PasteIntroduction
In September 2014, the National Academy of Medicine (NAM) formally known as The Institute of Medicine, presented its report, Dying in America providing five recommendations concerning end-of-life (EOL) care issues in the United States. NAM’s ultimate goal involved improving the individual and highly personal experience of dying in America. The intended focus was to address individuals and their families “To this end, care near the end of life should be person-centered, family-oriented, and evidence-based” (NAD, 2014, S-5). Deliberate decision making eliminates stress, depression, confusion, and guilt (Houben, 2014). Providing psychological well-being once advance care planning (ACP) is in place for all parties concerned
Advance care planning is a process that allows an individual to plan for their end-of-life (EOL) care while they are still capable of making choices for themselves (Sinuff et al., 2014). End-of-Life care complements individuals with progressive chronic, possibly incurable illnesses, or traumatic injury while supporting the individual live in the best possible way until death. Management of symptoms such as pain, emotional, and spiritual support are often provided. Advance care planning reflects EOL care contemplation as determined by an individual’s beliefs, desires, and preferred care treatment (Sinuff et al., 2014). This planning is often misunderstood as making medical decisions; although medical decisions may come into play when wishes and preferred treatment is clinically indicated. For example, an important choice includes involving a substitute person to speak for the person unable to voice their specific instructions regarding treatments they may or may not want.
The ultimate aim in ACP is to carry out a person’s expressed wishes and preferences as communicated to loved ones or significant others. These matters are best discussed in a no-pressure situation outside of the clinical setting before debilitating illness or hospitalization occurs (Sinuff et al., 2014). Well defined instructions can provide and encourage easily communicated direction/instructions for healthcare community members in the event of progressive illness with a projected decline (Mullnick, Martin, & Libby, 2013, Rhee, Zwar, & Kemp, 2012). To date, there is no validated list of core components that can measure whether patients are receiving quality care given during EOL care (NAM, 2014).
Background
Healthcare has made significant improvements in caring for patients with high acuity, life threatening injury, conditions and illness. In an effort to establish patient medical rights The Patient Self-Determination Act (PSDA) was enacted in 1990 (Brown, 2003). This act encouraged healthcare establishments and organizations billing for Medicaid or Medicare services to provide information regarding patient rights and medical treatment. Institutions are required to inform patients about their right to participate in their medical decisions, refuse medical treatment (including surgical), have an advance directive, institution policy influencing these rights, and never to discriminate against persons who refuse to pen an advance directive (AD).
The following components assist in relaying information to the healthcare system and may include any of the following: AD, Living Will, a do-not-resuscitate order (DNR), substitute decision maker by proxy, a Power of Attorney for Health Care (DPAHC), a financial plan, and other necessary plans for the individual’s EOL care (American Academy of Hospice and Palliative Medicine, 2003). ACP can encompass all of the above, always dependent on the individual needs, and may be amended or updated at any time.
*Once the PSDA was enacted, nurses believed this was a call to action for increasing a patient’s awareness regarding EOL care issues, especially the older adult (Brown, 2003). Brown’s liturature review included future recommendations for health care professionals. The recommendations included, moving from a less threatening setting- such as a hospital, moving beyond legal dictates- by including personal choices as relevant to a person’s sensitivities and needs, and the information needed to be accurate. Basically, for nurses, the PSDA formalized conversations nurses had with their patients regarding advance directives.
In a 2004-2007’s literature review lead by Wilkinson, Wenger and Shugarman (2007) the terms AD and ACP were being used interchangeably. Advance care planning as compared to AD is a complete EOL care of concerns establishing and compiling an individual’s expressed wishes and preferences openly before death. An advance directive is a document with dual purpose. One purpose is to convey whether a patient chooses to have cardiovascular pulmonary resuscitation (CPR) and the other purpose gives authority to person/persons of choice regarding decision-making over continued medical treatment. For example, an acute care setting that required more aggressive medical treatment also meant a patient was less likely to have the ability to state their wishes and preferences concerning their EOL care. In many situations, practitioners were not aware patients had ADs. When practitioners did become aware of the patients’ wishes, it was found that the medical treatment provided was often far more aggressive than patients would have wanted. According to the Wilkinson et al. (2007) there was a disconnect between a patient’s wishes, preferences, and their EOL care.
The most prevalent forms of ADs include the Durable Power of Attorney for Health Care (DPAHC) and the Living Will. Durable Power of Attorney for Health Care documentation authorizes another person to make medical decisions for the individual in case there is a loss in the ability to do so. Living Will documentation provides instructions to the medical community regarding the individual’s preferences and future medical treatment. Recently, the Patient Protection and Affordable Care Act included ACP in its medical systems reforms, in doing so Medicaid/Medicare has implemented a billable service for time expended in discussions and initiation of ACP (Department of Health and Human Services Centers for Medicare & Medicaid, 2016).
Due to the growing frustrations and the prospective limitations considering the multitudes of instruments and tools, many states have begun advocating for the Physician Orders for Life-Sustaining Treatment (POLST) or Medical Order for Life-Sustaining Treatment (MOLST) as the next step in the evolution of ACP (Rogne & McCune, 2014). These orders are intended to be used with individuals that have irreversible illness. Medical orders of Life-Sustaining Treatment is clear, understandable, and a portable method for patients who want to make sure, that during an emergency their medical treatment is carried out as medical orders (See Appendix A for an example of a MOLST as used in New Mexico).
This project will target the most vulnerable population at greatest risk for dying. Individuals 65 years and older are the fastest growing segments of the U.S. population (West, Cole, Goodkind & He, 2014). In the U. S. older adults over the age of 85 are predicted to grow in population from the current 5.9 million to 8.9 by the year 2030 (Outman, Velkoff, & Hogan, 2014). Adults born between the years 1946-1967 have been labeled baby boomers. Baby boomers are also expected to increase, reaching 18% of the total U.S. population by the year 2030 (Colby & Ortma, 2014). This means, that, approximately 10,000 people will turn 65 every day for the next 15 years (NAM, 2014). Promoting older adults in the contemplation/initiation/completion of ACP before hospitalizations is vital given the U. S. prognosticating statistics and will be crucial for this segment of population.
In 2014 of persons over the age of 65 living in local communities of Southern New Mexico consist of 13.2 % (AARP, 2014). Southern New Mexico’s projected older population was predicted to be 13.5% by the year 2030; however it is already 13.2% in 2014. The projected trend of New Mexico’s population of persons age 65 and older will more than double. The fastest rate of population growth in New Mexico is for those ages 85 or older. These statistics mirror a national trend (West, Cole, Goodkind & He, 2014).
In a 2016 survey conducted by the John A. Hartford Foundation of 736 physicians who regularly treated patients 65 and older were asked about their experiences billing for ACP conversations. While the physicians saw the added advantage of being able to bill for services geared toward EOL discussions, only a small portion (14%) had done so. Their main barrier related to not having a “formal assessment process in place- and attitudinal, such as sometimes feeling uncertain about what to say in these conversations with patients” (John A. Hartford Foundation, 2016, p3). Initiating the discussion was complicated as they did not have specialty training or time. Physicians in private practice were also less likely to have a system in place where ACP could be instantly reviewed. Ninety-nine percent of the physicians reported it was important to have EOL conversations with patients.
A Pew Research Center (2013) survey regarding EOL decisions indicated: 66% of respondents felt that individuals should be allowed to die without medical interventions if death is imminent. Additionally 33% of the respondents stated that everything possible should be done to save a person’s life no matter the circumstances. Fifty-seven percent said they would tell their providers to stop all treatment. In addition, a total of 78% of the respondents agreed and 16% do not agree that a family member should be able to make decisions when and if they could not do so. This survey demonstrates the importance of knowing what individuals want based on their beliefs and preferences. The relevance of others committing to a person’s EOL care is a humane right we all share. Though many articles may include barriers, this author has chosen to focus on the expectation of facilitating discussions.
Project Purpose and Objective
The purpose of this project is to evaluate a simplification structured plain language survey/checklist, as perceived by people over the age of 65, to follow as a guide for the initiation of their ACP. This survey/checklist can provoke conversation and understanding of the decision making process. As each question designates an essential element appropriately in line with EOL care, in the event an individual is unable to speak for themselves. Including ACP as a part of routine care is necessary in any medical practice providing for older adults. Making it a part of the routine annual visit or added to a problem list, may be considered just like asking for health maintenance information or eliciting vaccines history (Fultron & Teno, 2014).
This scholarly project will be geared toward the translation of the evidence into practice as directed by American Association of Colleges of Nursing Doctorate of Nursing Practice (DNP) essentials (2006). An expectation for this DNP assessment-focused project is to contribute to interprofessional collaborative care.
Review of literature
A literature review using studies published between the years 2010-2015 was completed. Databases included CINAHL, Cochrane Library, PubMed, EMABASE, GOOGLE scholar, New Mexico State University Nursing & Allied Health Collection and PsycARTICLES. A combination of organized vocabulary and free text words was used in the search: advance care planning, communication, advance directives, living wills, primary care, general practitioners, family physicians, EOL, EOL decisions, EOL interventions, patient wishes, initiation of ACP, facilitation of ACP. A total of 287 articles contributed in the search, 141 potential articles were read using Melnyk & Fineout–Overholt Evidence-Based Practice in Nursing & Healthcare: A Guide to Best Practice (2010) for the critical appraisal of the articles.
Advance care planning is a new concept for many consumers and healthcare team members. Introducing this relatively new concept through community awareness via healthcare, intercollabrative patient centered care will allow for open discussions. Dissemination of the NAM (2014) reported findings and recommendations will eventually trickle down to small rural communities. The expectation is that within these communities everyone will be proactive concerning EOL care issues. In order to do so, it will be essential to engage our healthcare communities in the implementation of ACP.
Communication
Communication has been identified as a crucial element in discussing EOL care issues with patients and their families through simple conversation, communication and engagement that can eventually lead to ACP (NAM, 2014). Heyland et al. (2013) recognized a failure to engage hospitalized elderly patients and their families with the EOL discussion. Only 30% of patients relayed EOL wishes to a family physician. Doctor Heyland, MD, (2013) MSc, Scientific Director of the Clinical Evacuation Research Unit in Kingston General Hospital in Ontario, Canada stated “We expected to see some problems-that’s why we did the study-but we were surprised by the magnitude of the problem!” (AHC Media, 2013). He was referring to patients who do not discuss their wishes about EOL with their doctors, communication is a key element.
A practitioner’s sensitivity when speaking of EOL issues is never more challenged then when speaking to patients with heart failure (Barclay, Momen, Case-Upton, Kuhn, and Smith, 2011). Presumptions are made regarding the practitioner and patient avoidance in having this type of conversation may be due to the Quality and Outcomes Framework. It does not include long term care such as ACP, but rather, focuses on drug management. Barclay et al. (2011) recommendation holds that patients may be open to this type of conversation if practitioners who they are familiar with are gentle, open, and truthful; but only at the patient’s own rate of inquiry. Patients with dementia are in progressive cognitive decline. Unfortunately, the discussion of EOL care is often not started or started too late for the individual with dementia (van de Steen et al., 2014). There is a clear sense that reaching out to patients and their families before they do not have the ability to make their own decisions was of the utmost importance. In patients with dementia, initiating this discussion is crucial before it becomes difficult to distinguish patient wishes and preferences as opposed to family wishes and preferences.
Optimal timing for discussion may be stalled and the possibility of patients’ health decline may be inevitable (Luckett, 2014). Using sensitive communication appropriately regarding patient prognosis is crucial because life expectancy may be overestimated. The timing for communication is never ideal, especially when it refers to death and dying. In a cross-sectional online survey conducted by Raaijmakers et al. (2013) using EOL questionnaires in a Dutch population, indicated a majority were open to discussion of EOL care; though practitioners rarely asked.
Fowole et al. (2013) recommend effective communication could extend quality improvement through the use of a communicative consultation intervention approach, rather than a communicative integrative approach, or a combination of both. Participants of twenty studies included in this systematic review were seriously ill patients. For example, an integrative approach presented palliative care and services into the daily routine, such as, education and managerial skills. The consultative approach involved additional help as needed, such as, palliative care consultants. When using a consultative approach, its impact was associated with improved patient and family outcomes. The researchers of this study also suggested inclusion of theory and quality improvement methods in the communication process. The importance of expertise of the subject matter was unmistakable when using a consultation approach.
It was determined that practitioners need to give meaning to EOL discussions and become joint partners with patients and relatives in the initiation of ACP (Wilson, Gott, and Ingleton, 2011). These researchers explored patients’ perceptions regarding risks associated with the process of informed decision making with EOL care issues. While the authors realize there are many patient perceived risks, the authors ultimately stated that the decision process in EOL care is multifactorial (Wilson, et al., 2011). Patient understanding regarding ACP is of particular benefit for all parties involved in EOL decisions. This study also found conflict in the comprehension of choices available to patients; as well decision-making among service providers and the general population concerning palliative care. Increasing the public’s awareness regarding these issues will have to be significant
Brinkman-Stoppelenburg, Rietjens, and van der Heide (2014), reviewed 20 studies that reviewed complex interventions meant to increase ACP communication. Examples from the twenty studies included: Respecting Choices program, Let Me Decide program, and ACP discussions with numerous other self-developed interventions. These types of interventions were reported to increase the obedience regarding patient EOL care wishes and preferences, but were not clear about medical treatment, except for palliative or hospice care. Despite the added reassurance when using a complex intervention for patient preferences, the authors concluded that outcome measures would be preferable if studies were standardized, concentrating on patients and family experiences. In addition, the quality of communication is a difficult item to measure due to instrument inconsistency and measurements used (Houben et al., 2014). While referring to ACP efficacy, interventions could be more effective if they would have been introduced earlier during the course of the illness. In the future, the authors suggested that ACP needs to be implemented in a regular clinical setting where the quality of communication can be measured by outcomes.
A systematic review by De Vleminck et al. (2013) included primary research, barriers and facilitators, general practitioners, and patient participation in ACP; 16 studies met the inclusion criteria of the 442 articles. Advance care planning influencing practitioners perceived barriers were found to be in the deficiency of communicative skills, a feeling that patients need to be starting the EOL discussion, struggling to find the right moment, and anxiety over depriving patients of hope. Six factors to facilitate a practitioner in the promotion of advance care planning:
The accumulation of various skills e.g. communication
Skills to perceive future health problems that could affect a patient
The skill to know patient cues given to initiate advance care planning
Their personal conviction of whom should be involved in advance care planning
Their long-term relationship with the patient
Their understanding that a home environment may provide ease of conversation
A closer look at what facilitates ACP discussions is necessary. Sniff et al. (2015) recognized it is of utmost importance to reach out to patients and families before decision making abilities are lost and could not be communicated. Rhee, Zwar, and Kemp (2012) also concluded in their study, there are differences in the way practitioners communicate within a primary care setting as opposed to other healthcare settings such as acute care. This premise indicates that primary care settings rely on the personal nature of longer term relationships which emphasize the continuity of care.
A systematic review excluding older adults who had cancer, heart failure, chronic pulmonary disease, and dementia; looked at older and frail adults regarding EOL care discussions (Abba, Byrne, Horton, and Lloyd-Williams, 2013). Researchers noted that many of the studies discussing EOL care concentrated on patients with major illnesses and not on frail and older adults without a major illness. Reviewed studies established there was an aversion on the part of the families to discuss EOL care. A minority of this population expected someone else to make EOL decisions for them. The majority preferred having a chance to discuss these matters with their families. An additional reason for the lack of discussion was due to the uncertainty of future illness and decline. Challenges remain, encouraging effective discussions reflecting older and frail adults EOL preferences is needed. The researchers suggested that practitioners and policy makers need to consider the issue as well. For older adults with serious illnesses, Auriemma, et al. (2014) reported individuals who had stability regarding their EOL preferences, usually by having an AD. Individuals who had preserved person centered decision making and conveyed their choices, were maintained even after the person could not convey them any longer.
Evidence has found to be very limited regrading interventions that encourage EOL discussions for people who are considered to be healthy/well (Abba, Byrne, and Lloyd-Williams, 2013). The researchers acknowledged that few studies produced evaluations. Of those that did: the first was a public information roadshow that used a questionnaire as a referral; the second used a high-quality educational booklet in collaboration with academic staff and older people as life planning workshops; the third was a public lecture program in Japan and the topic was- home based EOL care; the forth was for people who attended a course in self-management of a long illness called Expert Patients. The researchers concluded lack of publications must be due to projects not being evaluated, or evaluations have not been conducted because this is still a fairly new area of practice and research. A suggestion was offered, in an effort to make a passageway for decreasing fears that may come with discussioning death and dying, an effort would be to normalize death with projects regarding EOL care in the long run. Healthy communication is a crucial and resounding theme, an important topic of EOL care as advised by the (NAM, 2014).
Advance Care Planning Implementation
Lund, Richardson, and May (2015) focused on factors that promoted or inhibited ACP on a clinical routine basis. This systematic review concluded that healthcare professionals needed a structured framework for implementation. Structuring would allow the involvement of individuals and healthcare teams to interact in practical manner preceding and during ACP. A practical intervention will be one that facilitates dialog. The focus will be on healthcare as well as patients having the simplest tools possible to assist in decision-making. The simplest tool will not need a healthcare specialist and will increase the willingness for participation. Integration of ACP cannot be left to the will of healthcare teams or individual practitioners. It can be facilitated by community members vested in structured standardized clinical guidelines.
Furthermore, Lund et al. (2015) acknowledge, rather than seeing ACP as a series of components, it is necessary to see preferences/decisions made as consequences based on a patient’s individualized/customized choices. Emphasis is to be placed on what supports the intended results in planned implementation and evaluation in a clinical setting. The systematic review evaluated studies based on the view-point that members of the healthcare team should be the ones initiating ACP for their patients and relatives. These reviewers recognize that much is missed in the studies regarding the process for implementing and delivering ACP. It was also recognized that health care teams need to improve their understanding and the factors promoting or inhibiting interventions in ACP outcomes. Study findings were scarce regarding ACP intervention evaluations.
Clinical Practice
*It is well established that health care professionals are able to promote “formal decision making” (Mullick, A., Martin, J, and Sallow, L., 2013, p1). Practitioners assisting individuals during this independent process, contribute to the future care of individuals, particularly, when they lose the ability to communicate for themselves. A systematic review conducted by Frost, Cook, Heyland, and Fowler (2011) found that EOL care is a touchy subject when decision-making had to be addressed in an acute/intensive care setting. Studies found that many factors contributed to decision making, such as, geography, religion, race, and culture; in the end this highly emotional subject is considered ambiguous. Tolerating ambiguity has crossed over into health care technology. Practitioners need to know information regarding patient ACP, is not aided, as it can be with technology.
Heyland et al., (2013) reported on the topic of preferences regarding EOL care and the lack of documentation of patients before hospitalization. The sample consisted of N=278 patients and N=225 family members that, A) Thirty percent of patients made their wishes for EOL care known to a primary (family) care provider, while 55.3% had done so with another healthcare team member and, B) Only 30.2% had documentation in their medical record for EOL preferences, though 69.7% indicated they did not have documentation of their EOL preferences in their medical record. When patients did discuss EOL issues, their wishes are seldom placed in their medical records leaving no direction/instruction for guidance. The authors concluded that this omission is a medical error that must be reduced.
Wilson et al. (2013) identify that the lack of incorporation of ACP documentation and the non-existence of documents in the electronic health record is a healthcare disparity. In this study only 33.5% of the patients with ACP documentation had been scanned into an electronic health record. They propose a standardized location in the medical record which also needs to be highlighted and prioritized.
According to NAM (2014) it became evident ACP allows patients and families the respect of honoring patient preferences during their EOL care. In a systematic review conducted by Brinkman-Stoppelenburg, Rietjens, and van der Heide (2014), there were comparisons made assessing the effects of ACP with persons who had an ACP and those who did not. In this review, concerns that were included in ACP: patient’s EOL medical treatment, the respect of patient wishes, the place in which they died, both patient and family approval of care, and the predominance of symptoms. The researchers determined written documents alone are not enough and that EOL care clearly improves with planning. Introduction and completion of appropriate documentation which provides all necessary interventions regarding patient preferences/wishes need to be readily available in the electronic health record and with the patient, their family and/or caregiver.
Despite an increase in public awareness, the percentage of people with ADs remains low (National Hospice and Palliative Care Organization National, 2013). In National Hospice and Palliative Organization reported survey of 7,900 people responded to a question asking whether they had an AD or not, only 26.3 to 38% did. This figure has only slightly increased from the 25% who reported having one in the year 2005 (Salmon & David, 2005).
Doctoral prepared advance practice nurses provide patients, other healthcare providers, and in fact whole communities with evidence-based practice innovations, information, and education for implementing a systems change (Zaccagnnini & White, 2013). Before we can begin evaluating sources/resources in the implantation of ACP; assessing a person’s understanding regarding ACP is needed.
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