Advance Care Planning for Patients with End-Stage Renal Disease

Advance Care Planning for Patients with End-Stage Renal Disease Advance care planning (ACP) may seem straightforward to some. However, for many people this is a challenging topic to discuss and a complex landscape to navigate. This work can be time consuming and emotionally charged, requiring the collaboration of several team members for positive outcomes to result. As a renal social worker in an acute care setting, I see ACP surfacing frequently as a discussion topic. I have seen cases ranging from patients not participating in any ACP to very detailed ACP documentation. This Viewpoint will discuss ACP, explore both the negatives and positives of ACP, and focus in on a study that found a certain model for ACP to be successful. Throughout this text, I will reference the case of Ms. B to help further demonstrate that ACP is a valuable tool for patients with chronic kidney disease, despite some challenges and drawbacks. When working with these patients, the aim is to protect and promote patient autonomy during times of high vulnerability. To prepare for a discussion of ACP in greater depth, it is crucial to define the language. According to Davison and Torgunrud (2007), ACP is a “process that involves understanding, reflection, communication, and discussion between a patient, family/health care proxy, and staff for the purpose of prospectively identifying a surrogate, clarifying preferences, and developing individualized plans for care near the end of life” (p. 28). It is clear from this definition that ACP is not simply completing documentation and also requires a considerable amount of thought and discussion. From this definition it is evident that one must first identify a surrogate and then discuss end-of-life care preferences with that designated person. A recent study showed that filling out standardized ACP forms is not enough, dialysis patients require greater discussion, and withdrawal of dialysis should be a part of that discussion (Goff et al., 2015). ACP encourages people to advocate for their personal values around end of life, which can incorporate one’s individual culture and medical diagnoses (Davison & Torgunrud, 2007). The word “advance” in ACP implies that these wishes come into effect once the patient lacks the capacity and can no longer advocate for himself or herself (Davison & Torgunrud, 2007). ACP is a broader term that advance directives, living wills, and code status (for example) may fall under, but ACP can still be successful without such documents (Davison & Torgunrud, 2007). In the case of Ms. B, a 92-year-old woman with end-stage renal disease (ESRD), ACP was an empowering intervention that ultimately guided her children to act in her stated best interest. Ms. B came to the hospital with nausea and weakness, and she generally felt unwell. She had been followed in the outpatient Kidney Care Clinic, and it was well known that she had stage 5 kidney disease. With her consent she was placed on hemodialysis and had seven treatments over the course of her hospitalization, which she tolerated very poorly. She expressed a clear wish not to continue with hemodialysis. She wanted to undergo medical management of ESRD and focus on quality of life rather than quantity. Ms. B presented as a capable woman and the medical team felt that she was able to make her own decisions. As the social worker for this case, I was asked to organize a family meeting with her children to review her preferences for end of life and to make plans moving forward. The attending physician for this case was rather anxious about how her family would respond to her wishes. Despite him knowing that Ms. B was mentally capable, there was this underlying fear that perhaps she did not fully appreciate the consequences of stopping the dialysis. During the meeting it was clear that her children supported her decision and respected her choices. Ms. B expressed that she wanted to enjoy whatever remaining time she had left, free of any life-sustaining therapy. She went home with community supports, and I helped facilitate a palliative care referral so that a palliative care doctor would do home visitations. She walked out of the hospital on her own, with the support of her children and a smile on her face. Five months after her discharge, she passed away at home. Up until two weeks before her passing, she maintained her independence. In this case it is evident that ACP allowed her to voice her values and helped her maintain her autonomy and ultimately die with a sense of control. A key component of ACP is to respect patient autonomy in the case of incapacity (Davison & Torgunrud, 2007). To be able to advocate for one’s care wishes in advance is particularly important during a medical crisis, a reality for patients with ESRD, because this will help guide the medical team and family. Davison and Torgunrud (2007) summarized the importance of ACP when they stated, “There is growing evidence that this concept of ACP is valuable to patients with ESRD because it allows them to prepare for death, strengthen relationships with loved ones, achieve a sense of control, and relieve burdens placed on others” (p. 28). Not only does ACP allow patients to have a real influence on their own care decisions, it can help relieve some of the stress placed on the surrogate decision maker. ACP is also important because elderly patients are the fastest growing population among dialysis patients and their prognosis is often poor (Holley & Davison, 2015). There is evidence from a randomized control trial showing that having ACP discussions with patients with ESRD resulted in a higher percentage of wishes being known and followed (Davison, 2011). A study from 2010 shows that advance directives were a key component for patient’s wishes being honored (Silveira, Kim, & Langa, 2010). In the case of Ms. B, she did feel a sense of control, and the ability to express her wishes allowed her family to be more comfortable in supporting her decision. ACP does have some challenges, and some will argue that there are too many gaps in the process specifically with substituted judgment (Torke, Alexander, & Lantos, 2008). There are studies that demonstrate that people change their health care preferences over time (Torke et al., 2008), and if so, how is one to know what they would truly want in that specific moment? There is also research that shows surrogate decision makers cannot always predict what their loved ones would want, and even with more conversation (and guided materials to have these conversations), outcomes are only slightly better (Torke et al., 2008). A common theme in the literature is that only around 25 percent of patients have an advance directive and therefore there is a need to improve the frequency of this process (Torke et al., 2014). There are several other logistical challenges with ACP specific to the renal population, such as the lack of nephrologists who discuss prognosis with patients or have end-of-life care discussions with their patients (Davison, 2011). Most dialysis patients are not aware of the poor outcomes after cardiopulmonary resuscitation and very few have “do not resuscitate” orders. Most dialysis patients do not have advance directives, yet 20 percent to 25 percent stop dialysis prior to dying. The majority of these patients were not capable at the time of making decisions, meaning that their family or surrogate decision maker had to make this choice for them. According to some studies, appointed surrogates do not accurately predict patient’s end-of-life care wishes (Shalowitz, Garrett-Mayer, & Wendler, 2006). Davison (2011) mentioned that there are no standards for how to have an ACP discussion for patients with advanced kidney disease. There is a fear of taking away hope, and there is lack of training for how to have these conversations. Davison raised real logistical challenges that I feel comfortable validating from personal experience in an acute care hospital. These conversations are not happening frequently enough, and there is very little training that occurs. Currently there are no official standards or guidelines in place at the hospital where I work for when and how to initiate this discussion. More efforts should be made to create clear standards and guidelines for ACP for patients with ESRD. A study published in the American Journal of Kidney Diseases looked at the efficacy of an ACP intervention to see how well it prepared dialysis patients for end-of-life decision making and bereavement outcomes for surrogates (Song et al., 2015). Up until this publication, very few clinical trials looked at longer-term outcomes for ACP. Patients with ESRD have high mortality rates, and although dialysis prolongs life, it does not necessarily improve its quality. Experts feel that patients with ESRD should have end-of-life care conversations with clinicians and their surrogates to express how they feel about death. Most often, these discussions occur very close to death and focus on advance directives (Song et al., 2015). In this study, researchers used an intervention called SPIRIT (an acronym for Sharing Patient’s Illness Representations to Increase Trust). The first aim of this intervention is to get a clear sense from patients of how they understand their illness and symptoms. In the article, Song et al. (2015) stated, SPIRIT sessions establish comprehension of the cognitive, emotional, and spiritual facets of the patients’ representation (understandings) of their illness, laying the groundwork for the interventionist to provide individualized information such as the effectiveness of mechanical supports at the end of life and to aid patients in examining their own values about such supports. (p. 814) This intervention takes an individualized approach to ACP. During a pilot study, SPIRIT had a positive effect on patients and surrogates for end-of-life care decision making. The SPIRIT intervention consisted of two sessions, and both included the patient and the surrogate. The interventionists were nurses who had training in both ESRD and end-of-life care. During the first intervention, which took place in the dialysis unit, the interventionist aimed to help the surrogate prepare for being a decision maker and for the emotional burden of end-of-life decision making by actively involving the surrogate in the discussion. A goals-of-care document was completed at the end of the session to indicate the patient’s preferences. (Song et al., 2015, p. 814) It is clear that the first session really focused on preparing both the patient and the surrogate for the end of life. During the second session, which was shorter and conducted in the patient’s home, the goals-of-care document and resuscitation preferences were discussed. At the end of the second session the interventionist reviewed the patient’s preferences, including their resuscitation status, and offered their help with the advance directive. This information was shared with the dialysis staff, and the document became part of the patient’s medical record (Song et al., 2015). This intervention is far more detailed and sophisticated than most ACP interventions. The SPIRIT intervention was compared with usual care. Usual care consisted of patients being provided with information on advance directives on their first day of dialysis, encouraged to fill it out, and the social worker answered questions about life-sustaining therapy. A physician or nurse practitioner would review the resuscitation status. Ultimately SPIRIT had positive outcomes with patient and surrogate preparedness for end-of-life decision making and surrogate bereavement outcomes (Song et al., 2015). During the one-year follow-up of this study, surrogates showed less depression, anxiety, and posttraumatic stress if they participated in SPIRIT (Scherer & Holley, 2015). This model shows a crucial need to have an in-depth ACP intervention for patients with ESRD. In summary, ACP is not a perfect science, but it can have tremendous benefit. The field of ACP, specifically for dialysis patients, would benefit from more research and more guided clinical interventions for the renal staff. In the case of Ms. B and throughout the SPIRIT intervention, we can see that if we speak to patients and families about their values and views on end-of-life care in advance, then we allow the patients to advocate for themselves during a time when they may become incapacitated. This ultimately increases patient autonomy, allows the care team to hear and respect the patient’s voice, and decease the burden for the surrogate during the end-of-life care process. References Davison, S. N. ( 2011). Integrating palliative care for patients with advanced chronic kidney disease: Recent advances, remaining challenges. Journal of Palliative Care,  27, 53– 61. Davison, S. N., & Torgunrud, C. ( 2007). The creation of an advance care planning process for patients with ESRD. American Journal of Kidney Diseases,  49, 27– 36. Google Scholar CrossRef Search ADS   Goff, S. L., Eneanya, N. D., Feinberg, R., Germain, M. J., Marr, L., Berzoff, J., & Unruh, M. ( 2015). Advance care planning: A qualitative study of dialysis patients and families. Clinical Journal of the American Society of Nephrology,  10, 390– 400. Google Scholar CrossRef Search ADS   Holley, J. L., & Davison, S. N. ( 2015). Advance care planning for patients with advanced CKD: A need to move forward. Clinical Journal of the American Society of Nephrology,  10, 344– 346. Google Scholar CrossRef Search ADS   Scherer, J. S., & Holley, J. L. ( 2015). Improving advance care planning and bereavement outcomes. American Journal of Kidney Diseases,  66, 735– 737. Google Scholar CrossRef Search ADS   Shalowitz, D. I., Garrett-Mayer, E., & Wendler, D. ( 2006). The accuracy of surrogate decision makers. Archives of Internal Medicine,  166( 5), 493– 497. Google Scholar CrossRef Search ADS   Silveira, M. J., Kim, S.Y.H., & Langa, K. M. ( 2010). Advance directives and outcomes of surrogate decision making before death. New England Journal of Medicine,  362, 1211– 1218. Google Scholar CrossRef Search ADS   Song, M.-K., Ward, S. E., Fine, J. P., Hanson, L. C., Lin, F.-C., Hladik, G. A., et al.  . ( 2015). Advance care planning and end-of-life decision making in dialysis: A randomized controlled trial targeting patients and their surrogates. American Journal of Kidney Diseases,  66, 813– 822. Google Scholar CrossRef Search ADS   Torke, A. M., Alexander, G. C., & Lantos, J. ( 2008). Substituted judgment: The limitations of autonomy in surrogate decision making. Journal of General Internal Medicine,  23, 1514– 1517. Google Scholar CrossRef Search ADS   Torke, A. M., Sachs, G. A., Helft, P. R., Montz, K., Hui, S. L., Slaven, J. E., & Callahan, C. M. ( 2014). Scope and outcomes of surrogate decision making among hospitalized older adults. JAMA Internal Medicine,  174, 370– 377. Google Scholar CrossRef Search ADS   © 2017 National Association of Social Workers http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Health & Social Work Oxford University Press

Advance Care Planning for Patients with End-Stage Renal Disease

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Oxford University Press
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© 2017 National Association of Social Workers
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0360-7283
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1545-6854
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Abstract

Advance care planning (ACP) may seem straightforward to some. However, for many people this is a challenging topic to discuss and a complex landscape to navigate. This work can be time consuming and emotionally charged, requiring the collaboration of several team members for positive outcomes to result. As a renal social worker in an acute care setting, I see ACP surfacing frequently as a discussion topic. I have seen cases ranging from patients not participating in any ACP to very detailed ACP documentation. This Viewpoint will discuss ACP, explore both the negatives and positives of ACP, and focus in on a study that found a certain model for ACP to be successful. Throughout this text, I will reference the case of Ms. B to help further demonstrate that ACP is a valuable tool for patients with chronic kidney disease, despite some challenges and drawbacks. When working with these patients, the aim is to protect and promote patient autonomy during times of high vulnerability. To prepare for a discussion of ACP in greater depth, it is crucial to define the language. According to Davison and Torgunrud (2007), ACP is a “process that involves understanding, reflection, communication, and discussion between a patient, family/health care proxy, and staff for the purpose of prospectively identifying a surrogate, clarifying preferences, and developing individualized plans for care near the end of life” (p. 28). It is clear from this definition that ACP is not simply completing documentation and also requires a considerable amount of thought and discussion. From this definition it is evident that one must first identify a surrogate and then discuss end-of-life care preferences with that designated person. A recent study showed that filling out standardized ACP forms is not enough, dialysis patients require greater discussion, and withdrawal of dialysis should be a part of that discussion (Goff et al., 2015). ACP encourages people to advocate for their personal values around end of life, which can incorporate one’s individual culture and medical diagnoses (Davison & Torgunrud, 2007). The word “advance” in ACP implies that these wishes come into effect once the patient lacks the capacity and can no longer advocate for himself or herself (Davison & Torgunrud, 2007). ACP is a broader term that advance directives, living wills, and code status (for example) may fall under, but ACP can still be successful without such documents (Davison & Torgunrud, 2007). In the case of Ms. B, a 92-year-old woman with end-stage renal disease (ESRD), ACP was an empowering intervention that ultimately guided her children to act in her stated best interest. Ms. B came to the hospital with nausea and weakness, and she generally felt unwell. She had been followed in the outpatient Kidney Care Clinic, and it was well known that she had stage 5 kidney disease. With her consent she was placed on hemodialysis and had seven treatments over the course of her hospitalization, which she tolerated very poorly. She expressed a clear wish not to continue with hemodialysis. She wanted to undergo medical management of ESRD and focus on quality of life rather than quantity. Ms. B presented as a capable woman and the medical team felt that she was able to make her own decisions. As the social worker for this case, I was asked to organize a family meeting with her children to review her preferences for end of life and to make plans moving forward. The attending physician for this case was rather anxious about how her family would respond to her wishes. Despite him knowing that Ms. B was mentally capable, there was this underlying fear that perhaps she did not fully appreciate the consequences of stopping the dialysis. During the meeting it was clear that her children supported her decision and respected her choices. Ms. B expressed that she wanted to enjoy whatever remaining time she had left, free of any life-sustaining therapy. She went home with community supports, and I helped facilitate a palliative care referral so that a palliative care doctor would do home visitations. She walked out of the hospital on her own, with the support of her children and a smile on her face. Five months after her discharge, she passed away at home. Up until two weeks before her passing, she maintained her independence. In this case it is evident that ACP allowed her to voice her values and helped her maintain her autonomy and ultimately die with a sense of control. A key component of ACP is to respect patient autonomy in the case of incapacity (Davison & Torgunrud, 2007). To be able to advocate for one’s care wishes in advance is particularly important during a medical crisis, a reality for patients with ESRD, because this will help guide the medical team and family. Davison and Torgunrud (2007) summarized the importance of ACP when they stated, “There is growing evidence that this concept of ACP is valuable to patients with ESRD because it allows them to prepare for death, strengthen relationships with loved ones, achieve a sense of control, and relieve burdens placed on others” (p. 28). Not only does ACP allow patients to have a real influence on their own care decisions, it can help relieve some of the stress placed on the surrogate decision maker. ACP is also important because elderly patients are the fastest growing population among dialysis patients and their prognosis is often poor (Holley & Davison, 2015). There is evidence from a randomized control trial showing that having ACP discussions with patients with ESRD resulted in a higher percentage of wishes being known and followed (Davison, 2011). A study from 2010 shows that advance directives were a key component for patient’s wishes being honored (Silveira, Kim, & Langa, 2010). In the case of Ms. B, she did feel a sense of control, and the ability to express her wishes allowed her family to be more comfortable in supporting her decision. ACP does have some challenges, and some will argue that there are too many gaps in the process specifically with substituted judgment (Torke, Alexander, & Lantos, 2008). There are studies that demonstrate that people change their health care preferences over time (Torke et al., 2008), and if so, how is one to know what they would truly want in that specific moment? There is also research that shows surrogate decision makers cannot always predict what their loved ones would want, and even with more conversation (and guided materials to have these conversations), outcomes are only slightly better (Torke et al., 2008). A common theme in the literature is that only around 25 percent of patients have an advance directive and therefore there is a need to improve the frequency of this process (Torke et al., 2014). There are several other logistical challenges with ACP specific to the renal population, such as the lack of nephrologists who discuss prognosis with patients or have end-of-life care discussions with their patients (Davison, 2011). Most dialysis patients are not aware of the poor outcomes after cardiopulmonary resuscitation and very few have “do not resuscitate” orders. Most dialysis patients do not have advance directives, yet 20 percent to 25 percent stop dialysis prior to dying. The majority of these patients were not capable at the time of making decisions, meaning that their family or surrogate decision maker had to make this choice for them. According to some studies, appointed surrogates do not accurately predict patient’s end-of-life care wishes (Shalowitz, Garrett-Mayer, & Wendler, 2006). Davison (2011) mentioned that there are no standards for how to have an ACP discussion for patients with advanced kidney disease. There is a fear of taking away hope, and there is lack of training for how to have these conversations. Davison raised real logistical challenges that I feel comfortable validating from personal experience in an acute care hospital. These conversations are not happening frequently enough, and there is very little training that occurs. Currently there are no official standards or guidelines in place at the hospital where I work for when and how to initiate this discussion. More efforts should be made to create clear standards and guidelines for ACP for patients with ESRD. A study published in the American Journal of Kidney Diseases looked at the efficacy of an ACP intervention to see how well it prepared dialysis patients for end-of-life decision making and bereavement outcomes for surrogates (Song et al., 2015). Up until this publication, very few clinical trials looked at longer-term outcomes for ACP. Patients with ESRD have high mortality rates, and although dialysis prolongs life, it does not necessarily improve its quality. Experts feel that patients with ESRD should have end-of-life care conversations with clinicians and their surrogates to express how they feel about death. Most often, these discussions occur very close to death and focus on advance directives (Song et al., 2015). In this study, researchers used an intervention called SPIRIT (an acronym for Sharing Patient’s Illness Representations to Increase Trust). The first aim of this intervention is to get a clear sense from patients of how they understand their illness and symptoms. In the article, Song et al. (2015) stated, SPIRIT sessions establish comprehension of the cognitive, emotional, and spiritual facets of the patients’ representation (understandings) of their illness, laying the groundwork for the interventionist to provide individualized information such as the effectiveness of mechanical supports at the end of life and to aid patients in examining their own values about such supports. (p. 814) This intervention takes an individualized approach to ACP. During a pilot study, SPIRIT had a positive effect on patients and surrogates for end-of-life care decision making. The SPIRIT intervention consisted of two sessions, and both included the patient and the surrogate. The interventionists were nurses who had training in both ESRD and end-of-life care. During the first intervention, which took place in the dialysis unit, the interventionist aimed to help the surrogate prepare for being a decision maker and for the emotional burden of end-of-life decision making by actively involving the surrogate in the discussion. A goals-of-care document was completed at the end of the session to indicate the patient’s preferences. (Song et al., 2015, p. 814) It is clear that the first session really focused on preparing both the patient and the surrogate for the end of life. During the second session, which was shorter and conducted in the patient’s home, the goals-of-care document and resuscitation preferences were discussed. At the end of the second session the interventionist reviewed the patient’s preferences, including their resuscitation status, and offered their help with the advance directive. This information was shared with the dialysis staff, and the document became part of the patient’s medical record (Song et al., 2015). This intervention is far more detailed and sophisticated than most ACP interventions. The SPIRIT intervention was compared with usual care. Usual care consisted of patients being provided with information on advance directives on their first day of dialysis, encouraged to fill it out, and the social worker answered questions about life-sustaining therapy. A physician or nurse practitioner would review the resuscitation status. Ultimately SPIRIT had positive outcomes with patient and surrogate preparedness for end-of-life decision making and surrogate bereavement outcomes (Song et al., 2015). During the one-year follow-up of this study, surrogates showed less depression, anxiety, and posttraumatic stress if they participated in SPIRIT (Scherer & Holley, 2015). This model shows a crucial need to have an in-depth ACP intervention for patients with ESRD. In summary, ACP is not a perfect science, but it can have tremendous benefit. The field of ACP, specifically for dialysis patients, would benefit from more research and more guided clinical interventions for the renal staff. In the case of Ms. B and throughout the SPIRIT intervention, we can see that if we speak to patients and families about their values and views on end-of-life care in advance, then we allow the patients to advocate for themselves during a time when they may become incapacitated. This ultimately increases patient autonomy, allows the care team to hear and respect the patient’s voice, and decease the burden for the surrogate during the end-of-life care process. References Davison, S. N. ( 2011). Integrating palliative care for patients with advanced chronic kidney disease: Recent advances, remaining challenges. Journal of Palliative Care,  27, 53– 61. Davison, S. N., & Torgunrud, C. ( 2007). The creation of an advance care planning process for patients with ESRD. American Journal of Kidney Diseases,  49, 27– 36. Google Scholar CrossRef Search ADS   Goff, S. L., Eneanya, N. D., Feinberg, R., Germain, M. J., Marr, L., Berzoff, J., & Unruh, M. ( 2015). Advance care planning: A qualitative study of dialysis patients and families. Clinical Journal of the American Society of Nephrology,  10, 390– 400. Google Scholar CrossRef Search ADS   Holley, J. L., & Davison, S. N. ( 2015). Advance care planning for patients with advanced CKD: A need to move forward. Clinical Journal of the American Society of Nephrology,  10, 344– 346. Google Scholar CrossRef Search ADS   Scherer, J. S., & Holley, J. L. ( 2015). Improving advance care planning and bereavement outcomes. American Journal of Kidney Diseases,  66, 735– 737. Google Scholar CrossRef Search ADS   Shalowitz, D. I., Garrett-Mayer, E., & Wendler, D. ( 2006). The accuracy of surrogate decision makers. Archives of Internal Medicine,  166( 5), 493– 497. Google Scholar CrossRef Search ADS   Silveira, M. J., Kim, S.Y.H., & Langa, K. M. ( 2010). Advance directives and outcomes of surrogate decision making before death. New England Journal of Medicine,  362, 1211– 1218. Google Scholar CrossRef Search ADS   Song, M.-K., Ward, S. E., Fine, J. P., Hanson, L. C., Lin, F.-C., Hladik, G. A., et al.  . ( 2015). Advance care planning and end-of-life decision making in dialysis: A randomized controlled trial targeting patients and their surrogates. American Journal of Kidney Diseases,  66, 813– 822. Google Scholar CrossRef Search ADS   Torke, A. M., Alexander, G. C., & Lantos, J. ( 2008). Substituted judgment: The limitations of autonomy in surrogate decision making. Journal of General Internal Medicine,  23, 1514– 1517. Google Scholar CrossRef Search ADS   Torke, A. M., Sachs, G. A., Helft, P. R., Montz, K., Hui, S. L., Slaven, J. E., & Callahan, C. M. ( 2014). Scope and outcomes of surrogate decision making among hospitalized older adults. JAMA Internal Medicine,  174, 370– 377. Google Scholar CrossRef Search ADS   © 2017 National Association of Social Workers

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Health & Social WorkOxford University Press

Published: Feb 1, 2018

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