Compassionate care of those with life-limiting illness requires presence

July 1, 2013


ANAHEIM, Calif. — In a "death-denying, death-defying" contemporary culture, Catholic care providers are called to better formulate a Christian response to the ill and frail facing decline, dependence and dying, said pediatrician Sr. Nuala Kenny, OC. She was the opening speaker at a June 1 pre-assembly program, "Caring for Those with Life-Limiting Illnesses." The daylong program was attended by professionals and ministry members who care for the elderly or seriously ill, including members of religious communities in Catholic long-term care and assisted living facilities.

Sr. Kenny, professor emeritus of bioethics at Dalhousie University in Halifax, Nova Scotia, outlined the differing trajectories of decline commonly faced by patients with terminal cancer, dementia or a life-limiting chronic illness. Patients with cancer may maintain a steady level of health for a long period, but then experience a rapid decline terminating in death. Patients with dementia may function at a lower, but relatively stable, level of health for a long period of time, with increasing cognitive impairment. Those with serious relapsing chronic illness may have periods of acute decline, followed by a recovery but with some permanent loss of health status following acute episodes.

Not all patients benefit from lifesaving technology at every stage of their disease or natural decline, Sr. Kenny said, and in certain patients with end-stage illness, the use of technology can be "death-prolonging." Sr. Kenny told the audience of 113 professionals that in modern society, the frail elderly may be wrongly viewed as a burden by some. She said the Christian view is that all individuals are brothers and sisters in Christ and that dignity is inherent in the human person, irrespective of their health or age.

Sr. Kenny said that when Jesus healed, he addressed physical ailments, but he also healed the spirit, thus restoring the integrity of the individual as a physical and spiritual being.

As part of this holistic healing, Jesus restored the healed to the greater community. The Catholic faith tradition believes in the interdependence of individuals, Sr. Kenny said. Society is compelled by Jesus' example to show compassion and care for the frail elderly and the chronically ill, she said.

Team approach
Another panelist, Dr. Melinda Lee, a geriatrician, said that optimal care of the frail elderly involves a care team with a doctor, nurse and therapist who work together to clarify the patient's prognosis, the goals of care and treatment options and to guide decisions related to those options. When the time comes, team members should be available to "walk with them through death," she said. Lee is the former medical director of Providence ElderPlace in Portland, Ore., a comprehensive care program providing health care, housing, social services and care coordination.

She spoke about her family's experiences with illness and death, including her time helping to care for her aging parents. Despite her training and experience, she said, she struggled to help navigate their care. Her mother, who had dementia, had just two weeks of hospice care because her family had never openly communicated about the woman's cognitive status and they failed to recognize or acknowledge her rapid decline.

"In my family, talking about dementia or assisted living was strictly taboo," she said. She used the story to underscore the importance of advanced planning for end-of-life decisions. As a doctor, she has found many occasions where Physician Orders for Life Sustaining Treatment, documents that take a person's treatment preferences and put them in a doctor's order, have helped her honor a patient's wishes at a critical moment in their care, she said.

Life story
Sr. Patricia Talone, RSM, CHA's vice president of mission services, spoke of the significance of personal "narrative," of recognizing the importance of a person's life experience and the person's own interpretation of it. She provided examples of times she had spent with those who were facing life-limiting illness or grieving for a friend or family member and how the stories they shared stayed with her, allowed both speaker and listener to contemplate the meaning and joys of their lives and relationships.

Fr. Thomas Nairn, OFM, a CHA senior director of ethics, gave a detailed overview of several Catholic thinkers and theologians on end-of-life issues. He pointed out ways they differed from the thinking, often found in today's society, that the only proper approach to illness is technical. As the sick may benefit from a pill or a test, they often find comfort, as well, in someone spending time with them and being fully present to them, Fr. Nairn said.

Aging religious
Fr. Myles Sheehan, SJ, a geriatrician and Provincial for the New England Province of Jesuits, provided several steps care providers and facilities can follow to improve care for the aging religious, including a suggestion that the supervisor of pastoral care not be from the same congregation as those receiving care. Aging religious often feel they can speak more freely to someone outside their own congregation, and "they need someone to be able to share their joys and pains with," he said.

Fr. Sheehan also advocated for a team approach and for the education of staff at longterm care facilities caring for frail and aged religious. Staff should receive instruction on palliative and hospice care; on ethics, with an emphasis on authentic church teaching; on religious life; and on the charism of the sponsor. He said an approach to end-of-life care and the specifics related to "do not hospitalize" and "do not resuscitate" orders should be clear before a crisis.

Fr. Sheehan noted that those who are ill and afraid of dying can be cranky or difficult, even the religious: "If you expect everyone to be St. Therese of Lisieux on a good day, you are going to be disappointed." He said care providers should pay attention to their own feelings, making sure they are looking after themselves.

The Caring for Those with Life-Limiting Illness program was organized by a planning committee that included Sr. M. Peter Lillian Di Maria, O CARM., director of the Avila Institute of Gerontology; Sr. Karin J. Dufault, SP, general superior of the Sisters of Providence International Community; Sr. Janet Mock, CSJ, executive director of the Leadership Conference of Women Religious; Tina Picchi, executive director of the Supportive Care Coalition; and Fr. Nairn and Sr. Talone from CHA.


Copyright © 2013 by the Catholic Health Association of the United States
For reprint permission, contact Betty Crosby or call (314) 253-3477.

Copyright © 2013 by the Catholic Health Association of the United States

For reprint permission, contact Betty Crosby or call (314) 253-3490.