TO THE EDITOR:

Patients with hematological malignancies (HMs) have less access to palliative care (PC) than other patients with cancer and benefit from it later on in the course of their disease, although symptom burden is just as heavy.1-4  We created a specialized outpatient PC consultation in the hematology department to improve the quality of patient management and enhance cooperation with hematologists. We found that although patient characteristics and survival were extremely variable, they all had in common a need for symptom management and care coordination. As a result of the consultation, hematology teams called upon a specialized PC multidisciplinary team more often to meet patients hospitalized within their departments, and more patients with HMs were hospitalized in PC units.

Recent evidence has demonstrated the feasibility, acceptability, and efficacy of integrating PC to improve the quality of life and care of patients with HMs and their caregivers.5-7  Despite clear recommendations to integrate PC in oncology, and in particular, hematooncology, the question of what, when, and how to integrate it has yet to be answered.8  The constructs of integration plans are needed, adapted to national, regional, and local organizations of oncology and palliative care, as well as to the culture of the organization.

This new real-world intervention consisted of opening a specialized PC consultation one half day per week in 2018 by a doctor trained in both hematology and PC in a University Hospital that has the status of Regional Reference Center in Hematology in Northern France. Patients were referred by hematologists via direct contact between physicians, who discussed the indication before informing patients of the referral. PC consultation was directed to patients with aggressive and potentially mortal HMs and their families. The overall objective was to improve patient and family quality of life by improving symptom burden, in particular, in complex situations.

Information on the goals, criteria, and practical modalities of patient referral to PC consultation was provided to the hematologists who referred the patient. The same team also received training sessions on the benefits of early PC for patients with a malignancy, and particularly for patients with HMs. PC consultation was not advertised to general practitioners, patients, or families, as hematologists feared that the term “palliative” would trigger negative representations.

Twenty-three patients were followed up over a 1-year period (Table 1). Average age was 75 years (range: 40 to 93), and 12 patients were women (Table 1). Disease distribution was comparable to disease distribution in the hematology department: 13% myeloma, 56.5% lymphoma, 30.5% myeloid diseases. Three patients had been allogeneic-hematopoietic-stem cell transplanted, and 1 patient had been treated with chimeric antigen receptor T cells.

Table 1.

General characteristics of patients

PatientsAge, ySexDiseaseHSCT or CAR T cellPrevious contact with PC teamReferred byHematology follow-upSurvival after first consultation, dOncologic treatmentNumber of consultationsReferrals to emergency departmentNumber of hospitalizations and length of stay, dTime between consultation and hospitalization, dBlood transfusionsPlace of death
P1 78 AML No No Hematologist Yes 86 No 2 (7 + 13) 43 PC department 
P2 73 Diffuse B lymphoma No No Hematologist No 112 Yes, radiotherapy 1 (5) 107 Medical department 
P3 80 Myeloma No No Hematologist Yes No 1 (7) Medical department 
P4 84 AML No No Hematologist No 33 No  Home 
P5 82 Diffuse B lymphoma No Yes PC department No 26 Yes, radiotherapy  Home 
P6 62 Myeloma Yes No Hematologist No 59 No  Home 
P7 79 AML No No Hematologist Yes 97 No  Home 
P8 40 Hodgkin lymphoma Yes No Hematologist Yes 70 Yes, target therapy 1 (1) 69 PC department 
P9 83 MDS No Yes Hematologist Yes 63 No 2 (2 + 5) PC department 
P10 88 Mantle cell lymphoma No No Hematologist No 335  Yes, target therapy  
P11 88 Hodgkin lymphoma No No Hematologist No 24 No 1 (23) PC department 
P12 88 AML No No Hematologist No No 1 (9) PC department 
P13 81 Myeloma No No Hematologist Yes 101 Yes, IV chemotherapy 1 (2) 99 Emergency department 
P14 60 T lymphoma No No Hematologist Yes 186 Yes, oral chemotherapy 1 (25) 166  
P15 80 Mantle cell lymphoma No No Hematologist No 32 Yes, oral chemotherapy 1 (18) 13 PC department 
P16 82 Hodgkin lymphoma No No Hematologist Yes 159 Yes, oral chemotherapy   
P17 85 T lymphoma No No Hematologist Yes 123 No   
P18 92 Burkitt lymphoma No No Hematologist No 109 Yes, targeted therapy  Home 
P19 63 Diffuse B lymphoma Yes No Hematologist No 122 No 1 (12) 98 Home 
P20 52 Diffuse B lymphoma No No Hematologist Yes 109 Yes, targeted therapy   
P21 85 AML No No Hematologist No 14 Yes, oral chemotherapy 1 (10) Medical department 
P22 41 ALL Yes No Hematologist No 28 No 1 (1) 28 PC department 
P23 93 Diffuse B lymphoma No No Hematologist Yes 18 Yes, oral chemotherapy   
PatientsAge, ySexDiseaseHSCT or CAR T cellPrevious contact with PC teamReferred byHematology follow-upSurvival after first consultation, dOncologic treatmentNumber of consultationsReferrals to emergency departmentNumber of hospitalizations and length of stay, dTime between consultation and hospitalization, dBlood transfusionsPlace of death
P1 78 AML No No Hematologist Yes 86 No 2 (7 + 13) 43 PC department 
P2 73 Diffuse B lymphoma No No Hematologist No 112 Yes, radiotherapy 1 (5) 107 Medical department 
P3 80 Myeloma No No Hematologist Yes No 1 (7) Medical department 
P4 84 AML No No Hematologist No 33 No  Home 
P5 82 Diffuse B lymphoma No Yes PC department No 26 Yes, radiotherapy  Home 
P6 62 Myeloma Yes No Hematologist No 59 No  Home 
P7 79 AML No No Hematologist Yes 97 No  Home 
P8 40 Hodgkin lymphoma Yes No Hematologist Yes 70 Yes, target therapy 1 (1) 69 PC department 
P9 83 MDS No Yes Hematologist Yes 63 No 2 (2 + 5) PC department 
P10 88 Mantle cell lymphoma No No Hematologist No 335  Yes, target therapy  
P11 88 Hodgkin lymphoma No No Hematologist No 24 No 1 (23) PC department 
P12 88 AML No No Hematologist No No 1 (9) PC department 
P13 81 Myeloma No No Hematologist Yes 101 Yes, IV chemotherapy 1 (2) 99 Emergency department 
P14 60 T lymphoma No No Hematologist Yes 186 Yes, oral chemotherapy 1 (25) 166  
P15 80 Mantle cell lymphoma No No Hematologist No 32 Yes, oral chemotherapy 1 (18) 13 PC department 
P16 82 Hodgkin lymphoma No No Hematologist Yes 159 Yes, oral chemotherapy   
P17 85 T lymphoma No No Hematologist Yes 123 No   
P18 92 Burkitt lymphoma No No Hematologist No 109 Yes, targeted therapy  Home 
P19 63 Diffuse B lymphoma Yes No Hematologist No 122 No 1 (12) 98 Home 
P20 52 Diffuse B lymphoma No No Hematologist Yes 109 Yes, targeted therapy   
P21 85 AML No No Hematologist No 14 Yes, oral chemotherapy 1 (10) Medical department 
P22 41 ALL Yes No Hematologist No 28 No 1 (1) 28 PC department 
P23 93 Diffuse B lymphoma No No Hematologist Yes 18 Yes, oral chemotherapy   

ALL, acute lymphoid leukemia; AML, acute myeloid leukemia; F, female; HSCT, allogeneic stem cell transplantation; M, male; MDS, myelodysplastic syndrome.

During this consultation, treatments for nociceptive pain relief were introduced for 13 patients (56.5%), and treatment of neuropathic pain was introduced in 1 patient. Anxiolytics were introduced or modified for 6 patients, and psychological counseling was begun for 4 patients. Of the patients, 52% described psychological symptoms that were deemed “difficult.” Laxatives, treatments for oral mycosis, and digestive discomfort were prescribed. Infections were also managed and treated. A total of 87% of patients presented uncomfortable symptoms that required treatment (Table 2). This confirms the need for global palliative assessment and management of patients with advanced HMs.2  An advanced care plan was discussed and written with 19 patients. It was systematically sent by mail to all other health care professionals involved with the patient. In 14 cases, the home care plan was enhanced with the intervention of a nurse, a nurse’s aide, or a live-in caregiver (Table 2). Treatments deemed futile or inappropriate were discussed with the general practitioner either upon initiation of PC or later in the course of evolution for 14 patients. Blood transfusions were limited or terminated in 7 patients, at their request, after a discussion with hematologists and their general practitioner (Table 2). Discussions on the matter between PC physician and hematologists occurred twice.

Table 2.

PC need

PatientPainAnxietyOther symptomsReferralsHome care planPrescription modificationLimitation of blood transfusionsAdvance care planningMultidisciplinary management
P1 Yes Yes Constipation No Yes Yes No Yes Yes/home care support team 
P2 Yes Yes Constipation, hypercalcemia Yes Yes Yes No Yes Yes/home care support team 
P3 Yes Yes  No No Yes No Yes Yes/multidisciplinary PC team 
P4 Yes No Nausea, oral mycosis No Yes No Yes Yes Yes/home care support team 
P5 Yes No Constipation, bleeding symptoms Yes No Yes No Yes Yes/PC department 
P6 No Yes Astenia No Yes Yes Yes Yes Yes/multidisciplinary PC team 
P7 No Yes  No Yes Yes Yes Yes No 
P8 Yes Yes Constipation, arthralgia, myalgia fewer Yes Yes No No Yes Yes/home care support team 
P9 No Yes Constipation, dry mouth No Yes Yes Yes Yes Yes/multidisciplinary PC team 
P10 No Yes Diarrhea, dyspnea Yes Yes No No Yes Yes/home care support team 
P11 No Yes Diarrhea, dyspnea No No No No No Yes/PC department 
P12 Yes No Dyspnea No No No Yes No Yes/PC department 
P13 No No  No No Yes No Yes No 
P14 Yes Yes Oral mycosis No Yes Yes No Yes Yes/home care support team 
P15 Yes Yes Nausea, constipation No Yes No No Yes Yes/home care support team and PC department 
P16 Yes No Constipation Yes Yes No No Yes Yes/home care support team 
P17 No No  No No Yes No Yes Yes/home care support team 
P18 No No  No No Yes No Yes Yes/Home hospitalization 
P19 Yes No Clostridium infection, dysphagia Yes No Yes No Yes Yes/PC department and home hospitalization 
P20 Yes No  No No No No No No 
P21 No No Astenia, malaise No Yes No Yes Yes No 
P22 Yes Yes Bleeding, cystitis No Yes Yes Yes Yes Yes/PC department 
P23 No No Astenia, oral mycosis No Yes Yes No Yes Yes/home care support team 
PatientPainAnxietyOther symptomsReferralsHome care planPrescription modificationLimitation of blood transfusionsAdvance care planningMultidisciplinary management
P1 Yes Yes Constipation No Yes Yes No Yes Yes/home care support team 
P2 Yes Yes Constipation, hypercalcemia Yes Yes Yes No Yes Yes/home care support team 
P3 Yes Yes  No No Yes No Yes Yes/multidisciplinary PC team 
P4 Yes No Nausea, oral mycosis No Yes No Yes Yes Yes/home care support team 
P5 Yes No Constipation, bleeding symptoms Yes No Yes No Yes Yes/PC department 
P6 No Yes Astenia No Yes Yes Yes Yes Yes/multidisciplinary PC team 
P7 No Yes  No Yes Yes Yes Yes No 
P8 Yes Yes Constipation, arthralgia, myalgia fewer Yes Yes No No Yes Yes/home care support team 
P9 No Yes Constipation, dry mouth No Yes Yes Yes Yes Yes/multidisciplinary PC team 
P10 No Yes Diarrhea, dyspnea Yes Yes No No Yes Yes/home care support team 
P11 No Yes Diarrhea, dyspnea No No No No No Yes/PC department 
P12 Yes No Dyspnea No No No Yes No Yes/PC department 
P13 No No  No No Yes No Yes No 
P14 Yes Yes Oral mycosis No Yes Yes No Yes Yes/home care support team 
P15 Yes Yes Nausea, constipation No Yes No No Yes Yes/home care support team and PC department 
P16 Yes No Constipation Yes Yes No No Yes Yes/home care support team 
P17 No No  No No Yes No Yes Yes/home care support team 
P18 No No  No No Yes No Yes Yes/Home hospitalization 
P19 Yes No Clostridium infection, dysphagia Yes No Yes No Yes Yes/PC department and home hospitalization 
P20 Yes No  No No No No No No 
P21 No No Astenia, malaise No Yes No Yes Yes No 
P22 Yes Yes Bleeding, cystitis No Yes Yes Yes Yes Yes/PC department 
P23 No No Astenia, oral mycosis No Yes Yes No Yes Yes/home care support team 

Between the first consultation and patient's death, only 8 patients were addressed to the emergency department, 7 of which led to hospitalization ending with death. Eight patients were hospitalized without passing through the emergency department. Mean time between the first PC consultation and hospitalization was 52 days (range, 1 to 107) (Table 1). Among the 17 patients who died during the 12-month period, one was lost to follow-up, 6 died at home as per their advanced care plan, 11 died at hospital, 7 died in a PC department, and 1 died in an emergency department short-stay unit (Table 1). As per the criteria of Earle et al of aggressive care in end-of-life cancer treatment, no patient received IV chemotherapy <14 days before death, nor was any patient hospitalized in intensive care, sent to the emergency department more than once, or hospitalized within the last month of life.3,9,10 

PC-hematology collaboration was enhanced: between 2014 and 2017; inpatients with HMs represented 4.5% of patients followed by the inpatient multidisciplinary PC team, whereas after setting up PC consultation, their numbers increased to 5.7%. Moreover, 70% (10.5 vs 18 patients) (Student t test; P < .05) more hematology patients were hospitalized in a PC unit in 2018 to 2019, after PC consultation initiation. Unformal training through discussions and bedside care was also achieved by means of this collaboration.

One limiting factor was the referral of patients by hematologists alone. Although hematologists are the most legitimate to introduce PC into the privileged patient-doctor relationship, and although they acknowledge that access to specialized PC care improves quality of end of life, barriers to addressing patients to PC specialists remain.11-14  This could explain the small number of referrals over a 12-month period, despite the fact that PC consultations were conducted by a hematologist better able to overcome cultural barriers to PC integration and trust issues that have been discussed in multiple studies as potential barriers to PC integration.4  A Spanish study has previously demonstrated the benefits of a specialized PC consultation with a physician trained in both PC and hematology among patients with multiple myeloma. In this study, patients were recruited via the PC team: a PC nurse presented the benefits of consultation over the phone to all multiple myeloma patients that were progressing.15  Another limitation is that there may be few hematologists trained in PC, so that this model may not easily be reproducible elsewhere. In any case, facilitating patient access to PC consultations and increasing collaboration probably require PC training to be reiterated regularly among hematologists. Informing patients, families, and general practitioners of the possibility also seems crucial on the path to providing patients with more autonomy in the management their severe disease and end of life.

Another question raised by this PC consultation is that of the allotment of responsibilities between hematologists and PC doctor: when the patient is hospitalized in hematology, the specialized PC team provides expertise to hematologists but does not prescribe, but in the outpatient setting, the PC doctor can prescribe. Although prescriptions for symptom management were not systematically discussed with the referring hematologist, he was called upon every time there was talk of discontinuing oncological treatments. This is an area that has worried hematologists historically: there is a fear that PC specialists might “talk their patients out of curative/helpful treatments.”3,16-18 

The quality of PC implementation for HM patients in the outpatient setting was improved by setting up a specialized PC consultation within the Hematology Department. Nevertheless, collaboration is still under construction to overcome cultural barriers and allow peaceful trust between the 2 teams.

For data sharing, please contact the corresponding author at: chloe_prodhomme@hotmail.com.

Contribution: C.P. performed the research; C.P. and M.P. analyzed the data; C.P. and L.T. wrote the paper; C.P. and T.F. designed the research; C.P., L.T., M.P., L.C., L.B., and H.L. are a part of the interdisciplinary palliative care team that worked with hospitalized hematology patients; and C.B., V.C., S.B., D.B., M.D.C., L.G., and S.M. addressed patients to palliative care consultation.

Conflict-of-interest disclosure: The authors declare no competing financial interests.

Correspondence: Chloé Prod’homme, University of Lille, CNRS, CHU Lille, Palliative Care Unit, F-59000 Lille, France; e-mail: chloe_prodhomme@hotmail.com.

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