The Review - Dec 2009

In This Issue:

End of an Era.................. 1

Message from Mary

and Q & A .......................2

Learning from Others ....5

Cancer Navigators .........8

Around & About ........... 10

Diary Dates ...................11

Over the past six years Hospice New Zealand & Whitireia Community Polytechnic have jointly offered qualifications in Hospice Palliative Care, which have been completed by 250 students at a postgraduate level and just under 75 students at a graduate level.

The courses, which began in 2003, have been delivered at Mary Potter Hospice, Wellington & Te Omanga Hospice, Lower Hutt and through Hospice Palliative Care Education in Christchurch, in a unique partnership model (both nationally and internationally) between the education and the health delivery sectors.

“Our two organisations - Hospice New Zealand and Whitireia Community Polytechnic - have a strong commitment to contributing to high quality care of people living with a terminal illness through the education of health professionals and members of the community.

“This education programme reflects a philosophy of caring and emancipatory education that acknowledges students as partners in learning. Since 2003 it has been delivered by a team of enthusiastic and committed educators with wide experience in teaching hospice palliative care to

undergraduate, post graduate health professionals and community groups, via a unique educational alliance,” says Kathy Holloway, RN BN MHSc, Associate Dean, Faculty of Health Education and Social Sciences, Whitireia Community Polytechnic. Due to a change in funding to tertiary institutions, from 2010 the course will no longer be provided through hospice sites. In future the course will run directly through Canterbury University and Whitireia campus –creating a timely moment to stop and look back at how the programme evolved.

1982 - The first module was designed and offered by Te Omanga Hospice in Lower Hutt.

1983 - Initial discussions were held with New Zealand Nurses Organisation (NZNO) and Nursing Council of New Zealand (NCNZ) on academic recognition of the modules.

Continued page 3

The End of an Era

December 2009

theReview

Welcome to the final edition of The Review for the year – I hope 2009 has been a successful and fulfilling one for you.

The focus of this edition is one of reflection – looking back at the end

of an era with the recent changes to the Post Graduate Certificate

in Palliative Care, the travels undertaken by Yvonne Bray and speaking

with Nancy McNoe about her work as a Cancer Navigator on the

West Coast of the South Island.

As 2009 comes to a close, I wish you and your loved ones

a happy and safe festive season and look forward to sharing

more hospice stories with you in 2010.

All the best

Warm regards

Mary Schumacher

Chief Executive

Hospice NZ

Q & AIn this regular feature we ask a member of the hospice family a series of questions – on this occasion Rachael Crombie, Membership Projects Coordinator at Hospice NZ “volunteered” for the task

Q. How did you become involved with hospice?

A. I had always heard fantastic things about hospice from people that worked and volunteered in hospices around the country. So when I heard about the chance to be involved at Hospice NZ in the membership project coordinator role, I jumped at the chance.

Q. What are you currently working on?

A. I am currently working on evaluating and finishing off projects for 2009 and looking towards 2010 and investigating projects that can support members in the fantastic work that they do in hospices.

Q. Do you have a goal for this week? What is left of this year?

A. Surviving the wind up before Christmas intact!

Q. What is the one thing that would really make a

difference to your work?

A. Hearing more stories from hospices, patients and families and

staff and volunteers. I was inspired recently by the applications

received for the House of Travel Volunteer Award which really

showed how these individuals enhance hospices across the

country. I also really enjoy reading the newsletters from our

members, they also share so much about how services make a

difference to people’s lives.

Q. Where are you likely to be found after work?

A. If it is a beautiful Wellington day I am likely to be walking

along the harbour. However it has been a long winter and often

the coffee and cafe next to the harbour call loudly too!

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.

Mary Schumacher Chief Executive

Kia Ora

theReviewDecember 2009

Page 2 | December 09

1986 - Hospice New Zealand was established, having education as a major focus of its activities.

1993 - Hospice New Zealand Standards for Education in Hospice and Palliative Care were adopted.

1996 - Programme was standardised with the addition of written assessment and delivered by the education directors in four hospice sites: Auckland, Christchurch, Lower Hutt and Wellington, National Certificates for Attendance and Attainment were introduced.

1997 - Programme development continued with Module IV being offered.

1998 – A moderation process was introduced, along with the commencement of negotiations for the establishment of graduate certificates with the Continuing Education and Nursing and Midwifery Departments at Victoria University of Wellington. Victoria University facilitated a meeting with Whitireia Community Polytechnic School of Nursing and Health Studies at which a proposal was presented by Whitireia Community Polytechnic for establishing the Graduate Certificate in the Care of the Terminally Ill and their Carers.

2000 - Hospice New Zealand Education Advisory Group decided to work towards the establishment of the four module graduate certificate with assistance from Whitireia Community Polytechnic.

The J.R. McKenzie Trust and Reuhman Hospice Charitable Trust generously provided funding for an education consultant to undertake the review work and obtain the required academic approvals.

2001 - The programme was renamed as the Graduate Certificate in Hospice Palliative Care and development began towards a Postgraduate Certificate in Hospice Palliative Care.

2003 - The programme was approved by NCNZ and accredited as two papers at Level 8 by NZNC and NZQA. Hospice New Zealand, in partnership with Whitireia Community Polytechnic offer the programme and it is delivered by the three education directors.

The End of an Era Continued from cover

“I believe that postgraduate study changes the way practitioners think

and provides the opportunity for reflecting on and improving their clinical judgment thus enhancing

practice.”


“The key to our successful alliance has been communication and commitment to our shared vision. Overall the programme has delivered in terms of excellent student evaluations,

completion and success statistics and employer satisfaction.”

Delivery of the programme at places of work rather than in a tertiary classroom setting was chosen to support access and engagement by students who are ‘earner learners’, says Kathy Holloway. Since 2003, approximately 200 students per year have been enrolled in the course. “Numbers have remained remarkably steady,” says Kathy, “which indicates a continual movement of students through the programme as it can be managed within the work setting in terms of release.”

Its significance is critical, she says. “I believe that postgraduate study changes the way practitioners think and provides the opportunity for reflecting on and improving their clinical judgment thus enhancing practice.”

The core focus for Hospice NZ and Whitireia has been the development of quality, relevant education for health professionals in hospice palliative care. The programme has had a strong focus on the clinical competencies required, as well as the design of ‘authentic’ written assessments with clear application to the practice of registered nursing and allied health professionals.

Since October 1999 there has been ongoing review and refinement of the four module programme, which has involved the Education Directors from Te Omanga Hospice, Lower Hutt; Mary Potter Hospice, Wellington; Canterbury Hospice Education Trust, Christchurch; and an independent consultant and members of the moderation and assessment committee in the School of Nursing and Health Studies, Whitireia Community Polytechnic.

In 2001 the Nursing Council of NZ specialty nursing competencies were included in the programme. Portfolio development for allied health professionals was incorporated into the programme to assist its multidisciplinary nature; and strategic planning for effective and collaborative work was also included.

“Education and service providers are often exhorted to work together to bridge the theory-practice gap and provide ‘authentic’ practice development education,” says Kathy. “Educational alliances and partnerships are an effective but potentially complex response to this rhetoric. One of the key requirements from the 2003 NZQA accreditation process was the appointment of a postgraduate programme leader by Whitireia, which provided necessary support for the provider partner in developing systems and processes to support quality management and assurance.

“The key to our successful alliance has been communication and commitment to our shared vision. Overall the programme has delivered in terms of excellent student evaluations, completion and success statistics and employer satisfaction.”

The upcoming changes should make little difference to current students, she says.

“Current students will not be disadvantaged – every student currently enrolled will have access to a transition pathway developed to support them to complete the qualification.

“Additionally, commencing in 2010 a similar programme will be offered in collaboration with the University of Canterbury (pending formal approvals currently in process). Students will have the option of enrolling at either institution and a Memorandum of Agreement ensures students can articulate these papers between the two institutions.

“Hospice NZ remains an essential part of the programme advisory group and we will continue to work together to provide quality education for the sector to support quality patient outcomes.”


Yvonne’s visit to research public education about hospice services in the UK, which took place in 2007, was funded by a Fellowship from the Winston Churchill Memorial Trust. The Fellowships fund travel for intensive investigative research, to help New Zealander’s to bring back insights and understanding that will enrich their community and, ultimately, New Zealand as a whole.

Yvonne’s Fellowship provided her with the opportunity to visit the education facility at St Christopher’s Hospice, London, and experience programmes that include public participation and involvement. She also spent a day at Dorothy House Hospice, just outside Bath, finding out about their Family Carer programme and speaking with the staff that facilitate their workshops and evaluate its effectiveness with the attendees.

Yvonne’s interest in the need for more public education was sparked by a hospice based research project that found a general lack of awareness of what hospice services are available, the philosophy of care and what hospice stands for – “and indeed the perception that when hospice gets involved, death is sure and imminent”.

This latter perception, says Yvonne, which has long been a barrier to access, is incorrect and misleading and can be addressed through education.

The issue is particularly evident amongst Polynesians and other cultural groups, where there is “a genuine lack of awareness of what is available. There is also a sense that accessing services for their dying family member is simply not their way, or they are too shy to access a service that is predominantly European in concept. At this stage of illness, Western forms of medicine may not be conducive to the traditional ethnic forms of medicines they favour.”

The research group identified the need for education to be multi-layered and taken to the various community groups in whichever mode is appropriate for that cultural group.

As part of a subsequent literature review of public education about hospice, Yvonne identified St Christopher’s and Dorothy House as organisations addressing this need and following her visits to both institutions, she recommended a number of programmes be implemented.

Situated in central London, St Christopher’s serves a population of 1.5 million with a diverse multicultural make up of African Caribbean, Asian and European people – similar to the diversity and socio-economic make up of the South Auckland population.

During her five day visit, Yvonne experienced a range of community education initiatives that included monthly public information sessions; work with local schools to introduce discussion about death, dying and hospice to children in the 11

– 14 age group; regular Friday open days, which allow outsiders

to visit the hospice to explore the meaning of palliative care and what it entails; support and education for family carers counselling for children and young adults; a palliative care course for hospital nurses; education support for private hospitals and user forums.

In addition, at Dorothy House she observed a course for family carers and a daily massage clinic.

“The purpose of the whole exercise was to return from this first hand experience and be able to introduce the concepts for implementation at the hospice I work in and also to be able to integrate the knowledge gained into teaching in postgraduate courses at the university.”

Any plan of action around education requires a collaborative approach from the hospice team, says Yvonne, but she outlined a draft Public Education Framework to start discussions and establish a working committee.

“Resources need to be gathered and innovative modes of presentation planned to draw the attention of the audience whilst delivering the message of how hospice can help, for whom and what is offered. Priorities include approaching communities of people - for example, the religious and cultural groups in

the area - with an offer to facilitate an information session. Service clubs may be addressed by hospice management, but another approach would be to plan and hold public information sessions at hospice and advertise the short sessions in the local newspaper and notice boards to draw the local audience. This latter idea could be fashioned in a similar way to the two-hour public information day held monthly at St. Christopher’s Hospice.”

Learning from Others

Any plan of action around education requires a collaborative approach

from the hospice team.

Yvonne Bray, who works at both Hospice South Auckland and at the University of Auckland, has developed an education programme for the hospice, modeled on the work done by two English hospices.

Yvonne receives her fellowship from Governor General The Honourable Sir Anand Satyanand GNZM, QSO


Yvonne’s recommendations included: • Public education • Family carer education and support • User/carer audits.

She outlined the following aims and desired outcomes for each.

Public Education Aim: to orientate members of the public to palliative care and hospice, as a service available in lifelimiting illness.

Desired Outcomes: The public education programme will

• Inform attendees of the hospice approach to care and services offered for families requiring palliative care

• Inform families on how to access palliative care services from the hospice and be empowered to seek support and assistance as required

• Encourage members of the public to establish a liaison with the hospice even in the absence of need for care or services

• Ensure that the hospice will continue to enhance the working partnership with the community by providing education and involvement with groups and other organisations.

Resources: • Hospice pamphlets in various languages represented in the community e.g. English, Samoan, Tongan, Chinese, and Indian

• DVD presentation of the Face of Hospice with relevant ‘take- home’ messages

• A featured presentation at each session of a relevant topic from an appropriate hospice staff member.

Family Carer Education and Support Aim: To support and impart knowledge and skills to family carers that will empower them to care for their loved ones with a degree of assurance and ‘know-how’.

Desired Outcomes: The sessions will enable the carers to

• Meet with and establish an interactive relationship with others in the group who share similar circumstances, issues, solutions to problems and needs

• Express their need for support, knowledge and information about the illness and the effect on their family and seek guidance to problems being experienced, either individually or in the group

• Obtain support and relaxation from attendance at each session • Receive experiential learning around difficult tasks in the care of a sick person as required.

Yvonne says that her visit to the two hospices represented a considerable learning curve for her. The experience enhanced her passion to improve access to palliative care for people who have a need for the support and services offered.

“Additional support systems to cope in the role of carer can only contribute to quality of life for people who are dying in our communities in New Zealand.

“Enhancing family resilience in the face of life limiting illness is a desired outcome of my project. The challenges families face when living with a terminal illness introduce a myriad of emotions and distress that overwhelms their coping strategies and lives. If the community they live in is informed of what


is available, distress can be relieved to a certain degree, with support, knowledge and resources that are delivered compassionately. Information that clearly outlines the hospice approach, philosophy of practice and available services could alleviate much fear and worry about how to achieve quality of life in the remaining time.

“Family have the major burden of care for loved ones in life limiting illness and require support to help them on this journey. Family resilience is enhanced with support and informed ‘know-how’ enabling carers to survive the challenges they face. This also ensures their well-being in the face of adversity that is often of the greatest magnitude in their lives. A programme that first of all identifies their particular needs and then delivers, over a series of sessions, the knowledge and experiential skills to help them to care for their family member has great potential to enhance their resilience.”

Carer education requires some flexibility, as the needs of the group must be identified first. Yvonne’s initial plan was to identify staff members who could be valuable collaborative members of the planning committee and arrange an initial meeting to plan and implement the first programme, number of sessions, create a flyer, compile an information folder for attendees and identify potential attendees for the first group.

A draft framework of desired outcomes was created to provide a platform for discussion and initial progress. Terms of reference were also created in order to keep the group at a functional level and ensure continuity.

This programme has since been implemented at Hospice South Auckland, first as a pilot over three months earlier this year and recently commenced as a rolling programme to enable family carers to join the programme and complete the four sessions as convenient to them. It has been evaluated positively by the participants and the benefits have been noted through the nurses who work with these families.

User/Carer audits User Forums are audits that were implemented at St. Christopher’s Hospice because of the need to identify gaps in the services, to prove the point around needs, check that processes are appropriately effective and not a speculative opinion. User forums could also be utilised to identify needs and shape the direction that carer education follows, which is an opportunity to deliver family focused care.

“Taking hospice to the community can be done through a good information-giving and education programme that also invites the public into hospice in an exchange of mutual benefit,” says Yvonne. Improving access to palliative care through knowledge and support of families as a unit can only contribute to the quality of life of people with a life limiting illness and their families.

Yvonne’s report can be accessed through the Department of Internal Affairs website www.dia.govt.nz quick search with keywords Winston Churchill.

Enhancing family resilience in the face of life limiting illness is a desired outcome of my project


Cancer navigators –

As part of the implementation of the Cancer Control Strategy, teams of ‘navigators’ – who help patients manage their journey with cancer – are being trialed on the West Coast , Rotorua and Tamaki.

Nancy McNoe, Kaihautu Cancer Navigation, one of the team working for the West Coast PHO, explains the cancer navigators’ role. “We’re advocates for people with cancer and their families. We offer support, we establish a relationship with the patients and we link them up to agencies to get assistance. We help them navigate the health and social services systems. We help them with Work & Income – to ascertain what the illness might mean for their benefit or whether they may be eligible for one if they have to stop working. This is a large part of our role. We also help with things like transport.”

The West Coast area has a team of four: coordinator Danielle Smith plus Nancy (who as Kaihautu also has responsibility for the Maori patients in the area), Megan Cumming (who covers the Buller area) and Adam Gilshnan (who does Hokitika south).

“The four of us come from different backgrounds. I had been in health administration/ management for about 12 years – first of all for the Plunket Society and later for the Maori health provider on the West Coast – which provided me with a very good knowledge of the systems in place in the local community.”

Most new referrals come via GP’s, with a few pre-diagnostic. There are also some self referrals, when someone hears about the service during treatment.

The West Coast, Rotorua and Tamaki trial, which will all run for three years, are defined as the Rural, Maori and Urban projects respectively.

The pilot follows a piece of research: The Journey of Treatment and Care for People with Cancer on the West Coast, which was supported by West Coast DHB, Buller West Coast Home Hospice Trust and the local Cancer Society.

“The research done on the Coast highlighted a lot of issues and barriers for cancer patients locally: distance and lack of transport, finances, isolation - which the service is now addressing. People are relieved to find out the service exists.”

“We have developed good relationships with the different agencies involved in the journey (from the oncology team to district nurses and pharmacists to the Salvation Army),” says Nancy, “They know who we are and what we do, and we work well together.”

Establishing a good relationship with patients is key.

“A huge part of what I do initially is about establishing the relationship – sometimes when I visit the first time I don’t talk about their condition. What’s important is to get

the relationship going. Everyone knows everyone on the Coast and that provides a way of connecting with the patients. We’re all very caring people and you can’t really work with a client effectively without a trusting relationship.

“We’re about reducing barriers by providing support to attend appointments, providing transport to get to the appointments, and hooking people up with agencies that can help them, like the Ministry of Health and their national travel funding assistance. People often don’t know what services are available to them and many are not well enough to think about it.”

Nancy says it is very rewarding to alleviate some of the difficulties associated with people’s cancer journeys – and that she feels privileged to be let into their lives.

We’re advocates for people with cancer and their families. We offer support, we establish

a relationship with the patients.

walking alongside the patient’s journey

Nancy - left and her mother, a Kaumatua, who has helped hold hui for the Cancer Navigators team.

Nancy - far right and the Navigator team for the West Coast PHO


“We get to know the families too, so even after the patient passes away we can stay there to help their spouse or children to adjust.

“I worked with an elderly gentleman in his 80’s, whose wife didn’t drive the car and hadn’t ever written out a cheque. After he died I had lots of offers of help for her, but she didn’t want to put anyone out. Her family asked me to encourage her to take up the offers, so I stayed and supported her to get enough confidence to say yes. I stayed involved for about three months, visiting twice a week. The whole idea was to empower her to establish a new life and she just blossomed. She isn’t stuck out there any more, now she enjoys going to concerts and does her shopping by herself.”

“Having the time to give to patients and their families is critical. We are privileged that we have the time to do this work. I am also pleased that I can help Maori people in the area. 9% of the population on the Coast is Maori and our register is 19% Maori. Many are not from this area, they come from other iwi and their whanau are in the North Island – so there is a big cost to get them down here. I help organise accommodation for visiting family and I can call on kaumatua and kuia to support the family with the protocols that are so important for Maori to get through the process of grieving.”

Asked about a typical day, Nancy says there isn’t one. “Each patient’s needs are so different, even for those with the same types of cancer. There are so many variables – like existing support systems and socioeconomic level – which make each patient unique.”

But their approach holds steady.

“We help to make everyday life a bit easier. We provide support with W&I, we pick up scripts at the chemist. We even have a relationship with Corrections so if someone isn’t mobile we can ask them to get the PD boys to deliver a load of firewood.”

Everyone knows everyone on the Coast and that provides a way of connecting with

the patients.

walking alongside the patient’s journey


Around & AboutOlivia Joblin has been appointed as Allied Health and Support Services Director at Hospice Southland. This is a new role, established at the end of July as part of an organisational restructure, which covers the day hospice, hospitality and facilities, bereavement support, complementary therapies, administration and the hospice shop. Olivia also has oversight of the volunteers. With a background in medical social work, prior to taking this role Olivia was working at Southland Hospital.

“I was ready for a new challenge and was keen to work in the palliative care field. It is exciting and fulfilling to work in an area where input from all members of the multi-disciplinary team is sought and highly valued.”

Sandra Sanderson moved with her family from Scotland to New Zealand last November and is working as Nursing Director at Cranford Hospice. “We have settled in really well in the lovely Hawke’s Bay and we love the people, culture and all things Kiwi! I had never been to New Zealand before but always knew I wanted to live here.....strange but true!”

Sandra says she was what you might consider a “late starter” in the academic field of nursing but she began practical nursing as an auxiliary nurse at the age of 16yrs and progressed into general, midwifery, psychiatry and district nursing qualifications. She enjoyed all aspects of nursing but finally settled and specialised in palliative care nursing, management and teaching. Educated to a Masters level in cancer and palliative care she was an extended nurse prescriber in the UK.

At Cranford she hopes to initiate team leader posts for nurses within the hospice and community teams. This enables nurses to lead and manage at operational level and also to enhance the nursing leadership in the speciality of palliative care nursing in Hawke’s Bay. “I continue to have special interests in The Gold Standards Framework, strategic development of health care and in teaching.”

Elaine Moffat has recently become Chair of Te Omanga Hospice after five years as a board member. Elaine was previously involved with international women’s organisation Soroptimist International – but after being offered

a lead role internationally, joined the Te Omanga Board after deciding she wanted to work more closely with her local community. Looking ahead, she says, a key focus will be protecting Te Omanga’s emphasis on delivery of care to patients and families in their own homes. “This is a major aspect of our work and the 24/7 availability of our medical team is frequently cited as being our special strength. It places extra demands on our staff but they consistently rise to the need.”

Dyan Cann became the Communications Manager at Hibiscus Hospice in July. Dyan has an extensive background in communications, marketing, advertising and event management and is working closely with a number of Hibiscus Hospice’s “leading lights” to spread the hospice story as widely and effectively as possible. She has developed a marketing and communications strategy and, among other activity, has managed the publicity around the opening of the hospice inpatient unit. Next up, a revamp of brochures and the website.


Diary Dates

2 February 2010

Care at the end of life: the role of the primary healthcare

London

www.rsm.ac.uk/academ/gpj102.php

April 27 – May 2 2010

Program in Palliative Care Education and Practice

Harvard Medical School Center for Palliative Care

Cambridge Massachusetts

www.hms.harvard.edu/cdi/pallcare

2 to 3 June 2010

Connecting and Caring in Palliative Care: 9th Annual Kaleidoscope International Palliative Care Conference

St Francis Hospice, Dublin, Ireland

www.stfrancishospice.ie/education/kaleidoscope.htm

28 to 31 October 2010

14th World Society of Pain Clinicians Conference

Beijing, China

http://www.kenes.com/WSPC

9-11 November 2010

19th Hospice New Zealand Palliative Care Conference

Wellington, New Zealand

www.hospice.org.nz to register for email updates

to our supporters

Thanks to our supporters who have made donations or supported our ongoing projects over the past few months:

National Partners:

Thanks

VMD Collier Charitable Trust

JR McKenzie Trust

A big thank you to all the individuals who make donations to support our work.


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

www.hospice.org.nzGo 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.

Documents

The Review - Dec 2009