Living with Dying

Message to health, social care workers and government

Many people were grateful for the care they had received during their illness and wished to pass on their thanks to all those who had helped them. They also had important messages that they hoped to convey to doctors, nurses, other health and social care workers and government ministers'

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Health professionals

  • Give patients more time, invite them to ask questions 
  • Don't make assumptions: take time to identify patients' real concerns about their treatment and prognosis
  • Listen carefully to what patients have to say, they know what is happening in their own bodies
  • Be honest but tender with people who have terminal illness
  • Don't treat patients as numbers - look at the whole person
  • Talk to patients in a private, quiet setting
  • Don't have whispered conversations -patients have a right to know what is happening to them
  • Tell patients about the side effects of treatments
  • Pay more attention to nutrition
  • Make positive suggestions if possible
  • Reduce the jargon
  • Continuity of care is important
  • Assume patients are aware of what is happening even if they can't communicate
  • Offer thorough follow up checks to give patients peace of mind
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  • Social services should be better organised. 
  • Social care staff need to explain their systems to others (e.g. that patients will need to sign a piece of paper so that agency staff can show they have done the work required)

General

  • Help is needed to set up support groups
  • Patients need advice about benefits, wills, Advance Decisions and other practical matters
  • The government should provide money to help user groups concerned with palliative care to work together
  • User involvement must not be tokenistic - they need to make a difference
  • Small changes can make a big difference, e.g. transport to hospitals, drinks being easily accessible in hospital outpatients
  • More hospices are needed for non-cancer patients (see 'Insufficient hospice care')

Last reviewed July 2017.
Last updated August 2014.

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