Deliberate Dialogue: Facing Death
How do we confront life’s final and inevitable challenge?
Dr. Harvey Chochinov opened his seminar, part of the University of Manitoba Alumni Senior Lecture Series, with a short video: from birth we begin our flight, flying through calm skies, turbulent headwinds, and then landing, sometimes softly but often with a hard bump. His work involves finding ways to soften the hard bump of landing that we all face.
His presentation referred to the notion of the will to live. Questions about whether the strength of our will to live is related to the level of pain we experience led to inquiries dying with dignity. Studies from the BenLux region of Europe indicate that 60% of those who seek assisted death cite loss of dignity as a reason for their choice, whereas only 5% cite pain as the reason. For many, losing dignity is associated with vulnerability, our notions of how others value and need us. When my mother talked about the end of her life, her greatest fear was becoming a burden to her family. So long as she could cook for her family, help with the care of her grandchildren or sew and knit for them, she felt needed. Her self of self, her personhood, involved the notion of helping and giving to others. When her family moved away and when her grandchildren no longer needed her, she began to lose her notion of self. She feared that people began to see her as needy. The Escher picture shows what the eye of the beholder sees. Chochinov and his colleagues maintain that those who work with the ill, aged or dying should see the individual and try to find out what has been and remains important to them. He differentiated between health care, which is knowledge-based and technically proficient, and health caring, which includes caring for the individual as well as knowledge and technique. When the needs of patients and families are not met by what the system offers and delivers there is patient dissatisfaction with the care but also an elevated incidence of professional burn-out since caregivers feel unable to offer what patients need.
The psychology of illness is the psychology of loss. When prolonged illness occurs, personhood is under assault. We viewed slides showing data gathered through questions about “Dignity Model”. Questions about feelings of worth, not feeling that the person had made a meaning or contribution, feeling a lack of control over one’s life, feeling a burden to others, and not being treated with respect or understanding were important to more than 80% of individuals. The rates for learning of distressing symptoms, wondering how life might end, uncertainty regarding the illness, and feeling depressed and anxious ranged between 40-70%.
An interesting study in progress involves caregivers speaking to patients and asking them: “What should I know about you as a person to help me take the best care of you that I can?” After patients had read and revised their responses, they were asked: “Can I put this on your chart?” these two questions enabled patients to explain what is important to them, who they are as individuals, and allows caregivers to learn about the individuals in their care.
Chochinov concluded the presentation by reminding us to hold end of life conversations, to name a health-care proxy and provide advance directives. HE also recommended q website with additional information: the Virtual Hospice.