Diarmuid Ó Coimín & Bettina Korn Principle Investigators

HFH Acute Hospital Network Meeting November 21st 2017

Background to this research

• Builds on VOICES (NHS) and National Audit of End of Life Care in Hospitals (2010)

• Underpinned by the National Standards for Safer and Better Health Care & National Health Care Charter and the Quality Standards for End of Life Care in Hospitals

Why survey bereaved relatives ?

Captures the heart of the matter

Good practice

Insight into a population whose voice may not be heard

Relatives are also recipients of end-of-life care

Opportunity to learn & ensure we provide person-centred end-of-life care

VOICES MaJam Research Setting:

• 2 large academic adult hospitals • MaJam: Mater & James’s Hospitals

Dual purpose:• Ascertain the quality of care during last admission • Quality improvement

Surveyed relatives of patients: • Died in our care between 1st August 2014 - 31st January 2015• 3 - 9mths from the time of death

Questionnaire:• Adapted from VOICES (England) - Views of Informal Carers – Evaluation of Services

• 39 questions including 3 opened questions

Results:• 46% response rate = 356 bereaved relatives

Findings

Quality of Care

Meeting Care Needs

Dignity & Respect

CommunicationHospital

Environment

Support for Relatives

Surveying Bereaved Relatives

Relatives told us…

1. The quality of end-of-life care in our hospitals is high by international standards.

2. There are improvements to be made that will enhance end-of-life care.

87% (n=303) rated the overall quality of care as outstanding, excellent or good;

12% (n=41) rated care as fair or poor

Quality of care during

last admission

79% (n=220) agreed that the patients’ pain was relieved either completely all (68%) or most (11%) of the time

9% stated pain was partially relieved2% indicated pain was not managed well

Meeting Care Needs Relief of pain

Emotional support

Hospital Environment –

Single Room

Final days in a room on his own with open visiting for relatives. Great care and attention from nursing staff, doctors and consultants.

She died on the ward at 2am, so as we gathered we had to be fairly quiet so as not to disturb the sleeping patients. It would have helped if she had been in a room on her own.

During the day, when mam was in effect dying I found it hard to hear other peoples visitors laughing and hoovers going , cleaners shouting etc… We were really hoping that we could have a private room. 2 hrs before mam died, we moved into a 2 bedded room. It was better than being in the 6 bedded ward but still far from ideal. Not only for us, but for the poor woman who mam had to share with. I was grateful that mam died at midnight and the lady was asleep and the place was quiet and mam had a most beautiful death. … I think it should be a priority that there is a private room for patients & family to go to die. EVERYONE DESERVES THAT.

Hospital Environment –

Single Room

Availability of a family roomHospital

Environment -

Family Room

Hospital Environment -

Family Room

Overnight stay

Bereavement evenings

Bereavement evenings

Quality of Care

On balance, do you think your relative died in the right place?

Earlier conversations with patients and their families about advance care planning and end-of-life care preferences.

Improvement in communication to patients and their families relating to the progression of illness and dying.

Admission for terminally ill patients directly to wards bypassing the Emergency Department.

Timely help with meeting care needs.

Relatives recommended

Family rooms on hospital wards to enhance communication and care experience.

Standardised bereavement practices including the provision of information leaflets and access to bereavement support.

Care in a single room in the days before a person dies.

Flexibility in visiting times, the availability of specialist palliative care to manage pain and other symptoms and access to the mortuary at weekends.

Relatives recommended

Surveying bereaved relatives by all hospitals and healthcare settings to ascertain the quality of end-of-life care and support quality improvement.

Healthcare staff participation in education programmes to enhance their skills and knowledge on care at end of life.

Research recommends

So … What are we doing about what relatives told us?

Reviewing policies & practices e.g.

• Access to the Mortuary out of Hours • Visiting times• Bereavement care

Data reporting e.g. deaths in single room

Advance care planning

An example – Coronary Care Unit (CCU)

“There was no family room available for us.

We sat outside on the wooden chairs by

the lift outside CCU, we watched the crash

teams go down the corridor only for the

nurse to redirect them to mam’s room we

also watched as the chaplain went in & then

left”. (p.87)

“The consultations about the condition of the

patient were very informative. We did not like

the fact that the consultations were held in

the corridors, this was not the best or most

comfortable place but the doctors could only

use what space was available”. (p.87)

CCU Family Room before and after refurbishment

Overnight stay

Overnight room

Family facilities in ICU

Family Meeting Room

Provision of Information

Relatives suggested the provision of information on :• ‘what to expect when someone is dying’• ‘how to talk to their relative about dying’• What happens after death• Bereavement care

Photo of information stand

Concluding comments

1. Bereaved relatives rated the overall quality of care as high.

2. Report outlines what is important in the provision of good end-of-life care.

3. Results and recommendations have the potential to inform quality improvement in hospitals and other healthcare settings.

VOICES MaJam Research Team

Ms Bettina KornMr Diarmuid Ó Coimín

Dr Sarah Donnelly Dr Geralyn HynesMs Geraldine Prizeman Ms Margaret Codd

AcknowledgementsWe would sincerely like to ‘Thank’ all relatives who responded and…

Ms Mairead Curran

Report Available on following link :

Survey of Bereaved Relatives: VOICES MaJam

Or on LENUS