New report highlights gaps between CCG policies and patient care experience on advance care planning

New research published today by Compassion in Dying  has revealed significant gaps between Clinical Commissioning Groups’ (CCGs) policies on advance care planning and the reality experienced by patients.

This could result in GPs being unable to adequately support their patients to plan for their future care and treatment, meaning that people may be less likely to have their wishes known about and followed by health and care professionals.

Compassion in Dying was prompted to conduct a Freedom of Information request to all 207 CCGs in England about their policies on advance care planning after receiving frequent enquiries to its information line regarding people’s experiences with GPs.

Callers reported doctors being hesitant, not confident or even unwilling to discuss or record their advance care plans, which can include an Advance Decision (to Refuse Treatment – often known as a ‘Living Will’), a Do Not Attempt Cardiopulmonary Resuscitation (DNAR) form, and/or a Lasting Power of Attorney (LPA) for Health and Welfare.

The report highlights that, contrary to the official policies of many CCGs, in practice there is often a lack of quality information and training for GPs on advance care planning, failures to fully implement the Mental Capacity Act and no formal systems for recording advance care planning documentation on patients’ records.

Examples of enquiries to Compassion in Dying’s Information Line include:

“The GP thought that my Advance Decision meant I did not want any further treatment as of now!  I explained that it was a refusal of treatment for when I lost capacity to make decisions myself. The administrative department refused to record my Advance Decision on my medical notes and destroyed the copy I had given them.” (Henry, 2018)

“When I went to discuss my Advance Decision with my GP, she was utterly bemused by the whole thing. ‘What is this? Why are you bringing it to me? Where did you get it from?’ After she’d read the whole thing, she said ‘so it’s about not being resuscitated?’ I had to explain everything to her.” (Kathy, 2018)

“My GP isn’t supportive of my Advance Decision and said I have to pay £50 for an appointment to discuss it.” (Mark, 2018)

Compassion in Dying is now appealing to CCGs to implement the report’s recommendations to help ensure that GPs can fully support their patients to plan for their future care and ensure their wishes are recorded and respected.

This includes ensuring that the Mental Capacity Act is the foundation for all advance care planning policies, providing high quality information and training to GPs, noting the existence of care planning documentation in patients’ summary care records, and working with experts in the voluntary sector.

Natalie Koussa, Director of Partnerships and Services at Compassion in Dying said:

“Evidence shows that supporting people to make a clear, timely advance care plan not only provides reassurance and peace of mind to individuals and their families[1], but also reduces unwanted or unwarranted hospital admissions[2] – an indicator of success for CCGs across England[3].“However, our report reveals that although some CCGs may appear to have robust policies on advance care planning, enquiries to our Information Line suggest that they are not always being practiced in reality.

“It is therefore not surprising that the 2018 GP Patient Survey found that just 24% of people with a long term condition had agreed a care plan with their doctor… We propose a number of recommendations to strengthen existing policies and ensure they are better adhered to in future, so that patients can receive more and better support from their doctors to plan ahead.

“Our experience shows that while patients feel ready and able to talk about death and dying, often healthcare professionals do not. We recognise that GP practices are under immense pressure, so we want to offer our support and expertise through specialist information, accredited training and community outreach work.

“If national commitments to person-centred care and shared decision-making are to be achieved, GPs must be supported to play their part in ensuring their patients’ wishes for treatment and care can be properly discussed, recorded and followed.”

Commenting on the report, Dr Sarah Russell, Head of Research at Hospice UK, said

“Hospice UK welcomes this new research on advance care planning with its focus on person-centred care and its exposure of gaps in the application of the Mental Capacity Act that can impact on the quality of care provided.

“Enabling consistent discussion and documenting of decisions about advance care planning is key to the provision of high quality end of life care, helping ensure patients’ wishes are listened to and acted upon, so they receive the right support for their needs.”

The full report, Advance care planning in general practice – does policy match reality? Findings from a Freedom of Information request to Clinical Commissioning Groups in England, is available to download here.

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