The Mental Capacity Act 2005 enables people in England and Wales to plan for their treatment and care in the event they become unable to make those decisions for themselves. The Act provides three valuable tools for advance care planning: Advance Decisions to Refuse Treatment, (often known as ‘Advance Decisions’ and sometimes referred to as ‘Living Wills’), Lasting Powers of Attorney for Health and Welfare, and Advance Statements.
An additional mechanism available for planning end-of-life care is a Do Not Attempt Resuscitation (DNAR) order. This is a document issued and signed by a doctor which lets other healthcare professionals know that resuscitation should not be attempted.
While it is not mandatory to do so, Compassion in Dying encourages people to discuss their advance care plans with their GPs and other health and care providers. At the very least, we encourage people to ensure copies of their advance care planning documents are included in their medical records.
However, people we support often tell us that their GPs have been hesitant, not confident, or even unwilling to discuss or record Advance Decisions or requests for DNAR orders.
This can result in distress, rather than the peace of mind that care planning can offer. It also means that people are less likely to receive treatment and care in line with their values and preferences, as their advance care planning documents cannot be accessed by health and care professionals when needed.
“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*
*All quotes are drawn from callers to Compassion in Dying’s free Information Line. Some names have been changed to protect the privacy of the individuals.
We decided to find out more about the policies which guide how GP practices approach advance care planning via a Freedom of Information request to Clinical Commissioning Groups (CCGs) in February 2018.
The results of the request, analysed alongside data gathered from callers to our free Information Line, revealed significant gaps between national level policies, the efforts of the CCGs in relation to advance care planning, and the practice that takes place within GP surgeries.
All 207 CCGs responded
To ensure that the rhetoric around person-centred end-of-life care becomes reality, we recommend that CCGs:
These recommendations are outlined in more detail below. Compassion in Dying is committed to being an accessible source of expert support on person-centred advance care planning and welcomes all opportunities to collaborate with CCGs, GPs and other healthcare professionals to make this happen.
In February 2018, using the Freedom of Information Act 2000, we contacted the 207 CCGs in England, which are the clinically-led statutory bodies responsible for planning and commissioning healthcare services for their local area.1
We asked:
We received responses from all 207 CCGs. However, 21 CCGs responded to say they did not hold the requested information and five CCGs explained that they were in the process of developing strategies on end-of-life care.
The Ambitions for Palliative and End of Life Care Framework2 establishes the importance of offering everyone the chance to create a personalised care plan including the possibility of recording preferences that might guide others if the person were to lose capacity to make their own decisions.
This framework also requires that all those who provide palliative and end-of-life care should be aware of the legislation that seeks to ensure their services adopt an individualised approach. To support this work, and following the government’s response to the House of Lords Select Committee Report on the Mental Capacity Act3, the National Mental Capacity Forum, (a joint Ministry of Justice and Department of Health and Social Care initiative), was set up with the mandate of improving the implementation of the Act and the uptake of Advance Decisions.
In line with these commitments, the results of our Freedom of Information request indicated that 87% of CCGs (180 out of 207) provide information to GP practices on advance care planning.
However, not all CCGs consistently and explicitly covered the topics of Advance Decisions, Lasting Powers of Attorney and Do Not Attempt Resuscitation orders. While some provided links to reliable sources such as the NHS website and Compassion in Dying tools, many referred to web addresses that did not work. We also observed that templates for Advance Decisions made available did not have accompanying guidance notes, resulting in inadequate support, not only for individuals but also for healthcare professionals.
The following experiences are examples of the negative consequences people face when advance care planning policies are not adequately developed and implemented:
In all four examples the GPs lacked understanding of the law on Advance Decisions and/or understanding of their purpose.
The General Practice Forward View4 recognises that some patients wish to have the knowledge, skills and confidence to take greater responsibility for their health and to feel more in control of their health outcomes. This is reiterated in the High Level Guidance issued to support a shared view of quality in general practice5 which explained the importance of kind and compassionate care that supports patients to have control, understand their choices and make the right decisions for them to optimise their health and wellbeing.
Recent court rulings6 have highlighted the value of advance care planning when faced with an unexpected loss of decision-making capacity. The courts clarified that, even in cases involving a person in a prolonged disorder of consciousness, having a legally binding Advance Decision would mean that the person’s wishes will be followed and their loved ones will be spared difficult court processes if tragedy does strike.
84% of CCGs (173 out of 207) reported using a variety of methods such as internal databases, web resources and collaborations with palliative care teams to disseminate information on advance care planning to local GP practices. Examples of the information tools used are below:
Our analysis is that in some cases the quality of the information offered is unsatisfactory. This concern is supported by the experiences of some callers to our free Information Line:
There appears to be a fairly common misconception among GPs that Advance Decisions are only for people who are already seriously ill, which goes against the empowering principles of the law.
Being dismissive of Advance Decisions is the antithesis of person-centred care and ignores the fact that many people are motivated to make plans for their care and treatment as a result of witnessing the suffering of a loved one.
The Mental Capacity Act 2005 enables individuals to complete a legally binding Advance Decision for free. This provides a valuable mechanism for everybody to take control of their treatment and care, without a financial barrier. The cooperation of the healthcare system is vital to maintaining this.
Providing care regardless of a person’s socio-economic circumstances is at the heart of national health policies. The Ambitions for Palliative and End of Life Care Framework7 and the Care Quality Commission’s A Different Ending report8 stress the importance of tackling inequalities in accessing care at the end of life.
In response to our question about whether or not advance care planning was a free service, 106 CCGs responded that supporting individuals to plan their care was not considered private work and therefore should not be charged for. The responses of the remaining 101 CCGs were unclear. We believe that this lack of clarity leads to situations such as the one faced by Mark who called our free Information Line:
When we contacted the CCG in his area to ask what they would do if someone wanted to discuss their Advance Decision with their GP, and have it recorded on their medical records, they responded:
This service should be provided by the GP practice under their core General Medical Services contract. If the CCG were notified that a GP practice had charged, the CCG’s Primary Care team would investigate, and if appropriate a contract breach notice may be served on the Practice.
In contrast to Advance Decisions, which have legal requirements around validity and applicability but no set format, there are specific DNAR orders which are used in each geographical area, and which are generally available from the Ambulance Trust or the CCG.
When reviewing the data gathered from the Freedom of Information request alongside our Information Line records, there appears to be a mismatch between the policies around resuscitation and the implementation of related processes.
85% of CCGs (177 out of 207) provide GP practices with information on Do Not Attempt Resuscitation orders, and yet Compassion in Dying frequently receives calls from health and care professionals asking how to obtain and implement DNAR orders
Our findings suggest that some healthcare professionals and support staff do not have clear information about contacting their CCG or local Ambulance Trust for support and the required documentation for DNAR orders in their area, leading them to call charities such as Compassion in Dying instead.
There are well-defined policies that support people to plan and record their care preferences. The Mental Capacity Act Code of Practice, paragraph 9.14, notes that healthcare professionals should detail any discussion about someone’s Advance Decision on their medical records. The End-of-Life Care Patient Charter of the Royal College of Nursing and Royal College of General Practitioners also makes a commitment to helping people to think about and record their choices for the future.9
NHS Digital has stressed the benefits of Summary Care Records for people wishing to plan their care and treatment. More recently, the Care Quality Commission has said that effective information sharing across care settings enables professionals to make informed decisions about people’s needs and care requirements.10
46% of the CCGs (96 out of 207) reported that GP practices in their area have systems for recording the existence of a person’s Advance Decision and 32 of those responses mentioned the use of Electronic Palliative Care Co-ordination Systems (EPaCCS). These findings are reinforced by the experiences of some of our callers which suggest a lack of clarity on how best to record advance care plans so that individuals’ specific treatment and care preferences are known about and can be followed.
The General Medical Council guidance, Treatment and care towards the end of life,12 the Ambitions for Palliative and End of Life Care Framework13 and the High Level Guidance issued to support a shared view of quality in general practice14 highlight the importance of ensuring that all staff are prepared to care with confidence, competence and compassion. In line with the commitment to evidence-based service provision, the value of collecting and using robust data to measure and improve performance was also clearly established within these key documents.
28% of the CCGs (57 out of 207) did not respond to the question on whether they commission training for GPs on advance care planning and the Mental Capacity Act. The 150 CCGs that responded to the question reported using a range of training and awareness raising methods as set out below.
132 of the 207 CCGs responded to the question on how they monitor GP practices’ adherence to advance care planning policies and answers included the review of palliative care registers and Electronic Palliative Care Co-ordination System reports; Care Quality Commission inspections; and quality assessment visits and meetings.
Despite these efforts, we believe that the quality of care offered to individuals with regards to advance care planning could be improved, as demonstrated by Elizabeth’s encounter with her GP:
In addition to Advance Decisions which can be completed for free, the Mental Capacity Act 2005 (sections 9 – 14) also provides for Lasting Power of Attorney for Health and Welfare.
If commitments to person-centred care and shared decision-making are to be realised, the mismatch between end-of-life care policies and practices needs to be urgently addressed. We believe that GPs, in collaboration with Clinical Commissioning Groups, are well-placed to achieve this.
Evidence suggests that a key contributor to reducing unwanted and unwarranted hospital admissions is a clearly documented advance care plan15 and one of the indicators of the CCG Improvement and Assessment Framework 2017/18 is the percentage of deaths with three or more emergency admissions in the last three months of life.16 Therefore, the need to prioritise practical and person-centred advance care planning strategies is well established.
Nevertheless, we recognise that GP practices are under tremendous time and resource pressures and that many healthcare professionals feel unprepared for discussions about death and dying. It is with all of this in mind that we make the following recommendations:
The Mental Capacity Act 2005 gives individual choice and person-centred care statutory weight. Despite being in force for over 10 years, people have not always benefitted from its provisions on advance care planning. In 2014, the House of Lords Inquiry17 into the implementation of the Act found that:
The Act has suffered from a lack of awareness and understanding. The empowering ethos has not been delivered.
House of Lords Inquiry, 2014
CCGs and GPs have a role to play in changing this.
While much of the literature focuses on GPs initiating conversations about end-of-life care, our service users’ experiences show that often people are ready to talk about death and dying while healthcare professionals are not.
We would like to see the Mental Capacity Act being used as the foundation for systems that enable people to discuss, document and share their plans without unnecessary hurdles such as GP misunderstanding or disapproval, solicitor involvement and costly appointments.
In order to achieve the National Commitment for End-of-Life Care, which includes supporting people to have honest conversations about care preferences18, we specifically recommend that CCGs make it clear to GP practices that discussing, reviewing, signing and keeping a copy of Advance Decisions are core services which they should not be charging patients for.
There is an abundance of resources available on person-centred end-of-life care.19 However, the quality and comprehensiveness of resources are inconsistent. We suggest that CCGs work with specialists dedicated to using the Mental Capacity Act for protecting individual choice at the end of life, to endorse key resources that would be valuable to time-pressured GPs.
At a minimum, resources on advance care planning must include:
Additionally, the priority placed on supporting healthcare professionals to build their confidence in this area does not seem to be universal. Offering a range of learning opportunities such as low-dose high-frequency training; meetings with palliative care teams and specialist charities; e-learning modules; and Protected Learning Time events using quality-assured resources would ensure that the educational initiatives meet the diverse preferences of healthcare professionals. These opportunities need to be offered not only to practising GPs, but to medical students too so that person-centred care becomes embedded in general practice.
The 2018 GP Patient Survey20 revealed that of patients who say they had a long-term condition, only 24% had agreed a care plan with a healthcare professional. There is room for improvement, particularly in terms of documenting care preferences. However, it is not only the collection of information that is required, but the use of the data to reflect on what is and is not working in terms of supporting people to plan their future care and treatment.
We recommend that GP practices and CCGs make greater use of available electronic systems. This would improve care at both an individual and community level by ensuring individuals’ advance care plans are known about and can be accessed and followed by healthcare professionals, and at the local level to generate summaries and show trends in advance care planning so that areas for improvement can be easily identified.
Voluntary sector organisations can play an important role in supporting the work of general practice21 by enabling GPs to access practical, community-based support for their patients, thereby freeing up time and ensuring patients get the expertise needed. Healthcare professionals who have engaged with our community outreach activities recognised that the ability to refer patients to a trusted community service that could help them with advance care planning helped limit the demands on their time and ensured patients received high quality support.22
I do a lot more signposting…I feel that I can talk confidently about it… I think that services supporting people to complete planning tools need to be rolled out more.
GP, 2016
Compassion in Dying welcomes collaboration with any CCG wishing to increase the capabilities of GP practices by investing in Continuing Professional Development accredited training on the Mental Capacity Act 2005; referral systems to experts in advance care planning; and practical strategies for reaching diverse populations with support on end-of-life care.
Is person-centred end-of-life care possible? We believe it is. There is national-level commitment, there is supportive evidence, and there are tools.
However, our findings from the Freedom of Information request demonstrate a significant diversity of advance care planning policies among and within CCGs. For example, while 87% of the CCGs provide information to GP practices on advance care planning and 72% offer training and support to GPs on this topic, only 46% reported that GP practices in their area have a system for recording the existence of a person’s advance care plan and only half of the responding CCGs confirmed that supporting individuals to plan their care was considered a free service.
As such, while there are examples of excellent practice there are also many instances where CCGs are not providing GPs with the policy guidance and tools they need to support people with advance care planning. The experiences callers to our Information Line have reported, shared throughout this report, demonstrate the real world impact of policy and practice for individuals who want to plan for their future care and treatment.
Therefore we now need CCGs to take action by fully implementing the Mental Capacity Act; investing in building professionals’ skills; using data to improve care; and collaborating with the voluntary sector.
To this end, Compassion in Dying is committed to being an accessible source of expert support on person-centred advance care planning for both individuals and healthcare professionals. We do this because we know that advance care planning gives people peace of mind, allows them to live well now and reassures professionals that the care they provide is what the person wants.
I’ve completed my Advance Decision and discussed it with my GP, who put it on my records. I can now relax!
Beth, 2018
1 In February 2018 there were 207 Clinical Commissioning Groups. As at April 2018, there are 195 CCGs. (Office for National Statistics)
2 Ambitions for Palliative and End of Life Care: A national framework for local action 2015 – 2020, National Palliative and End of Life Care Partnership, 2015
3 Valuing every voice, respecting every right: Making the case for the Mental Capacity Act, HM Government, June 2014, https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/318730/cm8884-valuing-every-voice.pdf
4 General Practice Forward View, NHS England, 2016, https://www.england.nhs.uk/publication/general-practice-forward-view-gpfv/
5 High level guidance to support a shared view of quality in general practice, Regulation of General Practice Programme Board, 2018, https://www.cqc.org.uk/sites/default/files/20180322_high-level-guidance-to-support-shared-view-of-quality-in-general-practice.pdf
6 Briggs v Briggs [2016] EWCOP 53, concerned a 43 year old police officer who was knocked off his motorbike in 2015, which resulted in a significant brain injury. As he had never recorded his wish to not be kept alive in a minimally conscious state, in a legally binding way, his family was forced to fight in the courts in order to have Paul’s wishes respected and life-prolonging treatment withdrawn.
http://www.bailii.org/ew/cases/EWCOP/2016/53.html
An NHS Trust and others v Y [2018] UKSC 46 involved a man in a vegetative state following severe brain injury caused by a cardiac arrest. As a result of the judgment in this case, families and hospitals will in some cases be able to make decisions about the person’s treatment without going to the courts for approval, even where they do not have an Advance Decision. However, having an Advance Decision in these cases would make the process much clearer by providing a legally binding record of the individual’s wishes.
http://www.bailii.org/uk/cases/UKSC/2018/46.html
7 See note 2 above
8 A Different Ending: Addressing Inequalities In End of Life Care, Care Quality Commission, 2016, https://www.cqc.org.uk/sites/default/files/20160505%20CQC_EOLC_OVERVIEW_FINAL_3.pdf
9 The End-of-Life Care Patient Charter of the Royal College of Nursing and Royal College of General Practitioners, RCN and RCGP 2011, https://www.goldstandardsframework.org.uk/cd-content/uploads/files/Library%2C%20Tools%20%26%20resources/RCGP%20EOLC%20Charter.pdf
10 Summary Care Records, NHS Digital, https://digital.nhs.uk/services/summary-care-records-scr/additional-informationin-scr accessed August 2018
11 Beyond barriers: How older people move between health and social care in England, Care Quality Commission, July 2018, https://www.cqc.org.uk/publications/themed-work/beyond-barriers-how-older-people-move-between-health-care-england
12 Treatment and care towards the end of life: good practice and decision making. General Medical Council, 2010, paragraphs 88 and 89, https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/treatment-and-care-towards-the-end-of-life/working-with-the-principles-and-decision-making-models—cont—2#paragraph-88
13 See note 2 above
14 See note 5 above
15 The impact of advance care planning on place of death, a hospice retrospective cohort study, Abel J et al, BMJ Supportive and Palliative Care 2013;3:168-173, https://spcare.bmj.com/content/3/2/168
16 CCG improvement and assessment framework 2017/18, NHS England, 2017
17 Mental Capacity Act 2005: post-legislative scrutiny, Select Committee on the Mental Capacity Act, House of Lords, 2014, https://publications.parliament.uk/pa/ld201314/ldselect/ldmentalcap/139/13902.htm
18 Our Commitment to you for end of life care: the Government Response to the Review of Choice in End of Life Care, Department of Health, 2016, https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/536326/choice-response.pdf
19 See for example The Palliative and End of Life Care Toolkit, Royal College of General Practitioners, https://elearning.rcgp.org.uk/mod/book/view.php?id=12529 accessed August 2018 and the Social Care Institute for Excellence (SCIE) Mental Capacity Act directory, https://www.scie.org.uk/mca-directory/advanceplanninganddecisionmaking, accessed August 2018 – both include links to many resources.
20 GP Patient Survey 2018, NHS England, https://www.england.nhs.uk/statistics/2018/08/09/gp-patient-survey-2018/
21 General Practice Forward View, NHS England, 2016 and What is the role of VCSE organisations in care and support planning? National Voices, 2016, https://www.nationalvoices.org.uk/sites/default/files/public/publications/what_is_the_role_of_vcse_organisations_in_care_and_support_planning.pdf
22 My Life, My Decision: Planning for the end of life, A new approach to engaging people and communities, Compassion in Dying, 2016 https://compassionindying.org.uk/library/my-life-my decision-planning-end-life/