Courtenay and Demar – their story
Shared goals of care: effective communication and shared decision making, a whānau perspective
Courtenay Mihinui shares the story of her journey through the health system with her daughter Demar.
Demar contracted meningitis at five-months-old and deteriorated quickly in hospital. At the time Courtenay was confused and upset, with Demar’s condition explained to her in terminology she didn’t understand.
When Demar was 12 she contracted pneumonia and this time Courtenay was given time and space to react to information about Demar’s condition, and autonomy to decide which actions to take. Courtenay hopes that honesty, respect and sensitivity will be offered to families and whānau facing difficult situations within the health system in future.
Courtenay’s top tips for a new clinician talking about the possibility of a patient dying:
- be real - admit that you don’t know everything, admit that you’re uncomfortable
- be honest
- be respectful.
Dave Churchman and his wife Diane share their story of life for Dave after his diagnosis of cancer. Dave was literally up a ladder striping the wallpaper at home when he realised he was feeling very unwell. The backdrop of the stripped back wall in this video is a symbol of a life interrupted. Dave and his wife share their experiences about their interactions with their GP and the hospital after Dave’s diagnosis. It is about communication, advance care planning and the language used in patient care.
Matthew was 16 years old when he developed appendicitis. His mum, Heather, took him to the local emergency department and he had surgery that night to remove his appendix.
Matthew had complications following surgery and he stopped breathing. He was resuscitated, and was eventually transferred to the ward to recover, despite having coughed up pink foam. The following morning, Heather and her husband David received a phone call to say that Matthew wasn't breathing, and they rushed to be with him. He was transferred to Christchurch Hospital by air ambulance, and given a five percent chance of survival.
A few days after arriving at Christchurch Hospital Matt was finally stable enough to have an MRI. The results were devastating, showing that Matt had no oxygen getting to his brain. After discussions with the family and doctors a decision was made to turn off his life support the following day.
Matthew died of global hypoxia due to negative pressure pulmonary oedema. He should not have died and many opportunities were missed to intervene.
In this video, Heather talks about the events leading up to Matthew's surgery and what happened in the days after.
The director of nursing at West Coast District Health Board, Karyn Bousfield, also talks about what went wrong from a care perspective, the systems and process that may have contributed to the outcome, and the recommendations made to improve these in the future.
Rasik is the main carer for his sister. He shares the story of supporting her through a first hospital admission for surgery, and through many subsequent admissions over the following five years. His story raises issues of communication with health professionals, coordination of care, and how it feels when things don’t seem to be going well.