The term “living will” (or advance directives, as they are known in Canada) has been used by the public to refer to a variety of legal documents that take effect when a person becomes mentally incapable of making her or his own health and personal care decisions. A person can provide her or his wishes in instructions or choose an appointee (proxy) to make the decisions. Living Will, Living Well draws upon Godkin’s interviews, with older people who have drawn up an advance directive, to help both the general public and service providers better understand these important legal documents.
In this book, the author reviews the literature, summarizes her own qualitative research, and highlights key issues around advance directives. The reader follows the experiences of “Alice”, a fictional older woman, as she considers and then plans her own advance directive. Alice is an amalgam of 15 research subjects. Using italicized typeface as a stylistic technique to highlight Alice’s personal observations, the author artfully incorporates Alice’s thought processes into conversations with her peers and family over an eight-month period to highlight common fears, concerns, and issues related to dying and the use of living wills, making this a very thoughtful approach. Readers can follow that story separately, and it is an interesting way to first read the book.
In Living Will, Living Well, the author has undertaken a challenging task: to describe the complex topic of “living wills” in a generalized way. Each Canadian jurisdiction, for instance, uses different language for these documents and has different laws in this area (e.g., advance directives are called personal directives in Alberta, where the original research was undertaken). The author skillfully highlights the strengths of advance directives and helps the audience to see the development of preparing the directive as a personal journey, not merely reaching a destination (i.e., having a signed document). Perhaps the book’s greatest strength is that it promotes the directives as a means of promoting communication within families about future decisions that they may need to make on behalf of a mother, father, or other relative if that person becomes mentally incapable. It is also very encouraging to see that this book clarifies a number of common misconceptions.
Potential drawbacks of the book fall into three categories: interpretations, generalizations, and omissions. Some of the illustrations used in the book might leave the reader with erroneous impressions. For example, a person who has had a stroke may have lost the ability to communicate, but that is not the same as loss of his or her mental capacity. Elsewhere in the book, colloquial language such as “tell doctors to pull the plug” (p. 34) is medically inaccurate.
Given that the book is intended to promote the use of advance directives, it is not surprising that it tends to overlook or downplay some issues such as health care providers’ lack of understanding (Mirarchi, Kalantzis, Hunter, McCracken, & Kisiel, Reference Mirarchi, Kalantzis, Hunter, McCracken and Kisiel2009) and misuse (Meadus, Wahl, & Rosenbaum, Reference Meadus, Wahl and Rosenbaum2007) of advance directives. There has also been a less than altruistic push at a policy level in several Canadian and American jurisdictions to encourage the use of advance directives among older adults as a means to reduce health care costs (Alberta Heritage Foundation for Medical Research, 2005). In a health care system that is sometimes ageist, advance directives may be advocated to “correct” for “expensive and futile care” that older adults are incorrectly perceived as receiving (Spencer, Reference Spencer2009).
Several important matters are not addressed which a reader might expect to be covered in a book of this nature. For example, there is no mention of the fact that people can regain mental capacity in some situations (thus mental incapacity is not always a permanent status), and there is no mention of various areas or degrees of capacity. The duties of the health care proxy are not discussed, and there is little if any mention of the continued importance of involving the person who made a directive in care discussions even after she or he is deemed “incapable”.
Writing is an art of persuasion. Consequently, one might also ask whether the particular images of death that the author has chosen are fair (such as pain and tubes; the overly graphic or dramatic description of resuscitation and DNR orders; a daughter coming from out of the province or country trying to have treatment “forced” on the parent). These certainly capture the reader’s attention, but they may also reduce important issues such as family concerns to caricatures. The examples used also reinforce the use of advance directives as only part of the dying process, not their equally important use for supporting the wishes of mentally incapable people in their day-to-day care and support (“living well”).
The author’s – and Alice’s – comments suggest an underlying distrust of lawyers to aid preparation of advance directives (pp. 19 and 109). This seems a bit contradictory in that Alice first learns about the directives from a presentation given by a lawyer. As these legal documents have very important implications for the person who may later become mentally incapable, individuals will need clarity of instructions and be able to anticipate various contingencies that might not otherwise be immediately obvious. In a mobile society, the advance directive will need to be set up so that if necessary, it can be legally accepted in another jurisdiction. Also in rapidly changing areas such as health care, laws can (and do) change.
One of the primary challenges of writing a book of this nature is that specific legal information can become out of date quickly. In 2007 while the book was in development, Alberta amended parts of its personal directives law and regulations following public consultations. As a result, some information and issues presented by the author are no longer relevant in that jurisdiction. For example, one can no longer name someone as agent in Alberta for a personal directive without their express permission. Moreover, Alberta now has a registry system for the directives, although most other jurisdictions do not. The registry is optional but health care providers will know if one has a personal directive. If the individual has named someone to speak on their behalf in case of a medical emergency, the registrar can inform health care providers how to get in touch with the agent.
Ultimately, this book is a worthy effort to present complex information as clearly as possible and in an engaging manner. The book will help inform many readers, if it is understood as highlighting the process and issues around advance directives as opposed to being a comprehensive statement of the law. It is nonetheless always wise to consult a lawyer or legal professional when planning to draft an advance directive.
