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What to say when someone is dying; tips from a master in her field

Palliative care nurse practitioner Nikki Johnston shared insights on The Good Life podcast.

Having supported thousands of people as they were dying, Nikki Johnston has learned the art of encouraging honest conversations at what is often a difficult and emotional time. The key, she says, is not trying to lead conversations. It is much safer to ask questions that enable the person who is dying to take the lead.

The palliative care nurse practitioner from Clare Holland House in Canberra might ask “When you think of your future, is there anything you’re scared or frightened about?” or “When you think about things past or present, what’s on your mind?”

She never knows how people will respond.

“People will say things like, ‘I know I’m dying, but that’s not worrying me. Who is going to look after my dog?’”

Speaking to Federal Labor MP Andrew Leigh for his podcast series, The Good Life, Ms Johnston says she was scared and nervous about having these conversations at the beginning of her 18-year career, but good mentors taught her this approach avoided delving into territory that made patients feel unsafe.

In keeping with that advice, she says she would never tell someone they were dying before she had formed a good relationship.

“I’d let them tell me.”

Ms Johnston has seen instances when attempts at conversation have caused damage, particularly when people push their ideas or agenda upon people who are dying who they don’t know well.

“You can easily say things that aren’t appropriate and sometimes people don’t realise they’re doing it. We’ve all got our own beliefs and ethics ourselves, and that’s part of what makes us up, but if we decide to put that on someone else and it’s not the right time it can be harmful.”

“You can easily say things that aren’t appropriate and sometimes people don’t realise they’re doing it.”

Her advice is to act normally. There is no need to lower your voice or be sad all the time. Most importantly, particularly if a young person is dying, “be there”.

“That is one of the hardest things to do. It is much easier to run away.”

She says she is amazed by young people who are dying, as they are so strong and have taught her a great deal about courage. There is huge value in just spending time with them, letting them laugh and allowing them too, to be their normal selves.

“It might sound funny, but I use humour quite a lot, and people will laugh and tell me funny stories. And that is quite a lovely thing to do when someone is dying.”

Ms Johnston says she gains much from her work, largely from the honest and intimate conversations she has with patients which enable her to “stay whole”. But she is mindful to take care of her own wellbeing to ensure she remains productive and professional.

Early on in her career, Ms Johnston realised it wasn’t a good idea for her to go to funerals. She did initially, but ended up sobbing more than her patients’ relatives. She realised it was an expression of her cumulative grief and so decided to politely decline invitations.

“That’s one of the boundaries I’ve chosen to put down for me – to look after myself.

“I couldn’t keep doing it… I sometimes have six deaths in a week and I’ve been doing this for 18 years now. That’s a lot of people.”

As the mother of six children, and the grandmother of one, she has always found it difficult to work with children and young mothers. She was rocked by the death of a nine-month-old boy who had congenital abnormalities, finding it necessary to stop and ‘put on some armour’ to protect herself emotionally so she could function professionally. It helped to learn that it was important for the family to take the baby home after he had died.

“That kind of saved me because I had a job to do and I could make that happen,” she says.

“I could be effective there and I did make that happen so I felt okay about helping in whatever way I could, even though you’re thinking this is not enough.”

She was also deeply affected by working with a couple who were both aged 100 and had been married for 79 years.

“And that was sad. I cried with that one. They were still in love.”

Ms Johnston says people tend to die as they have lived. Some people will want to fight to the end and will want to try everything, which she respects.

However many others reach a stage where the burden of treatment is greater than what they are gaining from it. Rather than longevity, they want quality of life, which is not the same as giving up.

“I’ve met a lot of brave people. Even if they’re choosing not to have treatment any more, I still think they’re brave.”

A large part of her work is having conversations with patients and their families, letting people have their say and listening, because people’s needs are so different. Sometimes, personal wishes are confronting from a professional perspective, as was the case with a patient who didn’t want to take morphine to relieve her breathlessness. Ms Johnston says she organised for the patient to be sitting with an open window and people around her and she died without having morphine.

“To me that’s a good death because she remained in control and her wishes were respected.

“Even though I might have felt uncomfortable with the amount of breathlessness she had, she didn’t and this is the way she wanted to do it. We can’t help but bring ourselves along when we’re looking after these people but we do have to listen and respect.”

Ms Johnston says deaths can be very traumatic patients are so focussed on treatment that they’re distracted from discussing what is happening to them. She has sad recollections of a patient surrounded by eight machines, receiving active treatment, with no recognition that they were dying.

Traumatic deaths have the potential have a long term impact on the patient’s family.

“What they see is very important in terms of how their life is going to be after that person dies.”

Ms Johnston says caring for family is a core part of palliative care, with benefits that resonate for years within the broader community.

“If people die badly and families aren’t well supported then the community really has a heavy load of grief, and complicated grief really can just go through a whole community.

“So we really need to get it right at the time. It’s not just the one person; it’s the whole family and whatever whole family means – it could be the dog or the cat or aunts or uncles. Family to us is whoever is important to them.”

Experiences over her career have made Ms Johnston realise that health is everything and never to be taken for granted. She has never heard anyone talk about money on their death bed, whether it be spending too much or not saving enough.

“People talk about relationships and experiences, very much so – they talk about living.”

She says living is what her work, and palliative care, is all about.

“It’s about living as well as you can.”


Comments

  • Great article. Thanks Nikki for sharing your passion for palliative care and the people you cared for. I love the comment that was made “To me that’s a good death because she remained in control and her wishes were respected.". The only way we can know what someone wants is to ask them. Let's keep the conversations going. Keep up the great work Nikki. Thanks Heather Wiseman for another well captured discussion

    - Sharon Gibbens
  • Great article indeed .Thank you Nikki for sharing ! For me also a great reminder to acknowledge it's their journey "I let them tell me"and how important it is to know yourself, your beliefs and values and to keep them to yourself when caring for people who are dying.

    - Corine
  • I have had the honour of being present in a number of deaths. I read this with great interest. What a wonderful career you have had. The effect that you have had on so many lives and deaths. Some people struggle with there own death while others seem really serene and so ready to go. I feel blessed to have been a witness to these events. God bless you always Sharon

    - Julia Raven
  • A lovely article Nikki! So much of what you have said I have heard and respected over the past 15 years in my role as a palliative care volunteer in Canberra. I can't but think that learning the art of listening is so essential to the dying patient and the family. Listening with your heart and being attentive to their needs..... I value what you have taught me over the years Nikki and I always try to be mindful of what REALLY matters........ MA

    - Mary-Anne Kitchen
  • A very good and informative article I think it's important to understand that death should be tailored to the persons needs and their family it is often one of the last things that you can do for the person and their family.

    - Maida Mitchell
  • Thank you so much for sharing your experiences. As a nurse working in research on bereaved relatives what you say I can honestly agree with. What happens at the time leading up to the death and the moment itself will impact on the relatives either in a positive or negative way. My twin sister died in a palliative care unit in a hospital a year ago and I was distressed with many things that happened during that time and they still haunt me today. May more people like you work in this important part of health care. Monica

    - monica spinaze
  • I wish I had seen this when my beautiful partner Della was dying, it would have helped both of us, we were so alone.

    - Lyn McClure
  • Good information, touching caring expressed. Still, I'll share that my experience as a social worker in hospice: One of the most blessed things I did was go to "viewings" with families, and attend the funeral. It's one more extension of my caring for the family and also saying good-bye and remembering my experience w/the patient and the family. I also helped the family choose poems, songs, participation in funerals. We had a form at the guest book for guests to write a note of memories--they family had those as a memory--and we used them in the service itself.

    - Karen J. Clayton
  • Excellent article as a fellow palliative care nurse I can relate to this a lot. Its so important to allow our pt the death they want and to support the family through this journey.

    - Cath Willner
  • Nikki you are truly amazing it is an honour and pleasure to work with you help and assist and educate so many people and families that we have worked with carry you with them always. x

    - Deb Crome
  • A beautiful article, thank you

    - Sophia
  • Sending you Love Lyn McClure Great article Heather and Nikki, I feel this will go a long way and help many many people, just Beautiful! Xx

    - Jody
  • Thank you Niki. I worked in palliative care and burn't out after a few years. I wish I had read your article sooner. I became to emotionally involved. Should have stood back. I also made the mistake of going to funerals thinking this was required. Your words were brilliant and so helpful.

    - Tricia Ellis
  • This is a lovely article. Thank you for sharing, much appreciated as my family face my mother's illness.

    - Jenelle
  • This brought a smile to my face. Nikki was my Palliative Care Nurse throughout radiation therapy. She helped me more with just my physical pain. I could talk to her and she treated me like a person not somebody who was sick. She always put a smile on my face. Anybody unsure of how to be around a sick and/or dying person should definitely be like Nikki. I'm so glad to see she's still working in the field.

    - Candice
  • I have a close relative with a terminal illness. I struggle not be the positive one who won't give up. Need to listen more. Timely information indeed.

    - Andrea Twell
  • Great to see your compassion for others and the love for what you do shine throughout this article.

    - Michael Barbato
  • Thank you Nikki for sharing and Heather for taking the time to write this; just helped me out immensely with a friend in a real world application.

    - Michael

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