Implementation of an End of Life Protocol in Outpatient Palliative Care and Geriatric Clinics
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Implementation of an End of Life Protocol in Outpatient Palliative Care and Geriatric Clinics
We only die once; why not make it on your terms? The notion of advance care planning (ACP) and directives has been within the realm of public awareness for over forty years (Meier, 2011). The idea for these plans is similar to the concept that motivates people to write and register legal wills. An advanced directive (AD) assures that their life information and property (body) are treated in the manner they specify for legal purposes. It might seem logical that most people would be interested in completing their AD, but this process is one that is many times seen as emotional and too difficult to confront (Meier, 2011). According to Rao (2014), the most common reason for not making use of AD is lack of awareness among nursing and healthcare staff.
AD and ACP are means for individuals to formally communicate their wishes for how medical and other supports should be addressed in case of dire emergency and end of life progression. Currently, there is reluctance among health care providers to discuss advanced directives with their patients (Booth, 2016). There are many barriers obstructing the completion of AD and ACP. The paucity of an effective role for health care providers, mainly nurses, affects the communications with patients and the personal decisions or the opportunities for the patient to make end of life decisions (Booth, 2016).
It is imperative that nurses take the lead in initiating this important conversation with patients to enable them to make decisions that affect the end of life care they will receive. This is considered advocacy of the patient, which is an inherent obligation of nurses. This doctor of nursing practice (DNP) project shall focus on the importance of nurses initiating the conversation of ACP and completing the required AD forms within outpatient palliative care and geriatric clinics.
In the 1970s, Karen Quinlan’s case brought end-of-life care issues such as living wills, competency versus incompetency, and the withdrawal of medical care to the attention of the public (Croke & Daguro, 2005). In 1990, the United States Congress introduced the Patient Self-Determination Act (PSDA), which was enacted in law in 1991 as a result of the Cruzan case (Croke & Daguro, 2005). This case was brought against the Missouri state courts as the first right to die case, that went all the way to the United States Supreme Court. The final decision did support the patient’s decision to refuse medical treatment.
When a patient declines or becomes unable to direct their health care, nurses and other medical personnel are constrained by laws and regulations from dispensing any medications and products or performing any procedures that the patient did not authorize. The PSDA obliges all health care facilities receiving Medicare or Medicaid funding to implement an AD/ACP program (Croke & Daguro, 2005). Healthcare providers who comply with the patient’s advanced directive in good faith will not be exposed to criminal or civil liability (Croke & Daguro, 2005). However, those providers who fail to comply with advanced directives may result in liability for charges of medical battery, malpractice, and negligence (Croke & Daguro, 2005).
The AD empowers the patients to make clear decisions regarding the treatment they receive or refuse as they approach the end of life (Brown & Vaughan, 2013). Advanced directives provide information to health care providers regarding the type of medical interventions the individual would like to have or not have if the individual becomes incapable of making health care decisions (Croke & Daguro, 2005). There are two forms of AD; a durable power of attorney for healthcare (DPAHC) and living wills. “The DPAHC allows an individual (patient) to appoint someone (agent, proxy, surrogate) to make healthcare decisions for them; it becomes effective when the patient becomes unconscious, loses the ability to make decisions, or is incapable of communicating his or her wishes” (Croke & Dugaro, 2005, p. 21). “The living will provides specific instructions to healthcare providers about the particular types of treatment or procedures the patient would want or would not want to prolong life” (Croke & Daguro, 2005, p. 21).
The Centers for Medicare and Medicaid Services (CMS) stated that they will allow healthcare providers to charge CMS a fee for voluntary ACP under the Medicare Physician Fee Schedule and Hospital Outpatient Prospective Payment System (Centers for Medicare and Medicaid Services [CMS], 2016). The federal government believes that completing advanced directives is so important it has offered healthcare providers receiving Medicare funding an incentive. Most health care providers will now capitalize because this incentive adds revenue for outpatient clinics. In order to optimize funding, outpatient clinics should implement AD and ACP programs for their patients.
Despite the difficulty in providers have in discussing potential end-of-life care with patients, it can be very reassuring to know that there are a formal means by which to state their wishes and to designate a proxy to be their representative at a time when they cannot make healthcare decisions. By implementing and developing a protocol/policy for completing advance directives upon initial assessment in outpatient clinics, it is likely that more patients would complete and understand their advance directives. Implementation of a formal advanced directive training program targeted towards nursing and healthcare staff could improve patient care, increase the rate of seniors completing advanced directives, and empower the nursing staff to initiate this vital conversation.
Even though there is increasing support for the provision of advance directives among medical personnel and the public, there remain questions and hesitancy about how the subject should be raised, and who should initiate the discussions. A group of family/emergency physicians and researchers undertook a significant study that was published in early 2015. The research team found that although close to half of the participants had discussed the topic of advance directives; fewer than twenty percent had completed written documents (O’Sullivan, Mailo, Angeles, & Agarwal, 2015). While the majority of those surveyed felt that advance directives/advance care planning was the prerogative of the patient, patients who considered advance directives extremely important were significantly more likely to want their family doctors to start the conversation (O’Sullivan, Mailo, Angeles, & Agarwal, 2015).
There are a number of barriers to ACP, and these exist both on the part of patients and the interdisciplinary health care team. Many people feel that if they do anything to
formally acknowledge that they will die, it will make it happen more quickly (Rao, 2014). Other obstacles to AD use include simple lack of awareness among healthcare professionals (Rao, 2014). Thus, the issue addressed herein is the low amount of AD used in the outpatient clinic setting. This result from healthcare professionals commonly lacking a clear understanding of the importance AD have in preparing patients and their families (Rao, 2014).
Bowers (2016) conducted a survey among medical personnel regarding their engagement in end of life care planning. The vast majority was highly in favor of ACP discussions however, less than one-quarter of those surveyed had undertaken this activity. The most comprehensive study regarding this topic was a systematic review of studies conducted at Perelman School of Medicine at the University of Pennsylvania. This study suggested that “63% of American adults have not completed any AD” (Perelman School of Medicine at the University of Pennsylvania, 2017, para. 1).
This project aims to initiate an official protocol for outpatient palliative, and geriatric clinics that seeks to improve completion of advanced directives; implements a formal training program in life care planning for all interdisciplinary team members, and improve medical professionals’ access to completed AD documents. Furthermore, this project’s purpose is to retain a leadership focus by increasing advanced directives completion rates and improving revenue from CMS prospective payment system.
The objectives of this DNP project are:
- To develop a policy to improve the provision of end of life care planning in the outpatient palliative care and geriatric clinic
- To educate staff in the protocol for advanced directives to improve their knowledge, skills and attitudes (KSAs) in providing this care.
- To implement a process to record’ advance directives into patient’s medical health record
- Increase advance directives completion rate for all Palliative and Geriatric patients by 50%, which will be measured through chart audits.
This project utilizes the acronym “PICO,” Population or Problem (P), Intervention or Issue of Interest (I), Comparison group or Current Practice (C), and Outcome (O) and is typically presented as a question (Melnyk & Fineout-Overholt, 2011, p. 31). The question this project will address is: Will the implementation of a policy/protocol and end of life care planning training for the interdisciplinary team in outpatient palliative care and geriatric clinics improve the amount of completed advanced directives and end of life care planning for patients being treated in these clinics?
P: Problem: Advanced directives and end of life care planing is provided by staff only 50% of the time in an outpatient palliative care and geriatric clinic.
I: Intervention: Developing a policy/protocol to improve completion of advanced directives and
initiate end of life care planning.
T: Timeframe-within 3 months.
Coverage and Justification
A search of the Touro University Nevada (TUN) library databases using the ProQuest, CINAHL, and MedLine databases was conducted. In addition, the American Association of Critical Care Nurses and the NIH (National Institutes of Health) databases were also viewed. The search was limited to publications between 12/1/2012 and 11/1/2017 to ensure current literature was reviewed. Keywords for the search included end of life issues, hospice care, geriatrics, nursing, advanced directives, advanced directives and nursing, nursing perceptions of advanced directives, legal issues, palliative care and patient’s rights. Other search components included English language, peer reviewed, Boolean phrasing. Articles reviewed for this projected were limited to Palliative care and Geriatric population. Articles were chosen based on the inclusion of patients 65 years of age or older, palliative care or geriatric patients, advance care planning, advance directives, legal and ethical issues healthcare training, and implementation. Exclusion articles for ages under 65, hospice patients, literature greater than five years old and inpatient setting. Thirty to forty articles were retrieved from this search, only the most recent and specific literature was kept from exclusion.
Several themes did arise from the review of the literature. The most significant was the need for hospitals and facilities to create and enforce policies about advance directives, and then provide training to personnel. ACP helps to ensure that patients receive care that is consistent with their preferences. In addition, it aims to provide guidance to the family and reduce their decisional burden about whether they are following these preferences (Mullick, Martin, & Sallnow, 2013). ACP can lay the groundwork for surrogates by providing a framework that they may utilize for informed decision-
making, keeping in mind the patient’s goals, values, and beliefs, as well as their treatment preferences.
In January of 2016, the (CMS) began implementing a reimbursement fee for guided discussions with patients about advance care planning. Medicare’s new payment for ACP is likely to help more people discuss end-of-life issues with their healthcare team. As of 2016 Medicare part B covers voluntary ACP as part of the yearly wellness visit (CMS 2016). Bowers (2016) conducted a survey among medical personnel regarding their engagement in end of life care planning, the vast majority was highly in favor of advance care planning discussions however, less than one-quarter of those surveyed had undertaken this activity. While increasing reimbursement will help facilitate more such discussions, improving automatic triggers for palliative care and geriatric referral is another important method that can be helpful in advance care planning.
Caring for patients at the end of life is a challenging task that requires not only the consideration of the patient as a whole but also an understanding of the family, social, legal, economic, and institutional circumstances that surround patient care. Acting in a manner that does not comply with the law can have serious consequences for both the patient and physician. Negative consequences for patients include receiving unwanted treatment or not receiving treatment that is wanted. Both scenarios could potentially result in civil and criminal sanctions for physicians, nurses, and healthcare team (Willmott, 2016). Importantly, the mere absence of explicit legal authorization for an action does not mean that action is prohibited (Wilmott, 2016). Medicine remains a largely self-regulated profession. There is comparatively more law regarding end of life care. But, the law does not and cannot directly address all interventions and procedures. Understanding the legal aspects of end of life care should give the practicing clinician the confidence and freedom to act ethically and responsibly. Some of the legal standards regarding end of life care in theUnited States vary by state, but there are specific legal precedents surrounding end of life care that generalize (Alan, 2013).
Policy Development and Training
In Rao, (2014), he discusses a variety of problems seen by medical professionals, including the lack of advance directives. Additionally, few institutions exist with formal training in how to approach the issue with patients, and there is a lack of knowledge about how to assess a patient’s end-of-life needs and preferences. According to Bowers (2016) medical personnel who had received training in advance care planning felt more comfortable and confident about having discussions with their patients. The latter finding is the impetus for this proposal: the belief that patients need advance directives, and that nurses and others – with training and experience, can facilitate these discussions and accomplishments.
In 2014, Rabinowitz focused on the perspectives of practitioners in advance care planning. While the medical group involved was made up of general practitioners (GPs) who had worked with patients whose conditions and diseases included dementia, heart failure, and cancer, some helpful findings might be representative of other GPs. The general findings identified a lack of knowledge about treatment options, lack of communication between GP and specialists, as well as lack of GP experience with the terminal stages of diseases (De Vleminck et al., 2014). Additional problems were the patients’ lack of understanding of their diagnosis and the likely progression of the diseases. It was noted that the GPs saw the little initiation of advance directives or advance care planning by patients. The authors make similar recommendations as those made by other researchers: that guidelines and training be established for physicians in the area of advance care planning.
Obrado, (2016) notes that there should be formal policies for both AD and ACP, and that providers and medical personnel should have training and opportunities to continue study with online and other materials. He notes the importance of including patients and their families in discussions that will result in shared decisions and better outcomes.
Even though there is increasing support for the provision of advance directives among medical personnel and the public, there remain questions and hesitancy about how the subject should be raised, and who should initiate the discussions (Orado, 2016).
Perceptions of Advanced Care Planning by the Healthcare Team
A group of family/emergency physicians and researchers undertook a significant study that was published in early 2015. The research team found that although close to half of the participants had discussed the topic of advance directives, fewer than twenty percent had completed written documents (O’Sullivan, Mailo, Angeles, & Agarwal, 2015). While the majority of those surveyed felt that advance directives/advance care planning was the prerogative of the patient, patients who considered advance directives extremely important were significantly more likely to want their family doctors to start the conversation (O’Sullivan, Mailo, Angeles, & Agarwal, 2015). As helpful as this information is, it does cause some confusion as to the role of physicians in that their place in deciding such cases could be viewed as legally binding or not.
Several reasons are documented in the literature by patients for not having advance directives. For instance, patients believe that the advanced directive is too binding, they did not want anyone but their family deciding their ultimate fate. Patients say they had never heard of advance directives or had been putting it off. They also felt uncomfortable making the decision, believed they are not necessary, and thought that the forms were too long. It may be that the greatest barrier to completion is a lack of communication between patients and their healthcare team (Beck, 2013).
Barriers to Completing AD/ACP
There are several barriers as to why AD and ACP are not completed in clinical practice. These challenges include the lack of a widely adopted nursing protocol, making end-of-life and advanced care planning interventions unduly subject to organizational constraints under which nurses operate (Lund, Richardson, and May, 2015). This underscores the need for a standard nursing protocol that can be adopted by multiple organizations – one in which the nurse is empowered to act as a patient advocate, and proactively guide patients through end-of-life care decisions and advanced care planning (a la Benner’s model). A third challenge is the uncertainty of patient prognoses and the inherent difficulty in determining when to initiate advanced care planning discussions (Lund, Richardson, and May, 2015). Again, this underscores the necessity of a standard nursing protocol, one in which patient autonomy is valued, and nurses are encouraged to engage patients on critical end-of-life care decisions. Lund, Richardson, and May (2015) further cites reported difficulties by practitioners as including the unpredictability of the effectiveness of advanced care planning based on the emotional volatility of the patient, family members, and caregivers. As Hebert, Moore, and Roonet (2011) asserts, Benner’s model appropriately takes the Kubler-Ross model of the stages of grief (2011). Shickedanz et al.(2015) note multiple barriers that may be associated with demographic concerns, such as language barriers, and educational attainment levels.
The current recommendations for the outpatient palliative care and geriatric clinics is to initiate a formal policy to provide advanced directives and end of life care planning with the
patients and the patients’ families they serve. Implementation of this policy is supported by the literature mentioned above as well as maintaining compliance with CMS regulatory standards for outpatient medical clinics. The staff will be educated to the protocol and receive specialized training in how to initiate this conversation. This policy will support the clinic staff in this change in practice to focus on providing end of life care planning. The clinic administration will have to support the implementation of this policy to include specialized staff training, which will be a cost to the administration. Permission to perform patient chart audits will have to be obtained in order to evaluate the success or failure of this practice change.
The Role of the Healthcare Team in End of Life Care Planning
Karnek & Kanekar (2016) addresses the roles and responsibilities of physicians to include access to advanced directives, communication of treatment options, and providing the most likely prognosis specific for the patient’s condition. The authors note that while there should be discussions between the patient and family about the treatment that will also be shared with the healthcare team, but this duty is not to be confused with the unnecessary use of resources and inflicting more harm (Karnek & Kanekar, 2016). What this seems to indicate is that there are other factors beyond what family members want in regards to the patient’s welfare. This review by Karnik, S., Kanekar, A., & Parthasary, S. (2016) echoes the recommendations of multiple other articles and reports, in noting that healthcare executives and administrators must create and implement policies about end-of-life treatment, and strongly emphasizes that advance directives education might be included as admission procedures for appropriate patients. This recommendation, if adopted by healthcare organizations and hospitals,
would open the gates to discussion and completion of advance directives, for the benefits of medical personnel, the patients and families.
Needs Further Investigation
While the research demonstrates, there is a varied list of barriers to discussing and completing advance directives; both for patients and for medical professionals. However, further research needs to be conducted regarding how patients prepare themselves and their families for end-of-life. While the research details patient and family confusion, denial, reluctance, and a lack of understanding or information, and the preparation as barriers to completing AD and ACP, the healthcare facilities must have policies in place for completing and storing these documents.
Review of Study Methods
Several research methods were used in the literature reviewed for this project. Rao (2014), performed a systemic review of literature which provided the following themes. Healthcare teams could benefit from a formal education along with policies and procedures directed towards advance care planning. Qualitative methods were used to gain data on current practice and understanding decision making by patients and families (O’Sullivan, Mailo, Angeles, & Agarwal, 2015). It is necessary to understand current practice before one can move forward with changes to improve upon it. Bowers (2016), used observational study methods to studies to how comfortable nurses fell when having conversations with patients about their life care planning. According to Bower (2016), medical personnel felt comfortable having the end of life care planning after formal training was provided.
Significance to the Profession
There can be no question that the population of the US is aging. Baby boomers, the largest group of citizens in the US, are continuing to advance in age. Increasingly, they will need to make decisions regarding end of life care, if not for themselves, then for their family members or friends. In addition, both patients and the healthcare team would benefit in regards to more information regarding end of life disease management, treatment options for care, and ACP. Administrators and directors of nursing would also benefit from additional research into how patients make end of life care decisions, so that they can direct their resources and employee training in the areas where they are most needed and most beneficial to patients.
Theory Identification & Discussion of Historical Development of the Theory
Benner’s (2005) conceptual model of nursing advocacy provides the most comprehensive practical model for the instantiation of an end-of-life protocol in outpatient palliative care and geriatric clinics. As Hebert, Moor, and Rooney (2011) assert, Benner’s model unlike previous nursing advocacy frameworks, accounts for the Kübler-Ross (2011) model of grief stages (denial, anger bargaining, depression, and acceptance), as well as the necessity of cultural competency in end-of-life healthcare and patient discussions. It also addresses disparities in nurse training and education concerning end-of-life directives, and both real and perceived barriers concerning healthcare provider policies and protocols involving the role of the nurse in end-of-life patient planning (Hebert, Moore and Rooney, 2011). Further, Hebert, Moore, and Rooney (2011) assert that this model can be performed by nurses at all stages of their career development (2011).
Benner (2005) conceptual framework was drawn from a combination of her exploration of nursing theory and her applied clinical practice as a staff nurse in the seventies, eighties, and nineties. Her theory stems from her involvement with a research project designed to validate the Dreyfus model of skill acquisition utility among clinical nurses. The Dreyfus model involves five stages of increasing skill as individuals develop increasing theoretical and practical knowledge. Using a series of qualitative studies, Benner derived a widely used framework for skill acquisition among nurses (Benner, 2005). The research project further allowed her to develop a framework for understanding the role of the nurse as an advocate, which should be referenced to inform the design of the proposed protocol (Lewallen, n.d.). A subsequent study by Thacker (2008), evaluating nursing care involving end-of-life , affirmed the utility of Benner’s framework in end-of-life nursing advocacy.
Applicability of Theory to Current Practice
There are considerable challenges to implementing advanced care planning and end-of life-care interventions, including the expectations among healthcare practitioners that advanced care planning should be driven by patients, rather than by practitioners (Lund et al., 2015). Application of Benner’s framework holds that nurses should directly engage patients in end-of-life planning processes (Thacker, 2008). Shickedanz et al. (2015) emphasize the necessity of nurses to provide culturally competent care in end-of-life decision making. Benner’s model, specifically its role of teaching and coaching dimensions, call upon nurses to help patients surmount these barriers. Hebert, Moore, and Rooney (2011) also notes that Benner’s model recognizes and inherently incorporates the provision of culturally competent care. Coffey et al. (2016) study showed evidence that a deficit of confidence among nurses to appropriately address end-of-life discussions with patients is widespread. Their five-country cross-sectional study showed nurse confidence levels dealing with advanced directives and end-of-life care in was less among younger nurses than older nurses, regardless of country. Benner’s framework provides a series of practices that can be initiated by nurses at all levels of career development (Hebert, Moore, and Rooney, 2011).
Major Tenets of the TheoryNovice
Benner’s Novice to Expert model is comprised of seven domains of nursing caring behavior, the helping role, the teaching or coaching function, diagnostic client monitoring functions, effective management of rapidly changing situations, administering and monitoring therapeutic interventions and regimens, monitoring and ensuring quality of health care practice, and organizational work-role competencies (Hebert, Moore, and Rooney, 2011). All of which should be accounted for in the design of interventions performed by nurses involving end-of-life care. Additionally, in Benner’s model, the practitioner’s role is to not only listen to and account for patient needs and desires, but actively guide them through the decision-making processes undergirding their care (Hebert, Moore, and Rooney 2011; Thacker, 2008). This framework formalizes the role of the nurse as advocate and further, encourages the diffusion of nursing advocacy in each dimension of nursing practice.
Moreover, Benner’s model not only inherently emphasizes the role of the patient as active agent in all areas of patient care, but also as compassionate and ethical actor in end-of-life care decisions. Her work draws significantly on the social justice and patient autonomy components of bioethics, as well as her Christian faith (Lewallen, n.d.).
Application of Theory to DNP
Benner’s theory has wide application to DNP clinical practice. As nurse leader, the DNP may be called on to provide training, guidance, or mentorship to registered nurses and / or nurse practitioners in practice, as well as design nursing initiatives used by nurse teams in clinical settings. The Benner model provides the DNP with a widely used and validated conceptual framework that can be used not just to provide training, or design interventions, concerning end-of-life patient care. Also more broadly to both instruct others concerning the role of the nurse as patient advocate, and to design interventions that allow nurses and nurse teams to effectively serve as advocates in their respective clinical settings. Moreover, Benner’s framework, formalizes the role of the nurse as active advocate within a bioethical framework. This allows the DNP to provide other nurses with ethical guidance about the role of the nurse as a patient advocate, within the four commonly recognized elements of bioethics: social justice, patient autonomy, beneficence and non-maleficence. Benner’s framework also provides a theoretical framework with which they may approach complex ethical questions in clinical settings, or theoretical research questions they may explore in academic settings.
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