An Actual Advance in Advance Directives: Moving from Patient Choices to Patient Voices in Advance Care Planning
Since the concept of the living wills emerged nearly 50 years ago, there have been practical challenges in translating the concept of an advance directive (AD) into documents that are clinically useful across various healthcare settings and among different patient populations and cultures. Especially, challenging has been the reliance in most ADs on pre-selected “choices” about specific interventions which either revolve around broad themes (e.g., “prolong life / do not prolong life”) or whether or not to utilize particular interventions (e.g., CPR, mechanical ventilation), both of which about most laypersons know little and, more importantly, lacking context, prove to be of limited meaningfulness. Moreover, whether by foundational frame, decade-long misunderstanding in medicine and bioethics, or different societal customs, these ADs present decision-making responsibility for initiating, continuing, or withdrawing medical interventions as a patient responsibility—creating a burden for which most patients are unprepared—and hence reducing healthcare providers’ responsibility to mere technical application or customer service. At our institution, significant efforts have focused on embracing the unique and complementary responsibilities of patients (articulating their goals, values, and preferences) and physicians (using medical expertise to reach patient goals) for enabling appropriate plans of care. This includes re-structuring our AD form to more accurately represent patient’s values as the frame within which physicians are responsible for determining appropriate care. Rather than specifying interventions, the AD makes patients responsible for specifying what matters to them as well as what they value in terms of function, interaction, and level of acceptable burden, thus providing clear goals for clinicians to pursue—or when goals are not reachable by available medical interventions, to acknowledge and allow for logical shifts to what may be achieved, including, in end of life contexts, care focused on respect and dignity.
KeywordsAdvance directives Advance care planning Clinical ethics Engagement Public
Advance directives: a brief historical background
It has been just shy of 50 years since the very idea of an advance healthcare directive was introduced by Luis Kutner in his groundbreaking article, “Due Process of Euthanasia: The Living Will, a Proposal” (Kutner 1969). Kutner, a liberal, activist lawyer, was one of the co-founders of Amnesty International and had an abiding concern for promoting and protecting individual human rights. This concern shaped his concept of a “living will,” a term he coined and an idea which Kutner framed within two recognized legal notions: first, the important differences in motive when comparing “mercy killing” and “murder with malice,” and second, the right of patients to refuse medical interventions (Kutner 1969). In short, Kutner argued that a patient could, as part of the legal right to refuse treatment, offer up a “testament permitting death” and a “declaration for bodily autonomy,” i.e., a “living will” in which one could control the decisions being made about one’s medical care at the end of life even when unable to directly participate in decision-making at that time.
Practically, his concept got translated into actual documents with language that is strikingly different than the language of most of today’s advance directives. One such version, produced just a few years after the original idea of a living will was introduced, by an organization known as the American Euthanasia Society, provides a helpful example.
Of particular import in this typical, early advance directive is the logical progression from the acknowledgement of death’s certainty (“Death is as much a reality as birth, growth, maturity and old age—it is the only certainty.”) to one not fearing death per se but rather the all-too-often sequela associated with dying (“I do not fear death as much as I fear the indignity of deterioration, dependence and hopeless pain.”) such that one seeks a merciful dying (“I ask that medications be mercifully administered to me for terminal suffering even if it hastens the moment of death.”). The focus, in short, is thus not on rights, as one might have expected given Kutner’s pedigree, but on experience, especially the experience of loss of control associated with the inevitability of dying, e.g., the loss of control over one’s previous independence and function, of how one relates to others, of how one experiences physically being in the world (with pain or its absence). Moreover, these experiences are identified as indignities, as undignified. Hence, the document’s main focus is on the plea for a return to dignity—via the semblance of control—by complying with the written request expressed within the document: “Although this document is not legally binding, you who care for me will, I hope, feel morally bound to follow its mandate. I recognize that it places a heavy burden of responsibility upon you, and it is with the intention of sharing that responsibility and of mitigating any feelings of guilt that this statement is made.”
In essence, this early AD document, this forerunner of the kind of advance directives widely available decades later, says, first, “I will lose control as my death approaches” and second, “I fear this and so, to avoid such loss of control, I am trying to exert control by prospectively asking for relief” even though, third, “this prospective attempt at control – this future control – is dependent on you – you who will actually be in control of the care I receive because I will not be in control of the care I receive while dying.” Thus, while the underlying aim in creating this document was to address patients’ rights to control their own decision-making, to “make choices” regarding end of life care, the language that is used emphasizes something quite different; it is more focused on what might be thought of as the “moral experience” associated with facing the end of one’s life, e.g., fear, indignity, hopelessness, mercy, responsibility, guilt.
Then and now: complex values underlying complex forms
In the early 1970s, an advance directive was a simple, one-page form articulating elements of the moral experience of facing one’s own death; 45 years later, the kinds of ADs that patients can readily find online or through their physicians or hospitals are typically small booklets that contain multiple pages for making “choices” about a wider array of end of life care options: appointing legal representatives as well as completing a living will along with discussing organ donation, disposal of remains, preferences related to funeral services, and all sorts of related matters. Such is the case with the advance healthcare directive created at Cedars-Sinai Medical Center (2015) and the same is true for any of the ones available from any number of major health systems, academic medical centers, or state health departments (Kaiser Permanente 2005; California Medical Association 2009; University of California Los Angeles 2015).
This request is made after careful consideration. Although this document is not legally binding, you who care for me will, I hope, feel morally bound to follow its mandate. I recognize that it places a heavy burden of responsibility upon you, and it is with the intention of sharing that responsibility and of mitigating any feelings of guilt that this statement is made.”
This language, in being explicit about the sense of moral responsibility and experience, is also drawing attention to the fact that the signer is not only cognizant that he or she is in relationship—be it with family, friends, or with healthcare providers—but that such relationship is of core importance; why else worry about feelings of guilt that others may have?
A simple search of the Internet reveals similar findings from other institutions within our local context: the California Coalition for Compassionate Care (2015) published a workbook for people with intellectual and developmental disabilities called Thinking Ahead: My Way, My Choices, My Life at the End that is explicit: “Talking about death and dying is hard, but being prepared for that time makes sure your choices are respected. Making your own decisions shows you are in control, now and up through the very end”. Other publications focus on patient or surrogate responsibility for making medical or healthcare decisions, such as the Kaiser Permanente (2005) Advance Directive Kit, which explains that, “If you are able, it is up to you to make all of your healthcare decisions… This Kit allows you to tell others what kind of healthcare you want to receive when you are too sick and unable to make decisions about your care”. Other websites emphasize “Your rights to make decisions about medical treatment” (University of California Los Angeles 2015) or exhorte: “Make Your Wishes Known” (Cedars-Sinai Medical Center 2015). The overall message, explicit or implicit, in the aforementioned institutional documents is one of personal choice and patient-controlled decision-making, sentiment further echoed in the popular press as well (see Brody 2012; Brownlee 2012; Chen 2010; Healey 2015; Lopez 2011; Span 2009).
The language in these documents, in other words, is just as clear as that found in the 1973 advance directive, although the emphasis is quite different. Indeed, whichever one of the modern advance care planning documents one considers, what is emphasized is that what matters is what a person wants or does not want—and as such, there is a strong implication that what is of core importance is the individual—me, and me alone. This may not be surprising given the way in which autonomy has been promulgated as one of the core, if not the primary, ethical principle by which medical decision-making is to be guided (Beauchamp and Childress 1979) and the widely shared belief that a patient’s (or surrogate’s) choice is to be the primary driver of the healthcare that patient’s receive (Cantor 2001; Silveira et al. 2010). As such, this dominating emphasis on what people want, this focus on patient choice, has extended beyond AD documents and so it is not just in these particular documents where we find this dominating emphasis on what people want (Brody 2012; Brownlee 2012; Hickman et al. 2005).
A living will (or “medical directive” or “declaration” or “directive to physicians”) is simply a written instruction spelling out any treatments you want or don't want if you are unable to speak for yourself and terminally ill or permanently unconscious.
This phenomenon occurs outside of the USA as well. Just to give a few examples, consider the Dalhousie University (2017) End of Life Law and Policy website describing advance directives in terms of what medical treatment individuals want; the same may be found in the UK’s Advance Directive Fact Sheet (Age UK 2017), the Swiss Guidelines for Advance Health Care Directives (Kalbermatten-Casarotti et al. 2012), and in Singapore’s Ministry of Health’s (2013) educational materials regarding ADs: Advance Medical Directives are all about putting into writing what kind of treatment you do or do not want.
And yet, when thinking about the types of interventions ADs are supposed to capture as “wanted” or “unwanted,” in many core ways, the question of “wanting” stands out as the wrong frame, as the wrong question. Very few people “want” or would “choose” intubation or mechanical ventilation, cardio-pulmonary resuscitation, major invasive surgery, dialysis, artificial nutrition and hydration, life-long medications, permanent disability, or even to live in an extended care facility. Rather than being wanted, these interventions, procedures, resources, or supports are what people might tolerate, even come to accept, “IF…”—and what is necessary is that one “fill in the blank.” Or conversely, these are things one might never tolerate or come to accept “IF”….—and again, in contexts or circumstances that require someone to “fill in the blank” of the “IF…” Hence, the question for considering these types of questions and interventions and procedures hinges on imagining the answer to, “If what?”
The answer to the question, “If what?” is one that many ADs (including those references so far) contain within their many pages, namely, what kind of life does one find acceptable, or even more emphatically, minimally acceptable, such that one would be willing to have this or that treatment in order to attempt to achieve that minimum level of function or quality of life? At the core, in other words, for the person considering and completing an AD, what is at issue is not what one wants, but what matters to that person, what one is willing to live with for his or her life to have meaning? And if such meaningfulness is not possible, then life is no longer to be judged to be worthwhile; death becomes preferable. Patient voice, as opposed to unfettered choice, thus appears to be the foundation upon which ADs are to rest.
Re-designing advance directives
Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness.
Practically, this is starting also to be adopted by institutions and organizations as they revise and reconfigure their ADs (Kaiser Permanente 2013; NSW Ministry of Health 2017; University of California Los Angeles 2016).
It is with these shifts in mind that starting in early 2016 Cedars-Sinai Medical Center set out to re-conceptualize, re-organize, and then re-design how its institutional AD ought to look, and more importantly, how it could move away from the language and emphasis of “wanting” in order to better capture the sense of what matters to people and, accordingly, what individuals believe to be of value as it relates to healthcare—the interventions and outcomes, i.e., what they would find acceptable.
The core issue here is to explore how the people who choose to fill out this document intend for the people who must use it to understand the goals, values, and preferences it contains. Within this re-conceptualized, re-designed, and re-organized AD packet, the intention and hope is to create a tool that is useful for the person who is considering these questions as well as for the care providers who may turn to it for guidance so that when that person becomes a patient, their personhood guides their healthcare no matter the circumstances, interventions, procedures, or resources in question.
An advance in advance directives
Without a doubt, this proposed advance directive is, in many ways, a far cry from Kutner’s original conception, and from that early and quite elegant articulation of a living will found in Fig. 1. But it is in line with what Kutner had in mind in grounding the concept of a living will in a moral concern which is itself framed within broader social engagements. Hence, the aim is to create a document that not only re-emphasizes that it is people’s values that need to be captured in an advance directive, but that this document is in line with what are fundamental responsibilities’ ingredient to good medical decision-making, namely, physicians must take into equal consideration the scientific dimensions of medicine and the personhood dimensions associated with being a patient—of being this patient, here, now.
To be sure, in the push toward capturing the nuance, variability, and variations on the theme of what matters as one thinks about one’s life, the prospect for illness, debilitation, decline, dying, and eventually, death, there will be great resistance to this kind of openness and explicitness about who and what we are as human beings in the world. Indeed, there is a strong impulse in medicine, and in many sectors of bioethics as well, toward reductionism and simplification, of wanting to make AD forms simple—as if patients can capture their lives simply—and having these forms serve as a kind of recipe book for clinicians. Yet, that is the challenge of advance care planning more generally, as a moral experience. Things are more complex, more nuanced in actual practice, in actual experience, in the dynamic of human life. That is why it was decided, as an institutional initiative, to embrace the unavoidable, embrace the inherent complexity that is human life, by creating an advance directive document and advance care planning guide that reflect the questions and concerns that arise when thinking imaginatively forward toward a time when life will, inevitable, be different—and as such, what it is like to be a human being, in moments of health, in moments of illness, in moments of recovery, ever facing life, here, now, and all the way through unto death. Thus, that big step of placing emphasis where it belongs—on the patient’s voice in articulating what matters most, in the face of which, care is to be pursued, whether care entails the provision of medical interventions or not.
Items were developed and revised in consultation with primary care, specialist, and palliative/supportive care medicine physicians and nurses, ethics consultants, social workers, chaplains, and hospital administrators. Social workers reviewed and elicited patient feedback on the items, wording, and design from patients and families in our monthly community advance directive workshops.
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