet palliative and end-of-life care needs in haematology cannot succeed in an environment where one chooses either aggressive disease-modifying care or hospice; upstream integration of specialist palliative care alongside active cancer treatment is necessary to change outcomes. This strategy has proven quite successful in the solid tumour realm, and must be applied in haematology, too. Finally, palliative care clinicians themselves must become more educated on the unique trajectories and needs of haematological malignancy subgroups, regarding both the patients experiencing these diseases, and the specialised haematologists who treat them.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent Not required.
Provenance and peer review Not commissioned; internally peer reviewed.
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