Family Satisfaction with End-of-Life Care

Afza.Malik GDA

End-of-Life Care and Family Satisfaction

Family Satisfaction with End-of-Life Care 

 Nursing Concerns Other Than Basic Care,Dying Family View About It,Patient Comfort and Family Satisfaction by Baker Study,Why Dying Care Important In Health Care.

Nursing Concerns Other Than Basic Care

    The nurse is uniquely positioned to provide the kind of care most needed by patients and families at the end-of-life transition interventions that not only promote health and healing, but also promote comfort and emotional support for patients and their families. Middle age the nursing model, the desired outcome at end of life is a good death. 

    Given the lack of research available about the needs of dying patients and their families, nurses are not adequately equipped to provide interdisciplinary leadership in establishing evidence-based practice guidelines for caring for patients and families at this critical transition. 

    This review reports on the evidence that exists to guide practice and what knowledge gaps need to be addressed. 

    Specifically, this review focuses on family perspectives regarding end-of-life care: how is the quality of patient care measured and evaluated by the family at end of life; how satisfied are decedents' families with communication and support received at end of life; what are the needs of families and patients and how well are these needs ad-dressed.

Dying Family View About It 

    Teno and others (2004) evaluated the United States dying experience at home and in institutional settings. A sample of 3,275 was generated from death certificates in 22 states. A total of 1,578 actual telephone interviews resulted in providing national estimates of the dying experience for a target population of 1.97 million deaths in the year 2000. 

    The setting was predominately patients dying in an institution (hospital or nursing facility) (67.1%) but also included patients who died at home (32.9%). Of the group who died at home, 12.5% received nursing services, 38.2% did not receive nursing services, and 49.3% received hospice services. 

    The study concluded that one third of respondents cared for by a home health agency, nursing home, or hospital reported insufficient emotional support for the patient and/or one or more concerns with family emotional support, compared with about one fifth of those receiving home hospice services. 

    Of all categories, nursing home residents were less likely to have been treated with respect at the end of life. Of family members of patients who received hospice services, 70.7% rated care as "excellent compared with less than 50% of family members of those dying in an institution or with home health services. 

    The researchers noted that even within hospice care there is a need for improvement, as 1 in 4 respondents reported unmet needs in the management of dyspnea and in the emotional support provided.

Patient Comfort and Family Satisfaction by Baker Study

    Baker and others (2000) examined family satisfaction regarding patient comfort, communication, and decision making at the end of life. The participants were surrogate respondents (97% were family members) for 767 seriously ill hospitalized adults who died. 

    The study design was a prospective cohort study with patients randomized to either usual care or to an intervention that included clinical nurse specialists to assist in symptom control and facilitation of communication and decision making. 

    The intervention was drawn from the Study to Understand Forecasts and Preferences for Outcomes and Risks of Treatments (SUPPORT), which evaluated interventions that increased attention to pain, provided objective estimates of patient prognosis, facilitated communication among medical staff, patients, and their surrogates, and increased patient or surrogate involvement in decision making. 

Sample of Research 

    The patient settings were five teaching hospitals in urban areas distributed throughout the United States. The study examined family members' ratings of patient comfort and communication/decision making in end-of-life care using telephone interviews conducted 4 to 10 weeks after the date of death. 

    The study found that 84% of family members expressed no dissatisfaction with patient comfort, and 70% expressed no dissatisfaction with communication and decision making. Examination of data revealed that the hospital site was the only factor that was significantly related to both measures of satisfaction. 

    The researchers suggested that because the structure of care and practice affected patient satisfaction, defined quality indicators could be used to improve satisfaction. Also, the study found that satisfaction with patient comfort decreased with increasing impact of the patient's illness on family finances. 

    The findings suggested that those with less financial resources might have received less comfort care. The SUPPORT interventions were significant primarily for those patients who died after their index hospitalization. 

    Respondents for those that died after the index hospitalization and had not received the interventions were significantly less satisfied than those who had received the SUPPORT intervention.     

Study Conclusion

    The study concluded that male family members were less satisfied, but greater satisfaction was seen when patients were in less pain (Baker et al., 2000). Stein Hauser and others (2000) gathered descriptions of the components of a good death from patients, families, and care providers through focus group discussions and in-depth interviews. 

    The sample consisted of 75 participants and included physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved families. Six broad components of a good death were identified: pain and symptom management, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person. 

    The study found that for patients and families, psychosocial and spiritual issues are as important as physiologic concerns. For all categories, professional role distinctions were more influential to attitudes than sex or ethnic differences. Physicians' groups' views differed the most from the other groups and offered the most biomedical approach. 

Prose and Cones of the Study

        A weakness of this study was that researchers did not report specifics about other professional focus groups such as nurses. Also, as the researchers pointed out, although all socioeconomic, educational, and age groups were represented, most patients were recruited from a Veterans Affairs medical center and were mostly men, and as a result, these findings may not generalize to other groups. 

    This literature review revealed a paucity of research on the topic of family satisfaction and end-of-life care. It was heartening to find that in the study by Baker and others (2000), in many areas family and patient needs are being well met. However, satisfaction levels were not high across the board, and other research pointed to areas where changes in practice are needed. 

    The research by Stein Hauser and others (2000) begins to build a consensus of what constitutes a good death, but a more comprehensive random sample of patients and families (as opposed to health care professionals) is needed to truly define this concept. The results from such a study could be incorporated into a subsequent study that evaluates how often a good death is actually experienced by the dying and their families. 

    After evaluating the dying experience against a well-defined universal benchmark of what constitutes a good death, it would make sense to apply various independent variables, such as those that have been touched on in the study by Baker and others. 

    The independent variables might include testing the effect of SUPPORT interventions, examining the differences between structure of care provided by same type institutions and then versus other types, and then determining precisely which elements of hospice care make it so much more effective in meeting the needs of dying patients and their families. 

    Another variable to be examined is how professionals in various disciplines are educated (or not) to address the needs of the terminally ill. This variable was touched upon in the study by Stein Hauser and others, but much more could be done to better understand the impact of this component.

Why Dying Care Important In Health Care

    Caring for the terminally ill is an essential aspect of professional nursing, and this review indicates that much research still needs to be done to understand and appropriately care for the dying and their families.


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