National Palliative Care Week reminds us that life and our loved ones are very precious.

In the busy-ness of day-to-day life, we can take both for granted. Take time this week to communicate with loved ones.

Avoid regrets – share what is too important to be left unsaid. Share your wishes about your care, to guide decisions if you are no longer able to make them.

Starting the conversation…

You can start in a light-hearted way:

• Sharing your “bucket list” – “before I die, I must…”
• Sharing what is important in just 6 words, for example:

“Jokes bad. Hugs great. Love forever.” 78-year-old wife to her husband.

“Mum. I ‘ll be there for you.” 26-year- daughter to her mother.

“I want my family with me.” 65 year old man to his wife and children.

” No hard feelings. Forgiveness. Love.” 50 year old  to mother of his children.

“Go quietly, no fuss, no machines”  88 year old  man to his son.

Continuing the conversation …

Once you’ve broken the ice, you can talk about your future care wishes  – where you would want to receive care, what goals you would want to guide the care and treatment you receive; who you would want to be with; what kind of funeral you would want.

It is much easier to share your wishes when you are well than for your loved ones to guess what they would be at a time of crisis and when emotions are running high.

Write down your wishes

Keeping a record of your wishes can be very helpful for those you love and for those providing your care. It helps people to remember accurately what you want and makes it easier to communicate your wishes to doctors and nurses who don’t know you. This is sometimes called an “Advance Care Plan”. Click here for more information about this,

Palliative care provides comfort, care, respect and dignity

It is reassuring to know that palliative care services are available to enable you to have the best quality of life up until your last moment, and to die well.

Palliative care aims to provide the best quality of life for a person living with a life-threatening illness and their family.

“You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but to live until you die.” (Dame Cicely Saunders, founder of palliative care)

To celebrate National Volunteer Week – 14 to 20 July 2012 – Palliative Care Victoria has recently recorded interviews with Jennifer, a trained volunteer biographer at the Eastern Palliative Care Service and Cassandra a palliative care patient with motor neurone disease, to help others understand the value of this work.

Jennifer met with Cassandra over 10 sessions  to record, edit and write up her life story for Cassandras children and grandchildren,” to help them know what life was like in my days.”

“I rediscovered memories- it’s like opening a Pandora’s box and you start thinking of other things like my travels. It’s amazing to reflect on your life which has been locked away for so many years,” Cassandra says.

“You normally don’t have time to remember the little bits and pieces of your past, and when you go back to remember it gives you a nice feeling inside. When you reminisce you reconnect with your parents, sisters and brothers from years back.”

Cassandra plans to invite all the family around to surprise them with individual copies of her life story. “Although you all live as a family you don’t really take notice of what mum and dad did before, you only have titbits.”

Jennifer volunteered to be a biographer, following a career in health and social work, including advance care planning.

“My father spent a lot of time reflecting and writing about his life, and it made him a lot calmer and peaceful towards the end of his life,” she remembers.

Cassandra was her first client, and Jennifer helped to record, edit and organise her story.

“It was a privilege for me to have the means of helping her get her story down. Cassandra showed a sense of humour and courage. We had to discuss her illness but although that was sad, we ended on a high note, as Cassandra felt she would always be there in an afterlife.”

Click here to listen to the interviews.

Eastern Palliative Care Service has 130 volunteers as important members of its palliative care team working for one million residents in its catchment area. They are among more than 1700 trained volunteers working in palliative care across Victoria to improve the quality of life of people living with a life-threatening illness and their families.

It reminds us that life is precious and the importance of showing how much we care to people living with a terminal illness, their carers and to bereaved family, friends and colleagues.

The following practical suggestions have been suggested by the National Hospice and Palliative Care Association in Canada:

• Acknowledge the day with a phone call or card to the family.
• Tell a story you remember about the service member who has died and/or ask the family to share a story. Keeping their loved one’s memory alive is an important part of healthy grief and coping.
• Offer to accompany or take the grieving person to the cemetery or other place of remembrance; people are sometimes reluctant to take advantage of such opportunities alone and will appreciate your thoughtfulness.
• Make a donation in memory of the person who has died to a charity that was important to the service member or the family.
• Listen. Sometimes the greatest gift we can give is to listen to what others think and feel. Supporting those who are grieving can be as simple as lending an ear or holding a hand.
• Acknowledge your own feelings; share the range of thoughts and emotions you experience with someone you trust, but not necessarily with the grieving family. Whether it is pride or shame, grief or hope, sharing these feelings is important.

Visit the Grief and Loss section of this website for more information.

Awards Available

Four awards are available to  specialist palliative care services in Victoria for outstanding quality iniatives that improve the quality of life and experience of people living with a terminal illness and/or carers, including bereaved carers.

A fifth award will recognise an outstanding quality initiative that enhances the provision of high quality care using a palliative care approach by an aged care service in Victoria.

The award winning organisations will each receive $1,000 and Award certificates, as well as recognition via media releases and inclusion in Palliative Care Victoria’s newsflash and quarterly newsletter.

Panel of Independent Judges

Five highly regarded independent judges will select the award winners:

• Australian Council on Healthcare Standards (ACHS)
• Department of Health Victoria, Palliative Care
• Quality Improvement Council (QIS)
• Victorian Healthcare Quality Association (VHQA)
• Professor Sue Hanson, who played a key role in developing the national palliative care standards and now the National Manager of Palliative Care Services for the Little Company of Mary.

Further Information:

Applications are invited from current members of Palliative Care Victoria and close on 29 June 2012.

Further details about the eligibility criteria, application process and award selection criteria are available at:

• www.pallcarevic.asn.au/
• www.pcvlibrary.asn.au – you will need to log in to the PCV members’  area and visit the quality initiative space, which includes information about the awards.

■Now What? When your parent’s cancer can’t be cured

■Now What? When your sibling’s cancer ca’n't be cured

The books follow a young person’s journey from finding out that a parent or sibling’s cancer is life limiting, through palliative care to the end stages, funeral and early bereavement.

They aim to reduce feelings of stress, anxiety and loss of control by helping the young person to express their grief, manage the changes in their life and understand some of the things that may happen as their family member nears the end of their life..

The topics covered include:

• Dealing with uncertainty, hanging on to hope
• Expressing feelings, understanding, grief and loss
• Conversation starters, talking about dying
• Collecting memories and saying goodbye
• Physical changes at the end of life
• Funerals and the early stages of bereavement

Stories and quotes from other young people are shared throughout the books, connecting the reader to other young people who have been through a similar experience and helping them to realise that their thoughts and feelings are normal.

The books are available to download from www.nowwhat.org.au or call 1800 669 942 to be sent a free copy.

Palliative Care Victoria also met recently with the three members of the National Palliative Care Quality Collaborative: CareSearch,  the National Standards Assessment Program (NSAP), and the Palliative Care Outcomes Collaborative (PCOC) to discuss ways that we can work more closely together in Victoria to promote quality leadership.

Share information and collaborate on quality initiatives!

The PCV Members’ space in our new online library www.pcvlibrary.asn.au has a space devoted to quality. It includes resources such as the NSAP standards, PCOC benchmarks, VPCSS survey questions and the Victoria palliative care strategic directions. It also has a register where you can add information about quality improvement initiatives you are undertaking to prompt information sharing and collaboration. The register enables you to link to the relevant standards, benchmarks, etc. You can also offer suggestions or comments on quality initiatives in the register.

Video & Guide for PCV’s Online Library

There are short videos and a guide to help you use the PCV Members’ space- visit: http://www.pcvlibrary.asn.au/display/wel/Support. We have sent out usernames and passwords to the key contacts of organisation members and to individual members.

PCV Quality Initiative Awards – Early Notice

We will be inviting applications for 5 Palliative Care Victoria Quality Initiative Awards at the end of March, with applications closing on 29^th June 2012. The award winners will be selected by a panel of independent judges and presented at our Conference on 24^th August 2012.

Helen, a palliative care volunteer for over 15 years, describes helping a man with motor neurone disease who was receiving palliative care in an aged care facility.

She describes his physical deterioration and how she was able to bring him some physical comfort and relief with foot and hand massages, and emotionally and spiritually, discussing his moving towards death or as he described it – the last page. As a volunteer Helen knew his death was inevitable but that she had made the most of their time together. She reads a moving tribute she wrote for him after his death.