Spiritual Care Australia Conference 4 th – 7 th May 2014

1. Spiritual Care Australia Conference 4th – 7th May 2014

2. Evaluating a Bereavement Service Francene Ball St John of God Subiaco Hospital Western Australia. Researchers: Janie Brown (SJGSH & Curtin University) Dr Jennifer Gardner (SJGSH) We wish to acknowledge the funding from WA Cancer and Palliative Care Network

3. Spiritual Care Australia Introduction and Context St John of God Subiaco Hospital Western Australia

4. Introduction/Context The St John of God Subiaco Hospital Bereavement Service set up July 2010. Relatives of dying patients are offered a range of services: • a review of the death by the multidisciplinary team with • informal identification of family members at risk of complex bereavement, • a card sent within one week of death to the next of kin, • a follow up phone call approximately 6 weeks after the death, • the offer of one session in Pastoral Services or referral to a community agency, • an invitation to a Memorial Service in the hospital chapel and • the inclusion of the patient’s name in the Hospital Chapel Memorial Book

5. Research aims 1. To evaluate the impact of St John of God Subiaco Hospital Bereavement Service on the next of kin of deceased patients; 2. To identify which strategies used in the Bereavement Service are experienced as most helpful and supportive by the bereaved; 3. To identify any additional strategies that next of kin may require from the service to support them.

6. Methodology / Method • Qualitative methodology- semi-structured focus groups. • The cohort for the study included all identified next of kin of adult patients who died in the hospital in 2012. • Data collected from n=17 participants (14 female and 3 male). Majority were partners, 3 were adult daughters of the deceased. • Transcribed interviews were analysed using thematic analysis (Braun & Clarke, 2006; Loffe & Yardley, 2003; Vaismoradi, Turunen, & Bondas, 2013).

7. Results The analysis identified 3 major themes in the data: 1. Grief is a unique experience; 2. Revisiting the hospital; and 3. Bereavement care experiences.

8. Grief is a unique experience The very personal and difficult nature of grief and their varied experiences and needs in their grief. I know people are different in grieving and I will never stop grieving…each individual person is different.(FG3/P2) I guess it’s each individual thing…you know you need help but you don’t know what it is you need.(FG3/P1) What was helpful to one may not have been helpful to another. I thought the way it fell out it was just the right distance. Because it wasn’t too soon. If it had been a couple of weeks later …(FG1/P5) The difficulties experienced around the time of the death and subsequently. All of a sudden there’s someone telling us you’ve got to arrange a funeral and I’m thinking I can’t do this…if you haven’t got family it must be horrendous. You are in a dream.(FG4/P3)

9. Revisiting the hospital Two divergent views: For me there's a sense of comfort here. I worked here, I was born here, my husband was born here, he died here and the whole process of him going through cancer ... I just felt comfortable. (FG2/P2) I wouldn't come back for anything I felt I didn't need to. No, I wanted to stay right away. I mean I only live 3 minutes away. I frequently drive past and each time I don't like it. Then last week I came to the dermatologist. It was awful. (FG1/P2) • Example

10. Bereavement care experiences The existing elements of bereavement support (sympathy card, phone call and memorial service invitation) were consistently praised for their value. None of those upset me at all, and I found comfort in all of them and it was nice to have the follow up. (FG1/P4). As indicated in the theme “Revisiting” some participants were unable to return to the hospital for the memorial service. It’s too close, it’s too raw. (FG3/P2)

11. Bereavement care experiences • Participants reported of staff: The nurses, the doctors, constant support, they were all so good. They were fantastic. Really good. (FG1/P4) Every single step of the way, the support from the hospital, the nursing staff, you could not fault it in any way. The kindness and the way they treated us after he died in the hospital was just second to none. I could not praise them enough. They were just so kind and gentle with us. (FG3/P4) The ability to sleep in the hospital was critical for me. Absolutely critical. For me I would have suffered like hell not knowing that I wasn't there. I only had 6 weeks, less than that in hospital. And if I hadn't had been able to sleep there with her I would have been shattered. But what is means for the hospital, if you want to know what services they provide, to me that was the most critical thing they provided.(FG3/P1) • Of the Pastoral Practitioner: She had very practical advice. She said get yourself a notebook to carry in your bag because there are so many things you are going to have to do and you won’t be able to remember it … She was very, very good with lots of practical things like that made such a difference. (FG1 / P1)

12. Bereavement care experiences Support for the bereaved was non-religious despite it being provided by the Pastoral Services Department. I thought any pastoral care and anyone you spoke to was going to spruke religion to you. Because of dad I was like oh! And there's nothing wrong with religion - I'm Catholic. It was more Dad’s wishes. I didn't want to upset Dad. But once I started to talking to them, I realised they weren't trying to do that and I think maybe if there was a way that that could be communicated, if I had known that, I might have chatted to someone a little bit earlier. (FG2/P3) The integration of the pastoral staff in the clinical team. The other thing I really liked was that obviously everyone talked to each other, so the medical staff and the pastoral staff obviously integrated.(FG1/P1)

13. Three tiered model of bereavement care Selective referral All bereaved individuals and families All palliative care patients and families

14. Limitations • Revisiting the hospital can be difficult for the bereaved– participants in the study may not represent all people who have experienced bereavement. • The participant group did not include bereaved parents or bereaved children less than 18 years of age. • Finally this study was confined to one site and one service.

15. Recommendations The existing range of bereavement services remain in place with modifications • The card is personalised; • The phone call is modified to pre-empt the letter regarding the memorial service, and that Pastoral Services look at ways of maximising the effectiveness of the phone call to the bereaved; • The brochures and the time at which this information is given are reviewed. Exploration of • the possibility of referral to a specific Support Group • ways in which support could be offered to the bereaved experiencing difficulties revisiting the hospital and • an opportunity for bereaved relatives to provide feedback.

16. Conclusions • The Bereavement Service at St John of God Subiaco Hospital is experienced as useful and helpful by the bereaved families of patients. • Three additional strategies were identified that may be helpful to the bereaved. • Support group +/- feedback mechanism +/- support to revisit the hospital • Bereaved individuals and families experience grief in a unique way. Assumptions should not be made about individual’s needs and reactions. • For the families of dying patients, the care that they receive from hospital staff both prior to and after death is perceived as very important and may contribute to their individual healing as they move through their grief.

17. Revisiting Strangling the letter about research into bereavement services between two shaky fingers and feeling faintly ridiculous I stepped into the hospital like an elephant with a maharaja of emotion Piled on its back, swayed slightly.

18. Revisiting - cont And had to keep moving. The worn blue carpet still felt firm underfoot. The doors still slid open easily, All the colourings were subdued And evening light poured into the pastel foyer. Almost two years since I said goodbye, I would never come here again.

19. Revisiting - cont Drawn as by an unspoken angel I walked out of my way past the oncologist’s room, the palliative care doctor’s room, their names still engraved on the frosted glass. Others fill their waiting rooms now, waiting…

20. Revisiting - cont The corridors looked serene and everything was as it had ever been except that I swayed and stumbled for the one thing that was so new;

21. Revisiting - cont that you were no longer here and no longer knew.

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