Abstract Although public health has traditionally been concerned with primary, secondary, and tertiary prevention, more attention needs to be focused on patient-centered care at the end of life. Improved access to quality end-of-life care can be achieved by advance care planning (ACP). In this article, we present an example of the processes of change regarding ACP and preparing advance directives (ADs) that have begun to take place in Israel in recent years. We argue that these processes derive from the synergy between legislation on the one hand, and initiatives and action by health organizations on the other. In other words, top-down action such as legislation and directives issued by the Ministry of Health in the past decade, alongside bottom-up action in the health plans and other organizations, have led to change that could not have happened without either side. In the first part of the article, we present Israel’s Dying Patient Act and its ensuing amendments and in the second part, we present examples of activities in the health services. In the third part of the article, we discuss the argument that it is only thanks to the combination of top-down and bottom-up action that a breakthrough has been achieved. Public health, Advance care planning, Legislation Public health is the science of protecting and improving the health of families and communities through promotion of healthy lifestyles, research for disease and injury prevention, and detection and control of infectious diseases (CDC website). With the aging of the population and the increasing burden of chronic illnesses, end-of-life care has also become a public health concern (Cohen and Deliens, 2012). It is a public health challenge to ensure that people can access good palliative or end-of-life care. Pursuing good population health essentially also implies striving for a “good enough death” and quality of care at the end of life. Safeguarding quality of the end-of-life for patient populations for whom it is appropriate requires a public-health approach. Although public health has traditionally been concerned with primary, secondary and tertiary prevention (Gordon, 1983), more attention needs to be focused on patient-centered care at the end of life. Improved access to quality end-of-life care can be achieved by advance care planning (ACP) (Cohen and Deliens, 2012). ACP—including completing advance directives (ADs), holding discussions or naming a durable power of attorney—and traditional public health share similar goals. They both promote behavioral change and emphasize patient-centered care, individual choice, and reducing health care costs (Cohen et al. 2008). However, while public-health policymakers and stakeholders emphasize the importance of prevention and health promotion by introducing effective behavioral change in such areas as smoking, exercise and nutrition, ACP has received considerably less attention (Maciosek et al. 2006). Moreover, Western countries invest significant resources in developing, introducing, and assessing preventive-care programs (Kushi et al. 2006) while few resources have been devoted to developing and evaluating programs that promote ACP. Programs for ACP implementation present many challenges. Physicians have limited time and often feel that they lack effective communication skills (Gott et al. 2009). There is variability in the conceptualization of ACP, including confusion regarding terminology (Shaw et al. 2017), and difference among ethnic and racial groups (Kwak & Haley, 2005) as well as among religious groups regarding Beliefs and values about control over life length and end-of-life values (Garrido, Idler, Leventhal, & Carr, 2012). In addition, patients rely on physicians to bring up the topic and underestimate the importance of ACP in clinical decision-making (Lund et al. 2015). Therefore, strategies to implement ACP need to be multifaceted and creative. The U.S. experience is illustrative. Policymakers, health care providers, and the public were enthusiastic about the potential of the 1991 Patient Self-Determination Act (PSDA), to promote ACP. However, the SUPPORT project (1995), to improve decision-making and outcomes in seriously ill adults, as well as later studies, did not show significant improvement in ACP implementation (Baker et al., 2003; Covinsky et al., 2000; Teno et al., 1997; The SUPPORT Principal Investigators, 1995). Studies also concluded that most efforts to promote ACP were not associated with promoting effective health care planning for the end of life (Wilkinson et al. 2007), health care providers usually do not know about the directive and even if they know, it not always affect patients’ care (Hardin and Yusufaly, 2004). Gaps in communication and documentation of ACP are common, and as a consequence, there is a disconnection between patients’ and family members’ wishes for less aggressive medical management at the EOL and documentation in the patient’s record (Heyland et al. 2013). In 2008, the Department of Health and Human Services concluded that the use of ACP in the United States had largely failed (Wenger et al., 2009). The effects of different types of ACP planning have been studied in the past decade in various settings and populations using different outcome measures. Nevertheless, evidence of the benefits of ACP is mixed (Mullick et al. 2013). Brinkman-Stoppelenburg et al. (2014) found that ACP positively impacts the quality of end-of-life care. Other studies have also found that the implementation of a program to increase the use of ADs reduces health care-service utilization without affecting satisfaction or mortality (Heyland et al. 2013, You et al. 2015. Researchers and stakeholders indicate two main strategic tracks in the process of influencing and changing health behavior. In the so-called top-down track, change is stimulated by policy initiatives, i.e., through legislation and regulation, consensus conferences, white papers, and directives from directors of health agencies and health plans (HMOs). Work plans, goal-oriented activity, and projects are then based on these top-down decisions. Budgets may or may not be allocated for these new initiatives. The second strategy, the so-called bottom-up track, promotes change through initiatives of professionals in the field, many of whom feel passionately about the subject (Rothman, 2004; WansteenListe et al., 2012). Working alone or with colleagues, they are the driving force behind interventions that they themselves plan and implement. Many of these initiatives are local or regional grassroots plans that grow out of professional insights, clinical experience, and knowledge accumulated over the years. Compared with government regulations and legislation that are usually imposed from above, the bottom-up approach makes it possible to adapt an intervention model to the population for whom it is intended (Fraser et al. 2006). Bottom-up programs can be more flexible, learning from other similar programs and adjusting their models as they go along. Usually they are not bound by strict standardized forms and instruments. As such, professionals can formulate a project in supportive, less threatening, and easily understandable language and make cultural and linguistic adjustments (Falicov, 2009). In this article, we demonstrate the added benefit of implementing ACP using top-down and bottom-up strategies together. We use Israel as an example to argue that breakthroughs in ACP implementation are more likely to occur where there are concurrent top-down and bottom-up strategies. In the first section of the article, we present the top-down legislative attempts to address ACP by describing the background to the Dying Patient Act (2005), and subsequent legislative amendments. In the second section, we present examples of bottom-up projects in the health care system in Israel. In the third section, we contend that it is the combination of the top-down and bottom-up strategies that may lead to a breakthrough and expansion of ACP in Israel. In addition, we argue that the Israeli case study is applicable to other health systems. Top-Down Legislation in Israel to Promote ACP The Dying Patient Act 2005 Background The right to make end-of-life decisions in Israel was recognized by the Dying Patient Act of 2005. The cultural milieu in Israel has impacted on the development and implementation of this policy. For many Jews and Muslims in Israel, the concept of “sanctity of life” is a core value (Glick, 1997). This contributes to a tendency among some people to request, and some physicians to provide, “aggressive” care even at the end of life. For example, Clarfield et al. (2006) found that the prevalence of use of feeding tubes in end-stage dementia was much higher in Israeli long-term care institutions than in Canadian ones. By contrast, many other citizens fear aggressive medical care in the terminal stages of their lives and prefer an emphasis on pain relief and supportive care (Bentur et al. 2012). Many physicians are also interested in improving the quality of end-of-life care by providing a palliative care approach (Aminoff, 2007). The enactment of the law reflected a need among health care professionals and the Israeli public, while trying to accommodate the many voices in Israeli society. Implementing Legislation Responding to prolonged public pressure, Israel’s Minister of Health appointed a public committee in 2000 to make policy recommendations on the sensitive issue of end-of-life care. The committee included representatives of different Jewish denominations, the large minority groups in Israel, physician specialists, philosophers, and ethicists. Based on the recommendations of this committee, the Dying Patient Act was enacted in December 2005 (Steinberg & Sprung, 2006). One year later, the Director General of the Ministry of Health issued a directive outlining the regulations, guidelines, and procedures for implementing the law. The objectives of the legislation were to, “regulate the medical treatment of the terminally ill patient based on an appropriate balance between the value of the sanctity of life, the value of the individual’s autonomous will, and the importance of quality of life. The law is based on the values of the State of Israel as a Jewish and democratic state and on fundamental principles in the realm of morality, ethics, and religion.” (The Dying Patient Law, 2005). A key principle of the law is that an individual has full autonomy to decide on treatment as long as s/he is competent, lucid, fully conscious, and able to give instructions about the medical care s/he wants to receive or not to receive. ACP reflects the wishes of competent individuals for care and takes effect only if their condition renders them incapable of making these decisions and they are defined as a “dying patient.” The law defines a dying patient as an individual with an incurable illness and a life expectancy of less than 6 months, regardless of medical treatment. In addition, the law requires medical staff to provide palliative care to dying patients and their families. The law aims to prevent suffering, while still prohibiting euthanasia and assisted suicide. (Steinberg & Sprung, 2007). The law specifies two methods of ACP to be implemented in the event of future decisional incapacity. An individual may fill out a formal, legally endorsed ACP document, an AD that stipulates instructions for care, or s/he may appoint a durable power of attorney. The AD includes a long list of potential restrictions on medical treatments such as resuscitation, intubation, dialysis, antibiotics for sepsis, major operations, etc. The document can be downloaded from the internet or obtained from the health funds. Completed forms are deposited in a central database at the Ministry of Health where they are reviewed, approved and registered, and must be renewed every 5 years. In the first decade after the Dying Patient Act was enacted, the Ministry of Health and health services did little to implement the law. Studies have shown that physicians in the community were largely unfamiliar with the law or attributed little importance to it. In addition, some physicians and members of the public misunderstood the law, and a few actually believed that the law permitted euthanasia (Bentur, 2008). A national survey of family physicians found that only 24% discussed end-of-life treatment preferences with their patients despite the fact that 67% felt that it was important to discuss ACP with patients. Moreover, although 90% of physicians believed that patients should have the right to decide whether to receive life-prolonging treatment, 34% of the physicians stated that they would make an effort to save the patient’s life under any circumstances (Bentur et al. 2016). In a national survey of a random sample of the general public aged 50 and older, it was found that only 4% of 720 respondents had written an AD, and only 5% had appointed a durable power of attorney (Bentur et al. 2016). Another study found that many people who wanted to prepare ADs found the forms long, complicated, and difficult to use (Shalev, 2009). In 2013, 8 years after the law was enacted, only 0.002% of the total population and 0.3% of older adults had signed ADs and submitted them to the database at the Ministry of Health (Shvartzman et al., 2015). About 90% of those who had prepared ADs were aged 65 or older, and 95% were healthy. In 51% of the cases, the AD was signed in the presence of a physician and in 49%, in the presence of a nurse. In most cases, the physicians were family physicians or internists, only 2% were oncologists. Only 10% of the ADs were signed in hospitals. Legislative Amendment, 2015 In view of the evidence that the law had made little change, and that neither medical staff nor members of the public were familiar with it, and given the difficulty in completing the complex forms appended to the law, the Ministry of Health amended the legislation in 2015. The amendment included a new simpler form known as “the combined power of attorney for medical treatment form”. This form allowed a person to appoint a power-of-attorney according to both the Patient’s Rights Act and the Dying Patient Law. Before the amendment to the form, two separate powers-of- attorney were required, one for each law. In the year after the amendment was issued, the number of power-of-attorney appointments that were registered at the Ministry of Health tripled. Bottom-Up Initiatives Organizational Activities to Change Patterns of Behavior regarding ADs The Dying Patient Act (2005) and a directive of the Ministry of Health (2009) required the health funds to provide palliative care in the community, a service that was sorely lacking. One of the first initiatives to address the shortage of palliative-care services was the opening of a private, for-profit home hospice company. This company provides home hospice care to more than half of the terminal patients of all the health funds throughout Israel. A standardized protocol has been introduced to discuss treatment preferences at the end of life as part of the care path. This protocol was initiated when it became apparent that many patients were being referred to home hospice without understanding the objectives of the service, and without a discussion of the goals of care. Over the past few years, the four health funds, as well as private and voluntary organizations have begun to initiate, develop, and implement programs to increase awareness of ACP. Clalit Health Services, the largest health fund in Israel providing medical care to 55% of the Israeli population, has introduced “Five Wishes” (https://www.agingwithdignity.org/five-wishes/about-five-wishes). Originally introduced in 1996 in the United States, it is an easy-to-use document written in everyday language that allows people to plan how they want to be cared for in case they become seriously ill and unable to speak for themselves. It is considered a short, effective tool that facilitates discussion with patients, not necessarily in the terminal state, during a routine visit to the family physician or nurse in the community. The approach is unique because it addresses medical, personal, emotional and spiritual needs, and helps structure discussions between patients, their families, and physicians. The Ministry of Health form, by contrast, was considered long, complicated and difficult to understand, and did not provide a framework for emotional support of patients or an in-depth look at their wishes. In the initial stage of implementation, the tool was translated, validated and adapted to the Israeli milieu, and then piloted among professionals and patients. Currently, it is being distributed to all primary-care providers (physicians and nurses) of the Clalit health system across the country. Another bottom-up initiative was introduced by the second largest health fund, Maccabi HealthCare. It developed a tool to help structure end-of-life discussions between primary-care providers and patients. The tool was designed to guide physicians through discussions of medical and legal end-of-life options. Rather than eliciting five specific wishes as in the form used by Clalit Healthcare Services, the Maccabi tool is more open-ended and included the combined power-of-attorney and medical-treatment forms issued by the Ministry of Health. The third example of a bottom-up initiative was implemented by the directors of two community clinics in Jerusalem. The program aimed to promote discussion between family physician and patients about ACP, to allow patients to talk openly about the subject, and to provide them with information about ACP. Family physicians participated in teaching sessions, and an introductory meeting for patients offered them two half-hour visits with their physician to discuss the topic. In addition to these health fund programs, various social services and NGOs, e.g. the Israel Cancer Society and the Alzheimer’s Association of Israel incorporate end-of-life decision-making and ACP in their programs. In recent years, the topic of ACP has been presented at academic conferences. Furthermore, Israeli researchers and clinicians are studying the challenges of promoting ACP and increasing public involvement in end-of-life decision-making. Discussion Access to quality end-of-life and palliative care has become a public-health priority. Although ACP is recognized as the means to ensure the quality of patient-centered care, implementation of ACP programs has proved challenging. In this article, we argue that legislation alone, a top-down initiative, does not lead to ACP implementation. Parallel bottom-up processes should be initiated within the medical system to encourage communication between staff, patients, and families around end-of-life decisions. Legislation of generally agreed-on policy might be the first important step, but more is required if the law is to be implemented and incorporated into clinical practice (Bond et al. 2009; Sullivan et al. 2005). It is important to note that many public health initiatives are preceded by research and bottom-up initiatives that then lead to the enactment of legislation. Legislation banning smoking in the public space was enacted only after years of research and public pressure through bottom-up initiatives (Frazer et al. 2016). After a decade of poor implementation of the Dying Patient Act in Israel (the top-down approach), ACP programs are now being shaped by the development of bottom-up initiatives. The convergence of both strategies creates a new field of activity and contributes far more than either strategy alone in addressing the challenges of this complex and change-resistant issue. It is the synergy between top-down and bottom-up activities that is leading the way and addressing the challenges of ACP implementation. In fact, the U.S. Department of Health and Human Services report to Congress, stating that initiatives to promote ACP had failed, also identified two initial bottom-up programs that had demonstrated success (Hammes, 2010). The first program, initially implemented in Oregon in the 1990s, suggested that an additional step might be needed to bridge the gap between patient goals and preferences and the implementation of the law (Covinsky et al. 2000, the SUPPORT Project. 2010). This “missing step” was implemented in the form of a standardized protocol called Physician Orders for Life Sustaining Treatment (POLST), an ACP tool for seriously ill patients with chronic conditions. The adoption of the POLST by many states in the United States validates the benefit from a combination of the top-down and bottom-up approaches. The second bottom-up approach advocated by the U.S. Health and Human Services report is called Respecting Choices. This program was implemented in the late 1990s as part of the La Crosse Advance Directive Study (LADS I) (Hammes and Rooney 1998). LADS invested in training staff members in ACP skills; it went outside hospitals to educate and engage the community in ACP; and it is subject to a process of continuous quality improvement. Two decades of implementation have shown a significant increase in the percentage of adults who have completed ADs and benefited from end-of-life consistent with AD instructions. Both the POLST and Respecting Choices programs emphasized involvement of the patient and family in ongoing discussions with their physician, and accessible documentation of these discussions in all treatment settings. A recent meta-analysis has shown that these bottom-up initiatives not only lead to increased AD completion, but also to encouraging discussions about end-of-life preferences and promoting care that reflects patient preferences. Studies have also shown that these bottom-up initiatives were stimulated by the passing of legislation and subsequent regulations (top-down initiatives), and they could not have happened in a vacuum (Houben et al. 2014). The completion of ADs as well as bottom-up communication programs are still in their infancy in Israel, not yet approaching the rates achieved in other Western countries. However, because Israel is a small country with a relatively uniform health system, it may serve as a case study to demonstrate that the top-down approach alone has not been successful in promoting ACP over the past decade. This case study may be applicable to other countries by reinforcing the importance of parallel development of top-down and bottom-up initiatives. The question of where to start is less important, than understanding that parallel and synergistic initiatives are imperative. In addition, the Israeli case study can serve as an example to other health systems of the central role of an informed and engaged primary care sector in promoting ACP. It is anticipated that the convergence of top-down strategies and bottom-up programs, now just beginning to take root, will lead the way to addressing the challenges of this complex, change-resistant issue. We currently lack empirical evidence that the combined top-down and bottom-up approaches have resulted in a significant change in ACP completion rates in Israel. Studies in this area are needed. In addition, research should be developed to assess the quality of communication around end-of-life discussions, the knowledge of ACP by patients and families, and end-of-life preferences. 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Published: Oct 13, 2017
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