Deaths in hospitals are common in developed countries (Smith-Stoner and Hand, 2012). In Australia, over half of expected deaths occur in these settings and it is estimated that the number of deaths across the population per year will double in the next 25 years (Swerrisen and Ducket, 2014).
Introduction
The provision of safe and quality end-of-life care is therefore imperative across our healthcare systems, including hospitals.
While hospitals are where many people die, the focus of care in hospitals is often on illness recovery and restorative healthcare (Slatyer et al. 2015).
Death can be the outcome of a failed resuscitation event, or a long-awaited last phase of life following a chronic complex illness. Both events can be emotionally laden for families and staff (Becker et al. 2017).
To be able to switch between the two very different paths of care requires well trained and able professionals who can not only identify when expected death is imminent, but to also change tack multiple times in any given shift.
Providing compassionate, comprehensive care requires attention to a wide range of factors.
Nurses are a main provider of care in hospitals, including neonatal through to end-of-life-care. A fundamental component of nursing care is caring for the patient’s body following death, which has been described as the continuation of person-centred care and the last thing that nurses can do for a patient (Anderson, 2017). Maintaining the personhood of the deceased sees nurses as well as other healthcare professionals (HCP’s) such as doctors and allied health professionals continuing personal care in much the same way as they would when the person was alive (Hadders, 2006).
Some nurses consider performing last offices as emotionally significant, especially if a relationship had been formed with the person when they were alive (Martin and Bristowe, 2015). These authors also describe last offices as a time of transition (spiritual), an honour to perform, and a demonstration of respect (Martin and Bristowe, 2015).
These processes, both practical and emotional, can be undertaken in conjunction with the care of families or significant others who may want to view the body after death or participate in after death care (Olausson and Ferrell, 2013).
In 2015 the Australian Government Department of Health-funded a project called End-of-Life Essentials (EOLE) (https://www.endoflifeessentials.com.au/). EOLE provides evidence-based online education for HCP’s who work in acute hospitals, aiming to increase their knowledge and confidence in end-of-life care and for them to consider how they can improve their practice. EOLE is based on the work of the Australian Commission for Safety and Quality on Health Care and each (free) EOLE online education module has an embedded evaluation framework (Rawlings et al., 2019).
Aim
This study aimed to evaluate the EOLE learner responses to the “Imminent Death” module by exploring learner views on how they say goodbye to deceased and dying patients.
Method
This study is approached via qualitative analysis undertaken on the statements made by learners in response to a tailored open-ended question posed at the end of a module, to give voice to learner experiences and views (Green and Thorogood 2018; Rawlings et al., 2020). Ethics committee approval was obtained from the University Human Research Ethics Committee for project evaluation (Project 7012). The participants in this evaluation are learners who have accessed the EOLE website and engaged with the Imminent Death module. Learners are HCP’s, comprising nurses, doctors, and allied health professionals. To date, there have been over 25,000 learners register for EOLE education, with the majority nurses, followed by doctors and allied health professionals. Data were included from any learner (self-selected) who completed the Imminent Death module evaluation from 6 May 2019 to 30 November 2019.
A total of 545 learner responses (statements) to the Imminent Death module free-text question: “How do you say goodbye to a patient in your care who has died?” we reextracted from 6 May 2019 to 30 November 2019.
Results
Fourteen subthemes from 504 learner statements were organised into three overarching themes: Supportive and comfort care, Say a personal goodbye, and Post-death practices
Supportive and comfort care
This theme relates to the importance of providing dignified comfort care to a patient who is dying as well as respecting the individual wishes of the dying patient and/or their family, reassuring the dying patient (verbally and through physical gestures) and providing adequate support to the patient’s family.
Provide dignified and respectful comfort care to the dying patient
“Being mindful and respectful of my words and body language when liaising with patient and/or family”
Talk to and reassure the patient
“I always talk to them to let them know who I am, what I’m doing, and who else is in the room with us”
Provide support to the patient’s family
“My focus after a patient has died is normally the family & friends; how to tell them (even when watching a resuscitation attempt, folk tend not to believe that someone has died until we say the words), do they want to spend time with the person, what will happen now, etc.”
Touch patient, hold hands
“I may be holding their hand at that time or touching their hand.”
Say a personal goodbye to the patient
This theme relates to the HCP saying a personal goodbye to the dying or recently deceased patient, eg. through saying goodbye or farewell, thanking the patient, wishing the patient peace, wishing the patient well, or saying a prayer for the patient.
Wish for the patient to be at peace
“I say quietly rest in peace ____, you can rest comfortably now.”
Say goodbye or farewell
“I say goodbye at their bedside.”
Thank the patient
“thank them for the opportunity to look after them.”
Wish the patient well
wish them the best wherever they go to after death.”
Say a prayer
“Offer prayers as prayer is food for the soul.”
Post Death Practices
This theme relates to the HCP carrying out specific practices after the patient has died, including caring for the patient’s body and their surroundings, personally reflecting on the patient’s life, debriefing with colleagues, and performing other tasks according to hospital protocol.
Care and preparation of the body
“Goodbye comes as we talk to them as we wash them and prepare them either for family viewing or for transportation to the undertaker.”
Quiet reflection on patient’s life and passing
“I take a quiet moment with the patient and say a few silent words in my head. It helps me to come to terms with the reality of the loss of a patient and allows me to begin my professional debrief/reflections (so that I separate my work from my personal life).”
Care for the patient’s environment
“I then like to ensure that their room is tidy and void of any medical equipment.”
Self-care, debriefing with colleagues
“Debriefing with the team and discussion about the person and their death is a regular occurrence in the team. Death audits are and discussion/debriefing are commonly undertaken.”
Follow hospital protocol
“I find a sense of closure in talking to relatives and doing necessary paperwork.”
Discussion
Many patient deaths take place in hospitals and will continue to do so, requiring that HCP’s care for these patients and their families, up to and including their death and the period immediately after (Rawlings et al., 2020). The emerging themes of ‘supportive and comfort care’, ‘saying a personal goodbye’, and ‘post-death practices’ reflect what HCP’s consider is required in closing the relationship they have had with a patient in their care. The EOLE online modules, including Imminent Death, are accessed by HCP’s who are mostly nurses. Nurses are at the frontline of providing end-of-life care to imminently dying patients, however, often lack specific knowledge to provide satisfactory end-of-life care (Sekse et al., 2018).
Dignified and respectful care was cited by our learners as important in the care of those who have died, noted as crucial to good healthcare (Barclay, 2016). In a study exploring physicians’ and nurses’ experiences in caring for dying patients in the ED, ‘dignity as a way of providing care’ was found and prioritised over other considerations (Diaz-Cortes et al., 2017). Other studies describe the need to consider patients as humans in preserving dignity after death (Jang et al., 2018). In practice development related to after-death care, the continuation of person-centred care is highlighted, with a ‘sympathetic presence’ in care of the body and care of the family, and suggestions that staff education is required in this area (Anderson, 2017).
This concept of a sympathetic presence is embodied through the provision of emotional support and establishing a connection. This is seen in the care of both patients who are dying and their families (Diaz-Cortes et al., 2017), with demonstrations of support and kindness seen in time spent by HCP’s with families and allowing time with the patient (Becker et al., 2017). Prior studies with bereaved family members have demonstrated the value of even small acts of kindness shown by HCP’s Walker and Deacon, 2016). Despite this, some research points to a lack of training or education in this area and communication in general (de Swardt and Fouche, 2017; Al-Qurainy et al., 2009). Nurses see family support as a significant aspect of the nursing role, with this support extending to the after-death period (de Swardt and Fouche, 2017; Witkamp et al., 2016).
The second theme to emerge was that of HCP’s saying a personal goodbye to the dying or recently deceased patient, perhaps in some way for their own comfort (Kessler et al., 2012). In a study of intensive care nurses, more than half of study participants described performing rituals just before and after death, such as saying goodbye, praying, and talking to the deceased, telling them what they were going to do next (Benbenishty et al., 2019). Use of the deceased person’s name is also seen as important (Anderson, 2017). Saying a personal goodbye may assist HCP’s in establishing closure following what can often be a stressful and emotional experience (de Swardt and Fouche, 2017).
The third theme to emerge was that of HCP’s carrying out specific practices after the patient has died, likely to be mainly nursing focused tasks. For example, caring for the body in some areas such as intensive care units includes removing equipment, lines, and devices, considered important for family viewing (de Swardt and Fouche 2017; Blum, 2006). Many nurses see care of the body as an important part of the role, approaching the deceased with dignity, comfort, and respect, and making them look presentable for their family (de Swardt and Fouche, 2017; Kessler et al., 2012). Caring for the deceased’s family can also be seen in the provision of a quiet space, where family can spend time with the body in private to say goodbye (Becker et al., 2017).
Staff grief or sadness has been described following a death in terms of reflecting on a patients’ life with colleagues (Barnes et al. 2020). In some organisations, ‘The Pause’ has been adopted, where staff honour the death of a patient, often following unsuccessful resuscitation. A 20-30 second pause to honour the person and the healthcare team’s efforts have been thought to assist staff emotional wellbeing (Bartels, 2014). Experienced nurses will often cope better with the death of a patient than young and inexperienced nurses, especially if they are seeing a death for the first time, and perhaps this is true of all HCP’s (Benbenishty et al., 2019). Prior research points to a lack of system-level recognition or support for HCP’s who may be experiencing emotional exhaustion, an unaddressed area in many care settings (Rawlings and Devey, 2020). Support in grief and loss can help prevent burnout, a well-considered concept in oncology (Granek et al., 2017), and one which can be addressed in part by recognition and acknowledgment of ongoing losses and the provision of support resources.
Implications
Being able to turn from a curative focus to one of comfort care allows everyone to in some way prepare for death, which is especially important in areas where the number of deaths are high. Just the process of completing the imminent death module has enabled HCP’s to consider their own demonstration of respect, coping and support at a patients’ end of life. Comprehensive care, a major component in the nationally consistent quality assurance mechanism ‘National Safety and Quality Health Service Standards, second edition’, includes support for the workforce providing end-of-life care and EOLE will continue work to support acute hospitals in this (Australian Commission on Safety and Quality in Health Care, 2017).
Conclusion
The Imminent Death module resonated with HCP’s in saying goodbye to patients who have died. Results from the data analysis gave voice to learners’ experiences and further demonstrated how this module might influence learners’ clinical practice. As so many HCP’s will at some point see patients under their care who are dying or who die, it is important they have the capability to provide appropriate professional care to patients and families. However, support is required for HCP’s who work in areas with ongoing losses and who regularly say goodbye to patients they have cared for. Managerial responsibilities lie in recognising and supporting staff, recognising education and training needs, and that HCP’s need time to say an appropriate and personalised goodbye to the patient they have cared for. There are also implications for HCP’s themselves as self-care and debriefing were raised by our learners as important considerations, as well as for managers in relation to staff grief and support. By addressing these factors, care of the imminently dying and their families (before and following a death) can be improved, leading to a better dying experience for all involved.
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Authors:
Deb Rawlings, BSc (Hons) Nursing, MPH, Senior Lecturer
Megan Winsall, BSc, Grad Cert Public Health
Huahua Yin, PhD
Kim Devery, BSocSci
All are at Palliative & Supportive Services, Flinders University, Bedford Park, South Australia.
