Talking About Dying & Advance Care Planning

1. Talking About Dying & Advance Care Planning Dr Monika Wilson ReConnections reconnections@monikawilson.com.au “No decision about me, without me”

2. Health System Reform (2010) • The language of death and dying needs to be placed back in everyday conversations. • Make it normal to talk about death and dying. • Promote a culture change and a flexible system that would ‘allow’ health professionals to engage in conversations about death and dying. • Make end of life care everybody’s business. • Palliative and end of life care can provide a meaningful response to some people’s fear of death and the deeply held anxieties this evokes, i.e. a sense of vulnerability, helplessness, insignificance and uncertainty. • The reality of dying—can’t guarantee a ‘good death’ but should be able to guarantee ‘good care’. • Need to improve public awareness of death and dying issues.

3. National Palliative Care Week (19-25 May) Palliative care … everyone’s business. It’s important that Australians who are approaching the final stages of their lives are aware of what care and support is available to them, can make choices and have control over their care, and are confident their choices are known and supported by their loved ones and health professionals. So, we’re urging Australians to have a conversation with their loved ones about their needs and wishes with the theme: ‘Some things are too important to be left unsaid...let’s chat about dying’

4. Why?

5. What are the barriers? “I was waiting for my doctor to raise the issue” “That’s too hard” “Another day …”

6. Advance Care Planning • All adults with decision making capacity have the right to have a say in their health care, now and for the future. • Decision-making about medical treatment needs to involve being fully informed about the medical condition and benefits and burdens of treatment. • ACP involves thinking about and discussing with doctors, family, carers, and other important people, the medical treatments wanted or not wanted if you or the person making the ACP were unable to communicate or make medical decisions and were seriously ill, had an accident or were dying.

7. Advance Care Planning • It is a written or verbal record of a person’s choices about their future medical care. • It can include: • Nomination of another person to make decisions (attorney) • An oral discussion • A letter written by the patient documenting their choices • A Statement of Choices or Wishes outlining future medical treatment wishes and psychological, environmental, social and spiritual requests • An ongoing process …

8. Advance Care Planning • Life sustaining treatments: • Any treatment used to attempt to prevent a person from dying … to replace a particular biological function and are often used in circumstances where recovery is expected, and thus the treatment is usually temporary. • Understand that there is often no ‘right’ answer • Potential benefits and burdens – for each particular situation • Fit with life goals, values and beliefs • Right to decline

9. Considering Capacity • Can the person • Understand information • Communicate a decision • Weigh up risks and benefits of choice • Take responsibility for their choices

10. BMJ (2010) The Impact of ACP on end of life care in elderly patients • Coordinated ACP improves end of life care • ACP reduces the incident of anxiety, depression and post-traumatic stress in relatives • ACP improves patient and family satisfaction with care

11. Self Awareness What do you wish or hope for your own end of life process/experience?

12. Dr Peter Saul (Senior ICU Specialist), 2010 “None of this will happen by accident (people dying in the best way possible) … everything is different now … with the medicalisation of the dying process means that choices will have to be made and these choices apply to all of us … and therefore the more prepared you are to take this on, the more likely you are to have something happen that is consistent with you life … and I think that’s what we all deserve”.