‘When people not used to speaking out are heard by people not used to listening then real change can be made’

John O’Brien (2007)

For over five years I have been a volunteer consumer representative at Central Bayside Community Health Services and often attend forums and workshops run by the Health Issues Centre. On Friday morning, I caught a train into the city to take part in a focus group about Advance Care Planning. As I’ve mentioned before, participation in events like this is a way of giving back, or contributing to a health system that despite its flaws, saved my life. Hopefully, the system improves when many different opinions are considered and ordinary people stay engaged.

The discussion about planning for future health care needs and end of life wishes an apt one, considering I have a friend from university days currently undergoing palliative care and I know several others with failing health or with relatives in similar situations. All part of growing older I know, although I don’t want to be accused of being ageist.

The Health Issues Centre has been funded by the Department of Health and Human Services to talk with community members about their experiences of planning for future health care. How people want to be treated when they become ill, issues around the end of life, and if you have started to have this conversation with partners and family, what challenges have been discovered.

They have also been asked to test an internet-based tool that helps to identify personal values and record wishes regarding treatment. E-health is developing rapidly with the aim that most people will have an electronic file of their health information that can be accessed from anywhere in Australia. Your wishes about what treatment you want and what you will refuse can be noted.

Participants in the focus groups regarding Advance Care Planning discussed several questions:

• Do you think about your health care needs into the future?
• If time was limited, what treatment approach would you want?
• Are you responsible for making sure someone else’s future health care needs and wishes are met?
•  Would you use an online tool to help you identify your wishes for future health care?

The group I attended were all Seniors and over sixty years of age – a demographic bombarded with advertisements about future lifestyle and health care needs. The Health Issues Centre, in partnership with Cabrini Health, ran the focus group and we discussed issues around planning for future health care. The information collected will be used to guide the work of the Department of Health and Human Services in relation to advanced care planning for Victorians.

‘Making sure you receive the health care you want’ was the central point of our roundtable discussion.

• What are your concerns around life and health as you grow older?
• Is there more to healthcare than keeping people alive?
• If time was limited what treatment approach would you want?
• What information and support would you need to plan your future health care?
• If needed, do you have someone who could advocate for your wishes?
• Have you shared your wishes with someone you trust?

The discussion recorded, and once transcribed, participants promised a copy of the main points raised.

We certainly gave the facilitators something to think about, beginning with challenging the title ‘Advance Care Planning,’ which appears to be interpreted by most people as end of life planning. One participant commented she was ‘getting older, not old!’ Preparing for health and lifestyle changes as you age does not, and should not, begin and end with palliative care issues.

I suggested more positive words would still let people know what the information was about. ‘Future Wellbeing’ or ‘Caring (or Preparing) for the Future’ would extend the discussion to everyone, not just seniors. After all, no one has a crystal ball and disease or accident can strike at any age and an advance care plan needed. Young people should be involved in the conversation.

In my writing classes I have several young people with an acquired brain injury because of car accidents – they need to be involved in planning for their future healthcare.

Although we were all seniors on Friday, there was diversity among the participants and our life (and death) experiences considerable. Everyone had thought deeply about growing old, everyone wanted to avoid a nursing home, and all, without exception wanted ‘death with dignity’ legislation. Several had already lost partners or other family members with positive and negative experiences of the health system. Some had a Living Will in place or Medical Power of Attorney.

These discussions need to happen and it is an important initiative. I was shocked at stories of elder abuse, the vulnerability of people relying on family members only interested in property or bank accounts. A representative from a multi-cultural organisation offered examples of elderly people being easily manipulated by grandchildren more fluent in English.

At one stage, listening to anecdotal evidence, I thought I must be unusual because I have a strong loving relationship with my two daughters and trust them implicitly to care for me if ever needed and to carry out my end of life wishes. In fact, because of what happened during my treatment for breast cancer, they already had to make decisions for me, run the household and deal with finances. However, it’s obvious not everyone has such comfort.

If you need more information and guidance or are worried about your health needs the following websites and phone numbers will be useful:

Council of the Ageing (COTA) 1300 13 50 90; www.cotavic.org.au
Advance Care Planning Australia www.advancecareplanning.org.au
Better Health Channel www.betterhealth.vic.gov.au (search for advance care plans)
Office of the Public Advocate 1300 30 93 37; www.publicadvocate.vic.gov.au

As well as varied experiences with family, participants shared their lack of confidence negotiating legalities like power of attorney, writing wills and the various cultural sensitivities around ageing, ill-health and dying. There was a role for government, especially the Departments of Health and Justice to ensure the best advice and assistance is available, if needed. Some people may be in a relationship where a partner refuses to discuss failing health, facing death and the future. Living in ‘the now’ or fearful that discussing deteriorating health may tempt fate!

I hope negative feedback about the general attitude of health care professionals towards older people will be addressed. Tales of GPs and others, showing lack of respect, being patronising and not listening properly, made me grateful I have good rapport with my GP, enjoying excellent care for over 20 years. Along with me, only one other participant, would go to the GP as the point of entry into Advance Care Planning.

People with mental health issues and those who can’t make decisions for themselves, need an advocate and definitely need a document guiding healthcare professionals, specifically in regard to surgical operations and whether resuscitation is desired.

Participants feared that nursing homes and hospitals may revoke any advance care plan, which indicated this conversation has a long way to go and dissemination of information must be a priority. Everyone acknowledged there was a need for better health literacy and many brochures, documents and websites need to be rewritten for clarity and understanding.

The meeting went over time even although the two facilitators did an excellent job of keeping everyone on topic. The group proved that people are interested in planning for future healthcare and have ideas about how to go about it. I’ll be interested to read the transcriptions of all the focus groups, although I’m aware many people are excluded from similar conversations because we have a two-tiered health system – private and public. It may be more subtle than in the United States, but your bank balance does count when it comes to choosing healthcare in Australia. Waiting lists can miraculously shorten if you have private health insurance. Money can give you a choice.

I met several interesting people and gained insight into behaviour and areas  I didn’t know a lot about. Grateful for being given the opportunity to be heard, to share my story and thoughts, and hear the thoughts and stories of others, I look forward to hearing more about the Planning for Future Healthcare Project.

In the meantime I’ll  register my plan for easy access on E-health – access I hope won’t be needed for a long time in the future!