Advance Care Planning
Abstract and Keywords
Advance care planning (ACP) is the process of determining and documenting desired wishes for the end of one’s life. Referred to by such terms as end-of-life planning, advance (health) directives, and living wills, ACP is a relatively new concept within our society, having emerged as a social, political, and ethical issue in the United States only since the 1960s. Researchers and legislators have been challenged in their efforts to examine healthcare decision-making and design appropriate policy to guide practice. This article will define ACP, provide an overview of the history and evolution of the process and the associated legal and ethical issues, and describe the process with three specific populations. In addition, it examines the role of the social work profession in working with individuals and families on planning for the end of one’s life.
Advance care planning (ACP) is a process that occurs in the context of healthcare decision-making for individuals and families. ACP involves learning about decisions that may need to be made in the future, considering possible options before the decisions must be made, and communicating preferences about the decisions to others (NIA, 2014). This key word in this term is advance, as individuals are able to consider medical issues or events that have not yet presented themselves. By engaging in ACP, healthcare wishes can be made known if individuals lose their ability to make and communicate such decisions at a later time. ACP occurs between individuals and their healthcare providers, family members, and trusted friends and formal and informal caregivers, whereby medical wishes are discussed and documented (CDC, 2014). By facilitating open communication between patients and healthcare providers, the ACP process allows individuals to take an active role in their healthcare and promotes treatment in accordance with patient preferences (Benson & Alldrich, 2012).
A cornerstone of ACP is the completion of healthcare advance directives. A healthcare advance directive is generally any document in which individuals provide instructions about healthcare decisions. Information provided in advance directives may stipulate both treatment that is preferred and treatment that is unwanted (ABA, 2011). Issues that are commonly addressed in advance directives include cardiopulmonary resuscitation, ventilator use, artificial nutrition (“tube feeding”) and hydration, and comfort care (NIA, 2014). To make educated decisions about these life-sustaining procedures and certain types of care, the ACP process incorporates discussion and education about one’s medical status and disease trajectory.
Another important component of ACP is determining the person or persons who will make important medical decisions for individuals if they are no longer competent to make and/or communicate such decisions. This representative is designated by the individual and referred to as a healthcare proxy, durable power of attorney for healthcare, surrogate, or agent (ABA, 2011). The appointing of a trusted individual to make decisions provides physicians and other healthcare providers with an individual who can communicate the patient’s care preferences effectively. A critical aspect of ACP is open dialogue between individuals and their proxy to ensure that the proxy fully understands the individuals’ wishes. Whereas the completion of an advance directive may address a finite number of medical scenarios and preferences, the appointing of a healthcare proxy ensures that a trusted individual will dictate decisions for any medical scenarios that arise during a person’s incapacitation. The assigning of a healthcare proxy and completion of a healthcare advance directive may or may not be specified on the same legal document (ABA, 2011).
ACP is best conceptualized as a process rather than a finite event. Decisions that individuals make during ACP sessions may be revisited periodically, as life events and personal values can change personal preferences for medical treatments (NIA, 2014; ABA, 2011). A change in medical condition is also a compelling reason to update healthcare advance directives (Black & Csikai, 2015). The ABA (2011) recommends revisiting one’s medical treatment wishes whenever one or more of the following five events occurs, referred to as “the Five D’s”: (a) a new decade in age is reached, (b) the death of a loved one, (c) divorce, (d) diagnosis of a significant medical condition, and (e) decline in medical condition or functioning. An important aspect of the ACP process is ensuring that one’s healthcare proxy is made aware of changes in care preferences, in addition to one’s primary healthcare provider and family (NIA, 2014).
Background and Legal History
The notion of advance care planning (ACP) is a relatively new phenomenon in the vast history of medicine. Coupled with traditional medical ethics that stipulate the maintenance of life, major advances in medicine that occurred only decades ago prompted individuals to carefully consider the medical care available to them. As Sabatino (2010, p. 213) states, “Technological developments in medicine during the 1960s and 1970s thrust medicine into a new world where for the first time, it often became difficult to distinguish saving a life from prolonging suffering and death.” Specifically, the advent of cardiopulmonary resuscitation (CPR) in the early 1960s allowed the revival of individuals whose heartbeat and breathing had ceased for the first time in history (Kouwenhoven, Jude, & Knickerbocker, 1960). Physicians began using CPR for any patient experiencing cardiopulmonary arrest, despite poor survival rates and consequences such as brain damage (Ewanchuk & Brindley, 2006). The medical profession increasingly recognized that CPR was not indicated in all clinical scenarios, and concerns were raised about patient exclusion from the decision-making process (Ewanchuk & Brindley, 2006). As such, patient and family involvement in medical decision-making subsequently expanded, along with the concept of discussing and officially documenting one’s wishes.
Medical advances and related concerns about life and death matters ushered in the emerging field of bioethics in the late1960s (Callahan, 1973). Bioethics, the philosophical study of ethics in medicine, emphasized the disadvantages, inconveniences, and harm of certain scientific and medical developments (Borry, Schotsmans, & Dierickx, 2005). Early bioethicists and pioneering organizations in the field, such as the Hastings Center and the Kennedy Institute of Ethics at Georgetown University, called attention to a variety of ethical issues in medicine, such as abortion, human experimentation, and the use of life-sustaining treatment (Borry, Schotsmans, & Dierickx, 2005; Reich, 1996). The growing field of bioethics was a key factor in the emergence of ACP. ACP law and policy dates back to the late 1960s with the emergence of healthcare advance directives. The Euthanasia Society of America proposed the first advance directive in 1967 (Glick, 1991). Luis Kutner, a human-rights lawyer who represented the society, stated that “the law provides that a patient may not be subjected to treatment without his consent” (Kutner, 1969, p. 550). The challenge that arose for the society, however, was situations involving patients who could no longer make healthcare decisions for themselves. To address the issue, Kutner advised individuals to indicate ahead of time in writing the degree of treatment to which they would consent. The document on which treatment preferences were made known was referred to by many names, including the following: “living will,” “a declaration determining the termination of life,” “testament permitting death,” and “declaration for bodily autonomy” (Kutner, 1969, p. 551). The document was to be notarized, but it could be revoked at any time prior to the individual reaching a comatose state.
In 1976, with the enactment of the Natural Death Act, California adopted the first living will statute (Greaves, 1989). This law outlined the rights and responsibilities of both patients and physicians in the context of terminal disease and injury. With the creation of the “Directive to Physicians,” the law allowed individuals to instruct physicians to withhold or withdraw life-sustaining medical treatment. Likewise, the law provided statutory immunity to physicians if patients’ wishes were adhered to in good faith (Sabatino, 2010). Though the law spoke to the roles of both patient and physician, the underlying ethical principle of this legislation was patient autonomy; the law provided individuals the power to make and communicate healthcare decisions while competent and prevent indignity and suffering (Greaves, 1989). In naming this legislation the “Natural Death Act,” the California legislature sought to distinguish between a natural death and an artificially prolonged dying process involving technology and machines (Winslade, 1976).
The passage of California’s living will statute marked the beginning of an era during which a multitude of ACP legislation was passed in the United States. In the following years, the number of laws pertaining to living wills snowballed, whereby 41 states had adopted such laws by 1986 (Glick, 1991). Shortcomings of living wills, however, became increasingly apparent to both lawmakers and the general public, particularly regarding the documents’ inability to address a wide range of medical scenarios and corresponding decisions. As such, states were prompted to turn their attention to a different legal strategy traditionally used for matters related to property—the durable power of attorney (Sabatino, 2010). States began enacting special statutes pertaining specifically to powers of attorney for healthcare or adding proxy provisions to existing living will statutes. All 50 states had enacted some version of a statute establishing a durable power of attorney for healthcare by the end of 1997 (Commission on Law and Aging, 1998). Legislation pertaining to Do-Not-Resuscitate orders also emerged during this time (Sabatino, 2010); for a comparison of ACP policy in the United States and United Kingdom, see Stein and Fineberg (2013).
Throughout the evolution of ACP legislation, the federal legislative role remained minimal, with the majority of developments proceeding predominantly at the state level. The most salient exception, however, was the Patient Self-Determination Act (PSDA) of 1990, which was part of the Omnibus Budget Reconciliation Act (Public Law No. 101-508, sec. 4206 and 4751, 104 Stat. 1388, 1388-115, and 1388-204). The PSDA holds Medicare and Medicaid provider healthcare organizations responsible for providing information to patients about their right to engage in medical decision-making and to complete advance directives. Specifically, hospitals, hospices, home health agencies, skilled nursing facilities, and health maintenance organizations must inform individuals of their right “to make decisions regarding their medical care, including the right to accept or refuse medical or surgical treatment and the right to formulate advance directives” (PSDA Section 4206). The PSDA also mandated these organizations to maintain policies and procedures involving advance directives, document whether patients have completed advance directives, and comply with state advance directive laws (Ulrich, 1999). The 1990 U.S. Supreme Court case Cruzan v. Director, Missouri Department of Health features prominently in the background of this law, as the case coincided with its creation and involved a 25-year-old individual in a persistent vegetative state whose family was arguing for her “right to die” (Annas, 1990).
The most recent federal involvement in ACP involves the healthcare reform bill called the Patient Protection and Affordable Care Act (ACA), signed into law in 2010 by President Barack Obama. In 2009, the U.S. House of Representatives and Senate drafted healthcare bills that eventually became the ACA. The House version of the bill included a provision that would have authorized Medicare to pay physicians to counsel patients on living wills, healthcare advance directives, and end-of-life care options; the provision was sponsored by a bipartisan group of representatives (Institute of Medicine, 2015). This provision was originally written to overcome barriers to ACP and placate individual and public fears about discussing one’s own death (Marco et al., 2012).
However, the provision met criticism from both the media and other legislators, some of whom “claimed the provision would lead to government-sponsored euthanasia and heartless ‘death panels’ that would adjudicate who shall live” (Institute of Medicine, 2015, p. ix). The resulting controversy resulted in the removal of the provision from the bill. In 2010, the provision was reincluded in regulations implementing the ACA but was again removed from the legislation in 2011 due to the rekindled controversy (Tinetti, 2012; Marco et al., 2012; Frankford, 2015). Furthermore, “[t]he inflammatory language surrounding ‘death panels’ that surfaced during the Affordable Care Act debate left legislators wary of addressing policies perceived as promoting end-of-life care” (Parikh, Kirch, Smith, & Temel, 2013, p. 3). The provision was never incorporated into the law (Institute of Medicine, 2015).
Though the ACA does not establish a mechanism for compensating clinicians for time spent engaging in ACP, reimbursement for this process has emerged via other avenues. For example, “CMS (Centers for Medicare and Medicaid Services) is finalizing its proposal that supports patient- and family-centered care for seniors and other Medicare beneficiaries by enabling them to discuss advance care planning with their providers” (CMS, 2015, para. 7). As individuals live increasingly longer and technology advances, laws related to ACP will continue to evolve.
Models for ACP Initiatives
Various ACP initiatives have been developed across the primary, palliative, and nursing home care settings (e.g., Blackford & Street, 2012; Bomba & Vermilyea, 2006; Caplan, Meller, Squires, Chan, & Willett, 2006; Ramasaroop, Reid, & Adelman, 2007). One of the key components of ACP initiatives in various settings is the discussion about medical decisions and end-of-life care. Baron, Hodgson, and Walshe (2015, p. 693) stated that “it is important that the person initiating or responding to discussions about end of life care preferences is appropriately trained, with sufficient knowledge and skill to engage in a meaningful process and answer questions appropriately.”
One model in which this occurs is called Respecting Choices, an internationally recognized, evidence-based model developed in La Crosse, Wisconsin (Hammes, Rooney, & Gundrum, 2010). The model emphasizes a systematic care-transforming approach to ACP rather than the basic completion of an advance directive document (Gundersen Health System, 2015). The systemwide initiative is referred to as “an ACP microsystem . . . [that] organizes a group of people to elicit, understand, document, and honor a patient’s preferences about future medical care” (Hammes, Rooney, & Gundrum, 2010, p. 1250). Respecting Choices promotes an organized approach to ACP consisting of First Steps, Next Steps, and Last Steps.
The First Steps component of the Respecting Choices model is appropriate for adults of all ages. The goals of ACP at this stage include appointing a trusted individual to serve as one’s healthcare proxy, completing a healthcare advance directive, and learning of the importance of ACP. The advance directive completed in this stage should specify preferences related to life-sustaining treatment in the event of a severe neurologic disorder in which recovery is unlikely. This stage of ACP is meant to be integrated into routine and preventive care early in the continuum of healthcare, thereby normalizing and orienting individuals to the concept and process of ACP (Gundersen Health System, 2015).
The Next Steps stage of the Respecting Choices model is designed for individuals who have chronic, progressive illness and have experienced the following: functional status decline, comorbidities, increased hospitalizations, or other complications that increase the risk of inability to make decisions. This stage of planning is meant to be integrated into chronic disease management and requires greater involvement of healthcare proxies to increase their preparedness if proxy decisions become necessary. This ACP stage assists individuals in gaining an understanding of their illness progression, possible complications, and life-sustaining treatments that may be needed for the management of their disease. The outcome of Next Steps planning is a detailed written plan that specifies preferences and goals of care when severe impairment (cognitive and/or functional) or death are likely (Gundersen Health System, 2015).
The Last Steps stage of the Respecting Choices model is directed at individuals who are older and frail, or individuals who may reasonably be thought to die in the next 12 months. During this stage of ACP, explicit and timely decisions are made either by the individuals or their healthcare proxy that pertain largely to CPR, hospitalization, artificial hydration and nutrition, and comfort care. A written plan that specifies decisions made is created to formally document treatment preferences, which is then converted to a medical order using the Physician Orders for Life-Sustaining Treatment (POLST) paradigm (Gundersen Health System, 2015; Hickman, Keevern, & Hammes, 2015).
As healthcare strives to embrace ACP as best practices, greater attention is being directed to the ways in which different populations are engaging in the ACP process. While ACP is generally considered for adults and older adults, especially those with advanced chronic or terminal illnesses, the focus on ACP is expanding to other populations, specifically those who are younger and incarcerated. In the following section, a broad examination of ACP among older adults and adults specifically with dementia will occur, followed by an overview of ACP with younger individuals and those who are incarcerated.
ACP with Patients with Serious or Chronic Illness
Chronic and terminal illnesses create medical uncertainty for the patient, as well as their family systems as care decisions and level of competency are often explored. Patients and families vacillate between examining treatment options and hope that treatments will either cure the illness or at least delay progression to being more realistic about the potential for death. Due to this uncertainty, early advance care planning (ACP) becomes a process in which patients are able to not only discuss, but to document future healthcare wishes for their families and the larger medical team.
This process is particularly important for patients with dementia, who may or may not have other health conditions. The literature on ACP and dementia frequently discusses that, in the midst of losing control over one’s healthcare status, ACP allows patients to retain control over their medical care, even as the disease progresses (Hertogh, 2006; Teno & Lynn, 1996). Coupled with the notion that older adults have a desire to communicate their medical wishes and end-of-life care desires (Murray, Sheikh, & Thomas, 2006), this research indicates that early and frequent discussions can have many positive outcomes for older adults, including fewer hospitalizations and an overall better quality of death (Detering, Hancock, Reade, & Silvester, 2010).
Models such as Respecting Choices are being implemented in many medical settings, such as nursing homes, hospitals, and hospice and palliative care programs, with the goal of engaging patients early in the disease process regarding their healthcare wishes (e.g., First Steps) and then continuing the discussion as disease progression occurs (e.g., Last Steps). In particular, early discussions about ACP with those persons with dementia are critical, as decision-making capacity diminishes with disease progression. For persons with dementia, additional discussions (e.g., during the Last Steps process) may not be able to occur, leaving families to be the voices of their loved ones’ medical care.
Van Soest-Poortvliet and colleagues (2015) examined the way in which families, physicians, and nurses addressed ACP among older adults with dementia in long-term care. Findings suggest that, while early in the admission process general discussions about CPR and hospitalization occurred, many different factors contributed to the level of detail and specificity that ACP decisions were made, including professional preference, family variables, and facility philosophy. The study suggests that physicians “transfer little to no information about patient wishes and advance treatment decisions when a patient is admitted to a nursing home” (Van Soest-Poortvliet et al., 2015, p. 987). Family involvement is particularly important for individuals with dementia, as their ability to express and communicate wishes will continue to decline. As such, researchers call for earlier and more frequent ACP discussions (Forbes, Bern-Klug, & Gessert, 2000; Hurley & Volicer, 1995). This can occur at time of diagnosis and throughout disease progression, particularly as key care decisions are being made. Skilled professionals can facilitate the discussions about ACP as broader discussions about the goals of end-of-life care occur (Van Soest-Poortvliet et al., 2015).
Researchers have established a relationship between the initiation of ACP and improved quality of death among older adults with dementia in nursing homes (Vandervoort, Houttekier, Stichele, van der Steen, & Van Den Block, 2014). Families, in particular, indicated that those patients who had engaged in ACP experienced less fear and anxiety as death approached as compared to those who had family members without ACP documents. While it is difficult to note if the improved quality of death was due to the lessened anxiety of the family versus the patient, this finding is important when considering the benefits of ACP for individuals with dementia. Vandervoort and colleagues (2014) also suggested that ACP is more than just having wishes about care documented early in the disease process. Instead, the conversation should also include an assessment of patients’ quality of death in addition to discussion about future care options. This model is consistent with the Respecting Choices initiative through the First, Next, and Last Steps process, suggesting that even if the person has dementia, continued discussion about care is essential.
ACP with Youth, Adolescents, and Young Adults
Advance care planning (ACP) is seen as a best practice for adults and older adults; however, it is not considered a common practice for adolescents and young adults to be asked about their end-of-life wishes, despite a growing body of literature indicating this population’s willingness to engage in these discussions (Hammes, Klevan, Kempf, & Williams, 2005; Hinds et al., 2005). Because many question whether youth and adolescents, in particular, have the maturity to talk about their wishes for end-of-life care, these discussions are often deferred to parents or guardians until the individual turns 18 years old. However, in 2000, the American Academy of Pediatrics called for youth and adolescents with chronic and life-threatening conditions to be included in ACP and any end-of-life discussions. As early as the mid-1990s, Ladd and Forman (1995) argued that chronically or terminally ill youth and adolescents have the emotional maturity to consider their dying process and the wishes they have about their care options. Others have suggested that not only should youth and adolescents with chronic or terminal illnesses be engaging in these discussions, but also adolescents and young adults in general should be considering their end-of-life wishes (e.g., Kapp, 2000). Such discussions would promote more frequent discussion about mortality with individuals across the lifespan.
To further examine the role of ACP in the lives of adolescents and young adults, Sanders and Robinson (2017) engaged college students in the First Steps process of the Respecting Choices initiative to identify the reactions to participating in ACP. While some students reported that increased feelings of fear and anxiety about their mortality emerged as a result of the ACP process, the students overwhelmingly expressed a sense of emotional growth from engaging in the ACP process. Similarly, the students expressed relief after they had not only identified a specific healthcare agent, but also discussed their end-of-life wishes with this individual. Given the positive results communicated from healthy young adults in this study, Sanders and Robinson (2017) suggested that young adults, particularly those who are entering medically based fields, need opportunities to engage in ACP personally, as it may assist them in these discussions professionally.
ACP with Offenders
As a growing number of individuals are serving life sentences and dying behind bars, prisons are the most recent setting in which individuals are aging in place (Moore, 2009; Prison Terminal, 2014). This increase in incarcerated individuals has resulted in the development of in-prison hospice programs throughout the country. In fact, approximately 60 hospice programs currently exist in prison settings in the United States (Prison Terminal, 2014). Despite the increased focus on end-of-life care for offenders and early references in the literature to advance directives in correctional settings (e.g., Thomas & Watson, 1998), a structured model for advance care planning (ACP) for dying offenders has yet to be fully implemented, even though most prisons have a system in which offenders have the chance to complete Do Not Resuscitate orders if desired.
Sanders, Stensland, Dohrmann, Robinson, and Juraco (2014) worked with a medical classification center (medium security correctional facility) in the Midwest to implement the Last Steps process of the Respecting Choices model. The medical classification center processes offenders upon entry into the prison system and provides care to the most medically needy offenders, such as those who need routine hospital care or ongoing dialysis, or those with complex health conditions requiring more intense intervention. Through the implementation of Last Steps, multiple barriers were identified that needed to be resolved to best meet the needs of dying offenders completing their ACP. One of the primary barriers was the support of prison staff and administration to offenders engaging in ACP. Attitudes regarding offenders in general, coupled with the lack of education about ACP and time to engage in facilitated sessions, created challenges for implementing a systemwide ACP program that could be sustained. Until education about ACP was provided and commitment was made to the importance of providing offenders with the opportunity to document their end-of-life wishes, full implementation of the ACP program could not occur.
Another significant barrier to implementing ACP in prison was the ability to honor the end-of-life wishes of the offenders (Sanders et al., 2014). Due to the restrictive nature of prisons and the primary focus on safety and security of all offenders, options for end-of-life care available to those on the outside are not available to offenders, including the use of certain nonpharmacological therapies, location of burial if family and friends are not involved, and transfers to different institutions. Offenders, like those living in nonprison settings, have wishes that are based on their personal values and beliefs about life-sustaining measures and medical interventions. In many circumstances, these values and beliefs were met with resistance due to the overall mission and purpose of prisons and the safety and security of other offenders and staff.
Another barrier was associated with the identification of a healthcare agent if family and friends are no longer in the offender’s life (Sanders et al., 2014). For a variety of reasons, offenders often do not have family and friends from the outside world in their lives, creating the opportunity for a new prison family to be formed, consisting of fellow offenders. As per prison policy, other offenders are not allowed to be healthcare agents for offenders who are dying. As a result, it is often the warden, in consultation with the medical director, who becomes the ultimate decision-maker for dying offenders. This system, along with the offenders’ distrust of authority, can create barriers for ACP, as prisoners question whether their wishes will actually be honored.
Finally, Sanders and colleagues (2014) noted that the unmet psychosocial needs of offenders affected their ability to complete ACP. The unmet needs stemmed not only from the dying process, but other emotional and psychological issues related to living behind bars and the grief associated with their crime, lost relationships, and lost dreams. Their findings suggest that until these issues could be resolved, offenders frequently struggled to be able to consider ACP and their dying process. Additional systemic barriers to ACP in prison included the documentation of ACP, the transferability of ACP documents between medical and prison systems, and the implementation of formal ACP in states that have more than one state penitentiary (Sanders et al., 2014).
Role for Social Workers
The social work Code of Ethics (NASW, 2008) has been a cornerstone of ethical social work practice since its inception in 1960. However, in recent years, social work scholars and the profession as a whole have ambitiously emphasized ethical issues in social work practice (e.g., Reamer, 2015; Chase, 2015; Reamer, 2013). Ethics in the context of healthcare in particular have been the focus of much of this scholarship (Pugh, 2015; McCormick et al., 2014; Peterson, 2012; Cummings & Bentley, 2014). This greater attempt to highlight and address ethics has enhanced social workers’ understanding of issues related to advance care planning (ACP) and has provided opportunities for greater involvement in medical ethics and decision-making.
As fundamental skills and values of the social work profession align with the overall purpose of the ACP process, social workers can contribute significantly to the facilitation of ACP discussion and implementation. Skills such as advocacy, assessment, counseling, psychotherapeutic skills, and communication are core aspects of social work practice and promote effective ACP with patients and families (Stein & Fineberg, 2013). The social work profession holds self-determination as a core ethical principle (National Association of Social Workers, 2008), which reflects the emphasis that ACP places on patient autonomy and choice. With the profession’s commitment to practicing from the systemic (both in terms of family and societally), strengths, and person-centered perspectives, social workers are well positioned to understand the relevant family and organizational dynamics associated with addressing end-of-life issues and helping individuals plan for their care. Social workers’ focus on integrating a biopsychosocial-spiritual perspective and practicing with cultural competence enables practitioners to serve as advocates for and with their clients and patients. Throughout the process of supporting ACP, social workers can also serve as educators, facilitators, and even mediators when working with individuals, families, and health professionals.
Despite the fact that the mission and skill set of the social work profession provide practitioners with the ability to facilitate ACP effectively, there are factors that can impede the ability to work successfully with clients and patients to develop their advance care plan. Heyman and Gutheil (2006) cite such potential barriers as attitudes and support related to ACP by the individual, family, and healthcare system for implementing ACP; timing of the discussion (i.e., being too early or too late in the disease process); financial constraints for the individual or organization; and organizational priorities regarding client/patient care. With the knowledge that engaging individuals, families, and the healthcare system in ACP can prove challenging and uncomfortable, social workers can strive to gain knowledge and skills specific to this area of practice. To enable the client and patient systems to better engage in the process of ACP, social workers can benefit from enhanced understanding of the following (Pomeroy, 2011; Waldrop & Meeker, 2012):
(1) One’s personal attitudes and feelings regarding working with end-of-life issues—without self-reflection, working with an individual on her or his ACP can trigger the social worker’s own memories, feelings, and fears related to the end of life, rendering the social worker an ineffective part of the care team.
(2) The stigma and beliefs associated with end-of-life issues, particularly within the context of religion, culture, societal beliefs, and values.
(3) The dynamics of grief and loss assessment and intervention, including anticipatory grief.
(4) Communicating at such a personal and intimate level with individuals, families, and providers, particularly in understanding that ACP is not a one-time event or “one-size-fits-all” experience but is a process that typically unfolds over time.
(5) The emotional intensity, uncertainty, and often-conflicted information that accompanies discussions and planning for end-of-life care.
(6) The importance of recognizing individual and family differences in values, goals, preferences, and communication styles.
While in the palliative and hospice care settings, the ability to assist in ACP has been identified as a core competency for practicing social workers (Gwyther et al., 2005), few other areas of social work practice formally recognize the role that social workers can play in the initiation of ACP and helping patients and clients experience a so-called good death. Social workers can, however, build on such basic social work skills as relationship building, communication, engagement, and assessment to demonstrate the value of ACP as a social work role by doing the following (Clabots, 2012; Davis, 2013; Pomeroy, 2011; Waldrop & Meeker, 2012):
(1) Developing knowledge of state and federal laws, organizational policies and practices, and community resources related to end-of-life planning
(2) Reaching out to individuals and families where they are emotionally and physically, and enlisting the help of invested partners (e.g., families and faith communities) to initiate a dialogue regarding end-of-life wishes
(3) Raising awareness of and providing education to individuals and their families and care partners based on cultural beliefs and values, emotional state, and physical location (e.g., hospital, care facility, and community)
(4) Viewing ACP as an important issue to address in any setting, and being prepared to assist in developing ACP documents or referring to other professionals who can facilitate the process
(5) Building a relationship with the individual and family based on trust, honesty, and timely communication while serving as a liaison among the patient, family, and professionals to help everyone involved understand the options, emotions, and questions that inevitably arise
(6) Advocating with and for individuals to help them engage in a relationship-based, shared decision-making process regarding their care
(7) Educating other professionals about ACP and helping them to address their own feelings regarding end of life
The role of social work in ACP extends beyond direct practice. Seasoned social workers can be influential within the policy arena. For example, social workers can serve as consultants in the development of ACP legislative initiatives, advocate for the passage of legislation, and participate in the drafting of regulations to implement ACP-related legislation. Testifying before legislative bodies and at regulatory hearings is yet another role in macro social work. Finally, social workers may help interpret legislative actions for practitioners and patients and families.
With societal awareness regarding ACP on the increase, new areas in which social workers can play a role are emerging. Social workers are working in the private sector for organizations that offer telephone consultations for individuals and families who want to make health-related decisions in the face of chronic and terminal illness. Such companies often work in conjunction with insurance companies. A second area that offers a potential role for the social work profession is in the physician-assisted-death debate. With more states adopting legislation to support and regulate this practice, the social work profession should be prepared to determine the contribution that individual practitioners can make in this important area. In both of these new areas, social workers bring skills for working with individuals and families, as well as at the policy level.
The importance of supporting clients and patients in planning for the end of their lives and the role that social workers can play cannot be underestimated. Social workers can be the helping professionals who provide a voice for the older adult who is nearing the end of life, the adolescent who is experiencing a terminal illness, or the incarcerated adult serving a life sentence so that she or he can gain comfort in knowing that the desired end-of-life wishes will be fulfilled.
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