Suffering

Psychological and Social Aspects in Loss, Grief, and Care

Robert DeBellis, Eric Marcus, Austin H. Kutscher, Carole Smith Torres, Virginia Barrett, Mary-Ellen Siegel, Robert DeBellis, Eric Marcus, Austin H. Kutscher, Carole Smith Torres, Virginia Barrett, Mary-Ellen Siegel

• Publisher: Routledge
• Year: 2014
• ISBN:
  9781317840169
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

Learn to help others understand, cope with, and even overcome emotional and physical suffering. Suffering: Psychological and Social Aspects in Loss, Grief, and Care is a unique and insightful volume of observations, anecdotes, and case studies about suffering. In this important book, doctors, nurses, teachers, funeral directors, and members of the clergy discuss the crucial physical, emotional, and psychological issues that patients and their families must confront when death is imminent. They address a variety of topics including terminal illness, chronic illness, loss, grief, and pain. Ideal for professionals who work with dying people and their families, Suffering highlights topics that are particularly common when working with AIDS patients, cancer patients, children, the elderly, and the mentally ill.

Home Care for the Dying Child with Cancer: Feasibility and Desirability

Ida M. Martinson

BACKGROUND

Despite encouraging advances in the treatment of childhood cancer, death remains the long-term prognosis for some children with cancer. Hospitals have traditionally been the setting for the treatment of children with cancer. Hospitalization is, however, particularly frightening and upsetting to children. For children under five years old, the greatest fear is caused by separation from their mothers, in addition to separation from other family members, the home, and their playthings. Hospitalization forces separation from the mother at the same time that it introduces the child to new people and places and, frequently, to painful routines. In addition to their fear of separation, children over five are preoccupied with threats to their bodily integrity and functioning (Spinetta, Rigler, and Karon, 1973). Children’s need for their parents increases markedly during serious illness, but hospitalization has traditionally reduced their access to them. Currently, pediatric oncologists often attempt to administer cancer treatment protocols to children on an outpatient basis. However, when these treatment protocols have been exhausted and their cancer is still out of control, children are generally hospitalized for the final days of their lives.

As a result of the attention directed in the late 1960s and 1970s to children’s needs during hospitalization, including the need to understand their disease status, health care professionals have attempted to change their facilities to meet these needs (Green, 1967; Kundson and Natterson, 1960; Easson, 1976; Spinetta, 1974; Waechter, 1971; Bluebond-Langner, 1978). For instance, rooming-in is becoming available for mothers, and family members may visit at any time (Sauer, 1976; Friedman, 1977). Attempts are also currently being made to encourage family participation in the child’s care in the hospital (Ayer, 1978; Korsch, 1978; Hardgrove and Kermoian, 1978; Jackson, 1978). Changes in communication among dying children, their families, and health care professionals are also being encouraged. Parents and professionals are encouraged to be honest and supportive in their openness with these children, allowing them to ask questions as often or as infrequently as they can emotionally handle.

Despite these progressive changes in acute-care hospitals, such facilities are somewhat at odds with the needs of dying patients, both children and adults. Hospitals focus on curative, restorative care; their technology, protocols, and professionals all work toward the goal of cure or restoration. People with diseases that have failed to respond to this approach no longer appear to fit into the hospital framework of health care delivery. Hospice care is an alternative to acute-care hospitalization for dying adults and children. July 1967 marked the opening of the well-known St. Christopher’s Hospice in Sydenham, England (Saunders, 1975). Numerous other hospice facilities have been developed since then (Lack and Buckingham, 1978; Mount, 1976; Hackley et al., 1978; Lamers, 1978), and most of them are based on the St. Christopher’s model. St. Christopher’s Hospice has a 55-bed inpatient facility that seeks to provide physical, emotional, social, and spiritual care to dying patients, predominantly those dying from cancer. The main objective is to provide comfort care; special attention is paid to pain control. The skills of physicians, nurses, social workers, clergy, pharmacists, volunteers, and others are joined to help dying patients. The patients’ families are involved and bereavement services are provided to assist surviving members.

Home care is another method of health care delivery to the dying. Dying children usually wish to be at home, to have their parents at hand and not to be subjected to unnecessary intrusive procedures. These wishes are not antithetical to the children’s needs. Parents are the normal providers of their child’s care and emotional support, and may continue to give care in their own home even when the child is dying. Home care has been central to the development of hospice services. Patients receiving home care having nursing and other services available to them 24 hours a day. Should home care be no longer desired or feasible, the dying patient may enter an inpatient hospice facility that strives to provide a home-like atmosphere and places few restrictions on visits.

Home-care services have been available in the United States for adults and children since the early 1900s (Freeman, 1963) through public health and visiting nurses agencies. However, public health nursing agencies have not traditionally been structured to provide the 24-hour, seven-day-a-week coverage that is an important component of comfort-care services offered at hospice facilities. Hospital-based home care programs have been increasing in number, but have not typically provided 24-hour coverage.

PURPOSE

The purpose of this study was to explore the feasibility and desirability of home care for children dying of cancer. The study was based on two premises: that after the cessation of cure-oriented treatment, when death is the inevitable outcome, it is desirable for children to return to their homes, and that it can be feasible for a child’s family to provide the necessary comfort-oriented care with the assistance of a home-care nurse and with a physician serving as a consultant. In order to explore the feasibility of this home care, the first priority was to provide and refine a model of home-care service for dying children that could eventually be delivered through existing community services.

The findings on the first phase, the provision and coordination of home care, are reported in this article. Preliminary information on this phase has been published (Martinson et al., 1978a; 1978b). A preliminary report on the second phase, the transition of home-care services to the community, can be found in Moldow and Martinson (1980).

METHODS

Procedure

The primary goal of our model was the provision of comfort to the dying child at home including, if desired, actual death at home. We postulated that the comfort-care measures needed would be within the expertise and training of a home-care nurse, who could be the health professional responsible for coordinating care. We also postulated that the parents could function as the primary caregivers and decision-makers. These roles are often difficult, if not impossible to maintain when a child is in the hospital, but are entirely appropriate when the goal is comfort-care of the child. The parents were thus considered the primary caregivers, the nurse coordinated the home care, and the physician acted as a consultant to the nurse and family.

Coordination of the home nursing service components of this study was located at a university school of nursing, although it remained administratively separate from existing nursing services. After a child was referred to the project by a physician, a nurse from the home-care project staff contacted the child’s parents. The nurse explained the project to the parents and secured their informed consent. If the initial referral was made by another health professional, such as a pediatric oncology nurse, the patient’s physician was contacted before any communication was undertaken with the parents.

Because of the limited number of research staff available to provide home-care services and the geographic distribution of families, it was necessary to contract for nursing services for most of the participating families. In some instances, home-care nurses were located through family recommendation; in other cases, local community health institutions were asked to identify nurses who would be willing to assist families and participate in the study. A back-up nurse was also secured to provide home-care services when a primary nurse was not available. Two project nurses oriented the home-care nurses to the special services they would provide and offered continued consultation.

The home-care nursing services provided by the project included the following: (1) each family’s home-care nurse was on call 24 hours a day, seven days a week; (2) the nurse went to the home whenever and as often as the family requested, without questioning the necessity of the visit; and (3) the nurse was available to help the family in whatever way was deemed necessary, beginning at the time of the patient’s discharge from the hospital and continuing throughout the home-care period, as well as during and after the child’s death. Attendance at the child’s funeral was desirable and follow-up within the first month to assess the family’s situation was encouraged. If the family appeared to lack adequate internal or community support to assist them through the grieving period, the nurse referred them for additional professional assistance in their community.

In addition to the nursing services, a physician (usually the child’s oncologist) served as a consultant to the family and the nurse, and was available by telephone at all times. The option of readmission of the child to the hospital remained open at all times.

Subjects

Criteria for referral to the home-care project were (1) the patient was 17 years of age or younger, (2) the patient was dying of cancer, and (3) no procedures requiring hospitalization were planned at the time of referral. A total of 64 children were referred during the phase of the project reported here. Referrals were received from 23 different physicians from university hospitals and nine other hospitals in the state. The university hospitals were the largest source of referrals, providing 53 percent of all referrals received.

Of the 64 children referred, one experienced a spontaneous remission and was subsequently withdrawn from the project. Three additional children were referred because no further treatment was available for them; however, these children were not appropriate subjects for this study because their prognosis indicated that they could expect months or even years of life. An additional two children who were expected to be nearing death at the two-year cutoff time of the study were referred to existing community home-care agencies.

Data Sources

Research data was derived from the children’s m...