Kathryn Clark

Care immediately after death

Background 

As nurses, people look to us for guidance at the moment of death. What nurses say and do in the first hour after death can have a lasting impact, psychologically, financially and physically on the lives of newly bereaved people.

My project works towards supporting nurses to be knowledgeable and able to give newly bereaved people all options at the time of death, in order to empower them to make informed choices. As a minimum, nurses should know the facts about people's options and their rights e.g. in Scotland there are no laws concerning dead bodies and funerals. 

 

What nurses say and do in the first hour after death can have a lasting impact, psychologically, financially and physically on the lives of newly bereaved people

 

This project also highlighted the effect on nurses caring for people at the time of death and the link between nurses’ wellbeing and their ability to provide person-centred care. It has the potential to shed light on how to turn beds around quickly and efficiently ‘manage death’ which may affect the wellbeing of both nurses and those in our care. 

The project will be beneficial to:

  • Nurses, by raising awareness of compassion fatigue, means of self-care, and the benefit of mindfulness to our care at the time of death
  • Patients and their relatives, by improving the chance that nurses will empower them to get what they need at the time of death for their long-term wellbeing
  • The public, by raising awareness of people’s options and rights and contributing to open conversation about death, dying and bereavement

Aims and objectives

The initial proposal was to create an education package, embed information into nurse education and create an awareness campaign for nurses about people’s options and their rights immediately after a death. Once I later found out the project timescale, I agreed with my mentor that this aim was not realistic within the timescale. We amended the aim to completing a literature search on the subject in order to inform further work.

woman with man on death bed edited

[...]  it is not helpful for everyone to see a body after death, indeed it can be harmful for someone to be forced to see a body they do not want to see. However, if someone wants to see a body it is harmful for them not to see it, even if it may be badly damaged. There is evidence that professionals can cause harm by making ‘choices’ for people on whether they should view a body

Activity to date

My main activity was a literature search of nursing care immediately after death. The paucity of direct research led to research into many interesting related areas e.g. bereavement theory, nurse’s wellbeing, mindfulness for self-care, death rituals, and media. I discussed the topic with Jo Wilson, Nurse Consultant and author of the current UK Guidance (Hospice UK and National Nurse Consultant Group (Palliative Care), 2015) and other research experts in sociology, psychology and bereavement theory. I attended the Marie Curie Research Conference and discussed my idea informally with researchers. Based on the UK Care After Death guidance, I devised an electronic survey to explore nurses’ confidence and their knowledge of policy and legalities in care after death. I trialled this informally with my nursing colleagues. I also collected nurses’ views via the RCN Pain and Palliative Care Forum and the Paediatric Palliative Care Forum.

My conclusions from these activities are:

  • There is media and anecdotal evidence in the UK that people are increasingly interested in keeping their loved ones close after death. This is common practice for several days in other countries e.g. the Netherlands
  • There is no direct research about the impact of relatives’ involvement in ongoing care after death. The most relevant research concerns the viewing of a body after traumatic death, see Chapple & Ziebland (2010), Haas (2003) and Mowll et al (2016). This research concludes that it is not helpful for everyone to see a body after death, indeed it can be harmful for someone to be forced to see a body they do not want to see. However, if someone wants to see a body it is harmful for them not to see it, even if it may be badly damaged. There is evidence that professionals can cause harm by making ‘choices’ for people on whether they should view a body

 

There is media and anecdotal evidence in the UK that people are increasingly interested in keeping their loved ones close after death


  • There are significant differences in policy and practice between adult and children’s nursing in the UK. It is common for parents to stay with a child’s body for some days after their death until the parents choose to leave. This is supported by children’s nursing practice. Adult nursing policy and practice does not support relatives staying close to a body until choosing to leave
  • Researchers indicate this is an area worthy of further study. A significant reason it has not been studied to date is the difficulty in academic researchers gaining contact with bereaved relatives immediately after a death. There may be opportunities within palliative care research
  • My small sample survey indicated that nurses, even ones who are confident in their practice, are not aware of the legalities of what relatives can do after a death, the typical physical changes to a body in the days after a death and many aspects of the UK Care After Death guidance

 

Nurses [...] are not aware of the legalities of what relatives can do after a death, the typical physical changes to a body in the days after a death and many aspects of the UK Care After Death guidance
  • Compassion fatigue is an issue related to nurses frequently facing death. The level of emotional exhaustion and depersonalisation affects a nurse’s ability to provide person-centred care at the time of a death. It is therefore important for nurses to understand this and to learn self-care
  • A one minute mindful pause used in the US at time of death could be helpful to the UK’s nurses

baby shoes vintage   

There are significant differences in policy and practice between adult and children’s nursing in the UK. It is common for parents to stay with a child’s body for some days after their death until the parents choose to leave [...] Adult nursing policy and practice does not support relatives staying close to a body until choosing to leave

Outputs to date

 The outputs from this project relevant to the potential for ongoing work are:

  • Knowledge of the lack of evidence base to support current adult nursing practice
  • Personal contacts with knowledgeable peers and researchers in the field
  • A proposal for an agenda item at RCN Congress put forward by the Pain and Palliative Care Forum

 

Compassion fatigue is an issue related to nurses frequently facing death. The level of emotional exhaustion and depersonalisation affects a nurse’s ability to provide person-centred care at the time of a death [...]

exhuasted nurse

Lessons learned 

This project has been an invaluable learning experience for me, extending me beyond my comfort zone, giving me experience of the nursing profession beyond my familiar nursing role and an insight into the academic world.

Key learning points are:

  • The importance of obtaining peer reviewed evidence to support a proposal for a change in practice
  • The difficulty in proposing practice developments when no direct evidence is available
  • The benefit of mentor support for developing my ideas
  • The generosity of peers with information, inspiration and time for discussion
  • An invaluable personal learning was the signs and effects of compassion fatigue

Reflections on impact

This project has not yet been implemented in a service context. 

Current practice and gaps in it have been reviewed through consideration of current literature and policies, discussion with experts in the field and through a small-scale survey of colleagues. 

 

A one minute mindful pause used in the US at time of death could be helpful to the UK’s nurses

 

The future impact on service provision could be through improving care to bereaved relatives, but also indirectly by addressing nurses’ wellbeing.

The way forward

It has not been possible within the timescale of this project to generate outcomes which can immediately be implemented more widely at this stage. The outcomes can be developed, however, for implementation directly throughout most adult nursing practice.

The proposed next stage towards implementation is to prototype a retreat programme for nurses to test the effects of bringing mindfulness to the time of death. 

Sustaining momentum  

I would like to work towards nurses being knowledgeable and able to empower relatives in choosing their options at the time of death, particularly around keeping the body of a loved one at home.

For the next step I would like to prototype a weekend experiential retreat for nurses, which would support nurses to provide person-centred care at time of death from the perspective of both bereaved relatives and considering nurses’ wellbeing, since I now believe these are intimately interlinked. 

The retreat would primarily use the tools of mindfulness and nature to both reflect on care at time of death and nurture nurses’ wellbeing. It would also include an educational element for direct application in practice.

  • Draft learning outcomes for the retreat are:
  • Interpret the signs of compassion fatigue and burnout in relation to your own experience
  • Demonstrate mindfulness techniques and other practices for your self-care
  • Discuss your beliefs about death
  • Identify the key legal rights relevant to relatives at the time of death
  • Describe how to empower relatives with decision making at the time of death
  • Formal evaluation of this retreat would inform the next steps to embed the project into daily practice

References

Chapple, A and Ziebland S (2010) Viewing the body after bereavement due to a traumatic death: Qualitative study in the UK, BMJ (Clinical research ed.); vol. 340, c2032.

Haas F (2003) Bereavement Care: Seeing the body, Nursing Standard, 17 (28) 33-37 has a good summary of earlier research.

Hospice UK and National Nurse Consultant Group (Palliative Care) (2015), Care After Death: Guidance for staff responsible for care after death, Hospice UK.

Mowll, J, Lobb, E A and M Wearing (2016) The transformative meanings of viewing or not viewing the body after sudden death, Death Studies 40 (1), 46-53.