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Older people who die of old age or frailty are less likely to receive good care at the end of their lives, according to a new study that shows that community care providers prioritise people with an end-of-life diagnosis.
The study from the University of Cambridge, published in the British Journal of General Practice and funded by Marie Curie, found that the healthcare system was prioritising people with single conditions such as cancer, heart failure or chronic chest disease.
People over the age of 85 currently account for 45% of deaths a year in the UK. The researchers said that decisions about allocating and prioritising care need to shift to focus on people’s needs and less on their prognosis and diagnosis, with the charity adding that “proximity to death should not be the criteria for good care.”
The lack of sufficient care for those who are dying of age-related conditions does not just affect the patient but can also have a long-term negative impact on the loved ones they leave behind.
Many older people are dying without the care and support they need
Louisa Polak, lead author and visiting researcher, Primary Care Unit, University of Cambridge said: “To give frail older people a fair share of care provision, we suggest that healthcare professionals’ decisions need to be based less on diagnosis and more on need. This reallocation requires increased resources overall, as not to reduce existing palliative care patients’ quality of care, but ultimately will ensure older people are receiving the care they deserve toward the end of their lives.”
The Cambridge study centred around interviews with people who provide community care in one Clinical Commissioning Group in England, including nurses for out-of-hours services and clinicians in community hospitals and nursing homes. The participants all described how an end of life label or diagnosis helps to unlock doors to services. Additionally, in the open-door setting of out-of-hours community nursing, teams described giving priority to calls from end of life patients.
They said that making an end of life diagnosis is difficult in frail older people who have no single life-limiting condition, partly because it was not always thought about in time. Several suggested that the lack of diagnosis was a barrier to good community care, contrasting this with the care available to people with cancer.
The end of life care system is unknowingly discriminatory
Julie Pearce, Chief Nurse and Executive Director of Caring Services at Marie Curie, said: “These findings do not paint a great picture for people who are dying of old age or frailty. It is undeniable that many older people are dying without the care and support they need. The research uncovers the lack of attention on what matters to the individual as they are reaching the last phase of life.
“It suggests that the system is unknowingly discriminatory in not enabling access to good end of life services. Older peoples’ experience matters as much as anyone else’s life and death. We all must learn how to have the compassionate conversations with people to ensure their needs, based on what matters to them, are met.
“Everyone deserves to get the care and support they need at the end of their life, regardless of their age or diagnosis. Proximity to death should not be the criteria for good care.”