End of life and Palliative Care
Dying is a social and spiritual and cultural event, and only part of that is to do with medicine. Only by talking openly - and honestly - with those closest to us, and those providing our care, can we help to ensure that our final wishes are met.
‘A good death – Molly’s story’ movingly tells the story of Molly and her daughter. Thanks to health and social care teams working together Molly was able to die at home. The film is a useful discussion starter for families wanting to discuss end of life care and helpful for anyone facing the imminent death of a loved one.
All families should expect the same compassion, level and quality of end of life care shown in this film.
Advance Care Planning
Advance care planning (ACP) is a voluntary process, in which patients can set on record choices about their care and treatment and, in particular, any advance decision to refuse a treatment in specific circumstances, including those where they may have lost capacity in future. Under the terms of the Mental Capacity Act (2005), formal outcomes of advance care planning might include one or more of the following:
- Advance statements. These are not legally binding, but can include a discussion of people's preferences, wishes and likely plans, ie what they wish might happen to them, type of medical treatment they would want or not want, where they would prefer to live or how they wish to be cared for. There are no set formats for these, but there are local and national examples available, such as Preferred Priorities for Care.
- Advance decisions to refuse treatment. These are potentially legally binding. They clarify refusal of treatment or what patients do NOT wish to happen, and involve assessment of mental competency to make that decision at the time. The Mental Capacity Act Code of Practice provides detailed advice about professional responsibilities and issues to consider in relation to advance decisions to refuse treatment, including how to check that one exists, and guidance on making, updating and cancelling them. The publication Advance Decisions to Refuse Treatment: A Guide for Health and Social Care Professionals gives guidance on this area.
- Lasting power of attorney (LPA). This allows patients to appoint someone to take decisions on their behalf if they subsequently lose capacity. It is in a prescribed form. Visit DirectGov: Making and registering a Lasting Power of Attorney.
Not everyone will wish to make such records. Less formally, the person may wish to name someone whom they wish to be consulted if they lose capacity. For those people who have capacity and who wish to participate, advance care planning can be an integral part of the wider care planning process, particularly in allaying anxieties that they will be subject to invasive procedures and / or denied access to appropriate care at a time when they may not be able to express their wishes.
Advance Care Plan Guidance ACP Leaflet
The National Palliative and End of Life Care Partnership cites six key aspirations for end of life care. These are: people to be treated as individuals; all to have fair access to care; people to feel comfortable and free from distress; care to be co-ordinated; all staff to be prepared to care; communities to be involved.
‘A good death – Molly’s story’ is one example of how those aspirations can be achieved through good, coordinated end of life care. We need you to talk to your loved ones about their wishes and not to be afraid to start a conversation with your doctor. You may find the following resources helpful:
- Find me help – directory of local end of life and palliative care services. Find Me Help is the UK's most comprehensive directory of services for people in the last years of life, their families, carers and friends.
- NHS Choices – What you can expect during end of life care
What you can expect during end of life care and the things you may want to think about. These include how and where you want to be cared for, as well as financial issues.
- NHS Choices – Planning ahead for the end of life
Includes advice on advance care planning, writing an advance statement, lasting power of attorney
- AGE UK – befriending service
Judy paid for a companion/carer to come and visit Molly twice a week to entertain and stimulate her and relieve Sabrie for a couple of hours: “Kate was a wonderful addition to Mum’s care package”.
- NHS Continuing Healthcare – Berkshire eligibility criteria
A package of care arranged and funded solely by the NHS. It is awarded depending on whether a person's primary need is a health need.
- Alzheimer’s Society – Living and dying with dementia report
Report exploring how care and support for people who are living and dying with dementia can be improved
- Every moment counts report - how good, coordinated care looks to people near the end of life.
People approaching the end of life should receive consistent care that is coordinated effectively across all relevant settings and services at any time of day or night.