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When Ward Smythe (not his real last name) lay dying at home, a hospice nurse eased the family’s distress by describing differences between symptoms of pain and normal reductions in breathing and organ function. She also made herself available 24/7 by pager, so when the end came, the family had her immediate support. Without the hospice nurse, the family would have had only a vague idea of what to expect at the end. They also would have borne the burden of making arrangements with the morgue. The hospice team of a physician, social worker, home health aide, nurse and volunteers from the community eased the family’s worries by helping them arrange Smythe’s affairs ahead of time. Often, hospices offer up to a year of bereavement support after a family member dies. Toward the end of life, few people realize that breathing slows down, often in alarming bursts. Organ function ebbs. Pain may be excruciating. In the past, physicians worried that prescribing enough pain medicine to make a dying patient comfortable would lead to addiction. Often, patients died in the hospital, away from family—hence the lack of knowledge about breathing changes. But recent changes in medicine, wherein pain has become "the fifth vital sign," accompany the advent of a growing specialty for nurses in palliative and hospice care. Comfort is the key word for both. Palliative care usually takes place in the hospital, where a patient still receives treatment for a disease, while hospice care begins when treatments no longer are effective against the disease and a physician has diagnosed the patient as having no more than six months to live. The nurse is the pivotal palliative caregiver—the cog in the wheel. She has the responsibility of keeping all the other caregivers involved, so she needs to know all the patient’s needs, said Judy Lentz, MSN, RN, executive director of the Hospice and Palliative Nurses Association. The nurse is an educator for the patient and helps the family by teaching them to care for the patient, she added. Because most people prefer to die at home, the families greatly benefit from the hospice care support, said Cathe Clapp, MN, RN, interim vice president of operation administration at Swedish Medical Center/Ballard in Seattle. "I think the consistency, teaching, presence, being available by ‘bell boy,’ and being available after the family member dies make hospice care an ideal environment for a nurse," Clapp said. But for laypeople and clinicians unfamiliar with the specialties, misconceptions abound: Is pain management addictive? There’s no such thing as addiction for someone with a terminal illness, Lentz said. Some perceive pain as a psychological need, but in patients with a deteriorating condition, a real physical need exists for pain management, she said. Relieving pain reduces the progress of the disease, as research shows that living with pain can reduce the immune system and allow tumors to grow, said Nancy Kowal, MS, NP, RN, president of the American Society of Pain Management Nurses. Do they hasten death? Skeptics of palliative and hospice care associate it with physician-assisted suicide, but that’s precisely what it’s not. Palliative caregivers believe in allowing patients to choose from three options: aggressive, traditional treatment; whole-patient wellness treatment; or just pain treatment to allow for a comfortable, natural death. End-of-life care has received national attention recently because of the two-year congressional debate over the Pain Relief Promotion Act. More than 50 health organizations oppose the bill and have rallied to present a unified voice to Congress. At face value, it looks like a neat step forward, said B. Eliot Cole, MD, MPA, an instructor for Education for Physicians on End-of-Life Care, an initiative of the American Medical Association’s Institute for Ethics. "But the second part is the chilling side effect of the bill," he said, referring to the oversight of pain medication by federal Drug Enforcement Administration officers. If a physician is thought to be aiding a patient in committing suicide, he or she can be investigated and sentenced for up to 20 years in prison. The legislation, approved by the House, is to be debated by the Senate this session. Can patients afford this care? Palliative care usually is covered along with traditional treatment in the hospital. Medicare sometimes covers hospice care, with varied restrictions. Most families don’t know hospice care is available to them through Medicare, so only about 20 percent of American patients take advantage of it, said Corrine Anderson, MSN, GNP, RN, who is coordinating the development of a palliative care consulting team in the Dallas/Fort Worth area. Anderson, a hospice nurse for more than 17 years and a geriatric nursing instructor at the University of Texas at Arlington, is working with the Community Hospice of Texas and the Harris Methodist Fort Worth Hospital to create a partnership that will provide more hospital patients with palliative care. Until recently, few nursing programs taught end-of-life care. But, Clapp said, there also are a lot of other areas, such as operating room techniques, not covered in nurse training. In the wake of the Joint Commission on Accreditation of Healthcare Organizations standards for assessing pain after every shift, that part of pain management has been mainstreamed. It’s a good thing that palliative/hospice care is becoming a specialty area for nurses, Clapp said. "It’s an area nurses can excel in, because it involves the needs of the patients, which is very ‘in sync’ with nursing care." |
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NEWS
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