End of Life Care in Lymphoma Compromised by Late Recognition of Dying

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Half of patients with lymphoma are only identified as dying within one day of their death, meaning end of life care is limited, shows a revealing study that explored how such care could be improved for patients with lymphoma.

Dr Gehan Soosaipillai, medical oncology registrar at Barts Health NHS Trust, London, gave a talk at this year’s British Society of Haematology (BSH) virtual meeting on transforming end of life care for patients with lymphoma. The study was conducted in the haematology department of University College London Hospitals (UCLH) NHS Foundation Trust, and was carried out as part of the work of UCLH’s Transforming End of Life Care team. 

“There’s a need to identify patients with lymphoma at around a year before the end of life so we can properly support them rather than leaving it to the last minute when patients are often incapable of stating preferences because they’re too unwell,” said Dr Soosaipillai. “Often if the dying patient is only identified within a day of death or on the last day of life, it is not giving the family much chance to come in,” he emphasised.

Dr Caroline Stirling, consultant in palliative medicine, Camden, Islington ELiPSe and UCLH & HCA Palliative Care Service, London, commented on the study. “There is a growing body of evidence demonstrating the realities and challenges of recognising and caring for patients with haematological malignancies towards the end of life,” she said.

“This project demonstrates the impact that working alongside a lymphoma multi-disciplinary team can have on patient and family experience, location of death and staff experience. Opportunities for sharing the work and model should be explored.”

Dr Richard Hinton, haematologist at Imperial College Healthcare NHS Trust, London, also welcomed the work saying, “This is an interesting and contributory study highlighting some of the shortcomings in end of life care in haemato-oncology. Strategies to tackle these issues are clearly needed and the TEOLC [Transforming End of Life Care] team clearly have admirable aspirations.”

Only One Chance to Get End of Life Care Right

Around 28% of all deaths in the UK are due to cancer, according to Cancer Research UK, and there is only one chance to get end of life care right for patients and those close to them, said Dr Soosaipillai, adding that certain aspects of end of life care remain a challenge for many clinicians.

End of life care is based on four core principles, explained the clinician-researcher. These are recognising the dying patient and initiating the Excellent Care in the Last Days of Life (ECILDOL) care plan, with an individual care plan when appropriate; compassionate communication – for example, discussions around Do Not Attempt Cardiopulmonary Resuscitation and Treatment Escalation Plan; care planning; and collaborative working across hospital and community settings.

The aim of the study was to determine the confidence of haematology staff related to end of life care, and to understand delivery of such care to patients with lymphoma.

“We met with clinical leads and key contacts and collaborated on ward rounds and clinics. We also audited the last 10 lymphoma deaths guided by the Transforming End of Life Care framework as part of a needs analysis,” explained Dr Soosaipillai. A staff confidence questionnaire issued pre- and post-intervention was also conducted. Thirty-one haematology staff members completed the questionnaire (nurses n = 25; doctors n = 4; allied health professionals n = 2).

On the back of the needs analysis an intervention was also implemented (not a direct objective of the study), entailing support on the ward with weekly consultant ward rounds to identify patients, and a multidisciplinary teaching programme. This aimed to facilitate the recognition of patients in the last year/days of life, having difficult conversations (on subjects such as cardio-pulmonary resuscitation and treatment escalation planning), delivering personalised advance care planning, facilitating end of life care discharge, providing after-death care and staff support by incorporating ‘coffee and catch up’ and debriefs.  

Time From Recognition of Dying and Death

Of the last 10 deaths in the audit, 40% were in the haematology unit, and another 40% in the intensive care unit (ICU), 10% were in privately funded rooms, and 10% in the infectious disease unit.

“A large proportion are admitted to intensive care at this stage due to toxicities related to treatment. Is it appropriate to be hooked up to machines in the last days of life?” Dr Soosaipillai remarked. “But it is difficult if the patient has a reversible cause for their decline, they are admitted to ICU, and then the patient deteriorates for other reasons.”

Considering the number of days from completion of the Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) and Treatment Escalation Plan (TEP) discussions until death, results showed that 50% were between 1-3 days for DNACPR, and within 14 days prior to death for TEP.

Recognition of the likelihood of dying and death was one day or less in 50% of cases, and 2 to 3 days in a further 20%. Only 10% of patients had more than 7 days between recognition of dying and death.

Dr Soosaipillai, who used to work in oncology, said it was often difficult to tell when a haematology patient as opposed to an oncology patient, will deteriorate. “There is much more of a culture to involve palliative care with oncology than haematology patients. The treatments for haematology tend to keep the cancer at bay, and then rapid deterioration occurs,” he remarked.

“The lymphoma team at UCLH treat complex patients including those undergoing bone marrow transplants and chimeric antigen receptor T-cell (CAR-T) therapy,” he noted. “Lymphoma patients often have uncertain trajectories, indistinct transitions, and difficulties predicting prognosis. It is also difficult to identify if, and when, to withdraw treatment, and patients often have a complicated dying phase.

“A major finding was that having conversations with patients about preferred place of care and preferred place of death was not often done. Through our work, having more open conversations, we managed to fast track patients out of hospital to die at home,” Dr Soosaipillai emphasised.

There were 11 questions in the staff (31-33 respondents) questionnaire based on the Transforming End of Life Care framework. At the study start, almost half (14/31) of the participants felt ‘not so confident/not at all confident’ in being able to sensitively ask patients or their family about what matters to them the most. Ten out of 29 participants felt ‘not so confident/not at all confident’ in initiating and using the Excellent Care in the Last Days of Life care plan. A large majority (25/28) of the participants felt ‘not so confident/not at all confident’ in suggesting or completing a Coordinate My Care record.

“We found that over the 7 month period, pre- to post-intervention, there was an increase in confidence in recognising when a patient is in the last year of life. In terms of collaborating with community services and discharging home for end of life care, staff became much more confident. This can be really complicated,” Dr Soosaipillai pointed out.

After Death, Bereavement Service

In terms of after-death care to the family, in 60% of cases there was evidence of support given, and in 40% of cases there was evidence of written support provided to the family.

In fact, the team set up an enhanced bereavement support service on the back of this research, remarked Dr Soosaipillai. “We established a service whereby the family of anyone who died receives a phone call to provide signposts to other services if needed.”

Impact of COVID-19 on End of Life Care in Patients With Lymphoma

Patients on systemic anti-cancer treatment and immunocompromised were shielded, while there was limited attendance on ward rounds and interaction with patients due to risk of COVID-19.

“We reduced the number of inpatients, and fewer patients were discharged home for end of life care. There was also some training needed for redeployed staff. We used phone calls to continue reviewing patients at end of life and supported their families. Bereavement support and follow-up for families was also provided,” explained Dr Soosaipillai.

Going forward, the researchers are looking to expand this into other teams for other conditions, for example patients receiving CAR-T treatment.

British Society of Haematology (BSH) 2020. Oral presentation OR-012.

COI: Dr Soosaipillai did not declare any conflicts of interest.

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