Advance care plans: my tips for nurses on discussing end of life

RCN Nursing Awards 2022 Patient’s Choice winner Sarah Malik champions choice and communication to empower patients in her role at charity Compassion in Dying

Sarah Malik, winner of the RCN Nursing Awards 2022 Patient’s Choice category

When Sarah Malik left clinical nursing as she was starting her family, she missed it so much it was almost painful.

As it turned out, that difficult career decision was to lead to exciting opportunities, eventually with Compassion in Dying, where Ms Malik is now clinical lead and services manager.

Advocacy work helps people plan for better end of life care

Her role involves supporting people to discuss their health concerns, consider treatment options, make decisions in line with their values, and record their preferences for future care through the charity’s free information line. She also brings a clinical voice to the charity’s policies and publications.

‘I give people the information and tools they need to ensure their wishes are known about and respected.’

Sarah Malik, Patient’s Choice Award winner 2022

Although initially saddened to leave clinical practice, Ms Malik quickly realised how much she loved the communication aspect of her role – and the opportunity for patient advocacy.

She wants to promote the importance of people having choice about their care towards the end of life – and to bust ‘myths’, such as the belief that next of kin can automatically make decisions for people if they lack capacity.

Dispelling myths about end of life care and decision-making

Picture: iStock

Points to remember about end of life decision-making, by Sarah Malik:

  • Any adult can plan – you don’t need to be old or ill
  • Next of kin have no legal right to make decisions for you
  • Putting affairs in order should not focus solely on what happens after death, but also on when there is a loss of capacity to make complex decisions
  • Solicitors and clinicians are not required to be involved in the process of completing advance decision documents

Benefits of advance care planning

  • Offers peace of mind
  • Treatment and care are more likely to align with the person’s values
  • Helps the relatives and the clinical team
  • Reduces the potential for conflict between family members and clinical team
  • Reduces unwanted emergency admissions

Guidance for people when making advance care plans

‘I’m passionate about choice and helping people to get the treatment and care that’s right for them,’ Ms Malik says. ‘I give people the information and tools they need to ensure their wishes are known about and respected.’

It is for this work that Ms Malik won the RCN Nursing Awards 2022 Patient’s Choice category, sponsored by healthcare uniforms supplier Alexandra.

Her nominator Elizabeth Pepper said the support Ms Malik gave her and her late husband, including guiding them through the process of writing advance decision documents, was immeasurable.

Ms Pepper said: ‘Without her compassion, empathy, support, skill, knowledge and understanding, neither my husband nor I would have begun or persevered in writing our advance decisions. At the time of his death, I learned how critical it is to have this in place.’

Ms Malik says she is honoured to win the award. ‘I love the work I do, and I feel proud that, as a result, the work we all do at Compassion in Dying has been “seen”. It feels really meaningful.

‘And I’m happy for the opportunity to focus on what more needs to happen to support more people to have the end of life that is right for them.’

How to approach a conversation about advance care plans

Sarah Malik’s advice on initiating and having conversations about advance care planning:

  • These conversations can be daunting, but people appreciate the opportunity to talk about dying and their right to plan
  • Be ready to hear things/preferences that you may not agree with – listening with an open mind is a huge part of person-centred care
  • Having the conversation is important, but talking is not enough; wishes must be documented if they are to be respected in the future
It is important to listen for cues from patients that they may want to discuss end of life care decisions Picture: Stephen Shepherd

Cues someone wants to talk about advance care planning:

  • ‘I’m worried about what's going to happen in the future’
  • ‘I know someone who is living in a care home with no quality of life – I don’t want that’
  • ‘I don’t want to be a vegetable’
  • ‘I’m not sure if I need to get anything in place just yet?’
  • ‘Can I have a DNACPR?’
  • ‘I’m getting on and I want to start getting things organised’

How nurses can respond to these cues to find out more:

  • ‘Is there anything you don’t want to happen to you?’
  • ‘Is there anywhere you know you would like to live and be cared for?’
  • ‘Who are the important people in your life that you would like to be involved?’
  • ‘Do you have religious or spiritual beliefs that affect how you want to be cared for?’

Further information

The Patient’s Choice Award is sponsored by Alexandra

Jennifer Trueland is a health journalist