Recommendations

Whilst there is much we can do at a local level to improve end-of-life care, it is also important to consider the impact of national policy and decision making. The All-Party Parliamentary Group (APPG) on Hospice and End of Life Care brings together MPs and Peers from across the political spectrum to campaign for high quality and accessible palliative and end-of-life care for all.

National policy recommendations

In April 2024, the APPG brought a Motion on hospice funding for debate to the House of Commons, following the publication of a report on Government funding for Hospices HUK . The group noted that the majority of funding for hospices in the UK comes from charitable donations. As part of the Health and Care Act (2022) Integrated Care Boards are also required to commission palliative care services. The APPG recommended a national review of funding for palliative end-of-life care, which considers additional NHS funding and financial support to hospices.

The Institute of Health Equity's 2020 report, The Marmot Review 10 Years On - The Health Foundation , makes several national policy level recommendations including how to ensure a healthy standard of living for all. Consideration should be given to these through a death and dying lens - for example, the impact of poverty on people's ability to work, to travel to appointments and to pay for funerals.

Recommendations from relevant NICE guidance should also be considered, particularly NICE guideline NG142: End of life care for adults: service delivery and NICE guideline NG31: Care of dying adults in the last days of life .

Recommendations from local insight

Based on evidence shared in this report, including conversations with a broad range of local organisations, I have identified the following key recommendations for organisations and systems. Whilst these recommendations could be applied universally it is important for these to be considered through an inequalities lens and with specific emphasis on the population groups highlighted in this report.

My recommendations are based on seven actions and an appeal: to evidence, encourage, educate, engage, enable, expand, and evolve better, more appropriate and targeted end-of-life awareness and care. It is our collective responsibility to drive this change and through these actions we will continue to bring further equity to the experience of death and dying in Kirklees.

I have also identified specific recommendations for individual population groups, separately. These can be accessed in our Inequity in experience at end-of-life section.

Please share the findings of this report with colleagues and others with an interest in death and dying.

Evidence

This report should be read in conjunction with other local and regional reports and recommendations. This includes:

• Healthwatch Kirklees | Dying in Kirklees - What matters. Dying Well Kirklees
• People's experiences of end-of-life care in West Yorkshire - Healthwatch West Yorkshire

Links to other publications can be found in the evidence and resources section.

Encourage

Encourage people you work or have contact with to have conversations about death, sooner, focusing on the individual's priorities and what matters most to them. This will help those approaching end of life, and their loved ones, to understand what the person's wishes are, what choices they have, how to get the most out of whatever time they have left, and how to put plans in place to ensure their wishes are respected. Having these conversations earlier avoids having to make difficult decisions quickly, when a crisis point has been reached. Early conversations may give people a greater awareness of how their illness is progressing and enable them to choose different priorities for their care rather than undergoing aggressive, unnecessary interventions that take an emotional and physical toll without improving quality of life. We shouldn't consider death and dying in isolation; it's also about living well with a life-limiting condition.

Talking about death and the deterioration of a person's health can also help reduce the stigma and fear associated with this topic, including acknowledging that people will not be able to do what they used to do as their condition progresses. It may be more palatable to talk about what is important to the individual in the way they would like to live and die, and how they can be supported to achieve this. Professionals should be encouraged to normalise these conversations, with patients and with other professionals across organisations, to help embed the importance of identifying what matters to people across the system.

The My future Wishes - A Guide to Advance Care Planning has more information on how to have these conversations.

Educate

Provide training and resources to enable death-positive conversations, and give people (patients, carers, relatives, and staff) the knowledge to better understand the system and process. This includes improved use of translated material and alternative means of communication, where appropriate. Raise awareness of pathways and options - for professionals to refer and signpost, and for patients and relatives to access the right services at the right time and feel confident about self-referring.

Example of relevant training: Trauma informed practice

Within the conversations we have had, it is clear that many people have experienced past or present trauma which impacts on their ability to plan for end-of-life care. Trauma can impact on people's ability to make decisions in the moment, which can have a significant impact on both people with a life-limiting illness but also their families across different parts of the journey - from diagnosis to deterioration. Previous trauma may also impact on facing challenging or emotionally heightened situations. It is vital that conversations and relationships are formed through this trauma-informed lens.

The West Yorkshire Trauma Informed Charter has more information on how to support our organisations to embed a trauma informed and responsive approach.

Engage

We have excellent services available in Kirklees. We should protect what we already have and seek to build on these services to ensure they are accessible to all who need them. Where appropriate, people and organisations should engage with palliative and hospice care to increase awareness of what is available and to understand the benefits. These services can support quality of life and a good death for everyone in every place. Building and nurturing a culture of engagement is vital to achieving a system wide understanding and commitment to delivering on this agenda.

Palliative and hospice care should be considered a normal part of long-term conditions care. This will ensure people with a life-limiting illness (for example, chronic organ failure, neurological disorders, respiratory diseases, and advanced progressive conditions including cancers) are supported from the point of diagnosis to focus on what matters to them. The 'dying well' programme in Kirklees should ensure this type of care is mainstreamed. We must work to make palliative and hospice care accessible and understood across all communities as an essential and everyday part of healthcare.

Enable

A person-centred approach is key. Through development of improved support mechanisms, and better conversations about what is important to people, shared across health and social care, we can enable people to make decisions that suit their individual preferences and needs, giving them greater choice as they approach the end of their life. As well as ensuring people have the information they need to make informed choices about their own care, enabling options may include better funding for carers, greater understanding and flexibility from employers, or a strengthened offer from the voluntary sector.

Expand

Build on existing assets and examples of good practice to expand the availability of end-of-life and bereavement support in communities. Taking services out into communities, rather than expecting individuals to travel to services, could be helpful. It is also important to continue to expand and promote the hospice offer for non-cancer patients.

Examples of local case studies and community assets are included in this report

Evolve

Services should evolve as our population demographics and generational attitudes change. The language we use and the support we provide must be inclusive and equitable for all. We should plan now for future need and mitigate the impact of process changes on specific population groups (such as any change to the death registration process that leads to delays in releasing the body for burial). We must be creative in our delivery of services, recognising the variations within each community and involving underserved communities in designing new material and approaches.

Services should recognise that some of the people they are already supporting have a life-limiting illness and should use this as an opportunity to discuss the individual's priorities for their end-of-life care. Consistency of approach across services would be beneficial, where people are accessing multiple services.

Services should also be aware of the impact of people with a life-limiting illness on the usage of services. There is sometimes a misconception that end-of-life care only happens in the very last days, whereas we know people in the last year of life will have more contact with all parts of the system, and particularly the acute services. Good palliative and end-of-life care can have a positive impact on demand and experience in every part of the health and care system.

Primary health care and community services could consider developing and piloting new pathways into palliative care. This could include using primary care data to identify individuals who may benefit from a palliative care pathway and associated support.

What individuals can do

Not everyone is able to plan ahead. However, where it is possible, there are several steps we can take to make things easier for ourselves and our loved ones.

Talking about death can be really hard. You might find the Hospice UK 'Dying Matters: How to talk about death and dying' guide a useful place to start.

Plan ahead, by considering the following list:

• Make a will
• Make a funeral plan
• Plan for your future care
• Decide about organ donation
• Think about your digital legacy (what you want to happen to your online information)
• Try to capture this information in a file or notepad alongside practical information that will help your loved ones deal with your affairs after death. This could include details of your direct debits, home energy supplier or even your gym membership
• Don't forget to speak to your loved ones about your wishes and let them know where this information can be found if they ever need it.
• Ask your loved ones about their end-of-life preferences too.
• Remember, the tell us once about a death service can help if you need to report a death.

Use our evidence and resources information to support you. If you are struggling financially, our cost of living support may help.

In conclusion

It is my aspiration that everyone in Kirklees is supported to live the best quality life they can until they die. To achieve this, we must work together to ensure those with terminal illness are supported to retain their dignity and identity, and are able to receive care that is personalised. These are key features of palliative and hospice care. However, there are misconceptions about the appropriateness and availability of these services that create barriers to access for people who could benefit from their support. We must therefore ensure that we are taking additional measures to break down the barriers that persist for people experiencing inequalities.

This report has highlighted a range of inequalities in the experience of death and dying in Kirklees. It has also shown that where we can't stop people from dying, we can help them live the best quality life they can until they die. When we focus on quality of life for people living with illness, and those important to them, the experience is better for everyone. As Director of Public Health, I am confident that by applying the above recommendations the system can be improved and local people will experience a better death, regardless of circumstances.