Jean Kittson is dying to talk
Performer, entertainer and author, Jean Kittson, is patron of Palliative Care Nurses Australia. Below, Ms Kittson answers questions from the Dying to Talk Discussion Starter, launched yesterday by Health Minister Sussan Ley.
For support in discussing end-of-life wishes with your loved ones, download it from www.dyingtotalk.org.au
If you had a condition that you could not recover from, what would be important to you, towards the end of your life?
Firstly, that my will was stitched up as tight as possible so that no one could take anything from my family.
Secondly, that I was not in any pain or even discomfort. Discomfort is a term many doctors like to use, as in “You may experience some slight discomfort”, while they thrust a horse needle into your thigh. Never buy shoes from a doctor.
Thirdly, if I was in pain, or even discomfort, I would want control of my pain management. I should not have to argue with anyone about how much I should take. This is not an endorsement of euthanasia. It is the insistence of someone who is an adult and who does not like pain.
I have had pethidine in the past and it really is very effective. I have not then rushed out into the street looking for a peth’ dealer.
Pethidine, morphine, whatever. If we are talking about end of life, there will not be enough time to become an addict, and addiction is the very least of the problems available. If pain relief causes constipation and the doctors then need a jackhammer for my stools – so be it. My pain, my choice.
And if I am not suffering then my loved ones will also not suffer. Grief is acceptable, grief is part of life, but avoidable and unnecessary suffering makes no sense to me.
Finally, given the fact that I will not be the first person to die of whatever it is that is killing me, I would like a palliative care nurse to explain to my loved ones, and to me, what the journey will look like.
Actually, let’s call it dying. I am no longer keen on the word journey. Many people I know who have terminal illnesses loathe other people referring to their dying as a journey. Journeys have voluntary destinations. You do not set off on a train journey if you know that the train will plunge into a canyon. End of life is dying. Call it.
That is why I would like a palliative care nurse to be with me and my family to explain clearly and honestly what is going to happen.
Are there any pets that you would like to see or be with you, if this is possible?
I have no pets at the moment, unless you count my daughters’ boyfriends. I am very fond of them, but probably wouldn’t want to put them through any more grief. They can support my daughters outside the room.
Having said that, I would like loved ones to be able to lie down with me on the bed and chat or read out loud or eat chocolate and watch TV, or whatever is going on, so I would like my last bed to be a big bed, with many pillows. Not a single bed.
Would you prefer a quiet environment or do you prefer activity and chatter around you?
I would prefer my home environment, which has both quiet times and noisy times.
The quiet times are often my husband and I watching House with a cup of tea and block of chocolate. We like House. They are always talking about dying. In fact that’s all they do on House. They talk about dying, about preventing dying, or about being unable to prevent dying. What is especially satisfactory about House is that not only are there always four or five doctors to each patient, who has their undivided attention and unlimited time and state-of-the-art resources, but only in about one episode out of 26 does someone actually die. And in that episode, they tell the patient what is going on. “I’m sorry. It’s incurable.” “How long have I got, doc?” “Oh, about 15 minutes.”
And I would also like to know and feel that other people’s lives are going on as usual. Gossip, rushing about, arguments about who has the hair straightener, family jokes, tales of love and hope and today at the office and last night’s party, and the party planned tomorrow. I don’t want everything to stop, out of respect, just because I am about to stop altogether.
Would you like music to be playing and if so, what style or what music?
I imagine I would like familiar songs with uplifting lyrics from the ’60s and ’70s, some of my favourite modern songs from my daughters’ playlist, and some evocative classical music. Anything but rainforest music or meditation music or any of the music that is played while you are getting a facial or being waxed. And please don’t play the same thing over and over again, even if from all outside evidence I have lost my reason.
If possible would it be important to you to have time outside?
Good point, and yes, absolutely. I would be very happy to be wheeled under a tree by the sea. If that is impractical, then in the sun by a window. Preferably with a view of the sea.
Would you prefer to be surrounded by lots of family and friends, or would you prefer one or two closest people to be with you?
I may be dying but I am still living, so I imagine I would like to do the same things as I do throughout life. Conditions apply, of course. A coma is not the best venue for a party. If my pain is managed and my hearing aids are working, then I would think that lots of people having a few wines and a few laughs would be pleasant, sometimes. At other times, just one on one, quietly being, holding hands.
Are there any cultural or religious practices you would like to observe?
Good question. Not just at the moment, but I will bear in mind the last words of the writer Voltaire when he was on his death bed. A priest came to him and said, “Do you renounce the Devil and all his works?” Voltaire responded, “This is no time to be making new enemies.”
Then there was W C Fields, whose friends were said to be surprised to see him on his deathbed, reading a Bible. “What are you doing?” “Looking for loopholes.”
My father, who was raised a Catholic, but who was excommunicated when he married my non-believing mother, has recently let his wishes be known. He wants a full Catholic mass and to be buried in consecrated grounds. I am hoping that the Catholic Church has become more compassionate and less exclusive in the years since their marriage
My non-believing mother wants to be cremated and her ashes scattered out to sea, accompanied by a lone piper, who presumably then has to swim back to shore. Interestingly, she isn’t the slightest bit Scottish. She just likes a piper. Luckily, she doesn’t have a thing for brass bands.
I shall probably observe my usual cultural practice of having as much fun as possible. I will make sure that I have a whoopee cushion on the visitors’ chair. Especially if a hopeful priest drops by.
Is there anyone particular you would like to see or talk to?
A concierge. In the newspapers recently was a story about the success a hospital is having after changing its working mindset from whatever it was – medium security prison perhaps – to hospitality. This can only be an excellent thing for families and patients.
We need someone warm and friendly and obliging who makes sure we have everything we need to have a comfortable stay. Including feather pillows and masseurs.
Is there anything else you can think of that you would like?
If you are dying you can’t be expected to plan everything.
When the late, great Bob Hope turned 100, his wife asked where he wanted to be buried he said: “Surprise me”.
Also, I would like people to read to me – novels, poetry, short stories, news items – just nothing by Dan Brown, please.
Massage would also be lovely. Just hands and feet would be fine.
What is on your bucket list of things you would like to do or achieve before you die?
Too many things to write down, some nostalgic, some new. If I am bedridden, some online auction bidding would be highly acceptable. Especially if I am medicated.
How did you feel during the process of completing this form? Was there anything about the process that interested or surprised you?
I thought the form had interesting details, or talking points that I think will help my family in the event that I lose the power of speech or reason.
I find that not knowing what the dying person wants and likes can further upset those around them.
A list like this could be stuck above the bed with a chart indicating what music was played yesterday, or where we were up to with Stephen Fry’s audiobook reading of the Harry Potter story.
- Frail elderly put new pressure on prisons to provide palliative care
- One third of elderly patients receive futile treatment before they die
- Symbolic works created with ink-filled syringe capture life and offer therapy
- The most intimate thing I’ve done in my life: Kylie’s story
- Vicarious trauma: a young nurse shares her experience