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Findings of the
National End of Life Survey 2023
Findings of the National End of Life Survey | 2023
Without your participation and overwhelming generosity and willingness to share your experiences, the survey would not have been possible. We wish to acknowledge the loss of your loved ones and we appreciate how diɝcult it may have been to consider the answers to the questions in the survey. The survey ensures that your voice will be heard by those involved in changing and improving end-of-life care in Ireland. Thank you also to the sta working across all healthcare settings and the community, as well as the General Register Oɝce and Civil Registration Service oɝces for contributing to the success of the survey. The survey was overseen by a national steering group and advisory group. We acknowledge the direction and guidance provided by these groups. Appendix 1 lists the members of these groups. Finally, we thank the Irish Hospice Foundation for the signiȴcant and ongoing support it has provided in developing and publicising the survey. Thank you Thank you to all of the bereaved family members and friends who participated in Ireland’s first National End of Life Survey.
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Findings of the National End of Life Survey | 2023
About the National Care Experience Programme The National Care Experience Programme seeks to improve the quality of health and social care services in Ireland by asking people about their experiences of care and acting on their feedback. The National Care Experience Programme is a joint initiative by the Health Information and Quality Authority (HIQA), the Health Service Executive (HSE) and the Department of Health. Patient and service user representatives and advocates are also involved at all levels of the programme’s governance structures. The National Care Experience Programme has a suite of surveys that capture the experiences of people using these services. The programme implements the National Inpatient Experience Survey, the National Maternity Experience Survey, the National Nursing Home Experience Survey, the National Maternity Bereavement Experience Survey and the National End of Life Survey. The surveys aim to learn from people’s feedback about the care received in health and social care services to ȴnd out what is working well, and what needs to be improved. A National Care Experience Programme Survey Hub is available to provide support, guidance, information and resources to assist providers to develop, conduct and analyse their own surveys, and act upon the ȴndings.
Find out more at www.yourexperience.ie.
About the National End of Life Survey
The National End of Life Survey was the ȴrst national survey to ask bereaved people about the care provided to a family member or friend in the last months and days of their life. The purpose of the survey was to learn from people’s experiences of end-of- life care in order to improve the services provided both to people who are dying, and to their loved ones. The ȴndings of this national survey provide valuable information on the care provided to people using services and their families at end of life, acknowledge what is working well and identify areas where improvements are needed.
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Findings of the National End of Life Survey | 2023
Executive Summary
89%
4,570
of those who took part rated the overall care that their relatives and friends received as ‘good’ or ‘very good’
48% response rate
bereaved relatives and friends of people who died between September and December 2022 took part
Responses received when participants were asked where their relative or friend died:
22.4% At home
39.4% Hospital
10.7% Hospice
27.4%
0.2%
Nursing Home
Somewhere else
Areas of good care experience
Areas requiring improvement
Continuity, availability and responsiveness of care Coordination between services and sta involved in care Help and support for the emotional needs of the person who died
The respect and dignity shown by sta to the person who died Conȴdence and trust in healthcare sta Clear explanations provided to relatives and friends
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Findings of the National End of Life Survey | 2023
What were the main findings of the National End of Life Survey? In total, 4,570 bereaved family members and friends participated in the ȴrst National End of Life Survey. People who registered the death of a family member or friend that occurred between 1 September and 31 December 2022 were invited to participate. Participants 1 shared their experiences of the care their relative or friend received in the last months and days of their life, including the care they received at home, in a nursing home or residential care facility 2 , in hospital and in a hospice. The majority of participants across these care settings said that the end-of-life care that their relative or friend received was either ‘good’ or ‘very good’ and that they had been treated with respect and dignity. However, communication and the continuity, availability and responsiveness of care were highlighted as areas which required improvement. Care experiences in di erent settings The survey explored the experiences of people who received care or died in various settings including hospitals, nursing homes, hospices and in their homes. It was clear that the people who died experienced a variety of pathways of care, involving multiple care settings and services in the last months and days of their lives. Just under 40% of participants said that their relative or friend had died in a hospital, followed by 27% who died in a nursing home or residential care facility, 22% who died at home, and 11% who died in a hospice. 3 There were noteworthy dierences in the proȴle of deaths that occurred in each setting. For example, those who died in hospital typically had a shorter duration of illness than those in other settings. This is an important consideration when comparing experiences in dierent settings. Two survey questions asked about coordination in the last months and days of life. Question 64 asked participants if they felt there was good coordination between the dierent services and sta that cared for their relative or friend in the last three months of their life. In total, 1,699 participants (45%) answered that there ‘deȴnitely’ was good coordination between the services and sta. Question 76 asked if there was good coordination between healthcare sta in the last two days, with 3,007 participants (74%) saying that there was ‘deȴnitely’ good coordination.
1 ‘Participants’ is used to refer to the person who completed the questionnaire. The terms ‘relative or friend’, or ‘the person who died’ are used to refer to the person who received care. 2 Hereafter, nursing homes or residential care facilities are referred to as ‘nursing homes’ for the sake of brevity. 3 In total, eight participants said that their relative or friend died in an ambulance or ‘somewhere else’.
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Findings of the National End of Life Survey | 2023
Participants’ comments also highlighted this topic, with many expressing a desire for better continuity, availability and responsiveness between the various services, settings and professionals involved in end-of-life care. Participants whose relative or friend died in a hospice were more likely to rate their end-of-life care as ‘good’ or ‘very good’ (98%), when compared with a nursing home or residential care facility (92%), hospital (84%) or those who died at home (89%). There were a number of other notable dierences in responses to questions based on where the person died. For example, 99% of participants whose relative or friend died at home said that they had died ‘in the right place’, compared with 94% for hospices, 89% for nursing homes and 75% for hospitals. 4 In addition, participants were most likely to say they always felt welcome to visit their relative or friend in a hospice at any time (95%) in the last three months, compared with a nursing home (81%) or a hospital (58%). 5 When asked about visiting hospitals and other healthcare settings in the last two days of their relative or friend’s life, most participants said they were given the option to visit at any time, including outside of regular visiting hours. Areas of good care experience and areas requiring improvement The survey included three free-text questions, which asked participants to describe what was good about the care their relative or friend received, what could be improved and for any further comments or suggestions. In their responses to these questions, participants highlighted the respect and dignity with which their relative or friend was treated. In addition, a large number of comments praised sta for the care they provided, as well as the physical, spiritual and emotional support that was made available.
“I have little to compare to, but I felt my wife was given care that was second to none. The compassion and commitment from the doctors, nurses and sta was excellent. I cannot express my gratitude enough.”
When asked to describe in their own words what could be improved, participants highlighted issues relating to the continuity, availability and responsiveness of care; and a desire for clearer and more consistent communication.
“Coordination of various medical teams and communications with family - this seemed to be entirely lacking and most contact with doctors was because you bump into them as opposed to a formal way of getting information.”
4 Question 90 asked participants ‘On balance, do you think that they died in the right place?’ 5 The denominator for these ȴgures includes those who said the question was not applicable to them or those who were not allowed to visit due to restrictions.
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Findings of the National End of Life Survey | 2023
Using the methodology described in Appendix 3, questions where participants reported good care experiences and questions where there was the most room for improvement were identiȴed. These questions were also highlighted due to their strong relationship with participants’ overall ratings of the care both they and their relative or friend received at home, in nursing homes or residential care facilities, in hospitals and hospices. 6 Participants highlighted some areas of good care received during their relative or friend’s last months and days of life. For example, most participants had conȴdence and trust in the healthcare sta caring for their relative or friend. Participants also said that their relatives or friends were treated with respect and dignity and with kindness and compassion in the last two days of their life. In addition, participants felt that sta did everything they could to help manage their relative or friend’s symptoms (such as nausea, constipation, breathing diɝculties or restlessness), and explained their relative or friend’s condition and care in a way they themselves could understand. A number of areas for improvement in end-of-life care were also identiȴed using the methodology in Appendix 3. For example, some participants felt that their relative or friend did not get help from healthcare sta as soon as they needed it, as well as help and support with their emotional needs (such as feeling worried, feeling anxious, feeling low). Some participants felt that there was a lack of coordination between healthcare sta during the last two days of their relative or friend’s life. In addition, participants said that they were not given enough help and support by healthcare sta to talk to children or young adults about their relative or friend’s illness. Participants’ responses relating to dierent care settings also provided a number of important insights. Across each of the four main settings included in the survey, participants highlighted their conȴdence and trust in sta, the kindness and compassion of sta, as well as symptom management and the respect and dignity with which the person who died was treated. For those who received care at home, access to out of hours general practitioner (GP) care and support for religious and spiritual needs were two of the lower-scoring questions. While for those who received care in a nursing home, support to be involved in family events, and being involved in decision-making were two of the lower-rated areas. Participants whose relative or friend received care in a hospital identiȴed emotional support for the person who died, and getting help when it was needed as two lower- scoring areas. For those who died in a hospice, support for involvement in family events and sensitive communication at end of life were lower-rated areas.
6 Relationships were calculated based on correlations of relevant questions with overall experience ratings for each setting and or questionnaire section: Q21, Q34, Q47, Q60, Q91, Q100. Appendix 3 also shows areas of good experience and areas needing improvement for each care setting included in the survey.
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Findings of the National End of Life Survey | 2023
Bereaved people’s experiences of care and support The survey included nine questions that asked about the care and support provided to bereaved people themselves. The highest-scoring question in this section related to sensitivity from healthcare sta, with 84% of participants saying that healthcare sta always engaged with them in a sensitive manner after their relative or friend died. The lowest-scoring question related to support to talk to children or young adults, with 29% of participants saying that healthcare sta did not provide enough help and support to talk to children or young adults about their relative or friend’s illness. 7 Conclusions The ȴndings of the ȴrst National End of Life Survey provide valuable insights into the care journeys of those who received end-of-life care during the sample period. The people who died during this period typically received care in multiple and varied settings, including hospitals, nursing homes, hospices and in their homes. It was clear that every end-of-life care journey is unique. Most participants had conȴdence and trust in healthcare sta and felt that their relative or friend was always treated with respect, dignity, kindness and compassion. However, some participants said that their relative or friend’s care was not as well coordinated as it should have been, and that they did not always receive help from healthcare sta as soon as they needed it. Of the settings covered in the survey, hospitals were the most common place of death. Hospices received the most positive ratings across all survey questions. What happens next? The HSE will use the survey ȴndings to inform the development of quality improvement plans at national and local levels. These quality improvement plans will describe the steps that the HSE will take to address the issues highlighted by participants in the survey. Quality improvement plans will be available on www.yourexperience.ie in April 2024. Private and voluntary end-of-life care providers can use the survey results to develop plans on how they will respond to the ȴndings. The National Care Experience Programme is engaging with organisations that represent private and voluntary providers to support them to understand and use the ȴndings of the survey. The Department of Health will use the information gathered to inform the development of policy in relation to end-of-life care. The ȴndings of the survey will inform the Irish Hospice Foundation’s work supporting those in receipt of end-of-life care and their families. Finally, the ȴndings of the survey will inform national standards and HIQA’s monitoring and regulation of the services included in this survey.
7 It is important to note that 56% of respondents (2,412) to this question said that they did not need help with this, or they did not have any contact with healthcare sta.
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Findings of the National End of Life Survey | 2023
Contents
About the National Care Experience Programme
4 4 5 6 6 7 9 9 9
About the National End of Life Survey
Executive Summary
What were the main ȴndings of the National End of Life Survey?
Care experiences in dierent settings
Areas of good care experience and areas requiring improvement
Bereaved people’s experiences of care and support
Conclusions
What happens next?
Chapter 1: About the National End of Life Survey
12
Who was eligible to participate in the survey? What questions were asked in the survey? What care settings were included in the survey?
13 14 15 17 19
Who participated in the National End of Life Survey 2023? Why measure the experiences of bereaved people?
Chapter 2: In their own words
20
Analysis of bereaved people’s comments
21 24 26
Q101 Overall, what was good about the care your relative or friend received?
Q102 Was there anything that could have been improved?
Q103 Do you have any other comments or suggestions about the care your relative or friend received?
28
Chapter 3: Participants’ experiences of the care provided to a family member or friend in the last three months of their life
30
Care at home
32 36 39 42 46 49 53 56 59
Overall experiences of care at home
Care in a nursing home or residential care facility
Overall experiences of care in a nursing home or residential care facility
Care in a hospital
Overall experiences of care in an acute hospital
Care in a hospice
Overall experiences of care in a hospice Overall care in the last three months
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Findings of the National End of Life Survey | 2023
Chapter 4: Participants’ experiences of the care provided to a family member or friend at the end of life
60
Experiences of care in the last two days of life
61 62 62 64 68 73 78 83 84
Location of care in the last two days
Place of death
Experiences of care at home in the last two days of life Experiences of care in a nursing home in the last two days of life Experiences of care in hospital in the last two days of life Experiences of care in a hospice in the last two days of life
Overall experiences of care at the end of life Overall experiences of care at the end of life
Chapter 5: Participants’ experiences of the care and support provided to them in the last days of their relative or friend’s life
88 91 91
Sources of support
Overall experiences of care and support
Chapter 6: Coordination of care across settings
95
Examples of comments relating to continuity, availability and responsiveness of care
99
Conclusion
101
What happens next?
102
References
103
Appendices
104 104 106 110 112 116 118 120
Appendix 1: Membership of the National End of Life Survey governance groups Appendix 2 Who took part in the National End of Life Survey 2023?
Appendix 3: A technical note on analyses and interpretation Areas of good care and areas needing improvement
Areas of good care experience Areas needing improvement
Appendix 4: The National End of Life Survey 2023
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Findings of the National End of Life Survey | 2023
About the National End of Life Survey 1
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Findings of the National End of Life Survey | 2023
The National End of Life Survey is the ȴrst national survey asking bereaved people about the care provided to a family member or friend in the last months and days of their life. The purpose of the survey is to learn from people’s experiences of end-of-life care in order to improve the services provided both to people who are dying, and to their relatives or friends. Who was eligible to participate in the survey? People who registered the death of a family member or friend that occurred between 1 September and 31 December 2022 were invited to participate in the survey (Figure 1.1). Sudden, maternal and child deaths were not included in the survey, as the care pathways in these circumstances are dierent. 8 Eligible people were sent a survey pack in the post between March and May 2023, with the option to complete the survey online or by returning the survey questionnaire by post.
Inclusion and exclusion criteria
Figure 1.1
N
Individuals who registered the death of a family member or friend (aged 18 or over) between 1 September and 31 December 2022
N
Maternal, sudden or accidental deaths
8 In cases where people were not invited to participate but felt they should have been, it was possible to opt in to the survey. Two people opted in to the survey in this manner.
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Findings of the National End of Life Survey | 2023
What questions were asked in the survey? The National End of Life Survey asked participants about the end-of-life care provided to their relatives or friends in the last months and days of life. The survey included questions on pain management, respect and dignity, emotional support, communication with healthcare sta and the provision of information. The survey questionnaire can be found in Appendix 4. The questionnaire included a total of 110 questions, of which three questions were free text, asking participants to describe their experiences in their own words. In total, 239 people 9 , including bereaved relatives, specialist palliative care sta, general practitioners, medical consultants and clinical medical directors, nursing sta based in the community, in nursing homes, in hospices and in acute hospitals, home care support sta, health and social care professionals, academic sta, policy makers, service funders and regulators were involved in developing and selecting the questions most relevant to the Irish context. (1) The development steps are outlined below: 1. An international review of bereaved relative experience surveys identiȴed the international experience and best practice with regard to the models and methodologies employed to deliver a National End of Life Survey. (2) 2. Focus groups involving bereaved relatives, representatives from voluntary and advocacy organisations, health and social care service sta as well as policymakers and healthcare regulators identiȴed the key themes to be included in the survey. 3. A gap analysis was undertaken, which consisted of reviewing national standards and policies ensuring that all aspects of care that are important from an Irish context are captured. 4. A two-round Delphi study was undertaken to identify priority questions to be included in the questionnaire 10 . 5. Picker Institute Europe checked the measurement and analytic quality of the questions. 6. Cognitive interviews with bereaved relatives who have used health and social care services were undertaken to assess the clarity and appropriateness of the proposed National End of Life Survey questionnaire. 7. A further review was undertaken by the National End of Life Survey advisory group members, with representatives of bereaved relatives, the Department of Health, HIQA, the HSE and special remit of organisations representing family carers, palliative and bereavement care.
9 There were 68 focus group participants, 163 people took part in the Delphi study, and eight cognitive interviews with recently bereaved people. 10 In the Delphi study, participants were asked to rate and rank potential questions for inclusion in the ȴnal questionnaire.
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Findings of the National End of Life Survey | 2023
What care settings were included in the survey? Bereaved people were asked about the end-of-life care provided to their relative or friend in hospitals, hospices, 11 nursing homes and the home. Figure 1.2 gives a short description of each of the care settings included in the survey.
Description of settings of care
Figure 1.2
Care at home
Care in a nursing home or residential care facility
Experiences of care at home in the last three months of life, including homecare services, GPs and Public Health Nurses.
Experiences of care in a nursing home or residential care facility in the last three months of life, including pain and symptom management, out of hours support and visiting.
17 QUESTIONS
12 QUESTIONS
Care in an acute hospital Experiences of care in an acute hospital in the last three months of life, including pain and symptom management, out of hours support and visiting.
Care in a hospice
Experiences of care in a hospice in the last three months of life, including pain and symptom management, out of hours support and visiting.
12 QUESTIONS
12 QUESTIONS
11 The questionnaire asked respondents to choose from the list of the 14 specialist palliative care inpatient units. 11 responses were received for other settings and are taken into account in the below results.
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Findings of the National End of Life Survey | 2023
Care in the last two days of life Experiences of care in the last two days of life, including pain and symptom management, emotional, spiritual and personal care needs.
Care at the end of life
Experiences of care at the end of life.
18 QUESTIONS
7 QUESTIONS
Your experiences of care
Experiences of the care and support provided to the participant in the last days of their relative or friend’s life.
9 QUESTIONS
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Findings of the National End of Life Survey | 2023
Who participated in the National End of Life Survey 2023? Of the 9,446 people who were invited to participate in the National End of Life Survey 2023, 4,570 returned a completed questionnaire (48.4% response rate). Of these, 31.7% (n=1,390) were male, 68.0% (n=2,981) were female, with 10 participants answering with ‘Other’ or ‘Prefer not to say’. Over half of participants (59.2%, n=2,593) were aged between 50 and 69 years (Figure 1.3). 12
Age and gender of participants
Figure 1.3
0 10 20 30 40 50 60 70 80
68.0%
32.1%
31.7%
27.1%
15.2%
14.6%
6.7%
0.7% 3.1%
0.6%
0.1% 0.2%
18-29 years
30-39 years
40-49 years
50-59 years
60-69 years
70-79 years
80-89 years
90+ years
Male Female Other Prefer not to say
Most participants were adult children of the person who died (53.6%, n=2,409), while approximately a quarter (23.6%, n=1,059) were spouses or partners (Figure 1.4).
Relationship to the person who died
Figure 1.4
0
10
20
30
40
50
60
23.6%
Husband/wife/civil partner/partner
Son/daughter
53.6%
8.4%
Brother/sister
1.5%
Parent
Other relative
8.5%
1.4%
Friend/neighbour
Sta in care home
0.1%
3.0%
Other
12 Participants who responded ‘Other’ (0.1% or n=3) or ‘Prefer not to say’ (0.2% or n=7) are not included in Figure 1.3.
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Findings of the National End of Life Survey | 2023
The majority of people (61.8%, n=2,660) were 80 years of age or older when they died, and had been ill for at least one month (75.6%, n=3362). Figure 1.5 shows the age and gender of the people who died. 13 Figure 1.6 shows the illnesses that people who died had in their last days and hours of life, while Figure 1.7 shows how long they had been ill before they died.
Age and gender of people who died
Figure 1.5
GENDER
60
AGE GROUP
52.0%
47.8%
50
38.0%
40
30
23.8%
22.1%
20
10.2%
10
5.9%
0
18 to 59 years
60 to 69 years
70 to 79 years
80 to 89 years
90+ years years
Male
Female
Illnesses in the last hours and days of life
Figure 1.6
0
500
1,000
1,500
2,000
1,606
Cancer
242
Covid-19
1,137
Dementia
1,069
Heart condition
Inȵuenza or pneumonia
663
Lung condition
760
End stage renal disease
410
Neurological condition
441
63
Don't know
Something else
864
13 Participants who responded ‘Other’ (0.1% or n=5) or ‘Prefer not to say’ (0.1% or n=3) are not included in Figure 1.5.
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Findings of the National End of Life Survey | 2023
Duration of illness
Figure 1.7
0.0 10.0 20.0 30.0 40.0 50.0
42.4%
One year or more
Six months or more, but less than 1 year
12.3%
20.9%
One month or more, but less than six months
14.4%
One week or more, but less than one month
6.8%
One day or more, but less than one week
1.0%
Less than 24 hours
2.3%
They were not ill
Why measure the experiences of bereaved people? The National Standards for Residential Care Settings for Older People in Ireland state that ‘each resident continues to receive care at the end of their life which respects their dignity and autonomy and meets their physical, emotional, social and spiritual needs’. (3) In addition, the National Standards for Safer Better Healthcare note that people approaching end of life are particularly vulnerable and should be supported through a culture of kindness, consideration and respect. (4) Experiences of people using health and social care services are recognised as an important indicator of healthcare quality and safety. However, there are several challenges associated with surveying people who are dying or likely to die, including signiȴcant ethical issues and the potentially frail, impaired and vulnerable condition of people at the end of life. (5, 6) Therefore, it is recommended internationally to survey bereaved relatives and friends in order to gain insights into the experiences and quality of end-of-life care. (5, 7, 8) The Oɝce of the Ombudsman, in a report on Developments in End of Life Care in Irish Hospitals , suggested that ‘systems should be put in place to capture the views of bereaved relatives on a regular basis’. (9) Furthermore, the Survey of Bereaved Relatives: VOICES MaJam , which asked bereaved relatives about their experiences of end-of-life care in the Mater Misericordiae University Hospital and St James’s Hospital, recommended carrying out a national survey. (10) The National End of Life Survey is the ȴrst national survey in Ireland to ask bereaved people about the end-of-life care provided to their relatives or friends, and will inform the development of initiatives aimed at improving the services provided both to people who are dying and to their relatives or friends.
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Findings of the National End of Life Survey | 2023
In their own words 2
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Findings of the National End of Life Survey | 2023
Analysis of bereaved people’s comments Three free-text questions asked participants to describe their experiences in their own words:
Q101 . Overall what was good about the care your relative or friend received?
Q102. Was there anything that could have been improved?
Q103. Do you have any other comments or suggestions about the care your relative or friend received? In total, 9,520 comments were made in response to these free-text questions. A framework approach (11) was used to analyse the comments received in response to the open-ended questions. This approach involves multiple analysts reviewing survey comments, identifying a framework of key concepts and themes, then applying the framework across all survey comments. An analytical framework consisting of 49 codes was developed (Table 2.1). These codes were then mapped to 18 themes (Table 2.2). 14 The framework helped to organise and systematically reduce the thousands of comments into manageable segments of information. The framework approach is suited to analysing large volumes of qualitative information and has previously been used to analyse comments made in the National Maternity Bereavement Experience Survey and the National Inpatient Experience Survey.
14 748 short comments (‘yes’, ‘no’, ‘none’, ‘NA’, ‘no comment’) were received across the three open- ended questions. These are included in the ‘general and other comment’ theme.
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Findings of the National End of Life Survey | 2023
List of comment codes
Table 2.1
Communication – sta with sta Communication – sta with deceased Communication – sta with respondent
Feedback and complaints process
Admin sta General sta
GPs
HCAs (Health Care Assistant)
Public health nurse (PHN), District/ community nurse
Ambulance service
Community health
Doctors
Homecare and home help
Involvement in patient decisions
Diagnosis and tests
Nurses
Staɝng – access to speciȴc palliative care expertise and training
Food and nutrition
Caring for patients with speciȴc specialist needs
Coordination of care within settings
Continuity of care across care settings
Pain management
Staɝng levels, availability and responsiveness
Symptom and medication management Medical needs and equipment
Urgent or out of hours support
Psychosocial, emotional, spiritual and cultural support for deceased
Access to and availability of local care
Experience of care (Home/Community)
General quality of care
Model of care (public/private)/Private Insurance issues
Experience of care (Hospice)
ED/A&E experiences
Impact of COVID
Dignity, respect, privacy, compassion, kindness
Experience of care (Hospital)
Experience of care (Nursing Home) Facilities – end of life (hospital/nursing home/hospice). Facilities – general (hospital/nursing home/ hospice)
Resources for respondent
Personal belongings
Psychosocial, emotional, spiritual and cultural support for family
Ward environment
Financial and legal impacts of caring
Visiting
Timing of end-of-life care General comments that are negative, neutral Care at time of death General appreciation, gratitude, a non-speciȴc positive comment
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Findings of the National End of Life Survey | 2023
List of summary themes
Table 2.2
Communication
General and other sta
Community sta
Hospital Doctors
Continuity, availability and responsiveness of care
Involvement in decisions
Experience of care at home / in community Nurses
Physical, emotional and spiritual needs of the person who died
Experience of care in hospice
Experience of care in hospital
Quality and type of care
Experience of care in nursing home
Respect and dignity
Support and resources for participants
Facilities and resources
General and other comment
Transition to end-of-life care
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Findings of the National End of Life Survey | 2023
Q101. Overall, what was good about the care your relative or friend received?
This question asked what was good about the care received. In total, participants made 3,573 comments in response to this question. Figure 2.1 shows the breakdown of themes covered within these comments.
Responses to Q101 broken down by theme
Figure 2.1
0 200 400 600 800 1,000 1,200 1,400
595
Communication
Community Sta
533
Continuity, availability and responsiveness of care
929
409
Experience of care at home / in community
331
Experience of care in hospice
924
Experience of care in hospital
492
Experience of care in nursing home
663
Facilities and resources
262
General and other comment
General and other sta
1,070
408
Hospital doctors
216
Involvement in decisions
726
Nurses
Physical, emotional and spiritual needs of the person who died
998
313
Quality and type of care
1,185
Respect and dignity
394
Support and resources for respondents
436
Transition to end-of-life care
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Findings of the National End of Life Survey | 2023
The most frequently occurring themes were ‘Respect and dignity’, ‘General and other sta’ 15 and ‘Physical, emotional and spiritual needs of the person who died’. A selection of comments illustrating these themes is provided below.
Respect and dignity
“Hospice was peaceful and at all times Mam was cared for to the highest standard, treated with respect, love, kindness and dignity by all. I was also treated with respect and kindness and involved in all aspects of her care. Sta were excellent and communicated clearly and available to talk at all times.”
“He was treated with dignity and respect during his time. All his wishes were considered from the time he entered the [nursing home]. He was brought out on visits, social occasions.”
General and other sta
“To be honest I couldn’t fault the care and love my husband received in [nursing home]. I found all the sta members from nurses, carers, kitchen sta. Everyone to be so caring and loving and with a wonderful understanding and expertise, knowledge of dementia.”
“The nurses were the best part of the overall experience we had as a family when we lost our loved one they did the best in an overstretched work place the cleaners were so good and all the receptionist for the doctors were ever so helpful.”
Physical, emotional and spiritual needs of the person who died
“Humanity shown by care sta. Very responsive to his religious needs.”
“The care was very professional. The carers were excellent and very caring. Our mother enjoyed seeing them and having a little chat. Palliative care were always at the other end of the phone to assist, contact the GP etc. and ensure that Mam was doing ok.”
15 Comments in this theme mentioned experiences of sta other than doctors, nurses, administrative sta, sta in the community such as cleaners, security, catering or comments referring to all sta.
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Findings of the National End of Life Survey | 2023
Q102 Was there anything that could have been improved? This question asked if there was anything that could be improved about the care received. In total, participants made 2,868 comments in response to this question. Figure 2.2 shows the breakdown of themes covered within these comments.
Figure 2.2 Responses to Q102 broken down by theme
0 200 400 600 800 1,000 1,200 1,400
943
Communication
Community Sta
526
Continuity, availability and responsiveness of care
1,146
Experience of care at home/ in community
405
78
Experience of care in hospice
800
Experience of care in hospital
239
Experience of care in nursing home
636
Facilities and resources
995
General and other comment
General and other sta
543
369
Hospital doctors
111
Involvement in decisions
407
Nurses
Physical, emotional and spiritual needs of the person who died
771
434
Quality and type of care
350
Respect and dignity
Support and resources for respondents
319
362
Transition to end-of-life care
26
Findings of the National End of Life Survey | 2023
For Q102, most of the comments related to the ‘Continuity, availability and responsiveness of care’, ‘Communication’ and ‘General and other comment’ 16 themes.
Continuity, availability and responsiveness of care
“At times, he maybe struggled with his care, because he didn’t have medical care at hand. We had a carer in the house during the day, but regular scheduled medical check up by a nurse or doctor would have helped - maybe every two or three days.”
“Very very poor support after-hours when a medical emergency happened after hours. Both attending resigtrar and nursing sta had poor understanding of what to do, further increasing the anxiety of my Dad and family.”
Communication
“I wish I could have been given more information about the end of life pain relief. My partner was sedated while I wasn’t there so I didn’t really get a chance to say goodbye while he was conscious. I don’t think we got enough information towards the end.”
“I felt communication between the doctors, nurses and myself was minimal. My brother had asked that they speak with me and keep me informed but I always had to go and look or request time to discuss. There does not seem to be anyone to liaise with me as my brother was not taking much on board.”
General and other comment
“Hospital bed which has been provided by the health board was not collected for almost 3 weeks after the death of my spouse. This caused me upset as my spouse had to stay in hospital for an extra day because bed was not available and then I had bed in my house for 3 weeks which someone else could have used.”
“More clarity on using health insurance or not - and what the dierence really means in the particular circumstances you ȴnd yourself in, it’s always vague and approached at a very vulnerable time.”
16 Comments in this theme included neutral or non-speciȴc negative comments.
27
Findings of the National End of Life Survey | 2023
Q103 Do you have any other comments or suggestions about the care your relative or friend received? This question asked if they had any other comments or suggestions about the care received. In total, participants made 2,304 comments in response to this question. Figure 2.3 shows the breakdown of themes covered within these comments.
Figure 2.3 Responses to Q103 broken down by theme
0
200
400
600
800
1,000
668
Communication
Community Sta
399
Continuity, availability and responsiveness of care Experience of care at home/ in community
791
324
132
Experience of care in hospice
676
Experience of care in hospital
270
Experience of care in nursing home
423
Facilities and resources
728
General and other comment
General and other sta
604
303
Hospital doctors
147
Involvement in decisions
381
Nurses
Physical, emotional and spiritual needs of the person who died
671
406
Quality and type of care
366
Respect and dignity
Support and resources for respondents
278
314
Transition to end-of-life care
28
Findings of the National End of Life Survey | 2023
For Q103, most of the comments related to the ‘Continuity, availability and responsiveness of care’, ‘Experience of care in hospital’ and ‘Physical, emotional and spiritual needs of the person who died’ themes.
Continuity, availability and responsiveness of care
“If everyone receives this level of care at the end, it’s to be commended. It felt like a co- ordinated mission by all to give my mother the most comfort and dignity during the toughest period of her life.”
“I think weekend sta should familiarise themselves more with the patients they are looking after. Several times when asked at weekends the nurses etc, didn’t even know the patients name, or what treatment they were getting.”
Experience of care in hospital
“Visiting was very limited in the hospital setting, even though my relative could not communicate with the sta. When palliative care was mentioned, care became disjointed and my husband was embarrassed and very sad at the way he was treated and cared for.”
“I would like to send my utmost appreciation to the sta at [Hospital]. They were so kind and compassionate to us and nothing was a problem.”
Physical, emotional and spiritual needs of the person who died
“I would love to have seen more chaplaincy services. We did ask for priest after Mammy had passed away and they did phone a local priest who did come in and was so kind. Mammy was very religious and would love to have seen a chaplain each day.”
“Dad received a lot of assistance from dierent health areas, Physio, OT etc. He received a hospital bed and many aids this was a great service.”
29
Findings of the National End of Life Survey | 2023
3
Participants’ experiences of the care provided to a family member or friend in the last three months of their life
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Findings of the National End of Life Survey | 2023
The National End of Life Survey asked participants to describe their relative or friend’s experiences of care from the last three months until their death. Similar surveys undertaken in other jurisdictions typically include questions about experiences in the weeks and months before end of life, as well as care received in the last days of life. A three month period was selected in order to provide a deȴned time period where those who died received care in a variety of settings. This chapter presents the results for survey questions relating to care in the last three months of life, broken down by the relevant care setting.
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Findings of the National End of Life Survey | 2023
Care at home
“The public health nurse couldn’t have been kinder, more supportive, professional and knowledgeable. He called to the house almost daily and did everything in his power to respect my mothers wishes and care for her with such compassion.”
“When he came home for 6 weeks, his care was distributed to all dierent teams in the community. This was very hard on my husband and I. I spent all my time trying to contact them.”
“Doctors’ home visits should be facilitated especially for elderly with poor mobility and no transport in rural areas. I attempted to get 2 local doctors to make a home visit in the weeks before my mother went to hospital. They both refused.”
“We got good support with having equipment in place at home - hospital bed, air mattress, commode, special pressure cushion etc. The Palliative Care team had pre-ordered a lot of meds that might be needed - this was reassuring, we had them stored at home and knew there would be no panic if they were needed when chemists closed at night or weekends etc.”
“My mother wanted to die at home. Hospice would have probably found it easier if she would have been admitted but they provided us with all the support we needed so that she could die at home.”
“Support from the Palliative Care team in the ȴnal days was limited. They were very nice people with loads of experience and wisdom but they seemed to be very stretched. We had our ȴnal visit 2.5-3 days before he died. After that we just got telephone support.”
32
Findings of the National End of Life Survey | 2023
In total, 2,525 bereaved relatives (58.5%) said that the person who died had spent time being cared for at home during the last three months of their life. Figure 3.1 shows the counties where people were cared for at home.
County of home care
Figure 3.1
0.0
5.0
10.0
15.0
20.0
25.0
1.3% 1.4%
Carlow
Cavan
2.4%
Clare
11.9%
Cork
4.8%
Donegal
22.8%
Dublin
5.3%
Galway
4.3%
Kerry
3.7%
Kildare
2.8%
Kilkenny
1.9%
Laois
1.0%
Leitrim
4.2%
Limerick
0.8%
Longford
2.1%
Louth
3.4%
Mayo
3.1%
Meath
1.3%
Monaghan Oaly
2.0%
1.5% 1.6%
Roscommon
Sligo
4.7%
Tipperary
2.9%
Waterford
1.5%
Westmeath
4.1%
Wexford
3.2%
Wicklow
Participants were asked about the services that had provided care and support at home to their relative or friend in the last three months of their life. People being cared for at home most frequently received care and support from their GP and public health nurse, followed by paid carers and community palliative care nurses. 367 participants said that the person who died did not receive care and support from any services at home (Figure 3.2).
33
Findings of the National End of Life Survey | 2023
Figure 3.2 Services providing care and support at home 17
0 250 500 750 1,000 1,250 1,500 1,750
1,623
Public health nurse
1,123
Paid carer
1,013
Community palliative care nurse
342
Nurse at night
1,294
GP
99
Social worker
621
Pharmacist
466
Occupational therapist
234
Physiotherapist
They did not receive care and support from these services
367
14
Don't know
Figure 3.3 presents the results for questions on ‘care at home’. The highest-scoring question concerned being treated with respect and dignity by the public health nurse, with 1,747 of 1,917 people (91.1%) saying that their relative or friend was always treated with respect and dignity by the public health nurse. The lowest-scoring question related to the availability of a GP to visit out of hours, with 579 of 1,482 people (39.1%) saying that the GP was not available to visit if their relative or friend required a home visit from the GP or GP out-of-hours service for help with urgent problems outside of normal working hours.
17 It was possible to select more than one response option for this question.
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