Introduction

My thanks to Rachel for writing about her experience of Advance Care Planning. Rachel attended the Advance Care Planning Conference held in May this year and was inspired to take action following the event. It was my pleasure to work with Rachel and explore what was needed for own Advance Care Planning and to create a plan right for this stage of her life.

Rachel’s Advance Care Planning is a great example of a healthcare professional role modelling the steps we should all be taking in planning for our future.

Clare: Hi Rachel, thank you for writing this blog, can we start with you introducing yourself personally and personally?

Rachel: I am a senior staff nurse who has worked in Critical Care at the NNUH, (Norfolk & Norwich University Hospital), for the last 25 years. Throughout my career I have, and continue to be, passionate about delivering a high standard of personalised care to patients and their families.

I am also a 48-year-old mother of two teenage children. My daughter is aspiring to study Veterinary medicine and my son: agricultural engineering. I live with my partner Andrew, a Senior Paramedic by profession and the father of my children. All of us of are physically fit and well. We are very aware of how lucky we are to have good health and try never to take this for granted, but we also know that this could change at any given moment.

Clare: What made you decide to do your Advance Care Planning?

Rachel: The last year has been a very difficult time. I lost my beloved father unexpectedly after a very short illness. My dad was the primary carer for my mum who was diagnosed with Alzheimer’s disease some 10 years ago. On dad's passing, mum was placed into a care facility. Myself, sister and brother visit regularly to take mum out and assist with personal care as staff struggle with her increasingly challenging behaviour. Me and my siblings witness mums' distress, frustration and anger at the situation she is in, her character has changed beyond recognition and I genuinely believe this is not a life she would have wanted for herself. Neither my mum nor dad had ever talked about plans or wishes for the future before or after the Alzheimer's diagnosis.

At work I see advances in medicine that result in an increased life expectancy - treatments and surgeries that can extend life by weeks, months or even years. These treatment decisions are made collaboratively between patient and doctor and, hopefully, with informed consent; people can then go on to make the decision which is right for them. I know sometimes that these decisions wouldn’t be right for me. Therefore, if there was a time when my mental capacity was lost, i.e., late-stage dementia or catastrophic brain injury etc, I wanted to ensure that my wishes were known and honoured as to what I would and wouldn’t want in regards to treatment. I did not want my family to be responsible for any such decision making.

To summarise, we do not have complete control of when or how we die unless we choose to travel and opt for euthanasia. I wanted it known that I would choose quality of life over quantity and, through my Advance Care Plan, have been able to write down what this means to me.

Clare: Thank you for sharing such a personal story and one which I guess resonates with many people. How do you feel now, having completed your Advance Care Planning?

Rachel: I feel the whole process has been liberating, empowering and, interestingly, has removed many of the fears of dying. I feel I have done all that I can to help my family cope emotionally and practically when I die. My unwavering desire to help my children and loved ones when I am alive can now extend to times where I may not have capacity, am in the dying phase and ultimately, when I pass. I hope that this will help them in their bereavement journey so they can remain fabulously strong human beings.

Clare: Did you learn or consider something new through doing your Advance Care Planning with Speak for Me?

Rachel: I learnt how easy and inexpensive it was to complete both an LPA[i], ADRT[ii] and an Advance Care Plan. The last stage to consolidating my advance care plan and ADRT was to discuss it with family and friends. Through this process I learnt so much about their thoughts and fears. I hope through these talks, at least one of them will prioritise the time to plan for their, AND their family's future.

Clare: What would you like to say to other people who may be considering doing their own Advance Care Planning?

Rachel: In my opinion, there is absolutely no reason not to complete an Advance Care Plan. Fear comes from the unknown and the unvisited, find the strength to imagine the inevitable. You may not see the immediate need when you are well, but as we all know things can change in the blink of an eye. Me and my partner see this every day - vulnerable people without capacity are having decisions made for them by well-meaning healthcare professionals because there are no wishes expressed by the patient or their family on how far treatments should be escalated. You have choices: explore them.

Clare: What key messages would you like to share?

Rachel: Don't just think of yourself. Think of those close to you and the impact that not planning ahead can have on them. Making life changing decisions on behalf of someone you love so dearly, who hasn't formally expressed their wishes is excruciating. Discussing my mother's ReSPECT[i] form and making the decision, alongside healthcare professionals, for her only to receive home based care was harder than I had ever imagined. Remember, this process only comes into play if you lose capacity. Ask yourself the question, what constitutes quality of life? In what situation would you want life sustaining treatments to be withdrawn? If you work through this process and decide that you would like clear boundaries and limitations of care in specific situations, then make that known in your Advance Care plan.

To find out more about the Advance Care Planning service I offer contact me. You can also access the blog Advance Care Planning service for further information.

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