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What does good end of life care planning look like? What should you talk about, how and when should you talk about it? Big questions. It’s hard enough for any of us to plan for our time of declining health and dying. Much harder, still, for people with learning disabilities. And much, much harder still at this time of COVID-19. There is a danger that we talk about it at an unhelpful time or in an unhelpful way. This danger is greatest if there is a tick-box approach to “end of life care planning” (or, as it is often called, “advance care planning”), where the focus is on completed paperwork rather than on communication. In this webinar, Professor Irene Tuffrey-Wijne talks about what end of life care planning is (and what it isn’t), and talks through her top tips on how to approach this with people with learning disabilities. She will also discuss some of the particular challenges we face now, during COVID-19, in relation to end of life care planning.

It is important to be able to talk about end of life with the people, it is not a topic that should remain taboo. We must break through barriers and remove any stigma associated with talking about end of life care. The people we support are entitled to a ‘good’ death, everyone is. Staff teams must respect their end of life wishes and have those ‘difficult’ conversations so that they know what these wishes are. 

Advance Care Planning (ACP) is becoming increasingly important in ensuring that people receive good care and ultimately experience a “good death”. ACP can lead to less aggressive or invasive medical care, better quality of life near death, decreased rates of hospital admission, and people being more likely to receive care that is aligned with their wishes and dignity. It can be a difficult subject to discuss and can be confusing for health and social care professionals, staff and families, due to a lack of knowledge about ACP and a lack of awareness regarding the legal position.

The creation of a national network of medical examiners (MEs) was recommended in the Shipman inquiry and was alluded to in the Mid-Staffordshire and Morecambe Bay public inquiries. The Parliamentary Under-Secretary of State for Health, Lord O’Shaughnessy, confirmed in October 2017 that a national system of medical examiners will be introduced from April 2019. The ME reforms set out in the 2009 Coroners Act will be implemented nationally in two phases. By April 2019, NHS trusts should set up non-statutory schemes, based upon the national pilots (particularly in Leicester, Sheffield and Gloucester), funded in part from cremation form fees, in preparation for the commencement of a statutory scheme in 2020/21. A National Medical Examiner will be appointed, reporting directly to the National Director of Patient Safety.

Since the Government initially consulted on the package of Death Certification Reforms, new information about how Medical Examiner (ME) system could be introduced has been generated by the Department of Health and Social Care (DHSC), ME pilot sites, early adopters of the ME system, as well as from the Learning from Deaths initiative. This case study outlines the approach of South Tees Hospitals NHS Foundation Trust as one of the early adopter sites.

This short animated video explores the issue of prioritising equality in shared decision making, to ensure that all patients' and family members' values are sought and incorporated in treatment decisions.