Communication Between the Nurse and Family Caregiver in End-of-Life Care: A Review of the Literature

Susan E. Lowey, MS, RN, CHN, BC


Journal of Hospice and Palliative Nursing. 2008;10(1):35-45. 

In This Article

Review Results

A total of 30 articles was identified. The timeframe in which the studies were published ranged from 1995 to 2006. Within this 11-year range, approximately 50% of the articles were from within the last 3 years (>2003). From these articles, it was evident that subcategories could have been made according to country of origin, because various ethnicities and cultures found importance in studying this research topic. About half the articles were from the United States (n = 14), followed by Sweden (n = 4), England (n = 3), Australia (n = 3), Canada (n = 2), China (n = 2), Scotland (n = 1), and Israel (n = 1). The units of analysis for the articles were family caregivers (n = 16), nurses (n = 7), and a combination of family, nurses, physicians, and other healthcare workers (n = 7). Of the 30 articles, 70% were qualitative (n = 21) and 30% were quantitative (n = 9). Of the 21 qualitative, eight were qualitative descriptive, five were grounded theory, five were phenomenology, two were case studies, and one was ethnography. Of the nine quantitative articles, all were categorized as descriptive, correlational, with two that were prospective and two that were cross-sectional.

Most of the literature examined for this paper did not cite any specific theoretical perspectives that had been used as a guide in the studies, which may have been partly due to the qualitative nature that was the focus of the inquiries. Several of the qualitative studies were classified as grounded theory on which a framework was to be created from the ground up, because there was none in existence to guide their question. The phenomenological studies were aimed at describing the lived experiences of patients and their families, and a framework might not be useful to guide this type of research. A common theme among the body of literature examining the nurse-patient relationship focused on the nature of that relationship in which Peplau's framework could be pertinent, as cited by Mok Chiu.[5] The idea of containment was used and applied to the work of community health nurses in a study by Jones[6] in which the nurse serves as a vessel to contain grief and ill feelings of patients and make them manageable. Davis and colleagues[7] reported their findings consistent with the Northouse and Northouse's Health Communication Model in which interpersonal relationships can be influenced by other relationships within a healthcare setting. Another characteristic of this framework incorporates the healthcare clinician's own personal beliefs and attitudes, which affect how care is given and perceived by clients. This particular framework seems to have been applicable to many of the studies examined in which a theoretical perspective was not used. Kennedy-Sheldon and colleagues[8] mentioned the use of blocking behavior on the part of nurses as a way to shield themselves from feeling patients' adverse problems and ill feelings.

Finally, an appropriate framework that was found in a review article on effective communication in palliative care by Dunne[9] cites the 1968 work of Glaser and Strauss in which four categories of the awareness of dying patients were identified. This article focused on the degree to which the dying persons were aware of the terminality of their condition and how and if this awareness was communicated to others. This theoretical perspective could be useful in the context of family caregiver needs regarding communication about the imminence of their loved ones' death by the nurse. Some families might be aware of a poor prognosis but have no desire to discuss specifics relating to the terminal stage. Other families might insist on fluids for hydration and not be fully aware of the terminality of their loved ones' illness.

As mentioned previously, 70% of the articles in the body of literature examined were qualitative research articles, and the remaining 30% were quantitative. Since most articles were qualitative in nature, this seems to be a relevant and sound way of studying communication at the EOL. Common themes from the experiences of accompanying a dying loved one through the final stages of life, valuable elements from the nature of the nurse-patient-family relationship, and the explanations surrounding the needs of family members for the telling of information with sensitivity are questions that can best be studied through qualitative methodology. With the lack of theoretical perspectives noted earlier, the use of grounded theory methods is definitely an appropriate way to look at this important phenomenon.

The use of quantitative methodology in the articles examined for this review was also appropriate in nature as to what questions were being asked. In a study by Harrington and colleagues,[10] the needs were compared between families caregivers of patients who were receiving curative treatment and those in the terminal phase who received comfort measures. The comparison of these two groups through quantitative measures was appropriate. In fact, all of the articles that used this methodology could add to the body of knowledge on this topic area, even when hypotheses were not supported statistically. The use of this method for large-scale epidemiological studies has great importance in painting a solid empirical portrait of areas in need of changes in policy or procedure, as with the study by Connor and colleagues,[11] which looked at family satisfaction with hospice services nationally.

Both the qualitative and quantitative studies comprising this literature review have added depth to this examination. For the purposes of this article, studies have been grouped together based on the four inclusion criteria identified in the beginning of the article. Table 1 lists the studies that explored the nurse-patient relationship in the context of palliative/EOL care. Table 2 outlines research that examines family caregiver needs specifically in the context of terminal illness. Communication between nurses and/or healthcare providers and patients/families in EOL care were listed in Table 3 . Finally, the experience of dying in the context of hospice and/or EOL care were outlined in Table 4 .

Nurse-Patient Relationship. Communication was a central tenet of the nurse-patient relationship in the articles examined in Table 1 . Another key feature was the importance of trust within this relationship. Luker and colleagues[12] found that if communication was successful, it affected the way in which nurses would get to know the patient and form a good relationship, and they determined that high-quality care is derived from effective communication patterns. The nurses' personal qualities and experiences also play a role in effective communication at EOL and within the nurse-patient relationship.[5,13] Another aspect of the communication between the nurse and patient regarding the imminence of death is whether the nurse was present during the disclosure of terminal prognosis.[14] This would support the notion that the nurse, if present during this life-altering event of bad news, would enter into a new place with the patient. A relationship built within the crisis of this new way of life involves the components of trust and sensitivity.

Limitations of the research found in Table 1 include the fact that the unit of analysis in most studies was nurses, not patients or family caregivers. Examination of the nurse-patient relationship from only the nurses' perspective could be an overall limitation to gaining new knowledge in this area. Second, the sample of nurses included those who worked primarily with dying patients and their families and those who did not. Many of the nurses worked on units where most patients did not have life-limiting illnesses and were not all that familiar with relationships and communication with the dying. The settings for these studies were diverse, with approximately half being in home care and half in acute care, which could be seen as a potential limitation because the nuances within the system play a large role in the way in which nurses practice within the setting.

The literature in Table 2 focused on the needs of family caregivers of persons with terminal illnesses in the context of palliative and/or EOL care. The need for communication and information was identified as the most prominent need of family caregivers who care for their dying loved one. However, family caregivers tend to express their needs far less than what they actually feel.[15] Harrington and colleagues[10] found that the need for information ranked the highest among the identified needs of family caregivers of patients still receiving treatment and those in the final stages of life. The level of patient dependence was not found to have an impact on caregiver reactions and demands in a sample of families caring for patients with advanced cancer.[16] This supports the notion of establishing early trusting relationships in which information can be sensitively communicated to family members, not just when the caregiving demands seem to be unmanageable. Strang et al[17] identified a strong desire for family caregivers to remain present in the caregiving environment and take small mental cognitive breaks away from the patient rather than physical ones. Family caregivers also had a desire to make the relationship with their loved one as normal as possible, despite having taken on a new role as caregiver.

Limitations of these studies that examined the needs of family caregivers included the retrospective nature of data collection. There can be some recall bias and general biases of the family caregivers, both in favor of and against the institution or clinician who provided terminal care to their loved ones. This can be particularly disabling to research with small samples in which the family caregivers viewed their loved ones' death as a bad and unfavorable experience. The use of a newly developed instrument for data collection[10] could be a possible limitation.

The importance of a team approach to EOL care was identified in several of the articles found in Table 3 .[7,8,18] Several of the components identified for good communication are similar to what constitutes a good nurse-patient relationship, such as trust, continuity, and understanding.[18] Education regarding effective communication styles and methods was not viewed as preparing nurses for the emotional toll of their work with dying patients.[8] In fact, if communication and the nurse-patient relationship have similar components, the importance of underlying nurse values, beliefs, and experiences might have more of an impact in the latter than learned skills. Nurses' emotions and coping styles related to death and dying were identified by Kennedy-Sheldon et al[8] as main themes that contribute to the nature of communication. Nurses with more negative emotions hindered the communication process and made it more difficult. Timing of conversations between the family and nurses was an important means of fostering support. Family caregivers exhibited great relief at being able to talk about their loved ones' impending death with nurses.[18] Most of the studies in Table 3 had nurses as their unit of analysis, with the exception of two articles by Holmberg.[18,19] This could be a possible limitation in that the concerns of family caregivers may not be addressed thoroughly. The possible limitation of the two personal and powerful case study articles by Holmberg[18,19] could be the potential for lack of trustworthiness. The author makes a statement to address this effect, and readers could be assured that trustworthiness is most likely not an issue.

Many of the studies in Table 4 focused on the experience of the dying process in various settings. A main theme in the studies was the desire for family caregivers to be a part of the dying process and death. In the study by McGrath,[20] family caregivers exhibited the need to be present and a partner in the care of their loved one at EOL. Steinhauser et al[21] found that family members needed communication regarding preparation for EOL, which empowered them to go on in their role. Involvement in the light and dark was the main theme in two studies by Andershed and Ternestedt.[22,23] Involvement in the light was described by family members as being informed about their loved ones condition, needs, and having a trusting relationship with staff. Involvement in the dark is the opposite and includes family feeling unacknowledged by staff. These studies support the importance of having a good relationship with patients and their families, having effective communication, and meeting caregiver needs. Many of these studies overlap in the main focus areas under review. A distinction can be made between patients who die while in a formal hospice program and those who do not[24] and the quality of deaths that take place in the home setting or a facility.[23,25] A potential limitation, as identified in the previous section, is recall bias, because many of the articles collect data from family caregivers after their loved ones' death.[23,26,27] Another limitation for this group of studies could be the limited generalizability to other samples, because many of the samples were small with mostly female participants.

Some specific factors, such as recall bias, unpleasant experiences with the dying process, and use of one-sided samples (nurses only), have been identified throughout the previous section in regards to methodological weaknesses that affect the strength of the research. Advanced cancer was by far the most prevalent terminal condition in most studies, which for this article is not necessarily a limitation, because most patients who receive palliative and EOL care do have cancer. It is a limitation in the fact that results cannot be generalized to patients who are dying from congestive heart failure, chronic obstructive pulmonary disease, or Alzheimer's disease, because those illness trajectories often are different. Another limitation could be lack of rigor and credibility in some of the qualitative studies in this article. Some researchers failed to describe data collection and analysis techniques in depth. In qualitative research critiques, this is a crucial aspect in judging the credibility of the work. Some researchers failed to use member checking, auditing, or analysis by more than one researcher separately before merging commonalities. Finally, most study participants in all categories were female, both in the sample of nurses and family caregivers. This limitation may reduce overall generalizability to the male population.


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