Patients with haematological malignancy experience high rates of chemotherapy and supportive care use at the end of life, but many are only referred to palliative care a short time before death, according to findings presented at Blood 2023.

Dr Briony Shaw, a clinical and laboratory haematologist at Monash Health, Melbourne, and NHMRC-funded PhD candidate, said doctors needed to be mindful of deterioration in this patient group, especially for those not in hospital.

She said concurrent care with defined parameters for referral to specialist palliative care should be encouraged so that patients could receive disease modifying or even curative therapies alongside their symptom management and other supports.

Goals of care should also be established early beyond just resuscitation status, such as how much treatment the patient wants and even the location of death.

“Haematology patients differ from those with solid organ malignancy at end of life in which a lot of the literature is published,” Dr Shaw told delegates at the Melbourne meeting.

“Our patients often don’t have the traditional symptoms which more obviously trigger a referral to the palliative care team. However, physical and psychological symptoms are often present and symptoms such as fatigue often go unnoticed.

“Palliative care provides benefits such as psychological support to the patient and their family, access to other allied health and bereavement services after death.”

Study findings

Dr Shaw presented her retrospective study of 229 patients (median age 77 [range 24-99], 65% male) with haematological malignancies from five outer metropolitan hospitals in Melbourne who died between October 2019 and July 2022.

Of the patients, 58% were born overseas and 18% had non-English speaking backgrounds, with many cultures and religions represented, Dr Shaw noted.

Underlying haematological malignancies were predominantly acute myeloid leukaemia and aggressive B-cell lymphoma, including diffuse large B-cell lymphoma and Burkitt lymphoma, with myeloma and MDS also well represented.

Within 30 days of death, 65% presented to ED, 22% had an ICU admission and 22% had an invasive procedure, while 40% spent their last two weeks in hospital.

When it came to treatment and supportive care within 30 days of death, 61% had red cell transfusion, 48% had cytotoxic therapy and 46% had platelet transfusion.

Some 61% of patients had intravenous antibiotics in their last seven days.

She said 74% of patients were referred to palliative care, of whom 72% were referred in their last 30 days of life and one-third in their last five days of life.

The median time from referral to death was 13 days.

More than half of patients died in hospital (55%).

Locations of death included the ward (38%), hospice (30%), ICU (11%), at home (9%), aged care (7%) and the ED (6%). This compared to 15% and 30% of the general population dying at home or in aged care respectively.

“Our patients are often transfusion dependent, which links them quite closely to the hospital system, they have complications like infection, which result in IV antibiotics and again hospitalisation, and bleeding risk,” Dr Shaw said.

In terms of treatment, 37 patients were on a clinical trial, 56 were undergoing intensive chemotherapy, salvage therapy or autologous SCT, 53 were receiving non-intensive therapy such as azacitidine, subcut cytarabine or lenalidomide, and 58 were under active monitoring but no therapy, such as transfusion support only.

Dr Shaw said unsurprisingly those on a clinical trial were at least two times more likely to have therapy, platelets or an ICU admission within 30 days of death, and they were not any less likely to be referred to palliative care or die in hospital.

However, patients receiving non-intensive therapy were more than three times as likely to receive therapy within seven days of death and more than two times as likely to receive red cell transfusion within 30 days of death, “potentially going somewhat unnoticed in terms of their deterioration”, Dr Shaw noted.

While the numbers were small, patients with MDS were less likely to be referred to palliative care despite MDS often being associated with increased age and frailty.

Those not on any therapy were more likely to have a resuscitation limitation and to not be admitted to intensive care, but had no difference in palliative care referral.

Dr Shaw said quality indicators for end of life care should be developed.

“This has been done in solid organ malignancy but again our patients differ and those may not be warranted in our patients who receive a lot more aggressive interventions at end of life. Developing signposts for deterioration and dying is really important to give clear indicators of when to cease active therapy,” she said.