“Are you going to help me, or are you going to keep blocking me?”
As health care practitioners we are only involved in each case briefly. Patients and families have to be able to live with the decisions that they make. The best thing we can do is allow them to control their destiny.
She (a patient} had spent weeks on our ward with pain in her upper right abdomen. This was caused by metastatic cancer deposits in her liver. Previously the metastases had caused blockage of bile ducts leading to painful jaundice, this had been treated with insertion of drains. She talked with fondness about her children, but when it came to discussing her grandchildren that was when her eyes sparkled. It was good to see her comfortable and talking in a happy fashion. A pleasing contrast to when she had first been admitted, doubled over and grimacing in pain, despite having taken maximal pain relief at home. It had been good to ease her suffering with the care that we provided.
We had begun talking about discharge planning, preparing for her return home when she took a turn for the worse. Worsening liver area pain and shaking with fever suggestive of a bile duct blockage with infection – Acute cholangitis. Antibiotics were started, but there was no improvement in her overall condition. She asked if she could go to hospital, like she had done previously.
Drawing upon the best of my skills and knowledge my opinion was that the hospital would not be able to do much more for her. This was likely a life-ending event and the best that could be done would be to make her as comfortable as possible, which is what hospice is best at doing. I tried to convince her not to go, as I truly believed it would cause her more stress, as well as disappointment.
“No, you don’t understand. I need to do this, I need to try to stay alive as long as I can. I’d try anything for my family. I really need to go, are you going to help me, or are you going to keep blocking me?”
I realised that she was right, that I had been obstructing what she really wanted, what she really needed to do. I quickly made arrangements for her to be transferred to hospital. I promised that her bed would be held for her, that she could come back to it.
She stayed in hospital overnight and she had scans performed which confirmed the bile duct blockage. They explained to her that were not able to add anything to her treatment and that she would not recover from this, that it would end her life.
I met her on her return and I admit that the words, “I told you so,” crossed my mind for only a few seconds, but disappeared when I looked at her face. She expressed disappointment, but appeared to be at peace. There was no sign of the anger that had preceded her trip to hospital, there was just acceptance. She felt that she had tried everything she could to stay with her beloved family. She felt sad to be leaving them, but was able to let go.
It was relatively easy to keep her comfortable in her final days, as her family maintained their vigil.
Lesson learnt:
As health care practitioners we are only involved in each case briefly, patients and families have to be able to live with the decisions that they have made. These decisions may have long reaching impacts that may affect more than one generation. I really was trying to act in her best interests but she showed me that I was actually blocking her from what she really needed to do. The best thing that I could do was to get out of her way, and allow her to control her own destiny.
Credit: Palliverse