What should be the minimum standard of palliative care for people in the UK and how do we make it happen?
For well over a year now, the debate for and against assisted dying has been a dominant conversation within the field of palliative and end-of-life care. As Peers in the House of Lords continue discussions on the potential legislation, I think we need to reach a consensus on what good palliative and end-of-life care actually looks like and what every person should be able to access.
The proposed legislation requires that an individual seeking an assisted death has to have been offered the palliative care that is ‘available to them’. This is an important test. But without a national standard of what good looks like, we know that the variance in provision across the country will lead to significant inequality. And we know this because that inequality already exists, so what should be available to them?
Unless we can be assured that people have been provided with the same standards and options for their care, we will not achieve a position that is true to the principles of choice that are being debated.
James Sanderson, Sue Ryder's Chief Executive
What, therefore, could this look like? At Sue Ryder, we believe there are five basic criteria that should be met:
24/7 Access to Care and a Single Point of Contact
Patients and people supporting them need to be able to access advice, assessment, and symptom management (including access to medication and equipment) at any time, day or night. We know that the stress and anxiety of managing a long-term condition can result in feeling isolated and in some cases unnecessary trips to A&E and GPs for support and reassurance.
A single, coordinated access point (for example, a specialist palliative care helpline or community team) that promotes continuity, reduces unplanned hospital admissions and provides reassurance and timely support is needed for all.
The positive thing is that these models of care already exist in some areas of the country. Organisations such as Sue Ryder and Keech Hospice are working together to deliver comprehensive, well-coordinated care and support for people living in Bedford, while our new Sue Ryder services in the South East of England has a new 24/7 clinical advice line for Sue Ryder patients and healthcare professionals. However, we still have a long way to go before this level of coordinated access and consistency is available across the whole country.
Education and Empowerment
Patients and carers need to be equipped with information about their condition, symptom management strategies, and the availability of local support options and benefits.
The goal of this would be that it would allow more effective self-management and help people navigate the healthcare system, making sure they receive all the care and support they need, at a time when they need it.
We know that those who are activated and empowered to manage their own health, experience better outcomes than those who aren’t, and that the healthcare system also benefits with reduced GP visits and unplanned hospital admissions.
Communication, Coordination and Planning of Care
People tell us regularly that there is a deficit in open, honest, and ongoing conversations about prognosis, preferences, and care options. A named lead clinician who coordinates multidisciplinary input, ensuring continuity, advocacy, and a consistent point of contact for the patient, would improve outcomes significantly and should be a key feature within the development of the government’s planned neighbourhood teams.
Additionally, everyone living with a terminal illness should have the opportunity to engage in collaborative discussions with healthcare professionals to explore their individual values, treatment preferences and goals of care.
Where desired, this should lead to the development of a documented Advanced Care Plan (ACP) that guides future decision-making and ensures care aligns with the person’s wishes as their condition progresses. There should also be regular reviews to adjust an individual’s ACP to reflect changing needs and preferences.
Pain and Symptom Management
Conversations at an early stage with patients, including a comprehensive assessment of pain and symptoms, should be conducted. This will provide a baseline and can be used to determine any future care needs. It should include regular reviews and adjustment of treatment plans to maintain quality of life and dignity.
We often see people struggling with the management of their condition, not because of the limitations of medicine or support but because of the lack of time dedicated to getting things right for them.
Psychological and Emotional Support
Alongside physical symptom management we also need to recognise the wider challenges of living with a terminal illness.
Access to counselling, psychological therapies, and spiritual or pastoral care which supports both patients and their families will achieve significant improvements within anticipatory grief and bereavement.
This might seem like a long list, but these things are already happening in pockets across the country.
None of them need new money, none of them need changes to legislation or complex national policy, it just needs a commitment, clear specification and action.
The Modern Service Framework for palliative and end-of-life care provides the perfect vehicle to make this happen.
While there are great examples of the shift needed taking place, there is not a consistent, nationwide approach, and we know that in some areas there are significant gaps in care.
We also know there is strong evidence that these elements won’t just benefit individuals, they will impact hugely on the wider system, reducing hospital visits and admissions and avoiding crisis.
As debate continues through the next stages of the assisted dying bill, let’s take time to fix the position for palliative and end-of-life care.
Regardless of the outcome of the debate, surely equal access and a level playing field for everyone is one thing that all sides can agree on.
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