Talking about your wishes to improve the future

‘Advance Care Planning’ (ACP) is an important talking tool that hospices, GPs and other professionals can use to help someone plan quality care towards the end of life. It’s also a tool that anyone can use to express their wishes. Pilgrims specialist nurse, Maria Marley, explains. 

Serious illness and ageing bring challenges that it’s natural to avoid thinking about. At the same time, planning ahead and making your preferences known is a good way to make sure that anyone who provides care for you, whether that’s family or health professionals, tailors that care to your wishes.

I am a specialist nurse at Pilgrims Hospices. Earlier this month, we launched a new pilot workshop in our Thanet hospice inviting people using our services to talk about their future care and wishes. 

Called Advance Care Planning, the workshops give information and the opportunity to discuss experiences or concerns about expressing patients’ preferences and wishes for their future care. Family and friends can be there, too, if the individual wants that. 

I want to share just five of the benefits people have found by coming to these sessions, because these can just as easily be achieved if you decide to use this talking tool yourself or with your GP.

Starting the Big Conversation with ACP can mean:

We support people to take that all-important first step to talk about their needs.

1) Conversations that support individual care

These conversations help the healthcare team involved in the person’s care to know what is important to that person, such as their physical care, values and beliefs. This might also help them to answer the questions people have like, ‘Who will care for my animals?’, ‘Who will support my loved ones?’ or ‘Where is my preferred place to be cared for?’. It also gives people a chance to say what they don’t want to happen. 

2) You can review your wishes over time

ACP should be an ongoing conversation, so you can keep reviewing your wishes if these change. It’s not legally binding, but it helps us know how the person wants to be cared for. It’s been found to be one of the most important ways we can ensure reliable, focused care. 

3) A starting point for talking with family

When someone is ill, there may be conversations that their family know they need to have but are really worried about starting. The person themselves may also find it very hard to express what they are feeling or what they would like. Through ACP, we give people a starting place to talk about their needs and experiences.

4) Expressing wishes formally or informally

The conversation doesn’t have to be formal and isn’t legally binding, although if someone has a terminal diagnosis that may lead to a loss of capacity, then having a formal, legal record – known as an ‘Advance Decision’ – will help their healthcare team to continue to ensure they are enabling that person’s individual wishes and choices should that person lose capacity to express those wishes.  

You don’t need to be ill to express your wishes. I have started these conversations with my own family at home.

Once families talk about their wishes people can feel a huge sense of relief.

5) Inspiration for everyone to talk more openly

So far, the workshops I’m running have proved hugely popular and have been fully subscribed each time. I think this shows the importance of having these big conversations.

Once families talk about their wishes, people can feel a huge sense of relief. Of course, you don’t need to have a terminal diagnosis to express your wishes. I’ve started having these conversations with my own family at home. I find it comforting knowing my wishes will be fulfilled. Whether people come to Pilgrims for support or prefer to talk to their GP, the key is to give people the tools and the confidence to be more open. 

Join us for free ACP sessions during Dying Matters Awareness Week

Pilgrims is running a series of free ACP sessions to give you ideas about how to express your wishes.

Who are ACP sessions for?

All are welcome, including Pilgrims patients, carers, family, friends and members of the public.

When and where?

  • Monday 8 May, 10am – 12pm at Pilgrims Hospice Canterbury
  • Tuesday 9 May, 1:30pm – 3:30pm at Pilgrims Hospice Thanet
  • Friday 12 May, 2pm – 4pm at Pilgrims Hospice Ashford.

Each is a single session lasting up to two hours.

These events are part of a series of free community events across east Kent during national Dying Matters Awareness Week (8-14 May 2017).

This year’s theme is #WhatCanYouDo. It looks at ways people can be more active in planning for dying and death and helping support others in times of grief and bereavement, whether they’re friends, family or in the wider community.

Pilgrims events that took place in Dying Matters Awareness Week:

Find us on Facebook or Twitter to join in the conversation. Share your stories and pictures using the hashtag #WhatCanYouDo.

If you or a member of your family is coping with a terminal illness and you want to know about the full range of Pilgrims services, please click here to find out more.