In That Case

Bioethical Inquiry (2011) 8:105–106 DOI 10.1007/s11673-010-9282-y In That Case Bill Lukin Received: 25 November 2010 / Accepted: 29 November 2010 / Published online: 4 January 2011 # Springer Science+Business Media B.V. 2010 Call for Responses The case outlined below will be the basis for the In That Case section in the next issue of the Journal of Bioethical Inquiry (JBI). We invite interested readers to provide responses to the case for possible publication. Responses should be 500–700 words, and should be submitted as soon as possible after publication of this issue. The editors will select the responses to be published in the next issue of the JBI, and reserve the right to edit contributions to avoid repetition. Editorial changes will be cleared with authors before going to press. Responses should be submitted on Editorial Manager. Taking the Hard Road After a swallow assessment, Miss K, a 35 year old female with Rett syndrome who weighed 23 kg had been referred for insertion of a percutaneous enterogastrostomy tube (PEG). Rett syndrome is a congenital neuro-developmental disorder that manifests as failure of normal neurological development and then regression after the age of 18 months. Miss K had never walked or talked. She was grossly underweight B. Lukin (*) The Royal Brisbane and Women’s Hospital, Brisbane, Queensland, Australia e-mail: bill_lukin@health.qld.gov.au and suffered regular seizures. She was able to make eye contact but there was no other purposeful movement except to react to pain. She was due to see the gastro-enterologist in the next week. A long term resident of a local facility, Ms K had recently lost weight and had a very poor oral intake. In the interim, a naso-gastric tube had been inserted for supplemental feeding but this was causing vomiting as Miss K’s stomach was not able to cope with the volume delivered. It was also obvious that the tube was causing pain to her nose as she was grimacing and had pulled it out on two occasions. The nasogastric tube was difficult to replace and caused Miss K some distress. I am an Emergency Physician and was called to the sub-acute area of our emergency department on a Friday evening by nursing staff who requested help in re-inserting a naso-gastric tube into Miss K. She was accompanied by her mother who was her next of kin. In a wide ranging discussion about Miss K’s care in general, a discussion ensued of the benefits and risks of proceeding with the PEG that Miss K had been scheduled to receive the following week. Miss K was happy to eat small amounts of chocolate mousse but this clearly presented an aspiration risk and would not meet her nutritional requirements. It was also apparent that Miss K would not tolerate the nasogastric tube. I came to the opinion that a PEG was unlikely to prolong the life of this individual in any meaningful way and that there had been no discussion of the pros and cons of this decision with her mother. 106 In the course of my conversation with Miss K’s mother she revealed she was unaware she could object to the insertion of the PEG into her daughter. Moreover, she had never had discussions of this nature about her daughter’s care before, despite Miss K living in supportive care since the age of four. I did not push her for a decision but stated that we would replace the naso-gastric tube to give her some time to explore the options of withdrawing artificial feeding for Miss K with her family. Miss K’s mother came to the opinion that artificial feeding was not in the best interests of her daughter. She decided not to proceed with the PEG and to cease nasogastric feeding altogether. She agreed and understood there was risk to her daughter from continuing with normal eating but recognised this was balanced by the fact that eating chocolate mousse was one of the few pleasures her daughter (who had a mental age of a newborn) enjoyed. She accepted that normal eating would expose her daughter to the risk of aspiration and that continued poor nutritional input would likely result in her death within a month or two, depending on how much food she was able to take naturally. She faced opposition from staff at the care facility and from within her family in relation to her decision. I met with her again on two occasions at the care facility to give her the opportunity to ask further questions and provide support for her and her husband. At those times she expressed that she was very firm in her opinion and was happy with the decision she had made. Palliative care input was sought and received at the facility to ensure Miss K had a comfortable death. Miss K died in the presence of her family in the care facility about a month later. The patient’s mother was extremely grateful to my team and I for the input we had given and asked us to come to the funeral. Subsequently, Miss K’s mother revealed that prior to my discussions with her she had not for a moment considered not proceeding with artificial feeding. She Bioethical Inquiry (2011) 8:105–106 was unable to articulate why this was the case but did admit that her first thought was that it may have been illegal not to provide life sustaining measures. Yet, she had previously made clear to the care facility that in the event of a cardiac arrest she did not want her daughter resuscitated. This suggests she had gone some way toward thinking about the future but had never been actively encouraged to make decisions. Miss K’s mother stated that a large part of her decision was based on her interpretation of her daughters’ wishes. She thought that her daughter had given up and no longer wanted to live. The fact that Miss K was able to pull out the naso-gastric tube surprised her mother as she had very little purposeful movement of her limbs and she took this as evidence of her daughters desire not to have the tube. Her son (Miss K’s brother) did not agree with her decision and has had some difficulty coming to terms with the outcome. He has yet to visit her grave some 2 years later. We conjectured that this may well be the case because his earliest memories are of crawling around on the floor with her as she never learned to walk. She remembers him being protective of his big sister when young and very careful not to push or hurt her even as a toddler. In the same way, some of the opposition to her decision from staff at the care facility may have come from the fact that they had looked after her for a very long time and no doubt they looked on her as family. In addition, they spend a lot of time as disability advocates and naturally have to take positions centred around that role. I became aware that some of the staff at the centre viewed us as uncaring and saw the discussions that I initiated and pursued as forcing the decision on the Miss K’s mother. My personal reflection on the case is that for everyone involved, except the patient, the easier path would have been to proceed with the PEG.