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Review December 2010

19th Hospice NZ Palliative Care Conference; What a success! Thank you to the 350 people - delegates, speakers, exhibitors and sponsors who attended the November conference at Te Papa in Wellington. All feedback indicates that the conference was a magnificent success and delegates came away feeling validated, motivated and inspired.

A huge thank you to our international key note speakers who so willingly and openly shared their knowledge and experience with us - Eugene Murray, Dr Bee Wee and Prof Donna Wilson. Thank you also, to our New Zealand keynote speakers - Prof Merryn Gott, Dr Vanya Kovach, Dr Mason Durie and the particularly memorable (for his wonderful singing voice) Dr Ben Gray. Thank you to Professor Rod MacLeod who set the tone for the conference with the inaugural Sir Roy McKenzie Guest Lecture on the nature of caring. Reminding us all that who we are as people, and our life experiences greatly influence how we care for others in our roles with hospice - and that caring is and should be at the heart of everything we do.

In This Issue: Message from Mary............. 2 A selection of photo’s from Conference welcome function and dinner............ 3 Benchmarking begins in New Zealand hospices......... 4 The Kia Ngawari study........ 6

Thank you also to Steve Joll for being a marvellous “captain” for our dinner and the Soul Sista’s for such a wonderful night of dancing and fun.

Sleep dreams of

Thank you also to our sponsors - without you we would not have been able to provide such a wide and varied programme with such high calibre speakers. Particularly Mundipharma NZ Ltd, The Ministry of Health, The Wellington City Council and our long standing friends at Dilmah.

Educator uses latest

Please turn to page 3 to enjoy a selection of photo’s from Conference welcome function and dinner.

Palliative Patients................ 8

technology to widen her reach............................. 9


Kia Ora Season’s greetings! As we approach the end of 2010 there is an opportunity to reflect on the year and its highlights. A real standout for me, the Hospice NZ Board and team, is the progress we have made working alongside our members and the wider healthcare sector, in relation to the Ministry of Health contracted projects on education and standards. In 2009 the Ministry of Health (MOH) and Hospice New Zealand (HNZ) considered the results of a national stock-take into service provision. Nationally, there were two areas of need that required our focus; Mary Schumacher CEO Hospice NZ

• The need for nationally consistent education programmes that support generalist palliative care providers. • The need for revised palliative care standards and an ongoing implementation programme to ensure consistency in the quality of service regardless of locality.

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December 2010

Following 10 months of concentrated work on the two projects, a selection of education resources and the draft Standards were released for consultation on October 4th. A series of seven workshops around the country provided members and interested groups with an opportunity to feedback and ask questions. We thank everyone who took the time to participate in this valuable exercise. Looking forward to 2011, milestones include the development of a Standards Audit framework and further development and piloting of the education packages. The outcome of both projects will improve the quality and equity of palliative care services available to people and their families, regardless of the care setting. Outside of the projects, several achievements from 2010 stand out for me – our Conference which has already received special mention Palliative Care Lecture Programme – now in its 8th year, the series has attracted 3027 participants to the 10 lectures given during 2010, an avg per month of 302 participants – 2009 average per month was 250. BNI Scholarships – during 2010 Hospice NZ awarded 11 scholarships to member hospice staff members. Scholarship purposes included supporting nurses through post grad training, supporting a fundraiser to attend a conference and bereavement and spirituality training. National Partnerships – during the year we were delighted to confirm that hospices nationally will continue to work alongside House of Travel, Craigs Investment Partners and BNI to raise funds and awareness in various ways throughout the country. Looking forward to 2011, we have an ambitious but realistic work plan ahead of us, all our efforts will continue to be focused on our vision, that anyone who is dying has the opportunity to celebrate their life with the help of hospice.

Warm regards for a relaxing and enjoyable summer season.

Mary Schumacher Chief Executive Hospice NZ Disclaimer: Unless otherwise stated, images used in this publication are not related to people/person’s mentioned in the articles. They are purchased from a Photo Library with full model releases from all involved.

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19th Hospice NZ Palliative Care Conference

Navigating the Journey 9-11 November 2010, Te Papa, Wellington, New Zealand

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Benchmarking begins in New Zealand hospices Many hospices have been able to plan with greater ease this year, thanks to the introduction of a pilot benchmarking programme. Hospices are already making improvements based on the results of the pilot programme, developed by Hospice New Zealand and Australian company QPS. Hospice NZ CEO Mary Schumacher says hospices identified benchmarking as a critical area for future development in 2008. “It’s a new project which has required commitment and effort from the hospices and we really appreciate that,” says Mary. Hospice NZ worked with QPS, which has experience in benchmarking in aged care and other health settings, to set 43 key performance indicators (KPIs). Each quarter, participating hospices collected information and submitted the data to QPS online. QPS collated the data and presented it to the hospices in a report, allowing each hospice to compare its performance to others in the programme. QPS held a teleconference to talk about the reports and the data collection process. Karen Andersen, CEO of Hospice Wanganui, says they were already collecting a lot of the data they needed for the benchmarking programme to send to the Ministry of Health. Benchmarking has allowed them to view that data in a useful format, she says. Hospice Wanganui have been able to compare its performance with other hospices and see areas for improvement. “Benchmarking can be used as a carrot or a stick, I see it being used as a carrot for hospices. It opens doors to opportunities for improvement,” says Karen. Staff and the Board of Hospice Wanganui have been really interested in the results and were pleased with their progress, she says. The results have validated some of their perceptions. The hospice has a high number of referrals from GPs in relation to other hospices - which Karen reads as being an indication of respect for the hospice within the community. The programme has allowed Hospice Wanganui to think about how it could collect and record data more accurately. For example, the first quarter’s data showed it had no referrals from oncologists. There were actually referrals, but because others within the oncology department were handling them they weren’t being recorded as such. “We didn’t have any self-referrals showing, which didn’t quite reflect what was happening - patients were referring themselves but we then contacted their GP and so the GP was listed as the referrer.”

Analysis of the data has encouraged the hospice to look at operations from a different angle. Hospice Wanganui has a lot of volunteers compared to other hospices. “We saw that as really positive. However during a teleconference, the QPS consultant said they saw that as quite a risk.” The hospice will now consider that during their strategic planning discussions. “I think it’s going to inform a lot of our planning and decisions,” says Karen. “We might look at our referrals of Maori patients. While we sit above the mean we want to be getting much closer to the realities of the burden of disease for Maori people in Wanganui.” Kevin Nielsen, CEO of Hospice Taranaki, says the benchmarking results confirmed what they anecdotally suspected from internally collected data. “It is always very valuable to be able to see where your service sits in comparison with like services. In some cases it confirmed what we were doing was up with best practice and one or two areas we are now following up.” Silvia Holcroft, CEO of QPS, says there had been an excellent response from participants in the pilot programme. As is normal for benchmarking programmes, each participant is anonymous, but several are keen to identify themselves so information can be shared. “I’m hoping that down the track there’ll be a user group that will identify themselves and share their strategies that are successful.” Mary Schumacher agrees. “I think we would like to see hospices feeling comfortable enough to be identified. It will be easier to compare like with like.” Silvia, who has been developing benchmarking programmes in health for over 30 years, says benchmarking enables more powerful decision making and communication. “As opposed to just telling the story, you’ve actually got that data there to demonstrate your performance.” Over the next nine months QPS is building in the ability for each service to set its own targets. “I’m hoping this will lead to improving services for patients - that’s the ultimate aim of benchmarking.” Mary says when the pilot programme is finished, the framework will be refined and then offered to all Hospice NZ members to join voluntarily. “We hope that people see the benefit and we would be delighted if we had all services involved.”

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Although hospices have to pay to be part of the programme, funding may be sought in the future. Mary says the collective data from all the hospices participating in the benchmarking programme will provide a more accurate picture of palliative care across New Zealand. For example, the report showing results of the financial KPIs will show sources of funding, use of volunteers and the cost of in-patient wages compared with community care. It will interest many in the healthcare sector and Hospice NZ may publish results from the pilot programme. “It’s really important that we share this information whilst still protecting the sensitive nature of the information,” said Mary.

“Benchmarking can be used as a carrot or a stick, I see it being used as a carrot for hospices. It opens doors to opportunities for improvement,”

Although the reports from QPS provide an excellent source of information on areas such as accessibility and funding, Hospice NZ wanted to ensure that the patient satisfaction measure was targeted specifically to the New Zealand population. To address this, they appointed Auckland University to develop and test a patient and family questionnaire. The questionnaire is currently being tested with patients and staff from three hospice services in the Auckland region. By the end of the year, the research will be evaluated and a National Standard Measure of Satisfaction will be established. This measure will be rolled into the benchmarking programme when it is launched in 2011. Mary describes the benchmarking programme as “a great step forward”, a sentiment echoed by Kevin Nielsen. “This project has had a very long gestation period and is a positive step to greater transparency and sharing of information between hospice services, which will assist us all in achieving best practice across all aspects of our services,” Kevin says.

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The Kia Ngawari study - taking a gentle approach to finding out about end-of-life care for Maori When Dr Tess Moeke-Maxwell was invited to conduct research on Maori families’ experiences of end-of-life care, she wondered if somebody with a clinical medical background would be better. But she has found her experience as a counsellor is standing her in good stead. “As people face those last weeks and months of their lives, often complex stuff from their past can come up which impacts on the individual and the whanau (family). As a researcher it is my role to navigate gently and safely to get the best outcome for my participants and for the research project. Participants so far have offered to share their story in the hope that their information will help other whanau in the future,” says Tess. The Kia Ngawari study is part of the Tangihanga research programme at Waikato University looking at the changing nature of tangi, dying, bereavement and grief in the Maori world. Professor Ngahuaia Awekotuku, a director of the programme, says the phrase kia ngawari means ‘taking it easy, making oneself comfortable’. “We feel it is an appropriate expression of what this study hopes to achieve: an understanding of this experience which happens so often to our people, and is so rarely discussed.” Tess says there is a calm ahua (energy) to the Kia Ngawari study. Information will be gathered from interviews with up to 30 Maori people from South Auckland and Waikato and up to 9 case studies. “The engagement process and the interactions with participants should be a smooth and gentle process where participants and their whanau feel that their experiences are valued.” Tess is of Ngai Tai - Ki Umupuia (South Auckland, Tainui), Ngati Pukeko (Whakatane) and Pakeha descent. She has conducted

research into mental health, Maori diversity and identity and has over ten years’ counselling experience. There has been very little research conducted on end of life care for Maori and this study differs in its recruitment approach and methodology from other studies. “This is not an audit of health services. The study uses an ethnographic lens of enquiry to look deeply into Maori cultural experiences during this part of the life cycle.” says Tess. “Traditionally each iwi/hapu/whanau had their own tikanga (cultural values, practices and beliefs) around caring for people that were unwell, preparing for death and supporting the spirit of the person to pass over well. Generic to all of this would be processes involving karakia, waiata and rongoa (natural healing processes and remedies). Many whanau still utilise these practices that were handed down to us by our tupuna (ancestors). But we are a diverse people and there are lots of things to consider at this time; like for example, some Maori still live very traditional lives while others may be more urbanised and Westernised.” The Kia Ngawari study will reveal if and how these traditions are still being used, as well as participant’s experiences of healthcare from GPs, hospitals, hospices and whanau. A key aim of the project is to identify specific palliative care needs for Maori people and the type of things that help or hinder individuals and whanau to have quality of life at this time. In an effort to recruit participants, Tess and her colleagues have been advertising the study in community newspapers and radio stations. They have sent postcards advertising the study to South Auckland and Waikato agencies working with Maori people and relevant health providers. Each of these methods has proved successful so far, as well as referrals from family members who have heard Tess speak about the project at seminars.

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The recruitment drive began in August this year and Tess has interviewed four people so far. She says each interview has been conducted differently, according to the participant’s wishes. “Participants have to feel comfortable with the process and I need to respect their homes and cultural values and the way they do things.” “We are all different and the way we embrace our culture may also be different. For example, recently I interviewed a gentleman who started the interview process with a karakia (prayer) and whakatau (formal welcome) and yet another interviewee didn’t want to start with a karakia.”

general and more specifically, the changes that have taken place as a result of becoming unwell. They have given a lot of thought to their situation and what is happening to them and their whanau. They have a lot to say about what is going on in their lives on a day to day basis and what they consider adds quality to their lives at this time and in the future.” Tess will continue interviewing until July 2012, but hopes to publish some findings and speak at conferences late next year. At the end of the study, findings will be made available to participants and their whanau, Maori health services, health care professionals and palliative care services, “to help develop

“This is not an audit of health services. The study uses an ethnographic lens of enquiry to look deeply into Maori cultural experiences during this part of the life cycle.” Interviews so far have ranged from two to four hours, and are dictated by the participants’ energy levels. There may be two or three interviews to capture the participants’ story. Participants are asked what life was like for them before they became unwell, what happened when they became unwell, what life is like for them now and what their hopes are for the future.

services and environments that are welcoming, responsive to, and supportive of, Maori and their whanau,” saysTess.

Tess likes to take a kai (meal) as this is often an appropriate way for Maori to conclude their interviews.

The Kia Ngawari study is funded by an Health Research Council career development award. It has ethical approval from Waikato University and the Ministry of Health.

Her gentle approach seems to be paying off: “I’m very pleased that the participants that have invited me into their homes have openly shared with me their experiences about their lives in

Hospice New Zealand, Hospice South Auckland, Franklin Hospice and Hospice Waikato have given her great support and will no doubt benefit greatly from the findings.

To contact Tess about participating in the study, email tessmm@waikato.ac.nz

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Sleep Dreams of Palliative Patients Talking about dreams can help palliative carers identify the social and spiritual needs of their patients, findings from a recent study suggest. Andu Iordache of Auckland University’s Health Psychology Department explored the dreams of 15 hospice out-patients through interviews and dream journals. The study, Sleep Dreams of Palliative Patients, is the first part of Andu’s doctorate thesis. Andu hopes the study will fill a gap in dream psychology and palliative care research. “There’s been a lot of research on general dreaming, but very little on dreams of palliative patients and the meanings they attach to their dreams.” “In mainstream palliative care, dreaming is often brought to attention only when patients suffer from recurring nightmares or delirium, which usually attracts a change of meds. This research has started to show there’s a lot more to dreams of palliative patients - they can be a great ice-breaker for meaningful conversations about where the patients are at, their existential concerns, their regrets, their hopes,” says Andu. Professor Rod MacLeod, Honorary Clinical Professor and Associate Professor in General Practice and Primary Health Care at the University of Auckland, is one of Andu’s PhD supervisors. He says Andu’s work will help add to the understanding of what life is like for those nearing death. “None of us have been there before and sometimes insights from dreams can give us a new way of helping people to address issues that may have been difficult for them in the past. Already a number of patients have found the recounting of their dreams to be of value and they have been able to interpret things themselves,” says Rod. Andu says there’s probably some discomfort among palliative carers to discuss dreaming because it has always been associated with sophisticated analysis requiring years of training. But, he suggests, asking simple questions such as ‘What have you been dreaming about?’ and, if the patient is willing to discuss their dreams, ‘Did you notice any connection with what has been happening in your life?’ may often help carers to connect with patients at a deeper, more intimate level. “Dreams can sometimes take you straight to the heart of the problem,” says Andu. Waking concerns tend to come up in dreams and can also be reflected in the way people make sense of their dreams, he says. Many of the palliative patients in the study had metaphoric dreams of journeys or travels. Andu says this may reflect a compensatory ‘geographical fantasy’. “It’s interesting to see how palliative patients who were often bedbound were still very active in their dreams by going fishing, rock climbing, hunting, swimming, running or visiting exotic places like China or Hawaii”.

There were also many dreams featuring the dreamer’s struggle to carry out a desired action, to cope with an impossible situation, or to connect with other characters in the dream. Such dreams, Andu argues, may be continuous with the limitations palliative patients experience in their waking life, which is why discussing them may help patients express their problems. Recurrent dreams were mostly negative and often linked with some kind of unfinished business. Andu says this is common to all people, but it may be more upsetting for palliative patients as they have less time to deal with those issues and reach emotional closure. Many participants noticed the appearance of unknown characters in their dreams. Andu says this may be metaphorical for “the unknown” that palliative patients are facing, but also makes sense in terms of the many new people encountered in waking life through the healthcare system. Discussing dreams puts the patient in an environment where they are the expert. “No-one can tell that person what the dream means to them,” says Andu. Many of the study participants attributed different meanings to similar dreams. He emphasises dream talk should by no means be a ‘one size fits all’ approach because patients may not remember their dreams or may not be comfortable sharing them. “There’s no recipe to this, it’s an individualised approach. It’s an extra tool we can use with those patients who are willing to engage.” Almost all of the study’s participants thought their dreaming had changed post-diagnosis. This is something Andu hopes to explore further. He would like to find a palliative patient who kept a dream journal prior to their illness and is willing to share it for research purposes and also to share/record their current dreams. For the next part of his study he is looking for palliative care patients willing to share just one of their dreams - the most recent they can remember. He wants to record one dream per person from 100 different patients. The content of the dreams will be statistically analysed and compared with the content of dreams of healthy and elderly populations. Andu will be recording the dreams via phone interviews which take about 10 minutes. Patients do not have to give out their names. If you know of anyone who would like to participate, please email sandu.iordache@auckland.ac.nz or call 098329902 / 0210739731. For the third part of his thesis, Andu will conduct case studies to see how dreaming changes as patients near death. The results from the first part of the study will be published in 2011.

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Educator uses latest technology to widen her reach Using the latest technology allows Palliative Care Nurse Consultant Anne Morgan to spend more time teaching and nursing and less time traveling.

Anne has been an early adopter of technology throughout her working life - she was making films as a nursing tutor in London in the 1970s.

Based at Christchurch Hospital, Anne conducts workshops with healthcare professionals from all over the South Island using satellite links originally set up for the mobile surgery bus.

“I’m not afraid of technology so I’ll go with whatever’s going.”

With video cameras, screens and microphones in her room and the participants’ location, she can conduct fully interactive workshops. “It’s just like being in a classroom,” says Anne. She says the interactive workshops offer more affordable training for services in remote locations. Instead of sending just one staff member to a Christchurch workshop, the whole, multidisciplinary team can attend. “It is more effective. You can discuss the issues that are important in their local area.” Any readings and presentations associated with the workshop are available on the Palliative Care Intranet that Anne established, which now sits on the Canterbury District Health Board’s public website. She says the use of “telemedicine” has improved palliative care for patients, especially in remote locations. “If we’ve got a sick kid on the West Coast we can set up Skype at home. You actually get to hear any issues straight from the child rather than Mum’s anxiety about the illness.” “You can get the GP, district nurse and family into the room and then everyone’s hearing the same message.”

She’s learned to trust I.T. technicians. “With good I.T. and technician support, you don’t need to know the intricacies of how it works.” Anne says many of those who work in palliative care are “people people” who’ve been slower on the uptake of new technologies in education. “People who are computer-phobic do struggle for a while. But most of the equipment is simple to use so it’s just a matter of introducing it gently. I think people realise that it is the way of the future. You can reach so many more people.” Anne does a lot of online research into international trends in palliative care to inform her practice. “I don’t think it will be long before international conferences will be done by video link.” As shown in some of the presentations at the recent Hospice NZ conference, there’s a trend for e-learning and DVD formats to be used for education in other countries. “I think we’re going to have to climb on that band wagon. “The only caution I have is that we shouldn’t take away the faceto-face stuff because there’s real value in being with people as well.”

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Thanks

to our supporters Thank you to all the individuals, companies and grant makers who have made donations to support our work. We really couldn’t do it without you!

National Partners;

Our long term supporters;

And our friends at;

The Lotteries Commission VMD Collier Charitable Trust

www.hospice.org.nz Go online and find out how you can create and send your very own special moment to make someone smile.

Often little gestures and knowing that someone is thinking of you can make your day. This is your opportunity to make someone smile by emailing them a moment, created by you, just for them. You can send as many moments as you like, for free, the idea being that the people you have sent them to will send them to others and so on and so on – we want as many people as possible to experience how good sharing a simple moment can make those involved feel. By sending a moment or passing this link onto friends you will be helping others to understand the philosophy and heart of hospice, enabling people to live every moment.

Hospice is a philosophy of care not a building. Our goal is to support people to live every moment.

The Review - Dec 2010  

News and information about the hospice and palliative care sector in New Zealand

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