Helping patients and families plan for end of life

Compasson in Dying guidance provides new approach to engaging people and communities in planning for the end of life.

Compasson in Dying guidance provides new approach to engaging people and communities in planning for the end of life

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Nurses play a key role in supporting patients and families in end of life care (Royal College of Nursing 2015). However, it is sometimes difficult to start these conversations with patients and their families. Building on the experiences of its recent My Life, My Decision programme (Compassion in Dying 2014a), the charity Compassion in Dying provides guidance to health professionals working with people who want to think about their on going care needs and wishes as they approach the end of life.

Why is planning valuable for patients?

The Mental Capacity Act 2005 sets out two ways individuals can ensure their wishes are followed if they lose capacity to make treatment decisions for themselves: registering a lasting power of attorney for health and welfare and/or completing an advance decision to refuse treatment.

2 out of 3

registered UK nurses surveyed revealed that they do not have sufficient time to provide high-quality care for patients who are dying

Recent research found that advance care planning results in people having earlier access to palliative care, receiving care and treatment more closely aligned with their preferences and are most likely to die in the place of their choice (Compassion in Dying 2016a). It also showed that planning improves relationships and communication between families and healthcare professionals, helps to reduce conflict within families and between families and staff, and contributes to a more positive bereavement process for families.

Despite the benefits of planning, of the 82% of those who say they have strong wishes about how they would like to be treated at the end of life, only 4% have set out their wishes in a legally binding advance decision (Compassion in Dying 2014b). This is where dedicated charities and healthcare professionals can collaborate to make a difference.

How do we support individuals to plan?

Compassion in Dying has developed two practical resources aimed at addressing the challenge of talking to patients about end of life care. The Toolkit for Healthcare Professionals, developed in collaboration with professionals from emergency medicine, geriatrics and nursing, aims to support professionals discussing advance care planning to understand the laws and practical steps involved (Compassion in Dying 2015a). Starting the Conversation seeks to empower individuals to talk about their wishes for care and treatment with their family and doctor (Compassion in Dying 2015b).


The percentage of people (of 82%) surveyed who have set out their wishes in a legally binding advance decision for end of life care

Planning can also be a time consuming process; a recent survey among 996 registered nurses revealed that more than two thirds of UK nurses feel that they do not have sufficient time to provide high-quality care for patients who are dying (Nursing Standard and Marie Curie 2017). This is when having a trusted referral partner with expertise in supporting individuals to plan and record their treatment wishes becomes extremely valuable. To meet this need, Compassion in Dying provides free advance decision forms and free telephone support to healthcare professionals and members of the public on planning for future care.

Compassion in Dying works with black, Asian and minority ethnic (BAME) groups to help them document their end of life treatment preferences. These documents help to clarify religious and cultural preferences that may be different to those of the wider population.

Useful information on supporting south Asian and Somali communities to plan can be found in Tea, Talk and Samosas (Compassion in Dying 2016b) and Tie Your Camel First (Compassion in Dying (2016c). Understanding that traditional family structures may not apply for many older generations of lesbian, gay, bisexual and trans people, Compassion in Dying produced a simple resource to support them to set out who they would like to have make decisions for them in the event they lost capacity to make treatment decisions for themselves (Compassion in Dying 2016d).

An important premise underlying these efforts and resources is the recognition that nurses and other health professionals are better positioned to deliver the best possible care when patients have had the opportunity to record their treatment wishes and goals (Compassion in Dying 2014c).

How do we build our own capacities?

Compassion in Dying guidance can valuably signpost people to relevant organisations and help healthcare professionals be ready to read, understand and implement the advance care plans patients and/or their families subsequently submit. Encouraging adult patients to do this as early as possible as highlighted in the recent Make It Your Decision campaign would also help to ensure that patient preferences are appropriately recorded and respected regardless of their age.

If you are interested in training for your team or working together on community-based approaches to planning for future treatment contact Compassion in Dying on 0207 479 7736 or email info@compassionindying.org.uk.

Karen Sumpter is a trustee of Compassion in Dying and works as a senior lecturer for adult nursing at the University of Hertfordshire.

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