Educational needs of home caregivers of terminally ill patients: literature review

Hospice care continues to be a rapidly growing philosophy of care at the end of life. One of the fundamental principles of hospice is the role of a primary caregiver to provide for the needs of the terminally ill loved one. Typically, a spouse, adult child, sibling, close friend, or significant other fills this role. Usually, the caregiver has no formal training in caregiving and is learning all aspects of providing for all the needs of the patient. This is an awesome responsibility and quite overwhelming for most caregivers. A research synthesis was completed to assess the educational needs of caregivers of terminally ill patients. The computerized literature search of several databases found very few studies on the educational needs of caregivers. The few studies that have been done have used both quantitative and qualitative approaches, using a variety of assessment tools, looking at several different populations, over varied time periods. In spite of the variety of methods and populations studied, all the studies came to similar conclusions. The needs of the studied caregivers fall into three main categories: needing information on meeting the physical needs of the patients, community resources, and the patient's illness. The findings provide a basis for further research to build a comprehensive educational program that maximizes the role of the caregivers of terminally ill patients.     

Study of terminally ill patients' needs in an university hospital

Within the framework of a project to create a Mobile Palliative Care Unit, in May 2000 we conducted an evaluation of the needs of patients undergoing palliative care in a university hospital centre. Thanks to the use of a standardised questionnaire, a team of doctors and nurses for each service was able to describe the symptoms, treatments and social and family situations as well as assess the eventual outcome of the patients hospitalised in their service who were in an advanced or terminal phase. In total, the study included 52 cases (5.5% of available beds). 81% of patients reported suffering from physical discomfort and 70% from psychological distress. A specific treatment for the disease in question was maintained in 28% of the cases. In 24% of the cases, the patient had social problems. Among all of the patients, 31% were on the waiting list to be transferred to a different location.     

Remote psychotherapy for terminally ill cancer patients

We conducted a feasibility study of remote psychotherapy in 10 terminally ill cancer patients with diagnoses of adjustment disorder or major depression. Subjects received six sessions of individual cognitive therapy with the same therapist. Sessions alternated between face-to-face sessions and remote sessions delivered by analogue videophone. After each therapy session, a brief questionnaire was used to evaluate the subjects' level of satisfaction with the session, sense of connectedness to the therapist and overall progress being made in the therapy. Nine patients completed the study. Of 53 completed therapy sessions, 21 were by videophone and 32 were conducted face to face. Participants reported strong positive perceptions and acceptance after almost all therapy sessions, regardless of service delivery mode. The study suggests that there may be a role for the delivery of psychotherapy using low-bandwidth videophones.     

Responding to the needs of the terminally ill through laughter and play

Care for the terminally ill has greatly expanded. Humor and play, however, remain largely unexplored, surrendered to the cultural expectation of dignity and respect for the dying. This paper suggests several uses of humor and play with the dying, and the benefits of these interventions with patients, families, and care givers.     

Use of TPN in terminally ill cancer patients.

Total parenteral nutrition (TPN) is often used as an adjunct to cancer therapy. However, it is increasingly being used in terminally ill cancer patients without clearly defined reasons. To determine the validity of the use of TPN in terminally ill cancer patients, 26 patients with limited life expectancy due to end-stage cancer were given TPN by their physicians, and the validity of its use was evaluated using the criteria of 1) quality of life, and 2) ultimate outcome. Patients were divided into two groups according to the use of TPN. Group I = TPN as adjunct of medical therapy, n = 15 (eight male, seven female), mean age 32 y. Group II = TPN for in-hospital supportive care, n = 11 (two male, nine female), mean age 56 y. Nutritional status on admission, quality of life (assessed by extent of daily activities, pain, and ability to sustain oral intake), and ultimate treatment outcome were determined. Mean weight loss in patients in Group I was 8.6 kg, 11 patients out of 15 were malnourished; mean weight loss in patients in Group II was 21 kg, and all of the 11 patients belonging to this group were malnourished. Two patients of Group I improved their quality of life, while 6 declined and 7 died; in Group II, 3 improved their quality of life, 4 declined, and 4 died. We conclude that when TPN was given either as an adjunct to in-hospital aggressive therapy for cancer or for in-hospital supportive care, quality of life did not improve in the majority of patients; nor did it influence ultimate outcome. These objective data, thus, raise the question of the validity of the use of TPN in terminally ill cancer patients. However, barring the cost factor, it is recognized that subjective reasons for giving TPN to terminally ill cancer patients persist and include compassionate, ethical, religious, or emotional reasons.     

Determinants of hospice utilization among terminally ill geriatric patients

Terminally ill geriatric patients have been found to prefer the type of care provided by home health hospices to the life-sustaining technologies received in hospitals. Nevertheless, disproportionately few dying elderly patients enroll in available hospice programs despite their preferences for, and Medicare's coverage of, hospice services. This study examines several critical factors expected to facilitate or inhibit the utilization of home-based hospice services. Seventy-six critically ill aged patients, their physicians and primary caregivers (e.g., family members) were interviewed about their attitudes and actions regarding the treatment of dying patients. The results indicate that patients who acknowledge their terminal health status, whose physicians disclose the terminal prognosis to them and do not fear malpractice, whose primary caregivers know about hospice and believe the patient would be receptive to enrollment in such a program, have a relatively high probability of home health hospice utilization.     

On being terminally ill

In summary, it would seem that the term terminally ill is used to convey an impression that has been formed by the carers, based on actuarial data for the particular disease from which the patient is suffering, their clinical experience dealing with others similarly affected, and a set of traditionally held beliefs. The consequences of describing someone as terminally ill are legion, affecting all aspects of care and involving the belief systems both rational and primitive of carers and patient alike. As long as we understand that it is an opinion, rather than a statement of fact, then the term terminally ill can serve an important function in communicating information in a readily understood form.     

Praying with the terminally ill

Terminally ill persons and their families will communicate their own prayer needs to healing persons who are attending carefully. A number of guidelines may also be helpful to healers in developing the personal characteristics needed to minister effectively and in determining when and how to pray with patients.     

A qualitative study of self-transcendence in caregivers of terminally ill patients

Despite changes in social and cultural structure, the family has remained a consistent provider of in-home care needs for the chronically and terminally ill. The experience of a terminal illness is not limited to the individual patient and creates a myriad of challenges for the family, including the struggle to adjust and respond to the demands of the situation. The purpose of this study was to assess the caregivers' sense of emotional well being and their ability to transcend and find meaning in the caregiving experience. The participants in this study were all caregivers of a family member who had died six to 12 months prior to the interview. They were able to find meaning as a result of their caregiving experience within the context of supportive networks, caregiving actions, grief and loss, fatigue, financial burdens and multiple challenges. Finding meaning involved "being with" or "doing for" their loved one as death approached. Finding meaning had positive consequences for the caregivers. They described a new life view and were able to reach out to help others as a result of their caregiving.