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Patients at end of life see few specialists

System not ‘fit for purpose’ say experts

Jo Carlowe

Tuesday, 19 September 2017

People with dementia receive little specialist support at the end of life.

New research,* published today, from the Marie Curie Palliative Care Research Department at University College London, found that GPs were the main providers of medical care, with 96% of people with advanced dementia  seeing a GP in their last month of life.

While those with advanced dementia often suffered chronic pain and psychiatric symptoms that persisted over many months, they had little contact with specialist services such as palliative care, geriatrics or mental health. 

Only 1% of people with advanced dementia were seen during the follow up period of the study by a geriatrician or an older persons’ psychiatrist.

Paramedics also played a major role in assessment and healthcare towards the end of life, suggesting a reactive rather than planned response to patients’ needs – nearly one in five (19%) were seen by a paramedic in the month prior to their death.

Based on the findings, the researchers say that healthcare services are not currently tailored to the complex needs and symptoms of people with advanced dementia. Given that dementia is now the leading cause of death, they say there is urgent need to ensure an adequate standard of comfort and quality of life for patients.

Care homes, where the majority of people with dementia will die, were found to be poorly served by secondary healthcare services and GPs visiting homes were not supported by specialist services. This reflects the findings of previous studies showing that nursing home residents receive less planned and more emergency healthcare than those living in their own homes.

Palliative care teams may have assisted with symptom management but less than a third of participants (28%) were seen by a palliative care team (34% were referred) and when they were, this was predominantly in the month prior to their death.

When advance care planning did take place, this focussed on resuscitation decisions and place of death, rather than the type and quality of care that the person would like to receive at end of life.

Commenting, Dr Liz Sampson, reader, Marie Curie Palliative Care Research Department, University College London said: “There are challenges that we face in terms of providing high-quality end-of-life care to people with dementia, including an uncertain prognosis, the difficulty in knowing when people are entering the terminal phase of their condition and when specialist services should be involved. However, this uncertainty needs to be taken into account in the planning, commissioning and delivery of services.

“Complex symptoms require active specialist intervention, multidisciplinary working and effective care coordination but many GPs are not supported by these services and feel that they do not have the time or knowledge to do this themselves.

“The system isn’t currently fit for purpose. We need to see more resources provided in the community and nursing home staff receiving more support from external healthcare services.

Responding to the findings, Professor Helen Stokes-Lampard, chair of the Royal College of GPs, said: “Delivering care to patients at the end of their lives is an incredibly challenging, but often rewarding part of being a GP – and we are certainly striving to do this to the best of our ability, whilst also facing intense workload and workforce pressures in general practice.

“We will always do what we can in the best interests of the patient in front of us, but patients at or nearing the end of their lives, particularly those with advanced dementia, have very complex health and social care needs. GPs are generalists – by definition we are not specialists in geriatric medicine, or psychiatry - so when our patients need input from specialist services, it is essential that they have access to them and that we have the technology to enable effective communication.

“We need to be supported at both a national and local level by commissioners, so that we have adequate support to deliver the care that our patients at or nearing the end of their lives – whatever their unique circumstances – need and deserve, at a time when they are incredibly vulnerable.”


* Sampson EL, Candy B, Davis S, et al. Living and dying with advanced dementia: a prospective cohort study of symptoms, service use and care at the end of life. Palliative Medicine, article first published online: September 18, 2017. DOI: 10.1177/0269216317726443

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