A4 - Community Practice
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Hospice at home (Hospice@Home). A journey with hospice Mid-Northland Jenny Coleman and Deb Yarrall
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A4 - Community Practice
- 1. Hospice At Home (H@H) A Journey with Hospice Mid-Northland Deb Yarrall and Jenny Coleman
- 2. Overview Hospice Mid-Northland History of respite beds New initiative Evaluation of initiative Where to from here?
- 3. Our Bus “ Coffin Dodger ”
- 5. Paris? Paris
- 8. Rome? Rome
- 9. The Caribbean? The Caribbean
- 10. Northland Cape Brett Lighthouse, Bay of Islands and The Treaty Grounds, Waitangi 10
- 11. He aha te mea nui o te ao? What is the most important thing in the world ? He tangata He tangata He tangata It is people, it is people , it is people
- 12. 12 Far North Community Hospice Hospice Mid-Northland Hospice Kaipara North Haven Hospice
- 13. Hospice Mid-Northland Respite unit with two beds Survey of the community 2011 In-depth review of the unit 2012
- 14. The Outcome Florence Nightingale at the end of her life - at home 14
- 15. A Fork in the Road
- 16. Preferred Place of Care WHAT WE HEAR: Most people want to die at home A patient's home in the bay
- 17. Preferred Place of Care WHAT IS ACTUALLY TRUE: Most people in NZ (22%) do not die at home (PCC, 2011) however 2003-2007 65% of HMN patients died at home 2007-2014 69% of HMN patients died at home (Palcare stats)
- 18. Therefore
- 19. Hospice@Home Respite care in the home 72 hours Registered nurse or caregiver To reduce risk of carer burden and to assist with medication management Based on a full assessment (HMN H@H Policy, 2012) The rural roads of Mid-Northland
- 20. What Else Does the Literature Say? Themes: Less dying in hospitals/ in-patient facilities and more in community settings/in homes Timely support A high level of care Economically sustainable Reduce caregiver burden Purerua Peninsula
- 21. Carer Burden ‘relatives of patients cared for in a late palliative phase suffer from great fatigue and require more attention, both scientifically and in the clinical setting’ (Carlsson, 2010, p.1 Local innovation for a high needs patient at home
- 22. What is happening in NZ? HNZ Quality Group Lake Taupo Hospice Northhaven Hospice Waipuna Hospice Hospice North Shore Hospice Tairawhiti
- 23. Time to Stop and Look at the View Tauranga Bay, Northland
- 24. How Are We Doing? Hours Staff – RN or CG Mileage Timing Ease of organising Support of families and H@H staff (HMN H@H Policy 2012). Te Tii Bay, Paihia
- 25. Outcomes – Audit 1 (Jan-July 2013) 10 families/230 hours All nights except one episode 72 hours never used Half RN and half CG
- 26. Outcomes – Audit 1 Timing was appropriate Mileage varied but is significant Not easy to arrange Families and H@H staff felt supported
- 27. Outcomes – Audit 2 (Aug 2013 to July 2014) 15 Families/498 hours (135 ACC funded) 26% Maori families 72 hours used only once (and ACC funded) All nights except on two occasions 370 RN hours and 128 CG hours Te Haumi Flat, Paihia
- 28. Outcomes – Audit 2 Timing appropriate Mileage remains significant Easier to arrange Families and H@H staff felt supported Our Coffin Dodger with his fish!
- 29. We get all kinds of families
- 30. “It wasn’t expected but gratefully received and the nurse was lovely, but I would’ve liked an IPU in the Mid-North.” “Gave carer a break, willing to stay, being Maori was excellent” “Being able to sleep” “The reassurance and peace of mind.”
- 31. Palliative Care Team Comments The HMN Palliative Care Team, 2014
- 32. H@H Staff Comments Not even a road this time!
- 33. Conclusions PROS Relieved carer burden Timely manner Enabled patients and families to remain at home BUT It’s not always easy to arrange ? Economically sustainable People still need choice about their PPC
- 34. The way ahead is hazardous
- 35. And conditions challenging The Winterless North!
- 36. We hope we are not on borrowed time….. The front of the Coffin Dodger's vehicle
- 37. Where to from here? Funding Partnerships – eg ◦ Local Hospitals ◦ ARC ◦ Maori Health Providers ◦ Home Support Agencies ◦ Private Agencies Some signposts are from last century
- 38. Proceed with caution Case by case basis Limited budget
- 39. Onward….. Kua tawhiti ke to haeranga mai, kia kore e haere tonu He tino nui rawa ou mahi, kia kore e mahi nui tonu. You have come too far, not to go further You have done too much not to do more. Ta Himi Henare Ngati Hine 1989
- 41. Appendix 1 (Audit Tool Jan-July 2013)
- 42. Appendix 2 (Audit Tool Aug 2013 to July 2014) Patient Demographic Hours RN/CG Mileage km Timing appropriate? Policy Followed? Did the team find it seamless to arrange? Did the H@H nurses feel supported? Did the family gain relief and support Pt 1 NZE 2x 12 CG N/A Yes Yes Yes Yes Yes Pt 2 Maori 1x 12 RN 76 Yes Yes Yes N/A N/A Pt 3 * NZE 9x 12 RN 192 Yes Yes Yes Yes Yes Pt 4 NZE 1x 10 RN 85 Yes No No Yes Yes Pt 5 * NZE 1x8 2x9 2x10 RN 60 Yes Yes No Yes Yes Pt 6 NZE 4x 12 RNx36 CG x12 256 Yes Yes No Yes Yes Pt 7 NZE 2x 4 day 2x 12 day 1x 12 night CG x20 RN x24 Yes Yes Yes Yes Yes Pt 8 Maori 1x12 1x 7 1x 10 RN N/A Yes Yes Yes Yes Yes Pt 9 NZE 2x 12 1x3 RN N/A Yes Yes Yes Yes N/A Pt 10 NZE 4x12 CG 288 Yes Yes Yes Yes Yes Pt 11 NZE 4x12 RN Yes Yes No Yes Yes Pt 12 Maori 1x12 CG 170 Yes Yes No N/A Yes Pt 13 NZE 1x 12 1x 14.5 1x 3.5 RN N/A Yes Yes Yes Yes Yes Pt 14 Maori 1x 4 –eve 3x 2 - eve CG 24 Yes No No Yes Yes Pt 15 NZE 1x 2 -day CG 22 Yes No Yes Yes Yes Totals 11x NZE 4x Maori 498 128 CGh 370 RNh 100% 80% 60%
- 43. References Butler, C., and Holdsworth, L. (2013). Setting up a new evidence-based hospice-at-home service in England. International Journal of Palliative Nursing. (19) 7. 355-359. Retrieved from Proquest Central Database. Carlsson, M.E. (2010). The significance of fatigue in relatives of palliative patients. Palliative and Supportive Care. (8). 137-141. Retrieved from Proquest Central Database. DeMiglio, L., and Williams, A.M. (2013). A qualitative study examining the sustainability of shared care in the delivery of palliative care services in the community. BMC Palliative Care. (12). 32. http://www.biomedicalcentral.com/1472-684X/12/32 Retrieved 20 August 2014 Howell D, et al. (2011). A shared care model pilot for palliative home care in a rural area: impact on symptoms, distress and place of death. Journal of Pain and Symptom Management. (42) 1. 60-74. Retrieved from Science Direct. Hospice Mid-Northland. (April, 2012). Hospice Mid-Northland Inpatient Review. Hospice Mid-Northland. Hospice Mid-Northland. (November, 2012). Hospice Mid-Northland Hospice@Home Policy. Hospice Mid-Northland.
- 44. References Hunt, K.J., Shlomo, N., and Addington-Hall, J. (2014). End-of-life care and achieving preferences for place of death in England: results of a population-based survey using the VOICES-SF questionnaire. Palliative Medicine (28). 412- 421. Retrieved from Sagepub August 21 2014. McNamara, B., and Rosenwax, L. Factors affecting place of death in Western Australia. (2007). Health and Place. (13). 356-367. Retrieved from Elsevier. Ministry of Justice. (1993). The Privacy Act. Wellington, New Zealand. Retrieved from www.legislation.govt.nz/act/public/1993/0028/latest/DLM297038.html Munday, D., Dale J., and Murray S. Choice and place of death: individual preferences, uncertainty, and the availablity of care. (2007). Journal of the Royal Society of Medicine. (100). 211-215. Retrieved from NCBI Database. Nursing Council of New Zealand. (2012). Code of conduct for nurses. Wellington: Nursing Council of New Zealand.
- 45. References Sheppard, S., Wee, B., & Straus, S.E. (2012). Hospital at home: home-based end of life care (Review). Retrieved October 3, 2013, from The Cochrane Library: The Cochrane Collaboration. Published by John Wiley & Sons Ltd. Te TaiTokerau PHO. (2008-2013). Te Tai Tokerau Maori Health Strategic Plan. Te Tai Tokerau PHO. The Palliative Care Council of New Zealand. (2011, June). National Health Needs Assessment for Palliative Care. Phase One Report: Assessment of Palliative Care Need. Retrieved August 20, 2013, from Cancer Control New Zealand: http://www.cancercontrolnz/govt.nz/sites/default/files/Needs%20Assesst%20Re port.pdf Williams, A-L., and McCorkle, R. (2011). Cancer family caregivers during the palliative Hospice, and bereavement phases: A review of the descriptive psychosocial literature. Palliative and Supportive Care. (9) 315-325. Retrieved from Proquest Central Database.
- 46. References Wye, L., Lasseter, G., Percival, J., Duncan, L., Simmonds, B., and Purdy, S. (2014). What works in ‘real life’ to facilitate home deaths and fewer hospital admissions for those at end of life?: results from a realist evaluation of new palliative care services in two English counties. BMC Palliative Care. (13). 37. http://www.biomedcentral.com/1472-684X/13/37. Retrieved 20 August 2014.
Editor's Notes
- Ata Marie The focus of the conference this year is on engaging with our communities Deb and I would like to highlight how our service attempts this engagement to ultimately support patients whose Preferred place of care is home
- This is an overview, or a map, or our journey that we are embarking on today We will show you where we are in NZ, talk a bit about the history of the service we provide, introduce the new initiative, H@H and show our evaluation of it to date. Then we will look at where we take it from here. I’d like to point out that what we share today is not new, it is not rocket science , it is however of crucial importance when we consider honouring a persons preferred place of care and planning for the future. Along the journey you will see some images from our Mid-Northland Community, photos taken by our clinical team on their travels to see the people we care for.
- ….every journey needs a great vehicle…………this bus is courtesy of a patient of ours who travelled NZ recently
- Our journey begins…….
- AAHH …..
- OOPs deb , did we load the wrong ones, these are your holiday snaps
- Just bear with us …sorry
- Ah thats better, closer to home ……..welcome to northland
- Our journey into Northland commences with a familiar whakatauki………for our overseas visitors this is a maori proverb that reflects the thoughts , values and advice of past generations And this whakatauki must be at the for front of the care we provide
- Hospice Mid Northland………. Our little slice of the north, stretches coast to coast and touches Taupo Bay in the north and Towai in the south This area houses a pop of 40,000 people. 40-45% Maori (which is also a refelection of the percentage of Maori who HMN cares for), our service cares for approx 50-60 patients at any one time We are a community based service , patients and families/whanau have 24/7 access to care with the closest IPU being in Whangarei , over an hour south. It is rural locality with some of the worst roads in NZ…….the clinical team travels over 6000km a month. As you can see from the slide we are one of 4 hospice services within the north, some of our lovely colleagues being in the audience today
- For a number of years our service had 2 respite beds in our building that was attached to an aged care facility These beds weren’t funded , they were costly to run , and were under utilsed with an average of only 12 people using them in one calendar year In 2011 the community was surveyed as to what their needs were and an independent review of the respite beds was undertaken in 2012 .
- 95% of the patients and families surveyed at this time wished to be cared for at home. This photo is clearly not of northland, but is of Florence Nightingale being cared for at home at the end of her life The outcome of the review of the community and our service saw the closure of the respite beds and resources placed elsewhere
- What next? Without the respite unit, how would be best serve our community? Questions arose? In particular this issue of preferred place of care – what does that mean?
- Where is ‘home’?
- The Palliative Care Council show that in the preceding four years to 2011, only 22% of people died at home, however the figures from our service are quite different as you can see from the slide, with up to 69% in the period of 2007-2014. The literature advocates that ‘choice’ means that a range of high quality options are available to choose from and that home might mean an IPU or an aged care facility. And that these choices may change throughout a persons care
- Home is where the heart is but for the majority of the patients on our service at this time this meant a place that gave them meaning, their house, their land Therefore we needed to provide better support for these patients and their families. Options for this increased nursing support in our area relies heavily on family availability or having the funds to pay private agencies, in our area of high deprivation this isn’t an option that many have. Our solution was H@H Respite Nursing.
- H@H was established in November 2012 as a pilot programme, following research of the literature and what other services were currently doing, including information from St Josephs Hospice in the UK, and trends showing a thrust towards more community based care of the dying, overseas and in NZ. Parameters were put in place in terms of aim, assessment and economics. The over riding aim was to offer an increased level of support to reduce caregiver burden Resources saved through the closure of the respite beds were utilised and a potential 72 hours per patient was considered economically viable. A pool of 16 casual Rn’s and caregivers were employed. The high response to the advert was unexpected, but the casual positions suited many applicants. Interestingly a number of practice nurses wished to be included in this part of their patients journey and joined the casual team A 2 day induction programme covered aims and philosophies, highlighting risk management , staff safety, manual handling, infection control and 3 of the HNZ fundamentals of PC modules Then we continued to investigate the literature to ensure a quality service was being offered.
- Recurring themes were highlighted in the literature Health care strategy worldwide is towards less people dying in hospital/inpatient facilities and more towards support for people dying in community settings/at home The support needs to be timely - The care needs to be of a high level - The care needs to be economically sustainable – it is a good idea in principle, but the funding and an effective infrastructure is vital The theme highlighted most was being able to reduce Caregiver burden or fatigue.
- A further word about carer burden. Relatives caring for loved ones at the end of life preferred respite in the home, so they could be near their loved one, that being away from them increased anxiety. BUT the literature shows and I’m sure you’ll all be aware, burden and fatigue are a by product of this increased level of support and caregivers are at an increased risk of physical and mental morbidity. Armed with this information we felt we were on the right track. This photo might not look as if it has anything to do with carer burden , although this walkway was built by a family to enable them to get a wheelchair bound man from his sleepout to the main house……highlights what some families deal with and the troubleshooting they do…….the ACC funded ramp in the background was delivered a week before he died…and the family had given up waiting for it …hence the ramp, at consdierable expense
- We looked around NZ at other services to see what others are doing in terms of providing hands-on care at home This was via the HNZ quality network and we’d like to thank the following services for their feedback The services reviewed , offer or have offered similar support , all face the same resource issues of staffing and funding Our H@H respite nursing service was born and care was implemented and delivered effectively. However on any great journey its important to Stop and look at the view …….I’ll hand over now to my colleague Deb
- After the first six months of H@H, I chose to audit the HMN H@H policy for my postgraduate certificate at Whitreia NZ. Subsequently we have undertaken a second audit to continue to evaluate progress.
- Based on the themes of reducing carer burden in a timely manner with a high level of care which is economically sustainable, KPI were developed pertaining to what we wanted to evaluate about the service – ie How many hours of H@H, delivered by RN or CG, what was the mileage like, how was the timing, how easy was it to organise and were the families and H@H staff supported? An initial audit was undertaken after the first six months of the service being provided, we initially looked at January to July 2013. A second audit was recently undertaken, evaluating the service from Aug 1 2013 to July 31 2014.
- This time we looked a little at the demographics and found that 26% of the families who used H@H in these 12 months were Maori. As discussed earlier 40-45% of our patients are Maori so this would seem to be quite a high percentage given that many of our Maori families in the North do appear to gather and support each other in times of need. Is this further reflection of the fragmentation of families which seems to be the case in our society today?
- Please note our coffin dodger continuing on his journey, with his fish.
- Having the caregiver was fantastic, she had a lovely bedside manner and sat up chatting to N into the night I needed the support but I missed being with my husband that night Feeling that there was someone that knew more than what we did, the support and not having to make the decisions.
- it wasn’t expected but gratefully received and the nurse was lovely, but I would’ve liked an IPU in the mid-North Gave carer a break, willing to stay, being Maori was excellent Being able to sleep – this was a common thread, most of the family carers mentioned this. The reassurance and peace of mind.
- PCT comments: Not always easy to find someone to do H@H It’s not always easy to convince a family this is something they would benefit from There is a lot of work to organise it Introducing the CG/RN to the family can problematic When you are on call it’s fantastic to have the H@H in place for a complex patient – they have access to the notes via a laptop or ipad – or printed paper notes The gratitude and relief of the families has made it worth it
- 12 hours is too long and it’s hard to stay awake The families are just lovely and I feel very privileged to be with them It was evident the families could recharge the batteries Sometimes I’m not sure what I should be doing if a family is very hands-on Take some food and fluids if you don’t want to wake the family up.
- The H@H service relieved carer burden, most especially at night, at the right time, for the families who used it. It appeared to enable patients to stay at home and not need to be transferred to hospital or to an inpatient unit. However, it is not always easy to arrange – although this is getting easier. There are issues about sustainability and funding it long term, however we believe it is cost effective in that it is not an overwhelming number of families who have a need for this service, as we thought it might have been when we initially piloted it. Plus we do acknowledge that people still need a choice about their preferred place of care, or death, and sometimes that choice may be an inpatient facility of some kind.
- So, the way ahead in our journey is a little uncertain, and a little hazardous.
- And conditions challenging
- We really hope we are not on borrowed time.
- So where to from here? We are looking at funding options to ensure the sustainability of this service. In terms of respite outside the home, our Hokianga patients can access respite at Rawene hospital and we are working to strengthen a similar partnership with BOI hospital. Patients and families can also access respite via normal channels in ARC. For patients who wish to remain at home, we are getting better at assessment and conversations – ACP – about who is going to provide care for them at home when they no longer can, or their family cannot. We are flagging the ones who we think are under-resourced and with them we help them explore all their options, such as increased home support via the home support agencies and Maori Health Providers. For some families the H@H service is invaluable and they benefit greatly from it.
- For now H@H is a ‘go slow’ case by case assessment. In this environment where the focus is back into the community, towards caring for people outside of inpatient facilities, we feel it is imperative to be able to provide this increased level of support at home. However, perhaps we should not be the providers of it, but rather the co-ordinators.
- So…………… Thank you for sharing our journey, and our service’s experience of providing H@H, the vistas as well as the road blocks and pot holes. We hope we are not at a dead end and can continue onward. We leave you with this quote from a notable Kaumatua from our place in NZ.