What is Advance Care Planning?

Having conversations about your future care with your clinical team ensures your wishes and preferences will be respected if you’re unable to communicate them. In this blog, Clinical Nurse Specialist Heather Calver demystifies Advance Care Planning.  

How to make an Advance Care Plan 

Advance Care Planning, which is a way to express what matters most to you, both to your loved ones and the clinical team caring for you. Talking about your future care can feel daunting and upsetting, but it is empowering, too. It’s a way of ensuring that your thoughts, feelings, and wishes are heard by the people who matter most to you.

Discussing your wishes with your clinical team ensures your preferences will be documented and respected if for any reason you are unable to communicate them in the future. In this blog, Clinical Nurse Specialist Heather Calver demystifies the Advance Care Planning process.

What is Advance Care Planning?

Advance Care Planning (ACP) supports you to consider what’s important to you as you approach the end of your life, including what sort of care you want to have, who you want to have around you, and who should be consulted if you become too unwell to make decisions.

An ACP reflects clinical preferences, but it is also a chance to honour and celebrate the unique, cultural, spiritual, and personal aspects that matter most to you.

The content of an Advance Care Plan (ACP) is individualised and will vary from person to person. ACP is a discussion that evolves over time, and any documentation should be changed to reflect the flow of your life. For example, someone undergoing cancer treatment may wish to have all available interventions, whilst a patient approaching the end of their life may wish to avoid hospital admissions and be made comfortable in their own home.

Medical professionals will also need to know who to talk to if you’re unable to make decisions or communicate your wishes yourself. This will be your next of kin or someone with Lasting Power of Attorney.

If you are already under the care of St Barnabas House, a member of our team can talk to you about making an ACP. The Wellbeing Programme at our Living Well centre also includes a session on planning for the future, and you can self-refer to this programme.

Is it legally binding?

ReSPECT stands for Recommended Summary Plan for Emergency and Treatment. This can be completed with an appropriate health care professional and should involve any family member or loved one you wish to be part of the discussion.

ReSPECT creates a personalised care plan, with recommendations for clinical care and emergency situations where you may not be able to express wishes yourself. ReSPECT reflects both your wishes and the recommendations of your clinical team; it is not a legally binding document.

Your ReSPECT form becomes part of your medical records, so anyone caring for you can quickly ascertain your wishes and preferences for treatment.

You can make a choice to refuse certain treatments, and this can be documented in an Advance Decision to Refuse Treatment (ADRT), which forms part of the ACP process.

To be recognised as a legally binding document, an ADRT must be in writing, signed by you and witnessed by doctors or nurses involved in your care. It can include specific information around which treatments you do not want, and under which circumstances.

You can refuse treatment that may keep you alive, which might include resuscitation, breathing with machines, or certain medicines. It is always good to talk this through with a healthcare professional so you can make informed and supported decisions about your future care.

Honoring the individual

When thinking about your ACP, it is useful to ask yourself what is most important and meaningful to you. For example, where do you want to be cared for, and by whom? Would your preference for end-of-life care be at home, in a hospice if possible, or somewhere else?

Sharing your wishes about your care can help everyone involved understand your needs, so they can give you the best possible care. This could be anything from dietary preferences, to how you like to do things – if you prefer a shower to a bath, for example.

We are all individuals, and honouring what matters most to a person is a way of celebrating who they are at their end of their life.

Planning for the end of life

As clinicians, we want to know what’s important to you so we can make sure we are celebrating your individuality. For example, you might want a particular person to be by your side where possible, including sleeping in your room at the hospice. Having loved ones and familiar objects close by helps us feel calm and safe.

Here at St Barnabas House, we do everything we can to support people to live and enjoy life until the end. Our team has helped from anything to organising weddings to milestone birthday celebrations – it’s always an honour and a privilege to share in those moments.

Lots of people want to see their pets, and we’ve welcomed dogs, cats, and even horses here at the hospice. If we know someone loves nature, we’ll try to make sure they can enjoy time in the patient gardens to listen to the birds.

Spiritual, cultural, and religious beliefs

There are many differing ways in which cultures and faiths approach the end of life and it is important that these needs are understood and respected. If there are certain religious customs or rituals that are important to you, it’s a good idea to include them in your ACP.

Our culture is central to who we are and might be reflected in our language, our food, our daily rhythms, or specific end-of-life care practices. We want everyone to feel seen and heard, and having an ACP can support those involved in your care to honour you.

If you would like to start Advance Care Planning, talk to one of the healthcare professionals involved in your care. Your clinical nurse specialist, GP, or hospital consultant can help with the process. You can find other resources below.