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
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)
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
ârelatives of patients
cared for in a late
palliative phase
suffer from great
fatigue and require
more attention, both
scientifically and in
the clinical settingâ
(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 â 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 â 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 â Audit 1
Timing was appropriate
Mileage varied but is significant
Not easy to arrange
Families and H@H staff felt supported
27. Outcomes â 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 â Audit 2
Timing appropriate
Mileage remains
significant
Easier to arrange
Families and H@H
staff felt supported
Our Coffin Dodger with his
fish!
30. âIt wasnât expected but gratefully received and
the nurse was lovely, but I wouldâve liked an
IPU in the Mid-North.â
âGave carer a break, willing to stay, being
Maori was excellentâ
âBeing able to sleepâ
âThe reassurance and peace of mind.â
33. Conclusions
PROS
Relieved carer burden
Timely manner
Enabled patients and
families to remain at
home
BUT
Itâs not always easy to
arrange
? Economically
sustainable
People still need
choice about their
PPC
36. We hope we are not on
borrowed timeâŠ..
The front of the Coffin Dodger's
vehicle
37. Where to from here?
Funding
Partnerships â eg
⊠Local Hospitals
⊠ARC
⊠Maori Health
Providers
⊠Home Support
Agencies
⊠Private Agencies
Some signposts are from last
century
39. OnwardâŠ..
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
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 âeve
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 âreal lifeâ 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.
Hinweis der Redaktion
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.
Iâd 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.
âŠ.every journey needs a great vehicleâŠâŠâŠâŠthis bus is courtesy of a patient of ours who travelled NZ recently
Our journey beginsâŠâŠ.
AAHH âŠ..
OOPs deb , did we load the wrong ones, these are your holiday snaps
Just bear with us âŠsorry
Ah thats better, closer to home âŠâŠ..welcome to northland
Our journey into Northland commences with a familiar whakataukiâŠâŠâŠfor 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 NorthlandâŠâŠâŠ. 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 NZâŠâŠ.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 werenât 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 â what does that mean?
Where is âhomeâ?
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 âchoiceâ 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 isnât 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 Rnâs 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 â 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 Iâm sure youâll 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 houseâŠâŠhighlights what some families deal with and the troubleshooting they doâŠâŠ.the ACC funded ramp in the background was delivered a week before he diedâŠand the family had given up waiting for it âŠhence 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 weâd 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 âŠâŠ.Iâll 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 â 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 wasnât expected but gratefully received and the nurse was lovely, but I wouldâve liked an IPU in the mid-North
Gave carer a break, willing to stay, being Maori was excellent
Being able to sleep â 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
Itâs 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 itâs fantastic to have the H@H in place for a complex patient â they have access to the notes via a laptop or ipad â or printed paper notes
The gratitude and relief of the families has made it worth it
12 hours is too long and itâs 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 Iâm not sure what I should be doing if a family is very hands-on
Take some food and fluids if you donât 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 â 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 â ACP â 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 âgo slowâ 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.
SoâŠâŠâŠâŠâŠ
Thank you for sharing our journey, and our serviceâs 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.