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Elizabeth Pepper 19 July 2022

When my husband was dying, Sarah Malik was a life-changer for me

…and, in the same way, she was a death-saver for my husband.
Guest post

Today’s guest post comes from Elizabeth Pepper who was supported by our specialist information and support nurse Sarah Malik for the advanced care planning that ensured her husband had a good death.

Elizabeth and her late husband Alan

I cried with joy when I found out Sarah was a finalist for the Patient’s Choice Award at the Royal College of Nursing Awards 2022 after I nominated her and she won.

In 2019, my husband Alan was in his eighties and in poor health. He told me he wanted to write a living will, also known as an advance decision to refuse treatment, to say he wouldn’t want to be given CPR or other treatments to keep him alive if he became seriously ill and unable to say what he did or didn’t want.

Alan had very firm ideas about what he wanted for his own end of life (his death,) and recording his wishes like this was very important to him, he said.

When he was no longer able to communicate his choices himself, he didn’t want a doctor to ignore them.

I was devastated. I didn’t want to accept that he was going to die, and I asked him not to do it. I feared that in accepting his living will, he would feel like I was giving up on him.

Not knowing where to turn, I Googled and found the number for Compassion in Dying’s Information Line, which is where I first encountered Sarah’s incredible work.

It took me days before I dare phone, and then I just blubbed down the phone, and blew my nose a lot, as I tried to explain my difficulties and my husband’s questions.

But Sarah was incredible. Over several phone calls, she gently helped us to reach an understanding and helped me to understand that having a living will wasn’t giving up on my husband, but was actually supporting and empowering him when he needed me the most.

From her nursing background, she was able to explain what happens when someone dies, what happens in hospitals at the end of life, and how to speak to doctors about what your loved one wants.

We were able to phone her again and again with all of our questions and anxieties and she was always there to offer kindness, compassion and support.

As well as the living will, Sarah helped us draw up a Lasting Power of Attorney (LPA) for Health and Welfare, which gave me the power to make medical decisions on my husband’s behalf when he could no longer make them for himself. Because his living will detailed his wishes, I felt confident that I could make sure they were followed and vitally, when those sad days actually came, I felt ‘authorised’ and informed; I knew what Alan wanted.

When Alan’s health suddenly declined in 2020 just as Alan had feared, he did end up under the care of a different doctor, who didn’t really know him and, who did attempt to ignore his wishes. He tried to admit Alan to hospital, attempting to force treatment on him that he didn’t want.

But thanks to the living will and LPA that Sarah helped me with, I was able to advocate for him and ensure his wishes were followed.

The experience has inevitably made me think about my own end-of-life choices, and I have once again turned to Sarah for help, knowing that she will offer the very best support and the utmost patience and empathy.

I am now an incessant advocate of living wills, so Sarah’s guidance and support has changed not just my life, but all those to whom I have passed on her guidance as well.

But, Sarah is unique and is doing something which is itself both unique and exceptional and which Alan and I couldn’t find anywhere else. She is saving deaths.

Lots of wonderful nurses are alongside their patients but this is more. It’s such a vital but overlooked aspect of nursing and Sarah both succeeds and excels because she is such a remarkable, intelligent, compassionate and capable nurse, I am so thankful she has answered her calling to help people at the end of their lives.

Sarah really did save my husband’s death. She is so deserving of this award and I urge you to vote for her.

If you need to talk to Sarah to get help putting your wishes down in writing or for any other questions you can contact our nurse-led information line on 0800 999 2434.

Voting closes at midnight on Friday 29th July for the Royal College of Nursing Patient’s Choice Award. You can vote on the RCN website.

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