The commentary, Dying without Hospice (April Goode, Feb.23, 2004), succinctly overviewed the impact of late referrals of terminally ill people to hospice—that patients die without the benefit of extended hospice support. A longer length of stay allows the hospice team to address the full spectrum of physical, psychosocial and spiritual end-of-life care needs as the patient and family journey through this very sacred part of life.
The nursing profession understands all too well that our culture is not comfortable with death. Not only has death been removed from the home since the advent of curative medical knowledge and interventions, hospitals, and life support measures with death-defying sophistication, but death has been "Hollywoodized." Americans have a fascination with death; our entertainment industry capitalizes (and profits) by our country’s cultural immaturity regarding end-of-life and thus helps perpetuate the denial and avoidance patterns. Although Americans see many types of death via the entertainment industry (the average American child has witnessed 16,000 deaths by age 18, Center for Media and Public Affairs 1992) our culture lacks universal wisdom surrounding end-of-life issues.
The nursing profession has long been a change agent in acceptance of death as a part of life and provision of comfort and compassion. A nurse, Dame Cicely Saunders, pioneered the modern day hospice concept. Understanding and responding to the needs of the terminally ill patient and his or her family have come a long way since the introduction of the hospice concept into mainstream medical intervention in the last several decades. But we still have far to go to increase hospice access and increase length of stay.
The nurse can be the catalyst to start this process, one patient at a time, one family at a time. Our understanding of hospice and palliative care programs and provision of choices for patients and families nearing life’s end can make the difference—however, to incorporate this into our practices, we must first do our homework. Involved are five tasks to help facilitate earlier hospice referrals:
1) To start, a full understanding is needed about the concepts of palliative care and hospice end-of-life support. If a nurse is unfamiliar with the concept of palliation, a variety of local and national resources exist that are informative and helpful. In the Denver area are several palliative care programs and 13 hospice agencies. Some offer comprehensive educational programs on end-of-life care. Extensive professional information is also available on the Internet. (See side bar for list of web sites.)
2) The criteria for admission into hospice for those with end-stage disease must be familiar to the professional nurse. While admission into hospice is essentially driven by three factors—the patient has a terminal diagnosis with a six month or less expected survival, the physician orders a hospice evaluation, and the patient and/or family agrees to hospice care—there are specific criteria for determination of hospice suitability for end-stage disease conditions. Hospice agencies are a resource in this area.
3) Professional hospice organizations offer grief/loss support for the professional whose personal history of loss interferes with the ability to "be present" when his or her patient changes course from curative to comfort measures. Personal prejudice, bias or emotional pain need to be recognized and processed in this area of nursing practice or patient needs can be compromised and at the very extreme, be ignored or denied.
4) Willingness to bring up the hospice choice to the patient and family is critical when a nurse’s professional judgement assesses that this course can provide comfort and support to a terminally ill patient and his or her family. Broaching the hospice topic is a sensitive and difficult task even for the seasoned professional. Utilization of the vast local resources is helpful in the quest to become more at ease with the often uncomfortable conversation. For example, Hospice of Metro Denver has a program for health care professionals that teaches about initiating the hospice conversation with patients and families.
5) Patient and family advocacy for palliative and end-of-life care is an important role in our nursing practice. Physicians may not be trained in palliative care and/or hospice concepts. The nurse’s position to advocate for comfort sooner rather than later is critical to give the patient and family more time and opportunity for support. Life’s important end-of-life issues are not easily worked through under the duress of late end-stage disease processes. An earlier hospice referral is a gift to the patient and family that they may not understand immediately—but will come to understand as time passes. Opening the door through willingness to talk about death and comfort measures often brings a great sense of relief to the patient and family; they can move on to do specific meaningful tasks that arise only at end-of-life.
Contrary to common myth, hospice care is not about death—it is about supporting the patient and family through a very special time of life. Hospice offers hope, a hope that the patient can live comfortably and with meaning and dignity until death. Everyone with a terminal illness deserves to have that precious opportunity.
Earlier hospice referral can accomplish just that—a nurse’s compassionate conversation can be the catalyst to start the journey.
(Laura J. Watt, RN, works with Hospice of Metro Denver. Any questions, comments or requests for resource material can be directed to her at 303-321-2828.)