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

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

Disclosures

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

In This Article

Methods of Review

A systematic review of the literature was performed to identify primary research studies in English that focused on family caregiver needs in the context of terminal illness and communication between the nurse and family within that context. Inclusion criteria were listed as the following:

  1. Articles that examined and identified family caregiver needs during terminal illness, particularly from advanced cancer.

  2. Articles that focused on communication between nurses or healthcare providers and patients/families in EOL care.

  3. Articles that examined the nurse-patient relationship in the context of palliative/EOL care.

  4. Articles that described the experience of dying in EOL and hospice care.

Exclusion criteria were listed as the following:

  1. Articles that focused on pediatric population younger than 18 years of age for both patient and family caregiver.

  2. Articles that focused only on the initial communication regarding terminal illness and poor prognosis.

CINAHL (1982 to first week of November 2006), Ovid Medline (1966 to present), and PsychInfo (1967 to first week of November 2006) were searched to find relevant literature in a variety of disciplines. Databases were searched using combinations of keywords, such as nurse-patient communication, nurse-family relations, end-of-life care, hospice care, terminal care, palliative care, and death and dying. Initially, there were no limits set for the search, which resulted in a total of 440 documents. This set was then limited by English language and age older than 19 to 44, 45 to 64, 65 to 79, and 80 and older. The age limitation was for the purposes of excluding articles focused on the pediatric population. Although communication at the EOL is an important topic to explore for all ages, the communication surrounding pediatric patients and their families has different aspects involved and should be the focus of a review in its entirety.

The search then yielded a total of 115 documents whose abstracts were hand searched for relevance based on the inclusion and exclusion criteria. Relevant sources were basically categorized in three domains: (1) family caregiver needs in EOL care, (2) communication in EOL care, and (3) the caregiving experience at the very EOL. This categorization yielded a total of 41 articles. Within the specified domains, family caregiver needs articles were narrowed to ones relating to communication needs. Communication articles were then subcategorized for nursing, medicine, and patient/family. The caregiving experience articles were narrowed to those focused at the very EOL, late in the illness trajectory. The following articles were excluded for the following reasons: two articles whose focus was on the palliative education/training for nurses, four articles that examined communication focused at prognosis early in illness trajectory, eight articles that were not primary research, and four that did not fit either criteria well. The second review further narrowed the search to 23 peer-reviewed primary research articles found in nursing, medical, and social science journals. The final 23 articles and their reference lists were thoroughly examined and snowballed for further articles. Through this process, seven more relevant articles were obtained and added, which made the final total 30.

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