It is relatively uncommon for young people aged 16-40 to be diagnosed with cancer. Nevertheless, one quarter of all deaths in 16-40 year olds are due to cancer. At present little is known about these patients’ experiences of care and what is important to them as the end of their life approaches. It is important to know this so that health and social care professionals can offer and provide care that meets the needs of these patients and their families and friends.
‘When cure is not likely’ aimed to understand:
-The most important parts of the end of life care for people with cancer aged 16-40 years
-Whether differences exist between the experiences of people with cancer who are aged 16-24 and those aged 25-40 years.
-How young adults and their families can be supported during the end of life to achieve their preferences for care.
-The challenges that exist for health and social care professionals providing care.
What did we do?
Based at University College London Hospitals, When cure is not likely worked with multiple NHS Trusts and Hospices in England to identify young adults with cancer for whom cure is not likely and invite them to take part in an interview to talk about their experiences of care. Young people were interviewed by a study researcher at a time and place of their choosing and asked about their experiences taking in what has happened, what is happening at the time of the interview and their thoughts about the future. The study had two cohorts. Young people (16-24 yrs.) in cohort one were interviewed once. In cohort two young people (16-40 yrs.) were interviewed once and asked to nominate a family member and a health care professional, who shared their experiences and views in an interview.
In addition workshops involving bereaved family members and health care professionals were conducted to widen our understanding around the provision of end of life care and the experience of bereavement.
What were our findings?
Data collected included 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals; and financial concerns.
Current care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16–40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services.
The findings of this study have been published, and are accessible via this link.