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Given the universality of death, examining the quality of clinical care around dying should be part of routine healthcare.[[1]] A poor quality experience can lead to a more complex grieving process for family/whānau and distress or burnout for staff. When the death is anticipated, family/whānau distress can be reduced by allowing the patient, the whānau and the healthcare team to understand and prepare for what is happening.[[2]]
There is no agreed consensus on what constitutes a “good death” and how to define quality with respect to the dying process. Quality measures must take account of the process of dying as well as the death as an acute event.[[1]] Developing international standards is intrinsically difficult as dying is a dynamic process, deeply personal to the individual.[[3]] Often, a proxy is required to speak for the deceased, such as a family member or health professional.[[1,4–6]] These opinions vary greatly depending on their relationship to the patient and their own personal values.[[1,3,6,7]] The retrospective nature of exploring a person’s death also makes defining exact outcomes subject to retrospective bias.[[7,8]]
Most tools evaluating dying and death are based on a mixture of literature reviews and expert opinion, including both qualitative and quantitative research.[[6]] Scales are based on differing frameworks and definitions, developed in different cultural settings and most use quantitative measures such as Likert scales.[[1,5]] Reliability and validity has not been robustly tested for many of the measures.[[1,6]] Meier et al., in their 2016 literature review of “defining a good death”, found that physical symptoms are well studied in comparison to other aspects of the dying process.[[5]] They suggest that future work should include a wider variety of ages and cultures.[[5]] Furthermore, it is acknowledged that any instrument designed to measure dying and death must encompass physical, psychological, cultural, and spiritual aspects.[[7,9]]
A previously published quality of dying audit tool was created as part of a comprehensive framework of clinical audit in Canterbury District Health Board (CDHB).[[10]] CDHB services a 0.5 million population and has a single tertiary centre, Christchurch Hospital (CH), which is the largest hospital in the South Island of New Zealand. CH has an 800 bed capacity, with over 1,000 inpatient deaths per year.
The quality of dying audit tool is used on a regular basis across the CDHB, and involves a detailed review of clinical documentation looking for factors known to contribute to quality patient and family/whānau experiences of dying and death. It focuses specifically on holistic, cultural and spiritual domains. As an extension to the chart audit, staff directly involved in caring for the person were surveyed regarding their own perceptions and experiences of that death and the dying process that preceded it.
The purpose of this study was to explore whether a survey of this type was feasible and acceptable to staff, and to understand what they perceive contributes to the quality of patient and family/whānau experiences of dying and death in an acute hospital setting.
Method
In 2016, the Canterbury Regional Blood and Cancer Service at Christchurch Hospital (CH) developed a survey with the aim of retrospectively capturing staff members’ views of recent deaths of patients under their care.
This survey was piloted with staff members who cared for 13 patients who died in the Oncology ward in mid-2016. A second round of pilot testing followed in December 2016 on a further nine patients, to test the survey distribution and operationalisation processes. Deaths of inpatients in the oncology, respiratory and haematology departments were identified from daily mortuary records. The survey was sent via a web link to all staff in the respective departments within two working days of the death, inviting those who had cared for the patient prior to death to respond. The survey was hosted on RedCap (RedCap Consortium, Vanderbilt) and filled out anonymously, other than identifying their role in the patients care. There were no patient identifiers contained in the email to preserve confidentiality, but upon completing the survey, staff were asked to enter the National Health Index (NHI) number and name of the patient, so that responses for the same patient could be collated.
Feedback received from this round of pilot testing refined the delivery method, such that individual staff involved in the care of the patient in the last 48 hours of life were identified from the clinical record and survey web links subsequently targeted to these individuals only. In addition, as a result of this round of pilot testing, the two questions around family/whānau support needs were merged (Items 8 and 9, Appendix 1). A separate free-text section was added which allowed staff to comment on the needs of the family/whānau. An option for staff to request further support was also added. Appendix 1 shows the final version of the survey, indicating where changes were made after review.
The survey was implemented across selected departments in CH (Oncology, Bone Marrow Transplant Unit, Respiratory, Emergency Department (ED) and General Surgery) between November and 2016 and January 2017. A single researcher (CW) was responsible for identifying deaths on a daily basis and coordinating emails to staff.
Quantitative analysis included descriptive statistics. Answers that were ranked, “strongly agree” and “agree” were added together, as were “strongly disagree” and “disagree”.
Qualitative analysis was used to order data extracted from the free-text questions (10, 11 and 12). Inductive thematic analysis was determined as appropriate to accurately give voice to participants’ commentary. Four members of the research team (CW, RW, KG and SP) agreed the design and development of two cycles of coding.[[11]] The first cycle of coding involved descriptive analysis that examined responses to each free-text question and identified similarities and differences between participants’ perspectives and experiences on aspects of care. The second cycle of coding involved two further review processes, firstly pattern coding was utilised to collate and triangulate overall responses where the content being discussed was similar. Descriptive coding was then utilised to explore the depth of content areas being discussed by participants. The inclusion criteria for each code, drawn from the descriptive, and category, drawn from pattern coding, was discussed and defined by the research team during data analysis. The research team then further identified which categories articulated the same phenomenon and grouped these as themes. Two of the coders have extensive experience in palliative care as physicians (RW, KG), three of the coders have qualitative expertise (RW, KG and SP), and one of the coders was being mentored in the qualitative methodology and was a medical student (CW).
This study was out of Health & Disability Ethics Committee scope of review. Internal ethics approval was granted by the CDHB Oncology Department Low Risk Ethics Board.
Results
Quantitative analysis
A total of 169 staff responded to the deaths of 51 patients. The majority of survey respondents were nurses (50%), followed by doctors (39%). A small percentage of staff identified themselves as allied health professionals or other (8% and 3%, respectively).
Overall, 71.3% of the staff surveyed agreed or strongly agreed that “end-of-life care was of a high standard”. The highest scoring domain was for physical symptoms, with 68% of respondents agreeing or strongly agreeing that physical symptoms were well managed. The emotional and support/social needs domains recorded lower scores, at 65% and 50% respectively (see Table 1). Due to the changes made after the second pilot testing, the totals seen in Table 1 for each item is not constant, and represents the total number of answers for that item. The most disagreed with item was that the “patient’s physical symptoms were well managed” at 13%, followed by the “patient’s family/whānau emotional needs were met” at 12.2%.
View Table 1.
There were three free-text questions that staff could choose to answer. The overall response rate of answering at least one free-text question was 86.4%. Of those that only answered one free-text question, 80% answered the “what aspects of the end-of-life care went well” text option. The response rate of each free-text box ranged from 69.2% (“what aspects of the end-of-life care could be improved”) to 81.7% (“what aspects of the end-of-life care went well”). Of note, the free-text box “comments on family/whānau emotional/support/social needs met” was added after the second round of testing, and there was a 74.5% response rate for this option.
The last item on the survey allowed staff to request extra feedback in more detail if they required. Thirteen staff requested extra feedback. An email was sent to these staff offering additional support, but no staff took up the offer.
Qualitative analysis
Three themes were identified through the coding processes; coordinated care, culture of practice and complexity of care.
1. Coordinated care
Coordinated care encompasses levels of service delivery seen by staff as pivotal to support both the patient and their family/whānau through their last days of life. Coordinated care was inclusive of complex case needs, communication of a diagnosis of dying, supporting family/whānau at the point of death and the importance of teamwork.
Complex case needs describes the balance between staff providing support, whilst allowing the patient and family/whānau to feel empowered to make decisions and be involved in care. This was challenging when patients presented late or in a rapidly changing situation. Participants acknowledged issues such as lack of cohesion amongst clinical teams, declining services such as specialist palliative care and reduced resources on weekends. For example:
“It was extremely difficult to communicate to the family, as many didn't speak English, and only one member had a fluency in English. It was very hard to explain why we were doing things, access to the patient was often limited by family (having to translate) which made it hard to assess the physical needs of the patient. Some of the nursing team were reluctant to observe the cultural and religious requirements the family had surrounding death.” – P1
Communication of the diagnosis of dying was viewed as being pivotal to supporting the patient and their family/whānau. This included ensuring the trajectory of anticipated death was clear and appropriate supports were put in place to allow the patient and their family/whānau to make decisions. Participants were concerned that when an uncertain or unstable trajectory was identified, this was more likely to impact on the experience of dying. Conversely, participants also identified the need to ensure that for patients with a longer dying trajectory, the dying process was still discussed.
“The death was quick and sudden even though expected, and although family were not emotionally prepared they had been supported and informed that he was dying.” – P2
Poor communication fostered mistrust, which included patients not understanding their prognosis and condition severity, an inability to navigate language barriers, cultural differences and inability to comprehend information. The opposite was also the case; good communication clearly helped family/whānau navigate the dying process more easily.
“A family meeting was held where the patient and their family were made well aware that the patient was in his final days. There was a clear plan of which family member to call if the patient deteriorated, which was done.” – P3
Participants regarded teamwork as an important aspect of a good death. As multiple staff were involved in the care of a patient, it was important that teams had good cohesion and were able to work together, even when language and communication issues were present.
Culture of practice
The culture of practice encapsulates the concepts of dignity, respect and trust in the relationship between staff and a patient, i.e., values that shape the culture of practice. This culture of practice was inclusive of: after death and bereavement care, spiritual and cultural needs/practices, engagement with the family/whānau and building a relationship with patients and family/whānau which enabled trust, dignity and respect.
Participants identified that when cultural needs were respected, it often required support and resource, and not all were easy to access due to resource constraints:
“It was unfortunate that there are limited community resources catering for Muslim needs as X’s situation was very unique…” – P5
Dignity and respect of the patient and their family/whānau was a critical element. Participants described various roles that demonstrated how they enacted dignity and respect. Examples included the opportunity to assist a patient to get married while in hospital, through to care of the patient’s body after death.
“X’s partner was able to sleep in an adjoining bed which we positioned so that they could cuddle together.” – P6
Participants discussed the challenges in identifying spiritual needs of a patient, and therefore the difficulty in knowing whether these needs were met. Participants shared spiritual wellbeing signposts, such as words like “blessed” within their clinical encounters or a feeling that the family were prepared for death. A frequent area of concern was lack of privacy for the patient and family/whānau. The lack of appropriate facilities within their work places meant family/whānau were left to grieve in hallways or public spaces.
“Facilities are inadequate to support families in the ward environment. It is always sad to see families needing to grieve in public places.” – P8
Participants identified that family/whānau engagement and involvement was a marker of a positive culture of practice. Participants also noted a less ideal culture of practice when patients were unable to communicate, had no family/whānau to guide them, or took a long time to build trust with staff.
“Karakia, himene performed at the request of patient who was fully comprehensive & focussed… last wishes of X were the responsibility of the daughters with the manaaki, tautoko, awhi of all those present and administered by X’s brother… X’s immediate whānau were able to stay overnight with X if they wished…” – P10
3. Complexity of care
This theme consolidates content which describes both the complexity of physical symptoms and complexity of patient or family/whānau interpersonal dynamics. This theme specifically encapsulates the influence of distress and denial, family/whānau conflict and symptom control in end-of-life care.
“His partner appeared to have been displeased by previous care in the hospital prior to this admission which I felt made things difficult for them.” – P11
Participants explained that distress and denial could occur in patients, family/whānau and staff. Participants described how dealing with their own distress could be improved if there was more clinical support provided in difficult situations, and if resource was allocated so that they could better care for family/whānau in a busy department.
Participants also described that their job became more complex when family/whānau dynamics resulted in conflict within the clinical space in the negotiation of end-of-life care. Participants noted that the situation could escalate if the conflict was not resolved around the time of death. Conflict events created environments which were difficult for participants to navigate without appropriate system support.
“[It’s] challenging family to talk things through with as they struggled with her illness and deterioration.” – P12
Participants saw symptom control as an important success factor for a patient’s care.
“Symptom control was not dealt within a time that was appropriate to the symptoms that arose and that were reported to medical team.” – P13
Discussion
This is the first study in New Zealand to explore staff views of what contributes to quality of dying. This study aimed to assess the feasibility and acceptability of such a survey, and to obtain their perspectives of what contributes to the quality of patient and family/whānau experiences of dying and death in an acute hospital setting. A mixed method approach has enabled a richness of detail to the dataset, allowing key themes to be identified.
Obtaining staff feedback via survey was feasible and effective. Not only were staff willing to give their feedback, but the information provided was considerable. The survey allowed staff from diverse areas of the hospital an anonymous outlet for expressing concerns, and an option to request more support.
Themes emerging from this study are similar to those previously described in the literature, suggesting the survey is drawing out appropriate information from staff. A 2014 literature review focusing on nurse’s experiences of providing end-of-life care in acute hospital settings found 16 studies, using a mixture of quantitative and qualitative methods.[[12]] Themes resonated strongly through all studies, the issues around culture of the organisation being paramount, as well as difficulties around diagnosing dying, communication/collaboration and lack of time or privacy. A further study by Reid et al. of multidisciplinary focus groups found that these themes encompassed the wider healthcare team.[[13]]
Assessing quality of dying and death is not straightforward and there is no consensus in the literature as to the best tools to use. A strength of this study is that it was developed in New Zealand for a New Zealand demographic. Previous instruments have been developed in the United States of America, Canada, Taiwan and Japan.[[6]] Most quality of dying and death instruments measure symptom control on a Likert scale, with little qualitative data reported. One of the most robust and widely used, the Quality of Dying and Death (QODD) instrument, is based on quantitative data only.[[1,6]] A detailed evaluation of the quality of a death can be made by auditing the clinical record in retrospect, looking for evidence that aspects of care known to enhance quality at the end-of-life were provided.[[10]] Opinions from family/whānau members and/or healthcare professionals (as the person’s proxy) are also useful. Each of these has a role to play in providing a comprehensive view of the performance of the organisation as a whole.
As this survey was voluntary, uptake was not universal. The number of survey requests sent was not recorded, so a response rate cannot be provided. Changes were made to the survey after a second pilot, with addition of a comments section to address family/whānau concerns. This limited data available for qualitative analysis. In addition, this survey did not include surgical sub-specialities, aside from General Surgery, or the Intensive Care Unit (ICU). This survey did not include paediatric wards, but some paediatric patients were captured through ED. Whilst retrospective, since responses were collected within two working days of the death, memories were still fresh.
This study has two main implications. Firstly, it provides an insight to a New Zealand specific population. This will enable improved care of both patients and family/whānau during the dying process and after death. Secondly, this survey allowed staff an anonymous avenue for reflection, without repercussion. This is important as it allows staff to process and reflect on their own and their teams practice around dying and death.
Conclusion
A survey of staff could be used routinely in acute hospitals as part of a suite of tools to provide a holistic view of dying and death across the organisation. It would complement other methods such as retrospective audits and family/whānau interviews/questionnaires. Outcomes may inform policy development and quality initiatives, informing service leads about areas requiring attention and highlighting individual staff members who might benefit from additional training and support.
View Appendix 1.
Summary
Abstract
Aim
To understand what healthcare staff perceive contributes to the quality of patient and family/whānau experiences of dying and death on a hospital inpatient ward.
Method
A survey was created, piloted and sent to all staff members who had cared for a deceased patient within two working days of their death, at Christchurch Hospital (CH), New Zealand. The survey comprised questions evaluating whether the patients physical, emotional, social or family/whānau needs were met, using both a Likert scale and free-text options. The survey was sent over a three-month period in 2016/2017.
Results
A total of 169 staff responded to the deaths of 51 patients. The majority (71.3%) of staff agreed that “end-of-life care was of a high standard”, with the physical symptoms domain holding the highest score for both agreement (68%) and disagreement (13%) that “physical symptoms were well managed”. Qualitative analysis of free-text responses revealed three themes: coordinated care (service delivery, complex case or communication needs, teamwork); culture of practice (dignity, trust, respect and relationships); and complexity of care (encompassing complex physical symptoms or patient or family/whānau interpersonal dynamics).
Conclusion
Evaluation of quality of death in hospitals can be enhanced by routine use of surveys of staff who cared for the deceased person. Such surveys could comprise part of a suite of tools to provide a holistic view of dying and death, complementing methods such as retrospective audits and family/whānau interviews.
Author Information
Acknowledgements
Correspondence
Correspondence Email
Competing Interests
1) Gutiérrez Sánchez D, Pérez Cruzado D, Cuesta-Vargas A. The quality of dying and death measurement instruments: A systematic psychometric review. J Adv Nurs. 2018 Apr 19;74(8):1803-1818.
2) Miyajima K, Fujisawa D, Yoshimura K, et al. Association between quality of end-of-life care and possible complicated grief among bereaved family members. J Palliat Med. 2014 Sep;17(9):1025-31.
3) Patrick DL, Curtis JR, Engelberg RA, et al. Measuring and improving the quality of dying and death. Ann Intern Med. 2003 Sep 2;139(5 Pt 2):410-5.
4) Gerritsen RT, Koopmans M, Hofhuis JG, et al. Comparing Quality of Dying and Death Perceived by Family Members and Nurses for Patients Dying in US and Dutch ICUs. Chest. 2017 Feb;151(2):298-307.
5) Meier EA, Gallegos JV, Thomas LP, et al. Defining a good death (successful dying): literature review and a call for research and public dialogue. Am J Geriatr Psychiatry. 2016 Apr;24(4):261-71.
6) Hales S, Zimmermann C, Rodin G. Review: the quality of dying and death: a systematic review of measures. Palliat Med. 2010 Mar;24:127-44.
7) Patrick DL, Engelberg RA, Curtis JR. Evaluating the quality of dying and death. J Pain Symptom Manage. 2001 Sep;22(3):717-26.
8) Hales S, Zimmermann C, Rodin G. The quality of dying and death. Arch Intern Med. 2008 May 12;168(9):912-8.
9) Hales S, Chiu A, Husain A, et al. The quality of dying and death in cancer and its relationship to palliative care and place of death. J Pain Symptom Manage. 2014 Nov;48(5):839-51.
10) Whitehead C, Wiseman R, Grundy K. Retrospective audit of deaths in Canterbury District Health Board. New Zealand Medical Student Journal. 2018;27:21-27.
11) Saldana JM. The coding manual for qualitative researchers. 3rd ed. London, England: SAGE Publications; 2015.
12) Gagnon J and Duggleby W. The provision of end-of-life care by medical-surgical nurses working in acute care: A literature review. Palliat Support Care. 2014 Oct;12(5):393-408.
13) Reid C, Gibbins J, Bloor S et al. Healthcare professionals’ perspectives on delivering end-of-life care within acute hospital trusts: a qualitative study. BMJ Support Palliat Care. 2015 Dec;5(5):490-495.
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Given the universality of death, examining the quality of clinical care around dying should be part of routine healthcare.[[1]] A poor quality experience can lead to a more complex grieving process for family/whānau and distress or burnout for staff. When the death is anticipated, family/whānau distress can be reduced by allowing the patient, the whānau and the healthcare team to understand and prepare for what is happening.[[2]]
There is no agreed consensus on what constitutes a “good death” and how to define quality with respect to the dying process. Quality measures must take account of the process of dying as well as the death as an acute event.[[1]] Developing international standards is intrinsically difficult as dying is a dynamic process, deeply personal to the individual.[[3]] Often, a proxy is required to speak for the deceased, such as a family member or health professional.[[1,4–6]] These opinions vary greatly depending on their relationship to the patient and their own personal values.[[1,3,6,7]] The retrospective nature of exploring a person’s death also makes defining exact outcomes subject to retrospective bias.[[7,8]]
Most tools evaluating dying and death are based on a mixture of literature reviews and expert opinion, including both qualitative and quantitative research.[[6]] Scales are based on differing frameworks and definitions, developed in different cultural settings and most use quantitative measures such as Likert scales.[[1,5]] Reliability and validity has not been robustly tested for many of the measures.[[1,6]] Meier et al., in their 2016 literature review of “defining a good death”, found that physical symptoms are well studied in comparison to other aspects of the dying process.[[5]] They suggest that future work should include a wider variety of ages and cultures.[[5]] Furthermore, it is acknowledged that any instrument designed to measure dying and death must encompass physical, psychological, cultural, and spiritual aspects.[[7,9]]
A previously published quality of dying audit tool was created as part of a comprehensive framework of clinical audit in Canterbury District Health Board (CDHB).[[10]] CDHB services a 0.5 million population and has a single tertiary centre, Christchurch Hospital (CH), which is the largest hospital in the South Island of New Zealand. CH has an 800 bed capacity, with over 1,000 inpatient deaths per year.
The quality of dying audit tool is used on a regular basis across the CDHB, and involves a detailed review of clinical documentation looking for factors known to contribute to quality patient and family/whānau experiences of dying and death. It focuses specifically on holistic, cultural and spiritual domains. As an extension to the chart audit, staff directly involved in caring for the person were surveyed regarding their own perceptions and experiences of that death and the dying process that preceded it.
The purpose of this study was to explore whether a survey of this type was feasible and acceptable to staff, and to understand what they perceive contributes to the quality of patient and family/whānau experiences of dying and death in an acute hospital setting.
Method
In 2016, the Canterbury Regional Blood and Cancer Service at Christchurch Hospital (CH) developed a survey with the aim of retrospectively capturing staff members’ views of recent deaths of patients under their care.
This survey was piloted with staff members who cared for 13 patients who died in the Oncology ward in mid-2016. A second round of pilot testing followed in December 2016 on a further nine patients, to test the survey distribution and operationalisation processes. Deaths of inpatients in the oncology, respiratory and haematology departments were identified from daily mortuary records. The survey was sent via a web link to all staff in the respective departments within two working days of the death, inviting those who had cared for the patient prior to death to respond. The survey was hosted on RedCap (RedCap Consortium, Vanderbilt) and filled out anonymously, other than identifying their role in the patients care. There were no patient identifiers contained in the email to preserve confidentiality, but upon completing the survey, staff were asked to enter the National Health Index (NHI) number and name of the patient, so that responses for the same patient could be collated.
Feedback received from this round of pilot testing refined the delivery method, such that individual staff involved in the care of the patient in the last 48 hours of life were identified from the clinical record and survey web links subsequently targeted to these individuals only. In addition, as a result of this round of pilot testing, the two questions around family/whānau support needs were merged (Items 8 and 9, Appendix 1). A separate free-text section was added which allowed staff to comment on the needs of the family/whānau. An option for staff to request further support was also added. Appendix 1 shows the final version of the survey, indicating where changes were made after review.
The survey was implemented across selected departments in CH (Oncology, Bone Marrow Transplant Unit, Respiratory, Emergency Department (ED) and General Surgery) between November and 2016 and January 2017. A single researcher (CW) was responsible for identifying deaths on a daily basis and coordinating emails to staff.
Quantitative analysis included descriptive statistics. Answers that were ranked, “strongly agree” and “agree” were added together, as were “strongly disagree” and “disagree”.
Qualitative analysis was used to order data extracted from the free-text questions (10, 11 and 12). Inductive thematic analysis was determined as appropriate to accurately give voice to participants’ commentary. Four members of the research team (CW, RW, KG and SP) agreed the design and development of two cycles of coding.[[11]] The first cycle of coding involved descriptive analysis that examined responses to each free-text question and identified similarities and differences between participants’ perspectives and experiences on aspects of care. The second cycle of coding involved two further review processes, firstly pattern coding was utilised to collate and triangulate overall responses where the content being discussed was similar. Descriptive coding was then utilised to explore the depth of content areas being discussed by participants. The inclusion criteria for each code, drawn from the descriptive, and category, drawn from pattern coding, was discussed and defined by the research team during data analysis. The research team then further identified which categories articulated the same phenomenon and grouped these as themes. Two of the coders have extensive experience in palliative care as physicians (RW, KG), three of the coders have qualitative expertise (RW, KG and SP), and one of the coders was being mentored in the qualitative methodology and was a medical student (CW).
This study was out of Health & Disability Ethics Committee scope of review. Internal ethics approval was granted by the CDHB Oncology Department Low Risk Ethics Board.
Results
Quantitative analysis
A total of 169 staff responded to the deaths of 51 patients. The majority of survey respondents were nurses (50%), followed by doctors (39%). A small percentage of staff identified themselves as allied health professionals or other (8% and 3%, respectively).
Overall, 71.3% of the staff surveyed agreed or strongly agreed that “end-of-life care was of a high standard”. The highest scoring domain was for physical symptoms, with 68% of respondents agreeing or strongly agreeing that physical symptoms were well managed. The emotional and support/social needs domains recorded lower scores, at 65% and 50% respectively (see Table 1). Due to the changes made after the second pilot testing, the totals seen in Table 1 for each item is not constant, and represents the total number of answers for that item. The most disagreed with item was that the “patient’s physical symptoms were well managed” at 13%, followed by the “patient’s family/whānau emotional needs were met” at 12.2%.
View Table 1.
There were three free-text questions that staff could choose to answer. The overall response rate of answering at least one free-text question was 86.4%. Of those that only answered one free-text question, 80% answered the “what aspects of the end-of-life care went well” text option. The response rate of each free-text box ranged from 69.2% (“what aspects of the end-of-life care could be improved”) to 81.7% (“what aspects of the end-of-life care went well”). Of note, the free-text box “comments on family/whānau emotional/support/social needs met” was added after the second round of testing, and there was a 74.5% response rate for this option.
The last item on the survey allowed staff to request extra feedback in more detail if they required. Thirteen staff requested extra feedback. An email was sent to these staff offering additional support, but no staff took up the offer.
Qualitative analysis
Three themes were identified through the coding processes; coordinated care, culture of practice and complexity of care.
1. Coordinated care
Coordinated care encompasses levels of service delivery seen by staff as pivotal to support both the patient and their family/whānau through their last days of life. Coordinated care was inclusive of complex case needs, communication of a diagnosis of dying, supporting family/whānau at the point of death and the importance of teamwork.
Complex case needs describes the balance between staff providing support, whilst allowing the patient and family/whānau to feel empowered to make decisions and be involved in care. This was challenging when patients presented late or in a rapidly changing situation. Participants acknowledged issues such as lack of cohesion amongst clinical teams, declining services such as specialist palliative care and reduced resources on weekends. For example:
“It was extremely difficult to communicate to the family, as many didn't speak English, and only one member had a fluency in English. It was very hard to explain why we were doing things, access to the patient was often limited by family (having to translate) which made it hard to assess the physical needs of the patient. Some of the nursing team were reluctant to observe the cultural and religious requirements the family had surrounding death.” – P1
Communication of the diagnosis of dying was viewed as being pivotal to supporting the patient and their family/whānau. This included ensuring the trajectory of anticipated death was clear and appropriate supports were put in place to allow the patient and their family/whānau to make decisions. Participants were concerned that when an uncertain or unstable trajectory was identified, this was more likely to impact on the experience of dying. Conversely, participants also identified the need to ensure that for patients with a longer dying trajectory, the dying process was still discussed.
“The death was quick and sudden even though expected, and although family were not emotionally prepared they had been supported and informed that he was dying.” – P2
Poor communication fostered mistrust, which included patients not understanding their prognosis and condition severity, an inability to navigate language barriers, cultural differences and inability to comprehend information. The opposite was also the case; good communication clearly helped family/whānau navigate the dying process more easily.
“A family meeting was held where the patient and their family were made well aware that the patient was in his final days. There was a clear plan of which family member to call if the patient deteriorated, which was done.” – P3
Participants regarded teamwork as an important aspect of a good death. As multiple staff were involved in the care of a patient, it was important that teams had good cohesion and were able to work together, even when language and communication issues were present.
Culture of practice
The culture of practice encapsulates the concepts of dignity, respect and trust in the relationship between staff and a patient, i.e., values that shape the culture of practice. This culture of practice was inclusive of: after death and bereavement care, spiritual and cultural needs/practices, engagement with the family/whānau and building a relationship with patients and family/whānau which enabled trust, dignity and respect.
Participants identified that when cultural needs were respected, it often required support and resource, and not all were easy to access due to resource constraints:
“It was unfortunate that there are limited community resources catering for Muslim needs as X’s situation was very unique…” – P5
Dignity and respect of the patient and their family/whānau was a critical element. Participants described various roles that demonstrated how they enacted dignity and respect. Examples included the opportunity to assist a patient to get married while in hospital, through to care of the patient’s body after death.
“X’s partner was able to sleep in an adjoining bed which we positioned so that they could cuddle together.” – P6
Participants discussed the challenges in identifying spiritual needs of a patient, and therefore the difficulty in knowing whether these needs were met. Participants shared spiritual wellbeing signposts, such as words like “blessed” within their clinical encounters or a feeling that the family were prepared for death. A frequent area of concern was lack of privacy for the patient and family/whānau. The lack of appropriate facilities within their work places meant family/whānau were left to grieve in hallways or public spaces.
“Facilities are inadequate to support families in the ward environment. It is always sad to see families needing to grieve in public places.” – P8
Participants identified that family/whānau engagement and involvement was a marker of a positive culture of practice. Participants also noted a less ideal culture of practice when patients were unable to communicate, had no family/whānau to guide them, or took a long time to build trust with staff.
“Karakia, himene performed at the request of patient who was fully comprehensive & focussed… last wishes of X were the responsibility of the daughters with the manaaki, tautoko, awhi of all those present and administered by X’s brother… X’s immediate whānau were able to stay overnight with X if they wished…” – P10
3. Complexity of care
This theme consolidates content which describes both the complexity of physical symptoms and complexity of patient or family/whānau interpersonal dynamics. This theme specifically encapsulates the influence of distress and denial, family/whānau conflict and symptom control in end-of-life care.
“His partner appeared to have been displeased by previous care in the hospital prior to this admission which I felt made things difficult for them.” – P11
Participants explained that distress and denial could occur in patients, family/whānau and staff. Participants described how dealing with their own distress could be improved if there was more clinical support provided in difficult situations, and if resource was allocated so that they could better care for family/whānau in a busy department.
Participants also described that their job became more complex when family/whānau dynamics resulted in conflict within the clinical space in the negotiation of end-of-life care. Participants noted that the situation could escalate if the conflict was not resolved around the time of death. Conflict events created environments which were difficult for participants to navigate without appropriate system support.
“[It’s] challenging family to talk things through with as they struggled with her illness and deterioration.” – P12
Participants saw symptom control as an important success factor for a patient’s care.
“Symptom control was not dealt within a time that was appropriate to the symptoms that arose and that were reported to medical team.” – P13
Discussion
This is the first study in New Zealand to explore staff views of what contributes to quality of dying. This study aimed to assess the feasibility and acceptability of such a survey, and to obtain their perspectives of what contributes to the quality of patient and family/whānau experiences of dying and death in an acute hospital setting. A mixed method approach has enabled a richness of detail to the dataset, allowing key themes to be identified.
Obtaining staff feedback via survey was feasible and effective. Not only were staff willing to give their feedback, but the information provided was considerable. The survey allowed staff from diverse areas of the hospital an anonymous outlet for expressing concerns, and an option to request more support.
Themes emerging from this study are similar to those previously described in the literature, suggesting the survey is drawing out appropriate information from staff. A 2014 literature review focusing on nurse’s experiences of providing end-of-life care in acute hospital settings found 16 studies, using a mixture of quantitative and qualitative methods.[[12]] Themes resonated strongly through all studies, the issues around culture of the organisation being paramount, as well as difficulties around diagnosing dying, communication/collaboration and lack of time or privacy. A further study by Reid et al. of multidisciplinary focus groups found that these themes encompassed the wider healthcare team.[[13]]
Assessing quality of dying and death is not straightforward and there is no consensus in the literature as to the best tools to use. A strength of this study is that it was developed in New Zealand for a New Zealand demographic. Previous instruments have been developed in the United States of America, Canada, Taiwan and Japan.[[6]] Most quality of dying and death instruments measure symptom control on a Likert scale, with little qualitative data reported. One of the most robust and widely used, the Quality of Dying and Death (QODD) instrument, is based on quantitative data only.[[1,6]] A detailed evaluation of the quality of a death can be made by auditing the clinical record in retrospect, looking for evidence that aspects of care known to enhance quality at the end-of-life were provided.[[10]] Opinions from family/whānau members and/or healthcare professionals (as the person’s proxy) are also useful. Each of these has a role to play in providing a comprehensive view of the performance of the organisation as a whole.
As this survey was voluntary, uptake was not universal. The number of survey requests sent was not recorded, so a response rate cannot be provided. Changes were made to the survey after a second pilot, with addition of a comments section to address family/whānau concerns. This limited data available for qualitative analysis. In addition, this survey did not include surgical sub-specialities, aside from General Surgery, or the Intensive Care Unit (ICU). This survey did not include paediatric wards, but some paediatric patients were captured through ED. Whilst retrospective, since responses were collected within two working days of the death, memories were still fresh.
This study has two main implications. Firstly, it provides an insight to a New Zealand specific population. This will enable improved care of both patients and family/whānau during the dying process and after death. Secondly, this survey allowed staff an anonymous avenue for reflection, without repercussion. This is important as it allows staff to process and reflect on their own and their teams practice around dying and death.
Conclusion
A survey of staff could be used routinely in acute hospitals as part of a suite of tools to provide a holistic view of dying and death across the organisation. It would complement other methods such as retrospective audits and family/whānau interviews/questionnaires. Outcomes may inform policy development and quality initiatives, informing service leads about areas requiring attention and highlighting individual staff members who might benefit from additional training and support.
View Appendix 1.
Summary
Abstract
Aim
To understand what healthcare staff perceive contributes to the quality of patient and family/whānau experiences of dying and death on a hospital inpatient ward.
Method
A survey was created, piloted and sent to all staff members who had cared for a deceased patient within two working days of their death, at Christchurch Hospital (CH), New Zealand. The survey comprised questions evaluating whether the patients physical, emotional, social or family/whānau needs were met, using both a Likert scale and free-text options. The survey was sent over a three-month period in 2016/2017.
Results
A total of 169 staff responded to the deaths of 51 patients. The majority (71.3%) of staff agreed that “end-of-life care was of a high standard”, with the physical symptoms domain holding the highest score for both agreement (68%) and disagreement (13%) that “physical symptoms were well managed”. Qualitative analysis of free-text responses revealed three themes: coordinated care (service delivery, complex case or communication needs, teamwork); culture of practice (dignity, trust, respect and relationships); and complexity of care (encompassing complex physical symptoms or patient or family/whānau interpersonal dynamics).
Conclusion
Evaluation of quality of death in hospitals can be enhanced by routine use of surveys of staff who cared for the deceased person. Such surveys could comprise part of a suite of tools to provide a holistic view of dying and death, complementing methods such as retrospective audits and family/whānau interviews.
Author Information
Acknowledgements
Correspondence
Correspondence Email
Competing Interests
1) Gutiérrez Sánchez D, Pérez Cruzado D, Cuesta-Vargas A. The quality of dying and death measurement instruments: A systematic psychometric review. J Adv Nurs. 2018 Apr 19;74(8):1803-1818.
2) Miyajima K, Fujisawa D, Yoshimura K, et al. Association between quality of end-of-life care and possible complicated grief among bereaved family members. J Palliat Med. 2014 Sep;17(9):1025-31.
3) Patrick DL, Curtis JR, Engelberg RA, et al. Measuring and improving the quality of dying and death. Ann Intern Med. 2003 Sep 2;139(5 Pt 2):410-5.
4) Gerritsen RT, Koopmans M, Hofhuis JG, et al. Comparing Quality of Dying and Death Perceived by Family Members and Nurses for Patients Dying in US and Dutch ICUs. Chest. 2017 Feb;151(2):298-307.
5) Meier EA, Gallegos JV, Thomas LP, et al. Defining a good death (successful dying): literature review and a call for research and public dialogue. Am J Geriatr Psychiatry. 2016 Apr;24(4):261-71.
6) Hales S, Zimmermann C, Rodin G. Review: the quality of dying and death: a systematic review of measures. Palliat Med. 2010 Mar;24:127-44.
7) Patrick DL, Engelberg RA, Curtis JR. Evaluating the quality of dying and death. J Pain Symptom Manage. 2001 Sep;22(3):717-26.
8) Hales S, Zimmermann C, Rodin G. The quality of dying and death. Arch Intern Med. 2008 May 12;168(9):912-8.
9) Hales S, Chiu A, Husain A, et al. The quality of dying and death in cancer and its relationship to palliative care and place of death. J Pain Symptom Manage. 2014 Nov;48(5):839-51.
10) Whitehead C, Wiseman R, Grundy K. Retrospective audit of deaths in Canterbury District Health Board. New Zealand Medical Student Journal. 2018;27:21-27.
11) Saldana JM. The coding manual for qualitative researchers. 3rd ed. London, England: SAGE Publications; 2015.
12) Gagnon J and Duggleby W. The provision of end-of-life care by medical-surgical nurses working in acute care: A literature review. Palliat Support Care. 2014 Oct;12(5):393-408.
13) Reid C, Gibbins J, Bloor S et al. Healthcare professionals’ perspectives on delivering end-of-life care within acute hospital trusts: a qualitative study. BMJ Support Palliat Care. 2015 Dec;5(5):490-495.
For the PDF of this article,
contact nzmj@nzma.org.nz
View Article PDF
Given the universality of death, examining the quality of clinical care around dying should be part of routine healthcare.[[1]] A poor quality experience can lead to a more complex grieving process for family/whānau and distress or burnout for staff. When the death is anticipated, family/whānau distress can be reduced by allowing the patient, the whānau and the healthcare team to understand and prepare for what is happening.[[2]]
There is no agreed consensus on what constitutes a “good death” and how to define quality with respect to the dying process. Quality measures must take account of the process of dying as well as the death as an acute event.[[1]] Developing international standards is intrinsically difficult as dying is a dynamic process, deeply personal to the individual.[[3]] Often, a proxy is required to speak for the deceased, such as a family member or health professional.[[1,4–6]] These opinions vary greatly depending on their relationship to the patient and their own personal values.[[1,3,6,7]] The retrospective nature of exploring a person’s death also makes defining exact outcomes subject to retrospective bias.[[7,8]]
Most tools evaluating dying and death are based on a mixture of literature reviews and expert opinion, including both qualitative and quantitative research.[[6]] Scales are based on differing frameworks and definitions, developed in different cultural settings and most use quantitative measures such as Likert scales.[[1,5]] Reliability and validity has not been robustly tested for many of the measures.[[1,6]] Meier et al., in their 2016 literature review of “defining a good death”, found that physical symptoms are well studied in comparison to other aspects of the dying process.[[5]] They suggest that future work should include a wider variety of ages and cultures.[[5]] Furthermore, it is acknowledged that any instrument designed to measure dying and death must encompass physical, psychological, cultural, and spiritual aspects.[[7,9]]
A previously published quality of dying audit tool was created as part of a comprehensive framework of clinical audit in Canterbury District Health Board (CDHB).[[10]] CDHB services a 0.5 million population and has a single tertiary centre, Christchurch Hospital (CH), which is the largest hospital in the South Island of New Zealand. CH has an 800 bed capacity, with over 1,000 inpatient deaths per year.
The quality of dying audit tool is used on a regular basis across the CDHB, and involves a detailed review of clinical documentation looking for factors known to contribute to quality patient and family/whānau experiences of dying and death. It focuses specifically on holistic, cultural and spiritual domains. As an extension to the chart audit, staff directly involved in caring for the person were surveyed regarding their own perceptions and experiences of that death and the dying process that preceded it.
The purpose of this study was to explore whether a survey of this type was feasible and acceptable to staff, and to understand what they perceive contributes to the quality of patient and family/whānau experiences of dying and death in an acute hospital setting.
Method
In 2016, the Canterbury Regional Blood and Cancer Service at Christchurch Hospital (CH) developed a survey with the aim of retrospectively capturing staff members’ views of recent deaths of patients under their care.
This survey was piloted with staff members who cared for 13 patients who died in the Oncology ward in mid-2016. A second round of pilot testing followed in December 2016 on a further nine patients, to test the survey distribution and operationalisation processes. Deaths of inpatients in the oncology, respiratory and haematology departments were identified from daily mortuary records. The survey was sent via a web link to all staff in the respective departments within two working days of the death, inviting those who had cared for the patient prior to death to respond. The survey was hosted on RedCap (RedCap Consortium, Vanderbilt) and filled out anonymously, other than identifying their role in the patients care. There were no patient identifiers contained in the email to preserve confidentiality, but upon completing the survey, staff were asked to enter the National Health Index (NHI) number and name of the patient, so that responses for the same patient could be collated.
Feedback received from this round of pilot testing refined the delivery method, such that individual staff involved in the care of the patient in the last 48 hours of life were identified from the clinical record and survey web links subsequently targeted to these individuals only. In addition, as a result of this round of pilot testing, the two questions around family/whānau support needs were merged (Items 8 and 9, Appendix 1). A separate free-text section was added which allowed staff to comment on the needs of the family/whānau. An option for staff to request further support was also added. Appendix 1 shows the final version of the survey, indicating where changes were made after review.
The survey was implemented across selected departments in CH (Oncology, Bone Marrow Transplant Unit, Respiratory, Emergency Department (ED) and General Surgery) between November and 2016 and January 2017. A single researcher (CW) was responsible for identifying deaths on a daily basis and coordinating emails to staff.
Quantitative analysis included descriptive statistics. Answers that were ranked, “strongly agree” and “agree” were added together, as were “strongly disagree” and “disagree”.
Qualitative analysis was used to order data extracted from the free-text questions (10, 11 and 12). Inductive thematic analysis was determined as appropriate to accurately give voice to participants’ commentary. Four members of the research team (CW, RW, KG and SP) agreed the design and development of two cycles of coding.[[11]] The first cycle of coding involved descriptive analysis that examined responses to each free-text question and identified similarities and differences between participants’ perspectives and experiences on aspects of care. The second cycle of coding involved two further review processes, firstly pattern coding was utilised to collate and triangulate overall responses where the content being discussed was similar. Descriptive coding was then utilised to explore the depth of content areas being discussed by participants. The inclusion criteria for each code, drawn from the descriptive, and category, drawn from pattern coding, was discussed and defined by the research team during data analysis. The research team then further identified which categories articulated the same phenomenon and grouped these as themes. Two of the coders have extensive experience in palliative care as physicians (RW, KG), three of the coders have qualitative expertise (RW, KG and SP), and one of the coders was being mentored in the qualitative methodology and was a medical student (CW).
This study was out of Health & Disability Ethics Committee scope of review. Internal ethics approval was granted by the CDHB Oncology Department Low Risk Ethics Board.
Results
Quantitative analysis
A total of 169 staff responded to the deaths of 51 patients. The majority of survey respondents were nurses (50%), followed by doctors (39%). A small percentage of staff identified themselves as allied health professionals or other (8% and 3%, respectively).
Overall, 71.3% of the staff surveyed agreed or strongly agreed that “end-of-life care was of a high standard”. The highest scoring domain was for physical symptoms, with 68% of respondents agreeing or strongly agreeing that physical symptoms were well managed. The emotional and support/social needs domains recorded lower scores, at 65% and 50% respectively (see Table 1). Due to the changes made after the second pilot testing, the totals seen in Table 1 for each item is not constant, and represents the total number of answers for that item. The most disagreed with item was that the “patient’s physical symptoms were well managed” at 13%, followed by the “patient’s family/whānau emotional needs were met” at 12.2%.
View Table 1.
There were three free-text questions that staff could choose to answer. The overall response rate of answering at least one free-text question was 86.4%. Of those that only answered one free-text question, 80% answered the “what aspects of the end-of-life care went well” text option. The response rate of each free-text box ranged from 69.2% (“what aspects of the end-of-life care could be improved”) to 81.7% (“what aspects of the end-of-life care went well”). Of note, the free-text box “comments on family/whānau emotional/support/social needs met” was added after the second round of testing, and there was a 74.5% response rate for this option.
The last item on the survey allowed staff to request extra feedback in more detail if they required. Thirteen staff requested extra feedback. An email was sent to these staff offering additional support, but no staff took up the offer.
Qualitative analysis
Three themes were identified through the coding processes; coordinated care, culture of practice and complexity of care.
1. Coordinated care
Coordinated care encompasses levels of service delivery seen by staff as pivotal to support both the patient and their family/whānau through their last days of life. Coordinated care was inclusive of complex case needs, communication of a diagnosis of dying, supporting family/whānau at the point of death and the importance of teamwork.
Complex case needs describes the balance between staff providing support, whilst allowing the patient and family/whānau to feel empowered to make decisions and be involved in care. This was challenging when patients presented late or in a rapidly changing situation. Participants acknowledged issues such as lack of cohesion amongst clinical teams, declining services such as specialist palliative care and reduced resources on weekends. For example:
“It was extremely difficult to communicate to the family, as many didn't speak English, and only one member had a fluency in English. It was very hard to explain why we were doing things, access to the patient was often limited by family (having to translate) which made it hard to assess the physical needs of the patient. Some of the nursing team were reluctant to observe the cultural and religious requirements the family had surrounding death.” – P1
Communication of the diagnosis of dying was viewed as being pivotal to supporting the patient and their family/whānau. This included ensuring the trajectory of anticipated death was clear and appropriate supports were put in place to allow the patient and their family/whānau to make decisions. Participants were concerned that when an uncertain or unstable trajectory was identified, this was more likely to impact on the experience of dying. Conversely, participants also identified the need to ensure that for patients with a longer dying trajectory, the dying process was still discussed.
“The death was quick and sudden even though expected, and although family were not emotionally prepared they had been supported and informed that he was dying.” – P2
Poor communication fostered mistrust, which included patients not understanding their prognosis and condition severity, an inability to navigate language barriers, cultural differences and inability to comprehend information. The opposite was also the case; good communication clearly helped family/whānau navigate the dying process more easily.
“A family meeting was held where the patient and their family were made well aware that the patient was in his final days. There was a clear plan of which family member to call if the patient deteriorated, which was done.” – P3
Participants regarded teamwork as an important aspect of a good death. As multiple staff were involved in the care of a patient, it was important that teams had good cohesion and were able to work together, even when language and communication issues were present.
Culture of practice
The culture of practice encapsulates the concepts of dignity, respect and trust in the relationship between staff and a patient, i.e., values that shape the culture of practice. This culture of practice was inclusive of: after death and bereavement care, spiritual and cultural needs/practices, engagement with the family/whānau and building a relationship with patients and family/whānau which enabled trust, dignity and respect.
Participants identified that when cultural needs were respected, it often required support and resource, and not all were easy to access due to resource constraints:
“It was unfortunate that there are limited community resources catering for Muslim needs as X’s situation was very unique…” – P5
Dignity and respect of the patient and their family/whānau was a critical element. Participants described various roles that demonstrated how they enacted dignity and respect. Examples included the opportunity to assist a patient to get married while in hospital, through to care of the patient’s body after death.
“X’s partner was able to sleep in an adjoining bed which we positioned so that they could cuddle together.” – P6
Participants discussed the challenges in identifying spiritual needs of a patient, and therefore the difficulty in knowing whether these needs were met. Participants shared spiritual wellbeing signposts, such as words like “blessed” within their clinical encounters or a feeling that the family were prepared for death. A frequent area of concern was lack of privacy for the patient and family/whānau. The lack of appropriate facilities within their work places meant family/whānau were left to grieve in hallways or public spaces.
“Facilities are inadequate to support families in the ward environment. It is always sad to see families needing to grieve in public places.” – P8
Participants identified that family/whānau engagement and involvement was a marker of a positive culture of practice. Participants also noted a less ideal culture of practice when patients were unable to communicate, had no family/whānau to guide them, or took a long time to build trust with staff.
“Karakia, himene performed at the request of patient who was fully comprehensive & focussed… last wishes of X were the responsibility of the daughters with the manaaki, tautoko, awhi of all those present and administered by X’s brother… X’s immediate whānau were able to stay overnight with X if they wished…” – P10
3. Complexity of care
This theme consolidates content which describes both the complexity of physical symptoms and complexity of patient or family/whānau interpersonal dynamics. This theme specifically encapsulates the influence of distress and denial, family/whānau conflict and symptom control in end-of-life care.
“His partner appeared to have been displeased by previous care in the hospital prior to this admission which I felt made things difficult for them.” – P11
Participants explained that distress and denial could occur in patients, family/whānau and staff. Participants described how dealing with their own distress could be improved if there was more clinical support provided in difficult situations, and if resource was allocated so that they could better care for family/whānau in a busy department.
Participants also described that their job became more complex when family/whānau dynamics resulted in conflict within the clinical space in the negotiation of end-of-life care. Participants noted that the situation could escalate if the conflict was not resolved around the time of death. Conflict events created environments which were difficult for participants to navigate without appropriate system support.
“[It’s] challenging family to talk things through with as they struggled with her illness and deterioration.” – P12
Participants saw symptom control as an important success factor for a patient’s care.
“Symptom control was not dealt within a time that was appropriate to the symptoms that arose and that were reported to medical team.” – P13
Discussion
This is the first study in New Zealand to explore staff views of what contributes to quality of dying. This study aimed to assess the feasibility and acceptability of such a survey, and to obtain their perspectives of what contributes to the quality of patient and family/whānau experiences of dying and death in an acute hospital setting. A mixed method approach has enabled a richness of detail to the dataset, allowing key themes to be identified.
Obtaining staff feedback via survey was feasible and effective. Not only were staff willing to give their feedback, but the information provided was considerable. The survey allowed staff from diverse areas of the hospital an anonymous outlet for expressing concerns, and an option to request more support.
Themes emerging from this study are similar to those previously described in the literature, suggesting the survey is drawing out appropriate information from staff. A 2014 literature review focusing on nurse’s experiences of providing end-of-life care in acute hospital settings found 16 studies, using a mixture of quantitative and qualitative methods.[[12]] Themes resonated strongly through all studies, the issues around culture of the organisation being paramount, as well as difficulties around diagnosing dying, communication/collaboration and lack of time or privacy. A further study by Reid et al. of multidisciplinary focus groups found that these themes encompassed the wider healthcare team.[[13]]
Assessing quality of dying and death is not straightforward and there is no consensus in the literature as to the best tools to use. A strength of this study is that it was developed in New Zealand for a New Zealand demographic. Previous instruments have been developed in the United States of America, Canada, Taiwan and Japan.[[6]] Most quality of dying and death instruments measure symptom control on a Likert scale, with little qualitative data reported. One of the most robust and widely used, the Quality of Dying and Death (QODD) instrument, is based on quantitative data only.[[1,6]] A detailed evaluation of the quality of a death can be made by auditing the clinical record in retrospect, looking for evidence that aspects of care known to enhance quality at the end-of-life were provided.[[10]] Opinions from family/whānau members and/or healthcare professionals (as the person’s proxy) are also useful. Each of these has a role to play in providing a comprehensive view of the performance of the organisation as a whole.
As this survey was voluntary, uptake was not universal. The number of survey requests sent was not recorded, so a response rate cannot be provided. Changes were made to the survey after a second pilot, with addition of a comments section to address family/whānau concerns. This limited data available for qualitative analysis. In addition, this survey did not include surgical sub-specialities, aside from General Surgery, or the Intensive Care Unit (ICU). This survey did not include paediatric wards, but some paediatric patients were captured through ED. Whilst retrospective, since responses were collected within two working days of the death, memories were still fresh.
This study has two main implications. Firstly, it provides an insight to a New Zealand specific population. This will enable improved care of both patients and family/whānau during the dying process and after death. Secondly, this survey allowed staff an anonymous avenue for reflection, without repercussion. This is important as it allows staff to process and reflect on their own and their teams practice around dying and death.
Conclusion
A survey of staff could be used routinely in acute hospitals as part of a suite of tools to provide a holistic view of dying and death across the organisation. It would complement other methods such as retrospective audits and family/whānau interviews/questionnaires. Outcomes may inform policy development and quality initiatives, informing service leads about areas requiring attention and highlighting individual staff members who might benefit from additional training and support.
View Appendix 1.
Summary
Abstract
Aim
To understand what healthcare staff perceive contributes to the quality of patient and family/whānau experiences of dying and death on a hospital inpatient ward.
Method
A survey was created, piloted and sent to all staff members who had cared for a deceased patient within two working days of their death, at Christchurch Hospital (CH), New Zealand. The survey comprised questions evaluating whether the patients physical, emotional, social or family/whānau needs were met, using both a Likert scale and free-text options. The survey was sent over a three-month period in 2016/2017.
Results
A total of 169 staff responded to the deaths of 51 patients. The majority (71.3%) of staff agreed that “end-of-life care was of a high standard”, with the physical symptoms domain holding the highest score for both agreement (68%) and disagreement (13%) that “physical symptoms were well managed”. Qualitative analysis of free-text responses revealed three themes: coordinated care (service delivery, complex case or communication needs, teamwork); culture of practice (dignity, trust, respect and relationships); and complexity of care (encompassing complex physical symptoms or patient or family/whānau interpersonal dynamics).
Conclusion
Evaluation of quality of death in hospitals can be enhanced by routine use of surveys of staff who cared for the deceased person. Such surveys could comprise part of a suite of tools to provide a holistic view of dying and death, complementing methods such as retrospective audits and family/whānau interviews.
Author Information
Acknowledgements
Correspondence
Correspondence Email
Competing Interests
1) Gutiérrez Sánchez D, Pérez Cruzado D, Cuesta-Vargas A. The quality of dying and death measurement instruments: A systematic psychometric review. J Adv Nurs. 2018 Apr 19;74(8):1803-1818.
2) Miyajima K, Fujisawa D, Yoshimura K, et al. Association between quality of end-of-life care and possible complicated grief among bereaved family members. J Palliat Med. 2014 Sep;17(9):1025-31.
3) Patrick DL, Curtis JR, Engelberg RA, et al. Measuring and improving the quality of dying and death. Ann Intern Med. 2003 Sep 2;139(5 Pt 2):410-5.
4) Gerritsen RT, Koopmans M, Hofhuis JG, et al. Comparing Quality of Dying and Death Perceived by Family Members and Nurses for Patients Dying in US and Dutch ICUs. Chest. 2017 Feb;151(2):298-307.
5) Meier EA, Gallegos JV, Thomas LP, et al. Defining a good death (successful dying): literature review and a call for research and public dialogue. Am J Geriatr Psychiatry. 2016 Apr;24(4):261-71.
6) Hales S, Zimmermann C, Rodin G. Review: the quality of dying and death: a systematic review of measures. Palliat Med. 2010 Mar;24:127-44.
7) Patrick DL, Engelberg RA, Curtis JR. Evaluating the quality of dying and death. J Pain Symptom Manage. 2001 Sep;22(3):717-26.
8) Hales S, Zimmermann C, Rodin G. The quality of dying and death. Arch Intern Med. 2008 May 12;168(9):912-8.
9) Hales S, Chiu A, Husain A, et al. The quality of dying and death in cancer and its relationship to palliative care and place of death. J Pain Symptom Manage. 2014 Nov;48(5):839-51.
10) Whitehead C, Wiseman R, Grundy K. Retrospective audit of deaths in Canterbury District Health Board. New Zealand Medical Student Journal. 2018;27:21-27.
11) Saldana JM. The coding manual for qualitative researchers. 3rd ed. London, England: SAGE Publications; 2015.
12) Gagnon J and Duggleby W. The provision of end-of-life care by medical-surgical nurses working in acute care: A literature review. Palliat Support Care. 2014 Oct;12(5):393-408.
13) Reid C, Gibbins J, Bloor S et al. Healthcare professionals’ perspectives on delivering end-of-life care within acute hospital trusts: a qualitative study. BMJ Support Palliat Care. 2015 Dec;5(5):490-495.
Contact diana@nzma.org.nz
for the PDF of this article
View Article PDF
Given the universality of death, examining the quality of clinical care around dying should be part of routine healthcare.[[1]] A poor quality experience can lead to a more complex grieving process for family/whānau and distress or burnout for staff. When the death is anticipated, family/whānau distress can be reduced by allowing the patient, the whānau and the healthcare team to understand and prepare for what is happening.[[2]]
There is no agreed consensus on what constitutes a “good death” and how to define quality with respect to the dying process. Quality measures must take account of the process of dying as well as the death as an acute event.[[1]] Developing international standards is intrinsically difficult as dying is a dynamic process, deeply personal to the individual.[[3]] Often, a proxy is required to speak for the deceased, such as a family member or health professional.[[1,4–6]] These opinions vary greatly depending on their relationship to the patient and their own personal values.[[1,3,6,7]] The retrospective nature of exploring a person’s death also makes defining exact outcomes subject to retrospective bias.[[7,8]]
Most tools evaluating dying and death are based on a mixture of literature reviews and expert opinion, including both qualitative and quantitative research.[[6]] Scales are based on differing frameworks and definitions, developed in different cultural settings and most use quantitative measures such as Likert scales.[[1,5]] Reliability and validity has not been robustly tested for many of the measures.[[1,6]] Meier et al., in their 2016 literature review of “defining a good death”, found that physical symptoms are well studied in comparison to other aspects of the dying process.[[5]] They suggest that future work should include a wider variety of ages and cultures.[[5]] Furthermore, it is acknowledged that any instrument designed to measure dying and death must encompass physical, psychological, cultural, and spiritual aspects.[[7,9]]
A previously published quality of dying audit tool was created as part of a comprehensive framework of clinical audit in Canterbury District Health Board (CDHB).[[10]] CDHB services a 0.5 million population and has a single tertiary centre, Christchurch Hospital (CH), which is the largest hospital in the South Island of New Zealand. CH has an 800 bed capacity, with over 1,000 inpatient deaths per year.
The quality of dying audit tool is used on a regular basis across the CDHB, and involves a detailed review of clinical documentation looking for factors known to contribute to quality patient and family/whānau experiences of dying and death. It focuses specifically on holistic, cultural and spiritual domains. As an extension to the chart audit, staff directly involved in caring for the person were surveyed regarding their own perceptions and experiences of that death and the dying process that preceded it.
The purpose of this study was to explore whether a survey of this type was feasible and acceptable to staff, and to understand what they perceive contributes to the quality of patient and family/whānau experiences of dying and death in an acute hospital setting.
Method
In 2016, the Canterbury Regional Blood and Cancer Service at Christchurch Hospital (CH) developed a survey with the aim of retrospectively capturing staff members’ views of recent deaths of patients under their care.
This survey was piloted with staff members who cared for 13 patients who died in the Oncology ward in mid-2016. A second round of pilot testing followed in December 2016 on a further nine patients, to test the survey distribution and operationalisation processes. Deaths of inpatients in the oncology, respiratory and haematology departments were identified from daily mortuary records. The survey was sent via a web link to all staff in the respective departments within two working days of the death, inviting those who had cared for the patient prior to death to respond. The survey was hosted on RedCap (RedCap Consortium, Vanderbilt) and filled out anonymously, other than identifying their role in the patients care. There were no patient identifiers contained in the email to preserve confidentiality, but upon completing the survey, staff were asked to enter the National Health Index (NHI) number and name of the patient, so that responses for the same patient could be collated.
Feedback received from this round of pilot testing refined the delivery method, such that individual staff involved in the care of the patient in the last 48 hours of life were identified from the clinical record and survey web links subsequently targeted to these individuals only. In addition, as a result of this round of pilot testing, the two questions around family/whānau support needs were merged (Items 8 and 9, Appendix 1). A separate free-text section was added which allowed staff to comment on the needs of the family/whānau. An option for staff to request further support was also added. Appendix 1 shows the final version of the survey, indicating where changes were made after review.
The survey was implemented across selected departments in CH (Oncology, Bone Marrow Transplant Unit, Respiratory, Emergency Department (ED) and General Surgery) between November and 2016 and January 2017. A single researcher (CW) was responsible for identifying deaths on a daily basis and coordinating emails to staff.
Quantitative analysis included descriptive statistics. Answers that were ranked, “strongly agree” and “agree” were added together, as were “strongly disagree” and “disagree”.
Qualitative analysis was used to order data extracted from the free-text questions (10, 11 and 12). Inductive thematic analysis was determined as appropriate to accurately give voice to participants’ commentary. Four members of the research team (CW, RW, KG and SP) agreed the design and development of two cycles of coding.[[11]] The first cycle of coding involved descriptive analysis that examined responses to each free-text question and identified similarities and differences between participants’ perspectives and experiences on aspects of care. The second cycle of coding involved two further review processes, firstly pattern coding was utilised to collate and triangulate overall responses where the content being discussed was similar. Descriptive coding was then utilised to explore the depth of content areas being discussed by participants. The inclusion criteria for each code, drawn from the descriptive, and category, drawn from pattern coding, was discussed and defined by the research team during data analysis. The research team then further identified which categories articulated the same phenomenon and grouped these as themes. Two of the coders have extensive experience in palliative care as physicians (RW, KG), three of the coders have qualitative expertise (RW, KG and SP), and one of the coders was being mentored in the qualitative methodology and was a medical student (CW).
This study was out of Health & Disability Ethics Committee scope of review. Internal ethics approval was granted by the CDHB Oncology Department Low Risk Ethics Board.
Results
Quantitative analysis
A total of 169 staff responded to the deaths of 51 patients. The majority of survey respondents were nurses (50%), followed by doctors (39%). A small percentage of staff identified themselves as allied health professionals or other (8% and 3%, respectively).
Overall, 71.3% of the staff surveyed agreed or strongly agreed that “end-of-life care was of a high standard”. The highest scoring domain was for physical symptoms, with 68% of respondents agreeing or strongly agreeing that physical symptoms were well managed. The emotional and support/social needs domains recorded lower scores, at 65% and 50% respectively (see Table 1). Due to the changes made after the second pilot testing, the totals seen in Table 1 for each item is not constant, and represents the total number of answers for that item. The most disagreed with item was that the “patient’s physical symptoms were well managed” at 13%, followed by the “patient’s family/whānau emotional needs were met” at 12.2%.
View Table 1.
There were three free-text questions that staff could choose to answer. The overall response rate of answering at least one free-text question was 86.4%. Of those that only answered one free-text question, 80% answered the “what aspects of the end-of-life care went well” text option. The response rate of each free-text box ranged from 69.2% (“what aspects of the end-of-life care could be improved”) to 81.7% (“what aspects of the end-of-life care went well”). Of note, the free-text box “comments on family/whānau emotional/support/social needs met” was added after the second round of testing, and there was a 74.5% response rate for this option.
The last item on the survey allowed staff to request extra feedback in more detail if they required. Thirteen staff requested extra feedback. An email was sent to these staff offering additional support, but no staff took up the offer.
Qualitative analysis
Three themes were identified through the coding processes; coordinated care, culture of practice and complexity of care.
1. Coordinated care
Coordinated care encompasses levels of service delivery seen by staff as pivotal to support both the patient and their family/whānau through their last days of life. Coordinated care was inclusive of complex case needs, communication of a diagnosis of dying, supporting family/whānau at the point of death and the importance of teamwork.
Complex case needs describes the balance between staff providing support, whilst allowing the patient and family/whānau to feel empowered to make decisions and be involved in care. This was challenging when patients presented late or in a rapidly changing situation. Participants acknowledged issues such as lack of cohesion amongst clinical teams, declining services such as specialist palliative care and reduced resources on weekends. For example:
“It was extremely difficult to communicate to the family, as many didn't speak English, and only one member had a fluency in English. It was very hard to explain why we were doing things, access to the patient was often limited by family (having to translate) which made it hard to assess the physical needs of the patient. Some of the nursing team were reluctant to observe the cultural and religious requirements the family had surrounding death.” – P1
Communication of the diagnosis of dying was viewed as being pivotal to supporting the patient and their family/whānau. This included ensuring the trajectory of anticipated death was clear and appropriate supports were put in place to allow the patient and their family/whānau to make decisions. Participants were concerned that when an uncertain or unstable trajectory was identified, this was more likely to impact on the experience of dying. Conversely, participants also identified the need to ensure that for patients with a longer dying trajectory, the dying process was still discussed.
“The death was quick and sudden even though expected, and although family were not emotionally prepared they had been supported and informed that he was dying.” – P2
Poor communication fostered mistrust, which included patients not understanding their prognosis and condition severity, an inability to navigate language barriers, cultural differences and inability to comprehend information. The opposite was also the case; good communication clearly helped family/whānau navigate the dying process more easily.
“A family meeting was held where the patient and their family were made well aware that the patient was in his final days. There was a clear plan of which family member to call if the patient deteriorated, which was done.” – P3
Participants regarded teamwork as an important aspect of a good death. As multiple staff were involved in the care of a patient, it was important that teams had good cohesion and were able to work together, even when language and communication issues were present.
Culture of practice
The culture of practice encapsulates the concepts of dignity, respect and trust in the relationship between staff and a patient, i.e., values that shape the culture of practice. This culture of practice was inclusive of: after death and bereavement care, spiritual and cultural needs/practices, engagement with the family/whānau and building a relationship with patients and family/whānau which enabled trust, dignity and respect.
Participants identified that when cultural needs were respected, it often required support and resource, and not all were easy to access due to resource constraints:
“It was unfortunate that there are limited community resources catering for Muslim needs as X’s situation was very unique…” – P5
Dignity and respect of the patient and their family/whānau was a critical element. Participants described various roles that demonstrated how they enacted dignity and respect. Examples included the opportunity to assist a patient to get married while in hospital, through to care of the patient’s body after death.
“X’s partner was able to sleep in an adjoining bed which we positioned so that they could cuddle together.” – P6
Participants discussed the challenges in identifying spiritual needs of a patient, and therefore the difficulty in knowing whether these needs were met. Participants shared spiritual wellbeing signposts, such as words like “blessed” within their clinical encounters or a feeling that the family were prepared for death. A frequent area of concern was lack of privacy for the patient and family/whānau. The lack of appropriate facilities within their work places meant family/whānau were left to grieve in hallways or public spaces.
“Facilities are inadequate to support families in the ward environment. It is always sad to see families needing to grieve in public places.” – P8
Participants identified that family/whānau engagement and involvement was a marker of a positive culture of practice. Participants also noted a less ideal culture of practice when patients were unable to communicate, had no family/whānau to guide them, or took a long time to build trust with staff.
“Karakia, himene performed at the request of patient who was fully comprehensive & focussed… last wishes of X were the responsibility of the daughters with the manaaki, tautoko, awhi of all those present and administered by X’s brother… X’s immediate whānau were able to stay overnight with X if they wished…” – P10
3. Complexity of care
This theme consolidates content which describes both the complexity of physical symptoms and complexity of patient or family/whānau interpersonal dynamics. This theme specifically encapsulates the influence of distress and denial, family/whānau conflict and symptom control in end-of-life care.
“His partner appeared to have been displeased by previous care in the hospital prior to this admission which I felt made things difficult for them.” – P11
Participants explained that distress and denial could occur in patients, family/whānau and staff. Participants described how dealing with their own distress could be improved if there was more clinical support provided in difficult situations, and if resource was allocated so that they could better care for family/whānau in a busy department.
Participants also described that their job became more complex when family/whānau dynamics resulted in conflict within the clinical space in the negotiation of end-of-life care. Participants noted that the situation could escalate if the conflict was not resolved around the time of death. Conflict events created environments which were difficult for participants to navigate without appropriate system support.
“[It’s] challenging family to talk things through with as they struggled with her illness and deterioration.” – P12
Participants saw symptom control as an important success factor for a patient’s care.
“Symptom control was not dealt within a time that was appropriate to the symptoms that arose and that were reported to medical team.” – P13
Discussion
This is the first study in New Zealand to explore staff views of what contributes to quality of dying. This study aimed to assess the feasibility and acceptability of such a survey, and to obtain their perspectives of what contributes to the quality of patient and family/whānau experiences of dying and death in an acute hospital setting. A mixed method approach has enabled a richness of detail to the dataset, allowing key themes to be identified.
Obtaining staff feedback via survey was feasible and effective. Not only were staff willing to give their feedback, but the information provided was considerable. The survey allowed staff from diverse areas of the hospital an anonymous outlet for expressing concerns, and an option to request more support.
Themes emerging from this study are similar to those previously described in the literature, suggesting the survey is drawing out appropriate information from staff. A 2014 literature review focusing on nurse’s experiences of providing end-of-life care in acute hospital settings found 16 studies, using a mixture of quantitative and qualitative methods.[[12]] Themes resonated strongly through all studies, the issues around culture of the organisation being paramount, as well as difficulties around diagnosing dying, communication/collaboration and lack of time or privacy. A further study by Reid et al. of multidisciplinary focus groups found that these themes encompassed the wider healthcare team.[[13]]
Assessing quality of dying and death is not straightforward and there is no consensus in the literature as to the best tools to use. A strength of this study is that it was developed in New Zealand for a New Zealand demographic. Previous instruments have been developed in the United States of America, Canada, Taiwan and Japan.[[6]] Most quality of dying and death instruments measure symptom control on a Likert scale, with little qualitative data reported. One of the most robust and widely used, the Quality of Dying and Death (QODD) instrument, is based on quantitative data only.[[1,6]] A detailed evaluation of the quality of a death can be made by auditing the clinical record in retrospect, looking for evidence that aspects of care known to enhance quality at the end-of-life were provided.[[10]] Opinions from family/whānau members and/or healthcare professionals (as the person’s proxy) are also useful. Each of these has a role to play in providing a comprehensive view of the performance of the organisation as a whole.
As this survey was voluntary, uptake was not universal. The number of survey requests sent was not recorded, so a response rate cannot be provided. Changes were made to the survey after a second pilot, with addition of a comments section to address family/whānau concerns. This limited data available for qualitative analysis. In addition, this survey did not include surgical sub-specialities, aside from General Surgery, or the Intensive Care Unit (ICU). This survey did not include paediatric wards, but some paediatric patients were captured through ED. Whilst retrospective, since responses were collected within two working days of the death, memories were still fresh.
This study has two main implications. Firstly, it provides an insight to a New Zealand specific population. This will enable improved care of both patients and family/whānau during the dying process and after death. Secondly, this survey allowed staff an anonymous avenue for reflection, without repercussion. This is important as it allows staff to process and reflect on their own and their teams practice around dying and death.
Conclusion
A survey of staff could be used routinely in acute hospitals as part of a suite of tools to provide a holistic view of dying and death across the organisation. It would complement other methods such as retrospective audits and family/whānau interviews/questionnaires. Outcomes may inform policy development and quality initiatives, informing service leads about areas requiring attention and highlighting individual staff members who might benefit from additional training and support.
View Appendix 1.
Summary
Abstract
Aim
To understand what healthcare staff perceive contributes to the quality of patient and family/whānau experiences of dying and death on a hospital inpatient ward.
Method
A survey was created, piloted and sent to all staff members who had cared for a deceased patient within two working days of their death, at Christchurch Hospital (CH), New Zealand. The survey comprised questions evaluating whether the patients physical, emotional, social or family/whānau needs were met, using both a Likert scale and free-text options. The survey was sent over a three-month period in 2016/2017.
Results
A total of 169 staff responded to the deaths of 51 patients. The majority (71.3%) of staff agreed that “end-of-life care was of a high standard”, with the physical symptoms domain holding the highest score for both agreement (68%) and disagreement (13%) that “physical symptoms were well managed”. Qualitative analysis of free-text responses revealed three themes: coordinated care (service delivery, complex case or communication needs, teamwork); culture of practice (dignity, trust, respect and relationships); and complexity of care (encompassing complex physical symptoms or patient or family/whānau interpersonal dynamics).
Conclusion
Evaluation of quality of death in hospitals can be enhanced by routine use of surveys of staff who cared for the deceased person. Such surveys could comprise part of a suite of tools to provide a holistic view of dying and death, complementing methods such as retrospective audits and family/whānau interviews.
Author Information
Acknowledgements
Correspondence
Correspondence Email
Competing Interests
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Dying in hospital—staff perceptions on providing quality care
Given the universality of death, examining the quality of clinical care around dying should be part of routine healthcare.
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