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Discussion

Creating a ‘wish list’ to prompt conversations on end-of-life care

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A group of student nurses developed a wish list to prompt patients and health professionals to have conversations about end-of-life care

Abstract

When people approach the end of life, it is important to find out how they wish to be cared for, so we can help them fulfil their wishes and achieve what would be, in their eyes, a ‘good death’. However, broaching the subject can be difficult. After doing an end-of-life care (EOLC) module and gaining experience of EOLC during hospital placements, student nurses from London South Bank University have developed a ‘wish list’ which, when used as a leaflet or poster, can prompt EOLC conversations and foster advance care planning. This article discusses the ideas behind this ‘wish list’ and explains how it was developed.

Citation: Fallows L et al (2018) Creating a ‘wish list’ to prompt conversations on end-of-life care. Nursing Times [online]; 114: 1, 47-49.

Authors: Lisa Fallows, Jessica Matondo Mambu, Sophie Kemp, Bethany Campbell, Rodelia Wansi, Adetola Adesina, Audrey Osei Owusu, Oluwakemi Yusuf, Bosede Alewi and Abiola Bello are third-year student nurses (adult nursing) at London South Bank University.

Introduction

Everyone has wishes about how they would like to be cared for towards the end of their lives and how they would like to die. However, death and dying are still sensitive subjects – and even more so when they are discussed with people who have been diagnosed with a terminal illness (Tagney, 2014).

We are a group of third-year students in adult nursing at London South Bank University. In our second year, we undertook a module on end-of-life and palliative care; this included information on advance care planning (ACP) (Box 1). To encourage conversations around end-of-life care (EOLC) wishes and ACP – both between patients and relatives and patients and health professionals – we came up with the idea of a ‘wish list’. In this article we explore this idea and explain our work around it.

Box 1. Advance care planning

Advance care planning (ACP) allows patients to plan ahead and make decisions about care they may receive in the future (Detering, 2010), in the event that they are no longer able to express their wishes and make decisions. Through ACP, health professionals and patients can discuss questions that may otherwise be overlooked or ignored.

An advance care plan can include:

  • ‘Do not attempt cardiopulmonary resuscitation’ (DNACPR) orders
  • Advance directives, such as living wills and durable powers of attorney
  • Advance decisions about treatments and interventions.

Patients can also extend their advance care plan to include funeral and burial/cremation arrangements (Henry and Seymour, 2007).

The first step of ACP is to initiate conversations between patients and their families, and between patients and the professionals who are caring for them. Nurses have an important role to play in starting these discussions, which must be entirely patient centred (Meghani and Hinds, 2015). One aim of our wish list was to ensure that ACP is not undertaken as a routine documentation exercise, but supports real and meaningful conversations that are holistic and person centred.

Why a wish list?

Everyone has different ideas on death and dying based on their life experiences (Graham et al, 2013). People’s views on both of these issues vary depending on whether they have been exposed to death and what their life expectancy is (Faull et al, 2012). We were interested in how death is viewed by patients, as we wanted to better understand the emotions and thoughts of those who are dying.

We have spent time on hospital wards with registered nurses who are caring for patients at the end of life, and have seen how the presence of nurses at the bedside can enable the development of positive relationships with patients and families, as outlined by Reinke et al (2010). Having accumulated some clinical experience of EOLC, we met to discuss what death, dying and EOLC meant to us, both from a personal and a student nurse’s perspective. The idea of an EOLC wish list to support discussions between patients, families and health professionals emerged.

We determined areas that we wanted to research; each of us was assigned one area to explore, and we met on a regular basis throughout the semester to develop our wish list. During our meetings we realised that we all had different views on which element of the wish list was the most important. These views stemmed from our experiences of care on the wards, our own personal experiences, and our cultural backgrounds.

The wish list is composed of key words (Box 2). Some of the evidence supporting its elements are discussed below. Box 3 tells more about our experience of EOLC.

Box 2. Key words

Communication – Religion and prayer – Organ donation – Empowerment – Nursing – Dignity – Respect – Hope – Faith – Family and friends – Will – Peace – Love – Burial and cremation – Compassion – Spirituality – Wishes – Individual – Personalised

Box 3. Our experience of end-of-life care

Before undertaking the end-of-life care (EOLC) module, we felt uncomfortable participating in discussions with patients and relatives on their EOLC wishes. There were a number of reasons for this, including our lack of experience, lack of confidence, and concerns that we would be initiating conversations that would be upsetting. However, the most important reason was our lack of awareness of the importance of advance care planning (ACP).

From what we have seen in practice, we have realised that ACP requires not just one conversation, but several, as patients’ thoughts evolve, their condition fluctuates, and their wishes change over time. The wish list has provided a visual trigger for patients and families to think about the different elements of EOLC. It has also encouraged patients to be open about their feelings, needs and wishes, and has allowed us to facilitate these conversations and embed them into the care we give.

Wishes

A good death has been described as “the best death that can be achieved in the context of the individual’s clinical diagnosis and symptoms, as well as the specific social, cultural and spiritual circumstances, taking into consideration patient and carer wishes and professional expertise”.

What makes a ‘good death’ will obviously be different for each person. To express their wishes, patients need ongoing communication with clinical staff (Nursing and Midwifery Council, 2015). Staff need to be aware that patients’ wishes can change from one month, one week or one day to the next – or even from one hour to the next – as their condition deteriorates (Sleeman, 2013). This means their EOLC needs can change quickly and ACP should be viewed as a dynamic process.

Hope

Hope is important at the end of life (Kirby et al, 2014), both as a coping strategy and as a determinant of quality of life (Mok et al, 2010). Matzo and Hill (2015) emphasise hope as a key component in the emotional journey towards death. Henry and Wilson (2012), likewise, identify it as a factor that helps patients and families through the difficult times leading up to death.

Kinghorn and Gaines (2007) have outlined a conceptual model of hope based on:

  • Comfort – patients need to know that their personal and environmental comfort is ensured and their symptoms are well managed;
  • Attachment – this can be achieved by maintaining a caring and welcoming environment, and recognising and addressing patients’ and families’ needs (Timmermann et al, 2015);
  • Worth – this can be enhanced by ensuring that patients are cared for with dignity and respect.

For someone approaching the end of life, hope will likely be linked to having a good quality of life. Hope can come from reassurance that:

  • Their relatives are prepared, supported and cared for
  • Their symptoms will be well managed;
  • They will be able to die in their preferred place (Mendes, 2014).

Compassion

Compassion is expected of all nurses and should be reflected in the care they give at all times (Bloomfield and Pegram, 2015). By showing compassion, nurses can improve EOLC and enhance patients’ and families’ experiences (National Institute on Aging, 2015)

Compassion can be demonstrated by communicating with respect, actively listening, regularly checking that patients are comfortable, giving regular mouth care, asking relatives and friends if there is anything they want the nurse to do, offering a hot drink – or simply being there (Westwood, 2010). Being present for patients and families is a key role of nurses in EOLC.

Empowerment

Another key role of nurses in EOLC is to ensure patients’ needs are met and their preferences respected, in accordance with the NMC Code (NMC, 2015). This states that “we should encourage and empower people to share decisions about their treatment and care”. This promotes autonomy and empowers patients to make decisions about their care. ACP is key in this regard, as it ensures patients’ wishes are elicited, heard and respected.

Family and friends

Support from family and friends is often extremely important to a dying patient, but most important of all is to respect the patient’s wishes about how much input they want from their family. Byock (2014) explains that patients who are dying often find it difficult to express what they feel for fear of burdening family and friends. Patients and families alike may feel anger, sadness, guilt and resentment (St Francis Hospice, 2016).

Spirituality

The thought of dying can be distressing and frightening. When patients are told they are near the end of life, various questions may go through their minds – “Why am I dying?”, “Why is this happening to me?”, “What will happen after I die?” – and they may look for answers or comfort in their religious and/or spiritual beliefs.

The National Council for Palliative Care highlights the importance of pastoral care. Spiritual or religious beliefs can help patients make sense of their lives and find answers to their questions (Department of Health, 2010). The RCN (2011) notes that it is important for patients to explore the meaning of their existence.

In their role as patient advocates, nurses should assess and address patients’ spiritual needs and preferences (Sartori, 2010), giving them opportunities to prepare for death. Nurses should treat patients as unique individuals and be willing to learn about different traditions, religions and cultures. Discussions should be conducted in a sensitive manner, taking into account culture, spirituality and religion. Bereaved families will be comforted by the fact that their relative’s spiritual and religious wishes have been upheld.

Poster

We made the wish list into a poster that was presented at Queen’s Hospital in Romford (where we did our placement) during Dying Matters’ Awareness week in May 2016. To embody the spirit of our wish list, we chose the image of a dandelion (Fig 1) to illustrate the poster.

The wish list poster was one of a number of posters picked by Jane Crussell, senior lecturer in adult nursing at London South Bank University, to feature on the stand. The EOLC team manned the stand in the hospital’s atrium so they could provided the public, patients and health workers with information about ACP and EOLC.

We spoke to the public, patients and health professionals about our poster, our reasons for designing it and our hopes of what it could achieve. Feedback was positive, health professionals and the public appeared open to the idea of talking about EOLC and saw the poster as a way of initiating these conversations.

picture1

Fig 1. Wish list

Conclusion

Delivering good EOLC involves having sensitive and thoughtful conversations with patients and families about their wishes and preferences. Nurses need to be able to initiate, facilitate and be part of these conversations. They have a role to play in empowering patients, as well as in ensuring families have positive experiences of the last months and weeks of their relatives’ lives. As Dame Cicely Saunders et al (1995) explained: “how people die remains in the memory of those who live on”.

Our EOLC wish list can take the form of leaflets given to staff, patients, carers and relatives, or of posters put up in wards to raise people’s awareness. We hope it can contribute in spreading the word about the importance of conducting ACP and encouraging open discussions, which is essential if we want to help patients at the end of life achieve a good death. 

Talking points

  • Patients near the end of life may find it difficult to broach the subject of how they would like to be cared for and die
  • Nurses have a role to play in eliciting and discussing patients’ end-of-life care (EOLC) wishes through advance care planning (ACP)
  • Patients at the end of life and their families need to have hope, receive compassionate care and be empowered
  • EOLC must be sensitive to patients’ cultural, religious and spiritual beliefs and needs
  • A group of student nurses has developed an EOLC ‘wish list’ that can be used in ACP
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