NSO 2006 Webflash

An expanded role for palliative care

The 2006 issue of NSO Risk Advisor addresses the responsibilities and risks of palliative care. Palliative care for terminal illness has usually been associated with cancer patients, whose survival time is often limited and predictable. That association, however, is merely an artifact of Medicare hospice legislation, which provided benefits for hospice comfort care to patients who were expected to die within six months. The legislation also required patients who chose hospice to forgo further possibly curative interventions like chemotherapy and dialysis. Patients with conditions like chronic obstructive pulmonary disease (COPD), end-stage renal disease (ESRD), congestive heart failure (CHF) or Alzheimer's, whose illnesses also were expected to end in death, were not eligible on two counts:

• They were unwilling to give up treatment to provide real benefits.
• The timing of their death was unpredictable.

"Sine waves"

Patients with chronic illnesses that will eventually end in death have a disease trajectory that James Hallenbeck, MD, describes as "sine waves."¹ Various interventions-oxygen, nebulizer therapy, dialysis, antihypertensives-can keep them functional for long periods. When a crisis requires hospitalization, therapeutic adjustments can be made and the patient improves and is discharged. The intervals between hospitalizations may be long and the return to functionality as good-or almost as good-as before. In time, however, crises and hospitalizations grow more frequent, the interventions more burdensome. After each one, the patient's level of well-being and function is lower than before.

At some point, this downhill course accelerates and the patient's quality of life deteriorates sharply. No one can accurately predict how long this situation will continue or when the patient will die. Fortunately, for patients like these and their families, palliative care-delivered concurrently with treatment-is beginning to be available on a more routine basis.

Barriers to overcome

Patients and families are often unaware that the disease has reached an end state. Typically, caregivers don't talk about the impending death, and physicians often are unwilling to acknowledge what they view as defeat. This is especially true in the atmosphere of the ICU, where heroic measures to stave off the inevitable are routine. The human and economic costs of these attempts are enormous. But this is changing. Nurses who are experienced in the team approach to palliative care have been in the forefront of developing a better way to care for these patients.

A case in point:

The FOCUS project Launched in 1999 by the Hospice and Palliative Care Center of Winston-Salem, NC, the FOCUS program enrolled patients who were referred to them with COPD or CHF.² Betsy Clark, RN, the nurse who founded the project and served as its coordinator, describes FOCUS as a program that provides "coordinated, comprehensive disease management and emotional support." The goals: To reduce the number of exacerbations that bring these patients to the hospital or the emergency department, to manage symptoms so patients can be comfortable at home, and to make patients and staff feel in control of the illness and the plan of care.

• Intensive, ongoing patient and caregiver education in disease and symptom management
• An on-call team (nurse and social worker or chaplain) available 24 hours a day, seven days a week
• An urgent medication kit (which may include oxygen, for instance, as well as drugs) authorized by the patient's practitioner with a standing order for the pharmacy, kept in the home for emergency use by the on-call nursing staff.
• A seamless transition to hospice care when patients are near the end of life, provided by the same team that has cared for them throughout their FOCUS enrollment.

FOCUS has succeeded in decreasing the average number of hospital admissions and increasing patient and family satisfaction with care. It can serve as a model for a nursing-based program providing palliative care to patients with end-stage chronic disease. A detailed description of the FOCUS program is available at www.edc.org/lastacts.

Caregivers need to keep up to date with changes in attitude about palliative care and new programs like FOCUS that reflect them. To protect themselves from liability, however, this knowledge must be coupled with an understanding of state law that pertains to palliative care.

1. Hallenbeck JL. Palliative Care Perspectives. New York, Oxford University Press, 2003
2. Clark B, Heller KS. Providing home-based palliative care for people with CHF and COPD: An interview with Betsy Clark. Innovations in End-of-Life Care 2003; 5(4): www.edc.org/lastacts.

1. Peaceful Death: Recommended competencies and curricular guidelines for end-of-life nursing care. www.aacn.nche.edu/Publications/deathfin.htm.
2. Promoting Excellence in End-of-Life Care, www.promotingexcellence.org.
3. Transforming the Culture of Dying: The Project on Death in America 1994-2003. www.soros.org/initiatives/pdia
4. Nursing Leadership Academy in End-of-Life Care. www.palliativecarenursing.net