Person Centred Planning for Death

Image source: Kate Swaffer

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.

For now, I will get on with living as positively as I possibly can, until I die!

18 thoughts on “Person Centred Planning for Death

    • My pleasure Bobby… glad it helped. It is quite trick, and my own took me a few drafts and discussions with my doctors to get it right. Plus a discussion as a patient, being told they would be ignored, inspired me to add the final “please sue anyone who over-rides them”.

      Like

  1. Dear Kate,

    Thanks for your sharing and we are also discussing about the “Advance care planning” of the persons with dementia who should be legally protected. The label of “mentally incapability” was generally made once with a diagnosis of dementia which was full of stigma. It will be vital to clarify and fight for the rights of persons with dementia. Ignorance of the voice of persons with dementia and manipulated one’s life are really intolerable!!!! Please keep up and support your work as always ^^

    Best Regards,

    Kenny, Chui Chi Man (HK)

    Like

  2. Kate
    Thank you 🙏 so much for this I have covered most of what you said but not all in my Advanced Directive but I am going to rethink and change the way I have said it and get it updated
    As the law and hospital processes change

    I too was recently (October 2018 ) was admitted to hospital with a severe pneumonia
    and I was told that it was only a guide not law and the hospital I was in allows the doctors to over ride my wishes and have final say
    Keep well my friend
    Agnes
    Get Outlook for iOS
    ________________________________

    Like

    • Dear Agnes, I am sorry you were told it is ‘only a guide’… Frankly, how dare medical professionals over-ride our wishes, especially if we have gone to the troube of making them legal, as we have. It keeps the public perceptions about health care professionals having all the power, and not listening to patients alive, that is for sure. I’m glad this list has given you ways to strengthen yours too. Let me know if I’ve missd anything! Keep well too dear friend, Love always, Kate xx

      Like

  3. Well another example of your mind reading power old boiler I’m just admitting Dad into hospital after a rough couple of days with chemo side effects. So great advice for having Advanced Care Derective all in place so everyone is on the same page. Keep spreading the good advice much love old boiler Ness x

    Liked by 1 person

  4. Also it’s weird how we worry about the little things such as my thing with the dogs.

    When we first started going away that was at the forefront of my mind and the biggest worry – dogs and horses stay with you no matter what. They weren’t both 18yrs at the time so I worried they would be legally classed as too young and have decisions about the house, their care and the dogs / horses made by someone else. If you should need to re-home them for any reason you contact this person at that place and give them the amount allocated to cover costs and make sure they see them right.

    I always feel better leaving for the weekend knowing if we don’t get home they’re good and taken care of with plenty of cash in the bank to pay for dogs and horses and nobody will be left short or worrying and I can relax.

    A favourite little “thing” was after a lady that lived in the care home I managed died. She had a beautiful nativity scene which had been passed through the family and whilst clearing out her bedroom I found it with a note stuck to the front “When I pop my clogs please give this to my niece she’s been eyeing this one up since she were little”

    Like

  5. The humour is what helps make it an easier subject to broach when people are awkward and uneasy. I’ve found from experience that once you find a way in and get that initial conversation going it helps to relax and get people feeling much less anxious about bringing it up again in future. The more lighthearted and humorous the better.

    My 18yr old son’s question asked in all seriousness was “If I die will you be legally allowed to have whatever can’t be donated put inside a Pringle’s tube and blasted into space? That’s what I’d like to do with my left overs. Donate my organs, make a percussion instrument out of whatever bones or cartilage then Vacuum pack the rest inside a Pringles tube and blast into space with the Russian national anthem playing me out”

    Me “I’ll see what we can do and if we can then you got it – Pringles tube and Russian anthem it is 😀 ”

    I personally think funerals should be about the person and include lots of humour and even crass and inappropriate things if it fits. My Dad’s funeral included various stories and his wife asked my Mum to be involved and give some of his finest “moments” of which he had many and we needed to whittle down.

    Seems an odd thing for many to get their head around but the church absolutely roared with laughter at Dad’s funeral. He was hard work and trouble and never did anything the right way up so all his ills and temper tantrums and brushes with the law were remembered respectfully but with fond and really sincere memories.

    He was offered try-outs with premier league football teams but didn’t go because he was hungover, is still even now five years after his death known and referred to by many as “Paddy” due to his ferocious temper and fondness for winning and losing thousands in the bookies.

    Then one day out of character he decided do a good deed and make us all tea whilst Mum was at work. Nearly killed us after chopping, cooking and serving up daffodils he thought were spring onions!

    It’s fair to say he was remembered for being the pranny we knew and loved!

    Like

  6. Reblogged this on Auntysocial and commented:
    Another excellent post from Kate and well worth reading whether you’re young and sprightly or not so young and a bit nearer the finish line.

    It’s a subject many people feel uneasy about and don’t want to entertain the thought but as Kate rightly points out, it’s the one thing that comes to us all and by knowing we’re doing what our loved ones want we have that reassurance and can them the peace of mind we’ll do right by them and as they wish.

    I have already and long since made sure my husband and kids know the drill. Still don’t go away for weekends without making sure the kids know where all the paperwork, insurance policies and contacts are in the event we don’t come home so they have everything they need and plenty of cash left in the bank.

    Daughter still goes “Yeah I know where stuff is and yeah I will make sure the dogs stay with me and you and Dad are put into cardboard boxes and cremated and yes I know where the inappropriate and really crass music and voice files are on your laptop… Go have a good weekend”

    Liked by 1 person

    • Love your kids responses! My youngest used to say to me, whenever I asked him to let me know he’d arrived safely: “you’ll either get a knock on the door or see it on the news if anything goes really wrong!” Gotta love their senses of humour 😹😹😹

      Liked by 1 person

You are very welcome to respectfully join this global conversation.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.