The purpose of this article is to describe origins of indecisiveness in family members of critically ill patients who are faced with end-of-life care (EOLC) decisions in critical care and explore ways of empowering family members in making EOL decisions for their loves ones. Indecisiveness of family members was identified as nurses' greatest frustration in dealing with family members at ELC.1 Studies in the literature have identified several shortcomings in communication between the family and the physician in optimally addressing the families' needs that are essential to the decision-making process and in not adequately facilitating family involvement in the decision-making process.2,3 This article seeks to explore several questions related to these issues. (1) Has a portion of the population of families faced with EOLC decisions for the critically ill patient, when the patient is unable to make decisions, been oppressed, and why? (2) Can this oppression be traced to the traditional medical model whereby care has historically tended to be orchestrated by the healthcare provider as opposed to being patient (and or family) centered? (3) Do family members of critically ill patients have sufficient voice or is there a degree of coercion that takes place in making EOLC decisions for their loved ones? (4) Are healthcare professionals sufficiently delving into the personal belief systems of the patient and family to assist families in the decision-making process that could result in more favorable patient and family outcomes? (5) Is there an adequate documentation of the data collected from families that aid in the formulation of EOLC decisions for the critically ill?
The American Association of Colleges of Nursing (AACN) policy statement on peaceful death states that "The United States is facing the realities of an aging population, a recognition of the limits and inappropriate use of technological resources, and concerns about the capabilities of healthcare providers" (AACN Web site, accessed November 20, 2007).4 The concern of the AACN in conjunction with the International Council of Nurses is related to an increase in suffering and expenses associated with dying that may be prolonged unnecessarily by technology. Technology may be changing the trajectory of the dying experience. Although its positive effects are innumerable, at times, technology may be adversely contributing to the right of every individual to a humane EOL experience. When patients are incapable of making their own decisions, families are often left feeling burdened, having to make complex and cumbersome choices. There is a growing awareness for the urgent necessity to more thoroughly address the needs of dying patients and their families in critical care.
FAMILY EOLC DECISION MAKING
The need for improved decision making in the intensive care unit (ICU) is well documented in the literature.2,5,6 Healthcare professionals play a vital role in assisting patients and families with EOLC decisions. These decisions have become increasingly intricate and complicated for families with the advent of life support in the last half of the 20th century.
Background and Significance
Technology has provided the means to counteract many diseases and has saved countless lives; however, simultaneously, families are faced with challenging decisions involving complex means to prolong life with, at times, limited resources to comprehend the possible futility of life-sustaining treatments. "Family is defined as any significant other who participates in the care and well-being of the patient."7(p827) As cited by Downey et al in 2006, "[f]amilies need assistance with their own physical and emotional needs, support for their decisions, and help understanding patients' conditions, treatment options and likely course."8(p569) When inappropriate decisions are made, families suffer, and maintaining the dignity of the patient is in jeopardy.
Transfer of Clear and Accurate Information
Both nurses and physicians have identified end-of-life decision making as the most frequent ethical issue that they encounter in caring for the critically ill.9 The administration of aggressive care, whereby the patient is not expected to benefit from that care, produced the highest level of moral distress in critical care staff nurses.10 If aggressive care is being administered to critically ill patients that nurses recognize as distressful or inappropriate, perhaps families are not being comprehensively informed and adequately engaged in the decision-making process. The transfer of more clear and accurate information from the healthcare team to the family could potentially diminish such adverse occurrences. The role of the critical care nurse has evolved over time to include the responsibility of articulating to patients and families information that will guide them in EOLC decisions. The American Association of Critical Care Nurses' public policy statement states that the role of the critical care nurse is to "respect and support the right of the patient or the patient's designated surrogate (family member) to autonomous informed decision making."4 This can be a foreboding task for critical care nurses to ensure that families are well informed.
Origins of indecisiveness related to decision making by family members may be due to families not fully understanding information related to life support, having inadequate information related to patient's prognosis, and not accepting poor prognoses.11 Conflict is common during the intense process of arriving at decisions that facilitate family satisfaction. In some cases, the healthcare providers and family members may disagree about EOLC.8,12
Active Family Involvement in Decision Making
At the Challenges of EOLC in the ICU: Statement of the Fifth International Consensus Conference in Critical Care in 2003, the executive summary concluded the following strong recommendations for research to improve EOLC: "[r]espect for patient autonomy and the intention to honor decisions to decline unwanted treatments should be conveyed to the family. The process is one of negotiation, and the outcome will be determined by the personalities and beliefs of the participants."13 Thelen14 emphasizes studies that show that families want to be actively involved in making EOLC decisions early on in the patient's course. Families can be instrumental in facilitating the move from aggressive life support to palliative care models by taking a proactive approach.15,16 There is a need, however, for clinical studies measuring families' perceived obstacles to disclosing personal information to healthcare providers in relation to EOLC decisions. Families may not be aware of what "hidden" information can be used in the decision process, therefore, the need for innovative data collection tools and the need for nurses to assist in the overall empowerment of family decision making.
Empowering Families Through Improved Communication
There needs to be an organized method of gathering and tracking patient and family personal information related to EOLC decisions across the disciplines if nurses are to intentionally empower families in the ICU milieu. There is also a need for further research in the development of such methods.
Are certain groups of families oppressed in their opportunity to overtly voice their opinions, values, and beliefs related to EOLC choices? Involving families in patient care conferences is an excellent medium by which family voice is facilitated, thereby strategizing the improvement of collaborative coordination of care.17 This interdisciplinary approach involving the physicians, intensivists, staff and advanced practice nurses, a social worker, a chaplain, and others is conducive to an open exchange of ideas across the disciplines. Families may feel oppressed in the ICU environment because of several factors relating to ethnic origin, education, class, economic status, gender, and lack of understanding of medical terminology and concepts.
Improved communication between nurses and family members centers on interaction that illuminates both parties to a heightened awareness of the patients' and families' beliefs, culturally, spiritually, socially, and otherwise, which need to be considered in the EOL decision-making process. This involves facilitating a certain comfort level for families, building trust, and ensuring that the nurse has sufficient time to spend with families to build rapport. It may also require a definitive tool whereby the nurse is guided in an interview/questionnaire process with the family. This extensive data-gathering role may be unrealistic for the staff nurse in terms of time constraints with patient load responsibilities and may require an advanced practice nurse or the innovation of an EOLC nurse specialist role.
COMMUNICATION METHODS
There is a well-documented need for improvements in the communication methods between the patient, the family, and the healthcare team at EOL.18 In a study that evaluated the surveyed responses of 861 critical care nurses, members of the American Association of Critical Care Nurses, many of them did not think that "good deaths" were routinely possible in an ICU. "Many deaths nurses have witnessed in ICUs were less than ideal because of inherent problems with the intensive care environment (created to save lives)[horizontal ellipsis] problems with communication between physicians' and patients' family members."5(p43) There exists a need for additional empirical and quantitative studies related to facilitating frameworks within which families are free to disclose who they are. Empowering patients and families at end of life can be a daunting task. Explicit communication is absolutely vital to the inception of empowering patient and family wishes at EOL.
End-of-life care planning is often a long process of negotiation, whereby patient and family needs are addressed, met, and renegotiated based on changing needs. Daily ongoing discourse is necessary to identify these changing needs. Decision making is often an arduous and time-consuming process that involves not only informing the patient and family but also gaining insight from the family regarding family dynamics and their identities, both individually and in a group, so as to guide them through the necessary decisions. There is significant importance in the healthcare team's responsibility to gather adequate and detailed information from the patient and family related to their moral convictions, values, cultural background, and spiritual belief systems. A systematic gathering of this information assists families themselves, through a discovery continuum, in processing the data relevant to the patient, thus enabling them to make the necessary contextual decisions unique to their loved one's situation. This data bank of information is not like the symptoms that one gathers in the case of a patient with acute coronary syndrome. Decision making in EOLC is difficult to adapt to an algorithm that is possible for a patient with chest pain.
Organized Documentation
Several studies reflect the importance of listening to families, as it results in the lessening of their long-term adverse psychological effects.14,19-21 The information gained while listening needs to be organized and documented. There is a need for research in the development and use of tools used for purposes of gathering and documenting information from the family that will then assist the family, ultimately in collaboration with the healthcare team, through the EOLC decision-making process. Current documentation of information from the family is somewhat fragmented and, at times, largely by word of mouth among the disciplines. This interdisciplinary discourse can, at times, be like "playing telephone" whereby facts are skewed, misrepresented, and misinterpreted. Electronic medical records could serve as an interdisciplinary means of gathering, organizing, and documenting data from family members related to the patient (who at the time is unable to speak for himself or herself).
EOLC TERMINOLOGY
Healthcare professionals' preoccupation with technological terminology is a factor that can impair communication with families in the critical care environment.22 Terminology such as everything done, partial code status, and no code tend to be ambiguous and confusing for many families. Family members are frequently asked if they want everything done. Many families may think they want everything done, but they do not fully understand what everything or the terms life-saving measures really mean nor understand what treatments are appropriate for their individual situation.11 The use of do not resuscitate terminology may cause families to experience guilt over not doing everything possible to maintain the life of their loved one.
Another obstacle to providing EOLC to dying patients and their families in Kirchhoff and Beckstrand's11 study (n = 199) was providing life-saving measures at families' request although the patient had signed an advance directive requesting no such care. This significant finding may be a result of family's lack of understanding of the terminology related to EOLC regarding the appropriate use and/or termination of life support systems. Significant studies have suggested that families are overly optimistic about the outcomes of cardiopulmonary resuscitation (CPR).2,23 These studies point to the direction of a communication breakdown that may in part be related to obstacles in the use of adequate terminology that families are able to comprehend.
Do Not Resuscitate
The End-of-Life Nursing Consortium is a national educational initiative to improve EOLC in the United Sates that began in 2000. In a recent training conference for critical care nurses, there was a discussion regarding the recommendation for changing the terminology from do not resuscitate to limitation of life-sustaining treatments. This may very well facilitate a more accurate delivery of information from nurse to patient and/or family. Advances in technology have placed the critical care nurse in a pivotal position to guide patients and families in decisions related to the withholding and withdrawal of life support. Dahlin and Giansiracusa24 cite studies supporting that families are less likely to opt for CPR knowing that almost no patients with severe, multiple, chronic illnesses who receive CPR in the hospital survive to discharge.25,26 If life-sustaining treatments are limited, there needs to be clarification to families that the patient will not be deprived of comfort measures or other collaborative interventions determined as beneficial to the patient.27
Open-Ended Communication
There is much in the literature related to EOLC communication techniques. In the information-gathering process, the nurse is encouraged to use open-ended questions with the family.24 Examples of these questions can be found in Table 1.
A shared decision-making model is one that includes patient/family self-determination, balance of objective and subjective information, process orientation, narratives, focus on understanding, and interpretation of informed consent.28 This model is one in which families not only consent but also agree with the treatment plan. Provision for narratives between the family and healthcare providers facilitates a deeper level of informed consent whereby the family can move past making a decision that they feel coerced in making to arriving at decisions that they are at peace with. The terminology needs to be open, honest, and easy to understand. For example, "I am sorry to tell you but in spite of our efforts, your mother is going to die. In this circumstance CPR is not going to help, but we will keep your mother as comfortable as possible." Appropriate terminology is the key to effective communication, along with caring nonverbal body language, listening skills, and presence.
Case Study
Mrs C was a 35-year-old woman who came into the intensive care unit with pneumonia. She had a history of severe gout, diabetes mellitus, and acute renal failure. She also suffered from debilitating, severe, and chronic pain as a result of the gout. Her condition quickly worsened, requiring her to be mechanically ventilated, and eventually, a tracheostomy became necessary. Mrs C had been separated from her husband for quite some time. It became more and more difficult to wean Mrs C from the ventilator. After several attempts at weaning and several resuscitations during an approximately 4-month period, Mrs C became unresponsive to verbal and eventually painful stimuli. She was on hemodialysis, and it was difficult to maintain her blood pressure during dialysis treatments without resuscitative efforts. Her husband felt that Mrs C would continue to want "everything" done. There was no written advance directive in this case.
She had several open and nonhealing wounds and decubiti and eventually, as a result of a thrombosis, developed necrosis of the toes and right foot. The surgeon did not feel that she would survive the amputation, which would have been necessary to prevent gangrene. In addition, the nasogastric tube had been in place long enough that a gastrostomy tube was necessary. There were several difficult decisions for Mr C to face.
Several of the physicians and nurses had attempted to speak with Mrs C's husband regarding limitation of life-sustaining treatments. However, Mr C expressed difficulty in being able to withdraw treatments. Mrs C also had parents, who, although they had not been to the hospital to visit her, had expressed to her husband that they wanted everything done. This made it additionally difficult for Mr C to make end-of-life care (EOLC) decisions for his wife. A family conference was scheduled with the intensivist, the staff nurse, the clinical nurse specialist (CNS), the social worker, the chaplain, and several extended family members.
The night before the conference, the critical care CNS sat down with Mrs C's husband and explored with him his reasons for wanting to continue his wife on life support. Through the nurse's extended effort to be concerned for all that Mr C was feeling, he was able to entrust his feelings to the nurse. In this openness of communication, it became evident that Mr C was burdened by having to make the EOLC decisions for his wife. He had guilt feelings related to the lack of forgiveness in their marital relationship and felt that God would not forgive him if he did not continue to do what his wife would perceive as "everything possible" to sustain her life. It also became evident that Mr C associated a "do not resuscitate" order with giving up on his wife. He expressed a fear of not doing the "right thing" in changing her full code status. Mr C stated that he hoped that if the nurses and physicians continued to resuscitate his wife and maintain life support, eventually, she would gain enough strength to pull through. He also stated feeling overwhelmed with having to make the EOLC decisions.
On the basis of this interaction between the CNS and Mr C, the interdisciplinary team went into the family/patient care conference with more in-depth information. The physician opened with an explanation of the multiple dilemmas that the medical staff was facing. Mr C was advised of the probable futility of continued life-sustaining treatments. The chaplain, the nurse, and the social worker were able to address Mr C's guilt feelings in reference to his faith, his beliefs, and his marital relationship. Avenues of resolution were explored. He was able to make a decision to change his wife's code status to medications only, but she remained on mechanical ventilation. It was explained to Mr C that the healthcare team was very sorry for what both he and his wife were going through and that continuation of life support was not an effective option at that point. It was also explained to Mr C that the healthcare team wished that they could cure Mrs C, but they were not able to do this; however, they would continue to make her as comfortable as possible. After the conference, a prayer was offered to Mr C by the chaplain and the nurse. He accepted and appeared comforted by this intervention.
During the days that followed, the healthcare team continued to affirm to Mr C that withdrawing life support would not be giving up on his wife, rather it could be viewed as preserving her dignity. The following week, Mr C decided to withdraw life support, thus removing her from the ventilator. Her parents and estranged sister, who had not seen Mrs C at all during her lengthy hospitalization, came to make their amends with her and say "goodbye." After their time together and immediately before the withdrawal of the ventilator, Mrs C's heart rate dropped, and she peacefully died. Mr C was at peace with his wife's EOLC events as they occurred and felt that overall, the healthcare team had met his family's needs at this most difficult time in his life.
CONCLUSION
The facilitation of accurate and thorough communication between healthcare professionals and the patient's family is essential for appropriate decision making in the critical care setting at EOL. There are limitations to prescriptive models of decision making. Overgeneralized models are not based on situational and contextual patient and family characteristics, which are unique to every individual and family and may lend themselves to family indecisiveness. Other factors contributing to indecisiveness among families in making EOLC choices are feelings of oppression, lack of information, and lack of understanding of life support terminology. See the case study for an example of empowering family members in end-of-life decision making in the ICU.
There is a need for additional empirical and qualitative research, through methods of retrospective inquiry, narratives, interviewing, and chart review. Progress can then be made in empowering families to make EOLC decisions for their loved ones without coercion that more accurately reflect patient and family wishes. Information needs to be conveyed with great clarity, sensitivity, and detail from healthcare providers to families. The innovation of more definitive and comprehensive tools used in gathering, tracking, and documenting information obtained from families in making EOLC decisions has the potential to open lines of communication among the interdisciplinary healthcare team.
References