Whilst on my paediatric placement I was assessing children with spastic Cerebral Palsy to determine whether botox injections were likely to improve their function. I was also able to assist the Doctors who gave the injections to ensure the optimal part of the muscle bulk was injected. Generally in this placement I found that the parents of these children were willing to making sacrifices to ensure the best for their child, were very tuned in to what health professionals had to say and seemed to have accepted that the disability was permanent.
During my final week at this placement I witnessed an episode where the parent of a child awaiting injections became very angry. The two year old child had been given the local anaesthetic and was waiting in a room with five other children and their parents for it to take affect before having their injection. I did not see what triggered everything, but my supervisor and I heard her yelling and came into the room to find her slamming a chair on the ground swearing at the nurses and saying that she wished her son had died (I later learnt that he had been in a car accident at 11 months of age).
Some of the nurses were able to settle the woman down eventually and she was asked to leave without her son having the injections. Although I was able to avoid involvement it was still a very important moment for me as a strong reminder that people may not be coping with life-changing issues such as the permanent disability of a loved one. The fact that she was the only person I saw expressing their frustration and anger at what has happened to their child certainly does not mean that she was the only parent who was not coping with their situation.
As a result of this situation I expanded my questioning at all appointments to find out directly or indirectly how the child’s family was coping. Although this seems of obvious importance, it is very easy to focus on the child once you feel that the family is coping and happy with how the management of their child is going. In this situation the child had been disabled for 13 months and yet the mother reacted as if she had just understood the position her and her son were in. This also made me consider that new treatment options or changes to health management or even schools and other aspects of life can trigger responses that may be unexpected. I have become more aware of considering the impact certain terms or procedures can have on a person’s understanding of their condition or that of a loved one, which is very important when dealing with families, palliative care and permanently disabled patients in particular.
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That was very insightful. I realised the importance of acceptance when I shadowed the hospice personnel on her home visits.
One of the patient we visited was a 40 year old lady who has had cancer of the neck which was not diagnosed early even though the doctor did all the screening he should have done. As a result, she was very negative towards health workers. She did not want any pain control and did not want any intervention. Until one day the hospice personnel gave her an ultimatum to either go back to the doctor she was seeing or go down to perth. She eventually went back to the doctor who transfered her to one of the perth hospitals where her pain came under control.
That day when we visited was the second visit as after she came back from perth, she said she was doing very well and that it was not necessary for the hospice worker to come for a home visit. The hospice worker decided to "drop by" to see for herself that things were really going alright.
On this visit, the lady was a changed person, she embraced a positive outlook and was obviously living her life to the fullest. She shared that she has come to accept her illness irregardless of how unfair she still thinks it is.
I feel that we have to keep empathy as one of a very important trait because unless we have been in the same situation we can never fully comprehend what our patients are going through. That helps us to put ourselves into their shoes and better tailor our treatments for each unique patient. And as u've mentioned, its especially important in palliative care or a permanent disability.
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