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

Macmillan Cancer Support reports that a need for patients with a diagnosis of cancer to  ‘fight’ and remain positive could be having a negative effect on people living with the disease. Over 75 per cent of people with cancer have thought about the possibility that they might die from the disease, however the report identifies a number of barriers to them being able to discuss this honestly. 

According to health and social care professionals, one of the largest obstacles is within the pressure to stay positive and support people to fight cancer, even in the face of a terminal diagnosis.

Macmillan Cancer Support indicates that while it is a commonly held belief that describing people with cancer as ‘fighters’, keeps a person’s spirits high and instils in them a sense that the professionals supporting them are helping them to ‘fight the battle’.  While some may find this language helpful, Missed Opportunities highlights the challenging contradiction of this fighting talk for people at the end of their lives.

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Image source: macmillan.org.uk

Key findings from the 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
  • More than one in four people with cancer (28%) have difficulty talking honestly about their feelings around cancer
  • Gulf in communication means thousands of people with cancer unnecessarily die in hospital against their wishes
  • Advance Care Planning, discussing end of life wishes, can significantly improve end of life experiences

(Source: Macmillan Cancer Support)

In the media:

BBC News Cancer patients urged to discuss ‘end of life’ plans

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Sue Ryder: “It’s time to open up a national conversation on death and dying” to end ‘taboo’ of speaking about death

The charity Sue Ryder has called for there to be a ‘national conversation’ about death and greater  dialogue between health and care professionals and families about what to expect, and what they can do, as the death of someone close approaches.  This follows new research, launched  as part of the charity’s  ongoing  #FacingLossTogether campaign. (Sue Ryder)

Heidi Travis the chief executive said: “death is an inevitable part of all our lives, and yet in modern society […] it has become a taboo subject that many of us find difficult to broach.”

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The charity’s survey reveals a significant number of people struggle with uncertainty about what to do when someone close to them is dying.  The research among 1,000 bereaved adults in UK found that:

  • over 40% of those that had questions or worries wanted to know what physical or mental changes they should expect when someone close to them was near death.

Other key questions and worries included:

  • whether to bring up difficult issues with their dying family member or friend before the end of their life (21%)
  • how to make them more comfortable (58%)
  • whether they should die in a more comforting environment than a hospital ward (18%)
  • the last words they should say to them (40%)
  • who should be there in the final moments (36%).

The full press release is here 

Further information and a factsheet: When a loved one is nearing death, what can you expect and what should you do?  can be found on the Sue Ryder website 

BBC News: Call to end ‘taboo’ of talking about death 

Talking about end-of-life care

The purpose of the paper is to describe how residents express preferences for end-of-life (EOL) care | Geriatric Nursing

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For this qualitative study, we conducted semi-structured interviews and completed conventional content analysis to describe how residents’ expressed their preferences for care at the end of life. Sixteen residents from four nursing homes (NH) in southeastern Pennsylvania participated in this study. Residents were on average 88 years old, primarily non White, and widowed. Three key domains emerged from the analyses: Preferences for Today, Anticipating the End of My Life, and Preferences for Final Days. Residents linked their everyday living and EOL preferences by using ‘if and then’ logic to convey anticipation and readiness related to EOL. These findings suggest new strategies to start discussions of EOL care preferences with NH residents.

Full reference: Towsley, G.L. et al. (2017) Talking about end-of-life care: Perspectives of nursing home residents. Geriatric Nursing. Published online: 01 August 2017

My patient is 93 and has pneumonia. It’s time to talk about her death

Doctors don’t like to lose but she tells me she is ready to go. Now it’s important to maintain her comfort and dignity | The Guardian Healthcare Network

Mrs S is 93 years old and has severe pneumonia. She is sitting up in bed, with a big unwieldy mask strapped to her nose and mouth like a facehugger from Alien. This device is all that keeps her from lapsing into a coma. I sit at her bedside. We have just met. I am here to talk to her about her death.

As the medical registrar for a big hospital, I am often called in to help by other specialties when trouble arrives. Some days, by the time I’m summoned, trouble has already got its feet under the table. On rare days, I really am there to save lives. Other days, I feel like the grim reaper, stalking the halls like death in a pencil skirt.

As our knowledge continues to advance, and the menu of available treatments continues to expand, we can do more and more to keep people alive. But every day in hospitals up and down the country, the debate continues to rage as to what we should do. It’s a discussion that sounds like it should have a simple answer. Patients want to live; families want to do their best for their loved ones; doctors don’t like to lose and it’s easy to default to a “Do everything that you can” mindset.

Read the full news story here

How are non-numerical prognostic statements interpreted and are they subject to positive bias?

Frank, clear communication with family members of terminally ill or incapacitated patients has important implications for well-being, satisfaction with care and sound decision-making | BMJ Supportive & Palliative Care

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Objectives: Numerical prognostic statements, particularly more negative ones, have been found to be interpreted in a positively biased manner. Less precise non-numerical statements, preferred by physicians, and particularly statements using threatening terms (dying vs surviving) may be even more subject to such biases.

Methods: Participants (N=200) read non-numerical prognostic statements framed in terms of dying or surviving and indicated their interpretation of likelihood of survival.

Results: Even the most extreme statements were not interpreted to indicate 100% likelihood of surviving or dying, (eg, they will definitely survive, 92.77%). The poorness of prognoses was associated with more optimistically biased interpretations but this was not, however, affected by the wording of the prognoses in terms of dying versus surviving.

Conclusions: The findings illuminate the ways in which commonly used non-numeric language may be understood in numeric terms during prognostic discussions and provide further evidence of recipients’ propensity for positive bias.

Full reference: Moyer, A. et al. (2017) How are non-numerical prognostic statements interpreted and are they subject to positive bias? 

Passed away, kicked the bucket, pushing up daisies – the many ways we don’t talk about death

Fear of talking about dying ‘leading to thousands of traumatic hospital deaths’

Cancer charity says there is a ‘crisis of communication’ in UK over dying | The Independent

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Thousands of cancer patients would prefer to die at home but are forced to suffer “traumatic” deaths in hospital, according to Macmillan. Taboos around talking about death are fuelling a “crisis of communication” in the UK that prevents people from planning their final days, warned the organisation in a new report.

Research by the charity found that while 38 per cent of people who die from cancer die in hospital, just one per cent would choose to do so, with 64 per cent saying they wanted to die at home.

Read the news article here