The reciprocal ministry of patients and caregivers

February 1, 2020 - 12:00am -- Living City

The reciprocal ministry of patients and caregivers
End-of-life issues are acute in most Western countries. What can the spirituality of unity contribute to this debate?

By Lorraine Lipson

In June 2019 the State of Victoria in Australia passed a Voluntary Assisted Dying (VAD) bill, with other states likely to follow soon. It marked a fundamental shift in Australian legislation, allowing assisted suicide for the first time.

Culturally there has been a worldwide shift to a utilitarian, functionalist notion of life, away from the Judeo-Christian theology of human dignity grounded in the belief that God created every human being.

The New Humanity Movement (the Focolare’s social offshoot) organized a Health Symposium to examine the seminal role of the spirituality of unity in end-of-life care and the end-of-life debate. It was held in Melbourne at the Australian Catholic University on November 24, 2019, and through online streaming included presenters and audiences in Perth and Sydney, as well as in Wellington, New Zealand.

The five presenters represented a diverse range of expertise drawn from psychiatry, philosophy, psychology, ethics, pastoral care and palliative care medicine, all of them aiming to be rooted in the spirituality of unity while dealing with issues related to the end-of-life debate.

Fr. Brendan Purcell, a Catholic priest and philosopher, opened the symposium with a reflection inspired by writings of Focolare founder Chiara Lubich  on Jesus’ commandment, “Love one another as I have loved you” (Jn 13:30).

Lubich and her first friends had come to see that the full measure of that “as” of Jesus was when on the cross he felt so deeply his separation from the Father that he cried out: “My God, my God why have you forsaken me?”(Mt 27:46). However, he transformed that suffering by an act of even greater love, when he continued to offer his life (see Lk 23:46, “into your hands I entrust my spirit”).

The Art of Loving

This love that goes beyond our human measure and nature can be seen in the Gospel and put into practice in our lives. This Gospel-based Art of Loving can be lived out in all aspects of life: family, work, school, relationships.

The children of the Focolare have been using a cube with six different sayings (for example, “love everyone,” “be the first to love”), remembering in a captivating way to put into practice these characteristics of love, in their daily life.

Purcell presented an adaption of this Cube of Love for those working in the health sector, rolling it every morning and putting into practice one point at a time:

  • Take initiative in caring.
  • Care for everyone.
  • Treat everyone with dignity.
  • Reach out to those most in need.
  • Build relationships.
  • Ease others’ pain.

He explored how each point of this Health Care Cube relates to the end-of-life debate and resonates with a person who is considering euthanasia. For example, for the point “Build relationships,” Purcell considers the physician’s love, a love that recognizes the patient’s total being and accepts them unconditionally as an important step in addressing the request for euthanasia.

Death’s taboo

Simonetta Magari, an Italian psychiatrist and professor, subsequently began her discourse by drawing a picture of the late stage of life’s journey, which concerns both young and old.

During this stage a person is confronted with new problems and questions. Most of all, there can be a sense of absolute helplessness in the face of many challenges: the decline and deterioration of physical health, the suffering and dependence on others, the fear of the unknown, the sense of being considered more as an object of care than as a person.

The fear of death is present in all cultures, but more so in modern society, such that the reality of death is considered more as an absence.

“Today’s society, despite its ability to extend life, is incapable of helping us die,” Magari said. “Death is a taboo: one must not talk about it. However, when we do talk about death, it is often devoid of its authentic meaning.”

Furthermore, the daily news bombards us with images of people dying from hunger, war and violence, all of which can make us indifferent to people’s suffering, incapable of feeling for those caught up in tragedy. In fact, our society is referred to starkly as supporting a “culture of death.”

Magari, as a psychiatrist, poses the crux of the end-of-life issue: learning to accept death as part of life. The cultural challenge today is to regain ownership of death, recognizing it as a natural phase of life. It means moving away from denial, and to return to an awareness of death and its value.

Dr. John Kleinsman, Director of the Nathaniel Center for Bioethics, explored in his presentation the idea that the metaphors and language that we use have an ethical dimension that influences and shapes people’s ideas about dignity and consequently a “good death.” In the face of the societal shift to a more functionalist narrative he underlines that we have to renew our commitment to the most scrupulous respect for all human life irrespective of its quality.

Palliative care

True caregiving involves establishing a relationship with the patient that allows medical professionals to look upon the dying person with love. The dying person is almost forced to establish a relationship with caregivers, one that expresses through the language of excruciating pain and suffering the most-feared death.

The point of divergence from the current end-of-life debate was cogently presented by Associate Professor Natasha Michael, Head of Palliative Care Services and Research at Cabrini Hospital in Melbourne. She unpacked what is behind an expressed desire for death (“I want to die”; “Let me die”; “Kill me”) and articulated the leading causes of the fear of dying (dying in pain, dying alone, dying in an institution).

In responding to patients requesting euthanasia, she emphasized how vital it is to take away the shame of their request by acknowledging that they are not alone in their thoughts, thereby avoiding stigmatization. She underlined the need to relate to patients and families as human beings, and to offer good palliative care, which is both a human and a Christian response to the many medical and ethical dilemmas.

Michael presented a very helpful reframing approach, with alternative statements that can be made. For example, if the patient is requesting euthanasia (expressing a desire for death), instead of saying, “I’m sorry I cannot do what you want me to do,” the physician can respond with, “What you have just said is very important for you.  Can we discuss this further?” This kind of active listening opens the possibility for the patients to engage in meaningful conversation.

Fr. Joseph Parkinson, director of the Goody Bioethics Center in Perth, points out that wellbeing has a different meaning in end-of-life care. It is not about getting better again, but “living as well as possible” in every dimension — physical, spiritual, psychological, emotional and relational.

He draws on the work of American ethicist and physician Margaret Mohrmann who reflects on accompanying the dying, emphasizing that “what is required for a truly human life is not the absence of pain, but the presence of other human beings (a community of people).”

We flourish in relationships

In current conversation about end-of-life care and legislation proposing euthanasia, there is often the assumption that each person in a society is an autonomous individual, with inherent right to negotiate life and death on their own terms. In Western and Roman Catholic traditions, the “human being” is thought of very differently.

“We can never fully flourish in isolation from other human beings,” Mohrmann states. “We are individuals created for relationship and through relationship.”

Parkinson suggests putting the person at the center, with the desire to be with the patient, not treating him or her as a disease, but as a person with a disease. Only when united with the patient, knowing what having the disease means to him, can healing begin. He reinforces Michael’s point about palliative care doctors needing to ask appropriate questions to draw the patient out: “What is it about your experience that makes you prefer to be dead?”

“If we can break a person’s experience into more manageable elements, then a desire to be with the patient can teach us something important: that as helpers/healers we also need healing,” Parkinson said. “People who are suffering and dying need a companion to be there as potential partner in dialogue.

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