CASE STUDY
Claire, a clinical nurse specialist (CNS) on a cardiac surgery team, was conducting clinical rounds on the postoperative patients from the previous week. Sophia, a 76-year-old patient, came into the hospital early last week for a scheduled mitral valve replacement and coronary artery bypass grafting. During induction of anesthesia, Sophia had a cardiac arrest. After surgery, Sophia was unresponsive to any verbal stimuli. She had had an ischemic stroke and was ventilator dependent, with vasoactive medications needed to maintain her blood pressure. Claire inquired among the nursing staff as to whether advance directives were in place for Sophia. There was no documentation available in Sophia's medical record. The staff was unsure but did state that the youngest of the patient's 3 children visited over the weekend and argued with the other children whether their mother would want to be kept alive on a ventilator. Sophia's husband was deceased.
During rounds, the cardiac surgeon reviewed Sophia's magnetic resonance imaging results and instructed Claire to obtain consent for a tracheostomy and a feeding tube. These would be needed as she felt she was not going to recover and required long-term care placement.
INTRODUCTION
The goal of advance directives focuses on 2 principles: the individual's right to die and death with dignity. Living wills, healthcare proxies, durable powers of attorney, and do-not-resuscitate orders are all tangible documents formulated from discussions of advance directives.1 Advance directives allow individuals to express how much or how little intervention should be done when the ability to make these decisions no longer exists. Ideally, each individual should have an advance directive to communicate his/her plan of care in the event that he/she cannot speak for themselves. Each person should name a surrogate decision maker or someone trusted to make healthcare decisions according to wishes previously outlined by the individual.2 Having both advance directives and a surrogate can prevent overuse of medical resources, can decrease family burden, and prevent an undignified death. Although death is inevitable, it is not often openly discussed in this country. People are usually present oriented and do not like to focus on future events that may occur. Hesitation to discuss death makes it extremely difficult to emphasize the importance of having a plan of care for end-of-life situations. The reality is approximately 20% of Americans have completed advance directives.3 Thus, many patients requiring hospitalization do not have advance directives or surrogate decision makers. This creates a serious challenge for healthcare workers who need to know the patient's wishes to incorporate them into a plan of care.
The Joint Commission (TJC), the national organization certifying hospitals for adherence to quality standards, supports the patient's right to make decisions about his/her care. The Joint Commission requires hospitals to determine if every patient has advance directives or requires the hospital to provide assistance if the patient wishes to complete one.4 Unfortunately, hospitals are not very successful in obtaining advance directives from patients. The process to obtain them is often initiated by an untrained or uninterested employee, such as an administrative aid at the check-in desk in the emergency department, for example. On admission, if a patient denies having an advance directive, he/she is usually given a complicated form with little to no explanation of his/her choices or the impact of his/her choices.
Problems with the process in hospitals go beyond system issues such as who hands out the advance directive forms. Issues also exist with the nursing staff stemming from inadequate education, lack of time, or lack of confidence to facilitate these discussions. Patients have their own personal issues complicating the advance directive process. Patients are less likely to complete these forms in hospitals if the environment is stressful, if no one takes the time to explain the significance, or if no one initiates discussion of their options. Within the hospital, the process is disjointed, inconsistent, and suffering from significant gaps in transitioning a patient's wishes into his/her actual plan of care. Hospitals are in desperate need of a change in the delivery of the advance directive process. Hospitals are also in need of someone with knowledge of advance directives, expert communication skills, and strong interpersonal skills to communicate the patient's wishes. The CNS, who is often called upon to lead system change, is someone who can communicate the patients' wishes by improving the process to obtain advance directives. With knowledge of both the current barriers to completing advance directives and key components of successful programs, the CNS can act as a change agent within the hospital system to improve this important process.
REVIEW OF LITERATURE
Advance Directives
Advance directives include having a healthcare plan for the future. Despite national efforts to educate the public, there has been little increase in the number of advance directives obtained over the last 15 years.5 Females, whites, older individuals, those privately insured, those with higher education, and individuals with chronic illnesses are more likely to have them.6-8 Lack of communication with physicians was found to be a barrier to completing advance directives, but fixing physician communication alone is not the answer. The landmark SUPPORT trial found that improving patient-physician communication about advance directives was insufficient and that a more proactive individual and societal effort was needed.9 Other common barriers to obtaining advance directives are an individual's lack of time, lack of desire, and lack of understanding surrounding the importance of them. Some additional barriers, as illustrated in Table 1, are very personal and individual, such as fear of dying and feelings of uncertainty about the future. This makes obtaining advance directives from certain patients in the hospital very challenging.
Historically, when faced with the challenge of how to work through patient's feelings of uncertainty, fear, and anxiety, healthcare workers attempted to improve the process by focusing their efforts directly on patients. However, most attempts that focused only on improving patient understanding have failed. In hospitals, there is a real need for a change in the process that extends system-wide. The challenge is improving not only the patient's understanding of advance directives, but also the understanding of the nurses and the organization as well.
A program currently stressing the importance of system change is the Respecting Choices program. Respecting Choices is committed to organizational change and professional development as opposed to just focusing on changing the patient.10 Originating in 1991 in LaCrosse, Wisconsin, Respecting Choices centers around advanced care planning, described as end-of-life decision making. In advanced care planning, interviews with patients are held with the surrogate present to determine the patient's preferences of care while improving the understanding of the surrogate.11 Trained individuals conduct these interviews in a variety of settings, both in the hospital or the community, to determine the patient's wishes so they can be accurately entered into the patient's medical record. The program integrates training, practice, and policy development in an organization, so advanced care planning becomes a routine component of every patient's care. Some of the basic objectives of Respecting Choices are to initiate conversations about advance care planning, work with the patient to facilitate planning, and respectfully follow through with the plans.10 From April 1995 to March 1996, advance directives existed for an unprecedented 85% of patients who died, with 96% of those documents found in the medical records at the Gundersen Lutheran Medical Center.12 A comprehensive training course was created and marketed to enable other organizations to tailor the Respecting Choices program to their particular needs and is available through the Gundersen Lutheran Medical Center Web site. The program is currently used in various states, and research has illustrated the success of the program.10 Respecting Choices has taught us that the advance directive process is not just entering a signed document into a patient chart or medical record. It goes beyond working only with the patient. The main focus should be changing to a systems-based approach to obtain advance directives with the addition of more professional education. This article suggests that this change in focus can be initiated and carried out by a CNS.
Clinical Nurse Specialist as Change Agent
To initiate organizational change in the advance directive process, the CNS can use basic core competencies.13 These competencies, as illustrated in Table 2, reflect the abilities of the CNS to identify issues, develop new programs, and evaluate the program's effectiveness and its outcomes. With these skills, the CNS can facilitate an increase in the number of advance directives obtained and increase the provision of dignified, self-directed, quality patient care provided. The CNS is educated to assess, plan, and evaluate issues affecting 3 spheres of influence: the patient sphere, the nursing sphere, and the organization sphere.13 Within these 3 spheres, the CNS can be proactive and has the skills to positively influence change.
To positively influence change in an organization and create lasting change in the advance directive process, the CNS needs to follow a model for influencing a change in behavior. The 6-Source Influencer Model, based on the book, Influencer: The Power to Change Anything, by Patterson et al,14 presents an approach for the CNS to use to lead organizational change. The 6-Source Model describes the role of the influencer, in this case, the CNS, and how he/she can draw support to influence change from personal, social, and structural sources.15 The 6 sources are as follows: (1) personal motivation or making the undesirable more desirable, (2) personal ability or practicing to surpass your limits, (3) social motivation or harnessing peer pressure, (4) social ability or finding strength in numbers, (5) structural motivation or designing rewards and demanding accountability, and (6) structural ability or changing the environment.14 This model assumes that every problem has a solution and suggests that tapping into motivation and ability within the 3 domains can create a lasting change in behaviors. Ideally, the CNS can act as a change agent within the 3 spheres, using the 6-Source Model to influence organizational change. In this case, the CNS will strive to change the advance directive process to one that is more comprehensive and consistently used and can more accurately reflect the patients' wishes.
ADVOCATING FOR ADVANCE DIRECTIVES
The hospital environment overloads patients with information about procedures, surgeries, and other healthcare issues. It is not surprising that, historically, a discussion about advance directives, if done at all, is incomplete, uninformative, and undocumented. In the role of change agent, the CNS would benefit from a tool outlining steps to provide a consistent, process approach to obtaining advance directives. In an effort to solidify a consistent process, the CNS can use a checklist. The steps for the CNS to follow in the patient, nursing, and system spheres to improve this process are illustrated in Table 3. The goals of the checklist are to create individual healthcare plans based on a patient's values and goals, establish a surrogate decision maker familiar with the treatment goals, and document this plan in the medical record in a way that it can be followed.16 In the system sphere outlined in the checklist, the CNS must evaluate the institution's current involvement in the advance directive process and decide how to improve upon it system-wide. In the nursing sphere of the checklist, professional development is the main focus, and meeting the educational needs of nurses is paramount. Within the patient sphere, the focus of the checklist is on building a relationship with the patient to get to the heart of what he/she would chose for himself/herself in an end-of-life situation. Although the system sphere is the suggested starting point, items from the checklist can be checked off in any order as long as all items are addressed. Applying the checklist to Sophia's case will help illustrate its usefulness to the CNS in facilitating a system-wide change in the advance directive process.
CNS Practice in the System Sphere
In the case of Sophia, no clear documentation existed in Sophia's medical record, and therefore, advance directives did not impact her patient care. Tackling system issues as outlined in the checklist will lay the groundwork for developing a new process for advance directives. With so many barriers to obtaining advance directives, this is not an easy task. When implementing a change process, leadership skills and organizational planning are required. The CNS must evaluate the stakeholders' interests, the power of the influence, and other contextual factors affected by the change.17 In this case, the CNS must decide what the hospital stands to gain from a more consistent, thorough advance directive process. Requirements from TJC coupled with the Patient Self-determination Act18 (PSDA) require documentation of status in every patient's chart whether a patient has executed an advance directive. Organizations must put the advance directive process in the forefront. If the institution does not focus much time or effort on the advance directive process, the CNS must be the influencer to facilitate a change in thinking and reemphasize the importance of advance directives.
According to the 6-Source Model for change, an important step comes from making relevant, consistent data available to groups so they see the rationale for the change.14 Presenting data explaining the PSDA and TJC requirements and regulations will make change easier to understand. Making change easier to understand for groups of people draws from the 6-Source Model's source of structural ability, in hopes that making change easy will make it unavoidable.14 Increasing the institution's awareness of the importance of advance directives is extremely important. One way to increase awareness and reemphasize the importance is to identify a champion or support person. This champion can work as a liaison and can explain the importance and real need for change in the process. This person could be the leader of a small group program on ethics, the vice president of nursing, or an influential nursing director. In Sophia's case, if the vice president of nursing acted as the champion, it is possible that the intensive care unit (ICU) manager working under the vice president of nursing would be making certain that quality checks were being performed on the unit to ensure that every patient is involved in the advance directive process.
In addition to naming a champion, the CNS must actively participate in attempts to increase awareness system-wide, both internally and externally. If current advance directive programs or committees exist, the CNS should attend the committee meetings and evaluate their effectiveness. The CNS can assemble nursing grand rounds featuring advance directives, construct and post a bulletin board in a high-traffic area with factual information, or design a Web site on the organization's intranet or home page to provide easily accessible information. To increase the institution's awareness and involvement externally, a CNS can coordinate the organization's participation within the community. Local advance directive improvement projects, such as "Someone to Trust" (STT), a multihospital consortium to improve the utilization of advance directives, exist in areas such as Chicago. Established in June 2006 and supported by the Chicago Region Advance Care Planning Coalition,19 STT adapts the Respecting Choices program to create a more comprehensive approach to advance care planning. The aim of STT was to create an advance directive representing an individual's wishes, prepare the family to make decisions based on an individual's preferences, and then ensure that it is properly documented.
Documentation of every patient's individual preferences is both challenging and vitally important to the advance directive process. An organization has to ensure that the wishes of the patient are created into actual orders that are visible in the patient record.12 Unless the documentation can be located, interpreted, and put into action by members of the healthcare team, the valuable information obtained during patient discussions cannot be used. The CNS must evaluate current documentation practices and determine the readability and consistency of forms used for advance directives. If Sophia did have an advance directive, the staff nurse would need to know where to access it and how to interpret Sophia's wishes. Once the staff nurse is aware of the existence and the content of Sophia's advance directive, the staff nurse would communicate Sophia's wishes to the cardiac surgery team to ensure that it is incorporated into her plan of care. If Sophia had an advance directive that stated she did not want to be sustained by artificial means of nutrition, the staff nurse would verify that and inform the physicians that feeding tube placement would be contraindicated based on Sophia's wishes.
CNS Practice in the Nursing Sphere
To continue the change in the advance directive process, the CNS also needs to focus on addressing the needs of nurses, as listed in the checklist. A study found that although most nurses questioned had discussed them with their family, only 16% of nurses had their own advance directives.20 With the average age of a nurse in the mid-40s, he/she may not feel inclined to obtain his/her own because he/she may not yet be considering his/her own end-of-life issues. The previously mentioned study, however, did find that 51% of those nurses had helped a family member complete them,20 which may have been for a parent. Regardless of how much they believe their elderly or acutely ill patient should have one, nurses send a contradictory message if they do not value advance directives enough to obtain one for themselves. The struggle is to influence staff nurses to obtain their own advance directives to set an example to their colleagues and their patients.
A sense of community is often fostered by the CNS within the healthcare team, particularly among nurses. This sense of community and teamwork can gain the cooperation of nurses to take a more proactive role in the advance directive process. Within the nursing community, providing an opportunity for nurses to complete their own advance directives would increase nurses' awareness and comfort level. Using the 6-Source Model, the CNS must become an opinion leader, someone knowledgeable, respected, and well connected in the organization who is giving of his/her time and experience.14 An opinion leader can pull from the source of social motivation, where people persuade others within a group to act. In this case, the CNS would influence a group of nurses on the ICU to obtain advance directives for themselves. These nurses, in turn, would motivate other staff nurses to obtain advance directives. Nurses would benefit from assistance and support from one another, which is defined as the source of social ability.14 Other colleagues can have a powerful influence on our behavior. Nurses can also have a strong influence on their patients. If a patient realizes that his/her nurse values advance directives enough to have one, the patient may be more motivated to also obtain them. Ideally, this would have a domino effect.
The other reality is that staff nurses report being uncomfortable and inadequately trained on the topic of advance directives.21 This educational assessment is also outlined in the checklist. In the case study, the staff nurse did not take any initiative to discuss Sophia's wishes with her family members. The American Nurses Association clearly states that the standard for registered nurses is to integrate ethical provisions into all areas of their practice.22 This would include advance directives. Without proper education or training, nurses may feel that discussing advance directives is beyond their scope of practice. To assess the educational needs of the staff nurses, it is important to determine their baseline knowledge, readiness to learn, and comfort level with the information. The CNS must lead discussions of staff's perception of the need for change, what will be expected of them, and how the change process will impact them, directly and indirectly.23 The CNS must also determine how much information staff want to receive. With that assessment of the learner, the CNS can collaborate with nursing staff to create a formal education course tailored to a group of nurses. The course for nurses could include role-playing, self-paced modules, group discussion, or formal teaching. In the role of teacher, the CNS would educate charge nurses, senior staff, and other nurse leaders in various areas hospital-wide. The CNS would then delegate the teaching to those who had completed the course. By developing his/her knowledge base, the CNS empowers nursing staff to become experts in advance directives and confident to answer patients' questions. Empowerment is a process that fosters competent and independent individuals who are trained to act in a situation. Another method for the CNS to enhance nurse education is to collaborate with nurses and healthcare professionals to create an advance directive task force. Training the task force allows nurses to become leaders who facilitate the process for other nurses who may not have the time or expertise to do so effectively.
CNS Practice in the Patient Sphere
To address the patient needs outlined in the checklist, it is important to keep discussion of advance care planning going throughout the continuum of care. The CNS must avoid having a 1-time discussion regarding healthcare goals, as it is ineffective.12 In the case study, Sophia's story is not unlike many others encountered in clinical practice. Sophia is a cardiac surgery patient who had not discussed advance directives with her family or her physician prior to surgery. A study conducted by Salmond and David7 in 2005 illustrated this common lack of communication. Ninety-five percent of patients in the study had never had any discussion about end-of-life care with their physician, and only half had ever discussed end-of-life issues with their families.7 Sophia's family and the CNS would have to meet in the ICU and discuss long-term options of care such as a tracheostomy, feeding tube, and facility placement. The ICU is not ideal for these discussions, as patients' individual goals should ideally be defined in a less stressful environment before admission to the ICU.24 Patient encounters in the outpatient setting are preferred for the discussion surrounding advance directives. There, the CNS can speak to the patient before he/she faces important clinical issues or events.
Patients eligible for cardiac surgery meet with the cardiac surgeon in the outpatient setting before surgery to discuss the proposed surgical procedure, along with its risks and benefits. Ideally, Sophia would be accompanied by a family member and would meet with the CNS in the outpatient setting immediately after Sophia spoke with the cardiac surgeon. The family member's presence would be valuable to Sophia because he/she could listen to the information provided while offering Sophia emotional support. The family member is also able to hear Sophia's concerns and hear her plans for her own future care. With this knowledge, the family member may be more equipped to serve as Sophia's surrogate decision maker, if asked to do so. For some patients, being unable to decide on the surrogate or proxy is a barrier to completing advance directives.3 The CNS can aid in the patient's selection of this important individual, discuss his/her responsibilities, and suggest ways to begin a conversation with a possible surrogate.12 It is important for the surrogate decision maker to be aware of the medical and nonmedical concerns of the patient, so he/she can make clinical decisions congruent with the patient's wishes.25 Being present for discussion of Sophia's goals of care could help the family member understand her medical and nonmedical concerns.
During that first discussion of advance directives, the CNS could tailor the conversation with Sophia with 2 goals in mind: (1) discuss the patient's understanding of his/her illness or cardiac issues and his/her goals of care related to surgery and (2) discuss the role of a surrogate decision maker and his/her awareness of the patient's beliefs and values. The initial outpatient visit should go beyond distributing handouts with basic facts on advance directives. A study showed that although 100% of study participants received information, only 82% reported receiving it, and less than 50% understood the information.7 Simple distribution of information is clearly not the answer and will not produce the desired increase in the number of advance directives obtained. After determining Sophia's baseline knowledge, the first encounter with her should be used for relationship building. An open exchange is needed to facilitate discussion regarding unknown circumstances that may occur in the future. In a trusting relationship, the CNS would be truly present in the process by listening to and supporting the decisions made.26 The patient needs to have an understanding of his/her own health and needs to discuss specific decisions that can be made according to his/her personal values.12 If Sophia feels supported in an open exchange, she will be able to share this difficult information with the CNS. In this conversation, the CNS must use the source of personal motivation described in the 6-Source Model, where the patient connects with the CNS to find a greater sense of purpose.14 The 6-Source Model says that, as the influencer, the CNS must help the patient also tap into his/her source of personal ability to adopt a "growth mindset" that allows change to take place.14 This is not easy for the CNS to do and requires expert communication and interpersonal skills.
Before completing the first meeting, the CNS should provide Sophia a list of resources. It should contain Web sites and contact information for the nearest community programs that can provide additional education to both patients and their families. It is important to provide the patient with ways to continue his/her learning and increase his/her baseline understanding of his/her options regarding end-of-life decisions.19 The CNS should then explain to Sophia that she will continue to talk about advance directives and his/her goals of care throughout her hospital course after surgery. The CNS should tell Sophia that he/she plans to stop in daily to answer any questions she has about her prognosis, treatment options, and completing advance directives if Sophia had not already done so. Although patients want honest information and guidance from physicians, cardiac surgeons are not always available for quality discussions regarding a patient's prognosis or current health status because of time constraints.27 The CNS has to bridge the communication gap and be available for patient or family questions. It is in this availability that a trusting relationship can develop and where a quality discussion about advance care planning can take place.
SUMMARY
In the past years, there has been little to no increase in the number of advance directives obtained in the United States. Only recently have we learned how to formulate an advance directive process, shaped from promising programs such as Respecting Choices. In our case, the CNS was not after a piece of paper stating what treatments Sophia did not want. Instead, the CNS understands patient needs to be led through a process of discussing personal values, goals, and what he/she does want documented in his/her plan of care. Also realized is the importance of establishing and documenting a surrogate to make decisions congruent with the patient's wishes, in the event the patient cannot make his/her own decisions.
Change is necessary to achieve the desired outcomes of an increased number and more effectively used advance directives. The change must be system-wide, impacting patients, nursing, and the organization as a whole. Facilitating this change will be a struggle that requires a significant amount of time and effort from the CNS. With the requirements posed on hospitals from TJC and the PSDA, a change in process must take place to ensure that we are doing all we can do to carry out a patient's wishes. With expert interpersonal skills, the CNS is a driving force for developing strategies to lead institutional change. Educated in ethics, role development, organizational theory, and social issues, the CNS is well prepared to improve the process within the system. With the skills of a leader, change agent, liaison, expert clinician, and communicator, the CNS is the ideal facilitator to lead change. To provide a consistent, comprehensive process approach, the checklist guides the CNS in addressing the needs of the patient, nursing staff, and the system. The checklist discussed here was used within the cardiac surgery patient population and will hopefully guide the CNS in creating a lasting change in the advance directive process. It is expected that the checklist can be used to positively impact advance directives in other patient populations, when used by motivated and educated CNSs in other specialties. As an expert practitioner and patient advocate, it is the CNS who can make this possibility a reality.
References