Palace of Care – Welcome to Hospice – Part 2

Photo by Brittani Burns on Unsplash

She had spent her whole life looking like her sister. They were always compared to each other. The older one is taller, the younger one can sing better, the older one can run faster, the younger one is better at Math. Despite all of the comparisons the two sisters had always gotten along fine. Their relationship had started nine months before they were born, they hadn’t just been room-mates growing up, they had actually been womb-mates right from the start. Identical twins who looked the same on the outside but were actually different people. Their life paths had followed each other closely before wildly diverging at the age of 26. The older one became unwell two years ago, the younger one carried on with her life.

The family had been scared of hospice, they didn’t really know what it was all about, but most people associated it with death and dying. Not something that is usually discussed in the Island culture. They resisted the hospital palliative care nurse’s attempts to send them over. What changed the older one’s mind was another patient on the same ward. A Maori lady who had been in hospice before. She had told the family what it was like, that it wasn’t a scary place at all, that on a previous admission, that they had been kind and were willing to do things in the traditional way. This lady was actually going to be heading over to the hospice that afternoon. She convinced the older one and the family that going to hospice to control symptoms would be a good thing.

In the ambulance on the way there she was nervous, and didn’t know quite what to expect at the hospice. The nurses and doctor who admitted were friendly, but what was really nice was that the Maori lady that she had met in hospital came to welcome her to the hospice too. That really made her feel more at ease to see a familiar face. She encouraged her to be honest with the staff about how bad her pain and other symptoms were. The older one was thus able to tell them that, the pain relief hadn’t really worked well, and she wasn’t able to sleep because she’d wake up in the early hours of the morning in pain. She had found the nights in hospital to be so long, staring at the ceiling, feeling exhausted but unable to sleep. The sounds of a busy medical ward all around her, the call bells, the trolleys being pushed around, the murmuring of the night staff at their table down the corridor. The linoleum floors carried sounds all the way down the corridor. She hadn’t slept well for a number of nights, and calling for pain relief, it would take a while before they could bring any, and then another thirty minutes until it started working.  She hoped that things would be better at the hospice. She wondered where her hospital friend was, and she didn’t see her again after her first visit.

The doctor wanted to try changing the medications to see if that would help her pain and to allow her to sleep better. It didn’t work right away, but even on the first night, her pain wasn’t as bad and she was able to sleep through more of the night. Then nausea developed and they had to adjust her medications again. After three days, she was actually comfortable and had even slept through the whole night. She knew that she was really unwell, and had found going back to hospital the most stressful of times. They had told her that her bone marrow was not working, that it couldn’t produce blood cells any more. That was why she felt so tired. She had needed many transfusions and they were now having trouble finding good veins, even to take blood tests let alone give her anything. 

She was feeling worse and the doctors told her that her condition was worsening. Everyday she felt more tired, but she had to say that she was feeling better, as she didn’t want to upset her mother. The hospice doctors understood this, and were trying to allow her to speak for herself, to make her own decisions. She knew that there was nothing that they could do for her in hospital, she was tired and just wanted to rest, she did not want to go back to hospital. The doctors could understand this and  asked if she wanted them to tell her mother and father. “Yes, please, I’ve been trying to tell them this for weeks. I’m so tired, and I don’t want any more needles and tests. I’ve had enough.”

As her condition worsened it was agreed that she would not go back to hospital, that no further blood tests would be done. That the doctors would care for her in the hospice. Her parents asked if they could take her home, and arrangements were made for this to happen. They were advised that if there were any problems to call hospice anytime of the day or night.

Unfortunately a few days later her condition worsened. Her family didn’t call the hospice, and called an ambulance instead. The older one went to hospital and was transfused two units of packed red cells. Barely minutes after her transfusion, she died.

This was the result that the older one hadn’t wanted, and which the hospice staff had tried to prevent. Her family though wanted her to go to hospital, despite many explanations they could not accept that their 28 year old daughter was dying. They needed to try to save her life one last time, otherwise the survivors of her death could not live with themselves. They had to do the right thing for themselves, even though it went against the older one’s true wishes.

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