Palace of Care – The returned tackle box

box.jpgOn the desk I was surprised to see the returned tackle box. This usually happens when a patient doesn’t require subcutaneous medications anymore, or else when a death has occurred. There would be a missing name on our “patients to be discussed” list tomorrow, one that had been on the list for most of the past eight months.

She had been one of our patients for over a year. A year in which she had suffered from bad physical pain, but much worse existential pain. Painful bony metastases were present but no major organ involvement meant that she lived a long time with pain. The medications that we advised for the pain were never fully effective but had major side effects. She wouldn’t let anyone in to deal with her non-physical pain, despite numerous attempts by various team members. Trapped in a miserable situation that she felt was going on forever, her only escape was the quiet comfort of medication toxicity-induced delirium.

After she was diagnosed 17 months ago, she had taken to bed. Despite being independently mobile, she then successfully and steadfastly chose to become bed-bound. Looking after her at home was three full-time jobs in one for her husband. Being mostly the sole witness to such persistent suffering, created great stress and certainly took a toll on him. She wanted to stay at home, and he did his best and granted her wish for many, many months. Both of them became more and more miserable.

She was admitted a number of times last year, mostly to deal with medication toxicity. Many non-pharmacological avenues were explored, but only had temporary effects, due to a pervasive lack of motivation. Things continued to progress and the pains became worse, an interventional nerve block was arranged, which provided a brief period of respite from suffering. Pain was controlled well for some weeks. Her mind was clear, but strongly developed new habits persisted and self-imposed bedrest continued. Residential care was recommended many times during these admissions, as we queried the sustainability of the home care situation. Don’t even go there! – was the constant refrain which ended many “where to from here?” conversations. Back home they went to keep each other company in their shared misery.

She was transferred to our inpatient unit from hospital for her final admission following a few close calls with death. Her husband appeared haggard and had lost a lot of weight. She improved under our care and again the subject of discharge planning was broached, and again the recommendation that residential care be the destination was given. This time there was a different answer – yes – we can’t do it anymore.

In the days following the decision a lightness that had never been seen before was being shared by the couple. The last time I saw them both we talked in a relaxed manner and shared a few laughs together before we said our goodbyes.

Over the next few months I was glad to hear that she was happy in the place that she had chosen to live out her days. Her husband was reported to be doing much better as well, as she was cared for beautifully.

Rest in peace, safe journey, thank you for the laughs we shared.

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