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As a palliative care nurse manager at Parkland Health & Hospital System in Dallas, Debbie Grabeel, RN ( in red above), must use her assessment and communication skills in talking to patients and families about dying and how to prepare for it.

When she was in high school about 35 years ago, Mary Denise Smith, RN, MS, CNS, watched a family friend die of breast cancer. The limited treatments available at the time could not contain the disease, and the nurses and physicians who cared for her friend could do little to control her pain.

“They felt so horrible,” Smith said. “Because they couldn’t do anything.”

They put the dying woman in a room at the end of a hall and closed the door. Her family, emotionally destroyed by her illness, was overwhelmed and helpless.

“She died alone and in a lot of pain,” said Smith, a palliative care clinical nurse specialist and associate director of the Center for Ethics in Health Care and chair of the ethics consult service at Oregon Health & Science University Hospital in Portland. The experience led her to focus her nursing career on end-of-life care.

As treatments and medications for life-threatening illnesses have evolved, so have — although more slowly — attitudes toward death and dying. In the last several years, following the lead of hospices and patient demand, many health care workers are starting to treat a patient’s death less as a taboo and more as an inevitable event they must treat with respect and understanding.

Many hospitals have specialty care or palliative care teams trained to work with patients and families who face a life-threatening illness. Bedside nurses are receiving more training in knowing when to call in the teams, and how to support patients from the time their diseases are diagnosed. Physicians are learning to respect patients’ wishes to stop aggressive treatment.

But many nurses believe more could be done for patients earlier if health care workers and the public better understood the importance of palliative care.

Recently, a palliative care consortium published a set of guidelines geared toward helping health care professionals establish or strengthen palliative care programs and better care for patients whose needs for information, comfort, and support extend far beyond the means of the best technology and medication.

Hand-in-hand with hospice

In the early 1970s, hospice programs led the way into “a wonderful model of end-of-life care,” said Betty Ferrell, RN, PhD, FAAN, a research scientist at City of Hope National Medical Center in Southern California and a coauthor of the clinical practice guidelines for palliative care published by a group of five palliative care organizations in April. But most hospice programs accept only patients who decide not to treat their illnesses and want only comfort care.

In the last five years, some health care providers realized that the principles based on hospice could be applied to patients with life-threatening illnesses much earlier, to help comfort them and ease their pain, as they pursued other options, Ferrell said. Multidisciplinary teams treat symptoms and pain, and also help patients and families make decisions as the illness progresses.

Palliative care applies not just to cancer patients but also to those with chronic illnesses including heart disease, end-stage renal disease, and others who often die in intensive care units.

Studies show that although more than 90% of Americans say they want to be cared for at home at the end of their lives, more than three-quarters die in hospitals or nursing homes.

Patients’ top priorities include being free of pain and psychological stress, having control over decisions about their care, avoiding treatments that prolong their deaths, and not burdening their families, according to the palliative care clinical guidelines published by the National Consensus Project for Quality Palliative Care.