The importance of advance care planning in the care of people who have frailty: A personal perspective

Cat Sullivan is the Senior Clinical Practice & QI Manager at Hospice UK, with over three decades of nursing experience. For the first national day dedicated to Advance Care Planning (ACP), she shares her experience and key areas to consider in ACP. She tweets @CNSCathriona.

As a palliative care nurse with over three decades of nursing experience and current involvement in hospice care focused on frailty, I have witnessed first hand the vital role advance care planning (ACP) plays in ensuring individuals receive the care they want, particularly as they near the end of life.

Through my work at Hospice UK, the national charity for hospice and end of life care, I see the importance of ACP and how much we need to do to ensure people are aware of what it is and the clarity and peace of mind it can give them. Through our Dying Matters campaign, we want to create an open culture, so people feel more comfortable talking about death, dying and grief. Part of this includes talking about the end of life and what people can do to plan for it.

Here, I want to share a more personal side of why I believe so deeply in the power and necessity of thoughtful advance care planning.

My mum, now in her late eighties, has lived a vibrant life – a fair chunk of her earlier years as a nurse - and continues to live independently, but has developed hearing and sight difficulties. As she has become more frail, conversations about her future care have become more urgent and important. My family all know what she wants and does not want, but what if someone who does not know her comes upon her after a fall or a sudden ‘turn’? That is a big worry. 

All my years of nursing experience didn’t fully prepare me for putting ACP plans into place with my mum. She has always guided me and even now, she teaches me the nuances of supporting someone in this context. It is a difficult step for many to take, to put their trust in a system that is resource poor when they are at their most helpless. Through personal and professional experiences, I have gathered insights into what makes ACP effective, and will share some key considerations that might help others in similar situations.

Knowing the person

At the heart of ACP is the person; their life, choices, sense of purpose and dignity.  

Initially, I thought ACP was very specialist, but I've come to realise that anyone within the care team or family can do it. It's fundamentally about listening, understanding, and sharing the individual's values and prioritising their overall well-being and comfort.

The power of a chat

Communication must be open, continuous, and involve all key parties. The person about whom the ACP is concerned, the family, and healthcare providers. These conversations can be messy and sometimes we need to ask for help from someone more experienced.

Conversations should happen with compassion and clarity to ensure everyone understands the person’s wishes. With practice and skill, we can learn how to check with the person and their loved ones about their readiness. 

Because of my mum's visual impairment, making sure her ACP document is current and accessible falls to one of us, her family. During the pandemic, she finally expressed curiosity and a year later, reviewed it with me and was surprised by the level of detail she had initially provided.

Documentation is key

It’s not enough to just talk about preferences; to help a person achieve a good death, these need to be clearly documented and shareable across places of care. With so many medical records databases, how can we make sure that person’s ACP documents are in the right place at the right time?  

For my mum and I, we want to keep it simple and sometimes that means avoiding complex and legalistic conversations. One of my go-to phrases as a palliative care nurse was ’let’s hope for the best and plan for the worst’. Preparing ACP documentation should ideally help people feel more in control, and certainly should not feel that hope is being taken away. 

ACP can intersect with legal issues, such as power of attorney or DNAR orders, further underlining why thorough documentation of someone's preferences is necessary. Understanding and navigating these areas is essential so that we can align medical care with the person's rights and personal wishes.

Training and support for healthcare providers and promoting awareness

Anyone working in healthcare needs appropriate training to support ACP sensitively and effectively. This includes understanding how to approach difficult conversations and manage the emotional weight they can carry. We need to keep in mind that it’s not just medical staff who need to be aware of ACP.

Finally, both the public and professionals need to be aware of the importance of ACP so we can improve the quality of end-of-life care and make these discussions more common and accepted.

ACP is more than a professional protocol, it’s a deeply personal commitment to respecting individual dignity and preferences at one of the most vulnerable times.