Dignity Wrapped in a Scarf of Gold: A Physician’s Reflection
By Sinéad Donnelly
In medicine and palliative medicine much is written about dying with dignity, about treating someone with dignity, but what do we mean? Harvey Chochinov, who has studied this concept in relation to people who are dying, writes:
“One of the most confounding challenges faced by end-of-life care providers is helping patients achieve or maintain a sense of dignity. Our prior studies of dignity and end-of-life care have shown a strong association between an undermining of dignity and depression, anxiety, desire for death, hopelessness, feeling of being a burden on others, and overall poorer quality of life.
…. patients deem a sense of spiritual peace, relieving burden, and strengthening relationships with loved ones among the most important facets of end-of-life care.. Several studies have linked these issues, including a loss of sense of dignity, loss of meaning, and a sense of being a burden on others, with heightened requests for a hastened death. Clearly, palliative interventions must reach beyond the realm of pain and symptom management to be fully responsive to a broad and complex range of expressed needs.”1
I recognize dignity when I see it, yet I struggle to articulate what dignity might be.
Is it a decision one makes? Is it what others do to you? Is it how you respond to others? How do you die without dignity? Is vomiting as you die an undignified death?
Is being alone when you die an undignified death? Having been invited to write about dignity, I have become very conscious of looking more closely for those occurrences in the hospital. Will I hear it? Will I smell it? Will I contribute to it? Will I detract from it? Does it exist in the hospital?
It is said that “rather than viewing death with dignity as a separate construct, it might be viewed as an interactive process between the dying and their caretakers. Terms such as pride, self respect, quality of life, well being, hope and self esteem all overlap conceptually with the term dignity. While most of these terms refer to internal states of mind, dignity is distinctive in that it also has an external component based on the perception of one’s worthiness of honour and esteem from others”2
Gold is the colour that comes to mind. Her little face without teeth was wrapped in a scarf of deep blue and gold. As we entered the hospital room we saw the hands that tucked the scarf around her face. She smiled with her eyes and her whole face. Her two daughters by her side, watchful, were totally engaged. The photograph of a handsome soldier leaning against an Italian stone building in sunshine, many years ago, rested on the shelf to her right. The photographed face of her great grandchild, a baby, on the hospital wall opposite her bed. There were three vases of lilies - maroon, orange and white. The whole space embodied dignity. I just wanted to linger here, to be a part of this inspiring space. How was it created?
Two days earlier, the night doctors handed over that this ninety one year old lady was dying. She had collapsed at home the previous night and was unconscious. Given her age and the way she presented clinically, it was deemed highly likely that she had had a brain stem stroke. In view of the poor prognosis, nurses had thoughtfully placed the patient in a side room rather than a ward space. The lighting was low. There were three generations of family in the room. The daughter, a nurse, stood closest, leaning in attentively. The air was heavy, full of concern in anticipation of her dying.
When I first saw this frail unconscious woman, felt her hand, and asked for more detail from the family, I wondered whether her situation was irreversible. So, in the dim light, trying not to counter all that had been said by the ED doctors which had alerted three generations to arrive in the early hours, I introduced the new idea that we would wait and see and … that maybe she will wake up.
By the following evening she was arousable. By the next day she could say a few words and smile, though a bit confused. We treated her kidney infection. She gradually sipped water and smiled more. There I witnessed the resurrection of a lady attended with the infinite patience of a caring family. They loved their mother. They loved their grandmother.
I hoped that the young doctors who accompanied me on our rounds each day understood the mystery and power of what was going on in that room – not the fact that she became physically better but the honor and dignity that was in the air. As we entered that space of dignity we breathed that same air. It did not belong to one person. It was co-created.
Dr Sinéad Donnelly, an Irish doctor, is a Palliative Medicine specialist and General Medicine physician at Wellington Hospital.
1. Chochinov HM, Hack T, Hassard T, Linda J. Kristjanson LJ, McClement S, Harlos M. “Dignity Therapy: A Novel Psychotherapeutic Intervention for Patients Near the End of Life.” Journal of Clinical Oncology 23;24 (2005) 5520-5525.
2. Chochinov HM, Hack T, McClement S, Kristjanson L, Harlos M. “Dignity in the terminally ill: a developing empirical model.” Social Science and Medicine 54 (2002) 433-443.