An Evening of Palliative Care Tales

Tales from the Edge

On the 25th of November at the Orange City Library Dr Frank Brennan an internationally renowned Palliative Care physician read a collection of stories at the Orange City Library he has written based on his experiences working with people with the diagnosis of a life limiting illness. These stories inspired hope and resonated with compassion and humanity.

Dr Frank Brennan is a Palliative care Physician who currently works in Sydney at Calvary Hospital. He has an interest in all aspects of Palliative Care including how story telling and the humanities illuminate this area of human experience.

He has written a series of narratives drawn from his work with the dying; several of them have been broadcast on ABC Radio and published in the Griffith Review and Australian Financial Review. He has worked in Palliative Care for many years in Ireland and Australia.

The Evening was a great success Dr Brennan read his stories out to an audience of about 30 people. The stories seemed to cover the spectrum of Palliative Care experience and they all revealed a deep sense of compassion that underpins Dr Brennan's approach.

Stories also included Dr Brennan experiences of palliative care overseas, in Timor and Africa. These were moving vignettes of the experience of Palliative Care in communities were the need is high but resources shamefully low. For me what was striking about these stories was the support that dying people received from their communities.

Dr Brennan's stories not only painted pictures of the people but also of their environment, so as I listened to the stories I found myself imagining the surroundings, this made the stories feel so much more concrete. The stories highlighted for me also the range of emotions that can be experienced in working in Palliative Care. The sadness is always there but this is so often offset by the laughter and humour that as Palliative Care clinicians we experience when working with the dying and their carers.

This humour comes from a very deep place and for me rests on a foundation of courage nourished by love and as a Palliative Care clinician I can say that to experience this is a privilege.

For me one of the highlights of the program was the support we received from Orange community. Special thanks to Angela Owen from the local ABC who interviewed Dr Brennan and broadcast his stories over the week preceding the evening. Thanks to the staff at the Orange City Library in particular Jasmine Vidler and Elizabeth Barry who provided the venue and stayed back to help support the evening. Catherine Rogers from the Greater Western Area Health Service media unit also provided invaluable support in the promoting of this event.

If you would like to hear Dr Brennan's stories you can follow this link to the ABC blog
http://blogs.abc.net.au/nsw/central_west_mornings/index.html

Mindfullness Meditation

You are invited to Mindfullness Practice. A four week programme commencing on Tuesday 10th November to Tuesday 1st December 2009. Costs: $40.00 to attend the whole program.

Sessions will run from 10.00 am -12.00 noon on:

1.Tuesday 10th November

2.Tuesday 17th November

3.Tuesday 24th November

4.Tuesday 17th December

The sessions will be held at Centacare: 107 Willliam St, Bathurst, NSW. Telephone 63318944.

Ask for Sandy Dengate for more details. The sessions will be run by Margret Wilson who has trained extensively in the Mindfullness Technique.

Mindfulness Meditation is about learning to experience life fully as it unfolds—moment by moment. One popular misconception about meditation is that it is a way to make your mind blank so you can escape from what you are feeling. However, author Dr. Jon Kabat-Zinn wants you to understand that meditation is an invitation to wake up, experience the fullness of your life, and transform your relationship with your problems, your fears, and any pain and stress in your life so that they don’t wind up controlling you and eroding the quality of your life and your creativity.

It is not about running away, or manipulating mental states.Through the practice of mindfulness, you can learn to develop greater calmness, clarity and insight in facing and embracing all your life experiences, even life’s trials, and turning them into occasions for learning, growing and deepening your own strength and wisdom.

Motor Neurone Education and Information Day's

The Motor neurone Diseaese Association of NSW have organised 2 really exciting education and information day's on the 13th and 14th October 2009 planned at the Orange Ex- Services Club, 241 Anson st, Orange

The Information Day: On 13th October; for people with MND and their families has been organised as part of our current focus on providing special educational programs for people with MND, and their carers living in regional NSW.

What you will learn:

By the end of the day you will know more
about:

• motor neurone disease
• the role of Community Options Projects and
the MND NSW Family Support Service
• how to access important support services
and benefits
• specialised equipment to help maintain
independence and care at home
• breathing difficulties in MND and how these
can be managed
• gentle massage and its benefits
•
You will also have the opportunity to:
• ask questions
• share ideas and experiences with others in a
similar situation

MND Directions in Care: has been organised as part of our current focus on providing special educational programs for health and community care professionals in regional NSW.

What you will learn:

By the end of the day you will know more
about:

• MND and recent trends in MND research
• breathing difficulties in MND and how these
are managed
• the role of MND NSW Family Support Service
• specialised equipment to help maintain
independence and care at home
• palliative care and its role in supporting
people with MND
• Community Options Services and
coordination of care for people with MND
• managing speech and swallowing difficulties
in MND

There is no charge for you to attend these program but to reserve your place you will need to to register.

For further information about the program please contact:

Jenny Judd, Regional Advisor
or Gina Svolos, Manager, Family Support
MND NSW.

Phone 1800 777 175 or 8877 0999
jennyj@mndnsw.asn.au
ginas@mndnsw.asn.au

Palliative Care 2009 Perth Conference

Together ! Cultural Connections for quality care at the end of life.

I just got back from the 2009 International Palliative Care Conference held in Perth Thursday 24th -Sunday 27th. The conference combined the 10th Australian Palliative care Conference and the 8th Asia pacific Hospice Conference and there is no doubt that this conference provided a rare opportunity for so many representatives countries to get together and look at Palliative Care from a very broad international perspective. 35 countries were represented with over 1250 delagates attending. I heard that there was over 325 speakers.

The topics discussed represented the broad range of concerns in Palliative Care from the development of national and international standards, policy and economic descision making, symptom control, complementary therapies, psycho social, spiritual concerns, non malignant palliative care, aged care, Carers, HIV/AIDS, paediatric care, models of care, clinical issues, public health, rural Health challenges, grief and bereavement, cultural connections, Indigenous connections, ethics and law, creativity in palliative care and symptom management.

Ggreater Western Area health were well represented in the speakers. Myself (James Daley), Christine Symmington (Palliative Care Nurse specialist Forbes) and Mellissa Cummings (CNC Broken Hill).

I talked about this blog in a talk titled "Expanding Worlds: Creating a Cyber Palliative Community in the Bush.", at the conference I talked alot about this blog and it's potential. The aim of this blog is to try and offset the social isolation experienced by those with a terminal illness and their carers by creating a space on the internet where participants can share their experiences in a supportive space. I also talked about the useful links that are also incorporated into the site. My talk was very well recieved and I found that it connected with other peoples work particularly in Victoria.

Mellissa talked about a case study entitled "Lils" Story which (Mel was given permission by the patient's family to talk about this culturaly sensitive topic ) examined the journey of a 34 year old Indigenous woman, diagnosed with metastatic cancer of the cervix when heavily pregnant with her 7th child. Melissa presented the case using photographic images of the Broken Hill landscape as a visual background to to the verbal presentation. The presentation highlighted the issues that arise for cancer and palliative care patients in rural and remote communities. One of the startling revelations of this talk was the fact that "people living in remote NSW diagnosed with cancer are about 35% more likely to die as a result of their cancer in the first five years, than people in areas with greater access to services" (Jong et al 2004)

Christines presentation was entitled "How do we improve access? Making the Palliative care service more accessible for Indigenous people.  Working from the fact that Indigenous clients are under represented in the referral to Palliative Care service.

In consultation with local Aboriginal health workers strategies were developed to improve understanding and access for Indigenous clients. One of the strategies involved the development of a brochure titled "Palliative Care for Indigenous Australians" which was developed with the assistance of local Aboriginal artists.

I came away from the conference with many ideas I was particularly impressed by the need to develop palliative care's presence in the support of patients with non cancer life threatening illness's, a new value's based approach to education in Palliative Care, the role of community development in extending palliative care services ability to help people in remote and rural areas (which is a public health approach to palliative care), the increasing utilisation of complementary care in supporting palliative patients and their carer's and also the increasing use of the creative arts in helping support patients.

The whole conference experience was quite overwhelming at times, I was struck by the respect that every body showed to each others work and the enthusiasm that participants shared there findings with each other. Listening to speakers from developing countries talk about how they manage to deliver palliative services to huge populations on very little resources reminded me that our committment to each other and those we serve is our greatest resource.

The Dying Man and the Vulture

Hi Everyone

In this poem Kahil Gibran creates an inner dialogue between man and death which shows a process of acceptance of death and the letting go of life. For me the poem captures the essence of a peaceful/natural death based on acceptance and faith in nature. Although the "Agony Overwrought" sounds like he needed an earlier referral to his local palliative care providers for good symptom control!!

This poem offers much to reflect and ponder on and has so much beauty and strength I thought I would share it with you.

I'd be very interested in hearing anyones comments on this poem.

THE DYING MAN AND THE VULTURE

Wait, wait yet awhile, my eager friend. I shall yield but too soon this wasted thing, Whose agony overwrought and useless Exhausts your patience. I would not have your honest hunger Wait upon these moments: But this chain, though made of breath, Is hard to break. And the will to die, Stronger than all things strong, Is stayed by a will to live Feebler than all things feeble.

Forgive me, comrade; I tarry too long. It is memory that holds my spirit; A procession of distant days, A vision of youth spent in a dream, A face that bids my eyelids not to sleep, A voice that lingers in my ears, A hand that touches my hand. Forgive me that you have waited too long. It is over now, and all is faded:

The face, the voice, the hand and the mist that brought them hither. The knot is untied. The cord is cleaved. And that which is neither food nor drink is withdrawn. Approach, my hungry comrade; The board is made ready. And the fare, frugal and spare, Is given with love. Come, and dig your beak here, into the left side, And tear out of its cage this smaller bird, Whose wings can beat no more: I would have it soar with you into the sky.

Come now, my friend, I am your host tonight, And you my welcome guest.


Kahil Gibran

Black Fellows Hands Cave

Heres a Picture of the two beautiful gaurdian spirits of the Black Fellows hands Caves in Lidsdale not far from Portland. My wife Sue took this photo last weekend when we went on a little photographic expedition into the area.

On the way to work!

Hi

I took this photo this morning on the way to work. It was taken on the Sunny Cnr rd near Portland. It just reminds me of what a beautiful place we live in.

Cheers

James

Palliative Care Gala night and Professional Development Forum

Hi

I've just had an amazing couple of day's. I attended the NSW Palliative Care Gala night on 28th. It was held in the Holme building at Sydney University. It was a bit weird for me because it brought back powerful memories of me as a 20year old wandering around (1978-1980) the university with not much of clue trying to complete a fine art's degree. It just didn't happen I completed 2 years and dropped out. But so many good memories of friends and doing really silly things, fun things. Better to have loved and lost than never loved at all!!

The Holme building has that old style university feel, it reminds you of the "Hogwarts" panaled walls covered by old dark oil paintings ( Isaw a John Passmore which I liked) Panaled walls. On the back wall was a huge mural. It reminded me of Michelangelo's last Judgement, (without the judgement, angels, demon's and God) all about human progess through academic achievement despite all the hardship etc. It was a very grand setting.

James Valentine was the compare and he was very entertaining! He payed for a little while in his jazz ensemble. Linda Hanson (one of the organiser's) sang a beutiful "Georgia" The minister of Health was there John Della Bosca. He said that he had a 1954 Les Paul and that he should of brought it all long! I can't remember alll the categories for the awards but Dr Richard Chi the director of Sacred Heart Hospice in Darlinghurst got the award for innovation in Palliative Care.If you are really interested I think if you go to the Palliative Care NSW site (It's one of our links) they will probably post more details. It was lovely to see that Claudia Guigni and Sue Netherwood from our area nominated.

The education day was one of the best I'd attended it started off with a talk by Dr Frank Brennan on the role of Palliative Care in Renal medicine. We had talks from other prominant physicians, Pain Specialists, Intensive Care, interesting research on the impact of Loss and Grief on Palliative Care Staff, Paediatric Palliative Care, Pain Management in Patients with drug dependency and Advances in the treatment of Brain Metastases. It really highlighted for me the range and diversity of issues areas of medicine that palliative Care intersects with. The issues surrounding death and dying really are everyone's concern. The day was a huge success thanks to Joan Ryan and her team for all the hard work organising the day.

I spoke to Janeen Folfani about the Blog and what we were hoping to do to develop and expand it's potential. Janeen who through PEPA funding helps to promote Paliative Care through education, placements for health professionals and other events which promote the understanding of Palliative Care. She has agreed to help fund our writing workshops. That is so exciting!!

I better wrap, it's Saturday morning and my wife is trying to get everyone organised, house tidy so we can get on with the day. I'd love to hear from anyone interested in the blog, Christine has made it so easy to post a blog just click on the link! And if you get a chance have a go at completing the evaluations it will only take a few minutes and it will give us an indication as to how the blog is working for people. I've got to go.

Look forward from hearing from you!

James

James

Hi

It's a cold and foggy day to day. Christine and I are very excited about the potential of Waving Not Drowning in the last 24 hours 32 people have visited the site and we can't wait to actually start to see the posts arrive!

Communication can be empowering especialy when your communicating to people who understand what you are going through and who have the information and understanding that you might need to help you through a difficult time!

At the moment Christine and I are collating all the contacts of the support groups in our area ie the Southern and Eastern clusters of the Greater Western Area Health Service (which is quite an undertaking given the fact the area encompasses places such as Totenham, Tullamore, Lake Cargelligo in the southern area to areas such as Oberon, Blayney in the eastern end.) We hope that getting this information all in one place online will make it easier for people to access the groups in their area .

If you can think of any groups in your area that you think people may be interested in let us know about them, you never know it might be just the group that someone needs to know about.

Today I am off to Sydney, the NSW Palliative Care group is having a Gala dinner, then on Friday I'm attending a Palliative Care education day. It's a very busy time.

Over the last 3 days the Bathurst Palliative Care team (Nurses and Volunteer's have been manning a Palliative Care Awareness table at Stockland Mall in Bathurst. It was a very interesting and rewarding experience for all involved. People stopped and were able to talk about situations that were troubling them. One person's relative was dying in another Australian state and she was very unsure about what she could expect from her family, we were able to talk to her about our experiences of similar situations and provide her with reading material and other contacts. After talking to us for about 30 mins she felt alot more able to deal with her difficult situation. The table was so successful that we intend to run it once a month for 3 hours. Once we have organised I will post the details on the blog.

Hope to hear from people soon


Have a wonderful Day


James

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