Domain 5

Rev. Msgr. Peter R. Beaulieu, MA, STIL

After extensive consultation among various end-of-life organizations, a consensus among them coalesced into what has become known as “Clinical Practice Guidelines for Quality Pastoral Care.” Among the eight domains generated from that effort, covering the scope of palliative care, Domain 5 encompasses the spiritual, religious, and existential aspects that delineate quality in palliative care. One of those domains incorporates aspects of hospice and palliative care, which are related to the spiritual needs of the dying patient and their family. There are also methods to assess the need for spiritual care, communicating with the family about such needs, the role of the spiritual advisor, sensitivity toward cultural and religious diversity, and the need for specialized palliative care spiritual advisors to build relationships with area clergy.

THE AMERICAN SPIRITUAL & MEDICAL LANDSCAPE

According to the late sociologist Peter Berger, in assessing the American landscape, he said, “India is the most religious country in the world, Sweden is the most secular country in the world, and America is a country of Indians ruled by Swedes.” And nowhere is that distinction best revealed than in healthcare. In multiple studies, patients want their physicians to discuss spiritual or religious beliefs with them, and while contrasting studies do acknowledge that physicians consider those questions important, seldom does that happen, even in discussions pertaining to end-of-life care — whether it’s in regard to continuing medical treatment or foregoing non-beneficial, even life-sustaining care. Thus, in many medical situations, and at the utmost during end-of-life care, the decisive questions are those ultimate matters regarding the patient’s understanding of the meaning of death and whether or not there is something beyond earthly life. For patients who believe more life is yet to come, it becomes a matter of how to best care for that hope, when most clinicians either do not share such ideologies or prefer to avoid those ultimate questions entirely and focus on the medical options (or, in some cases, lack thereof).

MEDICAL DECISION MAKING

Among all the possible situations wherein life or death decisions are necessary, at least in principle, most physicians would agree to a Jehovah’s Witness refusal of life-saving transfusions. Less recognized, but equally valid, would be the Orthodox Jewish patient refusing

to discontinue a treatment that the physician judges to be non-beneficial. Thus, in situations where a patient’s life is threatened by illness or the treatment is judged by the providers to be “causing the patient undue suffering,” those ultimate questions about what is divinely commanded, or should almost never be discontinued, often affects the care provided to those two groups. The same respect for such faith-based ultimate decisions should be accommodated for other religious groups, as well. Moreover, death’s meaning differs from the practicing adherents of a faith-based tradition and the predominantly secular nature of contemporary medical decision making.

THE DEFINITION OF SPIRITUAL VS. RELIGIOUS PERSPECTIVE

The prospect of death almost inevitably prompts a more frantic search for answers to life’s ultimate questions: Who am I? What is life? Is there more to life after death? Does life have temporal meaning only or is there an eternal character to life itself? According to Dr. Christina Puchalski, “Spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred."

Religion, on the other hand, is primarily built upon the life and teachings of a recognized leader. Its adherents find in God, regardless of which name they use, answers to where they came from, why they are here, and what it all means. Religion represents the adherent’s faith as the ultimate answer to those questions. Even at the point of death, religious faith often fails to provide followers with definitive answers, but nonetheless, the life of faith constitutes a structure, a code of ethics, and a sense of purpose to a faithful patient’s life. The promise of an afterlife, a fundamental tenet of most organized religions, is another key influence for the religious that can often be threatened by a wrong decision regarding life-sustaining treatment, its refusal, or its withdrawal.

While these two elements are often blurred, the apparent triumph of spirituality over religion can often result in generic, end-of-life care that might be more easily provided, but also should never be a substitute for the recognized religious practices which are the exclusive province of ordained clergy. Those who are so designated and endorsed by higher authorities are the only ones who can legitimately provide that religious care to those patients who believe it to be crucial to the prospect of more life to come. For anyone to imitate what are duly outlined formal aspects to end-of-life (which are divinely endorsed signs) and, instead, settle for merely spiritual or generic pastoral care, constitutes, at best, a dereliction of duty and, at worst, a pretense that flies in the face of properly caring for the dying, religiously affiliated patient. In such tragic situations, patients and their families are vulnerable and at the mercy of their caregivers who are duty-bound to ascertain what their dying patient believes and how best to support those in a time of transition, whether to a better life to come or to face the end of earthly life with as much peace as possible.

Having engaged in ethics consultation and chaired the Ethics Committee at Saint Vincent Hospital for nearly 20 years, it has become clear to me that combining theological training with clinical ethics often reveals the overlooked impact that faith has in complex decisions as life reaches an end.