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 jrobinson@adhb.govt.nz

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 https://www.southampton.ac.uk/voices/index.page

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.

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:10.1017/S1478951516000146

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

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)

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

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

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%

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

Place of death Home - 21.6% Hospital - 32.5% Own home – 20.2% (n=132) Family/friends home – 1.4% (n=9) Hospital - 32.5% 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%

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

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.”

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

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)

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

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.”

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

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

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

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

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

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

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