Background There was uncertainty over the words to use to describe the care we provide and type of patients we support, particularly following the transfer of an NHS service to our hospice management in 2015. Other hospices use inconsistent language, so there was no clear direction to follow to create our own language.
Aim In March 2016, we undertook some research to enable us to understand the best phrases to use with supporters, the general public and patients/relatives.
Methods Quantitative research using an online survey was undertaken with 533 supporters and general public; qualitative research through six discussion groups was undertaken with staff, volunteers, patients, carers, supporters and general public; and telephone interviews with seven local GPs.
Results ”Illness” was preferred as descriptor, over others like “condition” or “disease”.
‘Terminal illness’ was established as the best phrase for those receiving hospice care and chosen equally by both supporters and general public, but should be softened by saying “living with a terminal illness” to make it more positive and hopeful.
Rejected words: Life-limiting, Life-changing, Incurable, Serious Progressive, Advanced.
‘Hospice care’ is used our name, so does not to be in the descriptor of the type of care. On its own it can suggest that we only provide care in a hospice building, for in-patients only.
‘End of life care’ was established as the best phrase to describe type of care, as it was safe, specialised, supportive and inclusive, but we should also include ‘Supportive Care’, as it suggests that the family are supported as well as the patient, and we also provide non-physical care for the patient.
Rejected words: Palliative, Holistic, Specialist, Rehabilitative, Care in the last days
Conclusion Phyllis Tuckwell Hospice Care provides supportive and end of life care for patients and families living with a terminal illness.
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