Working in the community palliative care team I don’t meet in person most of the patients that are under our team’s care. I often have to provide advice for people that I have never met and have to count on my staff members’ assessments as the basis of knowledge of each patient. This is how our specialist support is provided from a distance, this allows me to have about 380 patients under my consultant remote control supervision at any time. Often I will provide advice which will be conveyed to the patient and their family doctor to be actioned.
This is the story of someone I never actually met but whom I provided advice on, an elderly Jewish lady who was a Holocaust survivor. I never found out which concentration camp she had lived through but somehow she had stayed alive when many had not. When she was young all control of her life had been taken away from her. Separated from her family whom she never saw again, made to endure hellish conditions, tattooed and emotionally scarred for life, she some how made it through her ordeal. She moved to New Zealand, married a local man, had children and grand-children and a rich and rewarding family life.
Recently her health had taken a turn for the worse and she was diagnosed with metastatic cancer with spread to her brain, causing headaches, and seizures. Despite having had radiotherapy treatment and high dose corticosteroid treatment her symptoms worsened. She was still clear in her thinking but was at risk of this deteriorating soon.
I felt that the right thing to do for this lady was to try allow her to take control of her situation. Control of her own life had been stolen from her by the Nazi regime at the start of her adult life. Now at the end of her life I wanted to give her control of the end of her life. An opportunity to rebalance karma.
Through her hospice nurse I conveyed that she was dying and that she could choose between two options:
- To continue on with her corticosteroid treatment, which eventually would stop working, and she might live longer, but might develop more pain and suffering.
- The other option was to wean down and withdraw her treatments, this would mean that she would worsen more quickly and we would need to cover her symptoms with medications. Nature would take its course and she would die faster.
She considered her options with her family members, who were all supportive of whatever she wanted. She was glad to be given the option to choose her own path, something that she had been robbed off at the start of her life, to be able to control her own destiny. She chose to come off the corticosteroids and we proactively kept her comfortable with increasing levels of pain and seizure control medications. She lost consciousness and died a few days later, at home in the presence of those she loved the most.
It is important to pull back and take a wide-angle view of each situation, to evaluate the big picture. What are we actually doing here, are we prolonging living or are we actually prolonging dying?
Medical treatments are an attempt to control Nature, but this can be a force far too powerful to be controlled. Have you tried stopping a hurricane lately? Well illness can blow through a person’s life leaving behind a swathe of destruction and chaos.
It feels good to provide people options to choose from at the end of their lives, to allow them to exert control of their situation.
This was, in my view, an important and insightful post that sees a person holistically in the context of their whole life, asking what’s my role and what’s right for my patient – and giving choice in recognition of where the answers lead.
Power sharing – what an awesome therapeutic modality !
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