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Fri, 26 February 2021

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Patients aren’t the ones reluctant to talk about death and dying, says end of life charity

Patients aren’t the ones reluctant to talk about death and dying, says end of life charity

Natalie Koussa, Director of Community Outreach and Partnerships | Compassion in Dying

4 min read Partner content

There is huge potential for GPs to become champions of advance care planning and help make that happen – they just need the right support, says Compassion in Dying.


The benefits of advance care planning – the process of talking about, recording and sharing a patient’s wishes for their future healthcare and treatment – are now widely recognised and championed across the health and care sector.

Evidence shows that supporting people to plan ahead in a timely fashion results in better person-centred care at the end-of-life – a commitment for the NHS; and reduces unwanted and unwarranted hospital admissions – a target for Clinical Commissioning Groups (CCGs) across England. With an ageing population, and increasing numbers of people living with multiple long-term conditions, this is more important than ever.

There is also the invaluable reassurance and peace of mind that individuals and their families gain from discussing and recording their wishes well in advance of a health crisis, either in an Advance Decision (a legally-binding refusal of life-prolonging treatment in certain circumstances), an Advance Statement (which details a person’s values and priorities for their future care) and/or a Lasting Power of Attorney for Health and Welfare (appointing a trusted person to make healthcare decisions on their behalf).

All health and care professionals have their role to play in promoting this, but GPs in particular are in a prime position to support their patients to plan for their future treatment and care. The longer-term relationships GPs tend to have with patients and the more relaxed community setting can make people feel more comfortable discussing their priorities and concerns for the future than in an acute hospital environment.

However, a new a new report published today reveals a worrying mismatch between the advance care planning policies of CCGs (which are responsible for GP practices) and the suboptimal reality experienced by patients.

Contrary to official policies held by CCGs, callers to Compassion in Dying’s free information line have reported GPs being unwilling to discuss their Advance Decisions, giving inaccurate information on the law, stating that advance care planning is only appropriate for patients with cancer and asking patients to pay a fee to discuss their treatment wishes, among other issues.

Experience from our information line and community outreach work shows that patients are only too ready to talk about death and dying – but often, their doctors are not. It appears that many GPs are not equipped with the right information and support to help their patients who want to plan their future care. ‘Shared decision-making’ and ‘person-centred care’ mean nothing if they remain buzzwords in NHS commitments and CCG policy but are not realised on the ground.

Compassion in Dying wants to help bridge this gap between policy and practice – for patients and GPs alike. We appreciate that GP practices are already under immense pressure, so we propose a range of recommendations to strengthen existing policies and ensure they are better adhered to in future. The Mental Capacity Act 2005 should be the foundation for all advance care planning policies; GPs should be provided with high quality information and training; the existence of advance care planning documentation should be noted in patients’ summary care records; and CCGs should work more closely with experts in the voluntary sector.

Compassion in Dying is offering support and expertise through specialist information resources, accredited training and community engagement projects and we appeal to CCGs to reach out to us.

At national level, we are calling for leadership to tackle the significant unexplained and unacceptable variation in advance care planning policies and practice among and within CCGs. Making personalised end-of-life care a priority, through driving achievement of the national Ambitions for Palliative and End of Life Care, will result in increased access to advance care planning, helping healthcare professionals to know and be able to act upon their patients’ treatment and care wishes.

Just 4% of people have made an Advance Decision and/or a Lasting Power of Attorney for Health and Welfare, despite the majority having strong feelings about their future medical treatment. If national and CCG-level commitments to person-centred care at the end of life are to be achieved, this number must increase. There is huge potential for GPs to become champions of advance care planning and help make that happen – they just need the right support.

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

Read the most recent article written by Natalie Koussa, Director of Community Outreach and Partnerships - A culture change is needed in the way we approach death and dying - Compassion in Dying

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