Palace of Care – Best Laid Plans

Photo by Pedro Miranda on Unsplash

Advance Care Planning (ACP) is recommended for everyone. It allows people to convey what is important to them. It can guide loved ones and health professionals as to what your wishes are in the case of you becoming incapable of expressing yourself. Such a situation is possible for anyone and thus it is recommended to be completed whilst you are well. Although it can be hard to imagine how you would feel or act in the event of severe illness or disability. ACP allows people to take some control of the end of their lives. This is what I want, this is want I don’t want. This is who I want around me. This is how I define what is quality of life for me. This is where I draw the line. It can be a confronting and difficult exercise to complete with your loved ones but it maybe a crucial method to communicate what you really want.

My patient had been diagnosed with MND (Motor Neurone Disease) over a year ago, and after attending the second clinic appointment they had introduced him to ACP. He read through the booklet with his wife, and it appealed to his organised nature. He always had a monthly, yearly and five-yearly plan in action. The doctor had said that most people would die of MND 18 months after diagnosis. This can mean time is running out, and this is not aided by diagnostic delay. All other illness have to be excluded before the diagnosis of MND is confirmed, for most people it is still a death sentence.

He knew that his time was short and he wanted to do right by his wife and his four sons, the ones that he loved the most. He considered deeply what he would want to happen in the event of him requiring full-time care. It would be hard for him, but he had to do the right thing for his family. If he needed that level of care he did not want them struggling to provide it. He wanted his wife to continue working as after he had died the family would still need her income. He did not want her job becoming endangered. If he was so unwell that he needed 24 hour care he would go into residential care. He did not want his wife and children having to look after him, he did not want to affect their work or school lives. He wrote down clearly that he would make the sacrifice and would go into care. Better than have his family distressed, the youngest boys had barely become teenagers. He did not want them to have to wipe his bottom.

Over the course of the year his functional status continued to fluctuate wildly but was overall trending downward. His physical body was deeply affected and his brain soon followed. He became emotionally labile, and became disinhibited, both evidence of the front-temporal dementia that can occur in MND. The brain areas where insight, judgement and emotional control originate. He was becoming a different man, needing a lot of care to be provided to him by his family. They struggled to cope at home with him. More and more demands were made o of his wife and children, and they were becoming distressed. They were burning out, and the family was on the verge of collapse. An urgent admission to hospice was arranged.

He calmed down when he arrived at the hospice, and his family were able to have more rest at home in between visits. The staff did their assessments and the consensus opinion was that his care needs were great enough to warrant hospital level care. This was discussed during a family meeting with our patient and his family. He did not take the news well, he said that he wanted to go home as soon as possible. His wife did not want to upset him any further and agreed to take him home as soon as possible. His best laid plans that he had made when he was cognitively intact, he refused to follow when he was unwell, and he wanted to go home.

They went home and it did not end well. He started having falls, and sustained a severe injury to his tongue leading to significant blood loss. He was admitted to the hospital to control the bleeding, and his condition deteriorated further. It was a distressing time for our patient and his family. He died in hospital after ten tumultuous days. His family’s devastation was tinged with relief.

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