Quality Improvement in End of Life Care

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Family members of patients in the intensive care unit are an intricate piece in the end of life decision making process. However, families are not always as informed or involved as they would like to be. There are a multitude of articles relating family satisfaction and effective communication for high quality end of life care and yet, families are often left with feelings of guilt and unanswered questions. Family involvement in communication, decision making, and cultural variations are discussed. Common barriers noted in the research will be brought to light in order to create an intensive care culture that assesses family needs and supports families as a key component in high quality, family-centered, end of life care.

The purpose of this review is to identify areas for improvement as well as barriers to high quality end-of-life (EOL) care and the inclusion of families as an integral part of the decision making team. An important aspect to evaluating quality EOL care is whether the patient's family was satisfied with the care their loved one received (Brazil, K., Cupido, C., Taniguchi, A., Howard, M., Akhtar-Danesh, N., & Frolic, A., 2013). This is an important topic for consideration because families often cite communication deficiencies as a source of dissatisfaction with care provided in the hospital setting (Downey, Engelberg, Shannon, & Curtis, 2006). Additionally, approximately 2.4 million Americans die each year, with one in five deaths occurring during, or shortly after, a stay in the Intensive Care Unit (ICU) (Wiegand, Grant, & Cheon, 2013). The number of deaths in the ICU is likely to rise as the population ages. The Cumulative Index to Nursing and Allied Health Literature (CINAHL) was searched using dates 2003 - 2013, and keywords: family, intensive care, critical care, end of life, and communication.

Communication

The landmark, Study to Understand Prognoses and Preferences for Outcome and Risks of Treatment (SUPPORT), done in 1995, heightened interest in the need to improve hospital care for dying patients (Ahrens, Yancey, & Kollef, 2003; Billings, 2011; Brazil, et al., 2013; Boyle, Miller, & Forbes-Thompson, 2005; Norton, Hogan, Holloway, et al., 2007; Tschann, Kaufman, & Micco, 2003). SUPPORT identified poor communication between physicians and patients on preferences for care, poor pain and symptom management, and the continuation of aggressive therapy without sufficient attention to palliation in the face of almost certain death, as shortcomings in hospital care (Brazil, et al., 2013).

Communication is a key element to providing high quality EOL care. Despite widespread acceptance that communication among patients, families, and the health care team is important to providing high quality care, research suggests that communication about EOL care is often limited (Ahrens, Yancey, & Kollef, 2003; Billings, 2011; Brazil, et al., 2013; Cherlin, et al., 2005; Jacobowski, Girard, Mulder, & Ely, 2010; Kjerulf, Regehr, Popova, & Baker, 2005; Norton,et. al., 2007; Wiegand, Grant, & Cheon, 2013).

Family Meetings

One method of facilitating communication among families and clinicians is holding family meetings early in the patient's admission to the ICU. As evidenced by Billings, 2011, family meetings in EOL care, when held proactively, within 48-72 hours of admission to the ICU, have been shown effective for improving family and staff satisfaction and reduced resource utilization along with decreased length of ICU stay. The family meeting provides the health care team with an opportunity to assess the family's knowledge, provide a consistent picture to the family, and plan for ongoing communication (Billings, 2011; Wiegand, Grant, & Cheon, 2013). Research shows that families are more satisfied with meetings in the ICU when they have spent more time talking and the physician talked less (Billings, 2011; Norton, et. al., 2007). Early family meetings can provide an opportunity for the family members to talk about their fears of death and how they are coping with it (Billings, 2011). Family meetings help the family begin to prepare for a possible poor outcome and start the grieving process (Wiegand, Grant, & Cheon, 2013).

Palliative Care Consults

Similar results were noted regarding early palliative care consults as with the initiation of early family meetings. According to Norton, et. al., 2007, patients who had been identified as having a high risk for death received an automatic palliative care consult on admission to the ICU, in order to provide the ICU team with recommendations for treating symptoms and creating plans of care. This resulted in decreased length of stay in the ICU, and had no effect on the mortality of the intervention group versus the usual care group (Norton, et. al., 2007).

Family Rounds

Two of the studies reviewed, Ahrens, Yancey, & Kollef, 2003; Jacobowski, Girard, Mulder, & Ely, 2010, attempted an interdisciplinary team approach to meeting the family's need for communication. In the first study, families attended daily rounds with the medical team discussing the plan of care. There was improvement of satisfaction with communication but not overall satisfaction with care provided (Jacobowski, Girard, Mulder, & Ely, 2010). The second study utilized a team of only a physician and a clinical nurse specialist, who would round together daily on patients determined to be at high risk for death. Families were provided with the same information as the first study, medical updates and a plan of care for the patients, however, the results were different. There was increased satisfaction as well as decreased length of ICU, hospital stay and a lower incidence of cost (Ahrens, Yancey, & Kollef, 2003; Boyle, Miller, & Forbes-Thompson, 2005).

Further research as to the families' comprehension and knowledge during rounds in the first study, as well as whether another nurse with skills in communication could replicate the results of the second study remains to be done.

Family Perceptions

In the research put forth by Kjerulf, Regehr, Popova, & Baker, 2005, in a Canadian study, family members who perceived that physicians did not spend enough time answering the family's questions and were dissatisfied with access to information, and thought their family member's pain was not controlled adequately. Results of a Norwegian study by Lind, Nortvedt, Lorem, & Hevroy, 2012, showed that if the family was not present for health care discussions with the patient, they had the perception of exclusion, and felt they were unable to be sure if the patient was informed properly. Both of these studies show that in order for the family to have a sense of trust of the health care team they need to be updated on changes in condition as well as the plan of care for the patient. Perception is subjective and must, therefore, be researched further to test the generalizability of these studies.

As evidenced by the above research, information sharing and effective communication can be associated with increased family satisfaction with EOL care provided, decreased length of stay in ICU, and a decrease in resource utilization.

Decision Making

Having a family member in the ICU has been shown to be extremely stressful for families. Only 5% of ICU patients are able to participate in the decision making process (Wiegand, Grant, & Cheon, 2013), which puts the burden of decision making onto the family. Family centered care is essential to providing high quality EOL care in the ICU (Institute for Patient- and Family-Centered Care, 2010). The International Consensus Conference in Critical Care, the American Thoracic Society, the American College of Chest Physicians, and the Society of Critical Care Medicine all recommend a shared decision model where consensus is sought between the patient's values and the best medical opinion of the multidisciplinary team (Wiegand, Grant, & Cheon, 2013). It remains evident in the literature that there is still need for improvement on including family members in the care of the patient in the ICU.

Informal Family Roles

Recognizing and understanding the roles that family members play within the family unit during a critical decision making time, is important to facilitate more effective communication and consensus among family members (Quinn, et al., 2012). In the study done by Quinn, et al., 2012, certain informal roles were identified during family meetings where these complex roles emerge. These roles were identified early on admission to the ICU, and resulted in reduction of conflict among family and clinicians.

The process of making EOL decisions is strongly influenced by family dynamics and often occurs within a decision making framework (Wiegand, Grant, & Cheon, 2013). In order to understand and support the process of effective family decision making, the health care team must understand the informal family roles.

Lack of Inclusion

Another factor noted in the research, as to why families are dissatisfied with care provided, is a lack of participation in the patient's care (Lind, Nortvedt, Lorem, & Hevroy, 2012; Wiegand, Grant, & Cheon, 2013). Some families describe wanting to be involved in the decision making process, yet they are not always included to the level they perceive they should be (Wiegand, Grant, & Cheon, 2013). This correlates to Lind, Nortvedt, Lorem, & Hevroy, 2012 findings that the burden felt by families is a result of the lack of inclusion, insufficient information, and openness from the health care team.

Cultural Competence

The cultural variations of a particular group of people determine how they make sense of life and death (Bullock, 2011). Knowledge and awareness of cultural values, attitudes, and behaviors can assist the health care team in avoiding stereotypes and biases, while creating positive interactions with patients, which leads to increased satisfaction (Bullock, 2011). This area of cultural competence, specifically related to EOL care, needs more research regarding the impact of cultural competence on patient and family outcomes.

Barriers

Common themes emerged from the literature regarding possible barriers to family satisfaction and the provision of high quality EOL care in the ICU.

Physical Environment

The ICU environment is mainly created for utilizing high-tech medical equipment and is not designed for holistic family-centered care (Fridh, Forsberg, & Bergbom, 2007). The presence of machines, tubes, wires, and the constant sound of alarms can be an impediment which families are faced with in the ICU (Fridh, Forsberg, & Bergbom, 2007). Further research could be done for a more family-centered and home-like hospital environment, much like the changes that most hospitals have made for childbirth areas (Fridh, Forsberg, & Bergbom, 2007).

Lack of Training

Many nurses and physicians have difficulty with EOL discussions because they are uncomfortable with death and lack the communication skills to facilitate an effective EOL conversation. A study done by Friedenberg, Levy, Ross, & Evans, 2012, compared perceived barriers to EOL care by level and training of residents, fellows, and attending physicians. This study demonstrated that appropriate training for EOL care is lacking. Almost 40% of respondents reported inadequate clinician training in EOL communication as a barrier to providing high quality EOL care. It is essential for health care teams to examine and understand their own discomfort with death (Boyle, Miller, & Forbes-Thompson, 2005). Further research on communication skills training programs, related to patient outcomes, should be done.

Ineffective Communication

Effective communication is a skill that requires training and practice in the same way any technical skill would. In a study done by Cherlin, et al., 2005, it was found that differences between what physicians think they are communicating and what family members hear exist. This type of ineffective communication about EOL issues could result from the physician's lack of discussion as well as the family's ambivalence about what they wanted to know, as well as, difficulty comprehending and accepting "bad news" (Cherlin, et al., 2005). Another study suggests, patient presence effects the discussion during family meetings. When patients were present there was decreased communication concerning prognosis, and what symptoms dying patients might experience (Dev, et al., 2013). Further strategies for optimal physician-family communication should be assessed.

Conclusion

The consequences of unmet communication needs for families of ICU patients include dissatisfaction, lack of understanding, unmet goals of care, increased feelings of burden, lack of trust, and conflict with the health care team (Boyle, Miller, & Forbes-Thompson, 2005). The research indicates that addressing communication problems between the health care team and patient families may improve the overall satisfaction with end-of-life care.

Having some insight of informal roles that emerge in families during stressful situations is helpful. By including family members in the decision making process they having a sense of inclusion, which the literature pointed at as an area of importance for high quality end-of-life care. The research reviewed areas for improvement as well as future research possibilities in relation to increasing family satisfaction and patient outcomes.

Providing family-centered care is important when caring for patients in the ICU. Preventing distress and promoting comfort during the dying process is a final gift the health care team can give to patients. Despite their loss, families may leave the ICU with positive memories of care and comfort if family needs are adequately addressed as outlined in the research.

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