“Experiencing the world of the inpatient was for us, the inpatient family, like landing on Mars”, so writes a mother on p 2022 describing her and her husband's perception of the 2-year journey of her young, chronically ill daughter through the modern medical system—a journey that ended tragically in death. When a child is born prematurely or with a serious medical condition, or falls ill with a serious disease, parents are rapidly thrown into a turmoil of shock, anxiety, and eagerness to do the best they can for their child. Hospitals become places of hope. Doctors and nurses become helpers and companions in the fight against disease and death. Too often, however, we fail in these compassionate roles. In reality, hospitals can be bewildering and frightening places to children and also to their parents and healthy siblings. Medical care can be messy, is often painful, and the outcome may be uncertain. Parents may suddenly have to hand over the responsibility of care for their children to staff they hardly know. They become helpless bystanders. Witnessing the distress of one's sick child is one of the hardest situations for parents to be in. Distress is often caused by pain, and pain recognition can be difficult in young children. In routine practice, pain relief is still not always managed in the best possible way. Repeated necessary procedures, such as venepuncture, frequently—despite the use of local anaesthetic—lead to anticipatory fear. Doctors and nurses will strive to do their best to minimise distress but are often ill-equipped or too busy to provide the level of explanation and emotional support needed by the child and the whole family. Success of new medical interventions is measured by the numbers of patients who survive or the numbers of days those patients stay in hospital. Only rarely are quality of life or the emotional wellbeing of children, let alone their immediate family, in hospital or after discharge, taken into account. “22 children with end-stage cardiomyopathy … were supported by a mechanical assist device as a bridge to first heart transplantation, with a 77% survival rate to hospital discharge”, so the main result of a retrospective study reported in this week's issue is described (p 1967). Such an endpoint is vital if we are to understand the value of this device. But the stark reality of the necessary everyday medical care for these children and their families' anxiety, hope, and grief is hidden by these numbers. This is one of the most serious and perplexing failures of modern medicine. In a few hospitals the specialty of transplantation, like oncology, has been at the forefront of giving special support to patients and their families beyond immediate medical care. Transplant coordinators or oncology liaison officers, especially in tertiary paediatric settings, act as a link between the medical team involved in acute care and the family, and often guide a family's path through the medical system and beyond throughout the patient's life. Many have had a past background as a senior nurse and have now become a patient's and a family's advocate, adviser, helper, and friend giving practical and emotional support in and out of hospital. In its 10-year plan for the National Health Service, published in 2000, the UK Government recognised the need to make its health-care system more patient-centred and family-friendly. It drew up a plan for a Patient Advocacy and Liaison Service (PALS) in every Trust, a move strongly supported by Ian Kennedy, who chaired the inquiry into child deaths at the Bristol Royal Infirmary. The first so-called pathfinder PALS were set up in 2001. Over 500 Trusts now have these services; on average they employ 2·5 full-time staff who provide support, education, and an open ear for any concerns and problems. But this scheme is only the first step to the wider use of patient liaison personnel within a multidisciplinary team. 2·3 people for a whole Trust are simply inadequate. Every single ward that has responsibility for seriously ill patients—children and adults—should have at least two patient or family liaison officers to assist families. With this kind of support, perhaps stories like Michaela's and her parents' will belong to the dark ages of medicine—a time in which, shamefully, it still seems we are living.
Read full abstract