Review November 2013
Exploring spirituality – a journey of discovery Recent research has shown that while spiritual care for the dying in New Zealand is of paramount importance, its delivery has been inconsistent. However, feedback from a pilot programme that addresses spiritual needs suggests change is not only possible, it can also have a dramatic effect on patients and staff alike. Dr Richard Egan’s 2010 study Spirituality in New Zealand Hospice Care found that while there was a great need for spiritual care for the dying in hospices, most of that care was being provided by family members. Staff who lacked training have been reluctant to discuss spiritual matters with patients. That situation has been further complicated by the declining importance of religions – the traditional frameworks for discussing death – heightening the need for hospices to address spiritual needs. After members signalled support to rectify this, Hospice New Zealand created the Foundations
of Spiritual Care programme, initially offering it as a pilot scheme to four hospices. The the aim was to provide staff professional development to better deliver spiritual care to patients, while also recognising that staff needed to understand spirituality in its many forms. Hospice NZ’s long term national partner, Craig’s Investment Partners also saw the need and benefit of developing a programme that allowed hospice teams to discuss the importance of spirituality for the benefit of patients and families. As Education Partner of Hospice New Zealand they provided funding to enable development, pilot and rollout of this national resource. They are also funding the review of the Syringe Driver Competency Programme and Palliative Care for Care Assistants Training Programme – both due for release next month. Continued on page 5
In This Issue: Exploring spirituality – a journey of discovery....................... 1 Message from Mary..... 2 Across the ditch and back again – Dr Warrick Jones....... 3 Engaging with youth volunteers in Gisborne.................... 4 Acknowledging those who give so much........ 6 Part of a global movement – World Hospice Day 2013......... 7 Hospice – exploring the facts......................... 8
Kia Ora Welcome to this edition of The Review. As we quickly approach the end of 2013 I would like to take this opportunity to reflect on this year and its highlights.
Mary Schumacher CEO Hospice NZ
One stand out is the development, pilot and launch of the Foundations of Spiritual Care – a professional development programme targeting the foundation spiritual care training needs of NZ hospice teams (all staff and volunteers). Our aim is to improve the understanding and knowledge of spirituality and spiritual care in the wider hospice team – ultimately resulting in improved spiritual well-being in hospices and improved spiritual care for patients, families and whanau. You can read more about this project, in this issue of The Review (pages 1 and 5). This year, the team have also delivered a number of other initiatives to support hospice workforce development:
Review November 2013
Genesis Oncology Trust Palliative Care Lectures – now in its 10th year, this monthly eleven lecture series delivered via teleconference, is attended by approximately 350 people each month. Topics presented mirror the multidisciplinary approach of hospice palliative care and are of interest to a wide range of health professionals and non-clinical staff. Online post-lecture access to materials has seen over 280 lecture downloads this year from NZ, Australia, the Pacific and as far afield as Spain and the USA. BNI Palliative Care Scholarships – the priority in terms of these scholarships has been to support the professional development of psychosocial and allied health teams at member hospices. This area of the workforce remains at a disadvantage for professional development funding and the BNI Palliative Care Scholarships boost opportunities for the development of leadership in this important group of hospice professionals. These scholarships continue to be sought after by high calibre applicants with 9 scholarships awarded to member hospice staff members during 2013. Scholarships went towards supporting hospice staff in post graduate training in a variety of areas such the Postgraduate Certificate in Palliative Care and Post Graduate qualifications in Counselling, Occupational Therapy and Pharmacology. National Partnerships – we are delighted that hospices nationally will continue to work alongside our three National Partners – House of Travel, Craigs Investment Partners and BNI to raise funds and awareness in various ways throughout the country. During 2013 we continued to work with and be supported by our friends at Dilmah and we are delighted to be welcoming a new supporter in Quest Serviced Apartments from the start of 2014. In 2014, 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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Across the ditch and back again – Dr Warrick Jones
After two decades working in palliative care, Dr Warrick Jones thought it was time for a break. Not just a rest from the long hours and stress of his role as North Haven Hospice’s medical director, but also a chance to see how palliative care was delivered outside New Zealand. “I was aware there was a deficit in my learning,” says Dr Jones, who had never worked overseas or in a city with a large population. He’d spent a decade in Invercargill as the hospice’s medical director followed by North Haven in Whangarei. “I became aware of life starting to speed up on me,” he says. So, with the permission of the North Haven Hospice general manager and board, he left for 12 months with no particular place to go, on condition that he returned. With his wife and three children aged nine, 12 and 14 in tow, Dr Jones set off for South Melbourne. He secured work at two places, a 40-bed hospice in-patient unit (with 30-bed long stay) and a community-based organisation. “I thought ‘cool, I’m going somewhere to learn’.” But despite the favourable work conditions – strict 32-hour weeks and better pay – there were many challenges, some he’d encountered, and others new. Dr Jones didn’t believe he could give adequate time to each patient in his care, given his strict hours (he was not allowed to do overtime). “I spent a lot of my time up-skilling nurses and other doctors to make informed decisions,” he says. He became more of a trainer, equipping doctors to do the work often given to consultants like himself. He wanted to challenge the assumption that solutions only came with consultants as other doctors have so much they can contribute. “That was a new role for me.” Unlike New Zealand hospices, both facilities were fully taxpayer funded. “There are benefits to that,” he says. “The obvious one is that you don’t need resources for fundraising.” However, he found that with the fully funded model came a change in attitudes. With no need to look to the community for funding and less reliance on volunteers, there was “less of an attitudinal obligation towards the community”, and less of a bond. The view of movement of patients also differed. Patients would be sent to hospitals for procedures that would be more commonly performed by hospice staff at inpatient facilities in New Zealand. The Australian organisations were also more hierarchical and very doctor-heavy. But he’s quick to state that that is not a criticism, but, he suspects, more the result of differing funding models on either side of the Tasman. Ultimately, he realised that “the New Zealand system does not need to adopt another model. We can’t afford the Australian model for one thing. We have to be more creative about using our resources and that means reaching out to the community.”
He admits the direct comparisons he initially drew between palliative care in the two countries was “a bit off”, as his experience is limited to more provincial practice in New Zealand and big city care in Australia. But he did get the sense that in Melbourne “dying had become complicated”. Culturally, too, Melbourne is vastly different, with its significant and varied European communities and religions. “I was paid very well for doing less work. But the job satisfaction was much less.” He had a great break. No overtime allowed, so enough time to home-school the kids and sample the many delights of Melbourne. Now that he’s back at North Haven Hospice, he appreciates working in a bigger, less hierarchical team. The experience ultimately reinforced for him the principles North Haven has – getting rid of hierarchy, appreciating all team members and equipping all caregivers to do the job. “I’m a lot more confident about our priorities now. There are actually very few situations that community teams can’t handle. Some complex issues require a consultant but most don’t.” To find out more about this hospice service please visit www.northhavenhospice.org.nz
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Engaging with youth volunteers in Gisborne Embracing the art of text messaging proved to be a key to harnessing the energy and enthusiasm of young volunteers at Gisborne’s Hospice Tairawhiti. With the aim of introducing community volunteering to the region’s young people, hospice staff approached Campion College last year looking for willing students. “The idea of getting school students to work at Tairawhiti came out of the ongoing discussion among hospices about the aging population,” says Heidi Stander, Tairawhiti’s Manager of Volunteers. With the volunteer force growing older, just like every other part of society, the challenge was how to address that by incorporating younger people. Heidi initially asked for 10 Campion students before accepting 11, two from year 12 and the rest from year 13. This year’s
the patients at home – with pets for example – which allows them (the patients) to remain at home for longer,” she says. Some had had relatives stay at the hospice, which led them to sign up. “These kids really think quite hard about these things, and work hard too.” At events they were first to arrive and last to leave, often doing jobs the older volunteers couldn’t do, such as six hours of face painting. Three musically minded students ended up playing music for funerals and services. Organising the students proved to be a very different experience to older volunteers. “They do everything by text message,” she says. “So I had to as well.”
“We thought the main drawcard for working here was the scholarships but that wasn’t true. They all really wanted to get involved with the hospice.” intake was all girls, though Heidi hopes some boys will join next year. Tairawhiti capped the numbers at 11. “We didn’t want too many people as we wanted them to have something to do.” The students received leadership points at school for the work, which helped with scholarship applications. “These are the duxes, scholarship kids. They are really the top tier of young leaders at the school. Very articulate, very vibrant and energetic,” Heidi says. “We’re opening a new shop at the hospice and the kids have been amping to get their hands on it. They’re so keen they want to have their own shop within the shop.” The programme has held plenty of surprises for Heidi since it launched in March 2012. “We thought the main drawcard for working here was the scholarships but that wasn’t true. They all really wanted to get involved with the hospice.” She had also assumed that most of them would want to be involved in fundraising, but eight students asked to be trained to interact with patients. The hospice shadowed the students with adult volunteers to train them. “That led to them helping support
They had their own hospice youth ambassadors Facebook page through which they communicated with each other. Heidi would send notices by text, which would be uploaded to the Facebook page for all the girls to see. “This way of doing things can take more time but it works well. It’s a challenge for any volunteer manager to adapt to each niche and be flexible. But it can really be worth it.” The contract between hospice, students and school, which finishes just before year-end exams, called for each student to work a minimum of two hours a month. “But from within a month of launching, they have far surpassed that,” she says. However, Heidi worked closely with the school’s counsellor to ensure they didn’t overdo it. Heidi is unequivocal about how the programme has worked out. “They’ve been given a wonderful opportunity to get involved in a community project and grabbed it. It’s been phenomenal for us.” To find out more about Hospice Tairawhiti – visit their website www.hospicetairawhiti.org.nz
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Continued from page 1
One of the first challenges was to come up with language that could be used to discuss spirituality, including finding a definition for spiritual care that would mean something to everyone, whatever their beliefs. The course is designed to draw out what spirituality means to each hospice and the importance of acknowledging different beliefs in both carers and patients. “It’s about starting a conversation within the hospice as a whole,” says Rachael Crombie, Hospice New Zealand Project Manager. Four hospices volunteered for the pilot, which was delivered in four two-hour sessions weekly or fortnightly. The facilitators were trained cultural and spiritual care advisors rather than educators and there was scope to tailor material for each audience. Evaluation was provided on the day of the sessions and one month later. Another national partner of Hospice NZ – BNI – provided funding to assist with the pilot process, as like Craigs Investment Partners they saw the need and benefits of tackling this topic. “The key for hospices has been to run with the framework in a local way,” says Rachael. Feedback suggests that getting the right people in the facilitator roles has been crucial to the success of the programme. The recent cycle of palliative care has focused on medicine, but the psycho-social approach is now being recognised as being equally valuable, says Alan Beal, Chief Executive of Totara Hospice South Auckland, which took part in the pilot. “We have to believe in spiritual care because we are here for the whole person,” he says. “As an organisation we have to meet the needs of very diverse people and faiths. It’s no longer about which type of Christianity you believe in. It’s way beyond that.” Dr Egan’s research showed spiritual care was very important but not being done very well, says the content developer and practice advisor Anne Morgan, from Hospice New Zealand. “Staff have little or no training in spiritual care, which makes many people hesitant to approach it. It’s often a matter of being prepared to listen and being there for patients.” The programme had four clear parameters, says Anne. It would not be a counselling session, but would discuss what spiritual care meant to staff; it would look at assessing and addressing needs; it would discuss care of staff; and it would address the needs of Maori, who have a strong spiritual base. “Overseas research hasn’t really looked at spiritual needs of indigenous groups,” says Anne. Feedback suggests the sessions can be intense experiences for participants, who are asked to talk about ideas and experiences of a deeply personal nature. “Pain of the spirit can be equal to that of the body,” Anne points out. The sessions are more interactive discussions rather than lessons. There is some theory, but the focus of the sessions is interaction. “It’s more than an education programme, it’s an opportunity for staff to explore themselves,” she says. The last session has participants bring in an object which to them holds spiritual significance for discussion. “It could be
a book, or a shell off a favourite beach.” By then participants have learnt to trust each other. “The spiritual journey can be quite tortuous. Some people may be dealing with issues from their past – unfinished business – or a religious crisis. Asking themselves what ‘death’ means. Some people are very aware of being spiritual, while others that comes at the end of life. Most people come up with their own answers. “The biggest issue is it’s a very individual thing. It means so many different things. There are so many misconceptions about it and yet it’s not always to do with religion. Particularly in a world where religion – the traditional framework for discussing spiritual matters – is declining in importance.” Feedback from the hospices that were involved in the pilot of the programme has been “incredibly positive”, says Anne. “More so than I’d anticipated. One hospice service said it had changed its whole culture, how staff talked to each other. It’s filtered through to all staff and cemented their sense of community.” Another service, with no formal links to Maori community now has connections to a local marae. Despite the diversity of Totara Hospice South Auckland’s staff and volunteers – who come from 14 different ethnic backgrounds – the pilot showed participants that there were universally held beliefs. “That was the great thing about being involved in the pilot, it allowed people to be openly share their beliefs and background, “ Alan says. “It was a very interesting journey because people had to look at their own views as well as other peoples’.” The facilitators at Totara Hospice South Auckland held four half-day sessions a week apart “because they were very intense”, with participants chosen from all disciplines at the hospice. As the team got to know each other, they began to open up and share more of themselves with the group. “Out of that came a real dynamic – the pilot participants have been so enthusiastic about the experience that the wider team is now keen to do the programme.” People’s behaviours and attitudes changed, Alan says. Staff became more aware that we also look after each other. “There is a change in the environment here. It can be quite stressful, but people now recognise that their colleagues can need space when they have had a difficult working situation or personal things they’re working through.” Since the pilot, Totara has appointed a spiritual care coordinator to deliver the programme and the remainder of the staff will go through the programme over the next year. “It’s really helped to define our common values,” Alan says. “Spiritual care is implicit in what we do for patients and now for understanding ourselves.” Feedback from the pilot process has helped to shape the final programme – which following a blessing ceremony will be rolled out to all member hospices of Hospice NZ. What will be interesting, says Anne, is to see how much the situation will have changed in a year’s time should Dr Egan repeat his research.
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Acknowledging those who give so much Being officially recognised with Minister of Health Volunteer Awards for their years of selfless service is still no match for helping their hospices, say two veteran volunteers. No one can doubt Kathleen Sheehan’s commitment to her volunteer role at Te Omanga Hospice in Lower Hutt. After 22 years, aged 85, Kath is still behind the reception desk reassuring callers and collating files for medical staff. Even disaster couldn’t stop her. After a fire gutted her house, Kath turned up in the only set of clothes she could find. “I always wanted to work there,” she says. “I was always very keen on surgical work – if there’s some surgery on TV, my head’s nearly in the screen – but it never worked out that I could become a nurse.” To satisfy her desire to help others she volunteered at Te Omanga, initially writing correspondence before becoming a receptionist, where she still works two days a week. “Even in a little way, you feel you contribute,” she says. Kathleen’s dedication and humour were rewarded with her being named an Outstanding Achiever at this year’s Minister of Health Volunteer Awards. But she’s quick to deflect attention from herself and praise the staff. “I just love the nurses. They do such a wonderful job.” At 85, many people would have retired from volunteering. It was her late husband’s wish that she should continue the work after he died and Kath feels she has a few years yet to give. “I have a contract until I’m 90,” she says with a laugh. “But I don’t think I’ll still be doing this by then.”
Shirley Miles, instantly recognisable in Nelson market as the city’s Pearly Queen, has collected more than $100,000 for the city’s hospice over the last 11 years. She decided to support the hospice because of a family history with cancer, which she has also had. Twenty years ago, she began her fundraising by hosting dinner parties. “But they were a lot of work for not much money.” She then hosted an afternoon quiz, which was “More money and a lot more fun.” Her association with the Pearly Queen started as a bit of fun, dressing up for an outing on a London bus. The tradition of pearly kings and queens collecting money for charity has its origins in 19th century London. Shirley, who was born in London, qualifying her to be a modern-day pearly, approached the hospice with the idea she could collect money for it. Eleven years later, she’s still at the market, dressed up with bucket in hand. The hospice does such important work and needs all the help it can get, she says. Health problems have meant she has had to cut back on her collecting, which she now does only on sunny days, relying on neighbours for a lift. “I wish I could find a successor!” she says. “I’ll carry on as long as I can.” The Health Volunteer Award is not the first time her contributions have been remembered, as the city honoured her with a civic award in 2005. “It’s very nice to be given these things,” she says. “It shines a light on the hospice, which is so important.”
“I still love that contact with people, being able to tell people who call that everything will be alright.”
To find out more about Nelson Tasman Hospice visit their website www.nelsonhospice.org.nz
It was Shirley Miles’ London roots that led her into long standing service raising funds for the Nelson Tasman Hospice.
To find out more about Te Omanga Hospice visit their website www.teomanga.org.nz
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Part of a global movement World Hospice Day 2013 On 12 October 2013, World Hospice Day, the Worldwide Palliative Care Alliance called for urgent action to improve access to hospice and palliative care. Great progess has been made but there are still millions of people around the world who do not have proper access to hospice and palliative care. All global partners, including Hospice New Zealand and the 30 member hospices, focused on dispelling the myths, encouraging people to promote the facts about hospice and palliative care. MYTH: Having hospice and palliative care means you will die soon. FACT: Hospice and palliative care is not just for the end of life. It is a holistic approach that includes caregiver support, spiritual care, bereavement and much more. MYTH: Hospice and palliative care is just for people with cancer. FACT: All those who are diagnosed with a chronic life-limiting illness can benefit from hospice and palliative care.
education to dispel unhelpful myths and promote hospice and palliative care facts. “World Hospice and Palliative Care Day is a day of celebration for the progress that has been made in reducing pain and suffering. But it is also a day to shine a light on neglected or marginalised groups that are still unable to get the care that they require,” added Sharon Baxter, Worldwide Palliative Care Alliance and Executive Director of the Canadian Hospice Palliative Care Association. In addition to better integration of hospice and palliative care into health care, the global hospice and palliative care community is stressing the need for: • More training for health professionals and carers,
MYTH: Palliative care only manages pain through the use of addictive narcotics.
• Improved access to pain and symptom management medications,
FACT: Palliative care is whole person care that provides psychosocial and spiritual care along with pain and symptom management.
• The inclusion of hospice and palliative care into existing health policies,
“Shockingly, 42% of countries do not have any identified hospice and palliative care services and 80% of people globally lack adequate access to medication for treatment of moderate to severe pain. This means that millions of people, especially in the developing world, are living and dying in unnecessary pain and distress,” stated David Praill, Worldwide Palliative Care Alliance and Chief Executive of Help the Hospices. To ensure all those with life-limiting conditions are cared for with dignity and according to their wishes, Hospice New Zealand will continue to lend it’s full support to the global movement calling for nationally integrated hospice and palliative care health systems around the world. Mary Schumacher, Chief Executive of Hospice NZ stated:
• Opportunities for older people to be involved in decisions around their care. Hospice NZ fully supports these priorities and has developed a number of resources that will work towards meeting these needs; • In 2012 more than 7000 aged residential care staff completed a selection of the nine learning packages on offer through the Fundamentals of Palliative Care education programme. • 11 hospice staff from a range of disciplines were awarded a BNI Scholarship to undertake further study. • 2000 nurses completed the Hospice NZ Syringe Driver Competency Programme and 700 care assistants attended palliative care training.
“Hospice and palliative care are essential for any national health care system to fully care for those with the most serious chronic illnesses. Palliative care is for all persons with limited life expectancy no matter what their disease or age. Palliative care is safe, effective and promotes dignity, comfort, and support.”
• 6000 copies of the 6th edition of the Palliative Care Handbook were distributed to hospices, residential aged care facilities, GP’s, district nurses and nursing and medical students.
Advocates, patients and carers are unified in calling for urgent action from UN agencies, governments, the private sector, and civil society to improve access to palliative care for people with life-limiting conditions by integrating palliative care into existing services. They also urge these institutions to engage in public
To find out more about the work of Hospice New Zealand www.hospice.org.nz
• 4307 people from a range of health professions listened to the Genesis Oncology Trust Palliative Care Lectures – delivered via teleconference from Feb – Dec each year.
To find out more about World Hospice and Palliative Care Day 2013 visit www.worldday.org
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Hospice – exploring the facts • Hospice is not just a building; it is a philosophy of care. The majority of people receiving support are cared for in their homes. • Our goal is to help people make the most of their lives; to live every moment in whatever way is important to them. • Hospices can provide care and support for anyone living with a life limiting condition – e.g. heart failure, motor neurone disease, MS or cancer. • We care for the whole person, not just their physical needs but also their emotional, spiritual, and social needs too. • We care for families and friends as well, both before and after a death. • Hospices are independent charitable organisations providing care and support completely free of charge to people using our services. • Whilst free of charge to people using hospice services it costs a lot to provide, in 2013 it will cost just over $75M nationally. • As an essential health service provider, hospices receive the majority of funding from Government; financial support from the community is essential to meet the shortfall – in 2013 the total required from fundraising efforts is $30M nationally.
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to our supporters
Thank you to all the individuals, companies and grant makers who have made donations to support our work. We really couldnâ€™t do it without you!
Our long term supporter:
14,400 140,000 840,000
During 2012 the hospice services throughout the country provided care and support for more than 14,400 people living with a life limiting condition.
Hospice is a philosophy of care, not a building, most people are cared for in the community, in 2012 hospice staff made more than 140,000 visits to people in their homes
As an organisation we are firmly grounded in the community, with over 13,000 people volunteering over 840,000 hours of their time for hospice during 2012.
Hospice New Zealand Level 6, i-Centre, 50 Manners Street, Te Aro, Wellington 6011 P O Box 6660, Marion Square, Wellington 6141 T: 04 381 0266