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‘Fighting talk’ can leave cancer patients in Wales unable to talk about death and dying

Reluctance to talk honestly about death is preventing people with cancer from dying ‘well’, leading charity warns

 

Findings in Macmillan’s report include:

 

  • The perceived need to ‘fight’ cancer often means people with a terminal diagnosis aren’t getting the right support to plan for end of life

 

  • Almost a quarter of people with cancer in Wales (24%) have difficulty talking honestly about their feelings around cancer

 

  • A gulf in communication means thousands of people with cancer in the UK unnecessarily die in hospital

 

  • Advance Care Planning, discussing end of life wishes, can significantly improve end of life experiences

 

The need to ‘fight’ and remain positive could be having a negative effect on people living with cancer, a new report from Macmillan has revealed.

According to research by YouGov for Missed Opportunities, more than three quarters (77%)iv of people with cancer in Wales have thought about the fact that they may die from their disease.

 

However, in-depth conversations with health and social care professionals and people with cancer reveal there are a number of barriers preventing honest conversations about dying from taking place.

 

Health and social care professionals report that one of the biggest barriers to introducing conversations about dying is the pressure to stay positive and support people to ‘fight’ cancer, even when they have received a terminal diagnosis.

 

In fact, of those people surveyed who had spoken to their healthcare team about dying, only 19%vi of conversations across the UK were initiated by a health or social care professional.

 

Nearly one in four people with cancer in Wales (24%)vii also find it difficult to talk honestly about their feelings around cancer, and a similar amount (27%)viii feel guilty if they cannot stay positive about their disease.

 

For many, this gulf in communication means vital conversations – particularly about end of life preferences and wishes for things such as where they would like to die – are not had until it is too late, if they are had at all. This means thousands of people with cancer in the UK are unnecessarily dying in hospital.

 

It is a commonly held belief that describing people with cancer as ‘fighters’, keeps a person’s spirits high and instills in them a sense that the professionals supporting them are helping them to ‘fight the battle’.

 

Although some may find this language helpful, Missed Opportunities highlights the challenging contradiction of this fighting talk for people at the end of their lives.

 

Macmillan Wales wants to encourage and support health and social care professionals to facilitate more open and honest conversations about end of life using a process known as ‘Advance Care Planning’.

 

This allows people to discuss their individual worries, values and preferences for their care and can significantly improve people’s experiences of care at end of life.

 

Christine Fretwell, a Macmillan Advance Care Planning Facilitator working in Aneurin Bevan University Health Board said: “Health and social care professionals often worry about the right time to begin a conversation about dying and people’s preferences for their end of life care.

 

“These conversations are not easy, and a key part of our programme is about helping health care professionals to feel more confident in how they approach them.

 

“It is so important for us to help encourage people to share their preferences - it often results in a far better care experience for both patients and their loved ones.”

 

Pat Worlock, also a Macmillan Advance Care Planning facilitator added:

 

“Quite often, we find that patients don’t realise they have a choice – a choice about pain management, the treatment they receive and the place they would prefer to die.

 

“Once people realise that they can help shape their own end of life care, they can often feel a sense of relief because they have managed to take back a little bit of control.”

 

Richard Pugh, Head of Services for Macmillan in Wales said:

 

“What this report reveals, is the need for us to let people define their own experiences, and to avoid language that might create a barrier to conversations about dying.

 

“We not only need patients and professionals to feel more comfortable in talking about preferences for end of life care, but to make sure the system can meet these preferences so that the advance care plans people put in place can be acted upon wherever practically possible.”

 

Macmillan Wales is now calling on the Welsh Government to help ensure there is an unwavering focus on early identification of people nearing the end of life, so that people are offered timely advance care planning before their health deteriorates, and that patients wishes can be easily accessed between healthcare settings and acted upon by healthcare professionals.