Previous studies have documented the fallibility of attempts by surrogates and physicians to act in a substituted judgment capacity and predict end-of-life treatment decisions on behalf of patients. We previously reported that physicians misperceive their patients' preferences and substitute their own preferences for those of their patients with respect to four treatments: cardiopulmonary resuscitation in the event of cardiac arrest, ventilator for an indefinite period of time, medical nutrition and hydration for an indefinite period of time, and hospitalization in the (...) event of pneumonia. (shrink)

Background and objective: Code status discussions may fail to address patients’ treatment-related goals and their knowledge of cardiopulmonary resuscitation (CPR). This study aimed to investigate patients’ resuscitation preferences, knowledge of CPR and goals of care. Design, setting, patients and measurements: 135 adults were interviewed within 48 h of admission to a general medical service in an academic medical centre, querying code status preferences, knowledge about CPR and its outcome probabilities and goals of care. Medical records were reviewed for clinical information (...) and code status documentation. Results: 41 (30.4%) patients had discussed CPR with their doctor, 116 (85.9%) patients preferred full code status and 11 (8.1%) patients expressed code status preferences different from the code status documented in their medical record. When queried about seven possible goals of care, patients affirmed an average of 4.9 goals; their single most important goals were broadly distributed, ranging from being cured (n = 36; 26.7%) to being comfortable (n = 8; 5.9%). Patients’ mean estimate of survival to discharge after CPR was 60.4%. Most patients believed it was helpful to discuss goals of care (n = 95; 70.4%) and the chances of surviving inhospital CPR (n = 112; 83.0%). Some patients expressed a desire to change their code status after receiving information about survival following inhospital CPR (n = 11; 8.1%) or after discussing goals of care (n = 2; 1.5%). Conclusions: Doctors need to address patients’ knowledge about CPR and take steps to avoid discrepancies between treatment orders and patients’ preferences. Addressing CPR outcome probabilities and goals of care during code status discussions may improve patients’ knowledge and influence their preferences. (shrink)

Decision making for incompetent patients is a much-discussed topic in bioethics. According to one influential decision making standard, the substituted judgment standard, a surrogate decision maker ought to make the decision that the incompetent patient would have made, had he or she been competent. Empirical research has been conducted in order to find out whether surrogate decision makers are sufficiently good at doing their job, as this is defined by the substituted judgment standard. This research investigates to what extent surrogates (...) are able to predict what the patient would have preferred in the relevant circumstances. In this paper we address a methodological shortcoming evident in a significant number of studies. The mistake consists in categorizing responses that only express uncertainty as predictions that the patient would be positive to treatment, on the grounds that the clinical default is to provide treatment unless it is refused. We argue that this practice is based on confusion and that it risks damaging the research on surrogate accuracy. (shrink)

The word dignity is frequently used both in clinical and philosophical discourse when referring to and describing the ideal conditions of the patient's treatment, particularly the dying patient. An exploration of the variety of meanings associated with the word dignity will note dignity's ambiguous usage and reveal instrumental concepts needed to better understand the discourse of the dying. When applied to a critique of recent and contemporary criticisms of the medical community's handling of the dying, such concepts might provide a (...) more coherent notion of dignity. Rather than a separate construct, a death with dignity might be viewed as an interactive process among the dying and their caretakers. Together, this interdependent amalgam engages in humanizing communication aimed toward understanding the final needs and wants of the patient. (shrink)

Most elderly patients die with an order in place that they not be given cardiopulmonary resuscitation . Surveys have shown that many elderly in different parts of the world want to be resuscitated, but may lack knowledge about the specifics of cardiopulmonary resuscitation . Data from countries other than the US is limited, but differences in physician and patient opinions by nationality regarding CPR do exist. Physicians’ own preferences for CPR may predominate in the DNR decision making process for their (...) patients, and many physicians may not want the participation of the elderly or believe that it is necessary. More complete and earlier discussions of a wider range of options of care for patients at the end of life have been advocated. The process ought to include education for patients about the process and efficacy of CPR, and for physicians on how to consider the values and levels of knowledge of their patients, whose preferences may differ from their own. (shrink)

In end-of-life care discussions, I contend that the distinction between “having a life” vs. “being alive” is an underutilized distinction. This distinction is significant in separating different states of existence conflated by patients, families, and clinicians. In the clinical setting, applying this distinction in end-of-life care discussions aids patients’ and family members’ decision-making by helping them understand that being alive can differ from having a life. Moreover, this distinction helps them decide which state may be the most important to them. (...) After applying this distinction to three complex cases, I respond to the likely objection that “having a life” vs. “being alive” is less accurate and more controversial than other distinctions. I conclude by arguing that “having a life” vs. “being alive” is more accurate and less controversial than distinctions between medically indicated vs. medically inappropriate treatments, personhood, and quantity vs. quality of life. (shrink)

Nurses are increasingly faced with situations in practice regarding the prolongation of life and withdrawal of treatment. They play a central role in the care of dying people, yet they may find themselves disempowered by medical paternalism or ill-equipped in the decision-making process in end-of-life situations. This article is concerned with the ethical relationships between patient autonomy and medical paternalism in end-of-life care for an advanced cancer patient. The nurse’s role as the patient’s advocate is explored, as are the differences (...) between nursing and medicine when confronted with the notion of patient autonomy. The impetus for this discussion stems from a clinical encounter described in the following scenario. (shrink)

Patients who are incompetent need a surrogate decision maker to make treatment decisons on their behalf. One of the main ethical questions that arise in this context is what standard ought to govern such decision making. According to the Substituted Judgment Standard, a surrogate ought to make the decision that the patient would have made, had he or she been competent. Although this standard has sometimes been criticized on the grounds of being difficult to apply, it has found wide appeal, (...) since it it is alleged to protect incompetent patients? right to autonomy. The main purpose of the thesis is to evaluate SJS, from a conceptual and ethical perspective. It argues that the traditional formulation of SJS is seriously incomplete, and discusses alternative ways of completing it. Moreover, it questions the received view on how SJS should be morally justified, by offering arguments against the view that decision making in accordance with this standard extends the patient's opportunities for self-determination. Instead it suggests a virtue-ethical approach according to which the moral point of SJS-based decision making is not to protect the patient's interests, but to express respect for person. The thesis also critically assesses empirical studies according to which surrogates often fail to correctly predict patients? actual treatment preferences. It is shown that such results cannot, for a number of reasons, support the conclusion drawn that surrogates are ill-equipped to make decisions that comply with SJS. (shrink)

Many individuals with chronic or degenerative diseases in Canada are in receipt of long-term artificial nutrition and hydration. Once an individual has been transferred to a chronic care facility, is the feeding tube viewed as a medical treatment, and subject to the same evaluations and discussions as other medical treatments, or does the feeding tube become an unquestioned permanent part of the life of the resident? How do clinicians who care for these residents view the ethical issues involved in long-term (...) tube feeding? (shrink)