I was 10 years old when I made a return visit to the neonatal intensive care unit where I was treated after my premature birth. I stared at the tiny occupants in the incubators, seemingly unaware of their sterile, plastic, isolated worlds, and struggled to conceptualise the link between their current situation and the cause of my disability. This visit also raised a question about what the moral obligations of health services are for these children later in life.
In the decade after my birth and the more than two decades since, there have been major developments in the care of babies subject to prematurity. The babies I met that day are now grown up. For some of them, their unscheduled arrival will be an interesting story to tell and for others that time will have left its mark, as it did with me.
I have cerebral palsy (CP), a condition that arises from damage to the infant brain; it causes problems with movement, posture, walking and coordination. Although not exclusively caused by prematurity, it is a common co-morbidity of it. The condition affects 1 in 400 children born in the UK with a spectrum of effects ranging from mild balance problems to profound physical and learning disabilities. All individuals with CP will require a level of support across the entire life course.
Advances in medical sciences have led to an increased capacity to sustain biological life. This has led to many, fiercely argued, debates on the ethics of sustaining life artificially, the resulting quality of life for those who survive with impairments and even the cost and funding of the treatment itself and of future care that may be needed.
In 2004 the case of Charlotte Wyatt, born three months prematurely, hit the headlines. After many months of aggressive medical intervention doctors treating Charlotte believed her situation to be hopeless and that subjecting her to further heroic measures would not be in her interest, as her level of impairment was thought to be such that her quality of life was negligible. Her parents were opposed to the medical decision, wanting to give their daughter every chance to live. The judge in the case ruled in support of her doctors. However, despite their prognosis Charlotte survived and eventually the legal restrictions preventing her resuscitation were lifted. Charlotte steadily improved until she eventually left hospital, however the support she required was so intense as to result in her needing foster care.
Similarly the case of Baby RB, born with a severe case of spinal muscular atrophy, became controversial when his parents were on opposing sides in their analysis of his subjective quality of life. However, his father removed his objection and agreed that life sustaining treatment could be discontinued. Last month we saw outrage in the press regarding the withdrawal of life support from a severely ill baby. Many journalists reacted with incredulity to learn that the judge in question was unmarried with no children. To them this meant that she was ill-equipped and unqualified to make the ruling. These high profile cases have raised awareness of social, ethical and moral issues. We live in a society that is reluctant to give up. It has become so accustomed to medical intervention being positive that it struggles to comprehend that taking no action may actually be in the best interests of the patient. Perhaps it is life-course that is at the root of some of the issues and as the sportswriter Frank Duford said in relation to his daughter’s death from Cystic Fibrosis, “Adults die with accomplishments and children die with dreams.” It is not just the child’s dreams that are lost, it is the hopes and expectations of their parents that die along with them.
Those treating very premature babies sometimes seem to be working only in the moment. As a result many of these children will survive the initial crisis but develop long-standing problems. It could be argued that many of the individuals who protest about the morality of withdrawing life-sustaining treatment are doing so for reasons other than the quality of life of the child involved, whether as parents fighting to save the life of a beloved child no matter the consequences, or as people with a particular belief system about the sanctity of life. Currently, there is a reluctance to think long-term and support is weighted heavily in the child’s early years with a decreasing level of support available as individuals age. My parents certainly experienced this phenomenon and my mother in particular has pointed out several times in my adult life that the cute little babies grow up and nobody seems to feel the same impetus to address their needs.
I know on some level that my parents wish that I had died, not for them, but for me. I have come to believe that the NHS should retain a moral obligation for life for these children to ensure quality of life. In order for this to be achieved a shift in society’s attitudes and expectations needs to occur. If you spend vast amounts of money keeping someone alive as a baby and there is little funding for care when they reach adulthood, what use is that to that person, and what does it say about the society we live in that this is allowed to happen?
The last 5 years have seen sweeping reforms to the social care and benefits system, care costs are increasing and budgets to provide services are reducing in very real terms. The forthcoming closure of the Independent Living Fund, that supports individuals with the highest level of social care need to live in the community, has left many individuals fearing for their independence. They worry that the community where they have lived within and felt engaged and connected to will in effect become a pseudo institution. If society wants to preserve life at all cost it has to become cognisant of the wider implications and consider quality and dignity of life, all of which of course will inevitably have costs whether social or financial to all of us.
I think often of the military covenant whereby those who serve in the military are prepared to lay down their lives on the understanding that they will be assisted to live the best possible quality of life should they be injured. Whilst some in the military have had to fight to ensure this covenant is upheld, particularly with regards to care for those with mental health problems and Post Traumatic Stress Disorder, it makes sense to me that practitioners should begin to think along these lines, if they are taking heroic measures to save my life, then they have a responsibility to ensure that they seek to maintain its quality for my whole life.
About the author: Anika studied Crime Deviance and Society at Staffordshire University then went on to complete a Masters in Social and Cultural Theory. She identifies herself as politicised and is committed to questioning social reactions to disability, the segregation and the seemingly relentless need to make the uncooperative body conform the expectation of the majority.
Since graduating from university, she has written about various aspects of disability and illness. Anika writes regular blog pieces about the lighter side of life with a disability. She also writes more serious articles and papers for a variety of academic journals.