Standardised Advance Care Planning

9.1 The Welsh Government supports the need to improve advance care planning. People should be supported to have clear and meaningful conversations about what matters to them. These conversations should help clinicians make decisions with patients and families. 9.2 Advance care planning can include decisions about whether cardiopulmonary resuscitation, often called CPR, should be attempted if a person’s heart or breathing stops. A Do Not Attempt Cardiopulmonary Resuscitation decision, known as DNACPR, is a serious clinical decision. It must be made properly, discussed sensitively, and clearly recorded. 9.3 The Welsh Government is committed to protecting people’s rights, and making sure these decisions are made properly, and avoiding inappropriate use of Do Not Attempt Cardiopulmonary Resuscitation ‘DNACPR’ decisions. 9.4 However, the Welsh Government does not support introducing a single, standardised process across the UK currently. Different approaches are already in place across the four nations, reflecting differences in law, policy, health services and current practice. 9.5 Wales already has established arrangements for advance and future care planning. It is the Welsh Government’s view that introducing a single UK‑wide model could disrupt those arrangements and may create confusion for patients, families and professionals. The Welsh Government’s priority is to strengthen the approach already in place in Wales. 9.6 In Wales, advance care planning is supported through the Advance and Future Care Planning Framework, which is already used across the NHS in Wales. This approach supports person‑centred discussions and the clear recording of preferences. It has been designed to reflect Welsh legal requirements and support decisions made jointly between clinicians, patients and families. 9.7 The challenges during the pandemic were not solely due to the absence of a standardised form. They were also about how conversations were held, how confident staff felt in having those conversations, and how information was recorded, shared and accessed across different care settings. The Welsh Government believes addressing these challenges — particularly through improved training, support and guidance for staff, is essential to improving patient experience and outcomes and is likely to have greater impact than switching to an alternative delivery mechanism.

9.8 The Welsh Government recognises, however, that there are benefits to greater alignment across the UK. We are therefore open to working with the UK Government and devolved governments to identify specific areas where a four‑nation approach could add value. This may include shared principles, examples of best practice, workforce development, and better ways of sharing information when people receive care in more than one part of the UK. 9.9 In Wales, the Welsh Government will continue to build on our existing Advance and Future Care Planning framework. This will include reviewing and strengthening guidance, training and supporting materials. It will also continue to explore opportunities to improve how advance care planning information is recorded and shared safely across settings. 9.10 The Welsh Government’s approach is to strengthen and improve existing systems in Wales, while working collaboratively across the UK to promote shared understanding and continuous improvement, rather than introducing a single uniform process.

The Scottish Government accepts this recommendation in principle. While we do not support a single, mandatory UK-wide process – given the distinct legal, policy, and operational health and care structures across the four nations – we intend to work collaboratively with UK partners to identify where a four nation approach could add value and identify key areas where cross-border interoperability adds direct value to care.

We want people of all ages to be supported to have shared decision-making conversations with their health and social care team, families and carers about what matters to them, and in managing and planning for changes in their life, health and care. This approach is fully underpinned by the principles of Realistic Medicine and Value-Based Health and Care, prioritising shared decision-making, reducing unwarranted variation, and focusing on what matters most to the individual.

We did not always get this right during the pandemic and are aware that some individuals, particularly those in the Scottish Covid Bereaved Group who gave evidence to the Inquiry, did not receive the compassionate care or support that they and their loved ones deserved.

Reflecting on experiences in the pandemic, in 2023 we issued a letter from the Chief Medical Officer, Chief Nursing Officer, Chief Pharmaceutical Officer and National Clinical Director to NHS Boards, Health & Social Care Partnerships and the Convention of Scottish Local Authorities (CoSLA) which outlined a change in Scotland from anticipatory care planning to future care planning, to help make the process more understandable and accessible for people and their loved ones. Future care planning is wider in scope and has a different focus from previous approaches to care planning. While anticipatory care planning tended to have a narrow focus on uncertain future situations, such as the loss of capacity or when someone is dying, future care planning can help people of all ages living with long term conditions, disabilities, rare conditions, frailty in older age, or specific care needs, and not just those with life-shortening conditions.

We recognise that anticipatory care planning systems across Scotland have been inconsistent, and that multiple care planning or information sharing tools continue to be used and can often exist in multiple formats. Our aim is to work towards developing a standardised person-centred, digital future care plan for people of all ages in Scotland that can be held by the person and shared securely across healthcare and social care record systems, so people get the right help and support in a health or care emergency. This is included as a commitment within our recently published palliative care strategy (2025-2030) and associated delivery plan, and will align with the development of Scotland’s Digital Health and Care Record, which Scottish Ministers have a duty to deliver under the Care Reform (Scotland) Act 2025. Work to deliver this digital future care plan will build on learning from current care planning systems, including ReSPECT.

Work is underway within the Scottish Government to commission Public Service Delivery Scotland (PSD Scotland) and Local Government Digital Office to develop a business case for delivery of the Digital Health and Care Record. This will explore options, cost, benefits and risks of delivering the Record to ensure the work is suitably scoped, evidence based and provides value for money. Policy officials are liaising with officials in UK Government to consider how we can improve the sharing of health and care data across borders through mechanisms such as the Digital Health and Care Record and the Single Patient Record – a UK Government initiative aimed at joining up health and care data across NHS England. Crucially, the Scottish Government views health data interoperability not merely as an IT objective, but as a fundamental patient safety issue. Ensuring seamless, secure data flow across UK borders guarantees that clinicians in any nation can access critical care preferences in emergencies, eliminating clinical blind spots.

The Scottish Government also recognises the need for relevant professionals to receive training in having shared decision-making conversations about future care planning. We have commissioned PSD Scotland to collate and expand on future care planning resources on the Palliative Care Learning Hub for health and care staff, and to promote these educational resources widely to health and care professionals and other delivery partners.

We know from our experience in the pandemic, and from listening to those who lost loved ones during the pandemic, that Future Care Planning conversations (which used to be referred to as Anticipatory Care Planning (ACP)), especially those that include discussing the viability of Cardiopulmonary Resuscitation treatment (CPR), can be extremely challenging for both the individual and their loved ones, as well as the medical professionals involved.

During the pandemic we developed and shared guidance with health and social care professionals on how best to have these difficult conversations in a helpful and respectful manner, that followed the guidance related to ACP and Do Not Attempt CPR (DNACPR) discussions. Healthcare Improvement Scotland produced instruction videos so medical professionals could learn from their peers about how to broach these topics in a helpful and respectful manner. We want to build on this work.

We are committed to reviewing and updating the NHS Scotland Cardiopulmonary Resuscitation Integrated Adult Policy (2016) and this action is embedded in our palliative care strategy and delivery plan. This work will be informed by the recommendations of the UK Covid-19 Inquiry and the Scottish COVID-19 Inquiry, and will be aligned with the wider programme of work related to Future Care Planning and the Digital Health and Care Record. We will ensure that those with lived experience are involved in taking this work forward.

To support the wider use of these resources, we will develop national education resources for health and social care staff. Again, this is embedded in our 2025 palliative care strategy’s delivery plan. As outlined above, we have commissioned PSD Scotland to collate and expand on future care planning resources on the Palliative Care Learning Hub. These resources will help enable health and social care staff to have sensitive, person-centred and compassionate future care planning conversations with individuals and their loved ones (where appropriate), to help ensure they get the right care at the right time for their individual circumstances, as far as possible reflecting their personal wishes.

We want people to feel empowered and to have accurate, up to date information to enable them to have conversations with their health and care team about what matters to them when making plans for their care. To support this in 2025 we refreshed the public information about future care planning available on NHS Inform: Future care planning | NHS inform. We will continue to develop and provide inclusive, accessible information about future care planning.

For the reasons set out above, while we will continue to take action to improve outcomes, the government does not specifically intend to introduce, at this time, a standard process across the UK and the devolved governments.

No statement on delivery from Department of Health and Social Care has been found in the sources searched. This is separate from the response above.