This article was featured in ‘Narratives in Pain, Suffering and Relief’ in the March 2016 issue of Journal of Pain and Palliative Care Pharmacotherapy.
Anguish and acceptance
In this article, the author introduces to us to a young mother of two with metastatic nasopharyngeal cancer, living with severe pain and the indignity of tracheostomy and nasogastric tubes in place.
Unable to speak, when she was brought to the hospice, she wrote: “I do not want to live like this” on a pad for her doctor to read.
An effective analgesic regimen was begun, and she became reasonably comfortable for several months. But then her condition worsened.
In and out of hospice, she managed to send text messages to the hospice doctor who had by then become her friend.
The last month of her life was tough for her. Multiple symptoms, the sadness that she would not be around to see her children grow up, and fear of dying made her sleepless.
Yet, three days before her death, she asked the doctor: “Could you get me a pack of cards, and could you not tell my husband please?”
The author writes about the seven month journey from: “I do not want to live” to: “Can I have a pack of cards?”
She also talks about “the anguish and acceptance,” and ends with satisfaction at the solace that the hospice was able to give the young mother.
Tears and an enriching discussion
As our group read and discussed this story, there were some tears, and also an enriching discussion.
As medical educators, we often speak of the importance of understanding the narrative of our patient’s lives, not just the facts of their medical conditions.
It was both gratifying and enlightening to see how reading a patient’s story together brought home to the group the concepts and principles of palliative care.
The group’s response to the article
Participants noted that the description of hospice as: “a place of solace and peace amidst the turmoil” is thought-provoking.
They observed that even with the burdens of tracheostomy and a nasogastric tubes, this mother still wanted time; she still had hope and felt ‘at home’ in the hospice and in spite of everything, she could smile.
The group discussed how, even though the young mother could not speak, she could express emotions by text messages. She uses her text messages not only to express her sorrow, but also to compliment others and display friendship.
They noted that shift from hopelessness (‘I do not want to live like this’) to some enjoyment of life (‘Can I have a pack of cards?’) is remarkable. ‘Don’t tell my husband’ (when she asked for cards) seems fairly typical. She knew what she wanted, but was concerned – what would others think?
When she said ‘I do not want to live like this’, the group recognised that it was necessary to look for the meaning behind the words. The article author notes that the patient: “fought sleep.” The group recognised that when one is afraid of death, one is afraid to fall asleep.
They admired the fact that despite all her problems, she maintained her independence, and noted her close relationship with her sister – her ‘shadow’ – which the group found very touching.
When acknowledging “we had no answers for her,” the author demonstrated strength, the value of being a good listener, and offering presence and support rather than burdening the patient with answers to questions that may intrinsically have no answers.
The group realised that although there seems to be a dichotomy regarding “anguish and acceptance,” acceptance does not necessarily mean that there was no more suffering.
Group participants concluded that the best place to die is where you feel the most comfortable; and it is not necessarily home. For this patient, it was the hospice.
You can read the complete narrative online in the Journal of Pain and Palliative Care Pharmacotherapy.