Q Tell us a little about ''Conversations that Count''.
A It is a programme involving volunteers that hold sessions in communities with the aim to encourage conversations about treatment and care at the end of life.
Q Where did the idea come from?
A From a series of workshops run in Auckland in 2011 with people who had either experienced the death of a loved one or were facing death themselves.
They wanted to promote thinking and talking about death and dying in their communities, but needed training and resources to do so.
Q What is advance care planning?
A Advance care planning gives people the opportunity to develop and express their preferences for end-of-life care.
It can give people peace of mind, reduce friction between family members and help people live life to the fullest.
It's not about planning for death, it's about planning for life.
Q What's your involvement in the Conversations that Count programme and are there others in Otago in a similar role?
A I am a volunteer Conversations that Count communicator; I do it in my spare time.
I am based in the Central Otago region, and am currently the only communicator in Otago.
Q Is Conversations that Count focused on funeral wishes or much wider than that?
A It has a broader base than just funeral wishes. In the first instance it is about having a chat with your friends and family and letting them know how you want to be looked after as you approach the end of your life; things like what you hold dear and how you want things to go.
Q Who does it apply to and why do you think it's so important for people to plan for end-of-life care?
A It is not just for those who have a serious illness; it's for anyone who wants to think and talk about their future care and treatment.
It works well introduced early so people have time to think about it and change as time goes on.
It's not a single conversation; it's a series of conversations.
It's about the time between now and dying.
When you are well and have plenty of energy is a good time to begin these conversations because when you're really unwell half the time you can't talk; you're too exhausted for whatever reason.
Q Are people comfortable with having that kind of discussion and do they ever get more comfortable about discussing it?
A Traditionally, New Zealand families are reluctant to think and talk about death and dying and the type of treatment and care they may want at the end of their lives.
Some people don't think or talk about that at all and many don't do so until they are very sick.
My experience has been that once the topic is presented in a ''safe space'' people are keen to learn about what is available to support them through the process.
Q Is your role rewarding and what kind of feedback do you get from people afterwards?
A I find the role extremely rewarding. An example of the type of feedback I receive is: ''The sessions have resulted in a ripple effect. Since attending Conversations that Count sessions I have been delighted with how I have thought about and written about my values and preferences.
"I have since talked with my brother about where important information about wills is held. My enthusiasm for thinking and talking about death and dying and the advance care planning process has spread to other family members.
"My mother has initiated a session with her coffee morning group. My father (who has health concerns) has been spurred into `preparation for death' action and clarified his wishes in the event of his future healthcare and appointed an enduring power of attorney.
"My stepmother has chatted with me and her daughter, who recently visited from overseas, expressing that she wants her ashes to `go home'. We now chat easily about such matters.''
Q Do you speak at meetings or how can people who are interested in the programme get in touch with you?
A I am available to speak at meetings in Central, but sessions may be held in a range of settings.
A recent one was in the home of a woman who invited her friends for cake and coffee as a preliminary.
The best way to get in touch with me to arrange a session is via email: communicationiscentral@ gmail.com
Susan McDonald's interest in helping people to prepare for the end started when she was a speech therapist working with seriously ill people. She explains why she volunteers in this unusual field ...
As a speech language therapist for years I worked with people who were very unwell, and saw the distress and anxiety of families left to make very difficult decisions without clearly knowing what their loved ones wanted.
I have also seen the empowerment and reduction in stress, anxiety and depression when end-of-life wishes have been known and respected.
Also, about 10 years ago my aunt, who had no partner or children, invited me to be enduring power of attorney for her health and welfare. We had several uplifting conversations about what treatment she wanted in the event of this or that illness, and why she felt that way (which was very enlightening for me).
I encouraged her to write down her wishes should she become unwell and not be able to speak for herself.
I was with her when she received her cancer diagnosis and the conversations continued in more detail, including how and where she would prefer to die and what she wanted after she died.
Then, when I was contacted after she had a stroke and was unable to speak or make decisions, I was able to act confidently on her behalf and work with the medical team to make the treatment decisions that I knew she would have chosen herself.
When my aunt died other family members sought to be involved with decisions about her funeral and burial.
Fortunately, we had a handwritten and signed letter stating what she wanted, which to a large extent superseded what may have been an unhappy division within the family.
I want to be of service in assisting to reduce the stress, anxiety and disharmony ill-health, death and dying may cause - by assisting people to positively prepare ... and as a result to live life more fully.
Advance care planning - what is it?
• Discussing and sharing plans for future healthcare with family and healthcare professionals.
• Can include conversations about illness, prognosis and treatment; death and dying; treatment preferences, now and in the future; and writing down values and beliefs to inform treatment decisions now, or for a time when a person is no longer capable.
Support agencies
Agencies that support or help promote the programme
• Southern District Health Board
• South Island Alliance
• National Advance Care Planning Co-operative: www.advancecareplanning.org.nz
• Conversations that Count: www.conversationsthatcount.org.nz
