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Providing patient-centred care at the end of life

Adequate support following a terminal diagnosis ranks as a top priority for achieving good patient care, yet recent reports have suggested patients are being let down. Here, Maggie's chief executive Laura Lee discusses how cancer nurses are in a prime position to address some of the issues and close the gap in support.

Adequate support following a terminal diagnosis ranks as a top priority for achieving good patient care, yet recent reports have suggested patients are being let down. Here, Maggie's chief executive Laura Lee discusses how cancer nurses are in a prime position to address some of the issues and close the gap in support


Picture: Getty Images

Providing person-centred care and support to people with cancer has been at the core of Maggie’s mission since its inception in 1996. Cancer care has changed phenomenally and for the better in that time, as has the wider end of life care sector. Yet according to successive policy reports, many people are still not accessing truly person-centred care.

What more can be done and what part can nurses play? What do dying people and carers feel is lacking and what do they value?

Compassion in Dying, a charity that helps people talk about and plan for the end of life, recently consulted more than 600 dying people and their carers. The research revealed that many people are not being given clear information about their condition, adequate support to make care and treatment decisions, or sufficient opportunities to discuss their future care.

Good sources of advice

More encouragingly, respondents reported positive experiences when seeking information and advice from nurses over doctors. Generally, nurses were seen as good sources of advice and emotional support, particularly in providing documentation to facilitate advance care planning and keeping track of choices made by patients.


The Compassion in Dying cover

Many felt that nurses had more time to spend on sensitive or difficult conversations and were more open to having these discussions than doctors.

Despite this praise, however, many respondents still felt that some nurses they had encountered remained uncomfortable or unwilling to discuss issues and decisions relating to the end of life.

I started out as an oncology nurse and I appreciate that, even for the most experienced among us, conversations following a life-limiting diagnosis can be challenging.

Clearly, patients nearing the end of life value the interpersonal and communication skills that nurses possess. But when nurses are stretched to the limit, they can’t always make the most of those skills. To fully support those in their care to make informed choices, nurses need practical tools that will empower them to do so.

Guidelines from research

An innovative new booklet has been developed using the voices of those involved in the Compassion in Dying research. It is primarily for people who have received an incurable or life-limiting diagnosis, their carers and loved ones, but it can also be of great value to nursing staff.  

What Now? Questions to Ask After a Terminal Diagnosis contains thoughts on diagnosis, living with incurable illness, impact on loved ones and how to make informed decisions. The suggested questions to ask include ‘What support is available to me and my family?’ and ‘What kind of changes will I have to make in my work, family life, sex life and leisure time?’.

Cancer nurses are in a prime position to help address some of these issues – we often employ former cancer nurses in Maggie’s Centres because of their unique skills and experience. Practical tools like this booklet can support them to make the most of their skills by helping them pre-empt patients’ concerns and guide difficult conversations.

Empowering patients to make the choices that are right for them, particularly after a life-changing cancer diagnosis, should be central to delivering truly person-centred care. But if we are to achieve that, we must also empower the nurses who are supporting them – and tangible solutions like this should be welcomed wholeheartedly.

Copies of What Now? Questions to Ask After a Terminal Diagnosis can be ordered from the Compassion in Dying website.

Maggie's Centres information


About the author

Laura Lee has been chief executive of Maggie’s since 1998 and has seen the development of 21 Maggie’s Centres in the UK and abroad, as well as an online centre.

Maggie’s provides free practical and emotional support to people with cancer and their family and friends.

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