Palace of Care – Limited time, big changes

Photo by Skyler Gerald on Unsplash

We had been expecting to admit our patient for a number of days. In the past week she had been troubled by bad pain in her back. We knew that the cancer had spread there already. It hurt her to walk, and she had peed her pants on the way to the toilet. She could not make it in time because the pain of walking held her up.

On admission some medications were changed and by the next morning, they had worked really well. She had slept well for the first time all week, her pain was well controlled, and she was happy to be away from home. Home was full of family, and it was hectic, three generations of family living in the same household, with up to 20 people around her at any time. It was easy to get lost in her own home. She appreciated the opportunity to rest.

Everything we told her was written in her notebook, she wrote down the conversations we had, the medication changes we had made. The notebook was where she made her plans, for everything. She knew that she was unwell, and had already taken it upon herself to plan her funeral. She had always done things differently in her life, and that was not going to change after death. She was planning to break from her usual cultural traditions, and was planning an European style funeral. She would not be going to the traditional place of mourning of her people. She was going to do things in her own way. We talked about Frank Sinatra’s song “My Way.” She jotted it down as something that she wanted to play at her funeral.

It was the happiest response to an advance care planning booklet that our staff had ever seen. She grasped the document with joy in her eyes, Oh boy a whole to fill out, I can’t wait. She filled it out with gusto, easily, as a lot of the answers to the prompts had already filled her notebook. She was glad to be asked what was important to her, and to allow her plans to be spelled out in plain English was a relief for her. All of this was done in the first three days of her admission.

The fourth day was different. She had been troubled by worsening of her pain, what had been well-controlled had slipped out of control. Medications were adjusted but she became sleepy and less responsive. She started having trouble swallowing her medications and was changed to an infusion pump, with good effect. It looked like she was about to die, we warned the family, and they gathered together.

After the weekend she had improved, but was not her usual self. She remembered our names, but was not as clear in her thinking. If you hadn’t met her before you would think that she was doing well as she talked clearly. The striking difference was she was not able to listen attentively anymore, her notebook had been put away, and she wasn’t writing things down anymore. Not her usual self at all. She was keen to go home now, she missed all her family, and wanted to be with the crowd. Again different to the lady that we had met barely a week ago.

She did go back home on leave and had a good time with her family, she came back happy, and exhausted. We started planning for her discharge home as the trial home leave had gone well. Equipment was being arranged, the family was being trained to be able to give her injections for symptom relief. She really looked forward to spending more time at home.

The following morning she was seen on the ward round and was tired but relatively stable. Just mere hours later she had crashed, breathing heavily with low oxygen saturations of 52% on air. An acute event had occurred, possibly a clot to her lungs. She had become semi-comatose and was not responding to voice. So different to the lady we had met in the morning, it looked like she was nearing the end of her life again.

On the next morning she was breathing rapidly in a distressed fashion, her eyes were open but were staring vacantly at the ceiling. We were surprised when she nodded in response to our greetings. We told her that things had changed for the worse quickly. She nodded. I told her that her time was short, another nod. We would look after her and get her through this. Nod. We would look after her family as well, [Nod, nod.] We left the room to adjust her medications, trying to make her more comfortable.

I returned 30 minutes later and played a song for her using my smartphone as I pretended to check her pulse:

And now, the end is near
And so I face the final curtain…

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