Planning for end of life

Planning for end of life

A blog post written by Judith Leeson AM

In Australia many of us who are now part of the ageing community still see ourselves as resolutely independent, wanting to retain control over where we live and how, making sure that what matters to us informs our choices, and that our values are respected. Some of us were born during the Depression, World War II or in the years following, and are no strangers to living in times of uncertainty.

Others have fled war torn countries, migrated here and shared in the benefits that come with hard work, initiative, determination, careful planning, and our love of our country. We share qualities that enable us to strive for ourselves, our families and our communities, and contribute with our Indigenous citizens the vital strengths, skills, and values that enable the growth and development of our Nation.

Living in uncertain times can have a positive effect on our ability to develop resilience, plan a pathway to continuing health and well-being, cope with the unexpected, and tolerate events over which we have little or no control.

We all hope to age well without loss of health, security, and a level of control over what matters most to us. However, we can neither predict our rate of ageing nor whether we will experience life-limiting or catastrophic events which challenge us to review our planning for the end of our life.  

While we are enjoying our independence, living at home, ageing in place, setting our priorities and making decisions about what matters to us, we also need to commence our planning for unexpected and unwanted events which may limit our future ability to make choices or even to ask someone to act on our behalf. Distressing as this scenario may be, it is even more distressing if we have not made and conveyed our choices and preferences for our care to someone we trust and given them the power to inform and negotiate with those who will care for us.

My own experience of a sudden and potentially fatal illness last year showed me just how unprepared I was to delegate my preferences about a range of options from rehabilitation, out of home care and end-of-life palliative care: I had no Advanced Care Directive, no funeral plans, no family discussions about death and dying, and no idea of what services my family and I could access.

Some would call that foolish, others denial, but I have learned what it is like to be helpless, inarticulate about how my values and sense of purpose could inform the manner of my care, or of my death. My overwhelming desire to continue ageing in place had overridden my imperative to plan for the unexpected or for a gradual failing of my ability to function competently without external support.

The CareSearch website offered me the information and guidance I needed to start planning, and the new portal enabled both me and my family to find valuable information about services, look at options for end-of-life care, and start discussions about what matters to me before and after my death.

I have three adult children and each of them have stated their desire to be involved in developing a contingency plan for my future. I now have additional government funded support at home, and my husband and I not only have a more realistic plan of how we can remain living in and enjoying our home, but also what support we can access if we become less capable through failing health.

Loved ones who will support you during your ageing process, family, friends, and some members of your community, will also benefit from being involved, and can be entrusted to share in your plans as well as the sources of your information.

The final pathway to your death may be marked by you focussing on your sense of loss, and that your death will also be a source of loss and grief to many. But it is possible to reflect on the positive things in your life, to re-evaluate your relationships, your achievements, and your positive contributions, as well as appreciate the wondrous beauty and mystery of the cycle of life. 

The CareSearch website at caresearch.com.au will enable you to learn more about death and dying with some wonderful ideas about living fully to the end.

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Judith Leeson AM

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The views and opinions expressed in Palliative Perspectives are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health and Aged Care.