Recently, there has been an online discussion somewhere on Facebook (I can’t find it to refer to it) about what needs to go into what in Australia, we call “Advance Care Directives” (updated from Advanced since being indirectly corrected via twitter). I have had a legal will, and both a legal Guardian and Power of Attorney appointed since I was 18. But then, I was, and still am, a bit of what some people refer to as ‘a death groupie’, and not at all afraid to die, or to talk about dying. I even had my own ‘cemetery plot’ once, which I managed to lose.
Even this week, at an event I attended at the University of South Australia, the topic of death came up. Some people there were aghast at the thought of even talking about death, and the conversation was interesting, and insightful It seems, many of us are ready to plan for living, but still very few want to actively plan for death. I’ll be 61 years sol this year, and have lived an interesting life with a lot of ups and downs, but I am happy with who I am, and ok about dying. In many ways, being told you or someone you love has a terminal illness is such a gift, as it does force you to think about your own death, or theirs.
Usually, facing death due to a terminal diagnosis is a very difficult time, but it can also be a great gift as it can inspire us to tell those we love, just how much we love them. It can also motivate us to resolve any difficult relationships we may have, or give us the strength to walk away from them with peace in our hearts, if we know they are not able to be resolved. It helped me stop yearning for what I know cannot be resolved via a healthy two-way discussion, or even a letter. Whilst that is still really sad, it is my reality, and definitely one that I am better to accept than fight against any longer.
The one certainty in life, is death.
Familes may not support you. For many of us, it is more often our friends who become our chosen family who do that.
Friends may walk away; they have come into our lives for a reason, a season, and occasionally, some stay for a lifetime.
Memories may fade; feelings usually won’t.
But we are ALL going to die. Fact.
Therefore, we might as well talk about it, and plan for what we want in the event of a medical crisis, so that those who are supporting us and love us, do not have the added stress of having to make decisions for us, based on what they might think we would want. I have seen so many families broken up by the stress if this, as some members think their father or mother or child should be kept alive; others may feel the opposite. I do however have friends and family, who would prefer not to talk about their own death, so, it is, just like dementia care, very personal, and needs to be individualised.
So let’s call it Person Centred Planning for Death! I even advocate that schools should talk about it to our children, at around the same time as they teach them how to vote for an election.
They teach sex education, some teach religion, so why not death and dying education. It is perhaps, the ONLY certainty in life. parents should talk about it with their children, including young, and adult children, if they didn’t talk about it when their children were young.
Tell your friends too, in case your family or guardians have different opinions about “your best interests”.
Put it IN WRITING; making it very clear what you do and do not want in terms of life-sustaining interventions. For me, forced fluids is an intervention, even if it is someone feeding you fluid through a baby style cup or with a spoon.
Some of my online friends have asked me to specifically list some of the things I have in my Advance Care Directives (legal end of life wishes):
- Do not resuscitate (DNR) under any circumstances
- Do not insert a gastric feeding tube (PEG) – unless it is for early management of Motor Neurone Disease (MND)
- If diagnosed with MND (again – yes, I do have proof I was once diagnosed with it, and given the medication for it from with I have a recorded anaphylactic reaction to the drug; I had also been booked in for the insertion of a PEG at the old Royal Adelaide Hospital), then please remove the PEG, if I am at the end stage of dying from MND
- Do not keep me alive with a Resuscitator (breathing machine) if my quality of life is not as it is today
- Do not provide Intravenous hydration if I can no longer drink fluids by mouth
- Do not give me antibiotics (oral or intravenous) for pneumonia or any other infection, if late stage dying or late stage dementia (ONLY my husband and sons are who can determine if I am late stage enough for the with-holding of treatment, not a medical doctor or nurse). If they all die before me, I have two nursing friends who will become my legal guardians.
- If I can no longer eat anything other than ‘slop’, do not feed me; let me die
- If I can no longer feed or drink without assistance, do not assist. Not even once; please let me die
- If I am diagnosed with cancer, and am unable to make my own decision about treatment, do not allow any medical treatment or intervention other than pain relief
- If I do need to move into assisted living, Group Homes Australia (any one of their homes in Sydney – or Adelaide, if they ever decide to expand their operations to my state) is my choice
- Finally, if any health care professionals go against my legally recorded wishes, my guardians have been instructed to take them to court, using if necessary, all of my funds to pay for it. The reason for this last point, is that when I was admitted into hospital 18 moths ago for a suspected meningococcal disease, I was told they would ignore my ACD’s, as I was too young! So, even though the health care sector advocates we all plan for end of life, some will then will thnk they have the right to ignore them, if they so choose!!!! Go figure.