Talking about the future – particularly when progressive illness is involved – is never easy. Professor Mark Taubert, consultant physician in palliative medicine at Velindre University NHS Trust and NHS Wales clinical lead for future care planning, outlines how Wales has reshaped its national approach, placing person-centred care, equity and shared decision making at its core.
The COVID-19 pandemic pushed conversations about deterioration and end-of-life care into the spotlight, but it also exposed how challenging and emotionally charged these discussions can be. I might have a very constructive conversation about future treatment escalation with one patient, then pretty much the same discussion with another person and their family and it’s interpreted completely differently – a one-size-fits-all approach simply doesn’t work.
And this is understandable, because everyone comes to this with different prior knowledge and experience, which is why Wales has taken deliberate steps to redesign how we talk about treatment choices, planning ahead and caring at the end of life – introducing a national, person-centred model of future care planning (FCP).
The term itself came from a patient/carer representative who felt that ‘advance care planning’ was vague, too often misunderstood and did not really describe its purpose. In Wales, we listened to this feedback – and now FCP is used across NHS Wales (and NHS Scotland) to describe a structured opportunity for people to explore what matters to them, consider future treatment preferences and record these conversations so they can be shared across services.
This work has been adopted by the Welsh government and is aligned with the A healthier Wales long term plan for health and social care. It now sits within the NHS Wales Performance and Improvement group and has been operationalised into the Welsh government’s Six goals for urgent and emergency care, and supported by a national all-Wales DNACPR policy and a central hub of resources and training.
FCP is relevant at every stage of life and can include people with diminished or fluctuating capacity, supported for example through the record of agreed best interests (RBID) form and policy.
One of Wales’ most accessed education tools is the TalkCPR treatment ladder approach, which guides clinicians and patients through potential interventions, from least to most invasive. A conversation might start with intravenous antibiotics or fluids and gradually work towards more intensive interventions, including cardiopulmonary resuscitation and it’s high intensity but limited success in people with very advanced illness. Clinicians are encouraged to be open about likely benefits, burdens and outcomes, an approach that brings clarity, realism and reassurance.
Wales has placed inclusion at the centre of this work. An equality impact assessment years ago when the All Wales policy was introduced set out to clarify from the outset that DNACPR decisions are never based on learning disability or autism, and partnerships with Muslim Doctors Cymru, LGBTQ+ communities and Hospice UK have helped shape culturally sensitive resources. Patients and carers have been closely involved, including allowing camera access to a real DNACPR consultation with a woman in her thirties.
To make FCP genuinely shared, Wales is developing an electronic patient record flag for FCP discussions and forms, and all health boards and trusts will be able to add the FCP flag to their electronic Welsh Clinical Portal (WCP) entries. This will include the option of uploading specific forms, including patient-held copies of their last power of attorney for health and welfare, or advance decision to refuse treatment (ADRT). Work is also ongoing to integrate this Welsh Clinical Portal FCP flag for read and write updatability within primary care, via the All Wales WCP Instance. Phase 1 is almost complete, and we hope phase 2, where patients will have ability to interact with the system via the NHS Wales app, will be funded going forward.
FCP offers clarity at moments of uncertainty, reduces unwanted interventions and helps clinicians deliver care aligned with patients’ values. Most importantly, it supports meaningful, honest and individualised conversations. After all, patient care in progressive illness should be individualised to each person and those close to them. I believe that in Wales we are building a system to make that possible.
Learn more about FCP in Wales
- NHS Wales palliative and end of life care programme information for patients and carers
- Future care planning – a scoping review of the literature
- Advance and future care planning – strategic approaches in Wales
- NHS Wales advance and future care planning resources for healthcare professionals
- Change in definitions of advance and future care planning
- Advance care planning resources for England and Wales