Make Your Wishes About You (MY WAY): Using Motivational Interviewing to Foster Advance Care Planning for Patients with Chronic Kidney Disease.
About one in three adults in the United States currently completes an advance directive, and the proportion is not much higher, even for those with a serious illness. Current national efforts to improve advance care planning include Respecting Choices--Person-Centered Care (https://respecting choices.org/) (n.d.), The Conversation Project (http://theconversationproject. org/) (n.d.), the American Bar Asso ciation's Health Care Decision Making (American Bar Association Commission on Law and Aging, n.d.) and the National Physician Orders for Life Sustaining Treatment (POLST) Paradigm (National POLST Paradigm, n.d.). Success will be measured not just by the number of people who filled out legal forms, but more importantly, by the ability of the healthcare system to implement those directives appropriately, reliably, and sensitively (McCutcheon, Kabcenell, Little, & Sokol-Hessner, 2015).
The Kidney Disease Outcomes Quality Initiative (KDOQI) Controversies Conference on Supportive Care in Chronic Kidney Disease (CKD) developed an executive summary of guidelines to improving quality care and in one area focused on shared decision making with advance care planning, suggesting these conversations start early before initiating dialysis therapy (Davidson et al., 2015). Patients with CKD experience very high rates of strokes, dementia, and other events that may make it difficult for them to make their own medical decisions toward the end of life, making advance care planning especially relevant for this population. Yet only a minority (6% to 49%) of patients with end stage renal disease (ESRD) have an advance directive (Feely, Hildebrandt, Varayil, & Mueller, 2016; Wachterman et al., 2017), and rates for patients with CKD Stages 4 and 5 are even lower (Davidson, 2010; Luckett et al., 2014).
For advance care planning to work well, patients need to express their values and preferences to their healthcare professionals and to their designated healthcare decision makers--the "conversation" aspect of the process. In addition, healthcare professionals and health systems need to be ready to receive those conversations and enact them--the "conversation ready" aspect of the process (McCutcheon et al., 2015). Patients say they want to have these conversations with their nephrology team, yet 90% say they have not talked to their nephrologist about prognosis or end-of-life issues (Davidson, 2010). This article gives an overview of an advance care planning curriculum developed to give nephrology healthcare professionals, especially advanced practice nurses, registered nurses, and social workers, more skill and confidence in leading advance care planning conversations with their patients with CKD.
As shown in Figure 1, care planning, advance care planning, and shared decision making are all related processes, but there is much confusion over the use of the terms. "Care planning" is the broadest term, covering all aspects of helping patients/families articulate their goals and develop realistic plans to address them. Shared decision making applies when several courses of action are open to the patient; for instance, when a patient is deciding whether or not to begin dialysis. Selection of the appropriate action is best done through a collaborative process that allows patients and their healthcare professionals to make healthcare decisions together, taking into account the best clinical evidence available, as well as the patient's values and preferences (Informed Medical Decisions Foundation, n.d.). Advance care planning is the process of having a patient state what he or she would want in the future if the patient became unable to communicate or make decisions for him/herself. Advance care planning also includes appointing someone to be the designated healthcare decision maker (or "proxy") in the future. Advance directives are documents that record results of advance care planning discussions (Sudore et al., 2017). Each state has different rules for enforceable advance directive documents (American Bar Association Commission on Law and Aging, n.d.). POLST forms are a further step in the advance care planning process for seriously ill patients. POLST forms are medical orders that translate patients' wishes into orders that can be honored across all healthcare settings (Yadav et al., 2017). Table 1 provides a more detailed definition of POLST forms.
Advance care planning can help people receive medical care consistent with their values, goals, and preferences during serious and chronic illness (Sudore et al., 2017). In an analysis of national data, Tamura, Montez-Rath, Hall, Katz, and O'Hare (2017) found that nursing home patients with ESRD and a treatment limiting advance directive and surrogate were less likely to have hospitalizations, intensive care admissions, invasive treatments, and inpatient death. In a randomized controlled trial of usual care vs. advance care planning with a trained facilitator for patients with CKD and ESRD, Kirchoff, Hammes, Kehl, Briggs, and Brown (2012) found that those with a trained facilitator were more likely to have their desired CPR goals met and more likely to withdraw from dialysis than the control group. Sharing Patients' Illness Representations to Increase Trust (SPIRIT) is a training program in which ESRD professionals were trained in communication about end of life (Song et al., 2015). Families in the SPIRIT intervention group had higher family congruence in decision making, decreased decisional conflict, and better bereavement scores than those who did not get training. Discussions about advance care planning with patients with cancer result in fewer patients on ventilators or respirators, fewer ICU admissions, and greater likelihood of earlier referral to hospice (Wright et al., 2008).
Persons with CKD do not complete advance directives for many reasons. These barriers stem from patient factors, provider factors, and system factors. For provider factors, considerable literature documents that nephrologists, nephrology nurses, and even social workers feel ill-equipped to conduct advance care planning discussions. For nephrologists, this may stem from lack of exposure during training. While nephrology fellows rate their overall educational experience positively, they report inadequate training in end-of-life care (Combs et al., 2015). In one study, only 39% of nephrologists perceived themselves as well-prepared to engage in conversations about end of life (Davidson, Jhangri, Holley, & Moss, 2006). A 2015 study of nephrology fellows found that only 43% were taught to refer a patient to hospice, and only 27% were taught to refer to palliative care. Less than half of renal fellows heard of the Renal Physicians Association (RPA) Shared Decision Making in the Appropriate Initiation and Withdrawal from Dialysis (Combs et al., 2015). Despite this gap in training, Schell, Green, Tulsky, and Arnold (2013) found that fellows who received communication training about end-of-life care felt better prepared to deliver bad news, express empathy, and discuss initiation and withdrawal of dialysis. It is understandable that renal professionals report being uncomfortable with the topic (Ceccarelli, Castner, & Haras, 2008). Nephrologists report barriers that include fear of upsetting the patient or destroying hope (Wasylynku & Davison, 2014), concern about how to convey the uncertainties of prognosis (Combs, 2016; Schell & Lam, 2017), and lack of time.
Despite overall nursing competence in communication and patient advocacy, nephrology nurses have low rates of engaging patients in advance care planning (Ceccarilli et al., 2008; Haras, Astroth, Woith, & Kossman, 2015). In a comprehensive literature review, Haras, Astroth, Woith, and Kossman (2015) identified multiple factors, including fear of patient and family reactions, lack of confidence and skills in having conversations, concerns about support or reactions of colleagues, and questions about how to address divergent belief systems. Work to validate an instrument to measure nephrology nurses' perception of advance care planning found four independent factors: knowledge, attitude, comfort, and support. (Haras, Astroth, Hesson-McInnes, Kossman, & Woith, 2015). Lack of organizational support was a major barrier in providing end-of-life conversations; nephrology nurses responded to a national survey reporting they did not have enough time in their day to conduct advance care planning discussions with patients or families, their nurse manager considered advance care planning discussions in workload assignments, and the workload was not conducive to having advance care planning discussions with patients and families (Haras, Astroth, Hesson-McInnes et al., 2015).
There is also reluctance by patients to engage in conversations about advance care planning. Patients may not understand advance care planning or know how to bring up the discussion (Wasylynku & Davison, 2014). Many patients do not believe they are terminally ill (Wasylynku & Davidson, 2014) or understand their disease and prognosis (Mandel, Bernacki, & Block, 2016). Spiritual and emotional barriers also prevent patients from completing advance directives. In a study of 143 persons over age 50 years receiving general medicine outpatient services in San Francisco County who had not completed an advance directive, 53% of respondents identified emotional issues or work/family responsibility as barriers, and 43% indicated they believed health choices should be left in God's hands (Schickedanz et al., 2009).
Cultural issues should be considered in conversations about advance care planning. The incidence of ESRD in African Americans is three times that of white counterparts (United States Renal Data System [uSrDS], 2017). Another study found African Americans are less likely to have an advance directive compared to whites (35% vs. 67%), citing discomfort in discussing, distrust in the medical profession, and incongruent spiritual beliefs (Johnson, Kuchibhatla, & Tulsky, 2008). Wilkinson and colleagues (2014) found that most South Asians lacked awareness of end-of-life care needs, in addition to having language barriers.
Research that has focused on how to have serious illness conversations with an individual with ESRD or CKD can help shed light on what techniques and skills are most useful in practice. In general, interventions involving interactive, person-to-person interaction, where participants had the opportunity to ask questions and/or receive assistance completing forms, are more effective than interventions that focus only on providing information (Jezewski, Meeker, Sessanna, & Finnell, 2007). A renal-specific advanced communication training (REACT) program was piloted with 16 healthcare professional participants, focusing on facts, patient and career experiences, professional experiences, communication skills, engagement with material, and feedback sessions (Bristowe et al., 2014). The professional focus groups found that healthcare professionals expressed a need for more information about end of life, more awareness of patient and caretaker perspectives, more communication skills in challenging conversations, more hands-on experience, and better engagement and follow-up discussion experiences.
In a literature review, Mandel and colleagues (2016) identified the need to have early, regular, and private conversations with patients who have kidney disease while the patient is still stable and before a decision is made on dialysis or transplantation. Rather than explicit information giving, Mandel and colleagues (2016) recommend that healthcare professionals first focus on the patient's understanding of illness and elicit how the patient would like to discuss his or her wishes. Conversations should then move to discussion about prognosis and individualized health and personal goal setting, focusing on patient fears and strengths. Healthcare professionals should help patients explore what changes might make a patient reconsider his or her plan and highlight tradeoffs, including weighing quality of life vs. disease burden. Mandel and colleagues (2016) encourage family attendance at meetings and recommend that healthcare professionals explore how to involve family. Research that has specifically focused on African Americans with ESRD also indicates patients prefer more than just information giving, also valuing the opportunity to express emotions and beliefs (Song et al., 2015).
While the information above gives healthcare professionals a roadmap for having conversations about advance care planning, little is written about the specific skills needed to have effective conversations. Our model goes beyond merely education and provides healthcare professionals with a toolkit for having productive conversations to help patients realize their unique goals.
Motivational Interviewing and Stages of Change Theory
Motivational interviewing is a skills-based approach for helping persons change behavior. Developed by S. Rollnick and W.R. Miller, motivational interviewing focuses on helping patients find their own motivation to change, a shift from traditional medical models that consist of practitioners providing information for patients to follow (Rollnick, Miller, & Butler, 2008). Motivational interviewing requires professionals to engage patients as active members of the healthcare team. Motivational interviewing is a flexible approach that encourages professionals to move away from the traditional medical model in which healthcare professionals dictate to the patient what he or she should do. Instead, healthcare professionals learn to "resist the righting reflex", (Rollnick et al., 2008, p. 7) ask open-ended questions, and offer empathetic and reflection statements that elicit the patients' unique motivations to change behavior (Rollnick et al., 2008). In this model, informing is minimized, and healthcare professionals ask permission prior to giving advice. Motivational interviewing encourages patient self-determination, empowerment, partnership, and compassion.
Motivational interviewing has been used successfully in many areas of health care, including diabetes management, diet, eating disorders, gambling, physical activity (Zoffmann et al., 2016), smoking, mammograms and medication management (Fried et al., 2016). It is also effective specifically with African Americans. In a randomized control trial of African-American patients with hypertension, motivational interviewing proved more effective in improving medication adherence than usual care (Ogedegbe et al., 2008).
In patients with ESRD on hemodialysis, motivational interviewing has been successfully used to assist with fluid management (Cronk et al., 2012), hemodialysis adherence (Russell et al., 2011), depression and anxiety (Garcia-Llana, Remor, del Peso, Celadilla, & Selgas, 2014), and better phosphate control and improved serum albumin levels (Russell et al., 2011). Programs designed to train nephrology healthcare professionals in motivational interviewing focus on a variety of skills. In a study about the impact of cognitive behavioral therapy (CBT) and motivational interviewing on fluid adherence in patients on hemodialysis, Cronk and colleagues (2012) focused training on helping healthcare professionals express empathy, develop discrepancy between current patient behaviors and values and goals, roll with resistance, support patient self-efficacy, ask open-ended questions, offer reflective listening, affirm patient strengths and efforts, summarize, elicit change talk, and ask permission before giving advice. Not only did the trainees report learning new and more positive skills, they also reported an increase in their own motivation and hope for preventing burnout.
Advance care planning cannot be completed through fixed directive steps, but rather, requires adjusting the approach based on the patient's readiness to engage. In a study of 77 persons aged 65 years and older, Fried and colleagues (2016) found there was great variation in a person's readiness to complete an advance directive, with as many as 40% of participants having never thought about it. The Stages of Change Theory suggests that readiness to change behavior occurs on a spectrum, and interventions should be designed based on where the patient is in terms of readiness to change (Prochaska & Velicer, 1997). The five stages outlined in this model are:
* Pre-contemplation: Patient is not ready to change.
* Contemplation: Patient is thinking about changing behavior.
* Preparation: Patient is planning to make changes in the future.
* Action: Patient is actively making changes.
* Maintenance: Change has happened, and patient is making efforts to maintain behavior (Prochaska & Velicer, 1997).
Westley and Briggs (2004) describe the use of the Stages of Change Theory to communicate about advance directives. Table 2 provides a summary of each stage.
In an advance directive education intervention, Ko, Hohman, Lee, Ngo, and Woodruff (2016) provided a single motivational interviewing counseling session matched to the patient's stage of change. Patients' knowledge about advance directives was measured using a modified Advance Directive Knowledge Scale ranging from 0 to 7, with higher scores indicating the most knowledge. Patients' knowledge in creased from a mean of 3.27 before intervention to 5.47 afterwards, and self-efficacy scores improved from 5.93 to 7.67 post-intervention. Both motivational interviewing and the Stages of Change Theory emphasize that professionals who try to "sell" ideas to persons in early stages of change (pre-contemplation) often see patients become even more resistant (Rollnick et al., 2008).
Make Your Wishes About You (MY WAY) Approach
Because of the barriers associated with advance care planning as well as the successes of skills training for healthcare professionals, the Coalition for Supportive Care of Kidney Patients (CSCKP) (2017) developed the Make Your Wishes About You (MY WAY) program. CSCKP is a coalition of individuals and organizations interested in promoting the infusion of palliative care principles and practices throughout the continuum of care for patients with kidney disease (CSCKP, n.d.) The MY WAY program was designed to fill a gap in materials for patients and families. Although it could be used for patients already on dialysis, it has been designed and is being tested specifically for an earlier stage in the disease before patients make decisions about their treatment modality for kidney disease. The MY WAY program has two parts: an informational brochure about advance care planning for patients with CKD and a coaching guide for healthcare professionals, both available from the CSCKP website (https://kidney supportivecare.org/Home.aspx).
The MY WAY approach emphasizes that advance care planning is appropriate for any adult to undertake. It is not a sign that someone is about to die, but a "plan B"--a plan to have in case things do not go as well as hoped. The patient material is written at a 7th grade level, and type size and layout are age-friendly. MY WAY suggests that advance care planning conversations should happen well before a patient begins dialysis or has a transplant to assure patients have clarity of thought and can avoid making an emotional decision in the middle of crisis. Without an advance directive, patients are more likely to have dialysis initiated, despite evidence from Davidson (2010) that 61% of patients regretted starting dialysis and only 10% of those patients on dialysis stated there had been a conversation about end-of-life care with their nephrologist in the last year.
The MY WAY coaching guide is rooted in the Stages of Change Theory and the motivational interviewing approach. The MY WAY coaching guide melds several features from motivational interviewing, including using a flexible approach, resisting the righting reflex, rolling with resistance, and listening for client motivation with content and issues of advance care planning. Below is a summary of how these features can be used in coaching a patient with CKD in advance care planning.
Using a Flexible Approach
Rollnick and colleagues (2008) emphasize the importance of flexibility in consultation. Since patients have great variation in their readiness to discuss advance care planning, healthcare professionals must also take a flexible approach. This means that if a patient has never heard of an advance directive, the healthcare professional should not expect a meeting with a healthcare professional will result in a completed advance directive by the end of the meeting. A patient who has low-level readiness to complete the advance directive will benefit most from exploring his or her values, preferences, and personal experiences dealing with chronic illness. Likewise, a patient who has already completed an advance directive does not need the healthcare professional to spend time repeating information the patient already knows. In this case, the healthcare professional can revisit the advance directive and encourage the patient to consider any changes or updates.
Resisting the Righting Reflex and Rolling with Resistance
Healthcare professionals are trained to "fix it," and while that is helpful in clinical settings, Rollnick and colleagues (2008) suggest that persuading people results in resistance. Rollnick and colleagues (2008) argue that people are more likely to believe what they hear themselves say; thus, healthcare professionals should help patients articulate their own arguments for change. A nephrology healthcare professional should anticipate many patients will initially exercise resistance to advance care planning, stating they might believe "it's in God's hands" or their illness is not life-threatening. In these cases, it is important for the healthcare professional to acknowledge that giving advice or arguing (thus, resisting the righting reflex) might actually make the patient more resistant. Rather, the healthcare professional should take time to explore the patient's barriers, fears, and concerns. At this stage, it is important for the healthcare professional to convey to the patient the healthcare professional "gets it" by offering reflective statements and empathy. In this case, a healthcare professional might say, "It sounds like your religion is very important to you," pause, and allow the patient an opportunity to respond. The healthcare professional might follow up with an open-ended question, such as, "How does your spiritual belief impact how you take care of your health?"
Listening for Client Motivation
Motivational interviewing does not mean the healthcare professional motivates the patient. Motivational interviewing is about helping the client find his or her own intrinsic motivation (Rollnick et al., 2008). This means the healthcare professional needs to ask and listen for what might be the client's own motivation to engage in advance care planning. While the healthcare professional might believe a good motivation for advance care planning is to alleviate pain or suffering, a patient might be motivated because he or she has a strong desire to remain independent or fears being a burden to family members. A healthcare professional can capture connecting the patient's motivation to the rationale for advance care planning.
Core Communication Skills
Healthcare professionals, often focused on "fixing" ailments, must shift communication skills to overcoming potential client resistance. The MY WAY model focuses on three core communication skills of motivational interviewing: asking open-ended questions, listening, and informing patients. The model encourages practitioners to use the motivational interviewing skill of "elicit-provide-elicit" and only offer information after listening to and learning from the patient's experience.
Asking Open-Ended Questions
Assessment is the first step in helping patients resolve issues, and asking questions is a natural approach to starting an assessment. When using motivational interviewing, it is important that healthcare professionals view the assessment as one component of the relationship but avoid institutionalized questioning that relies primarily on gathering information and lacks conversation flow (Rollnick et al., 2008). Motivational interviewing encourages healthcare professionals to ask open-ended questions that garner a great deal of information in one question, as opposed to asking closed-ended questions that often elicit only one- to two-word responses. Asking a patient, "Do you have an advance directive?" only gives the healthcare professional a "yes" or "no" responses, whereas asking, "Tell me about your experience with advance directives," allows the patient to give more information and conveys the professional is showing personal interest (Rollnick et al., 2008). This allows for a more natural conversation flow and prevents healthcare professionals from having to ask multiple questions, which can sometimes make patients feel interrogated, defensive, or as though questioning lacks meaning or purpose (Rollnick et al., 2008).
Listening and Reflecting
Listening is a core skill that can provide fruitful information to healthcare professionals. In a literature review, Mauksch, Dugdale, Dotson, and Epstein (2008) reported that patients will talk for up to two minutes if left uninterrupted; however, a study from the Institute of Medicine (IOM) (2001) reported that patients are interrupted within the first 18 seconds of a physician visit, and a recent study by Ospina and colleagues (2018) found that physicians interrupted patients in a median of 11 seconds.
A motivational interviewing approach encourages healthcare professionals to slow down and allow patients the opportunity to respond (Rollnick et al., 2008). Patients who are interrupted might be cut off from providing pertinent information that will help the healthcare professional create a meaningful intervention. Though individuals in Western societies are often not accustomed to silence, it is important to allow patients the space to think and respond (Rollnick et al., 2008). Listening alone, however, is not enough. Healthcare professionals must also be able to demonstrate that they "get it" by using reflective statements. Table 3 provides examples of patient statements and corresponding empathetic or reflective statements.
Patients are not going to change behaviors if they lack the information or education about why doing so is important. However, healthcare professionals are often perplexed as to why many patients do not seem to change behavior after having been given the evidence. Rollnick and colleagues (2008) suggest that patients might be confused, passive, highly emotional, or distracted. Therefore, healthcare professionals should use information giving only after the healthcare professional has gauged the patient's knowledge and experience by asking and listening. When giving information, it is important for the healthcare professional to ask for permission to share information before giving it, which gives the patient an opportunity to feel in control (Rollnick et al., 2008). Table 4 provides an example of information giving in motivational interviewing. Rollnick and colleagues (2008) also suggest that healthcare professionals consider talking about what others do when giving advice, keeping the healthcare professional neutral and allowing the patient to discuss whether it would work for him or her. If used appropriately, these skills should help patients sense the healthcare professional is collaborating with them and honoring their own autonomy (Rollnick et al., 2008).
7-Step MY WAY Approach to Coaching
Using the information outlined in the literature review, as well as knowledge gained from the Stages of Change Theory and the motivational interviewing approach, we developed a 7-step coaching guide (see Table 5) for healthcare professionals to use when having conversations about advance care planning. The coaching guide can be found on the CSCKP's website (http://www.kidneysupportivecare.org/Files/CurriculumGuide AdvanceCarePlan3-2017.aspx). The following section reviews each step of the process. It is important to note that flexibility is essential. While we have designed individual steps, we understand that healthcare professionals who begin a discussion regarding concerns about end-of-life care might naturally discuss choosing a healthcare agent (Step 4) before discussing advance directives (Steps 2 and 3).
Step 1: Values Assessment
Following the suggestion of Rollnick and colleagues (2008), as well as other researchers who have addressed advance care planning with other populations, the MY WAY approach starts the conversation about advance care planning by assessing and exploring the patient's values related to health care. Because motivational interviewing emphasizes the importance of patients using their own language and motivations, healthcare professionals should resist the urge to educate or "fix" in this stage, and focus on asking and listening by incorporating the research of Jezewski and Meeker (2005). This research suggests that drawing on a patient's past experience can facilitate better understanding of the advance care planning process (Jezewski & Meeker, 2005). This can be done by asking an open-ended question, such as, "Sometimes when people are diagnosed with an illness like CKD, it brings up many questions and concerns about their medical care in the future. Have you ever known anyone who has had a serious illness?" followed by questions such as "What went well?" and "What was difficult?" Healthcare professionals should follow up by listening and providing reflective statements that demonstrate understanding of unique client situation.
Step 2: Introducing the Advance Directive
After a healthcare professional has a sense of what the patient's overarching values are, the healthcare professional should assess the patient's knowledge about advance directives, and offer education if there is a need. For patients who know what an advance directive is, healthcare professionals should check in with patients about completing the documents. In this phase, it is important for healthcare professionals to listen for the patient's own motivation to complete the advance directive. Some examples include:
* I want to be as independent as possible.
* I don't want to burden my family.
* I am afraid of pain and suffering.
* I don't want my children to argue about how to care for me.
It is important to remember the healthcare professional's own internal motivation to complete an advance directive might be quite different than the patient's. Avoid the urge to sell or convince the patient why this is important, but rather, listen for the patient's unique rationale.
Step 3: Reviewing the Advance Directive
While Step 2 merely provides an overview of what an advance directive is, in Step 3, healthcare professionals are encouraged to review the state-specific advance directive form with the patient. In this phase, healthcare professionals should assess in what circumstances the patient might want life-prolonging treatment in the event he or she could not speak for him/herself. This is not intended to be the "renal replacement therapy options" conversation, but rather, a broader conversation that covers core values to guide future decisions. Where patients already have strong feelings (pro or con) concerning specific interventions, such as cardiopulmonary resuscitation (CPR), feeding tubes, or blood transfusions, these can be recorded. However, this section is not intended to produce a list of dos and don'ts about every possible intervention, but to help patients express the broad principals to guide future decisions. Since patients may fear the conversation signals a crisis, healthcare professionals should underscore the importance of revisiting these wishes because people can change their mind and modify advance directives at any time. Healthcare professionals should reiterate all adults should have an advance directive, and it should be reviewed over the course of a lifetime, not just at a crisis point.
Step 4: Choosing a Healthcare Agent
After the advance directive has been reviewed, it is important to assess the patient's knowledge about healthcare agents. Healthcare agents are persons identified by the patient to make healthcare decisions in the event a patient cannot speak for him/herself. Healthcare professionals should provide information and education as needed, and explore with patients any potential barriers to appointing a healthcare agent. Table 1 contains a more detailed definition of a healthcare agent. Healthcare professionals can open this section by asking an open-ended question, such as, "Could you tell me a little bit about your experience with healthcare agents or healthcare power of attorneys?" Some example responses might be:
* "My sister-in-law sold all of my mother's property and kept the money!"
* "My brother never had one, and when he got Alzheimer's, the oldest siblings put him in a nursing home to save his money. I had no control since I was the youngest, but I would never have let that happen!"
* "I think Lucy will get her feelings hurt if I don't ask her."
As with the prior steps, healthcare professionals should listen and offer reflective and empathetic statements before giving advice and responding. After asking for permission, the healthcare professional can give the patient pertinent and accurate information about healthcare agents.
Step 5: Having the Conversation
Step 5 is about empowering the patient to initiate the next step: having a conversation with family, friends, a healthcare agent, and the healthcare team. Many patients report waiting for the physician to have a conversation with them (patients), but do not realize the physician may be waiting for patients to bring up the issue (Davidson, 2010). Further, patients might be concerned about the emotional response of family and friends. Healthcare professionals can help patients develop the skills to have those conversations (Schickedanz et al., 2009). A simple question to start the conversation might be, "I am wondering if you can tell me about what kinds of conversations you have had with family or loved ones about advance directives or healthcare agents?" Healthcare professionals can listen for barriers and help patients explore options for having these discussions.
Step 6: Asking for the POLST/MOLST Form
While every patient will not need a POLST/MOLST form, healthcare professionals should assess patients' knowledge of the POLST/MOLST forms and provide education and information, as needed. Healthcare professionals should delineate the difference in the state advance directive form and the POLST/MOLST form. Table 1 provides more details about the difference in an advance directive and POLST/MOLST form. Open-ended questions and reflection statements can help identify any patient barriers to completing forms, if needed, and refer patients to appropriate team members, as needed.
Step 7: Conclusion of MY WAY Approach
There will be great variation as to how far a healthcare professional can move through this process based on the individual patient's knowledge, experience, and readiness to engage in advance care planning. While a healthcare professional might only get through Step 2, all healthcare professionals should offer at least five minutes to wrap up the interview. In this phase, healthcare professionals are encouraged to offer a strengths-based message about the work that has been done and outline next steps for both the patient and healthcare professional. Patients should have the opportunity to ask questions or make comments. Healthcare professionals should give the patient contact information about how to follow up with questions or concerns.
It is encouraging to observe advances in hospice use rates for patients with ESRD over the past 15 years, from 10.8% in 2000 to 26.8% in 2014 (USRDS, 2017). However, patients with CKD and healthcare professionals continue to express personal, professional, and systemic barriers to advance care planning. Though care planning and education about advance directives may exist in nephrology settings, the difficult emotional nature of end-of-life discussions make it less effective. The primary goal of the MY WAY Coaching Guide is to provide a feasible approach for nephrology healthcare professionals to use to have conversations about advance care planning with patients in such a way that empowers patients to make decisions and complete the documents. This guide is only one part to the larger challenge of helping patients realize their end-of-life goals. Future studies should examine the effectiveness of this coach training on advance care directive completion rates and measure the effectiveness of coach training in the delivery of this model.
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Elizabeth Anderson, DSW, MSW, LCSW, is an Assistant Professor of Social Work, Western Carolina University, Cullowhee, NC.
Annette Aldous, MPH, is a Senior Research Associate, George Washington University, Washington, DC.
Dale Lupu, MPH, PhD, is an Associate Research Professor, the Center for Aging, Health and Humanities, George Washington University, Washington, DC.
Acknowledgement: The authors sincerely thank Dr. Alvin H. Moss, chair of the MY WAY Advisory Committee, for his expert advice and guidance.
Source of Funding: This projected was funded by the Patrick and Catherine Weldon Donaghue Medical Research Foundation through a grant to George Washington University and the Coalition for Supportive Care of Kidney Patients, a project of Quality Insights Mid-Atlantic Renal Coalition.
Statement of Disclosure: The authors reported no actual or potential conflict of interest in relation to this continuing nursing education activity.
Note: The Learning Outcome, additional statements of disclosure, and instructions for CNE evaluation can be found on page 422.
Caption: Figure 1 Advance Care Planning and Shared Decision-Making Are Aspects of Care Planning
Table 1 Definitions of Terms Used in Advance Care Planning Health care agent--A family member or friend a person chooses to make healthcare decisions if he or she cannot make those decisions. Also referred to as "healthcare proxy" or "healthcare power of attorney." A healthcare agent has no authority in health care unless the person is unable to make decisions him/herself. A healthcare agent has no power over any other part of person's life (finances, will, etc.). If a person does not have a healthcare agent, then doctors will usually ask the next of kin in the order dictated by state law. A healthcare agent is only official if a person completes an advance directive. Advance directive--A legal document that allows a person to have control over his or her healthcare decisions if he or she is ever unable to speak for him/herself. Every state has a different form to use (see http://www.caringinfo.org/i4a/pages/ index.cfm?pageid=3289). Advance directives should be shared with the healthcare agent, trusted family members or friends, doctors, hospitals, or any other healthcare facility. Advance directives can be changed any time. Advance directives should be reviewed throughout a person's entire adult life, especially: * Before each annual exam. * After any major life change (birth, marriage, divorce, remarriage). * After any major medical change, such as diagnosis of chronic kidney disease or hospitalization. * After losing ability to live independently. POLST/MOLST form--Stands for "Physician Orders for Life-Sustaining Treatment" and "Medical Orders for Life-Sustaining Treatment." It helps individuals with serious illness or frailty to communicate their treatment decisions. The POLST form is a portable medical order form that records a patient's treatment wishes so emergency personnel know what treatments the patient wants in the event of a medical emergency. POLST is known by different names in different states. For the list of names, see http://polst.org/programs-in-your-state/ Table 2 Stages of Change and Corresponding Interventions Example Patient Interventions Statements Pre-contemplation "I don't know what "Have you or someone you are talking you know been about." involved in healthcare decision making?" Contemplation "I am interested in Examine barriers, learning more about fears, concerns. it." Preparation "What do I need to "What do you know do?" about advance directives?" Action "Here is what I have "What assistance do done." you need to complete the advance directive?" Maintenance "Is everything okay?" "Would you like to review your plan to see if it reflects your current wishes?" Source: Adapted from Westley & Briggs, 2004. Table 3 Motivational Interviewing Responses Patient Response Traditional Response Motivational Interviewing Response My friend had to rely Healthcare You care a great deal heavily on friends professional "fixes" about your own and family. this issue by finding health, and you have solution. "That is learned a great deal why you should from your friend's complete an advance experience. directive!" This is out of my Healthcare It sounds like your control; it is in professional gives relationship with God God's hands. evidence about why is very important. this is not true. Discussing this makes Healthcare It's scary talking me feel like you professional tries to about healthcare think I am going to smooth over difficult needs in the future, die. feelings and reassure and discussing it patient is healthy makes it feel real. and is the exception. Table 4 Information Giving Statements/Responses Motivational interviewing Skill Healthcare Can you tell me about Asking professional your experience working with healthcare agents? Patient My sister had Patient explains designated her oldest barrier son as a healthcare agent, and he took all of her money and put her in a nursing home! Healthcare That must have been Reflecting professional very difficult to have seen your sister taken advantage of like that. No one wants that to happen! Patient Yes, it was very Patient felt upsetting to me. comfortable being honest about emotional response Healthcare It is important to you Asking permission to professional to have someone you share information. trust be a part of your health care. I have some updated information about how healthcare professionals work in our state. I am wondering if I can share that with you. Table 5 7-Step Coaching Guide Step Topic Step 1 Values Assessment Step 2 Introducing Advance Directive Step 3 Reviewing Advance Directive Step 4 Choosing the Healthcare Agent Step 5 Having the Conversation Step 6 Asking for a POLST/MOLST Form Step 7 Conclusion
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|Author:||Anderson, Elizabeth; Aldous, Annette; Lupu, Dale|
|Publication:||Nephrology Nursing Journal|
|Date:||Sep 1, 2018|
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