Written evidence submitted by Compassion in Dying (ELC0021)

1. Compassion in Dying is a national charity that supports people at the end of life to have what they consider to be a good death by providing information and support around their rights and choices. We are the leading provider of free Advance Decisions in the UK, run an End of Life Rights Information service and conduct and review research into rights and choices in end-of-life care. On average 240 people contact us per month and 685 Advance Decisions are downloaded on top of physical copies we send out every month. For this consultation we will draw on our work which focusses on rights and choices on medical treatment decision rights and choices under the Mental Capacity Act 2005 (MCA).

2. We believe that patient autonomy and choice must be respected in end-of-life care just as much as it is in all other aspects of healthcare. While many of the legal rights that give autonomy and choice are well-established, in practice they are relatively unknown by healthcare professionals and patients alike. In addition, the enforcement of these legal rights is subject to significant problems due to the difficulties of recording wishes for advance care planning in a way that is easily accessible for instance in emergency care.

3. YouGov polls, commissioned by Compassion in Dying, have found that 82% of people would want to be in control of life-prolonging medical treatments should they lose mental capacity. Only 7% would rather these decisions be made by a medical professional. However, only 4% of people have an Advance Decision or have appointed a Lasting Power of Attorney for health and welfare to ensure their medical treatment preferences can be respected (which is in contrast to the 28% of the general population in the USA who have formally recorded their preferences – which rises to 65% to those 69 and over[1]). 48% wrongly believed that family members could make medical decisions on their behalf if they lost capacity.[2] Work is needed to ensure that people can act on their preferences in order to have the death they want. More widely, we support that patients are involved in all decisions about their care, not just those on the refusal of life-prolonging treatments.

4. These two contrasting experiences from Compassion in Dying service users illustrate the consequences of this gap between what people want for end of life and what they have done to ensure their wishes are respected:

Ellie’s mother, who had dementia, was taken into hospital following an accident.  The doctor decided to operate, despite Ellie telling medical staff that their mother did not want surgery. “The doctor’s decision left us all feeling very upset and angry.  Before dementia set in Mum had told us many times that she did not want surgery at any cost. It seemed to us at the time that our views were being deliberately ignored and, because we were trying to convey the strongly held wishes of our mother, this was deeply upsetting. We understand now that legally we could not make decisions on behalf of our mother. ”

In contrast, Jenny and her father made their Advance Decisions together. “Five years before my father died aged 91, he and I spent time together filling in our Advance Decisions.  That conversation helped me to understand his wishes.  When he was admitted to hospital the last time I made a point of telling every health professional that he had made an Advance Decision and that he was now so weak and ill that he just wanted palliative care.  Not one person tried to argue with me and my father slipped away less than 24 hours later. Having an Advance Decision gave me the confidence, determination and, ultimately, the authority to ensure my father’s wishes were respected.  I was so grateful for that.”

5. Talking about end-of-life care in the US (which is comparable to the UK) the BBC Reith lecturer, Atul Gawande said “We need to recognise that dying people have other priorities apart from living longer.  It turns out the best way to find out people’s priorities is to ask them….When people did have those conversations they were less likely to choose intervention, less likely to suffer and less likely to die in hospital. And they lived as long or longer than those having desperate medical interventions at the end of life.”

Summary of key concerns

6. Our key concerns with current end-of-life care policy are the lack of coordination at a top-level – which may be reflective of wider changes in the NHS – and the absence of focus and guidance on our legal rights to refuse medical treatment in advance of losing capacity.

7. When patients are not informed about their prognosis and are not asked about their care and medical treatment preferences, they are denied the right to participate in decisions and might not have the death they want. By encouraging earlier engagement with the recording of preferences through Advance Decisions or Lasting Powers of Attorney (LPA) for Health and Welfare (or through advance care planning) when a patient has a terminal or chronic diagnosis, individuals will be able to record their end-of-life care preferences in advance of losing capacity.

8. Historically this has not been well achieved[3] and research shows that there is a lack of a systematic approach to the recording of discussions with patients or carers about end-of-life issues, with care professionals often carrying information about patients ‘in their heads’ rather than relying on recorded notes to support the transfer of information between staff across organisational boundaries.[4],[5] Most clinical deterioration occurs out of hours3, so it is crucial that documented preferences are accessible and that all care professionals have sufficient competency to act on them.

9. There also needs to be more encouragement of the ‘well’ population to record their medical treatment wishes in advance. This was raised as a concern by the House of Lords Select Committee Report on the MCA.

Delivery of end of life care: policy versus practice

10. There will always be a necessary balance between ensuring that local services can deliver care specific to their context and ensuring that best practice is implemented across the country. In the context of end-of-life rights, we believe the latter has been less successful. Ensuring that patient-centred end-of-life tools are used across the board and regulated is important, while avoiding the over-auditing of practice which means care professionals have no time to care for patients.

11. Two key end-of-life documents have been published this year, ‘Actions for End of Life Care: 2014-16’ and ‘Priorities of Care for the Dying Person’. We are pleased that Actions for End of Life Care promises to develop guidance on advance care planning and improve information on care, treatment and support options for patients. There has, however, historically been a lack of engagement with end-of-life rights, not addressed by the End of Life Care Strategy 2008 nor by these more recent documents. None of these strategies cover the means to plan in advance of reaching an end-of-life stage.

12. As the Liverpool Care Pathway crisis made apparent, any medical tool or ‘pathway’ is only as effective as those implementing it. There is a need for effective training in the use of tools at the end of life, to ensure good communication and flexibility, for example with regard to the patient’s condition. The Priorities of Care for the Dying Person guidance needs to be backed-up with mandated training as we cannot assume that all care professionals are familiar or happy with the principles of patient-centred decision-making. A study found that whilst care professionals hold positive views on Advance Decisions in principle, in some cases they were unlikely to be implemented if an Advance Decision conflicted with a care professional’s clinical opinion, potentially in breach of the Mental Capacity Act.[6]

Awareness and competence of care professionals

13. Evidence demonstrates that the training needs of care professionals are not being met. Our Information Line receives hundreds of calls each month. 9% of our Information Line service users report that their GP had not heard of Advance Decisions.  A 2014 RCN survey of their members revealed 58.5% of nurses reported instances where their patients’ wishes had been unable to be fulfilled over the last six months. Furthermore, 49% said that they did not always have the chance to discuss with patients how they would like to be cared for during their end of life period.[7]

14. A community stakeholder manager who received training from Compassion in Dying’s My Life. My Decision project (see paragraph 17) commented:
    
    “Until we had the training we couldn’t gauge what people’s knowledge of it (end-of-life rights) was…I had presumed that staff had more knowledge of the difference between Advance Decisions and an LPA, so I had asked for training around ‘starting a conversation’. It then became evident that we actually needed more on what’s the difference, the legalities and then dispelling the myths, like is an Advance Decision set in stone?”

Recording preferences and withdrawing from treatment

15. Early engagement with Advance Decisions and LPAs is crucial. The Government’s response to the House of Lords Select Committee Report on the Mental Capacity Act 2005 stressed the urgency to:
    
    “…address the low level of awareness among the general public of Advance Decisions to refuse treatment; promote better understanding among health care staff of Advance Decisions, in order to ensure that they are followed when valid and applicable; promote early engagement between health care staff and patients about Advance Decisions to ensure that such decisions can meet the test of being valid and applicable when the need arises; promote the inclusion of advance decisions in electronic medical records to meet the need for better recording, storage and communication of such decisions.”

16. Urgent work is needed to increase well, ill and dying peoples’ knowledge of legal rights and options under the MCA. Awareness of end-of-life preference tools such as Advance Decisions and LPAs amongst care professionals is low, especially outside of palliative care. There is confusion amongst the general public about what their end-of-life rights are. Audit of our End of Life Rights Information Line shows that many people want to engage in these issues and make decisions, however they are not sure how to go about doing it.

17. In response to this need, and with funding from the Big Lottery Silver Dreams fund, Compassion in Dying is working in partnership with seven Age UKs across England on a project called ‘My Life My Decision’. The project will train Age UK volunteers in end-of-life rights so they can raise awareness amongst service users and community stakeholders and support individuals who want to act on their rights. Through the pilot of My Life My Decision in East London, over 2,000 older adults were made aware of their rights. Of these around 100 explored or acted on their choices with group or one-on-one discussions and support. The project engaged with over 600 community stakeholders who deliver care and support to older adults.
    
    “I had been thinking about what to do…so I thought if there was something in writing, then there would be something for doctors to refer to…For someone in my position it’s really good to know I can make my wishes known and hopefully nothing will happen that I don’t want to happen”4  - Service user
    
    “Some people think these conversations should just pop up when people are ready to have them, but if you leave it like that, it never pops up…it’s not something that comes up automatically in conversation”[8] - Community stakeholder

18. The pilot project demonstrated a clear need for end-of-life rights awareness raising and training for the public and community care professionals, as well as 1-2-1 support for individuals who wish to complete an Advance Decision or appoint an LPA for Health and Welfare. Lessons from the pilot have informed the development and implementation of My Life My Decision across England. While the project is relatively new, it will continually evaluate and report on its objectives and outcomes throughout and further evidence can be provided to the Committee on request.

Ministry of Justice calls for wider promotion of Advance Decisions

19. At the launch event for My Life My Decision, the Ministry of Justice made a positive response to calls for the House of Lords Select Committee to raise awareness of the provisions of the Mental Capacity Act.[9] We recommend this work includes:

(i)                  An analysis of the life-events where it might be useful or appropriate to prompt awareness of rights to make an Advanced Decisions or a LPA for health and welfare, together with a cross-Government review of the services a citizen may be in contact with at those times so that relevant training and resources can be made available.

(ii)                An audit of the awareness and support services available in statutory and third sectors to inform an assessment of the current coverage and gaps.

Advance Care Planning guidance

20. South East Coast Clinical Senate’s 2014 guidance on Advance Care Planning (ACPs) echoes many of our concerns and recommendations for practice around Advance Decisions and LPAs. The guidance stresses i) more widespread use of ACPs in residential and nursing homes and for those over 75, as well as those who are chronically or terminally ill ii) the importance of integrating Advance Decisions and LPAs into an ACPs iii) how and where to record a patient’s wishes and how to access completed ACPs iv)  the rapid roll out of Electronic Palliative Care Co-ordination Systems (EPaCCS) by commissioners v) the importance of building ACP discussions into staff responsibilities and objectives and appropriate training for all care staff.

End-of-life carers and bereaved people

21. In order to understand what patients and carers want from care providers at the end of life, a secondary analyses of qualitative interviews with people caring for a dying relative was conducted to examine what co-ordinated, person-centred care at the end of life looks like, with an emphasis on the carer’s perspective. This project was commissioned by Compassion in Dying and has been used to inform the development of the National Voices ‘Narrative’, which has been designed to inform commissioners on how end of life care can be improved.

Evidence and research on patient end-of-life preferences

22. More research into end-of-life preferences is needed. It is essential that this is good quality, primary research which can be used to inform practice development. Areas for research include: whether patient preferences are recorded and respected, what are the barriers in place to stop this happening and how can they be overcome; longitudinal study of the impact of patient preference tools on the person’s quality of end-of-life and death; an ethnographic study of how nurses and doctors are ‘taught’ dying and how this influences their practice.

Whilst the CQC is evidencing variations in the quality of end-of-life care that people receive, there are no plans to audit the recording and respecting of individual’s medical treatment wishes nationally.* A survey of 2,400 adults found that only 18% of dying people had their preferences formally documented.[10] This figure is not surprising given that the VOICES survey (2014) indicated that only 31% of deceased patients across care settings definitely knew they were going to die, which has implications for them engaging with the dying process and making their preferences known. Whilst some patients will not want to make decisions, it is the duty of care professionals to equip them with information to do so. BBC Reith lecturer, Atul Gawande suggested that consultations with patients should focus on exploring where they are with their condition, what are their worries for the future, personal goals and what outcomes would be unacceptable to them?[11] This would show how much the patient knows about their prognosis – which could be addressed - and what their care and treatment wishes might be.

*Although there has been some research and audit conducted into the numbers of patients who have an ACP and the number who die in their preferred place.

23. The evidence base on Advance Decisions needs to be expanded in order to inform practice. National research needs to be conducted into how medical treatment preferences are recorded, stored and the extent to which they are acted on.

24. Currently there is an emphasis is on preferred place of care with less emphasis on the refusal of life-prolonging medical treatments.

Key recommendations

25. We would recommend the following improvements to ensure better end-of-life care and provide more universal access to end-of-life rights:

1. The mismatch between the principles of end-of-life care and the actions that must be taken needs to be addressed. Strategies and guidance often suggest what best practice is, rather than providing strong evidence-based guidance that would allow for consistently good care for people at the end of life.
2. An explicit mention of the right to refuse treatment in advance and to appoint an LPA for health and welfare decisions should be included in the NHS constitution and all End of Life Care strategies and commissioning plans.
3. Information about Advance Decisions and LPAs should be given routinely as part of Advance Care Planning and other end-of-life planning pathways.
4. There should be a positive duty on healthcare professionals to inform patients of their right to make an Advance Decision or a Health and Welfare LPA, if there is reason to believe patients may lose capacity – for example, if they are due to undergo general anaesthetic, have a terminal or degenerative diagnosis, or have a diagnosis of dementia.
5. There should be mandatory training for professionals on legal issues surrounding end-of-life decision-making and starting the conversation about end-of-life care preferences.
6. Most care professionals do not have the time to support service users to complete an Advance Decision or appoint an LPA. It is crucial that they know to signpost to organisations that can provide information and advocacy on end-of-life decision making.
7. There needs to be a register of Advance Decisions similar to the principles of the Organ Donor Register. There also needs to be an electronic record of whether a person has an Advance Decision or LPA for Health and Welfare which can be accessed by care professionals in a timely way and would signpost the professional to the necessary documents.
8. Research into the uptake, recording and use of patient medical treatment preferences is urgently needed in order that the current situation may improve. This would ideally also include CCG indicators for end-of-life care being linked to care plans, i.e. the numbers of people whose medical treatment preferences are met.
9.