Aid‐in‐dying laws in the United States have two important restrictions. First, only patients who are terminally ill, defined as having a prognosis of six months or less to live, qualify. Second, at the time the patients take the lethal medication, they must be competent to make medical decisions. This means that an advance directive requesting aid in dying for a later time when the patient lacks decision‐making capacity would be invalid. However, many people are more concerned about avoiding living into (...) severe dementia for years—a time when they will lack decision‐making capacity—than they are about preventing suffering or the loss of dignity or autonomy for a few months at the end of life.Gillian Bennett is an example of someone determined not to live into severe dementia. She opted for preemptive suicide in 2014, explaining why in a letter she posted online: “Every day I lose bits of myself, and it’s obvious that I am heading toward the state that all dementia patients eventually get to: not knowing who I am and requiring full‐time care.”A major problem with Bennett’s solution, however, is that the individual is likely thereby to be giving up some “good time.” A legal alternative to preemptive suicide is to create an advance directive stating the circumstances under which one wants not to receive any lifesaving or life‐sustaining treatment, even the most basic and noninvasive. This option is our focus in this paper: how to create effective advance directives to avoid living into severe dementia. To be relevant to progressive dementia, the directive would need to state what kinds of care should be withheld and when. At the same time, advance directives for severe dementia face serious challenges. Before addressing these, we review the normative force of directives themselves. (shrink)

In this issue of American Journal of Bioethics, Childress et al. address one of the most challenging modern clinical ethical dilemmas: the awake, competent patient dependent on extracorporeal membr...

Since the Supreme Court of New Jersey decided the Quinlan case a quarter of a century ago, three American Supreme Court decisions and a host of state appellate decisions have addressed end-of-life issues. These decisions, as well as legislation addressing the same issues, have prompted a torrent of law journal articles analyzing every aspect of end-of-life law. In recent years, moreover, a number of law review articles, many published in this journal, have also specifically addressed legal issues raised by palliative (...) care. Much less is known in the United States, however, as to how other countries address these issues. Reflection on the experience and analysis of other nations may give Americans a better understanding of their own experience, as well as suggest improvements to their present way of dealing with the difficult problems in this area.This article offers a conceptual and comparative analysis of major legal issues relating to end-of-life treatment and to the treatment of pain in a number of countries. In particular, it focuses on the law of Australia, Canada, the United Kingdom, Poland, France, the Netherlands, Germany, and Japan. (shrink)

Since the Supreme Court of New Jersey decided the Quinlan case a quarter of a century ago, three American Supreme Court decisions and a host of state appellate decisions have addressed end-of-life issues. These decisions, as well as legislation addressing the same issues, have prompted a torrent of law journal articles analyzing every aspect of end-of-life law. In recent years, moreover, a number of law review articles, many published in this journal, have also specifically addressed legal issues raised by palliative (...) care. Much less is known in the United States, however, as to how other countries address these issues. Reflection on the experience and analysis of other nations may give Americans a better understanding of their own experience, as well as suggest improvements to their present way of dealing with the difficult problems in this area.This article offers a conceptual and comparative analysis of major legal issues relating to end-of-life treatment and to the treatment of pain in a number of countries. In particular, it focuses on the law of Australia, Canada, the United Kingdom, Poland, France, the Netherlands, Germany, and Japan. (shrink)

The current ethical-legal consensus — prohibiting assisted suicide and euthanasia, but (1) allowing patients to forgo all life-saving treatment, and (2) permitting pain relief that increases the risk of death — is a means of having it both ways. This is how we often make “tragic choices.”.

I sometimes wonder whether some proponents of physician-assisted suicide or physician-assisted death think they own the copyright to such catchy phrases as “death with dignity” and “a good death” so that if you are against PAS or PAD, thenyou must be againsta dignified death or a good death. If one removes the quotation marks around phrases like “aid-in-dying” or “compassionate care for the dying,” I am not opposed to such end-of-life care either. Indeed, how couldanybodybe against this type of care?I (...) do not want to abandon dying patients anymore than Dr. Timothy Quill does. Although, unfortunately, it will not always be easy to achieve the desired result, I agree with him that it ought to be a goal of medicine “to help people die well, to help them receive a good death” — or at least “the best possible” death under the circumstances. I part company with Professor Quill, however, when he urges us to change the law in the majority of our states so that in some circumstances patients may achieve a “good death” or a “dignified” one by means of lethal drugs. (shrink)

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 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 or whether or not to utilize particular interventions, 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 and physicians 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. (shrink)