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Palliative care for patients with hematological malignancies: Time for a new model
Leukemia Research 48 (2016) 78–79
Contents lists available at ScienceDirect
Leukemia Research journal homepage: www.elsevier.com/locate/leukres
Commentary
Palliative care for patients with hematological malignancies: Time for a new model夽
Palliative care for patients with hematological malignancies is receiving increasing attention. Compared to patients with solid tumors, patients with leukemia, lymphoma and myeloma more often die on medical wards, rather than at home or in hospices, and receive more aggressive care [1]. As well, advance care planning tends to be neglected, and palliative care teams are often absent or involved very late in the course of illness [2,3]. These challenges have been reported consistently across international settings. However, this research has tended to rely on administrative databases, and the perspective of patients and their family members has often been missing. In this issue, Shirai et al. report results from a survey of bereaved family members of patients with leukemia and lymphoma who died in 4 university hospitals in Tokyo [4]. The respondents evaluated the care provided during the patients’ last hospitalization, reporting on satisfaction with care and “good death” factors. A majority of caregivers reported that they were not satisfied with the care provided during the patient’s last hospitalization. Although almost 80% felt that the medical staff had always cared for the patient with respect, only one third agreed that the patient had been relieved as far as possible of pain and physical distress, and less than one quarter agreed that there had been adequate relief of psychological distress. Results were also compared those of a similar survey conducted with bereaved family members of patients with advanced cancer who were admitted to palliative care units. Scores were lower in 9 of 10 domains, including not only those mentioned above, but also care coordination, environment, family burden and help with decision-making. These results on the part of bereaved family members are consistent with the few surveys investigating symptoms of patients with hematological malignancies, which have reported substantial physical and psychological distress not only at the end of life but also early in the disease course [3,5,6]. Together, these studies indicate that a change in model of palliative care is needed for patients with hematological malignancies. Importantly, this model should not only address important end-of-life and symptom needs, but also take into account unique challenges in this population of patients.
夽 Dr. Zimmermann is supported by the Rose Chair in Supportive Care, Faculty of Medicine, University of Toronto. http://dx.doi.org/10.1016/j.leukres.2016.07.012 0145-2126/© 2016 Elsevier Ltd. All rights reserved.
Palliative care for patients with hematological malignancies is unique from that for patients with solid tumors in several important ways [7]. Identifying a discrete “end-of-life” stage for these patients can be challenging, given the possibility of cure – albeit often remote – and the rapid, unpredictable decline that many of these patients experience at the end of life. Interventions such as transfusion of blood products, which may be considered “aggressive” at the end of life, may also contribute to quality of life. As well, these patients develop close relationships with their care team that may make a transfer of care difficult. Thus the standards that have been developed for a “good death” in solid tumors may need to be adjusted for patients with hematological malignancies. The gaps in palliative care that exist for patients with hematological malignancies relate to historical differences in the culture of care in palliative medicine versus that in hematology. Palliative care originated from end-of-life care for patients with solid tumors, who had a predictable disease trajectory and were referred to specialized teams for end-of-life care in hospices or palliative care units. Malignant hematology is a cure-oriented specialty, where the focus tends to be on eliminating disease, rather than on comfort and quality of life. However, this dichotomous view has been eroded on both sides. Palliative medicine is increasingly focused on providing early integrated care for patients not only at the end of life, but throughout the course of illness [8]. And malignant hematology has placed increasing emphasis on a concomitant focus on quality and quantity of life [9]. The time is thus ripe for a model of care that integrates palliative care into the care of patients with hematological malignancies from the point of diagnosis. What will an integrated model of palliative care for patients with hematological malignancies look like? This model will need to address key domains that have been defined as important in palliative care and that were included in the current survey, i.e. symptom control, psychological care, care of the family as well as the patient, coordination of care, decision-making and advance care planning. However, important additional elements will need to be incorporated. These include the capacity to provide transfusions of blood products when required for symptom control, the incorporation of unpredictability of survival into the model of care, and a focus on continuity of care, both by involving palliative care physicians early in the course of disease, and by allowing for the continued follow-up of these patients by their hematology teams. Due to the difficulties in predicting death in this population, the model of palliative care for these patients cannot be exclusively an
Commentary / Leukemia Research 48 (2016) 78–79
“end-of-life” model. Such a model will always exclude the many patients who die unexpectedly while receiving treatment directed at cure. Rather, palliative care needs to be incorporated from diagnosis into the care of these patients. This care must be collaborative between palliative care, hematology and primary care teams, with the responsibilities of each team varying according to availability and settings of care. Malignant hematologists will need to acquire additional training in palliative care, and palliative care physicians additional training in the management of hematological malignancies. With collaborative care between these teams throughout the illness, transitions will be facilitated without fear of losing contact with key team members. Importantly, misunderstandings of palliative care being synonymous with the very end of life will need to be addressed by education and consistent messaging [10]. Transfusion of blood products is cited as a barrier to palliative care in patients with leukemia and lymphoma [7] and also dictates the location of care, as it is often impossible in palliative settings. While this may be difficult to overcome in the home or hospice due to safety concerns, in palliative care units admission criteria can be re-examined to allow transfusions for symptom control. Hematology wards will remain a location of death for patients whose status declines suddenly and unexpectedly. Therefore these wards need to become places that can transition quickly and seamlessly from curative care to palliation. This transition will be eased substantially if the palliative care team has already been integrally involved throughout the illness course. Regardless of their apparent prognosis, patients with hematological malignancies require control of physical and psychological symptoms, and preparation for the possibility of death related to their disease or its treatment. This can only be achieved by integrating two aspects of care that have traditionally been counterpoised: palliation and curative treatment. Once we realize that these are not distinct philosophies, but have the shared goal of improving care for the patient, then we can proceed to develop models that stem from collaboration. References [1] C.C. Earle, M.B. Landrum, J.M. Souza, B.A. Neville, J.C. Weeks, J.Z. Ayanian, Aggressiveness of cancer care near the end of life: is it a quality-of-care issue? J. Clin. Oncol. 26 (August (23)) (2008) 3860–3866. [2] D.A. Howell, R. Shellens, E. Roman, A.C. Garry, R. Patmore, M.R. Howard, Haematological malignancy: are patients appropriately referred for specialist palliative and hospice care? A systematic review and meta-analysis of published data, Palliat. Med. 25 (September (6)) (2011) 630–641. [3] C. Zimmermann, D. Yuen, A. Mischitelle, M.D. Minden, J.M. Brandwein, A. Schimmer, L. Gagliese, C. Lo, A. Rydall, G. Rodin, Symptom burden and supportive care in patients with acute leukemia, Leuk. Res. 37 (July (7)) (2013) 731–736. [4] Y. Shirai, M. Miyashita, M. Kawa, T. Motokura, F. Sano, T. Fukuda, K. Oshimi, K. Kazuma, Evaluation of care for leukemia and lymphoma patients during their last hospitalization from the perspective of the bereaved family, Leuk. Res. 47 (August) (2016) 93–99. [5] V. Manitta, R. Zordan, M. Cole-Sinclair, H. Nandurkar, J. Philip, The symptom. burden of patients with hematological malignancy: a cross-sectional observational study, J. Pain Symptom Manage. 42 (September (3)) (2011) 432–442. [6] G. Rodin, D. Yuen, A. Mischitelle, M.D. Minden, J. Brandwein, A. Schimmer, C. Marmar, L. Gagliese, C. Lo, A. Rydall, C. Zimmermann, Traumatic stress in acute leukemia, Psychooncology 22 (February (2)) (2013) 299–307. [7] O.O. Odejide, D.Y. Salas Coronado, C.D. Watts, A.A. Wright, G.A. Abel, End-of-life care for blood cancers: a series of focus groups with hematologic oncologists, J Oncol. Pract. 10 (November (6)) (2014) e396–403. [8] C. Zimmermann, N. Swami, M. Krzyzanowska, B. Hannon, N. Leighl, A. Oza, M. Moore, A. Rydall, G. Rodin, I. Tannock, A. Donner, C. Lo, Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial, Lancet 383 (May (9930)) (2014) 1721–1730. [9] C. Chomienne, M. Guenova, A. Hagenbeek, C. Lacombe, S. McCann, S. Salek, J. Geissler, I. vanderBeek, Quality of life in hematology: European Hematology Association theme of the year and years to come, Haematologica 98 (January (1)) (2013) 2–3. [10] C. Zimmermann, N. Swami, M. Krzyzanowska, N. Leighl, A. Rydall, G. Rodin, I. Tannock, B. Hannon, Perceptions of palliative care among patients with advanced cancer and their caregivers, CMAJ (April) (2016).
79
Camilla Zimmermann a,b,c,∗ Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Canada b Campbell Family Research Institute, Princess Margaret Cancer Centre, University Health Network, University of Toronto, Toronto, Canada c Division of Medical Oncology, Department of Medicine, University of Toronto, Toronto, Canada a
∗ Corresponding author at: Professor of Medicine, Department of Supportive Care, Princess Margaret Cancer Centre, 610 University Ave. 16-712, Toronto, Ontario M5G 2M9, Canada. E-mail address: [email protected]
9 July 2016 22 July 2016 Available online 29 July 2016
Contents lists available at ScienceDirect
Leukemia Research journal homepage: www.elsevier.com/locate/leukres
Commentary
Palliative care for patients with hematological malignancies: Time for a new model夽
Palliative care for patients with hematological malignancies is receiving increasing attention. Compared to patients with solid tumors, patients with leukemia, lymphoma and myeloma more often die on medical wards, rather than at home or in hospices, and receive more aggressive care [1]. As well, advance care planning tends to be neglected, and palliative care teams are often absent or involved very late in the course of illness [2,3]. These challenges have been reported consistently across international settings. However, this research has tended to rely on administrative databases, and the perspective of patients and their family members has often been missing. In this issue, Shirai et al. report results from a survey of bereaved family members of patients with leukemia and lymphoma who died in 4 university hospitals in Tokyo [4]. The respondents evaluated the care provided during the patients’ last hospitalization, reporting on satisfaction with care and “good death” factors. A majority of caregivers reported that they were not satisfied with the care provided during the patient’s last hospitalization. Although almost 80% felt that the medical staff had always cared for the patient with respect, only one third agreed that the patient had been relieved as far as possible of pain and physical distress, and less than one quarter agreed that there had been adequate relief of psychological distress. Results were also compared those of a similar survey conducted with bereaved family members of patients with advanced cancer who were admitted to palliative care units. Scores were lower in 9 of 10 domains, including not only those mentioned above, but also care coordination, environment, family burden and help with decision-making. These results on the part of bereaved family members are consistent with the few surveys investigating symptoms of patients with hematological malignancies, which have reported substantial physical and psychological distress not only at the end of life but also early in the disease course [3,5,6]. Together, these studies indicate that a change in model of palliative care is needed for patients with hematological malignancies. Importantly, this model should not only address important end-of-life and symptom needs, but also take into account unique challenges in this population of patients.
夽 Dr. Zimmermann is supported by the Rose Chair in Supportive Care, Faculty of Medicine, University of Toronto. http://dx.doi.org/10.1016/j.leukres.2016.07.012 0145-2126/© 2016 Elsevier Ltd. All rights reserved.
Palliative care for patients with hematological malignancies is unique from that for patients with solid tumors in several important ways [7]. Identifying a discrete “end-of-life” stage for these patients can be challenging, given the possibility of cure – albeit often remote – and the rapid, unpredictable decline that many of these patients experience at the end of life. Interventions such as transfusion of blood products, which may be considered “aggressive” at the end of life, may also contribute to quality of life. As well, these patients develop close relationships with their care team that may make a transfer of care difficult. Thus the standards that have been developed for a “good death” in solid tumors may need to be adjusted for patients with hematological malignancies. The gaps in palliative care that exist for patients with hematological malignancies relate to historical differences in the culture of care in palliative medicine versus that in hematology. Palliative care originated from end-of-life care for patients with solid tumors, who had a predictable disease trajectory and were referred to specialized teams for end-of-life care in hospices or palliative care units. Malignant hematology is a cure-oriented specialty, where the focus tends to be on eliminating disease, rather than on comfort and quality of life. However, this dichotomous view has been eroded on both sides. Palliative medicine is increasingly focused on providing early integrated care for patients not only at the end of life, but throughout the course of illness [8]. And malignant hematology has placed increasing emphasis on a concomitant focus on quality and quantity of life [9]. The time is thus ripe for a model of care that integrates palliative care into the care of patients with hematological malignancies from the point of diagnosis. What will an integrated model of palliative care for patients with hematological malignancies look like? This model will need to address key domains that have been defined as important in palliative care and that were included in the current survey, i.e. symptom control, psychological care, care of the family as well as the patient, coordination of care, decision-making and advance care planning. However, important additional elements will need to be incorporated. These include the capacity to provide transfusions of blood products when required for symptom control, the incorporation of unpredictability of survival into the model of care, and a focus on continuity of care, both by involving palliative care physicians early in the course of disease, and by allowing for the continued follow-up of these patients by their hematology teams. Due to the difficulties in predicting death in this population, the model of palliative care for these patients cannot be exclusively an
Commentary / Leukemia Research 48 (2016) 78–79
“end-of-life” model. Such a model will always exclude the many patients who die unexpectedly while receiving treatment directed at cure. Rather, palliative care needs to be incorporated from diagnosis into the care of these patients. This care must be collaborative between palliative care, hematology and primary care teams, with the responsibilities of each team varying according to availability and settings of care. Malignant hematologists will need to acquire additional training in palliative care, and palliative care physicians additional training in the management of hematological malignancies. With collaborative care between these teams throughout the illness, transitions will be facilitated without fear of losing contact with key team members. Importantly, misunderstandings of palliative care being synonymous with the very end of life will need to be addressed by education and consistent messaging [10]. Transfusion of blood products is cited as a barrier to palliative care in patients with leukemia and lymphoma [7] and also dictates the location of care, as it is often impossible in palliative settings. While this may be difficult to overcome in the home or hospice due to safety concerns, in palliative care units admission criteria can be re-examined to allow transfusions for symptom control. Hematology wards will remain a location of death for patients whose status declines suddenly and unexpectedly. Therefore these wards need to become places that can transition quickly and seamlessly from curative care to palliation. This transition will be eased substantially if the palliative care team has already been integrally involved throughout the illness course. Regardless of their apparent prognosis, patients with hematological malignancies require control of physical and psychological symptoms, and preparation for the possibility of death related to their disease or its treatment. This can only be achieved by integrating two aspects of care that have traditionally been counterpoised: palliation and curative treatment. Once we realize that these are not distinct philosophies, but have the shared goal of improving care for the patient, then we can proceed to develop models that stem from collaboration. References [1] C.C. Earle, M.B. Landrum, J.M. Souza, B.A. Neville, J.C. Weeks, J.Z. Ayanian, Aggressiveness of cancer care near the end of life: is it a quality-of-care issue? J. Clin. Oncol. 26 (August (23)) (2008) 3860–3866. [2] D.A. Howell, R. Shellens, E. Roman, A.C. Garry, R. Patmore, M.R. Howard, Haematological malignancy: are patients appropriately referred for specialist palliative and hospice care? A systematic review and meta-analysis of published data, Palliat. Med. 25 (September (6)) (2011) 630–641. [3] C. Zimmermann, D. Yuen, A. Mischitelle, M.D. Minden, J.M. Brandwein, A. Schimmer, L. Gagliese, C. Lo, A. Rydall, G. Rodin, Symptom burden and supportive care in patients with acute leukemia, Leuk. Res. 37 (July (7)) (2013) 731–736. [4] Y. Shirai, M. Miyashita, M. Kawa, T. Motokura, F. Sano, T. Fukuda, K. Oshimi, K. Kazuma, Evaluation of care for leukemia and lymphoma patients during their last hospitalization from the perspective of the bereaved family, Leuk. Res. 47 (August) (2016) 93–99. [5] V. Manitta, R. Zordan, M. Cole-Sinclair, H. Nandurkar, J. Philip, The symptom. burden of patients with hematological malignancy: a cross-sectional observational study, J. Pain Symptom Manage. 42 (September (3)) (2011) 432–442. [6] G. Rodin, D. Yuen, A. Mischitelle, M.D. Minden, J. Brandwein, A. Schimmer, C. Marmar, L. Gagliese, C. Lo, A. Rydall, C. Zimmermann, Traumatic stress in acute leukemia, Psychooncology 22 (February (2)) (2013) 299–307. [7] O.O. Odejide, D.Y. Salas Coronado, C.D. Watts, A.A. Wright, G.A. Abel, End-of-life care for blood cancers: a series of focus groups with hematologic oncologists, J Oncol. Pract. 10 (November (6)) (2014) e396–403. [8] C. Zimmermann, N. Swami, M. Krzyzanowska, B. Hannon, N. Leighl, A. Oza, M. Moore, A. Rydall, G. Rodin, I. Tannock, A. Donner, C. Lo, Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial, Lancet 383 (May (9930)) (2014) 1721–1730. [9] C. Chomienne, M. Guenova, A. Hagenbeek, C. Lacombe, S. McCann, S. Salek, J. Geissler, I. vanderBeek, Quality of life in hematology: European Hematology Association theme of the year and years to come, Haematologica 98 (January (1)) (2013) 2–3. [10] C. Zimmermann, N. Swami, M. Krzyzanowska, N. Leighl, A. Rydall, G. Rodin, I. Tannock, B. Hannon, Perceptions of palliative care among patients with advanced cancer and their caregivers, CMAJ (April) (2016).
79
Camilla Zimmermann a,b,c,∗ Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Canada b Campbell Family Research Institute, Princess Margaret Cancer Centre, University Health Network, University of Toronto, Toronto, Canada c Division of Medical Oncology, Department of Medicine, University of Toronto, Toronto, Canada a
∗ Corresponding author at: Professor of Medicine, Department of Supportive Care, Princess Margaret Cancer Centre, 610 University Ave. 16-712, Toronto, Ontario M5G 2M9, Canada. E-mail address: [email protected]
9 July 2016 22 July 2016 Available online 29 July 2016