Table 1

Scenarios used in healthcare professionals’ workshop

Scenario 1: patient aged 16–40 years with haematological malignancyScenario 2: patient aged 25–40 years with oncological malignancy
Mannu, 19, diagnosed with Hodgkin’s disease in December 2013. Between December and June treated with curative intent. Relapsed June 2014—no sibling bone marrow donor available—deteriorated before one could be found.
Science student—sporty. University not local. Friends all at university. School friends all over country also at university. Keeps in touch with friends via Facebook.
Returned to live with mum, dad and sister aged 12. Grandparents supportive—all aware of diagnosis and prognosis. Sikh faith. Supportive in background. Home is a three-bed semi with a bathroom upstairs and downstairs toilet.
November 2014
Inpatient. Deteriorating—wants to be at home. Unable to do stairs therefore need to make adaptations.
  • Symptoms—shortness of breath, cough and fatigue.

  • Care—family keen to do.

  • Discharge home with Community Palliative Care Team input.

  • Contact with charities— Willow Foundation, CLIC Sargent

December 2014
Increased fatigue. Treated with radiotherapy to chest. Cough and fatigue.
January 2015
Further deterioration. Bed bound. Home oxygen. Anticipatory medications.
Helen, 38, diagnosed with colon cancer in May 2014. Helen lives with her partner and their 18-month-old baby. Soon after diagnoses she had surgery for a stoma fitting and was diagnosed with liver metastases a few weeks after.
She has support from her parents, brother and her partner’s parents. She is currently on sick leave and misses friends from the office. They have reduced income due to her being on maternity leave before her diagnosis, although she has critical Illness Policy which will pay off their mortgage and so this is reassuring for her.
She lives an hour’s drive from her parents in a duplex house with stairs. She is getting more symptomatic and experiencing fatigue. Partner is concerned about coping with a young child and partner as she deteriorates.
September 2014
Helen has lost weight and is aware that she is getting weaker and has difficulty picking up/carrying her child. She is currently on a 24/7 syringe driver and the District Nurse visits daily. Referral to hospice palliative care has been made but she has not yet been in contact. Helen is referred for a clinical trial as still relatively well and no conventional treatment options.
December 2014
Chemotherapy stopped as disease not responding—parents devastated. Parents not able to access psychological support as they live ‘out of the area’.
Advanced care planning with clinical nurse specialist causes tension as parents do not wish Helen to be ‘not for resuscitation’.
February 2015
House requires adaptations due to her physical condition. Increasingly housebound due to steps and steep hill.
Partner feels he can no longer cope as Helen’s condition deteriorates further.