Why are people with blood cancers more likely to die in hospital?
Dr Debra Howell, Senior Research Fellow at the University of York, has led a research project funded by Marie Curie looking at end of life care for people with blood cancers.
Blood cancers, which are often referred to as haematological malignancies, account for around one in 10 of all newly diagnosed cancers in the UK. They affect people of all ages and are a complex group of diseases.
Although blood cancers are usually categorised into three main groups – leukaemia, myeloma and lymphoma – there are many sub-types with varying symptoms, patterns of disease progression, treatment needs and outcomes.
Compared to people with other cancers, those with blood cancer tend to be less likely to have access to specialist palliative care services and more likely to die in hospital.
Choice and care at the end of life
Senior Research Fellow Dr Debra Howell has been researching blood cancers for more than 15 years.
Debra says: “We received funding from the Marie Curie Research Grants Scheme to understand what happens at the end of life for patients with blood cancers.
“We wanted to know whether these patients were disadvantaged or had different care needs compared to people with other types of cancers, and to see if changes could be made to improve their care.”
The research process
Debra and her team are part of the Haematological Malignancy Research Network, one of the world’s leading registries dedicated to collecting detailed information on people newly diagnosed with blood cancers in Yorkshire and Humberside. The registry provides clinicians and researchers like Debra with a wide range of vital information on patients with blood cancers, including the care, services and support they access from the point of diagnosis until their death.
Debra says: “In our research, we examined the medical records of almost 900 people who had died from blood cancer. We looked at whether they had discussed their end of life preferences, what their wishes were, and whether these wishes were met.
“We also asked a large group of haematology and specialist palliative care consultants and nurses, as well as GPs, to tell us about their experiences of providing end of life care to patients with blood cancers. Finally, we interviewed relatives of patients with blood cancer who had died to find out about their experiences and what they thought could have been improved.”
When hospital care is the right choice
When the data were analysed, the study team found that most people with blood cancer died in hospital, followed by at home, in a care home and in a hospice.
Of patients who had discussed their preferences before they died (around half the total), being able to die at home was the most common choice, followed by wanting to stay in hospital. Overall, about two-thirds of patients who had stated a preference died in the place they chose.
By studying the data, and through her interviews with healthcare professionals and patients’ relatives, Debra identified several key factors that meant people with blood cancers were more likely to die in hospital.
Some of these factors were linked to the complex and unpredictable way some blood cancers behave, which mean that patients can become severely ill very quickly. This makes advance planning, and setting up care at home, more challenging.
Another factor was the strong bonds patients and their families developed with the haematology team – which may be why they preferred to be looked after in hospital at the end of their life.
Making sure teams work together
The study team also examined palliative care referral practices for people with blood cancer. They found that, as most of the care for people with these diseases is provided by their haematology team in hospital, palliative care specialists, GPs and community nurses sometimes feel ‘out of the loop’ when it comes to sharing information about patients who may die soon. This makes it harder to provide the appropriate support for patients who wish to die at home.
Debra says: “As it’s more difficult to know when a patient with blood cancer is reaching the terminal phase of their illness, having earlier discussions around end of life care, and the options available, is important. This means involving the palliative care team at the earliest stage of a patient’s illness.
“Better communication with the primary care teams could enable more patients to be looked after at home if that’s their wish, especially when they are discharged home to die at short notice.”
Dr Debra Howell is publishing her research findings in peer reviewed journals throughout 2017. Read more about research on palliative and end of life care funded by Marie Curie.