1. Walker, Diane MSN, RN
  2. Gonzalez, Elizabeth W. PhD, RN, CS

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How and where people die, and the cause of death, is quickly changing in America. During the early 1900s, the average age at death was 47 years. Today, it is over 77 years, and our projected life expectancy continues to increase. People at the turn of the century died much more quickly than they do now[horizontal ellipsis]Often, Americans died at home under the care of family and friends. Today, death is often preceded by years of gradual worsening of disease and disability. Modern medicine's ability to "manage" chronic illnesses has given us considerably more time to live, but not necessarily more quality time for either the individuals who are dying or their families.


The ability to live longer has created a "sandwich generation." Adults in their fifties and sixties are not only caring for parents in their seventies and eighties but also children in their twenties. The pressure on family caregivers, frequently employed full-time outside the home, has escalated significantly in part because the value placed on dying at home has not diminished. Despite the fact that most people prefer to die at home, four out of five Americans still die in hospitals or in nursing homes. Individuals who live in communities where acute care centers exist are more likely to die in those centers regardless of their preference to die at home.


So we are dying in the midst of health care professionals, many of whom readily admit that they are not prepared educationally or (inter)personally to help us die peacefully or comfortably or to be of help to the family. Death is too frequently removed from view in acute care hospitals where family members may even have restricted visiting. This environment also can be a frightening one for children to begin to learn about death and to say goodbye to a loved one.


Nurses who work with the dying arrive by many different roads yet often have similar stories to tell about the journey. Consider a personal experience of one of the guest editors.


I came to it by a second chance. When I failed out of nursing school in my sophomore year, I went to work in a nursing home as a nurse's aide on the advice of my dean. She said, "It will make or break you as a nurse." Notice where she advised me to work. I cared for three women in the home who had a tremendous impact on my life. The first, Stephanie, had cancer with metastasis to the brain. Although she quickly sank into a coma and did not look at me or expect me to talk with her while I bathed her, changed her diaper, and rubbed her back, it was very difficult for me to stay with her for long periods of time. I usually wanted to finish her personal care quickly. At the time it seemed that there was little I could do for her. She was the first person to begin to teach me the meaning of suffering as she endured months of pain and what appeared to be personal isolation.


The second woman, Mrs. Van, had Parkinson's disease but did everything in her power to maintain her independence. After returning to the patient unit from dinner one evening, I found her dead, sitting in her wheelchair. She was the first dead person I had ever seen. The other staff told me to go in and prepare her body for the undertaker. She loved Fig Newtons and had eaten one just before her heart attack. I'll never forget standing outside of myself watching me clean her dentures and bathe her for the last time. I remained with her until her spirit left her body. I was too new at this to know to open the window. Mrs. Van taught me more about the spirit than years in church. Caring for her that night was truly my first religious experience.


The last, Mama, had a wonderful daughter and granddaughter. Someone in the family visited almost every evening. She loved Winnie the Pooh, and we read to her every evening before she went to bed. I always asked to be assigned to her when the family could not come. I can still see her face and feel her fine, white hair. She died in her sleep after a wonderful visit with her daughter.


I returned to Duke University a much different person. My dean had been correct. I do not remember asking why these deaths occurred; why some had suffered and some had not. I understood I was "learning from their experience." Ironically, I did not learn how to die or how to be emotionally present with someone who was dying. I did not learn much about hospice or pain management either because it was not discussed. It was not until several years later after I lost both my parents and lived through a third personal loss that I really learned about those things and can now be emotionally present to share someone's death or the loss of their loved one.


That seems like a lot of dying to get the point. Dying is a profound transition for the family, and it is the ultimate transition for the individual. As health care providers, we become skilled in nursing and medical science, but the care of a dying person encompasses much more.


Hospice programs in the United States evolved as a grass roots movement to improve the care of the dying through palliative and supportive services centered in the home. The federal government created the Medicare hospice program in 1982 and increased the rates in a congressional mandate in1989. From 1984 to 1996 the total number of Medicare-certified hospices increased from 31 to 2,154. This represented a 221% increase in the availability of hospice services provided at home, in the hospital, in skilled nursing facilities, and in free-standing locations.


Despite its growth, the Medicare hospice benefit serves only 13% to 15% of the 2.4 million Americans who die each year. Furthermore, the regulation requires that 80% of the care be provided at home, which precludes use of the benefit by those with no family or caregiver, or by those with caregivers who are not comfortable with the level of responsibility the regulation requires. Hospice continues to be offered after every last hope of treatment is exhausted and often after the opportunity for closure has passed for everyone. In addition, hospice is often misunderstood or improperly defined as giving up, or confined by the need for a living will or a do not resuscitate order. Certain ethnic groups and cultures shun hospice and confuse it with mercy killing or physician-assisted suicide.


The problem of inadequate hospice and palliative care of the dying has been apparent for years; it continues to be a problem. The literature identifies problems in the quality of care as lack of communication, highly aggressive treatment, and inadequate relief of pain and other symptoms.


The key opportunity for quality care occurs when individuals facing death and their families have the time to consider the meaning of their lives, make plans, and shape the course of their living in the light of death. We believe it is time to open up a large-scale discussion on what death, dying, and end-of-life care, including hospice, really are.


In September 2000, national Public Affairs Television, Inc (PAT) made a historic effort to evoke public discussion in a four-part series entitled "On Our Own Terms; Moyers on Dying." The programs included personal accounts of death and dying from people of different cultures, discussions on palliative care and resources available in local communities, alternatives and choices including physician-assisted suicide, discussions on the Alabama model that mainstreams palliative principles into health care, and strategies for community leaders to use to chart a course of action for the future. Local communities were encouraged to use the programs as a springboard for community groups to continue the discussion. The program can be used with health care providers, volunteers, family members, and individuals with (not necessarily dying from) a terminal condition. (More information about the programs and how to obtain copies of the tape and companion materials can be obtained by going to PAT's Web site at


Three areas of hospice care are addressed in this issue of Holistic Nursing Practice (15:2): spirituality, cultural and ethnic differences in approaches to end-of-life care, and pain management. Nurses often find the spiritual dimension of hospice care as one aspect with which they are uncomfortable or feel inadequately prepared to handle. This issue presents two different Judeo-Christian aspects of this dimension of care to enable nurses to assist their clients in their journey to achieve spiritual peace. Vassallo's article presents an approach to spiritual care using Paterson and Zderad's humanistic nursing theory as its framework. She also incorporates Highfield and Cason's four spiritual needs into the discussion of ways nurses can offer significant presence and support to both the terminally ill person and his or her community.


Satterly's article distinguishes religious and spiritual pain. His wonderful personal accounts drawn from his work offer clear examples of the theoretical framework in the care of dying patients. The distinctions he offers between the manifestations of religious and spiritual pain will enable nurses to identify the source of clients' suffering and to work with clergy and volunteers to bring unconditional love to patients' attempts to work through the pain of guilt and fear.


Given the growing diversity in North American communities, providers need to develop sensitivity to the culturally different ways in which people perceive dying and planning for death. Norma Thomas' article describes why culture is so vital at all stages of life. She provides insight into how death, dying, grief, and loss are viewed cross-culturally, with a focus on African Americans.


Inadequate pain management remains one of the most significant deficiencies in the care of dying patients. Pamela Kedziera provides a holistic view of pain assessment and its management in the older population, where limited studies and inadequate education of providers and primary caregivers exist. She provides a comprehensive review of pharmacologic and non-pharmacologic invasive and noninvasive therapies for pain control.


There is a need for more research:


* exploring the question of when palliative and/or hospice care should begin and which models are culturally inclusive, improve the quality of care, and are fiscally responsible


* determining whether the current places where hospice is provided meet the needs of individuals across all age groups


* providing a basis for cross-cultural comparisons



Further, there is a need to evaluate the outcomes of current curricula that are provided to health care professionals on the care of individuals with a terminal diagnosis and the dying. Programs with positive outcomes need to be made more available to health care students.