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Continence Coach: Continence Care in the Final Stage of Life
Joseph Fletcher, long considered a pioneer and leader in the field of bioethics, argued that people have dignity only if they are able to choose when, how, and why they are to live or to die. Fletcher1 wrote, “Death control, like birth control, is a matter of human dignity.” In the last half century in the US and elsewhere, increased longevity has altered the demographics of death. Medical technology has shifted the primary causes of death from infectious diseases and accidents to chronic diseases and conditions. The place of death also has changed from an environment largely of family and friends to one of strangers and fragmented relationships with specialists.
In today’s healthcare setting, all clinicians caring for terminally ill patients face three major ethical problems: defining death, relieving pain and suffering, and delivering bad news.2 Against this backdrop, quality care for patients in their final stage of life must sometimes involve special considerations, priorities, and guidelines. Maintaining a sense of dignity and calming peace for the patient — as well as engaging the family and hands-on caregivers with education and instruction — is of utmost importance.
Defining death. Western Judeo-Christian theological tradition defines death with a “whole body” consideration — ie, cessation of heartbeat and breathing and the absence of pulse or blood flow. The Jewish faith takes a more narrow view by focusing on one’s last breath; whereas, the Roman Catholic belief occupies a broader view by focusing on the functionality of the heart, lungs, and soul.3 While this belief structure served the healthcare community well for years, the availability of advanced medical equipment and procedures that can allow a human being to remain virtually suspended indefinitely in a persistent vegetative state began to raise questions about viability. It becomes increasingly difficult to know or assess how much pain and suffering the patient and family and friends can endure.
Relieving pain and suffering. Hospice care has greatly influenced how the relief of pain is best addressed in the final stage of life. Following the disturbing findings of a landmark study4 in the early 1990s on pain and suffering at the end of life, a coalition of more than 80 health and consumer organizations launched an initiative to promote improvements in care framed by five broad areas: 1) reimbursement mechanisms for palliative care; 2) pain management; 3) standards for professional training; 4) the education of policymakers and the public; and 5) quality indicators.4 The coalition urged all clinicians to become familiar with the fundamental precepts of palliative care, respect for the patient’s goals and choices, use of an interdisciplinary team, and support to family caregivers.
Delivering bad news. Clinicians working with patients in their final stage of life must be trained to deliver bad news. This begins with the all-important skill of listening. It requires preparation, with primary attention to the setting for exchange — ie, maintaining auditory and visual privacy; making complete introductions of all present, including the patient; addressing the patient as he/she most prefers; sitting down face-to-face; asking open-ended, not closed, questions that encourage the expression of feelings, fears, and any requests for information; not interrupting the patient; being comfortable with silences to give ample time for the patient to process information and verbalize difficult issues; and preceding the bad news with a warning statement of what is to follow.5
Practitioner action items. When death and dying become imminent, the overall goals of treatment may need to be redirected from healing to prevention of complications or deterioration. Management of existing wounds and additional skin breakdown should minimize the risk of systemic infection. The pressure-reducing surface support system may need to be changed. Hydration and nutritional status may need more frequent attention. Pain management also may need to be assessed more often, defining pain by frequency, intensity, and the occurrence of aggravating factors. Nonverbal cues may become more revealing than verbal communication. Measures to keep fragile skin dry and cleansed of urine and stool need to move into overdrive, as appropriate for the patient. Skin management should include using warm water and a mild, pH-balanced cleansing agent; avoiding vigorous massage over bony prominences; moisturizing the skin twice daily; lowering the head of the bed below 30°; using lifting devices rather than dragging the patient; keeping the bed linen clean, dry, and free of wrinkles; shielding the skin from direct contact with plastic-type materials; turning the patient every 2 hours; and using dressings that minimize skin injury from friction or mechanical forces.
Putting yourself on the interdisciplinary, end-of-life care team will help you capitalize on preserving patient dignity and peace.
The National Association For Continence is a national, private, non-profit organization dedicated to improving the quality of life of people with incontinence. The NAFC’s purpose is to be the leading source for public education and advocacy about the causes, prevention, diagnosis, treatments, and management alternatives for incontinence.
This article was not subject to the Ostomy Wound Management peer-review process.
1. Fletcher JC. The patient’s right to die. In: Downing AB (ed.). Euthanasia and the Right to Death. New York, NY: Humanities Press;1971.
2. Hite CA, Marshall MF. Death and dying. In: Fletcher JC, Spencer EM, Lombardo PA (eds). Fletcher’s Introduction to Clinical Ethics, 3rd ed. Hagerstown, MD: University Publishing Group, Inc.;2005:175–205.
3. Brody BA, Engelhardt HT Jr. Bioethics: Readings and Cases. Englewood Cliffs, NJ: Prentice-Hall;1987.
4. Christopher M. State Initiatives in End-of-Life Care. Washington, DC: Last Acts Publishing;2002.
5. Buckman R. How to Break Bad News: A Guide for Health Professionals. Baltimore, MD: Johns Hopkins University Press;1992.
