My intern asked me to see her in Cubicle 4. She had been transferred by ambulance from the nursing home she lived in with a note saying she had been refusing to eat or drink for the last five days. She was 42 years old, had a rare disease affecting mitochondria meaning she could no longer move or talk, but was wide awake and aware of everything around her. Beside the bed sat her husband, who was able to fill me in on the history.
They married years before, when she was well and had no idea that this awful disease was her future. She had been an intelligent and attractive woman, with a career she excelled in and a wide circle of friends. Then the disease had made itself known, in a small way at first but causing increasing disability as time went on. A diagnosis was made, her prognosis bleak. There was no treatment. This disease was irreversible and would lead to her death.
Her husband had managed her at home for as long as he could, but his capacity to care for her was finite. Reluctantly he had to admit her to a nursing home four months before I met her. At that time she was still able to speak, and she told him over and over that she hated living there and that she wanted to die rather than face the already severe but ever increasing disability her disease brought. She made him her Enduring Power of Attorney (EPOA) for health matters and made it clear that he and only he was to decide about health issues for her. She had said that her mother should not be involved in those decisions. The responsibility was to be only his.
I examined her in the Emergency Department cubicle. She was skin and bone. She was unable to move her body or speak, yet was clearly aware from the way her eyes followed the conversation between her husband and me. She was dehydrated, and had some tenderness of her abdomen.
Her husband was clearly distressed by the situation. We talked about what options there were for her care. I suggested that sometimes when people in her situation refuse to eat or drink that it is the only way they can control what is happening to them and that they are seeking release. I asked him if that could be what she was doing. He cried, and said that he thought that was exactly what she was doing. Her eyes followed our conversation, back and forth.
I suggested that one option was to palliate her. I explained that this meant accepting her choice of refusing food and fluid, but making sure we treated any pain she may exhibit and keeping her comfortable in hospital. Another option we discussed was for her to be returned to her home and for the same plan to be followed, with his care being supported by community nurses. She looked at me with what I saw as hope in her eyes.
A third option was to put a needle into her arm and run intravenous fluids to rehydrate her, to investigate her with blood tests and abdominal scans to clarify the cause of her abdominal discomfort, and to treat whatever we found that may need treatment. He cried some more, and said she would hate that, and would prefer to be kept comfortable and allowed to die naturally. Her eyes told me she agreed.
Then he explained that he did not feel he had the authority to make the decision alone. He told me her mother was coming to the hospital, and could I please speak to her about it. Her mother wanted her to live as long as she possible could. She had clashed with him over her care on many occasions. He expected that she would disagree with palliation.
I told him I thought that was why she had made him the sole EPOA. He looked at me blankly and asked if I would speak to her mother when she arrived. She was due in a half an hour.
An hour later I was asked to go back to the cubicle. Sitting beside her husband was an older lady, her mother. I repeated the conversation I had with her husband, again followed closely by my patient’s eyes. I saw the wall between her mother and myself building, word by word. When I finished what I had to say, I suggested that I leave the three of them alone to discuss the way forward.
It didn’t take long. I was called back into the cubicle after ten minutes. Her husband told me that I was to rehydrate her with an intravenous drip, and investigate her as outlined with blood tests and scans. I asked if he was sure, and through tears he told me he had no other choice. Her mother had insisted.
I prepared my equipment for the intravenous drip, and blood tests. When I turned back to the bed, she was looking straight into my eyes. For the first time, they were full of tears. So were mine. I did what I had to do and she went to the ward.
Two weeks later my intern pulled me aside in the corridor. She had followed up on the case. Her husband had finally decided that enough was enough. The investigations and treatment were stopped. She finally died her natural death.
This article written by Mike was featured in Andrew Denton’s book ‘The Damage Done’ which can be obtained from the website www.gogentleaustralia.org.au/the_damage_done