Emotional challenges of Advance Care Planning for the poorly person, their family and friends

I've spent considerable time recently sitting by my terminally ill friend’s bed in a hospice. Amidst the sadness, I have found it to be a professional learning experience. I've realised how much I take for granted the knowledge I possess about a complex and confusing healthcare system, compared to those receiving care and support who are not familiar with the system and processes.

While sitting in ward rounds, I observed my dear friend struggling to make sense of the overwhelming and powerful information given to him, at times feeling frustrated toward professionals’ positive attitudes regarding his situation. Reflecting on my own practice over the years, I wonder how many times I've been that professional, convinced I was explaining information in a digestible manner and remaining positive despite the difficult information being delivered.

We professionals hold so much knowledge of the system, despite finding it confusing ourselves, and our specialism that it can be difficult not to let go of higher-level language and jargon not fully understood by an unwell person and their family. If a plumber explained to me the intricacies of my boiler, I would likely forget the information quickly. When it comes to making decisions about treatment plans that significantly affect one's life and well-being, the anxiety experienced would surely lead to more rapid forgetting and confusion.

Last week, an Advance Care Plan (ACP) appeared in my friend's room. It hasn’t been moved or touched; it just sits there. When I asked if the concept had been discussed with him, he said it had not. I keep wondering if I should help him with this, but I am not his nurse; I am his friend. I don’t know if it is my place to do so. I don’t want to ask the staff if they intend to pursue this. We’ve all experienced a healthcare professional who is a friend or family member trying to involve themselves in their loved ones' care because they want the best for them. I don’t want to be that person. Being just a friend to a poorly person feels disempowering. The professional in me wants to take the reins and try to fix things, yet, I hesitate to broach the subject in case it is too upsetting for him. I’ve known many family members to feel this way.

The ACP is an incredibly important document when used correctly. It gives people some control over their future, ensures that wishes are granted, and allows for directed communication with services. Yet, the professionals do not appear to have pursued this. As a friend and not a nurse, I realise how difficult it can be to open these conversations. For the most part, I now realise that such conversations are best led by a professional. Simply introducing a document or process when someone is unwell is not always helpful. Loved ones often fear upsetting the patient, and it might be too overwhelming for them to consider organising plans for a more supported and comfortable end of life.

For people living with dementia, the ACP should be introduced intuitively and ideally, early. For many unfamiliar with the healthcare system, its processes and concepts, the professional is usually best to lead this conversation. The valuable document in my friend's room simply looks like a colourful booklet. When completed correctly and with the right people, this document is powerful and provides crucial information and guidance for the person at the most important time in their life. Empátia Specialist Dementia Coaching