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Part 2: nursing and advanced care planning--how its all supposed to work and the critical roles for nurses.

In Part 1 last July we explored key historical developments that have led to our current situation concerning end of life processes and care including: our aging population, increased expectations for life saving and life extending medical care, the evolution and expansion of hospice services, and the legal recognition of patients' right to decide about their end of life care directly or through advance directives. However, there is still a large gap between how people indicate they wish to die (mostly at home with family and friends free of pain or suffering), compared to the vast majority who actually die in institutions, too often with advanced/aggressive medical care that they do not fully understand, may not want, and which often does not improve the quality or even the longevity of their remaining life.

So how do we improve the system to help ensure that people of all ages understand their rights and options, think through and legally document their personal preferences for end of life care, discuss these choices with loved ones and their health care providers, and interact with a responsive and compassionate health care system to ultimately have the kind of death they are seeking? This can best be accomplished through system improvements at the individual level to encourage and support people to take thoughtful action regarding end of life choices throughout their lifespan and the training of clinicians and institutions to engage with their patients about these issues at every appropriate opportunity. A recently released Institute of Medicine (IOM) report called "Dying in America" has studied these issues extensively and makes a series of far reaching policy recommendations for action at all levels. (1)

This article will briefly describe the basic documents that help individuals legally declare their wishes for end of life care. It will then identify the key roles that nurses play in helping patients and their families understand the importance of advanced care planning and helping to ensure that their choices are honored to help ensure that effective advanced care planning becomes the societal norm and not the exception.

Advance Care Planning Primer

In its most basic terms, advance care planning involves learning about the types of medical decisions that might need to be made in the future, considering those choices ahead of time, letting others know about personal preferences, and identifying someone to make these decisions if he or she is no longer able. The National Institute of Aging points out that advance care planning is not just about old age. At any age, a medical crisis or traumatic injury can leave someone too ill and/or incapacitated to make his or her own healthcare decisions. To ensure that care is consistent with an individual's desires, everyone is encouraged to put their values and choices into an Advanced Directive, a legal document that goes into effect when the patient is unable to speak for him/ herself. It helps others (family members, friends, or healthcare providers) know what type of medical care they want and what kind they don't want. (2)

Values Clarification: Ultimately the choices that an individual makes about end of life care are based upon their values--what makes sense to them, what feels "right," and what would be ideal. There are no right or wrong answers when it comes to these personal values. Efforts to assist people think about them need to be neutral and accepting. Everyone is entitled to their own values regarding end of life choices and care.

There are several excellent tools to help people think through their values. The UNM Institute for Ethics has a comprehensive and open-ended downloadable "Values History" form to assist individuals in making health care choices in accordance with their personal values (http://som. unm.edu/ethics/ docs/values-history.pdf). Compassion & Choices, a national nonprofit that is committed to helping everyone have the best death possible provides a variety of online resources including an easily completed Values Worksheet that can be accessed at https://www.compassionandchoices.org/ userfiles/Values-Worksheet.pdf.

Advance Directive: In New Mexico, the Uniform Health Care Decisions Act (24-7A-1-18 NMSA 1978) is the legal basis for advance directives. This law can be accessed at http://som.unm.edu/ethics/ docs/ uniform-healthcare-decisions-act.pdf. It specifies the right of an adult or emancipated minor, while having capacity, to make his or her own health-care decisions and make an individual instruction to tell medical providers how they want to be treated if he or she is dying, unconscious, or demented and can not articulate decisions about emergency care or other treatments. These may include decisions about CPR, ventilator use, artificial nutrition (feeding tube), artificial hydration (IV fluids) or various comfort care measures like supplemental oxygen, pain or anxiety medications or emotional/spiritual counseling. Several websites that provide these state specific forms are listed in the reference section. (3)

Power of Attorney for Health Care: This is a legal document to name a healthcare agent (sometimes call a "proxy") to make medical decisions for the patient when he or she has lost capacity and is no longer able. The designated Health Care Decision Maker should be familiar with the patient's values, wishes and choices as reflected in their Advance Directive, if available, but if not based upon their understanding of the patient's wishes or their best judgment. Having a designated agent and an alternate in case that person is unavailable is particularly helpful when unforeseen situations arise, like traumatic injuries, as the agent can be more dynamic than an Advance Directive. The choice of an agent is critical to ensuring the desired outcome so it should be someone that the patient trusts, can talk with about sensitive issues and has confidence that they can represent their wishes, even if they differ from the desires of family members or medical providers.

The Do Not Resuscitate (DNR) Order, signed by an authorized provider, tells medical staff in a hospital or nursing facility that the patient does not want to be resuscitated if their heart stops or is beating unevenly. Without a clear and posted DNR order, in most cases the hospital medical staff will make every effort to restore the normal heart function. There is also an EMS DNR form that alerts first responding emergency medical services personnel that the patient does not want CPR or other life saving treatments. In the absence of a specific form provided by the state EMS authority, it is possible that the EMS system may resuscitate a patient if 9-11 has been called, even if an Advance Directive can be produced at the scene. Here is a link to the New Mexico EMS DNR Form and Instructions: http:// archive.nmems.org/documents/DNR EMS form.pdf

And finally, a number of states have implemented a form for those with life limiting and serious/ terminal conditions that combines the patients wishes with a signed medical order so that it can be used for both out of hospital settings as well as within institutions. This is commonly called the "POLST Paradigm." In New Mexico a group of concerned professionals have created the NM Medical Orders for Scope of Treatment (NM MOST) to help healthcare providers discuss, document and honor the treatment choices of their patients. The NM MOST form is currently in use in some areas of the state by EMS and in homes, assisted living facilities, nursing homes and hospitals. It is hoped that a consistent statewide approach can facilitate more patients discussing their wishes with their providers and ultimately having their wishes honored, regardless of the setting. It is a portable, authoritative and immediately actionable physician order that is consistent with the individual's wishes and medical condition and will be honored across all treatment settings. The NM MOST form and information can be found at www.nmmost.org.

As more New Mexicans consider their values, have conversations with family, friends, and caregivers, and document their choices on the forms described above, the chances are greatly increased that they will have the kind of death they seek.

Nursing Roles in Advance Care Planning

Historically, nursing has a long and respected tradition of caring for patients and their families throughout the lifespan. Nurses are relied on to be at the bedside to assist patients assimilate information about their health, understand complicated options offered and rationale for diagnostic testing, decide on treatment options and offer supportive and comfort care when active (therapeutic) treatment is no longer in the best interest of the patient.

Over the past several decades, providing this level of care has become increasingly difficult as a result of increased acuity of hospitalized patients, increased complexity of care, decreased length of hospital stays, increase in age of population and many other factors. These challenges require nurses to draw on their own values to inform approaches to clinical practice. According to the ANA Code of Ethics for Nursing ... "nurses have strong ethical responsibilities ... this code of ethics makes explicit the primary goals, values and obligations of the profession." It highlights the need for nurses to incorporate the principles of autonomy (right to self determination) beneficence, non-malfeasance, and justice in their practice and care of patients. In order to accomplish this, we suggest that nurses must first decide on and accept their own set of values. www.nursingworld.org/codeofethics.

Further, an appreciation for values and human dignity is a prerequisite to assisting patients with complex, often difficult, end of life decisions. Some of this knowledge comes from one's own personal history, culture, religion, family and education. Nurses, in their professional education, often receive training in ethics and values that guide them in their emerging professionalism. However, a recent study by Grady et al., suggests that far fewer nurses than might be expected actually have exposure to training in ethics and values. Similar to findings reported by Grady et al., a study conducted by one of these authors (CB and colleague) also found that nurses reported confusion as to what an advance directive actually is, the means of assuring it is a current and valid document and who had primary responsibility for talking with patients about end-of-life issues and securing a valid advance directive. (4)

Findings such as these underscore the need for ensuring that nurses are well prepared through basic, graduate or continiuting education to assume roles in assistng patients with their advance care planning. Further, nurses must understand and acknowledge how their own personal values inform interactions with patients and may differ from their patients' values in order to assist patients with difficulties around end of life decision making.

While the focus with NM MOST and other efforts for ensuring that Advance Directives are properly completed is usually accomplished towards the end of life when patients are already in a health care facility, this may be too limiting an approach to increasing the overall proportion of individuals who have advance directives. Current research continues to show that a very small percent of the population (20% -30%) have advance directives in place. Some questions that should be addressed include: 1) why is that? 2) what approaches are needed to change those low statistics? and, 3) how/ where best to hold such discussions earlier with those who are mostly healthy? We suggest that the point of encounter for these issues needs to be moved more towards primary care settings and further into the community for maximum impact.

The Gundersen Health System in LaCrosse, Wisconsin has done just that. Through their program, "Respecting Choices--Advance Care Planning," nurses, physicians, and civic organizations are encouraging conversations among individuals in the community concerning end of life wishes and facilitating completion of appropriate documents all before entering a hospital. (http://www. gundersenhealth.org/respecting-choices) This discussion is not limited to the elderly or those with life threatening illnesses, but focuses on approaches to include all individuals across the life span. As a result of this expansive and directed approach, it is reported that 98 % of individuals have advance directives at the time of death. Promising efforts such as this have and continue to be adopted in other communities.

In summary, we recommend that these end of life discussions must move out into the community, must engage a wide array of individuals of all ages, cultures, ethnicities, ages and socioeconomic backgrounds. Further, we recommend that basic nursing programs, continuing education offerings and advance practice education integrate values clarification, ethics and ethical theory and their application to clinical practice. Nurses, in collaboration with other disciplines, have the background, communication skills and holistic approach to care necessary to assist patients and their families with these challenging decisions.

References:

(1.) Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press, 2014. http://www.iom.edu/Reports/2014/Dying-In-America-Improving-Quality -and-Honoring-Individual-Preferences-Near-the-End-of-Life.aspx

(2.) National Insititute on Aging Information Center. Advance Care Planning: Tips from the National Institute on Aging. Gaithersburg, MD. 2014. www.nia.nih.gov/health

(3.) State Specific Advance Directive Forms:

* https://www.compassionandchoices.org/what-we-do/ advance-planning/

* http://www.aarp.org/relationships/caregiving/info-03-2012/ free-printable-advance-directives.html

* http://som.unm.edu/ethics/ docs/nm-advance-directives.pdf

(4) Grady C, Danis M, Soeken KL, et al., 'Does Ethics Education Influence the Moral Action of Practicing Nurses and Social Workers?" Am J Bioethics (2008): 8(4):4-11.

Caroline Burnett, ScD, RN, is retired from Georgetown University where she is an adjunct Professor of Nursing and Oncology. While on faculty she taught nursing and ethics, served on the ethics consult team, conducted research and published in the areas of patient information-seeking and decision-making behaviors.

She lectures on bioethics to health care professionals, served as a member of the ethics committee at CHRISTUS St. Vincent Regional Medical Center and is on faculty of the Northern New Mexico Family Medicine Residency Program.

Barak Wolff, MPH, is a part-time policy analyst with the NM Senate Public Affairs Committee and volunteers on the Executive Committee of the Compassion & Choices NM Campaign. Mr. Wolff, a former Director of the statewide Public Health Division, worked extensively with rural health, EMS and trauma systems, injury prevention and immunizations during his 25 year tenure with the NM Department of Health.
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Author:Burnett, Caroline B.; Wolff, Barak
Publication:New Mexico Nurse
Geographic Code:1U8NM
Date:Jan 1, 2015
Words:2359
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