The deVeber Institute
for Bioethics and Social Research

Three speakers emphasized to a full house both the joys and sorrows that accompany the caregiver as they journey with the dying. The event was “Compassionate End-of-Life Care for Adults with Developmental Disabilities”, an evening co-sponsored by the deVeber Institute and L'Arche Toronto, and held at the L'Arche Gathering Place in Toronto on January 29. 

Susan Morgan, a chaplain, spoke about her personal experiences in ministering to the dying, and expressed her concern about when people “retreat” from those who are dying. She insisted on the importance of “presence”, reminding her listeners that their role is not only to be doing when attending to a dying person, but also just to be with them, sometimes even in silence.

Dr. Paul Zeni, a family physician and specialist in palliative care, emphasized the importance of a holistic approach to caring for the dying, pointing out that pain management is often the easiest of the many elements of care a patient requires. He discussed the importance of respecting the patient's wishes regarding methods and extent of treatment, emphasizing the need for continual communication between the patient and the caregiver.

The final speaker of the evening, Jane Powell, is an Assistant in the L'Arche community, who has completed a course of study in grief and bereavement at Western University. Her talk was focused specifically on the unique difficulties of caring for those with developmental disabilities as they grow weaker. In particular, she stressed the importance of the continual presence of someone who knows the patient well and is attuned to their particular needs.

Dr. Zeni called the time of death a “special time” as well as a frightening one, a time that holds great rewards for those who help their loved ones approach death with the dignity of fellow human beings.

One attendee gave the following feedback: “Each speaker brought a new dimension of learning to the topic. Each segment was productive and included concepts or practices that will benefit people I support.”