Advance Care Planning: Advance Directives
Advance Care Planning
Advance care planning (ACP) is a communication process that aims to help an individual plan for future medical care if the person is unable to make his or her own medical decisions. An estimated 45%–70% of older adults facing end-of-life treatment decisions are incapable of making those decisions themselves (Institute of Medicine (IOM) 2014). ACP helps an individual prepare for a sudden unexpected illness or injury, from which the person may recover, as well as the dying process and ultimately death. The goal of ACP is to ensure that individuals receive care consistent with their expressed preferences during serious and chronic illnesses (Sudore et al. 2017). An additional goal of ACP is to ensure the desired care will help the person live well as death approaches and die in their preferred setting.
ACP empowers a person to authorize a trusted individual to make future health decisions if and only when the person cannot do so and to share personal values, beliefs, and what matters most ahead of time. ACP conversations should occur among families, loved ones, physicians, and other members of the medical team. The ACP process builds trust and establishes relationships among family, close friends, healthcare professionals, and others who will care for and be with an individual approaching death.
Advance directives (AD) are legal documents completed at the end of the ACP process that outline a plan for future care in the event a person loses the ability to make medical decisions. Advance directives are not static documents since the trusted individual identified to make medical decisions may change, and a person’s values, beliefs, and “what matters most” often evolve over time. Thus, AD should be reviewed and renewed periodically.
The healthcare proxy (HCP) or durable power of attorney for healthcare (DPAHC) is a legal document that designates a “healthcare agent” (also known as a “surrogate”) to make medical decisions on behalf of the patient in the event he or she is incapacitated for any reason, including decisions about life-sustaining treatment, but not only at the end of life.
The living will (LW) states patient’s wishes about medical care if they develop an irreversible condition that prevents them from making their own medical decisions. The LW becomes effective if a patient becomes terminally ill, permanently unconscious, or minimally conscious due to brain damage and will never regain the ability to make decisions. A LW articulates the treatments that an individual would want (or not want) at the end of life, such as ventilators, feeding tubes, or cardiopulmonary resuscitation (CPR).
Humane care for those approaching death is a social obligation not adequately met in the communities we serve. Too often, death is viewed as a medical failure rather than the final chapter of life. As a result, many people fear a protracted, technologically overtreated death, abandonment during a time of need, and profound physical and existential suffering for the person and their family (Bomba and Vermilyea 2006). The patient’s sense of abandonment is heightened by the lack of an established relationship with a primary or specialty physician, failure to address ACP as part of primary and specialty care for serious illness, and lack of coordinated care by the same physician and medical team in all care settings.
What would happen if you experienced a sudden illness that prevented you from making your own medical decisions?
How would you ensure that you receive the kind of care that you wanted?
Would your family or loved ones know enough about what you value and believe to feel comfortable making decisions about your care?
Who do you trust to make medical decisions for you if you lose the ability to make decisions?
What makes life worth living? What do you value? What are your goals for care? What matters most?
The last two questions are the two key elements to consider as part of ACP process that must be shared in discussions with family, loved ones, physician(s), and care teams.
Choosing the right HCA or DPAHC is critically important as this person will be your spokesperson, “stand in your shoes,” speak with your physician and medical care team, and make medical decisions if you lose the ability to make these medical decisions. The right HCA or DPAHC must meet legal criteria and be willing to speak on your behalf and act on your wishes; able to separate his/her own feelings from yours; live close by or be willing to come; know you well; understand what is important to you; willing to talk with you now about sensitive issues and listen to what matters most to you; able to work with those providing your care to carry out your wishes; able to handle the responsibility; and be available in the future. Most importantly, your HCA or DPAHC must be able to handle potential conflicts between your family, friends, and the medical team, as your HCA or DPAHC may be required to make decisions for you in a variety of circumstances. These situations might include those in which what matters most to you may not mesh with the values and beliefs of either your healthcare agent or your family. It is vital that you have a discussion with a potential HCA or DPAHC ahead of time to be sure you have chosen the right person.
Sharing our values, beliefs, and goals for care is equally important. We all have a personal sense of who we are, what we like to do, the degree of control we like to have, goals for our lives, and things we hope to accomplish. Many have strong opinions about what would be imperative at the very end of their lives; others wish to be sure that certain things they dislike or fear will be avoided. Frank conversations about a patient’s values may empower and inform a legally authorized HCA or DPAHC when making difficult decisions about their loved one’s care. Therefore, it is far more important to clarify personal values, beliefs, and goals for care rather than focus on the LW.
Learning about the types of life-sustaining treatment is important, but making choices ahead of time is near impossible as no one can predict their future when they are young and healthy or in the early phase of an illness and may have decades to live. As illness progresses, ACP discussions must evolve, and consideration given to creation of medical orders to ensure preferences for treatment will be followed in an emergency when the likelihood is high that the patient will lack capacity (see Advance care planning: Medical orders at the end of life in this volume.)
Unfortunately, communication about preferences frequently either does not occur or occurs very late during an individual’s illness trajectory, sometimes mere days or weeks before death (Mack et al. 2012; Bernacki and Block 2014). Conversations regarding end-of-life issues often are triggered by a patient’s health crisis such as a hospitalization or heart attack (Pfeifer et al. 2003). When discussions occur following triggering events, the patient or medical decision-maker may be too distressed to make an informed or appropriate decision about imminent care needs.
Culture change is needed. ACP is not just for older adults or people with serious illness. Initiating ACP is relevant at all ages, as no one is immune from acute illness, injury, complex chronic conditions, or death. It is helpful to introduce ACP as a communication process when a person is healthy and well and/or earlier during a patient’s illness. Framing ACP as a wellness initiative (Bomba 2005) for all individuals who have the capacity to participate in the process helps to normalize the ACP process and promote culture change. From a population health perspective, encouraging ACP discussions should be integrated into key life milestones, for example, when applying for a driver’s or marriage license or matriculating in college, etc. (IOM 2014). A multipronged public health approach is needed to enhance quality of end-of-life care for seriously ill and dying individuals. This approach must target not only ACP discussions and document completion but also patient, family, caregiver, and appointed healthcare agent education, engagement and empowerment knowledge, and clinician training regarding shared medical decision-making. Starting the ACP process early is critical.
Key Research Findings
There have not been repeated surveys about ACP practices among adults in the United States, but estimates remain in the range of 20–30% (IOM 2014). These estimates relate to completion of documents, which may not even be an HCP or a DPAHC, and also do not necessarily reflect that the critical ACP discussion has occurred. A 2012 survey by the California Health Care Foundation of 1669 Californians 18 and older found that more than three-quarters of respondents wanted to talk to their doctors about their end-of-life care wishes, yet 90% said a doctor had never asked them about those issues and only 23% had completed an advance directive (California Health Care Foundation 2012).
Excellus BlueCross BlueShield commissioned the 2008 survey of 2000 individuals 18 and older in 39 upstate New York counties to attempt to measure community-wide culture change surrounding the impact of the Community Conversations on Compassionate Care (CCCC) program. Survey results suggest that ACP completion is driven, in part, by community education and physician communications with patients. The highest rate of discussion with doctors occurred in the Rochester area (47%), where the CCCC program was first launched, compared with the Utica area (27%); similarly, healthcare proxy completion was highest in Rochester (47%) and lowest in Utica (35%). Survey responses from locations where doctors were more likely to have discussed ACP with their patients had higher completion rates of advance directives (Bomba and Orem 2015). This survey was repeated in 2017 with updated methods to capture new public preferences for survey completion, and the results were not significantly different from 2008 (Excellus BlueCross BlueShield 2017).
Similarly, accurate rates of AD completion rates and ACP conversations are not known across the globe. Cultural beliefs or values can have differing impacts on the attitudes regarding AD. If death is not a topic that is readily discussed or expressed, people may believe that it is wrong to refuse medical treatment at the end of life. As the population ages and social interests regarding ADs increase, research is increasing.
A recent study revealed an extremely low prevalence rate of AD but a high acceptance rate of AD, in the Hong Kong general population (Chan et al. 2019). In total, 2002 participants completed the survey, with only 0.5% having made AD. However, the majority of those who had heard about AD had made or intended to make AD (80.2%). The study concluded that completion of AD can be promoted by community-based AD promotion programs to raise public awareness on AD concepts. More EOL education should be made available to university students to increase their preparedness in the delivery of EOL care, and the involvement of family members is key to success in AD communication among the Chinese population (Chan et al. 2019).
A survey of adults and healthcare providers in South Korea shows that 78.8% of participants express interest in AD (Hong 2004). A recent study revealed many people in Korea have an interest in AD but that there is a need for more education regarding AD (Kim et al. 2012). In addition, there is a need for better communication between patients and caregivers to improve the end-of-life care. Future studies are needed to further examine the attitudes and preferences of healthcare providers regarding ADs compared to those of patients and caregivers (Kim et al. 2012).
A clear theme across the globe emerges. All individuals should receive care consistent with their expressed preferences during serious and chronic illnesses. ACP conversation guides in the United States address a diversity of themes regarding illness, EOL issues, and decision-making. There is a focus on the exploration of patient’s perspectives and preferences. Evidence on the translation of explorative information into specific treatment preferences and consequences for care as provided is limited (Fahner et al. 2019).
Respecting Choices (RC) is a well-known model of advance care planning intended to assist individuals with considering, choosing, and communicating their end-of-life preferences to physicians and other clinicians. The RC program showed very promising early results. Of 540 decedents in the Gundersen Lutheran Medical Center 2 years postimplementation, 85% had a written AD, which was found in the patients’ medical record in 95% of cases (Hammes and Rooney 1998). Over the years, several studies on RC and its adaptations have been reported in the literature, and there have been efforts to scale the model to the national and international levels, including partnering with the Coalition to Transform Advanced Care (C-TAC) as part of its Service Affiliate C-TAC Innovations (Korfage et al. 2017; Barehmi 2016). However, despite the promise of widespread integration, the published evidence for the RC model has not been adequately synthesized to inform its broad adoption across care settings. In a systematic review, the published literature was evaluated on the outcomes of the RC and derivative models utilizing criteria developed by the Cochrane Collaboration (MacKenzie et al. 2017). There was significant heterogeneity of outcomes examined. There is a low level of evidence that RC and derivative models increase the incidence and prevalence of AD completion and a high level of evidence that RC and derivative models increase patient-surrogate congruence in Caucasian populations (MacKenzie et al. 2017.) The evidence is mixed, inconclusive, and too poor in quality to determine whether RC and derivative models change the consistency of treatment with wishes and overall healthcare utilization in the end of life.
A study by Tierney et al. (2001) found that older patients with chronic illnesses who discussed AD with their primary care physicians showed a significantly greater satisfaction with their care than those who did not have ACP discussions. The strongest predictor of satisfaction with care was the presence of ACP discussions (Tierney et al. 2001). In a retrospective study of over 1500 decedents, bereaved family member reports showed an association between completion of an AD and greater hospice use, as well as fewer issues with communication (Teno et al. 2007). However, there were unmet pain needs and concerns about emotional support for both the patient and family (Teno et al. 2007).
Human behavior is too complex to systematically and consistently respond to one type of intervention (Prochaska and DiClemente 1984; Prochaska and Goldstein 1991). Individuals who are successful in adopting change follow an unwavering sequence of activities and attitudes prior to finally changing an undesirable lifestyle. Studies have found that people move through a series of stages when modifying behavior, such as quitting smoking or modifying diet or exercise. Similarly, people are in different stages of the ACP process, and interventions need to be designed for the appropriate stage. Wellness interventions apply the transtheoretical model of change theory. Similarly, a framework for behavior change can be applied to encouraging ACP.
It helps to recognize if an individual is ready to have an ACP discussion and complete an HCP or a DPAHC, as well as how to move them through the behavioral readiness to change process. In Stage I (Precontemplation), a person may see no need to have an ACP discussion or complete an HCP or a DPAHC. In Stage II (Contemplation), a person may see the need but has barriers or reasons why he or she has not done it. In Stage III (Preparation), a person is ready or may have already started ACP. In Stage IV (Action), a person has already filled out the HCP or DPAHC form that reflects current wishes and has had an ACP discussion. In Stage V (Maintenance), a person has a completed HCP or DPAHC that needs to be changed, and further ACP discussion is needed (Bomba and Vermilyea 2006).
The Community Conversations on Compassionate Care (CCCC) is an ACP program based on behavioral readiness to change theory that generated positive outcomes with respect to AD completion, particularly for HCP, and has been an influence on larger culture change in upstate New York with respect to ACP. Data on the success of CCCC is captured through surveys from CCCC workshop attendees, a community-wide survey of upstate New Yorkers, and healthcare proxy completion among employees at Excellus BCBS, an organization that has driven CCCC interventions among their employees and the community for nearly two decades (Bomba and Orem 2015).
Examples of Application
The RC model is a copyrighted systematic program licensed by Gundersen Health System designed to promote ACP. The model utilizes First Steps, Next Steps, and Last Steps components corresponding to different phases of life and illness trajectory (wellness, illness diagnosis, and advanced serious illness). To be certified as an RC trainer or facilitator, a 20-hour training is required. Facilitators can be trained only on First Steps, Next Steps, or Last Steps for the RC model and are trained only in Next Steps and Last Steps for disease-specific ACP (DS-ACP) and patient-centered ACP (PC-ACP) as these models are intended to be used in people who already have a serious life-limiting illness (MacKenzie).
Community Conversations on Compassionate Care (CCCC) Program
The Community Conversations on Compassionate Care (CCCC) is an example of an ACP program focused on a population health approach that applies behavioral readiness to change theory. Developed in 2001 and implemented in 2002, CCCC is designed to motivate all adults 18 years of age and older, as well as emancipated minors, to initiate ACP discussions that clarify personal values, beliefs, and goals for care; choose the right healthcare agent who will act as their spokesperson if they lose the ability to make medical decisions; and complete an HCP. CCCC uses storytelling and “Five Easy Steps.” ACP is featured in educational tools and resources including a booklet, workshop, videos, online resources, public service announcements on television and the web, and internal tracking and evaluation (Bomba 2011; Bomba and Richardson 2009).
The RC and CCCC programs have been recognized as examples of a preferred practice from the National Quality Forum for “developing and promoting healthcare and community collaborations to promote ACP and completion of advance directives for all individuals” (National Quality Forum 2006).
Future Directions of Research
Empirical research on advance care planning and end-of-life care has flourished over the past two decades in the United States, yet important questions remain unanswered. Opportunity exists for more comparative global studies. Several areas of research may prove to be fruitful.
First, additional research on the translation of explorative information into specific treatment preferences and consequences for care provided is needed. The studies conducted should include a focus on the outcomes of preference-congruent treatment and healthcare utilization. This research should evaluate the quality and effectiveness of end-of-life conversations with physicians and other clinicians within scope of practice on ensuring end-of-life preferences are honored, as well as discussions with designated medical decision-makers, family members, and loved ones. The research needs to identify the nature of the health status, prognosis, and trajectory from death and differentiate AD versus medical orders (see Advance care planning: Medical orders at the end of life in this volume.)
Second, future studies should identify factors associated with meaningful and productive conversations among family members, clinicians, legal professionals, and others who may be instrumental in shaping older adults’ ACP. Recent CMS changes reimburse physicians and other “qualified healthcare professionals” for their end-of-life conversations with Medicare beneficiaries. Other “qualified healthcare professionals” are defined as non-physician practitioners who are enrolled in the Medicare program and eligible to receive Medicare payments provided to Medicare beneficiaries. The reimbursement aims to enhance the quality of end-of-life care, but this goal is dependent on the quality of the conversations.
Third, the family structure has changed significantly over time. Future studies should consider the challenges faced by “nontraditional” families, including same-sex partnerships, cohabiting couples, living apart together (LAT) relationships, and reconfigured families in which at least one partner has children from a prior marriage. In addition, future study should focus on individuals who have no biological family members and not even a close friend available to make medical decisions in case their ability to make decisions is lost. Further, some families comprise a blending of cultures, with varying degrees of acculturation. Public policies do not keep pace with these and other social and cultural changes that is further complicated by variation in state policies in the United States and globally.
Fourth, additional research is needed on disparity based on race and socioeconomic status. The impact on ACP may change with the future cohort of older adults because of further acculturation, an array of factors that are important sources of heterogeneity even within a single racial or ethnic group, targeted ACP community interventions, and a culture shift to start ACP when an individual enters adulthood.
Fifth, it is critically important to have access to accurately completed AD and the serial discussions of patient values, beliefs, and goals if the AD is triggered because of the patient’s incapacity to make medical decisions. As the digital transformation in healthcare is accelerating, it is imperative to study the best means to ensure access to accurate documents from a population health, public health perspective.
Finally, international comparisons will help to identify relative strengths and weakness of ACP effectiveness and promotion efforts in the United States relative to other nations. ACP completion rates are considerably higher in the United States than other countries. Nonetheless, lessons for improving older adults’ quality of end-of-life care might be learned from considering alternative practices used in other nations.
Patient involvement in end-of-life decision-making is a core component of “living well” with serious illness and “dying well.” To prevent conflict and end-of-life care inconsistent with patient values, physicians and other clinicians should encourage ACP for all adults of sound mind to share and formally document their treatment preferences in AD (IOM 2014).
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