End of life care: the unanswered questions

Before I die wall

The Palliative and end of life care Priority Setting Partnership was launched in 2013 to ask patients, carers and clinicians what the most important unanswered questions are in end of life care, so that we can see where more research is needed. In January 2015 the results were published.

The priorities are:

1. What are the best ways of providing palliative care outside of working hours to avoid crises and help patients to stay in their place of choice? This includes symptom management, counselling and advice, GP visits and 24-hour support, for patients, carers and families.

2. How can access to palliative care services be improved for everyone regardless of where they are in the UK?

3. What are the benefits of Advance Care Planning and other approaches to listening to and incorporating patients’ preferences? Who should implement this and when?

4. What information and training do carers and families need to provide the best care for their loved one who is dying, including training for giving medicines at home?

5. How can it be ensured that staff, including healthcare assistants, are adequately trained to deliver palliative care, no matter where the care is being delivered? Does increasing the number of staff increase the quality of care provided in all settings? To what extent does funding affect these issues?

6. What are the best ways to determine a person’s palliative care needs, then initiate and deliver this care for patients with non-cancer diseases (such as chronic obstructive pulmonary disease (COPD), heart failure, motor neurone disease (MND), AIDS, multiple sclerosis, Crohn’s disease, Parkinson’s disease, dementia, and stroke)?

7. What are the core palliative care services that should be provided no matter what the patients’ diagnoses are?

8. What are the benefits, and best ways, of providing care in the patient’s home and how can home care be maintained as long as possible? Does good coordination of services affect this?

9. What are the best ways to make sure there is continuity for patients at the end of life, in terms of the staff that they have contact with, and does this improve quality of palliative care? Would having a designated case coordinator improve this process?

10. What are the best ways to assess and treat pain and discomfort in people at the end of life with communication and/or cognitive difficulties, perhaps due to motor neurone disease (MND), dementia, Parkinson’s disease, brain tumour (including glioblastoma) or head and neck cancer, for example?

Holding hands in hospital - Palliative careOur fight for better palliative care

People with cardiovascular disease (CVD) are not receiving the quality of care they deserve at the end of life and are not dying in the place of their choice.The BHF has invested over £2 million in trialling models of care for improving end of life for people with CVD. 

In response to the Marie Cure report on end of life care, Mike Hobday, our Director of Policy, said: “This report reinforces the evidence that heart failure patients are missing out on quality palliative care.

“We want to see governments and healthcare bodies act now to provide specialist training for healthcare professionals in identifying patients with heart failure approaching the end of life and starting conversations with heart patients about their end-of-life-care.”

The BHF runs a pilot scheme in Glasgow with Marie Curie and NHS Greater Glasgow and Clyde to provide better end of life care for patients with heart failure.

The ‘Caring Together’ programme, which was praised in Marie Curie’s report, has shown that by assessing patients against certain criteria, heart failure specialist nurses can identify a significant proportion of those nearing end of life. This means conversations take place about where and how they would like to be cared for, so their wishes are more likely to be met.

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