Journal of Social Work in End-of-Life & Palliative Care, 10:322–337, 2014 Copyright # Taylor & Francis Group, LLC ISSN: 1552-4256 print=1552-4264 online DOI: 10.1080/15524256.2014.975320
Barriers Associated with the Implementation of an Advance Care Planning Program in a Prison Setting SARA SANDERS and MEREDITH STENSLAND School of Social Work, The University of Iowa, Iowa City, Iowa, USA
JANE DOHRMANN Iowa City Hospice, Iowa City, Iowa, USA
ERIN ROBINSON School of Social Work, The University of Iowa, Iowa City, Iowa, USA
KIM JURACO Iowa Department of Corrections, Iowa City, Iowa, USA
Advance care planning is considered a best practice within health care. However, the extent to which planning occurs within prison settings is unknown. Through the course of implementing an advance care planning (ACP) program for aging and dying offenders at a medical classification center, multiple barriers were identified that need to be addressed systemically to ensure the medical wishes of offenders were known and honored. This article will outline the barriers and the steps that were taken to create systems change to promote and sustain advance care planning. KEYWORDS advance care planning, aging individuals, end-oflife care, offenders, prisons
INTRODUCTION Attention to advance care planning (ACP) among healthy adults and those with chronic health conditions has grown over the last two decades throughout both practice and research literature. National initiatives, such as the Received 2 July 2014; accepted 20 August 2014. Address correspondence to Sara Sanders, Ph.D., MSW, School of Social Work, The University of Iowa, 425 North Hall, Iowa City, IA 52242, USA. E-mail: [email protected] 322
Advance Care Planning in Prisons
323
Respecting Choices model originating in La Crosse, Wisconsin (Respecting Choices, 2014), are creating community-wide momentum in promoting practices and procedures that facilitate honoring individuals’ health care preferences. Despite the inherent importance of ACP, some segments of the population continue to face barriers in having health care wishes honored. This is especially true for those residing in correctional settings, such as prisons. The number of offenders ‘‘aging in place’’ in prison settings continues to grow as a result of multiple factors. Increased use of mandatory minimum sentences, ‘‘three-strikes’’ laws, and life sentences forces offenders to remain in prison for long periods of time. Likewise, the large societal influx of Baby Boomers is now aging into the ranks of old age, which is dramatically increasing the proportion of older offenders (Stal, 2013). The number of deaths annually in state prisons and jails continues to increase; offenders 55 and older comprise the largest proportion of prison deaths (Noonan & Carson, 2011). Prisons have increasingly become ‘‘home’’ to individuals with greater, more complex health care needs, including those requiring palliative care and other treatments as they prepare for the end of life. Nationwide, further discussion is on the horizon regarding the changes that must occur in prisons to meet the growing needs of offenders. The literature on end-of-life (EOL) care in prison settings has been growing over the past decade (e.g., Linder & Meyers, 2009; Hoffman & Dickinson, 2010; Stone, Papadopoulos, & Kelly, 2012), particularly as the prison hospice movement continues to expand in the United States. While prison hospice programs are one significant step in meeting the EOL care needs of offenders, ACP is another critical step, particularly for offenders who may feel they have a limited voice due to the policies and rules associated with incarceration. The purpose of this article is to identify the barriers encountered during the implementation of a systems-wide ACP program at a medical classification center located in the Midwestern region of the United States. The identification and resolution of these barriers will assist other correctional systems in enhancing the ACP process for offenders with lifelimiting health conditions.
BACKGROUND Prisons are facing a crisis as more individuals are aging in correctional systems. In 2009, approximately 10% of all offenders were serving life sentences. Those classified as having no chance of parole increased by more than 600% over the last 30 years (Moore, 2009; Nellis & King, 2009). Additionally, age 50 constitutes ‘‘old age’’ (Dubler, 1998) for incarcerated individuals, as the aging process proceeds more rapidly in prison as opposed to the general community due to high rates of medical issues stemming from
324
S. Sanders et al.
lifestyle choices, substance abuse, poorer health care prior to reaching prison, and other physical and mental health issues (Hammett, Roberts, & Kennedy, 2001). By 2025, an estimated 20% of all offenders will be over the age of 50 (Prison Terminal, 2014). The United States is home to approximately 60 prison hospice programs (Prison Terminal, 2014); California, Iowa, Kentucky, Minnesota, New York, and Oregon are seen as leaders in prison hospice programs. Although prison hospice programs are important in helping to ensure that aging offenders have their EOL care needs met, additional ACP steps are critical. For example, offenders need the opportunity to openly discuss their feelings and beliefs about death, life-sustaining treatment options, intervention preferences, and postdeath wishes related to funeral and ceremony planning. These discussions are part of death preparation and will hopefully lead to a ‘‘good death’’ even though the individual is behind bars. Thus far the literature on EOL care in prison settings has focused predominantly on prison hospice programs, not ACP. Although both community-dwelling and incarcerated individuals have an opportunity to express their EOL wishes, the thoroughness of ACP processes seems to differ notably for the two populations. Community-based ACP programs recommend that adults who possess decision-making capacity take the initial step in planning by having meaningful discussions with their family or trusted friends about their health care preferences. Additionally, ACP programs strongly encourage individuals to speak with their health care providers about EOL preferences and identify a medical decision maker to advocate for them should they become unable to communicate. As individuals age and develop chronic and life-limiting illnesses, additional conversations and health care planning are recommended. Loeb, Penrod, Hollenbeak, and Smith (2011) encouraged the active involvement of offenders in their medical care, specifically EOL decision making. Similarly, yet contrarily, offenders who are admitted to hospitals or receiving EOL care are asked if they want resuscitation should their heart and breathing stop. However, Enders, Paterniti, and Meyers (2005) identified many barriers to medical treatment and EOL decision making in prisons, including lack of trust in medical personnel, lack of continuity in medical care, offenders not feeling empowered to advocate for their own desires, lack of knowledge about medical decision making, and challenges in having the ability to communicate their wishes with family members or friends due to limited visiting opportunities. The extent to which offenders are engaged in a facilitated discussion about their health care wishes, as recommended by various entities—such as the Agency for Health Care Research and Quality (AHRQ), Respecting Choices1, The Conversation Project—remains largely unknown. While some prison settings may engage in ACP as offenders’ health declines, others may not. The following example describes initial implementation of an ACP program in a prison.
Advance Care Planning in Prisons
325
DESCRIPTION OF ACP PROGRAM AND PRISON SETTING In December of 2010, a community-wide ACP initiative was launched under the leadership of a local nonprofit hospice organization in the Midwest. The name selected for the program was Honoring Your Wishes (HYW). As part of the development of the program, HYW received consultation and training from Respecting Choices, an evidence-based ACP program located in La Crosse, WI. Respecting Choices is recognized for their systems-wide approach to honoring individuals’ health care preferences at the EOL. In their research known as the LADS II study, Hammes, Rooney, and Gundrum (2010) found that 90% of adults had written Advance Directives at death; and of those cases, 99% of the Advance Directives were in the patients’ medical records. Furthermore, 99% of patients’ health care preferences were honored at the EOL. This research provided evidence that a systematic approach to ACP can assist communities in documenting the EOL wishes of adults. Respecting Choices recommends a prescribed approach of engaging adults in ACP, known as First Steps, Next Steps, and Last Steps. Goals of First Steps include engaging and encouraging healthy adults and those with chronic conditions to (a) reflect upon their values, beliefs, and health care preferences; (b) consider the type of medical care they would want if they had a severe brain injury and were unlikely to have a full cognitive recovery: (c) select a health care agent; and (d) prepare the health care agent through facilitated discussion (Briggs, 2012). HYW initially focused on implementing First Steps throughout the local community and tested the model in a variety of settings including hospitals, independent living communities, churches, and one community senior center. The Respecting Choices Next Steps phase of ACP is designed to assist patients with advanced illness plan for their disease-specific treatment choices when their health declines and they have more complications. With the assistance of an ACP facilitator, the patient and the health care agent review goals of care and their understanding of disease progression. They then discuss options for care should complications occur along with the choices that would need to be made in worst-case scenarios. Exploring benefits and burdens of options and developing a written plan are additional components of this process. The HYW consortium has yet to implement the Next Step phase within the county. In 2013, HYW began to implement the Respecting Choices1 Last Steps ACP model and incorporated the Iowa Physician Order for Scope of Treatment (IPOST) form as a part of the process. Lasts Steps is recommended for individuals who are (a) frail and elderly; (b) have a life-limiting illness; or (c) have a chronic, critical medical condition. The IPOST was sanctioned by law in 2012 as an official medical order. Individuals may use the IPOST to
326
S. Sanders et al.
communicate health care choices across care settings, thereby helping to ensure that their choices and preferences are honored. The IPOST is also intended for individuals who are frail and elderly, have life-limiting illnesses, and who have chronic medical conditions. As a part of its mission, HYW embraced the opportunity to implement the IPOST framework. During 2013, HYW tested Last Steps in hospitals, hospices, and long-term care settings. During 2014, HYW continued to reach out to various groups in the community to promote the ACP process. Researchers had established relationships with HYW staff and with the health care personnel at the state medical and classification center. HYW staff and researchers met with the health care personnel at the medical classification center to propose implementation of the ACP model in this setting, specifically Last Steps. Medical leaders at the prison were supportive of the concept and the development of the research project then began. Within the state correctional system, the classification center serves to evaluate the medical, mental health, treatment, and educational needs of all offenders prior to them transferring to another state facility. Offenders with complex, chronic or acute needs (i.e., advanced cancer, dementia, kidney or liver failure, advanced heart disease, psychosis, etc.) may have their transfer to another prison setting delayed to ensure that their medical condition is stable. Additionally, offenders with advanced or complicated medical needs who are housed at other prisons within the state may eventually return to this facility for additional care. Such care may occur at the medical classification center only or with periodic visits to the local university hospital system. As part of the community ACP project process, organizations select team members to promote ACP in their respective locations. Projects are designed to implement ACP systems and engage people in ACP discussions. Organizations identify staff members who demonstrate facilitation and leadership skills to attend facilitator trainings and typically house a trained facilitator. Each facilitator is required to participate in 17 hours of training utilizing the Respecting Choices1 model that they are implementing. They learn how to engage individuals at various levels of education, comfort, and knowledge about ACP. Paralleling the community ACP training, the medical classification center identified staff members that would specifically focus on facilitating ACP discussions for offenders with life-limiting illnesses and chronic, critical medical conditions. The selected staff members also engaged in 17 hours of training prior to meeting with interested participants. The staff consisted of two nurses and one master’s-level social worker. They identified offenders who met eligibility criteria for Last Steps. The offenders were offered an opportunity to meet individually with a trained facilitator, discuss EOL wishes,
Advance Care Planning in Prisons
327
and complete advance directives. Prior to and throughout the project, the team met biweekly to monthly to develop and improve upon ACP structures. These 60- to 120-minute meetings entailed planning next steps for the project, debriefing sessions that occurred with offenders, and discussing systemic changes that needed to occur. During the facilitated discussions, facilitators asked offenders to reflect upon their values and beliefs, goals of care, and health care choices. The discussions included both present and future desires should a medical crisis occur. Facilitators then invited offenders to complete an IPOST. Another component of the ACP process was inviting offenders to select a health care agent who could advocate on their behalf if the offenders were not able to communicate and=or were deemed unable to make their own health care decisions. The invitation to ask someone to serve as health care agent was particularly important in the prison setting, as not everyone had social networks on the ‘‘outside’’ of the walls of the correctional facility.
BARRIERS TO ADVANCE CARE PLANNING IN CORRECTIONAL SETTINGS During the early phases of implementation, researchers identified multiple systemic barriers that impacted how ACP protocols could be implemented in the correctional setting. Barriers are expected whenever changes are proposed and made to a system, particularly a system that that has been functioning in a certain way for an extended period of time. However, some barriers are unique to the prison system given that the rules and regulations that exist in prisons are different than what is seen in other institutions. These barriers included: (a) staff support and buy-in; (b) transfer of medical orders between systems; (c) ability to honor health care wishes; (d) identification of a health care agent, or proxy; (e) unmet psychosocial needs of offenders; and (f) storage and communication of ACP forms. Examination of each of these barriers may assist other prison systems that seek to expand EOL care services for older, dying offenders through a systematic, facilitated ACP program.
Staff Support and Buy-In As part of any systems change, support from key individuals, particularly decision makers, is essential. In a prison setting, ‘‘buy-in’’ from a large array of professionals must occur, including the following prison personnel: the warden, medical director and physicians, nursing supervisors and staff, correctional counselors=social workers, correctional officers, and records personnel. Achieving such widespread buy-in was critical in the implementation of the program and presented the first barrier. These individuals not only know prison policies, but they also possess knowledge regarding other
328
S. Sanders et al.
types of system changes that have worked or failed in the past. Additionally, these individuals are aware of the unique needs and personality characteristics of each offender and understand how these distinctions may positively or adversely impact project implementation—such as trust of outsiders, manipulation, unmet psychosocial needs, and desire to help future offenders by improving systems. As part of the buy-in process, a series of meetings occurred over the course of several months with correctional staff. Specifically, the prison physician, the director of nursing, two nursing managers, a social worker, and the correctional counselor who works with special needs offenders participated in the meetings. During these meetings, researchers provided education on ACP and evidence documenting the value that an ACP initiative would present to both the offenders and larger prison system. After prison officials became invested in the initiative, the coordinator of the community-wide initiative and a researcher involved in the project obtained permission and buy-in at the state level from the Department of Corrections. These individuals submitted a written proposal and then received a letter of support documenting the Department of Correction’s interest in this project. Another critical buy-in task was securing correctional staff as ACP facilitators. Three staff individuals, identified above, were trained and provided ongoing support throughout the project. In addition to facilitating initial buy-in, mentoring the staff facilitators supported long-term sustainability within the system. Providing education about best practices in EOL care and engaging prison physicians and nursing staff were key factors in achieving correctional staff buy-in. As expected, the medical staff at the prison indicated that health care preferences were already being discussed with offenders as they arrived at the institution. However, upon further examination, researchers determined that while health care decisions were being recorded, in-depth discussions of EOL wishes were not occurring nor being routinely reviewed as the condition of the offenders changed. Instead, it was primarily offenders’ preferences regarding CPR administration in the event their heart and breathing stopped and desire for ‘‘do not resuscitate’’ (DNR) orders that were being recorded. While acknowledging that documentation of CPR and DNR preferences is important, education of the correctional staff about the best practice framework for EOL planning specifically related to the IPOST paradigm was critical. Additionally, educating the medical staff about the new IPOST form, its purpose, and differences in the IPOST paradigm compared to previous practices was essential to effective implementation. As with any buy-in, the research team encountered staff resistance including worries regarding ‘‘increased workload,’’ concerns about learning a new procedure, personal values and beliefs about the EOL and ACP process impacting implementation throughout the system, and the failure of past systems change initiatives. Staff frequently reported skepticism of the sustainability of the ACP program and noted that other ‘‘new’’ initiatives had been
Advance Care Planning in Prisons
329
difficult to sustain in the past due to the bureaucracy that existed within the correctional system. During early implementation, providing consistent reassurance and reviewing state-wide protocols were essential to reducing concerns about creating changes. Additionally, researchers encouraged medical staff to share insights and opinions regarding efficient IPOST implementation. Strategies for enhancing the communication of EOL wishes within the larger prison staff were also identified. Throughout the implementation process and during staff meetings specifically, the research team maintained open dialogue with the prison personnel about their concerns and insights.
Transfer of Medical Orders Between Systems System change that inherently calls for the development of new procedures that dictate how different situations should be addressed, presented the second barrier. Prior to implementing the ACP protocol, mobilizing prison staff and community-based medical staff about the use and importance of the IPOST form was critical. As offenders are moved from one system to the next system (i.e., hospital=appointment, transfer to a different correctional facility, parole=discharge), a variety of medical and correctional paperwork must accompany the offender. A key component of effectively using the new system for ACP was ensuring that the IPOST form, documentation of offenders’ medical wishes, ‘‘moved’’ with the offender from one system to the next system. As part of systems-wide change, prison staff and researchers developed procedures for not only removing the IPOST from the medical record and including the record in other medical paperwork, but also ensuring that the record was returned to the prison medical chart once the offender returned to the classification center. Best practices related to the IPOST paradigm advises against creating IPOST copies, as multiple copies in various locations may not be systematically updated should individuals wish to change their EOL plans. Thus, not using an original IPOST creates a risk of medical professionals adhering to outdated treatment preferences, thereby failing to honor true EOL wishes. Additionally, the team provided education to the prison staff about the implications for offenders should the IPOST not accompany them during a medical emergency. A related component associated with this barrier was the need to educate individuals from other systems where the IPOST form was included in the offenders’ paperwork. This component involved working with hospital security and the intake center at the correctional facilities to ensure awareness of the IPOST form and its purpose. Also important in managing this barrier was the decision for prison staff to conduct trainings at local hospitals on the inclusion of the IPOST in offenders’ records. Likewise, prison staff also educated new staff on hospital units who may have been unfamiliar with the IPOST form or initiative, as well as reminded
330
S. Sanders et al.
experienced staff of the addition to offenders’ records. Proactively communicating with hospital staff about the IPOST form and overall initiative facilitated the successful transfer of medical orders between systems.
Ability to Honor Care Wishes In addition to staff buy-in and medical order transfers, one of the most difficult barriers encountered during the process was determining how to honor offender wishes within the restrictive structure of the prison system. As a setting that serves to punish and rehabilitate offenders, correctional systems inherently restrict some offender liberties. Certain EOL wishes that are available to those residing on the ‘‘outside’’ are simply not an option for offenders. EOL wishes that proved difficult to honor involved use of certain nonpharmacological therapies as death approached, desire to not die within the confines of a prison, and disposition of the body should a family member not claim the remains. Additionally, some offenders wished to be transferred to a different prison for death, having resided in that prison for years prior to becoming ill and being transferred to the medical classification center for treatment needs. While the team did not wish to stifle the sharing of important elements of the offenders’ EOL wishes, prison staff had to be honest. They needed to be straightforward with offenders from the beginning of the ACP process regarding the reality of what wishes could feasibly be carried out or not based on DOC policy. Facilitating open sharing while also abiding by DOC policy posed a significant challenge for facilitators throughout the process. There was concern that notifying offenders that their wishes would not be honored may damage the rapport ACP facilitators had built with the offenders and stifle open sharing for the remainder of sessions. Because of the lack of choice that offenders face in prison settings, offenders may have perceived the inability to honor all EOL wishes as further disempowerment. Researchers and prison staff modified the ACP interview guide previously used with community-dwelling individuals to make the questions more culturally competent for the offenders. For example, some questions about burial and cremation preferences were removed from the guide, as it seemed inappropriate to ask about this issue knowing that DOC policy already stipulates what will occur. Specifically, policy states that ashes of cremated offenders will be buried at one of the state’s prisons in the event no family member or friend wishes to claim the remains. Additionally, the team consulted with the university Deeded Body Program, the local Donor Organization for the state, and the County Medical Examiner’s offices to ensure that facilitators had appropriate and accurate information to share with offenders regarding practices and procedures that occur following an offender death. Researchers and prison staff developed standard answers and clarifying responses to identified issues. Examples of such issues include
Advance Care Planning in Prisons
331
what occurs with the body should a family member not claim it, when handcuffs will be removed at a hospital should death be imminent in that setting, and policies on organ=tissue donation and body donation for research. Having direct access to accurate information assisted offenders in making informed choices about their EOL care given their incarceration status and health condition. In addition to consulting outside organizations, such as the Medical Examiner’s office, ACP facilitators systematically noted questions posed by offenders that challenged prison protocols or usual practices. Upper-level Department of Corrections staff were then consulted to determine which offender wishes were feasible. An example of a question that challenged prison policy was: ‘‘Can I return to X prison to die if I choose to stop all treatments here?’’ Another question was: ‘‘Is there any way my ashes could be spread somewhere outside the prison walls should a family member not claim them?’’ Determining the feasibility of honoring offender wishes and communicating to offenders the reality of such feasibility was a challenge throughout the process, due in part to the need to consult with senior= supervisory staff, verify policies, and clarify past practices.
Identification of a Health Care Agent A fourth barrier encountered while implementing this ACP initiative at the medical classification center was having offenders identify health care agents and addressing the situation when health care agents were unavailable. Due to a variety of reasons (i.e., desire of family, desire of offender, etc.), it was not unusual for offenders to have minimal=no contact with family members or friends, regardless of age or health status. Although offenders may have had a support network within the correctional system consisting of offenders, policy prohibited the naming of fellow offenders as health care decision makers. In the absence of an offender-selected health care agent, DOC policy dictated that the medical director would have the ultimate health care decision-making rights. However, should the offender request that a family member or friend be their health care agent, it was determined that the offender would contact the family member via email, telephone, or letter and request that the individual assume this role. When this option was not possible, the facilitator phoned the offender’s family member while the offender was present. The offenders were reminded that in some cases, even though they named someone as their health care agent, the named person may not want to assume this role, and then the DOC would resume the decision-making role. Additionally, locating family members and=or friends who had been minimally involved with the offender proved difficult at times. Family members may have moved, died, or changed phone numbers, making contact with them impossible. In some cases the offender wanted to meet with the
332
S. Sanders et al.
health care agent in person to discuss their advance directive and IPOST. Per prison policy, offenders and visitors are prohibited from bringing documents or materials into the visiting room. Thus, new procedures had to be implemented that allowed the attendant in the visiting room to obtain a copy of the health care directive and IPOST prior to the visiting period for the offender to share.
Unmet Psychosocial Needs of Offenders The fifth barrier identified was the unmet psychosocial needs of offenders with chronic and terminal health conditions. For some offenders, the diagnosis of a chronic, life-threatening illness or a terminal diagnosis represented more than the potential loss of life; this type of diagnosis confirmed the reality of dying behind bars. Additionally, many offenders hoped that even if they did die while incarcerated, their burial would occur some place other than on the prison grounds. During the course of the initial facilitated sessions, researchers and ACP facilitators recognized that some offenders were using the facilitated sessions for purposes other than ACP. Specifically, offenders used the ACP sessions as opportunities for counseling, validation, socialization, and the emotional processing of unmet needs. These significant unmet psychosocial needs seemed to stem from, not only their time behind bars, but also from the prospect of dying in a correctional setting. However, the purpose of the ACP sessions was to help them reflect upon their values and beliefs, develop goals of care, and complete the IPOST form, not to provide therapeutic support that extended beyond the scope of the ACP process. The ACP sessions provided the offenders with individualized attention, a nonjudgmental platform, and a chance to be listened to. It did appear that some offenders resisted completing the IPOST, as they realized that a completed IPOST signified the end of regular, individualized attention from the facilitator. Offenders using the ACP sessions as a form of counseling created an ethical dilemma for the facilitators. Facilitators recognized that the IPOST effectively facilitated sessions, generated valuable discussions about death and reconciliation, and initiated a life review process for some offenders. However, the purpose of the ACP sessions was to complete the IPOST form, not to provide therapeutic support that extended beyond the scope of the ACP process. Additionally, researchers and ACP facilitators periodically questioned some offenders’ motives for participating in the ACP sessions; specifically concerns arose if the offenders had legitimate concerns associated with their EOL wishes or if they were manipulating the sessions so as to spend individualized time with a particular staff person to discuss a range of topics, not all necessarily associated with the IPOST project. For those offenders who were using the sessions to address unmet psychosocial needs, a time limit was placed on the number of sessions that could occur. While a
Advance Care Planning in Prisons
333
specific number of sessions was not determined as each offender had unique needs, steps were taken to direct individuals to professionals who could provide psychosocial support as necessary. Facilitators then made referrals to the correctional counselor, staff psychologist, social worker, or chaplain for additional support.
Storage and Communication of ACP Form Information A final barrier in implementing the ACP program was determining the best location to store the IPOST and forms that document other key EOL wishes expressed by the offenders, as an offender’s medical record, both electronic and paper, may only be viewed by medical prison personnel. Thus, there was not a location to provide a summary of this information that would be seen by both the medical and nonmedical staff. Nonmedical staff includes the correctional officers responsible for monitoring offenders during medical transfers. Additionally, it includes the correctional counselors who work closely with offenders during transfer and discharges. Furthermore, simply relying on a paper copy would not suffice, as the copy would likely not reliably travel with the offender should he be transported to a different state prison. Additionally, prison staff struggled to select a location for storing the additional forms documenting other valuable information about EOL wishes ascertained during the sessions. Such examples include: desired funeral arrangements or memorial services within the prison setting, use of nonpharmacological therapies, and desired location of death, if possible. While not necessarily the most efficient option, prison staff determined that the information would be documented in both the medical and nonmedical notes to ensure that all key staff who could be involved in a medical emergency would have access to the ACP information. It was also determined that the storage of the original ACP forms and any other documentation about EOL wishes would be stored in a filing cabinet housed in a social work office. The social worker who served as an ACP facilitator worked with the hospice program and was involved with offenders as they neared the end of life, thus, the social worker would be able to convey crucial EOL care information to the larger medical team.
DISCUSSION As more offenders continue to age in place, the importance of ACP with this population will only increase. Through the implementation of this ACP project, barriers that could hinder system implementation and sustainability were identified. As this ACP initiative was an attempt to achieve systems change, understanding the prison culture, power structures, policies and procedures, and common practices was essential during implementation. While social
334
S. Sanders et al.
workers and other health care professionals readily understand and advocate for patient rights, the prison culture is unique and does not allow for this same level of advocacy given the criminal history of offenders, institutional constraints, and overall need to ensure public safety. This aspect of the prison culture had to be honored and integrated into the ACP program for the initiative to be successful. To accommodate the cultural context of the prison, facilitator strategies, processes, and ACP protocols were modified to ensure that the ACP sessions occurred in a meaningful and relevant manner. Education for the Honoring Your Wishes staff and research team about the prison culture was as equally important as education for the facilitators about ACP. Without this knowledge, practices that would be deemed necessary and important for those living outside prison walls could have been unintentionally imposed into a system governed by different rules and standards. Indeed, respecting the expertise of the prison staff and offenders was critical, as they are the individuals who will continue the project beyond the pilot phase. While the researchers and Honoring Your Wishes staff possess expertise in ACP, it was the prison staff that possessed valuable information about the physical and mental health status of offenders, the involvement of their family and friends outside the prison system, cultural and religious preferences, and overall compliance with the prison system. Knowledge of such critical information assisted the facilitators to conduct successful ACP sessions with offenders and also allowed the prison staff to teach the researchers about specific issues and concerns germane to prison ACP. Throughout the early implementation process, gaining support and buy-in from key prison officials was essential since they played a role in the resolution of other barriers that were encountered throughout the project. For sustainability to occur, the prison staff—specifically the warden, medical director, and director of nursing—had to see the ‘‘value-added’’ from the ACP program for not only the offenders but the larger correctional system. Having key individuals who value and commit to the initiative has been identified as an important aspect of successful program implementation (Green & Aarons, 2011; Friedmann, Taxman, & Henderson, 2007). Additionally, research specifically on program implementation in the prison setting suggests that attaining buy-in from the correctional officers in addition to gaining buy-in from agency leaders is crucial, as officers can either facilitate or impede the logistics of implementation (Wright & Bronstein, 2007; Sanford & Foster, 2006). Effectively conveying the value of ACP and engaging committed correctional staff was essential to overcoming barriers throughout the process. The promoting of an ACP program that would lead to better overall EOL care for offenders was a timely effort given the growing attention to EOL care nationwide. Through the identification and resolution of barriers encountered during implementing a correctional ACP program, the EOL experiences of aging
Advance Care Planning in Prisons
335
and dying offenders can be enhanced. Though being incarcerated greatly decreases the amount of control one possesses, having the opportunity to openly communicate EOL wishes and being listened to allows offenders to reclaim some control. Because this process occurs primarily through facilitated discussion, prisons must first examine the extent to which their offenders are currently being engaged in meaningful EOL conversations. Where such dialogue is not occurring, efforts must be made to put systems in place that ensure offenders the opportunity to voice EOL wishes. Prisons seeking to adopt ACP procedures may consider consultation with local community hospices for ACP resources, learning about the legally recognized advance directive forms in their state, and beginning to identify prison staff that are proficient in ACP processes or are otherwise willing to learn about best practices. Developing prison staff that are knowledgeable about ACP and committed to providing quality EOL care is critical. Beyond cultivating a skilled and committed group of facilitators, prisons must aim to gain larger buy-in from the prison as a whole. Providing staff, both medical and security, with training about EOL issues and the importance of ACP will increase awareness and overall acceptance. Prisons aiming to improve ACP processes may consider educational sessions for staff during which in-house issues such as electronic documentation, medical transport procedures, and visitor room policies may be discussed and communicated. Inclusion of all prison staff will not only improve the logistics of implementing new ACP and related practices, but will also serve to increase staff buy-in. Identifying staff supportive of ACP and encouraging their leadership in providing education throughout the prison system will improve the quality of care for the rising number of aging and dying offenders.
CONCLUSION Attention to EOL care is expanding throughout the United States. The need for comprehensive EOL care for offenders residing in prisons and other correctional settings throughout the United States is growing as more individuals are aging in place behind bars. Part of this process is determining how to implement ACP programs within the structure and confines of prison settings. This article examined the barriers that were encountered while trying to implement an ACP program for offenders with advance chronic health conditions and those who are frail and elderly. The insights gained through this initiative can help others who are attempting to implement a similar initiative. In moving forward, the goal is for the program to remain sustainable at the medical classification center. The social worker at the prison has agreed to be the lead contact person for ACP. The plan is for discussion of ACP planning to occur during transitions of offenders onto the medical units or as they receive diagnoses of advance health conditions. The nurses who have been
336
S. Sanders et al.
trained as facilitators will work in conjunction with the social worker to conduct facilitated sessions to complete the IPOST. Additionally, continuing education for all medical staff and correctional officers about the importance of ACP will continue at the medical classification center. Ensuring that all staff members recognize the importance of ACP and that the honoring of EOL wishes is part of best practices for EOL care is an ongoing process. While not intentional, personal values and life experiences can influence responses to ACP. Thus, ongoing discussions about the value of ACP, despite personal beliefs and life experiences is essential. As new staff are employed at the prison, new education must delivered. Additionally, as situations occur in which the IPOST is utilized, additional education must occur as these situations may challenge preconceived attitudes and values. Finally, as this project continues to grow, steps need to occur to implement the IPOST at all correctional facilities in the state. While the medical classification center is the pilot site, offenders from other facilities can also benefit from having their EOL wishes documented and placed into their medical record.
REFERENCES Briggs, L. (2012). Helping individuals make informed healthcare decisions: The role of the advance care planning facilitator. In B. Hammes (Ed.), Having your own say: Getting the right care when it matters most (pp. 23–40). Washington, DC: Center for Health Transformation. Dubler, N. N. (1998). The collision of confinement and care: End of life care in prisons and jails. Journal of Law, Medicine, and Ethics, 26, 149–156. Enders, S. R., Paterniti, D. A., & Meyers, F. J. (2005). An approach to develop effective health care decision making for women in prison. Journal of Palliative Medicine, 8(2), 432–439. Friedmann, P. D., Taxman, F. S., & Henderson, C. E. (2007). Evidence-based treatment practices for drug-involved adults in the criminal justice system. Journal of Substance Abuse Treatment, 32(3), 267–277. Green, A. E., & Aarons, G. A. (2011). A comparison of policy and direct practice stakeholder perceptions of factors affecting evidence-based practice implementation using concept mapping. Implementation Science, 6(1), 1–12. Hammes, B. J., Rooney, B. L., & Gundrum, J. D. (2010). A comparative, retrospective, observational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem. Journal of the American Geriatrics Society, 58(7), 1249–1255. Hammett, T. M., Roberts, C., & Kennedy, S. (2001). Health-related issues in prisoner reentry. Crime and Delinquency, 47(3), 390–409. Hoffman, H., & Dickinson, G. (2010). Characteristics of prison hospice programs in the United States. American Journal of Hospice and Palliative Care, 28(4), 245–252. Linder, J. F., & Meyers, F. J. (2009). Palliative and end-of-life care in correctional settings. Journal of Social Work in End-of Life & Palliative Care, 5(1–2), 7–33.
Advance Care Planning in Prisons
337
Loeb, S. J., Penrod, J., Hollenbeak, C. S., & Smith, C. A. (2011). End-of-life care and barriers for female inmates. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 40(4), 477–485. Moore, S. (2009, July 22). Number of life terms hits record. Retrieved from http:// www.nytimes.com/2009/07/23/us/23sentence.html?pagewanted=all&_r=0 Nellis, A., & King, R. S. (2009). No exit: The expanding use of life sentences in America. Retrieved from http://www.sentencingproject.org/detail/publication. cfm?publication_id=280 Noonan, M. E., & Carson, E. A. (2011, December). Prison and jails deaths in custody, 2000–2009—Statistical tables. Retrieved from http://www.bjs.gov/content/ pub/pdf/pjdc0009st.pdf Prison Terminal. (2014). Retrieved from http://prisonterminal.com/essays%20 aging%20prison%20pop.html Respecting Choices. (2014). Respecting Choices1 advance care planning. Retrieved from http://www.gundersenhealth.org/respecting-choices Sanford, R., & Foster, J. E. (2006). Reading, writing, and prison education reform? The tricky and political process of establishing college programs for prisoners: Perspectives from program developers. Equal Opportunities International, 25(7), 599–610. Stal, M. (2013). Treatment of older and elderly inmates within prisons. Journal of Correctional Health Care, 19(1), 69–73. Stone, K., Papadopoulos, I., & Kelly, D. (2012). Establishing hospice care for prison populations: An integrative review assessing the UK and USA perspective. Palliative Medicine, 26(8), 969–978. Wright, K. N., & Bronstein, L. (2007). An organizational analysis of prison hospice. The Prison Journal, 87(4), 391–407.
Copyright of Journal of Social Work in End-of-Life & Palliative Care is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
Barriers Associated with the Implementation of an Advance Care Planning Program in a Prison Setting SARA SANDERS and MEREDITH STENSLAND School of Social Work, The University of Iowa, Iowa City, Iowa, USA
JANE DOHRMANN Iowa City Hospice, Iowa City, Iowa, USA
ERIN ROBINSON School of Social Work, The University of Iowa, Iowa City, Iowa, USA
KIM JURACO Iowa Department of Corrections, Iowa City, Iowa, USA
Advance care planning is considered a best practice within health care. However, the extent to which planning occurs within prison settings is unknown. Through the course of implementing an advance care planning (ACP) program for aging and dying offenders at a medical classification center, multiple barriers were identified that need to be addressed systemically to ensure the medical wishes of offenders were known and honored. This article will outline the barriers and the steps that were taken to create systems change to promote and sustain advance care planning. KEYWORDS advance care planning, aging individuals, end-oflife care, offenders, prisons
INTRODUCTION Attention to advance care planning (ACP) among healthy adults and those with chronic health conditions has grown over the last two decades throughout both practice and research literature. National initiatives, such as the Received 2 July 2014; accepted 20 August 2014. Address correspondence to Sara Sanders, Ph.D., MSW, School of Social Work, The University of Iowa, 425 North Hall, Iowa City, IA 52242, USA. E-mail: [email protected] 322
Advance Care Planning in Prisons
323
Respecting Choices model originating in La Crosse, Wisconsin (Respecting Choices, 2014), are creating community-wide momentum in promoting practices and procedures that facilitate honoring individuals’ health care preferences. Despite the inherent importance of ACP, some segments of the population continue to face barriers in having health care wishes honored. This is especially true for those residing in correctional settings, such as prisons. The number of offenders ‘‘aging in place’’ in prison settings continues to grow as a result of multiple factors. Increased use of mandatory minimum sentences, ‘‘three-strikes’’ laws, and life sentences forces offenders to remain in prison for long periods of time. Likewise, the large societal influx of Baby Boomers is now aging into the ranks of old age, which is dramatically increasing the proportion of older offenders (Stal, 2013). The number of deaths annually in state prisons and jails continues to increase; offenders 55 and older comprise the largest proportion of prison deaths (Noonan & Carson, 2011). Prisons have increasingly become ‘‘home’’ to individuals with greater, more complex health care needs, including those requiring palliative care and other treatments as they prepare for the end of life. Nationwide, further discussion is on the horizon regarding the changes that must occur in prisons to meet the growing needs of offenders. The literature on end-of-life (EOL) care in prison settings has been growing over the past decade (e.g., Linder & Meyers, 2009; Hoffman & Dickinson, 2010; Stone, Papadopoulos, & Kelly, 2012), particularly as the prison hospice movement continues to expand in the United States. While prison hospice programs are one significant step in meeting the EOL care needs of offenders, ACP is another critical step, particularly for offenders who may feel they have a limited voice due to the policies and rules associated with incarceration. The purpose of this article is to identify the barriers encountered during the implementation of a systems-wide ACP program at a medical classification center located in the Midwestern region of the United States. The identification and resolution of these barriers will assist other correctional systems in enhancing the ACP process for offenders with lifelimiting health conditions.
BACKGROUND Prisons are facing a crisis as more individuals are aging in correctional systems. In 2009, approximately 10% of all offenders were serving life sentences. Those classified as having no chance of parole increased by more than 600% over the last 30 years (Moore, 2009; Nellis & King, 2009). Additionally, age 50 constitutes ‘‘old age’’ (Dubler, 1998) for incarcerated individuals, as the aging process proceeds more rapidly in prison as opposed to the general community due to high rates of medical issues stemming from
324
S. Sanders et al.
lifestyle choices, substance abuse, poorer health care prior to reaching prison, and other physical and mental health issues (Hammett, Roberts, & Kennedy, 2001). By 2025, an estimated 20% of all offenders will be over the age of 50 (Prison Terminal, 2014). The United States is home to approximately 60 prison hospice programs (Prison Terminal, 2014); California, Iowa, Kentucky, Minnesota, New York, and Oregon are seen as leaders in prison hospice programs. Although prison hospice programs are important in helping to ensure that aging offenders have their EOL care needs met, additional ACP steps are critical. For example, offenders need the opportunity to openly discuss their feelings and beliefs about death, life-sustaining treatment options, intervention preferences, and postdeath wishes related to funeral and ceremony planning. These discussions are part of death preparation and will hopefully lead to a ‘‘good death’’ even though the individual is behind bars. Thus far the literature on EOL care in prison settings has focused predominantly on prison hospice programs, not ACP. Although both community-dwelling and incarcerated individuals have an opportunity to express their EOL wishes, the thoroughness of ACP processes seems to differ notably for the two populations. Community-based ACP programs recommend that adults who possess decision-making capacity take the initial step in planning by having meaningful discussions with their family or trusted friends about their health care preferences. Additionally, ACP programs strongly encourage individuals to speak with their health care providers about EOL preferences and identify a medical decision maker to advocate for them should they become unable to communicate. As individuals age and develop chronic and life-limiting illnesses, additional conversations and health care planning are recommended. Loeb, Penrod, Hollenbeak, and Smith (2011) encouraged the active involvement of offenders in their medical care, specifically EOL decision making. Similarly, yet contrarily, offenders who are admitted to hospitals or receiving EOL care are asked if they want resuscitation should their heart and breathing stop. However, Enders, Paterniti, and Meyers (2005) identified many barriers to medical treatment and EOL decision making in prisons, including lack of trust in medical personnel, lack of continuity in medical care, offenders not feeling empowered to advocate for their own desires, lack of knowledge about medical decision making, and challenges in having the ability to communicate their wishes with family members or friends due to limited visiting opportunities. The extent to which offenders are engaged in a facilitated discussion about their health care wishes, as recommended by various entities—such as the Agency for Health Care Research and Quality (AHRQ), Respecting Choices1, The Conversation Project—remains largely unknown. While some prison settings may engage in ACP as offenders’ health declines, others may not. The following example describes initial implementation of an ACP program in a prison.
Advance Care Planning in Prisons
325
DESCRIPTION OF ACP PROGRAM AND PRISON SETTING In December of 2010, a community-wide ACP initiative was launched under the leadership of a local nonprofit hospice organization in the Midwest. The name selected for the program was Honoring Your Wishes (HYW). As part of the development of the program, HYW received consultation and training from Respecting Choices, an evidence-based ACP program located in La Crosse, WI. Respecting Choices is recognized for their systems-wide approach to honoring individuals’ health care preferences at the EOL. In their research known as the LADS II study, Hammes, Rooney, and Gundrum (2010) found that 90% of adults had written Advance Directives at death; and of those cases, 99% of the Advance Directives were in the patients’ medical records. Furthermore, 99% of patients’ health care preferences were honored at the EOL. This research provided evidence that a systematic approach to ACP can assist communities in documenting the EOL wishes of adults. Respecting Choices recommends a prescribed approach of engaging adults in ACP, known as First Steps, Next Steps, and Last Steps. Goals of First Steps include engaging and encouraging healthy adults and those with chronic conditions to (a) reflect upon their values, beliefs, and health care preferences; (b) consider the type of medical care they would want if they had a severe brain injury and were unlikely to have a full cognitive recovery: (c) select a health care agent; and (d) prepare the health care agent through facilitated discussion (Briggs, 2012). HYW initially focused on implementing First Steps throughout the local community and tested the model in a variety of settings including hospitals, independent living communities, churches, and one community senior center. The Respecting Choices Next Steps phase of ACP is designed to assist patients with advanced illness plan for their disease-specific treatment choices when their health declines and they have more complications. With the assistance of an ACP facilitator, the patient and the health care agent review goals of care and their understanding of disease progression. They then discuss options for care should complications occur along with the choices that would need to be made in worst-case scenarios. Exploring benefits and burdens of options and developing a written plan are additional components of this process. The HYW consortium has yet to implement the Next Step phase within the county. In 2013, HYW began to implement the Respecting Choices1 Last Steps ACP model and incorporated the Iowa Physician Order for Scope of Treatment (IPOST) form as a part of the process. Lasts Steps is recommended for individuals who are (a) frail and elderly; (b) have a life-limiting illness; or (c) have a chronic, critical medical condition. The IPOST was sanctioned by law in 2012 as an official medical order. Individuals may use the IPOST to
326
S. Sanders et al.
communicate health care choices across care settings, thereby helping to ensure that their choices and preferences are honored. The IPOST is also intended for individuals who are frail and elderly, have life-limiting illnesses, and who have chronic medical conditions. As a part of its mission, HYW embraced the opportunity to implement the IPOST framework. During 2013, HYW tested Last Steps in hospitals, hospices, and long-term care settings. During 2014, HYW continued to reach out to various groups in the community to promote the ACP process. Researchers had established relationships with HYW staff and with the health care personnel at the state medical and classification center. HYW staff and researchers met with the health care personnel at the medical classification center to propose implementation of the ACP model in this setting, specifically Last Steps. Medical leaders at the prison were supportive of the concept and the development of the research project then began. Within the state correctional system, the classification center serves to evaluate the medical, mental health, treatment, and educational needs of all offenders prior to them transferring to another state facility. Offenders with complex, chronic or acute needs (i.e., advanced cancer, dementia, kidney or liver failure, advanced heart disease, psychosis, etc.) may have their transfer to another prison setting delayed to ensure that their medical condition is stable. Additionally, offenders with advanced or complicated medical needs who are housed at other prisons within the state may eventually return to this facility for additional care. Such care may occur at the medical classification center only or with periodic visits to the local university hospital system. As part of the community ACP project process, organizations select team members to promote ACP in their respective locations. Projects are designed to implement ACP systems and engage people in ACP discussions. Organizations identify staff members who demonstrate facilitation and leadership skills to attend facilitator trainings and typically house a trained facilitator. Each facilitator is required to participate in 17 hours of training utilizing the Respecting Choices1 model that they are implementing. They learn how to engage individuals at various levels of education, comfort, and knowledge about ACP. Paralleling the community ACP training, the medical classification center identified staff members that would specifically focus on facilitating ACP discussions for offenders with life-limiting illnesses and chronic, critical medical conditions. The selected staff members also engaged in 17 hours of training prior to meeting with interested participants. The staff consisted of two nurses and one master’s-level social worker. They identified offenders who met eligibility criteria for Last Steps. The offenders were offered an opportunity to meet individually with a trained facilitator, discuss EOL wishes,
Advance Care Planning in Prisons
327
and complete advance directives. Prior to and throughout the project, the team met biweekly to monthly to develop and improve upon ACP structures. These 60- to 120-minute meetings entailed planning next steps for the project, debriefing sessions that occurred with offenders, and discussing systemic changes that needed to occur. During the facilitated discussions, facilitators asked offenders to reflect upon their values and beliefs, goals of care, and health care choices. The discussions included both present and future desires should a medical crisis occur. Facilitators then invited offenders to complete an IPOST. Another component of the ACP process was inviting offenders to select a health care agent who could advocate on their behalf if the offenders were not able to communicate and=or were deemed unable to make their own health care decisions. The invitation to ask someone to serve as health care agent was particularly important in the prison setting, as not everyone had social networks on the ‘‘outside’’ of the walls of the correctional facility.
BARRIERS TO ADVANCE CARE PLANNING IN CORRECTIONAL SETTINGS During the early phases of implementation, researchers identified multiple systemic barriers that impacted how ACP protocols could be implemented in the correctional setting. Barriers are expected whenever changes are proposed and made to a system, particularly a system that that has been functioning in a certain way for an extended period of time. However, some barriers are unique to the prison system given that the rules and regulations that exist in prisons are different than what is seen in other institutions. These barriers included: (a) staff support and buy-in; (b) transfer of medical orders between systems; (c) ability to honor health care wishes; (d) identification of a health care agent, or proxy; (e) unmet psychosocial needs of offenders; and (f) storage and communication of ACP forms. Examination of each of these barriers may assist other prison systems that seek to expand EOL care services for older, dying offenders through a systematic, facilitated ACP program.
Staff Support and Buy-In As part of any systems change, support from key individuals, particularly decision makers, is essential. In a prison setting, ‘‘buy-in’’ from a large array of professionals must occur, including the following prison personnel: the warden, medical director and physicians, nursing supervisors and staff, correctional counselors=social workers, correctional officers, and records personnel. Achieving such widespread buy-in was critical in the implementation of the program and presented the first barrier. These individuals not only know prison policies, but they also possess knowledge regarding other
328
S. Sanders et al.
types of system changes that have worked or failed in the past. Additionally, these individuals are aware of the unique needs and personality characteristics of each offender and understand how these distinctions may positively or adversely impact project implementation—such as trust of outsiders, manipulation, unmet psychosocial needs, and desire to help future offenders by improving systems. As part of the buy-in process, a series of meetings occurred over the course of several months with correctional staff. Specifically, the prison physician, the director of nursing, two nursing managers, a social worker, and the correctional counselor who works with special needs offenders participated in the meetings. During these meetings, researchers provided education on ACP and evidence documenting the value that an ACP initiative would present to both the offenders and larger prison system. After prison officials became invested in the initiative, the coordinator of the community-wide initiative and a researcher involved in the project obtained permission and buy-in at the state level from the Department of Corrections. These individuals submitted a written proposal and then received a letter of support documenting the Department of Correction’s interest in this project. Another critical buy-in task was securing correctional staff as ACP facilitators. Three staff individuals, identified above, were trained and provided ongoing support throughout the project. In addition to facilitating initial buy-in, mentoring the staff facilitators supported long-term sustainability within the system. Providing education about best practices in EOL care and engaging prison physicians and nursing staff were key factors in achieving correctional staff buy-in. As expected, the medical staff at the prison indicated that health care preferences were already being discussed with offenders as they arrived at the institution. However, upon further examination, researchers determined that while health care decisions were being recorded, in-depth discussions of EOL wishes were not occurring nor being routinely reviewed as the condition of the offenders changed. Instead, it was primarily offenders’ preferences regarding CPR administration in the event their heart and breathing stopped and desire for ‘‘do not resuscitate’’ (DNR) orders that were being recorded. While acknowledging that documentation of CPR and DNR preferences is important, education of the correctional staff about the best practice framework for EOL planning specifically related to the IPOST paradigm was critical. Additionally, educating the medical staff about the new IPOST form, its purpose, and differences in the IPOST paradigm compared to previous practices was essential to effective implementation. As with any buy-in, the research team encountered staff resistance including worries regarding ‘‘increased workload,’’ concerns about learning a new procedure, personal values and beliefs about the EOL and ACP process impacting implementation throughout the system, and the failure of past systems change initiatives. Staff frequently reported skepticism of the sustainability of the ACP program and noted that other ‘‘new’’ initiatives had been
Advance Care Planning in Prisons
329
difficult to sustain in the past due to the bureaucracy that existed within the correctional system. During early implementation, providing consistent reassurance and reviewing state-wide protocols were essential to reducing concerns about creating changes. Additionally, researchers encouraged medical staff to share insights and opinions regarding efficient IPOST implementation. Strategies for enhancing the communication of EOL wishes within the larger prison staff were also identified. Throughout the implementation process and during staff meetings specifically, the research team maintained open dialogue with the prison personnel about their concerns and insights.
Transfer of Medical Orders Between Systems System change that inherently calls for the development of new procedures that dictate how different situations should be addressed, presented the second barrier. Prior to implementing the ACP protocol, mobilizing prison staff and community-based medical staff about the use and importance of the IPOST form was critical. As offenders are moved from one system to the next system (i.e., hospital=appointment, transfer to a different correctional facility, parole=discharge), a variety of medical and correctional paperwork must accompany the offender. A key component of effectively using the new system for ACP was ensuring that the IPOST form, documentation of offenders’ medical wishes, ‘‘moved’’ with the offender from one system to the next system. As part of systems-wide change, prison staff and researchers developed procedures for not only removing the IPOST from the medical record and including the record in other medical paperwork, but also ensuring that the record was returned to the prison medical chart once the offender returned to the classification center. Best practices related to the IPOST paradigm advises against creating IPOST copies, as multiple copies in various locations may not be systematically updated should individuals wish to change their EOL plans. Thus, not using an original IPOST creates a risk of medical professionals adhering to outdated treatment preferences, thereby failing to honor true EOL wishes. Additionally, the team provided education to the prison staff about the implications for offenders should the IPOST not accompany them during a medical emergency. A related component associated with this barrier was the need to educate individuals from other systems where the IPOST form was included in the offenders’ paperwork. This component involved working with hospital security and the intake center at the correctional facilities to ensure awareness of the IPOST form and its purpose. Also important in managing this barrier was the decision for prison staff to conduct trainings at local hospitals on the inclusion of the IPOST in offenders’ records. Likewise, prison staff also educated new staff on hospital units who may have been unfamiliar with the IPOST form or initiative, as well as reminded
330
S. Sanders et al.
experienced staff of the addition to offenders’ records. Proactively communicating with hospital staff about the IPOST form and overall initiative facilitated the successful transfer of medical orders between systems.
Ability to Honor Care Wishes In addition to staff buy-in and medical order transfers, one of the most difficult barriers encountered during the process was determining how to honor offender wishes within the restrictive structure of the prison system. As a setting that serves to punish and rehabilitate offenders, correctional systems inherently restrict some offender liberties. Certain EOL wishes that are available to those residing on the ‘‘outside’’ are simply not an option for offenders. EOL wishes that proved difficult to honor involved use of certain nonpharmacological therapies as death approached, desire to not die within the confines of a prison, and disposition of the body should a family member not claim the remains. Additionally, some offenders wished to be transferred to a different prison for death, having resided in that prison for years prior to becoming ill and being transferred to the medical classification center for treatment needs. While the team did not wish to stifle the sharing of important elements of the offenders’ EOL wishes, prison staff had to be honest. They needed to be straightforward with offenders from the beginning of the ACP process regarding the reality of what wishes could feasibly be carried out or not based on DOC policy. Facilitating open sharing while also abiding by DOC policy posed a significant challenge for facilitators throughout the process. There was concern that notifying offenders that their wishes would not be honored may damage the rapport ACP facilitators had built with the offenders and stifle open sharing for the remainder of sessions. Because of the lack of choice that offenders face in prison settings, offenders may have perceived the inability to honor all EOL wishes as further disempowerment. Researchers and prison staff modified the ACP interview guide previously used with community-dwelling individuals to make the questions more culturally competent for the offenders. For example, some questions about burial and cremation preferences were removed from the guide, as it seemed inappropriate to ask about this issue knowing that DOC policy already stipulates what will occur. Specifically, policy states that ashes of cremated offenders will be buried at one of the state’s prisons in the event no family member or friend wishes to claim the remains. Additionally, the team consulted with the university Deeded Body Program, the local Donor Organization for the state, and the County Medical Examiner’s offices to ensure that facilitators had appropriate and accurate information to share with offenders regarding practices and procedures that occur following an offender death. Researchers and prison staff developed standard answers and clarifying responses to identified issues. Examples of such issues include
Advance Care Planning in Prisons
331
what occurs with the body should a family member not claim it, when handcuffs will be removed at a hospital should death be imminent in that setting, and policies on organ=tissue donation and body donation for research. Having direct access to accurate information assisted offenders in making informed choices about their EOL care given their incarceration status and health condition. In addition to consulting outside organizations, such as the Medical Examiner’s office, ACP facilitators systematically noted questions posed by offenders that challenged prison protocols or usual practices. Upper-level Department of Corrections staff were then consulted to determine which offender wishes were feasible. An example of a question that challenged prison policy was: ‘‘Can I return to X prison to die if I choose to stop all treatments here?’’ Another question was: ‘‘Is there any way my ashes could be spread somewhere outside the prison walls should a family member not claim them?’’ Determining the feasibility of honoring offender wishes and communicating to offenders the reality of such feasibility was a challenge throughout the process, due in part to the need to consult with senior= supervisory staff, verify policies, and clarify past practices.
Identification of a Health Care Agent A fourth barrier encountered while implementing this ACP initiative at the medical classification center was having offenders identify health care agents and addressing the situation when health care agents were unavailable. Due to a variety of reasons (i.e., desire of family, desire of offender, etc.), it was not unusual for offenders to have minimal=no contact with family members or friends, regardless of age or health status. Although offenders may have had a support network within the correctional system consisting of offenders, policy prohibited the naming of fellow offenders as health care decision makers. In the absence of an offender-selected health care agent, DOC policy dictated that the medical director would have the ultimate health care decision-making rights. However, should the offender request that a family member or friend be their health care agent, it was determined that the offender would contact the family member via email, telephone, or letter and request that the individual assume this role. When this option was not possible, the facilitator phoned the offender’s family member while the offender was present. The offenders were reminded that in some cases, even though they named someone as their health care agent, the named person may not want to assume this role, and then the DOC would resume the decision-making role. Additionally, locating family members and=or friends who had been minimally involved with the offender proved difficult at times. Family members may have moved, died, or changed phone numbers, making contact with them impossible. In some cases the offender wanted to meet with the
332
S. Sanders et al.
health care agent in person to discuss their advance directive and IPOST. Per prison policy, offenders and visitors are prohibited from bringing documents or materials into the visiting room. Thus, new procedures had to be implemented that allowed the attendant in the visiting room to obtain a copy of the health care directive and IPOST prior to the visiting period for the offender to share.
Unmet Psychosocial Needs of Offenders The fifth barrier identified was the unmet psychosocial needs of offenders with chronic and terminal health conditions. For some offenders, the diagnosis of a chronic, life-threatening illness or a terminal diagnosis represented more than the potential loss of life; this type of diagnosis confirmed the reality of dying behind bars. Additionally, many offenders hoped that even if they did die while incarcerated, their burial would occur some place other than on the prison grounds. During the course of the initial facilitated sessions, researchers and ACP facilitators recognized that some offenders were using the facilitated sessions for purposes other than ACP. Specifically, offenders used the ACP sessions as opportunities for counseling, validation, socialization, and the emotional processing of unmet needs. These significant unmet psychosocial needs seemed to stem from, not only their time behind bars, but also from the prospect of dying in a correctional setting. However, the purpose of the ACP sessions was to help them reflect upon their values and beliefs, develop goals of care, and complete the IPOST form, not to provide therapeutic support that extended beyond the scope of the ACP process. The ACP sessions provided the offenders with individualized attention, a nonjudgmental platform, and a chance to be listened to. It did appear that some offenders resisted completing the IPOST, as they realized that a completed IPOST signified the end of regular, individualized attention from the facilitator. Offenders using the ACP sessions as a form of counseling created an ethical dilemma for the facilitators. Facilitators recognized that the IPOST effectively facilitated sessions, generated valuable discussions about death and reconciliation, and initiated a life review process for some offenders. However, the purpose of the ACP sessions was to complete the IPOST form, not to provide therapeutic support that extended beyond the scope of the ACP process. Additionally, researchers and ACP facilitators periodically questioned some offenders’ motives for participating in the ACP sessions; specifically concerns arose if the offenders had legitimate concerns associated with their EOL wishes or if they were manipulating the sessions so as to spend individualized time with a particular staff person to discuss a range of topics, not all necessarily associated with the IPOST project. For those offenders who were using the sessions to address unmet psychosocial needs, a time limit was placed on the number of sessions that could occur. While a
Advance Care Planning in Prisons
333
specific number of sessions was not determined as each offender had unique needs, steps were taken to direct individuals to professionals who could provide psychosocial support as necessary. Facilitators then made referrals to the correctional counselor, staff psychologist, social worker, or chaplain for additional support.
Storage and Communication of ACP Form Information A final barrier in implementing the ACP program was determining the best location to store the IPOST and forms that document other key EOL wishes expressed by the offenders, as an offender’s medical record, both electronic and paper, may only be viewed by medical prison personnel. Thus, there was not a location to provide a summary of this information that would be seen by both the medical and nonmedical staff. Nonmedical staff includes the correctional officers responsible for monitoring offenders during medical transfers. Additionally, it includes the correctional counselors who work closely with offenders during transfer and discharges. Furthermore, simply relying on a paper copy would not suffice, as the copy would likely not reliably travel with the offender should he be transported to a different state prison. Additionally, prison staff struggled to select a location for storing the additional forms documenting other valuable information about EOL wishes ascertained during the sessions. Such examples include: desired funeral arrangements or memorial services within the prison setting, use of nonpharmacological therapies, and desired location of death, if possible. While not necessarily the most efficient option, prison staff determined that the information would be documented in both the medical and nonmedical notes to ensure that all key staff who could be involved in a medical emergency would have access to the ACP information. It was also determined that the storage of the original ACP forms and any other documentation about EOL wishes would be stored in a filing cabinet housed in a social work office. The social worker who served as an ACP facilitator worked with the hospice program and was involved with offenders as they neared the end of life, thus, the social worker would be able to convey crucial EOL care information to the larger medical team.
DISCUSSION As more offenders continue to age in place, the importance of ACP with this population will only increase. Through the implementation of this ACP project, barriers that could hinder system implementation and sustainability were identified. As this ACP initiative was an attempt to achieve systems change, understanding the prison culture, power structures, policies and procedures, and common practices was essential during implementation. While social
334
S. Sanders et al.
workers and other health care professionals readily understand and advocate for patient rights, the prison culture is unique and does not allow for this same level of advocacy given the criminal history of offenders, institutional constraints, and overall need to ensure public safety. This aspect of the prison culture had to be honored and integrated into the ACP program for the initiative to be successful. To accommodate the cultural context of the prison, facilitator strategies, processes, and ACP protocols were modified to ensure that the ACP sessions occurred in a meaningful and relevant manner. Education for the Honoring Your Wishes staff and research team about the prison culture was as equally important as education for the facilitators about ACP. Without this knowledge, practices that would be deemed necessary and important for those living outside prison walls could have been unintentionally imposed into a system governed by different rules and standards. Indeed, respecting the expertise of the prison staff and offenders was critical, as they are the individuals who will continue the project beyond the pilot phase. While the researchers and Honoring Your Wishes staff possess expertise in ACP, it was the prison staff that possessed valuable information about the physical and mental health status of offenders, the involvement of their family and friends outside the prison system, cultural and religious preferences, and overall compliance with the prison system. Knowledge of such critical information assisted the facilitators to conduct successful ACP sessions with offenders and also allowed the prison staff to teach the researchers about specific issues and concerns germane to prison ACP. Throughout the early implementation process, gaining support and buy-in from key prison officials was essential since they played a role in the resolution of other barriers that were encountered throughout the project. For sustainability to occur, the prison staff—specifically the warden, medical director, and director of nursing—had to see the ‘‘value-added’’ from the ACP program for not only the offenders but the larger correctional system. Having key individuals who value and commit to the initiative has been identified as an important aspect of successful program implementation (Green & Aarons, 2011; Friedmann, Taxman, & Henderson, 2007). Additionally, research specifically on program implementation in the prison setting suggests that attaining buy-in from the correctional officers in addition to gaining buy-in from agency leaders is crucial, as officers can either facilitate or impede the logistics of implementation (Wright & Bronstein, 2007; Sanford & Foster, 2006). Effectively conveying the value of ACP and engaging committed correctional staff was essential to overcoming barriers throughout the process. The promoting of an ACP program that would lead to better overall EOL care for offenders was a timely effort given the growing attention to EOL care nationwide. Through the identification and resolution of barriers encountered during implementing a correctional ACP program, the EOL experiences of aging
Advance Care Planning in Prisons
335
and dying offenders can be enhanced. Though being incarcerated greatly decreases the amount of control one possesses, having the opportunity to openly communicate EOL wishes and being listened to allows offenders to reclaim some control. Because this process occurs primarily through facilitated discussion, prisons must first examine the extent to which their offenders are currently being engaged in meaningful EOL conversations. Where such dialogue is not occurring, efforts must be made to put systems in place that ensure offenders the opportunity to voice EOL wishes. Prisons seeking to adopt ACP procedures may consider consultation with local community hospices for ACP resources, learning about the legally recognized advance directive forms in their state, and beginning to identify prison staff that are proficient in ACP processes or are otherwise willing to learn about best practices. Developing prison staff that are knowledgeable about ACP and committed to providing quality EOL care is critical. Beyond cultivating a skilled and committed group of facilitators, prisons must aim to gain larger buy-in from the prison as a whole. Providing staff, both medical and security, with training about EOL issues and the importance of ACP will increase awareness and overall acceptance. Prisons aiming to improve ACP processes may consider educational sessions for staff during which in-house issues such as electronic documentation, medical transport procedures, and visitor room policies may be discussed and communicated. Inclusion of all prison staff will not only improve the logistics of implementing new ACP and related practices, but will also serve to increase staff buy-in. Identifying staff supportive of ACP and encouraging their leadership in providing education throughout the prison system will improve the quality of care for the rising number of aging and dying offenders.
CONCLUSION Attention to EOL care is expanding throughout the United States. The need for comprehensive EOL care for offenders residing in prisons and other correctional settings throughout the United States is growing as more individuals are aging in place behind bars. Part of this process is determining how to implement ACP programs within the structure and confines of prison settings. This article examined the barriers that were encountered while trying to implement an ACP program for offenders with advance chronic health conditions and those who are frail and elderly. The insights gained through this initiative can help others who are attempting to implement a similar initiative. In moving forward, the goal is for the program to remain sustainable at the medical classification center. The social worker at the prison has agreed to be the lead contact person for ACP. The plan is for discussion of ACP planning to occur during transitions of offenders onto the medical units or as they receive diagnoses of advance health conditions. The nurses who have been
336
S. Sanders et al.
trained as facilitators will work in conjunction with the social worker to conduct facilitated sessions to complete the IPOST. Additionally, continuing education for all medical staff and correctional officers about the importance of ACP will continue at the medical classification center. Ensuring that all staff members recognize the importance of ACP and that the honoring of EOL wishes is part of best practices for EOL care is an ongoing process. While not intentional, personal values and life experiences can influence responses to ACP. Thus, ongoing discussions about the value of ACP, despite personal beliefs and life experiences is essential. As new staff are employed at the prison, new education must delivered. Additionally, as situations occur in which the IPOST is utilized, additional education must occur as these situations may challenge preconceived attitudes and values. Finally, as this project continues to grow, steps need to occur to implement the IPOST at all correctional facilities in the state. While the medical classification center is the pilot site, offenders from other facilities can also benefit from having their EOL wishes documented and placed into their medical record.
REFERENCES Briggs, L. (2012). Helping individuals make informed healthcare decisions: The role of the advance care planning facilitator. In B. Hammes (Ed.), Having your own say: Getting the right care when it matters most (pp. 23–40). Washington, DC: Center for Health Transformation. Dubler, N. N. (1998). The collision of confinement and care: End of life care in prisons and jails. Journal of Law, Medicine, and Ethics, 26, 149–156. Enders, S. R., Paterniti, D. A., & Meyers, F. J. (2005). An approach to develop effective health care decision making for women in prison. Journal of Palliative Medicine, 8(2), 432–439. Friedmann, P. D., Taxman, F. S., & Henderson, C. E. (2007). Evidence-based treatment practices for drug-involved adults in the criminal justice system. Journal of Substance Abuse Treatment, 32(3), 267–277. Green, A. E., & Aarons, G. A. (2011). A comparison of policy and direct practice stakeholder perceptions of factors affecting evidence-based practice implementation using concept mapping. Implementation Science, 6(1), 1–12. Hammes, B. J., Rooney, B. L., & Gundrum, J. D. (2010). A comparative, retrospective, observational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem. Journal of the American Geriatrics Society, 58(7), 1249–1255. Hammett, T. M., Roberts, C., & Kennedy, S. (2001). Health-related issues in prisoner reentry. Crime and Delinquency, 47(3), 390–409. Hoffman, H., & Dickinson, G. (2010). Characteristics of prison hospice programs in the United States. American Journal of Hospice and Palliative Care, 28(4), 245–252. Linder, J. F., & Meyers, F. J. (2009). Palliative and end-of-life care in correctional settings. Journal of Social Work in End-of Life & Palliative Care, 5(1–2), 7–33.
Advance Care Planning in Prisons
337
Loeb, S. J., Penrod, J., Hollenbeak, C. S., & Smith, C. A. (2011). End-of-life care and barriers for female inmates. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 40(4), 477–485. Moore, S. (2009, July 22). Number of life terms hits record. Retrieved from http:// www.nytimes.com/2009/07/23/us/23sentence.html?pagewanted=all&_r=0 Nellis, A., & King, R. S. (2009). No exit: The expanding use of life sentences in America. Retrieved from http://www.sentencingproject.org/detail/publication. cfm?publication_id=280 Noonan, M. E., & Carson, E. A. (2011, December). Prison and jails deaths in custody, 2000–2009—Statistical tables. Retrieved from http://www.bjs.gov/content/ pub/pdf/pjdc0009st.pdf Prison Terminal. (2014). Retrieved from http://prisonterminal.com/essays%20 aging%20prison%20pop.html Respecting Choices. (2014). Respecting Choices1 advance care planning. Retrieved from http://www.gundersenhealth.org/respecting-choices Sanford, R., & Foster, J. E. (2006). Reading, writing, and prison education reform? The tricky and political process of establishing college programs for prisoners: Perspectives from program developers. Equal Opportunities International, 25(7), 599–610. Stal, M. (2013). Treatment of older and elderly inmates within prisons. Journal of Correctional Health Care, 19(1), 69–73. Stone, K., Papadopoulos, I., & Kelly, D. (2012). Establishing hospice care for prison populations: An integrative review assessing the UK and USA perspective. Palliative Medicine, 26(8), 969–978. Wright, K. N., & Bronstein, L. (2007). An organizational analysis of prison hospice. The Prison Journal, 87(4), 391–407.
Copyright of Journal of Social Work in End-of-Life & Palliative Care is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
