Too many tests?
In the healthcare system, the focus is on reduction of bed-days, good patient care progress, guidelines on prioritisation, communication with the patient and next of kin, research and professional guidelines. What about quality and enjoyment of life in the midst of all this? Will a properly assessed MRI result in a better life? Medically, yes, because it provides treatment options, but perhaps not from a human standpoint. How to ensure the right decisions? In my opinion, therapists ought to review all clinical procedures and actually ask themselves: Is this necessary? Our experience was that many of the blood tests, medical examinations and periods of hospitalisation could have been avoided.
As parents of a sick child, we had to insist that medical tests were performed at the local hospital. It seemed a waste of time to drive for 3–4 hours to take a blood test, give intravenous medication or flush a venous catheter when the same procedures and patient care are available locally, a car journey of 20 minutes.
Must all children who walk in the shadow of death have parents who fight like lions to ensure home-based care for as long as they want?
The child must use his or her energy on what brings them joy (2). Meetings and conversations with health professionals to establish an understanding of what experiences we wanted our daughter to have of the health system took a lot of energy. We worked hard to prevent her expending her strength on unnecessary encounters with healthcare personnel and spending time in hospitals.. As we found it was largely up to us to decide on the choice of treatment, and to obtain greater clarity regarding treatment options, we contacted oncologists in the USA who gave sound advice. We did not feel good about this. In the palliative phase, as parents, our confidence lay primarily with local doctors, the GP and the palliative care physician in our municipality as well as paediatricians at the nearest children's ward.
The question we have asked ourselves is: Do healthcare professionals prioritise other children's quality of life and desire to live in their local community? Do they dare to trust that local expertise can ease the everyday lives of terminally ill children and their families? Do all parents receive the following message from the local palliative specialist early in the disease trajectory: 'We are good at home-based care in our municipality – trust us, if and when that time comes!' Must all children who walk in the shadow of death have parents who fight like lions to ensure home-based care for as long as they wish, and that all hospitalisations and testing are made as simple as possible?