Since my last blog post on this website and today, the first day of 2020, my dad Kenneth died and my brother and sister and I have renovated and sold our family home where I grew up, and where four generations of our family have lived at various times.
I wanted to write and post this blog twelve months ago, but for whatever reason it was too soon; grief sets its own timeline for important matters such as these.
All of my plans for the past year and a half were put on hold from the moment I first had to drop everything and travel to sit by Kenneth’s hospital bedside for several days and nights to protect him from all of the well-meaning health professionals in the hospital system. And I say that with much respect, as I myself was one of these well-meaning health professionals for more than two decades.
I want to use this blog to impress on everyone just how important having an Advanced Care Directive (or Advance Care Plan) is to empower you to be able to achieve the end-of-life that you want.
In addition to the obvious benefit for yourself, an Advance Care Directive can be an incredible support and guide for your loved ones, because the document can assist them greatly during times of enormous stress of having to make decisions about you, if you are unable to do so yourself. If you have never discussed with your loved ones what your wishes are for your end of life, how can they know what you would have decided for yourself had you have been able to do so?
Dad had at first been very reticent to complete his Advanced Care Directive. I could see he was getting more and more frail, and I was worried about how his end-of-life would be without an Advanced Care Directive. I was worried because we live in an era where medical science can do so many different tests and interventions; and an era when it seems increasingly hard for health professionals to first pause and consider whether initiating potentially futile interventions and treatments, just because we have the technology to do so, is really such a good idea. There’s so much talk about ‘patient-centred care’ these days, yet our health system seems to remain very paternalistic about who knows best about what is best for the patient.
Every time I raised the subject on an Advance Care Directive with Dad, he repeatedly replied saying that he trusted us his three kids to make decisions for him. I tried to explain to him that it wasn’t that easy without an Advanced Care Directive and a legally designated medical decision maker.
Eventually I decided to take a different approach with Dad. I completed my own Advance Care Directive and managed to construct an opportunity to sit down with him and explain it to him. I was aware that there was a high possibility that I wanted quite different options for my end-of-life than what Dad would want for his end of life. I explained to him that I wanted him to understand what my choices were so that he would be less upset and anxious that I didn’t want every possible intervention to extend my life at any cost. And I wanted him to understand that I didn’t want my last days alive to be spent in a hospital geared towards prolonging life, but rather I wanted to die in a hospice geared completely to the needs of dying. During this conversation he sat quietly and reflectfully, and didn’t say too much other than to ask a couple of important pertinent clarifying questions.
A few weeks later, Dad agreed to complete his own Advanced Care Directive with assistance from my brother. The primary reason for his change of stance was that Dad realised that I had felt it was important for me to have my own Advanced Care Directive, so perhaps he too might benefit from having one himself, after all, I had worked in the health system for several decades. Turns out not too many months later that Kenneth benefited enormously from documenting his end of life wishes.
During Kenneth’s short stay of only a couple of days in the hospital before he died, I was able to refer numerous nurses and doctors to his Advanced Care Directive, to inform the focus of all his ongoing care needs. Without an Advanced Care Directive it seems almost incredibly difficult these days to prevent the ‘hospital machine’ from kicking in and pushing patients along a trajectory incorporating every test possible. There were multiple times that my brother and sister and I were pressured to consent for Kenneth to have more invasive tests and procedures, but with the benefit of his Advanced Care Directive, we, his family, were able to confidently push back on the ‘hospital machine’ and explain to all of the well-meaning health professionals that Dad wanted the focus of his end-of-life to be on primarily on his quality of life rather than the quantity of life that remained possible. There was no point in agreeing to another invasive test that had little or no chance of extending his life unless it was likely to provide information which would improve the quality of his life. We confidently declined Kenneth having more tests and investigations which were likely to cause him more pain, and when the results of which were not going to change the care plan aligned to his documented wishes for his end-of-life.
Without going into further specific detail, for Kenneth, having completed an Advanced Care Directive became incredibly important for him to realise a peaceful death, and for us, his family to enable this to occur.
If you are looking for assistance to complete your own Advance Care Directive, or to empower someone you love to realise the end-of-life that they want, please get in touch with Dignity Network and speak with one of our experienced consultants who can share their expertise and guide you through the process.
Dignity Network can help with any of the following:
- Answer your questions about Advanced Care Plans
- Help you talk to your family about your wishes for the kind of end-of-life you want
- Document your end-of-life decisions
- Provide you with an electronic copy of your Advanced Care Plan which you can carry in your wallet or purse everywhere you go on a credit card sized USB
- Help you upload your Advanced Care Plan to your MyHealth Record.
Dignity Network can be contacted via the internet DignityNetwork.org.au, via email Hello@Dignitynetwork.org.au or via phone 0435 351 234.
There is no doubt in my mind that Advanced Care Directives are best completed over a pot of freshly brewed tea or coffee, with informed experienced empathetic professionals who wont judge you, but will empower you to document your wishes and discuss them with your loved ones.
Make 2020 a year of empowerment to give yourself the best possible chance of having the end of life you wish for by completing your Advanced Care Directive as one of your top priorities for the new year.