Hospice Care Association of Southern Tasmania - hospicesouthtas.com

Hospice Winter Newsletter 2010

Welcome to this bumper edition of the Hospice Newsletter – ideal for reading by the fire on a winter’s evening. I’d like to say a special thanks to those volunteers who responded to my appeal for articles. There is some great feed-back on the recent Hospice weekend – I hope it will provide an impetus for more people to attend next year. The photographic illustrations of the weekend are thanks to Paul Barrington.

Jenny recently attended two conferences – Happiness and Its Causes, and a Statewide Forum to address palliative care and the needs of people from Culturally and Linguistically Diverse Communities. Summaries of some of the key points are included in this newsletter. Other Hospice news is also included, along with a joke, a recipe, and a book review, and a report from Christine of her recent educational trip to the USA to learn more about massage in cancer care.

The education calendar for the next six months will be sent to volunteers under separate email, or is attached here for hard copy recipients.

If you want to see more photos in colour, there will be some posted on our web-site at www.hospicesouthtas.com, (when I can work out how to do it), along with this newsletter, and the education calendar.

Welcome to new volunteers: Paul, Ian, Megan, Mary D, Erika, Connie, Mary M, Marian, and Frances (now returned home to Canada).

HOSPICE WEEKEND

“First, I would like to thank you and Lucia for organizing the weekend. It was all very enjoyable and informative.

From a personal point of view - I was totally out of my comfort zone (as a new volunteer, and someone who doesn’t like sleeping somewhere other than her own bed! Ed) I think I did really well – (me too! Ed) despite taking quite some time to get my sleeping bag zip to work, and then upon finding myself installed on the top bunk began wondering how on earth I was going to get back down again! I regret that I did not go on the early morning walk along the beach, but fully intend to do that next time.

I found all the activities most interesting and informative, and Fran really touched me with her story of love and loss. I feel I learned a lot just from being part of the group, and realized that other people seem much more adept and/or comfortable in expressing themselves than I am. I particularly enjoyed the MADE workshop, and look forward to more of that in the future.

The whole exercise was good for me, and some aspects quite thought provoking. The shared evening meal was very good. Good food, nice wine, and good company - you can't beat that. We have some very interesting characters in our group!”

Strategies to Help Increase the Awareness and Acceptance of Death for both the Medical Profession and Families.

Following on from the workshop at the recent Hospice Weekend, I have collated the participants’ ideas and found most groups were thinking along the same lines. The key focus was on education programs.

For Doctors:

- a residency program, for all doctors, in palliative care

- a “death and dying” unit in their medical training, including

- signs and symptoms of dying and death

- advanced care directives, and their consequences.

For Families:

- calling death, DEATH

- education programs in school and community

- advanced care directives more widely publicised

- provide a forum to voice dissent

In summary, the general feeling was there is a definite need to try and change social attitudes towards death and dying. It was felt this could be helped immensely by education programs for all ages – in schools, the wider community, and through the media. Our challenge, now, is to see if we can help initiate or influence these ideas in becoming a reality.

Fran Hewitt

I associate pubs in England, tables of elderly men with a board and cut off matchsticks, with crib. Where better to learn the finer points of the game, than at the Hospice weekend at Roche's Beach?! Thank you to Sheila for the expert tuition. She is a crib master I sense. Despite the fact that I wrote down what I considered to be the important points of the game, on re-reading them I deduce I will need to have some more game experience before taking on fellow players. (Good to observe men use their fingers to count too.....)

How fortunate we were to secure Stephanie Thompson, registered music therapist and psychotherapist to give her talk on The Power of Music. Not only did she not run in the Fun Run held on that morning but she also is in the final stages of her PhD. so must have a busy life with plenty on her mind.

Stephanie started her talk with playing four pieces of music, pointing out that inevitably we would all react differently to them. Her involvement with music therapy has been with a wide clientele in Tasmania and the U.K. Her retelling of some of her experiences underlined her skills in all areas of music and therapy. During her most interesting and well delivered talk she played the guitar and sang a song she had helped a dying client compose for her grandchildren. A number of the group were looking for tissues during this. Stephanie played this piece at the funeral service of the client.

There was interaction and laughter too and a realisation that with the skills of an experienced music therapist there is much to gain.

Sheila Beamish

Comments from Leida:

The variety and order of presentations felt just right for me. The food was scrummy as always. A big hooray for the cooks.

Saturday;

-Christine's presentation was very good, a subject that I am very interested in and we could have many more sessions on it. It really got my brain going.

The quote "It is more important to know what kind of person has the disease than what kind of disease the person has" should be compulsory on everybody's toilet or bathroom door or somewhere where they can't miss it. Even if you have heard it before it is a very good reminder.

-Movement and dance with Glen. When I choose my activity for the afternoon I thought I would be doing a bit of frolicking around to music, so I got quite a shock when a real life ballet dancer walked in (even though he is retired). After some relaxing rolling around on the floor it got serious and there I was standing in front of this super-fit, elastic and graceful person, trying to stick my foot out gracefully, keep standing up straight and not laugh. I felt like a wooden puppet with very rusty hinges but I got a little bit untangled after a while. Then we put together a dance made up with movements like breaking water melons, Pinocchio starting the chainsaw and interacting with a partner while she was meant to be kind of wooden and not give, which was an interesting exercise. Lou Reed was singing a very jolly tune to keep up the rhythm. By the end of the session we were getting quite good at it all, my tummy hurt from laughing and everyone looked very happy and relaxed. It was very enjoyable and a lot of fun, I was even beginning to feel a little bit graceful, so may be I'll be a Margot (Fonteyn ) one day and I hope Glen will be back next year to teach us some more.

Fran's story was very moving, very personal and yet we have heard it before. It was happy and very sad because that most important part of her Mother's dying process was taken away from them. I hope sharing this helped Fran and is the start of a change.

Sunday;

As always Stephanie's session was very good and inspiring.

Our final hour, talking about Everyday spirituality was an excellent finish of such a thought provoking weekend.

Almond Biscuits

(These were very popular at the weekend. They are easy to make and are gluten and dairy free, so excellent to make for those friends with food sensitivities)

3 cups almond meal, 1 cup caster sugar, 3 egg whites.

Blend all these ingredients together. With wet hands, roll spoons full of mixture into balls, then sausage shapes, then form into crescents. Roll in flaked almonds. Place on WELL greased tray. Bake in moderate oven 15 minutes until light gold colour.

Cool on trays.

(Left-over yolks can be used in a proper custard, or crème brulee)

Recent additions to the Hospice library

A Social History of Dying Allan Kellehear

The "D" Word: Talking about dying Sue Brayne

Learning to Live, Learning to Die Susanne Atkins

Making the Rounds with Oscar David Dosa

If Only….Personal Stories of Loss through Suicide Belinda Woolley (ed)

The Good Listener: Better Relationships through

Better Communication Hugh Mackay

Vital Signs: Stories from Intensive Care Ken Hillman

Curtains: Adventures of an Undertaker in Training Tom Jokinen

We are also clearing out some old titles in the library – things that no-one has borrowed in years, but might be of use to someone – if you know of a good home, please come and collect them.

Book reviews

Vital Signs by Ken Hillman.

What a brave man to write the way he has about what goes on in ICU's. It’s a great read, but I’m not sure that is for everyone. Having a nursing background I can understand how it all works, not only the good parts, but the times when everything goes belly up as well. Though I have never worked in ICU, having a daughter-in-law who does has also given me some insight to the workings of them. Ken Hillman has a very humane understanding, and seems very honest in the way he explains how the doctors deal with the different situations that occur, using clear and concise examples of those situations for the lay person. He has a very compassionate understanding of the 'dying patient' and is not afraid to explain to relatives that they may have unrealistic hopes for their loved one.
In this area I felt the book is very well written, but I wonder how some people on the "other" side of the bed would react. I guess it depends on circumstance, as we said so often during our course.

Diana Bovill

Curtains---Adventures of an undertaker in training by Tom Jokinen

This book should come with a warning; Not For The Faint Hearted.

Tom Jokinen describes his initial work-experience in the undertaking business and then continues with extensive descriptions of every detail of his work as he becomes an apprentice. EVERY detail of collecting the deceased and then more exact descriptions of embalming and cremation and of course burial too. His personal life gives light relief but is all too brief.

I have had a fair bit to do with dead people but had been happily ignorant of cremation details and embalming is not a procedure we use much in Australia.

Having said all this I must add that after ploughing on with the book I became accustomed to the language and procedures and realised that his story is honest and devoid of pretence. The facts of death and subsequent preparation for burial/cremation are not softened for the reader and Toms ‘sense of humour is most welcome. He writes a good story and involves many interesting characters, both in the business and as clients who engage the firm he works for to carry out their burial requests.

Tom appears to have a fine sense of empathy and observation in his encounters with the families of the deceased. This ability then ensures many sensitive stories which also involve some very bizarre rituals and requests. The light –hearted record of these very human scenarios helps the reader understand and appreciate the many aspects of grief.

One thing I will never forget is a rule he made for himself; if you work in the funeral business, never lick your fingers!

Jane Daley

I would like to acknowledge the great work done by Julie Holmes, who has recently retired from volunteering, after 15 years of fantastic contribution. Julie was in the training group I was in as a participant when I joined Hospice in 1994. She started in Whittle, but was soon whisked out to a client in the community. Over the years, Julie saw probably 3 dozen clients, but she had some very long-term people too. I am sure her care and attention will always be remembered by the families of Sandra and Ken in particular, but there were so many others who valued Julie’s gentle kindness, her discretion and practical good humour. Other volunteers too have enjoyed Julie’s company at lunch-time meetings, (at which she was one of the most regular participants), at Hospice weekends and social gatherings. Julie’s stories at lunchtime meetings, very often involving the antics of the clients’ pets, entertained us many times.

I have really appreciated Julie’s willingness to take on clients, and especially her commitment week in, week out, visiting and supporting people. Julie’s regular attendance at meetings showed great support of Hospice, and of me, as Coordinator.

We miss you Julie, but we wish you a very happy and fulfilling retirement from Hospice – you have earned the rest.

Please keep coming to social events – you have many friends in Hospice who will alwaysbe delighted to see you.

Fundraising news

Back in March, Alan Hopgood’s theatre company came to southern Tasmania, and performed their play “Four Funerals in One Day” at the Playhouse Theatre. The short play gave an insight into the experiences of a young palliative care nurse – through conversations with her more experienced colleagues and in her contact with an elderly client – a man who saw no point in his continuing decline, and talked of euthanasia. The play was funny, insightful, and compassionate, and well acted by the small company. The panel discussion afterwards provided the audience with an opportunity to ask questions of palliative care providers (Paul Dunne, Fiona Jones, Angela Bresnehan and Jenny Fuller). The play was free to attend, and the audience donated generously to Hospice – and just over $500 was raised – mostly on that night, but also from the 4 rural performances which followed at Sorell, Triabunna, Nubeena and Swansea.

We have also received $685 in donations made at the recent funeral of Ruve Bishop, given to Hospice by her friends and family in her memory. Volunteers on Whittle will remember Ruve and thanks too, Leaf for your attention to her at home.

Educational Opportunities

Hospice is sometimes able to pay (at least in part), for volunteers to attend conferences and/or workshops. One such opportunity would be a workshop run by the Australian Centre For Grief and Bereavement, who provide usually three 1 day workshops in Hobart every year on a wide and varied range of topics related to grief and loss. The Centre also has an excellent website, with useful and targeted information, including their annual education calendar (ie dates when the workshops are in Hobart)   www.grief.org.au

If you’d like any further information, you can contact Lucia Ikin at the office on 6224 380.

A visit to Turnbull’s funeral home

So what to expect you wonder? Well, I was most impressed with the aspect of continuing the care of the individual and their family past that individual's death.

There was a respect for the time it takes to grieve and that the body could stay at home until all had a chance to say goodbye. There is no time limit except there may be some care issues past 24 hours which the funeral guys could help with. The chapels and facilities were very respectfully decorated and had a good feel to them. We were shown through some of the back-room facilities and told about some of the procedures used to care for the body. We also got to view the crematorium which was very modern and fully automatic in its operation. I left with the feeling that there is a lot that is done at every level to ensure the best experience possible for everyone concerned. I may never wish to be in the trade of funerals but I was most impressed by the overall professional nature of the "business" of looking after those who have died and their families at such a difficult time in life.

And on a lighter note:

Maurice and Mildred were on a Gold Coast holiday and Maurice said that he'd really like to have a helicopter ride. Mildred said, “Maurice, it costs $50, and fifty bucks is fifty bucks."

The next year they returned for another vacation and Maurice this time said, "Mildred, I'm 95 years old and I may never get another opportunity to have a chopper ride." But Mildred said, "You know Maurice, fifty bucks is fifty bucks."

The helicopter pilot overhead this and said that if they promised to be totally quiet and not utter a word, he would not charge them a cent provided they remained silent. So off they went.

The pilot took them on a ride to remember and showed them every flying trick in the book. When they finally landed he congratulated Maurice for being as quiet as a mouse, to which Maurice replied, "Oh I was going to say something when Mildred fell out, but 50 bucks is 50 bucks!"

FRIENDS of HOSPICE MORNING TEA

Wednesday 21^st July

  Blackman’s BayBeach Café

11am

All volunteers are welcome, along with your partners. We will be saying thank you to recently retired volunteers, as well as enjoying a winter morning get-together over coffee and cake. Please RSVP to Hospice by Monday 19^th.

Happiness and Its Causes

I went to this conference to get a bit of a ‘shot in the arm’ with some new ideas. The conference format - short, quick presentations (nothing longer than 40 minutes), from a wide range of speakers, interspersed with panel discussions, a cooking demo from Kylie Kwong, laughter yoga, and a kind of running commentary from the day’s chair person helps one to maintain concentration through a long day.   The radio national listeners among you will have heard some of the big name guests interviewed around the time of the conference (first week of May), and as an ABC listener/watcher myself, many of the panel discussions were facilitated by regular presenters whose voices or faces were very familiar. Here is a brief summary of some of the ideas that I found particularly interesting:

Barry Schwarz on The Paradox of Choice: Why More is Less

We live in a world where we are told more choice is good. Actually the more choices we have, the less satisfied we are. The longer we spend agonising over a choice, weighing up the advantages and disadvantages, the more likely we are to be disappointed by the thing we end up with. “…when we make decisions, experience the consequences and find that they do not live up to expectations, we blame ourselves. Disappointing outcomes constitute a personal failure that could and should have been avoided if only we had made a better choice.” Schwarz is not claiming that we’d be happier if we didn’t have any choices, but that as the number of choices we have increases, the psychological benefits we derive start to level off, and then decline when choice becomes overwhelming (eg 273 varieties of breakfast cereal are available in the USA).

James Fowler discussed the reach of happiness across communities. He has used the data gathered for the Framlingham Heart Study to look at social connections among the thousands of people in this longitudinal study, and found that happiness is ‘contagious’ to 3 degrees of separation, (as is misery). “While there are many determinants of happiness, whether an individual is happy also depends on whether others in the individual’s social network are happy. Happy people tend to be located in the centre of their local social networks and in large clusters of other happy people”

Edward de Bono (of Lateral Thinking fame) is now a quite old man, but with a sharp mind still. He advocates that we should teach people to THINK not learn – and studies of his model show an 80 -100% improvement across all areas of study for students who learn how to think. Among young unemployed people, and young offenders, functioning, attention, social connection, and a whole range of indicators show that improvements can be up to 500%, and recidivism reduced by over a quarter.

Other speakers included Kirsty Sword Gusmao, (on East Timor’s progress), Bob Carr on the joys of reading good literature, Petrea King on dealing with cancer, Hugh McKay on the importance of sadness in valuing happiness, Lindy Chamberlain-Creighton on forgiveness… and so it went.

The real take-home message (not really very new or revolutionary), was that it is connection with other people, with meaningful activities and balance between meeting our own needs and those of others that are the ‘secrets’ of happiness. Interestingly, none of the speakers made specific reference to the value of volunteering in relation to how we can maintain those connections and relationships, though we all know that to be the case! The book of the conference proceedings can be borrowed from me anytime.



Cultural Sensitivity

The Migrant Resource Centre recently hosted a one day conference in Campbelltown to address palliative care for clients of culturally and linguistically diverse communities, (including refugees)

There were some very interesting presentations.

Kiros Hiruy talked from his perspective as an Ethiopian refugee. The fundamental message was about how strong the sense of community is among many groups. This is summed up in the following quotes – “One who eats alone, dies lonely”, “Go the way that many people go. If you go alone, you will have cause to lament”

Community is central to each and every individual life –

It offers psychological security to the individual

In sickness, people expect to be taken care of at home, by the family and neighbours, and it is expected that people will give up their jobs to care for the sick. All family funds will be directed to the care of the sick person.

Respite is a totally foreign concept.

There is a fear of abandonment if patients are being treated in hospital so family will stay with the patient. Patients worry about the family (especially children) rather than about themselves.

There is no expectation of ‘paying back’ a favour – it is done because it is what you do – it is a duty and obligation and an honour to care.

There is a belief in the sanctity of life and a belief that life should be prolonged for as long as possible. There is no planning for death, so the idea of an advanced care plan is unintelligible.

Religious faith is very important (whether people are Christian or Muslim) in times of sickness, dying and death. It is important to seek forgiveness and reconciliation with others.

There is respect for authority (represented by the doctor), so they will comply with doctor’s direction.

If someone is healthy, they are expected to look after themselves and others and are not likely to be supported financially.

The other presentation of particular interest was from Sharon Andrews. Sharon is doing her PhD in nursing and is about to start a project with Menzies Centre and the Wicking Institute about helping nursing homes talk more constructively with families of residents with dementia in relation to their palliative care needs. At the conference she talked about how useful stories are as a way to understand a life - especially when talking with people from a non-Anglo background - what is important to people, and how that knowledge may help in decision making at the end of life. In listening to the story we may find out about the person’s values and beliefs, the meaning of illness, suffering and death, and about the relationships in their life. This may help us know who is/are the appropriate person/people to include in discussions. She gave a great example of the use of language – an indigenous woman talking about ‘finishing up’ – meaning doing her end of life talk and preparing for death.

‘Stories trap us, stories free us. We live and die by stories”

This presentation tied in very neatly with Chris Batten’s workshop at the Hospice weekend.

Web-Wizard needed

If you, or someone you know, is able to spend an hour or two each month updating our web-site with photos, news items etc, please discuss with Jenny or Lucia.

TRAVELLING FOR TOUCH

Those who know me will know that it is my passion to bring gentle, caring touch to people living with pain and incapacitating or life-limiting illness. I further hold the belief that everyone in the community should be able to access such touch, and not only those who can afford to pay for it. In my practice as a massage therapist, I more often than not, find that gentle, comfort-orientated massage can play an invaluable role in the management of pain and other symptoms experienced by seriously ill persons.

Recently I returned from a study tour to the USA, where they are leaders in integrating touch in health care. My main focus was the second Oncology Massage Healing Summit in BloomingtonMinnesota, hosted by the Society for Oncology Massage and NorthwesternHealthSciencesUniversity. Flying mainly solo in my work here in Hobart meant that the opportunity to meet up with my “tribe” in the place where oncology massage originated was an opportunity not to be missed. The message was clear: oncology massage has over the past decade become an essential aspect in the integrated care offered by many of the largest cancer centres (MD Anderson, Memorial Sloane-Kettering – to mention only a few). And at the heart of it also lies issues of social justice and universal access to such services, in a country where basic health care is not available to many.

Apart from a few technical massage workshops, I also used the opportunity of being in the States to visit and work with leaders in their field of massage in hospice, palliative and aged care. In California I worked with Dawn Nelson – who created COMPASSIONATE TOUCH for Those in Later Life Stages™ as an outreach Program for the elderly, the ill and the dying. Her unique modality has proven especially effective as an adjunct therapy in Alzheimer's and dementia care, hospice care and in nursing home settings. www.fromtheheart-hands.com). I also linked up with Irene Smith who began her pioneering work with cancer patients as a massage practitioner with the San Francisco Hospice in 1982. In 1983, she became the first massage therapist for persons with AIDS in the San Francisco General Hospital AIDS Unit 5A. Seeing the need for compassionate support, Irene trained a team of massage therapists to staff hospital units and residence homes for people with AIDS and became a voice for massage as an integral component to health care for other seriously ill populations. (www.everflowing.org)

The USA was never on my list of “must-visit” places, but I must confess it was an amazing journey at all levels. It was an unexpected joy to visit such a beautiful, interesting and vast country with genuinely friendly and positive people.

My sincerest hope is that this experience will enable me to liaise with existing health care services on projects that will bring this work to the Tasmanian community as a whole. I have brought home many resources and lots of info. If anyone is interested, please contact me at clamb55@bigpond.com.

Christine Lambrechts

HOSPICE REMINDERS AND MESSAGES

Please note: Lucia will be away in July, so Jenny will be working alone – please respond to messages as quickly as you can – you may need to use the mobile number as all client visits and meeting attendances will be covered by Jenny only.

REMINDER 1 - Please send in your timesheets for community volunteer hours. We need at least an estimate from all of you who have had client contact this year. Some of you will have received a summary sheet by email or included with this newsletter. Please fill it in and return it to me asap. Whittle and RHH volunteers don’t need to worry – we can get the stats from the communication books.

REMINDER 2 – Please let Jenny and Lucia know if you are going to be away, and also if you are available to take on a client over the next few weeks. Many people are away, so we need volunteers as relievers as well as for taking on new clients.