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Index: Ostomy Wound Manage. 2012;58(1):24–34

Abstract
  The number of people requiring palliative or hospice care who have a fecal or urinary diversion is increasing, but the literature about the number of persons with a stoma receiving end-of-life care, or research to help guide that care, is very limited. A broader review of the literature and clinical experience indicate that several progressive changes will affect the ability of persons with a stoma to provide self-care, including motor, sensory, vision, and cognitive deficits. It is important for the wound ostomy continence nurse (WOCN) to anticipate these changes and take steps to address them. The latter may include simplifying the equipment or accessories used and identifying and teaching caregivers how to manage the stoma or empty a continent diversion or neobladder. A thorough assessment and stoma care adjustment also are needed when peristomal complications such as a change in the abdominal plane, mucocutaneous separation, or caput medusa are observed. Medication absorption and its effect on fluid and electrolyte balances must be considered at all times, especially in persons with an ileostomy, and the elimination side effects of commonly used medications in the palliative and hospice care environment must be monitored and addressed. The Advanced Practice WOCN with knowledge about end-of-life care can help prevent complications and improve patient quality of life. Research is needed to increase understanding about the scope of these problems and best practices to address them and to understand the experience of patients with a stoma at end-of-life.

Keywords: ostomy, palliative care, hospice, complications, advanced practice nursing

Potential Conflicts of Interest: none disclosed

  After an average lifespan of 77 years, most Americans will experience a slow, debilitating, progressive chronic disease that lasts an average of 3 years for women and 2 years for men until death.^1,2 During this time, palliative care provided by skilled clinicians will help alleviate suffering.

  The World Health Organization’s³ (WHO) definition of palliative care is generally accepted: “Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.” Palliative care is not dependent on prognosis and can be delivered concurrent to curative treatment. This distinguishes palliative care from hospice care; the latter is a philosophy focused on terminally ill patients — ie, people no longer seeking curative treatments who have a life expectancy of 6 months or less.

  The National Consensus Project for Quality Palliative Care⁴ contends the continuum of palliative care starts at the “Diagnosis of Serious Illness,” continues with “Life-Prolonging Therapy,” and concludes with initiation of the “Medicare Hospice Benefit” and death. It is imperative to appreciate this potentially lengthy gamut of care; many practitioners and laypeople perceive palliative care as a service reserved only for the actively dying.