Communication: The first step to ensuring person-centred care at the end of life

Picture of Natalie Koussa from Compassion in DyingNatalie Koussa is Director of Partnerships and Services for Compassion in Dying, one of the Coalition for Collaborative Care’s (C4CC) partners. In this blog post Natalie stresses how conversations are a critical part of delivering person-centred care at end of life. Natalie shares two experiences to highlight the impact that good communication can have and shares a newly published booklet that can help people consider and record their wishes for healthcare and treatment.

Picture this: a man in his 90s with memory problems. He is widowed and living alone in his own home with help from family and carers for daily tasks. His health takes a downward turn when his kidneys begin to fail. His doctors tell his family that the man doesn’t have the capacity to make a decision over whether or not to receive dialysis treatment.

His family are at a loss – they have never spoken to him about what he would or wouldn’t want in a situation like this, and now he can no longer tell them. They are trying to work out how to make this weighty decision while dealing with the news that a loved one is seriously ill. Family members might disagree with each other or doctors about what they think is best, compounding what is already a difficult and upsetting situation.

Now picture an alternative scenario: the man takes the time to talk about his wishes with his family while he is still able. They speak about what is important to him (living at home, spending days in the garden and watching the sea) and what he finds difficult (travelling and having to visit new places). They talk about who he would want to make decisions on his behalf if he no longer could, and he decides to appoint his son as his attorney for health and welfare.

When his health takes a turn for the worse and doctors look to his family for guidance, they are still deeply saddened, but instead of feeling lost they feel empowered. The dialysis might delay things for a few more months but would cause major upheaval in his life, with frequent and lengthy trips to the hospital. It is not an easy decision, but having had those all-important conversations his son is able to reflect on what his father would have wanted and refuse treatment on his behalf while keeping him comfortable and pain-free. This allows his father to spend his final months doing the things he enjoyed most – seeing his family and enjoying his garden.

Fortunately, the second version is the truth. The name of the man is Christopher, and his son Peter Coe, 69 from Lyme Regis, has shared his experience in Compassion in Dying’s new booklet, Planning Ahead: My Treatment and Care.

Planning Ahead is designed to help people consider and record their wishes for healthcare and treatment, so that they can get on with living life safe in the knowledge that they have prepared for the future. It explains in clear, straightforward language the information people need to understand how treatment and care decisions are made, how they can plan ahead to ensure they stay in control of these decisions, and who to talk to and share their wishes with. What Christopher and Peter’s story illustrates so well is how helpful honest conversations are to this process.

‘Conversation’ is one of the Coalition for Collaborative Care’s ‘Three Cs’ precisely because conversations are an important way to build the shared understanding needed to offer compassionate and personalised care; but talking about the end of life can seem a daunting and difficult task for individuals, family members and healthcare professionals alike. That’s where Planning Ahead comes in – it serves as an easy-to-follow guide which can prompt different discussion topics and ease conversations about people’s values and concerns when it comes to their future treatment and care.

If we are to ensure that people receive person-centred care at the end of life, talking is the first step. We hope that Planning Ahead will help encourage and inform these conversations so that more people have experiences like Christopher and Peter’s.

@NatalieKoussa / @AGoodDeath

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