Timely conversations: how to determine patients’ wishes at the end of life

‘What matters most’ discussions are fundamental to advance care planning and personalised care

‘What matters most’ discussions are fundamental to advance care planning and personalised care

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More people are now dying at home, as many nurses have witnessed during the pandemic.

A third more people died at home during 2020 in England and Wales than would normally have been the case, according to the Office for National Statistics.

Advance care planning and timely conversations about what matters

In the recent end of life care survey by Marie Curie and Nursing Standard, exhausted nurses warned there simply aren’t enough staff to care for the growing numbers of people dying at home, which is putting pressure on families to care for loved ones.

One in three of the 548 UK nurses who responded to our annual poll said staff shortages were the main barrier to providing end of life care.

When someone is approaching the end of their life, it’s important for everyone involved to understand what matters most to that individual. This can help loved ones with the grieving process and allows both parties to feel heard, involved and able to be part of prioritising what happens next, right until the end.

This isn’t a one-off conversation but a discourse over time and it allows the individual to articulate what is most important to them.

For people with a life-limiting or terminal illness, or those who are becoming older and more frail, the time comes when more frequent involvement of health professionals is needed. And timely conversations form the foundations for advance care planning.

The things that matter to the individual will guide the decisions agreed between them and their main healthcare professional. These considerations should be at the heart of holistic advance care planning, enabling their social, emotional and spiritual needs to be seen as important in informing their decisions about the ceiling of care and treatment.

Build your confidence to initiate ‘what matters most’ conversations

The pandemic has highlighted how unpredictable life can be. We should encourage everyone to talk to loved ones, friends and carers and discuss what matters most when the time does come.

While our survey offers hope in showing that about one in three nursing staff (30%) have grown in confidence to initiate these conversations since the pandemic, we need to practise using open questions. These can be as simple as asking someone ‘how are you today?’ and ‘tell me what matters most to you today’.

More of my nursing and clinical colleagues are using ‘what matters most’ conversations in their everyday practice and have said how much it opens up conversation with individuals and guides discussions about care and treatment priorities.

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Lobbying for built-in provision of palliative care

As nurses we can ensure our patients are heard and understood but there is currently no plan from the government to ensure people dying at home get the care and support they need.

The Health and Care Bill, which looks at reforms to healthcare and is currently before parliament, does not mention palliative and end of life care.

Marie Curie is urging MPs to support calls for an amendment to the bill to create a legal duty to commission palliative care services in every part of England.

Care plans that reflect the individual’s wishes

Conversations about what matters most to someone need to lead into a more formal approach to advance care planning.

NHS England and NHS Improvement is undertaking work in response to the findings of the recent review by the Care Quality Commission that concluded the human rights of more than 500 people may have been breached when do not attempt cardiopulmonary resuscitation (DNACPR) decisions were made during the first wave of the pandemic.

This work is looking at documenting what matters most conversations and the formation of care plans by an experienced healthcare professional involved in someone’s care. We need to start paving the way for these changes and this is a positive step.

Prioritising personal preference and what matters to the individual

It’s often quite small, personal things that are important to individuals. I remember one man who was recovering from a nasty chest infection and his swallowing reflex wasn’t very good or strong. The assessment from the speech and language therapist recommended he be nil by mouth. He was really distressed to hear this, as eating and drinking was what mattered most to him. It was one of the few pleasures he had left, as his mobility had also deteriorated, and his world was becoming smaller.

We had conversations with his medical team and agreed that, although there were risks, he understood what they were. His care plan was adjusted to enable him to have small amounts of food and drink, as it mattered to him.

While he didn’t have the biggest appetite, when he did want a meal or something to satisfy a craving, he could go ahead.

This is only one example, but it sums up the importance of giving yourself permission not only to assess risk from a professional point of view, but also in relation to what matters to the person in your care.

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