Life is so often unpredictable. It is natural for all human beings to wish to live as long as possible and to have meaning in life. However, as our life situation changes, our ability to achieve this declines. It is one thing to enjoy life with your friends and family when one’s energy level is high, and everything is going well. It is quite another thing to enjoy life even when in extreme pain, unable to physically do anything, and physically or mentally be deteriorating. The ability to speak, see, eat, move our limbs are all privileges that can be taken away from us at any time. Watching a loved one in such a condition is perhaps one of the most difficult experiences of all times and one cannot stop yourself from asking ‘is this individual living a meaningful life?’.

Patient X, a six year old boy who was involved in a motor vehicle accident late July’19. He sustained a severe traumatic brain injury (TBI) and was transported via helicopter from Hermanus to Red Cross Hospital where a craniotomy and tracheostomy was performed. Patient X was intubated for 1 month and a Percutaneous endoscopic gastrostomy (PEG) tube was inserted for feeding as he is unable to swallow. As a result of the TBI, patient X is now blind and also lost his ability to speak. He now presents with global spasticity throughout his body resulting in the inability to actively move his upper and lower limbs. Before the accident, he was a happy and healthy six year old excited and ready to experience the life he has been given with friends and family. I have been treating patient X at Groote Schuur hospital as part of his rehab process before going to St Josephs home. Treatment consists of educating and teaching the mother how to passive movements (due to global spasticity), application of upper and lower limb splints, positioning in his cot and buggy as well as transfers to his buggy. His mother, a mom of three children, sits next to his cot every day and does not leave his side. The mom raised her concerns to me surrounding discharge regarding that their home is not suitable for him. They live in an informal setting in the backyard of someone’s house. They do not have their own transport to get to future doctor and therapy appointments.

A TBI is defined as, “…an acquired injury to the brain caused by and external physical force, resulting in a total or partial functional disability or psychosocial impairment, or both, that adversely affects a child’s educational performance. The term applies to open or closed head injuries resulting in impairments in one or more areas, such as cognition; language; memory; attention… (Levin, 2004). A severe TBI is characterized by a Glasgow Coma Scale of 3 to 8 out of 15, loss of consciousness of many days to years and post traumatic amnesia of weeks to months (Du Toit, Coetzee, & Beeton, 2013). When children sustain a severe TBI, they present with emotional, cognitive, physical and behavioral problems which impair their functioning significantly. These impairments my last for years or may be permanent. In patient X’s case, his damage is permanent. Therefore, when children with severe TBI are discharged home from hospital, they continue to need supervision and assistance with the type of tasks that typically developing children use to gain independence as they grow older. Parents, in most cases the mothers, become the primary caregivers. Often the families and mothers neglect their own needs which contributes to their burden of care and deterioration in their well-being (Du Toit, Coetzee, & Beeton, 2013).

Seeing the patient and his mother has made me think and question what a ‘meaningful life’ is. Patient X has no chance of full recovery and will be dependent on others for the rest of his life. Not only does this affect him, but his whole family. His mother, who is now focusing all her energy on him, is missing out on milestones and celebrations of her other two children. For the past 3 months, and potentially another 3 months she will be spending her time in a hospital ward keeping an eye on her beloved son. This has been ongoing for almost 2 months now and one cannot stop yourself from admiring the love between mother and son, despite the circumstances. Saying this, every time I leave the patient and his mom, I cannot stop myself from thinking whether the medical procedures taken at the time of the accident and the life support given at the time was the ‘best’ decision.  Patient X is not seen as a priority patient on my patient list everyday and I have been told by my clinician that I can see him whenever I want and as much as I deem necessary. I found myself in a conflicting situation with as for 3 consecutive days, I did not have the ‘time’ to see the patient. Saying this in retrospect made me reflect on what my thought process was skipping this patient and deeming other patients more important.

The debate regarding meaningful life is ongoing as each individual will have a personalized view thereof. Baumeister (1991) concluded that the quest for a meaningful life can be understood in terms of four main needs for meaning. These four pillars guide how people try to make sense of their lives. The first need is purpose – the essence of this need is that present events draw meaning from their connection with future events. The second need is values, which can lend a sense of goodness or positivity to life and can justify certain courses of action. The third need is for a sense of efficacy. This is the belief that one can make a difference. The fourth and last need is for a basis of self-worth (Snyder & Lopez, 2002).

In today’s society, the meaning of life, or quality of life, is often determined by physical and cognitive ability – the ability to do things independently. To determine the quality of life of a six year old child also becomes difficult. According to Campbell &McHaffie (1995), pediatricians define quality of life for a child to be concerned about the child’s capacity for future health, development and well-being, and about the potential ability to reciprocate human relationships.

Through reflecting on this matter and according to the 4 pillars as well as pediatricians inclusion factors for a child to live a quality of life, I do not think that patient X has a high quality of life or the prospect of having one is slim. Saying this, it is not a  valid reason or excuse to skip a patient or simply to check in with the mother. Patient X has the right and deserves the same treatment as any other patient, despite his current or future quality of life. I find myself questioning my actions and with disbelief in what I did thinking it was acceptable to skip patients when I easily could have made the time. In retrospect I find myself thinking about the question that I’ve asked myself constantly when thinking about this patient. I realize I did not only consider the patient, but rather the mother, father and siblings of patient X and the physical and emotional straint it is placing on them now, as well as far into the future.

References

Campbell, A., & Mchaffie, H. (1995). Prolonging life and allowing death: infants. Journal of medical ethics, 21, 339-344.

Du Toit, C., Coetzee, Z., & Beeton, H. (2013). mothers’ experiences of caring for a child with severe brain injury in a disadvantaged community in the cape Flats. South African Journal od Occupational Therapy, 43(2).

Levin, K. (2004). Paediatric traumatic brain injury in South Africa: some thoughts and considerations. Disability & Rehabilitation, 26(5), 306-314.

Snyder, C., & Lopez, S. (2002). HANDBOOK OF POSITIVE PSYCHOLOGY.Oxford University Press.