Expanding Medical Technology
It is impossible to deny that all living beings ultimately will die. However, dying is different today. Technological developments in medicine that began to be developed during the 1960s and 1970s, as Sabatino (2010) has noted, “Thrust medicine into a new world where for the first time, it often became difficult to distinguish saving life from prolonging suffering and death” (p. 213). During the past 50 years in the United States, progress in medical care facilitated by technology has blurred the lines between rescue
and long-term suffering before death (e.g., Chapple, 2010; Colby, 2006; Shen, 1999). To put it plainly, prolonging life through care can often mean prolonging suffering before death.
Due to the availability of advanced medical technology and the general compulsion to use this technology at all times, individuals, families, and clinicians regularly face demanding plan-of-care decisions concerning when advanced technological treatments (such as CPR, mechanical ventilation, and supplying artificial nutrition and hydration) should be initiated or withheld, and if initiated, when treatments are no longer beneficial for the patient and should be stopped (e.g., Colby, 2006; Lynn, 2004). Concerns about overtreatment and undertreatment, along with anxieties about initiating and withdrawing treatment, can engender ethical dilemmas that can cause moral distress for patients, their advocates, and clinicians (e.g., Austin, 2012; Epstein & Delgado, 2010; Pauly, Varcoe, & Storch, 2012).
The Consumer Movement and Advent of Advance Directives
ADs came on the scene in the wake of the social movements of the 1960s and the developing consumer rights movement (Lamers, 2005; Wilkinson, 2011), along with several pivotal events focused specifically on death and dying. According to Lamers (2005), consumers became increasingly aware of their rights to disclosure and control over decision making in relation to a wide range of aspects of their lives. “The power of informed consumers began to have an impact on providers of services as well as on producers of goods” (Lamers, 2005, p. 107).
Dame Cicely Saunders founded St. Christopher's Hospice in the UK in 1967, and hospice came to the United States in 1971 with the establishment of Hospice Inc. in New Haven, Connecticut, and the opening of the first hospice home care service there in 1973 (Conner, 2009). The publication of Elizabeth Kübler-Ross's groundbreaking book On Death and Dying (1969) helped spark community initiatives to encourage people to talk with one another about death and dying. The popularity of Kübler-Ross's ideas and the new innovation of hospice care helped spark an explosion of conversations about death and dying, with public education programs taking place in church basements, service clubs, and other community venues throughout the country. Hospice volunteers were trained and family caregivers were educated about a new way of dealing with death—accepting, open, and out in public.
However, as is often the case when a social movement is “successful” and becomes institutionalized, the community conversations that had brought discussions of death to the grassroots faded in the 1980s as hospice programs became more established. Hospice became a benefit through the
Medicare program, and communities began to depend on hospice as the entity that “handled” death and dying.
The Legal Environment of Advance Care Planning
ADs are legal documents that meet requirements of federal and state laws, statutes, and regulations. This legal approach to documenting desires regarding one's future medical care emerged in 1969 when Luis Kutner, an Illinois attorney writing for a law journal, proposed the first living will that, by being modeled after an estate will, allowed individuals to express their health care desires should they lose their capacity to do so (Kutner, 1969). As the document was in the form of a “will” but conveyed instructions relevant to the person's life while they were still alive, it came to be known as the “living will.” Similar to the power of attorney that authorizes another person to handle financial and business matters, the power of attorney for health care authorizes a person to handle health care matters on another's behalf if he or she should become physically or mentally incapacitated and unable to speak for himself or herself.
Legal scholars have referred to this approach of modeling health care documents after legal documents as the legal-transactional approach to ADs and ACP (e.g., Castillo et al., 2011; Sabatino, 2010). This became the paradigm we have lived with for decades in the United States. Today, all 50 states have their own statutes and laws that speak to ADs, with approved documents or forms varying by state.
Legal documents were created in response to increasing sophistication and prevalence of medical technology and in response to highly publicized legal cases about withdrawing life support in cases of “persistent vegetative state” and “brain death” (e.g., Colby, 2006), legal cases in which the extension and withdrawal of life-support technology is a point of contention. Thus, in conjunction with technological developments, legal cases “exert a powerful influence on the provision of medical services to patients in endof-life (EOL) situations” (Kapp, Chapter 5, in this volume).
Ethical Foundations of Advance Care Planning
Initiatives around planning for EOL have been guided by the central principles of autonomy and self-determination (Holstein, Parks, & Waymack, 2011; Seymour & Horne, 2011; Wilkinson, 2011). The hospice philosophy was rooted in humanism (Conner, 2009), which holds that individuals have the right to pursue their individual potential and thus the right to determine how they will be treated by the medical establishment, including at EOL. The legal framework that has guided the framing of living wills and health care proxies has been founded on the principles of informed consent and the right to refuse treatment, either directly (when one is competent) or
indirectly (through a living will and/or a proxy decision maker) (Tiano & Beyer, 2005).
The first living will was developed in California in 1969, and in 1975 California gave living wills the force of law as it passed the Natural Death Act (Wilkinson, 2011). Other states followed in recognizing the living will, with Pennsylvania in 1983, the first to recognize a durable power of attorney for health care matters, giving the right to designate a surrogate or proxy to make health care decisions when one is no longer able to speak for oneself (Wilkinson, 2011).