AMERlCAN SOCIETY AND ITS LAWS Every society develops a more or less formal system of law to serve its interests as a. community and to promote the welfare of its members. Such systems may include C0113 C- A-, C0\...,...., wuwywm, a... "ma. 'wu-v values and views drawn from English and early American legal and social history. in practice, it is typically represented in a more formal way by the denitions contained in standard legal dictionaries, such as Black's Law Dictionary (Garnet, 2014). [t is important to be clear about which type(s) of legal rules and procedures apply to any given issue. The principles set forth here constitute the broad legal and social framework within which a large spectrum of moral, social, and human issues is addressed in American society. This legal framework is an important part of the con- temporary American death system, but it is only one such component. Some death-re- lated issues, such as cemetery regulations and cultural or religious rituals, are I10! directly addressed by the legal system. Other issues, such as different types of aided death (see Chapter 18), have challenged our legal system and remain wholly or partly outside its framework in different places. CONVERSATlONS ABOUT DEATH-RELATED MATTERS AND ADVANCE DIRECTIVES in this section, we explore thinking ahead about end-of-life care and other death-related matters through: conversations about these subiecrs; advance directives in the form of living wills, durable powers of attorney in health care matters, and the Five Wishes docu ments; and medical orders called physician orders for life-sustaining treatment (POLST). Conversations about Dealh-Related Matters Good advance care planning includes formulating advance directives. These are a wide range of instructions that in principal one might make orally but more typi cally would be set down in writing about actions one would or would not want to be taken ifone were somehow incapacitated and unable to join in making decisions. A large body of literature is available to guide people in developing advance direc- tives (c.g., Cebuhar. 2015; Fabiny 8t Sabarino, 2013; Fitzpatrick 5t Fitzpatrick, 2010; Rogne 6t McCune, 2013; Town 6: Kassel, 2014). Of course, any advance directive depends on the willingness of individuals to address ahead of time the implications of incapacitation and death for their lives and for their family members and friends. Nevertheless, Wright and colleagues (2016) learned from family members that advance care planning consistent with patients\" preferences can lead to better end-of- life (EOL) care (see also Epttcin et al., 1016; Mason, 2015). As well, McGteevy and colleagues (2016) showed that consultations concerning placement of gastrosromy tubes in seriously ill patients could provide important opportunities for establishing patient~centercd goals of care. And research by Green and colleagues (2015, p. 1088) concluded that: \"Engaging in ACP [advance care planning) increases knowledge without diminishing hope, increasing hopelessness, or inducing anxiety in patients with advanced cancer. Physicians need not avoid AC1" out of concern for adversely affecting patients' psychological well-being." Unfortunately, other research has shown that many people, including both patients and physicians, are reluctant to consider issues like these, perhaps because they seem challenging and may involve contemplating the implications of one's own mortality (Ran et al., 2014; You at al., 2014, 2015). Still, as Narang and colleagues concluded (2015, p. 601): \"Efforts that bolster communication of 01. care prefer- ences and also incorporate surrogate decision makers are critically needed to ensure receipt of goal-concordant care.\" vvlnr u." w v \"=an law\" no In fact, many efforts have been made to try to motivate people to think about these subjects and to have conversations about end-of-life care and death-related matters with next of kin, family members, and their physicians (e.g., landro, 2014). For example. since 1991 the Patient Self-Determination Act has required that indi- viduals being admitted to a health care institution that receives federal Medicare or Medicaid funds be informed of their tight to accept or refuse treatment and to exe- cute an advance directive (Urich, 2001 ). Such individuals must also be told about the options available to them to implement those rights. Even so, many do not exercise their right to complete an advance directivebut that, too. is within their rights. Going a step further, in 2016, the federal Medicare program, recognizing that approximately one-quarter of traditional Medicare spending for health care is for ser- vices provided to Medicare beneficiaries in their last year of life, authorized compen- sation for a new, separate, and billable service in the form of payments to physicians and other primary health care practitioners for engaging in advance care planning regarding endof-life care and patient preferences. In addition, hospice programs have long undenaken similar discussions with the individuals and family members whom they serve and the National Hospice and Palliative Care Organization's Caringlnfo program offers free resources to help people make decisions about end-oi-life care and services before a crisis. As well, information about advance care planning in Canada is available on the Speak Up: Advance Care Planning website. Furthermore, The Conversation Project (see also Volandes, 2016), a private, non- profit organiaation has undertaken to help people talk about their wishes for end-of- life care by developing free, downloadable \"starter kits" that offer simple ways for family members and health care profusionals to initiate such discussions. As of early 2017, these resources included: a general Starter Kit for adults (in English and several other languages). a Pediatric Starter Kid specically designed to help parents of seriously ill chil- dren who want guidance about "having the conversation\" with their children. I a Starter Kit specically designed to help families and loved ones of people with Alzheimer's disease or another form of dementia who want guidance about \"having the conversation." I a document on How to Choose a Health Care Proxy and How to Be a Health Care Proxy. I a document on How to Talk to Your Doctor. The Conversation Project does not envision that these starter kits will cover all pos- sible topics that families might wish to include in their discussions. it also recognizes that a single discussion might not suffice. The important point is starting and facili- tating such discussions. Our vignette near the beginning of this chapter makes clear that Donna Lee and Vikki Lianne Moritsugu bad at least discussed organ donation with some family members before their untimely deaths. Conversations about end-of-lifc care and other death-related matters among fam- ily members and their health care providers are valuable in themselves. Ultimately. they might be expected to lead to implementation in the form of written advance directives. Some such documentssuch as directives on organ and the disposition of one's body. or the distribution of one's estat come into force at the time of or after one's death. We discuss those this chapter. First, we consider advance directives directly conceme about health care before death, such as living wills, durable powers of attorney in health care matters. and the \"Five Wishes" document. as well as Physician Orders for Lierustaining Treatment (POLST). Living Wills Living wills were originally developed in the early 19705 as a means whereby compe- tent decision makers could express their wishes to professional care providers. family members, and friends about interventions they might desire or might not wish to permit in the event of a terminal illness. Because these early living wills had no legal standing, they could take any form. Common threads in these documents were: (I) concems about the possibility or likelihood of nding oneself in a situation in which one would be unable to take part in making important decisions and (2) concerns about the context of dying in which one might be in an unfam tar or alien environ- ment, among strangers or Others who might have their own individual or profes- sional views of what should or should not be done, and who might not understand, appreciate, or agree with the wishes of the person who wrote the living will. In response to such concerns, early living wills usually combined desires expressed by those who composed and signed them, a request that the desires be given serious consideration by those providing care to the signers, and an effort to share respon sibility for certain decisions made in specified situations. in other words, living wills sought to promote individual autonomy in death-related matters by thinking ahead about issues of life and death, formulating one's views concerning important deci- sions, and communicating them to others. They also embodied an effort by their authors to protect health care providers from accusations of malpractice, civil liabil- ity, or criminal prosecution. Early living wills typically focused on (I) a directive to withhold or withdraw treatments that merely prolong dying when one is in an incurable or irreversible con- dition with no reasonable expectation of recovery and (Z) a direcrive to limit inter- ventions in such circumstances to those designed to provide comfort and relieve pain. These living wills typically did not call for direct killing or active euthanasia. Most often, they explicitly stated: '1 am not asking that my life be directly taken, but that my dying be not unreasonably prolonged.' Most living wills were primarily intended to refuse certain kinds of cure-oriented interventions (articial means and \"heroic measures\") when they were no longer relevant (\"futile care,\" that is, care no longer expected to produce a cure), to request that dying be permitted to take its natural course. and to ask that Suffering associated Mill life-threatening illnea be eased with effective palliative care, even if such care should have a collateral or side effect of has- tening the actual moment of death. The broad legal context for living wills is the well-established right to privacy and the right of competent decision makers to give or withhold informed consent and to accept or refuse interventions even when that might affect the timing of the indi- vidual's death (Alderman 6-: Kennedy, 1997; Annas, 2004; President's Commission, 1982, 19833, 1983b; Rozovsky, 2015). Following the enactment in 1976 in California of the first natural death legislation, similar legislation (sometimes with local variations) was passed in all 50 states and the District of Columbia. Typically, such legislation: (1) specifies the cone dirions under which a competent adult is authorized to sign a document of this type; (2) stipulates the forrn that such a document must take to have legal force; (3) defines what sorts of interventions can or cannot be refusedfor example, interventions undertaken with a view toward cute, which may or may not include hydration or nutrition; (4) authorizes oral or written repudiation of the signed document by the signer at any time; (5) requires that professional care providers either cooperate with the document's directives or withdraw from the case and arrange for alternative are (consenting to do so is thus legally protected; failure to do so is theoretically subject not merely to potential malpractice liability but also to penalties that could extend in principle to loss of professional Iicensure); and (6) stipulates that death resulting from actions authorized by the legislation is not to be construed as suicide for insur- ance purposes. A presidential commission (President's Commission, 1982) and other agen- cies proposed legislative models that (1) relate to all competent adults and mature minorsnor only those who are dying; (2) apply to all medical interventions and do not limit the types of interventions that may be refused; (3) permit the designation of a substitute or surrogate decision maker in a manner similar to that described in the following section; (4) require health care providers to follow the directives of the individual and incorporate sanctions for those who fail to do so; and (S) stipulate that palliative care be continued for those who refuse other interventions. This model goes beyond the scope of early living wills and incorporates features now more typi- cal of durable powers of attorney in health care runners. Historically, living wills have n0t been without their limitations or potential dif- culties (see issues for Critical Reection #14). Like any document written down in advance of a complex and life-threatening situation. living wills may not anticipate every relevant feature that might arise. Partly for this reason, their significance and force may be subiect to interpretation or dispute among the very family members and professional care providers whom they seek to guide. Durable Powers of Attorney in Health Care Matters Because of limitations and potential difficulties associated with living wills, some pre- fer an alternative approach found in state legislation that authorizes a durable power of attorney for making decisions in health care matlers. \"Power of attorney\" is a well-established legal doctrine whereby one individual authorizes another individual (or group of individuals) to make decisions and take actions on behalf of the first individual in specific circumstances or for a specied period of time. For example, a power of attorney might authorize someone to sign a contract on my behalf to close on the sale of a house at a time when 1 am not available to do so. Historically, such a power of attorney continued in force only while its author remained competent. A \"durable" power of attorney is one that continues in force until it is revokedeven (or especially) when the individual who authorized it is no longer able to act as a competent decision maker. A durable power of attorney in health care matters is con- cerned with health care issues. Advocates argue that a durable power of attorney has two significant advantages over other written or oral directives, such as a living will. First, it empowers someone elsea substitute decision maker often called a health care proxyto make decisions on behalf of an individual in any and all circumstances that the document covers. Second, the substitute decision maker can be instructed to refuse all interventions, to insist on all interventions, or to approve some interventions and reiect others. The first advantage attempts to minimize problems arising from changing circumstances understand, simple to use, personal in character, and thorough. Intended as "a gift to ISSUES FOR CRITICAL REFLECTION your family members and friends so that they won't have to guess what you want," #14 What Are Some Criticisms of Living Wills? "Five Wishes" asks the person filling out the document to express desires about the following issues and provides guidance on each: (1) the person I want to make health care decisions for me when I can't make them for myself; (2) the kind of medical treatment I want or don't want if I am close to death, in a coma, or have permanent Although living wills are intended to preserve an individual's The persons interpreting the living will often may not do and severe brain damage and am not expected to recover from that situation, or I am autonomy, some argue they fail to achieve this. Fagerlin and so accurately in terms of the signer's actual wishes. Schneider (2004) found seven problems with living will and Living wills cannot be shown actually to alter patient care. in another condition under which I do not wish to be kept alive; (3) how comfortable argued these problems were so significant that public policy " Living wills represent a significant cost to society without I want to be; (4) how I want people to treat me; and (5) what I want my loved ones should not support their use. The problems they identified were: providing the desired benefit. to know. The "Five Wishes" document is currently structured to meet the legal require- Most Americans do not have living wills, apparently for Although these are serious difficulties with living wills and ments of different jurisdictions and is said to be the most widely used advance direc- several reasons, such as, people do not know about them, at least some of them have been identified as such for some tive in America. It meets the legal requirements of at least 42 states under their living doubt they are needed, believe they will not change the time, even Fagerlin and Schneider do not argue that living wills will and durable power of attorney in health care matters regulations; in other states treatment they receive; or view them as incompatible with should be abolished nor do others who recognize the existence their cultural traditions (see Chapter 5 on this last point). and countries, it can be used to help individuals offer guidance to their care providers. of some of these problems. Thus, Swartzberg (2004, p. 3) People cannot be certain about what sorts of treatment argued: "Do I still advise you to have one? Yes I do, simply on The "Five Wishes" document is available in versions for individuals and families, for they will want in the future and may change their mind the chance that it might do some good. The act of writing the organizations, for children ("My Wishes"), for adolescents ("Voicing My Choices"), when confronted with different circumstances. [living] will may help you to understand your own wishes now, and in bilingual versions in 28 different languages and Braille with side-by-side A living will is often not able to make clear just what a as well as providing some guidance for your family." Also, most English translations for use with English-speaking care providers. These documents, person's wishes are about the sorts of treatment he or writers argue that difficulties with living wills make it even more companion guides, and supportive resources can be previewed and/or obtained at a she desires, often because those desires are stated in terms so general that they are of little help, or because important to appoint a health care agent or surrogate with nominal price from Aging with Dignity or ordered from its website. desires become so specific that they overwhelm the ability durable power of attorney. If that is done and carried out with careful, updated communication between the individual and his POLST: Physician Orders for Life-Sustaining Treatment of the person signing them to understand all the specifics. In addition to advance directives described in this section, conversations between The living will may get "lost" and not be available when it or her proxy decision maker many of the problems associated is needed. with living wills should be alleviated. patients, loved ones, and their health care professionals might also lead to Physi- cian Orders for Life-Sustaining Treatment (Bomba, Kemp, & Black, 2012; Fromme et al., 2014; Hickman et al., 2010, 2011). POLST are voluntary, actionable, portable documents designed to ensure that seriously ill or frail patients can choose the treat- ments they want or do not want and insure that their wishes are documented and and competing interpretations of written documents; the second allows the person will be honored. POLST are medical orders signed by a health care professional; they authorizing the health care agent-and the agent-some degree of freedom in choos- become part of an individual's medical file and can be modified at any time. In this ing which interventions to accept and which to refuse. way, POLST are similar to "Do Not Resuscitate" (DNR) or "allow natural death" Durable powers of attorney in health care matters are now in force in all states orders. POLST are not an advance directive and do not substitute for a health care and the District of Columbia. Sample documents and booklets explaining durable proxy, although they can be complementary. Because they are governed by state law, powers of attorney in health care matters are available from the American Bar POLST may have different names (e.g., MOLST, MOST, POST), may or may not be Association, AARP, and many local sources, such as hospitals, long-term care facili- available in different states, and may not necessarily be foolproof (Clemency et al., ties, and hospice programs. For example, the American Bar Association (2009) offers 2016). For additional information, contact The National POLST Paradigm. a free, how-to guide on Making Medical Decisions for Someone Else that is available online. Note that any durable power of attorney must satisfy the legislative require- ments of the legal jurisdiction within which it is to be enforced. Competent legal advice should be sought to confirm this. Interested parties are usually advised (wher- ever possible) to complete both a state-authorized living will (providing general guid- ance to decision makers) and an appropriate durable power of attorney for health care (authorizing discretion within those guidelines on the part of a health care agent or substitute decision maker). Five Wishes The Five Wishes document combines many of the best elements of living wills and durable powers of attorney in health care in a way specially designed to be easy toAn Interview with Debbie Mayer Advanced Care Planning Guide, Health District of Northern Colorado Summer 2 017 Q1: I understand that our community is currently in the middle of a grant-funded project which focuses on getting people to complete an advance directive. Can you tell us a little bit about the project? {e.g. what are the main goals? Who is involved on the team and also in the community? How is the project funded? Etc.?j The Larimer Advance Care Planning Team is a collaborative effort funded by the Colorado Health Foundation, with contributions from the Health District of Northern Larimer County and community partners. Our goal is to engage and support individuals in completing advance care plans at no cost. The ACP Team offers free, one-on-one support in creating advance care plans that represent what is important to each person. We provide guidance to client in how to: Share their values and wishes with loved ones Put plans into writing and sharing them with family members and physicians Understand treatment options Update existing plans We also notarize documents, witness documents and make sure they are distributed to the local healthcare systems. Our vision is that advance care planning becomes a natural and expected part of care in our community and that adults feel comfortable discussing their end-oflife wishes, understand their medical care options and express their values with their loved ones and medical providers, ensuring that medical directives are available when they are needed. Our team is made up of4 individuals with varying backgrounds, including gerontology, law, health science and psychology. Our program collaborators include UC Health's Aspen Club, Colorado Health Medical Group, Palliative Care Team at UC Health, Associates in Family Medicine, Columbine Health Systems, Larimer County Office on Aging, and the Sharing the Care Campaign. Q2: Could you tell us a little bit about yourself, including how you came to be an Advance Care Planning Guide? | practiced with the law firm in Durango, Colorado and then served as a staff attorney with a nonprofit Legal Services in Medford, Oregon before moving to Fort Collins. While in Oregon I represented some older adults and drafted simple wills for my clients 60 and over. I then followed a desire to assist older adults in a larger capacity by acting as the Legal Services Coordinator for the Weld County Area Agency on Aging, followed by sewing as a contract attorney for Colorado Legal Services Senior Law Project before becoming an Advance Care Planning Guide with the Health District of Northern Larimer County. Although professionally and personally I understood the importance of planning, and in fact had my estate plan completed in 1995, I never understood the importance of exploring values and having the conversation until I trained as a guide. It was only recently that I realized how important sharing my wishes and documents are to ensuring | get the medical care I want. Q3: Do you think it is important for college students to have an advance directive and/or durable power of attorney in health ca re matters? Why? Yes. I think it is important for many reasons. First we never know what might happen and when. Things occur unexpectedly and if injury or illness did occur who would speak on a student's behalf? Colorado does not have a hierarchy statute like some states, meaning a parent is not automatically a spokesperson for their adult child. Colorado requires a gathering of interested persons to decide who will be the decision maker by consensus. If that is not possible, a guardian may be appointed by the court. There is also the issue of HIPAA. If an adult child is hospitalized as a parent you do not have a right to their medical information and a medical provider may chose not to disclose your child's situation without a medical power of attorney in place. Two articles that stress the importance of planning for anyone 18 and over are http:[[sundial.csun.edug2015g12(consideradvance-care-planning- while-in-collegez and htt : www.consumerre orts.or health hel - our-colle e-a e-child-in-a- medical-eme rgencyz Another article talks about how the risk is real. Accidents are the leading cause of death for young adults and a quarter-million Americans between the ages of 18-25 are hospitalized with nonlethal injuries each year. htt s: www.forbes.com sites deborahl'acobs 2014 08 15 two-documents-eve 18-year-old-should-signlli?ba7ead46e33 If tragedy did strike, or the student was simply hospitalized for a serious stomach flu ( as in the Forbes article) wouldn't a parent want the opportunity to discuss their child's condition with the doctor and make decisions if needed? Q4: This is a pretty heavy topic to think about how would you recommend getting started? I recommend starting with choosing and finding a willing and able healthcare agent. Who do you want to step into your shoes to make health care decisions if you are not able to make them for yourself. Consider who knows you well, who may understand your wishes and honor them, who might be more calm in a crisis, able to ask difficult questions and make decisions in changing circumstances. Then, consider what you would tell them regarding your wishes around health care options. You can explore Mexico. Consider selecting an alterative in the event the primary agent is unavailable. Then talk with all your chosen agents and other loved ones about your choices and what was revealed to you during your exploration of values. How to Choose a Health Care Proxy (downloadable PDF): http://theconversationproject.org/wp- content/uploads/2017/03/ConversationProject-ProxyKit-English.pdf Compassion and Choices https://www.compassionandchoices.org/eolc-tools/ The Conversation Project Starter Kit http://theconversationproject.org/ Five Wishes https://www.agingwithdignity.org/ UNM Health Sciences Center Institute for Ethics http://hscethics.unm.edu/directives/values.html Q5: Are there any articles or stories on the topic that you think would be helpful for students to check out as they begin working on their advance directive? https://www.youtube.com/watch?v=Bar0qZTUGdw ( NHDD you tube) https://www.youtube.com/watch?v=mPtu-FpY1Kw - Whistle video ( 5 steps to ACP) https://youtu.be/E_BWRGIf3Gk Having the Conversation . https://vimeo.com/109633109 - Wisconsin video - 10 minutes http://www.advancecareplanning.ca/wp-content/uploads/2017/04/ACP-personal-story-Amy- Tan-MD-for-Conversation-Project.pdf ( story of 24 year old resident in car accident) Stories and other videos found on the Conversation Project website: http://theconversationproject.org/your-stories/ Q6: Is there anything you wish people understood better about advance care planning, maybe a common misperception or misunderstanding? There is a common belief that advance care planning is only for those older or with serious illness. In fact, it is not just an end-of-life scenario but can be valuable and crucial if an unexpected injury or accident occurs and you find yourself in the hospital unable to think clearly or unable to speak. It is true that older, rather than younger, people use advance directives, but every adult should have one. Younger adults actually have more at stake, because, if stricken by serious disease or accident, medical technology may keep them alive but unresponsive for decades. Some of the most well-known "right to die" cases arose from the experiences of young people (e.g., Karen Ann Quinlan, Nancy Cruzan) incapacitated by tragic illnesses or car accidents and maintained on life support. Some may think you give up your rights. Naming a health care proxy or agent does not take away any of your authority. You always have the right, while you are still competent, to override the decision of your proxy or revoke the directive. Some think that it is OK to wait to do any advance directives and keep thinking. I think it is best to consider what you would like and at least get the POA in place. It is true that most of us have some ambivalence about what we would want. That's OK, because treatment near the end of life can becomplicated. We can't predict all the facts and circumstances that we may face in the future, and treatment wishes may change. But it is important to appoint your health care agent if you have someone whom you trust