1. Views of Informal Carers’ Evaluation of Services (VOICES)
Dr Jackie Robinson
Nurse Practitioner and Service Lead Clinician, Auckland City Hospital Palliative Care Team
Senior Lecturer, School of Nursing, University of Auckland

2. Development of VOICES
Regional study of care for the dying (Addington-Hall et al, 1995)
Audit of local services
Face to face delivered questionnaire
Exploring experiences of services provided in the last year of life
RCT comparing postal with interviewer administration of questionnaire (Addington-Hall et al, 1998)
Little difference in response rate
More likely to give positive experiences in postal response but missing data
Focus on patient experience rather than patient satisfaction

5. New Zealand Context
Numbers of people dying in NZ is predicted to increase by 50% over the next 50 years
Estimates that three quarters of these deaths, would benefit from palliative care input
Current service models inadequate to meet demand
Lack of systematically collected data regarding end of life experience
Bereaved whanau/family are the only group that the ADHB does not routinely survey to capture user experience.

6. Adaptation for NZ
Pilot study to test effectiveness of VOICES for Maori and non-Maori
Cognitive interviewing with 20 bereaved family/whanau
Administration in a bi-cultural context is problematic
Structure and content
Scope
Cultural inclusiveness
Recommendation to use a mixed methods approach
Frey, R., Williams, L., Trussardi, G., Black, S., Robinson, J., Moeke-Maxwell, T., and Gott, M. (2016) Views of Informal Carers’ Evaluation of Services (VOICES): Toward an adaptation for the New Zealand bicultural context. Palliative and Supportive Care. doi: /S

7. VOICES – the Auckland experience
Grant from the Auckland Health Alliance Research Fund
Partnership between the District Health Board (DHB) and the University
DHB Executive sponsorship
Governance and translation to practice
Commenced July 2017 due to complete November 2018
Ethics approval from the University of Human Ethics Committee
Approval from Auckland Hospital research committee

8. Database ADHB database of deaths between Nov 2015 – Dec 2016
>18 years
At least one contact with an ADHB service in the year prior to death (admission or outpatient appointment)
4,477 deaths
Next of kin details
Relationship to the deceased
Postal address
Details regarding diagnosis, ethnicity, gender, date of death, place of death (hospital only)

9. Methodology Translated to Maori, Samoan, Tongan and Chinese
English and translated version sent based on ethnicity of the deceased
Letter of invitation with questionnaire(s) and refusal slip included
“not known at this address”, sent to second NOK
Phone call after 3 weeks if no response
Face to face and telephone interviews offered
Contact phone number provided for questions/queries
No inclusions made on cause of death

10. Preliminary results 18% no NOK in hospital records
3,815 questionnaires posted
6% “return to sender”
10% declined with return slip indicating:
Too upsetting
Felt not to be relevant to them
No translated questionnaires returned
653 completed questionnaires (to date)
>100 pages of text

11. Main illness... Not stated – 11.4% (n=86) Cancer – 48.2% (n=303)
Non-malignant – 40.4% (n=264)
Cardiac 14.4%
Dementia 5.4%
Respiratory 5.1%

13. Care at home
73% spent some time at home in the three months prior to death
42% received community nursing (hospice or district nursing)
31% received home help services
9% received no care from services
Family caregiving
46% spouse and 37% adult children
37% spent >40 hours/week providing care at home

15. Place of death Home - 21.6% Hospital - 32.5%
Own home – 20.2% (n=132)
Family/friends home – 1.4% (n=9)
Hospital %
Ward – 25.6% (n=167)
Intensive care – 4.1% (n=17)
Emergency department - 2.6% (n=17)
Ambulance – 0.3% (n=2)
Aged residential care – 28.3%
Hospice – 15.8%
Somewhere else – 1.2%
Not answered – 0.6%

19. Qualitative data – some initial thoughts….
Inflexible health care systems
Transitions to care settings (1)
Services based on eligibility not need
Poor communication
Prognosis/diagnosis (5)
Lack of information
Not listening to patients/families (3)
Relationships with health professionals matter
Other workers in particular (7)
Death with resuscitation (9)
Assisted dying

20. Transition to care settings
“The hospital care was very hard on the whole family. I felt I had to be in fight mode to find out what was going on, what was right for Dad and what help was available. After days of hiding from the Charge Nurse to allow Dad more time to stay in hospital, the sympathy I got when Dad had broken his hip was surreal. The sad thing is it gave us more time to get him the right private hospital. Unfortunately, the effect on Dad really started a quick deterioration from their.”

21. Qualitative data – some initial thoughts….
Inflexible health care systems
Transitions to care settings (1)
Services based on eligibility not need
Poor communication
Prognosis/diagnosis (5)
Lack of information
Not listening to patients/families (3)
Relationships with health professionals matter
Other workers in particular (7)
Death with resuscitation (9)
Assisted dying

22. Communication
“I wished that the final few days were explained better to me, how his life would end and to given that time to digest how to inform the family. We are a close family and we had 3 children so for me to try and prepare myself and them was huge and I was physically sick hours before he died. The staff could have explained more about the ending of hones life. Some help or explanation. I felt overwhelmed, emotionally drained to make massive decisions.”
(died at home with hospice support)

23. Qualitative data – some initial thoughts….
Inflexible health care systems
Transitions to care settings (1)
Services based on eligibility not need
Poor communication
Prognosis/diagnosis (5)
Lack of information
Not listening to patients/families (3)
Relationships with health professionals matter
Other workers in particular (7)
Death with resuscitation (9)
Assisted dying

24. Not listening…
“John had the DNR on his file, we had enduring power of attorney but no advanced care plan. I fought the hospital staff for him to come home to die. I was at odds with nursing staff about his treatment. Had to stand my ground, a decision to not prolong his life had been agreed if he came critically unwell and this happened and we wanted to treat him with comfort and palliative care. They tried to push treatment upon us.”

25. Qualitative data – some initial thoughts….
Inflexible health care systems
Transitions to care settings (1)
Services based on eligibility not need
Poor communication
Prognosis/diagnosis (5)
Lack of information
Not listening to patients/families (3)
Relationships with health professionals matter
Other workers in particular (7)
Death with resuscitation (9)
Assisted dying

26. Relationships
“The health care assistant was wonderful and wish I could remember her name. She assisted me with laying Dad out and was professional and empathic. The tea lady who brought Dad’s tray in with the hope he would sit up and eat was lovely.”
Died in a residential care setting

27. Qualitative data – some initial thoughts….
Inflexible health care systems
Transitions to care settings (1)
Services based on eligibility not need
Poor communication
Prognosis/diagnosis (5)
Lack of information
Not listening to patients/families (3)
Relationships with health professionals matter
Other workers in particular (7)
Death with resuscitation (9)
Assisted dying

28. Death with resuscitation
“You might switch off machines or deal with people dying everyday but at that moment, that’s the first time I’ve watched my parent dying…on a table with blood dripping on the ground. Comments about when are you going to turn it off, we cant wait, when are they arriving were inappropriate and unprofessional. While a patient is being worked on don’t ask next of kin if quality of life is really high enough to warrant keeping her alive”
Died in hospital ED

29. Qualitative data – some initial thoughts….
Inflexible health care systems
Transitions to care settings (1)
Services based on eligibility not need
Poor communication
Prognosis/diagnosis (5)
Lack of information
Not listening to patients/families (3)
Relationships with health professionals matter
Other workers in particular (7)
Death with resuscitation (9)
Assisted dying

30. But…there were many examples of excellent care across all care setting (11)

31. Reflections Translating questionnaires is expensive ?necessary
Mixed methods is important
Administration of questionnaire
Use of quantitative and qualitative data
Completing the questionnaire can be beneficial for participants
Telling their story
Making a difference
Valuing their experience
Multiple bereavements for some people
Research assistant with good communication skills makes a difference