Decisions at the end of life: have we come of age?

Decision making is a complex process and it is particularly challenging to make decisions with, or for, patients who are near the end of their life. Some of those challenges will not be resolved - due to our human inability to foresee the future precisely and the human proclivity to change stated preferences when faced with reality. Other challenges of the decision-making process are manageable. This commentary offers a set of approaches which may lead to progress in this field

Should Research Ethics Encourage the Production of Cost-Effective Interventions?

This project considers whether and how research ethics can contribute to the provision of cost-effective medical interventions. Clinical research ethics represents an underexplored context for the promotion of cost-effectiveness. In particular, although scholars have recently argued that research on less-expensive, less-effective interventions can be ethical, there has been little or no discussion of whether ethical considerations justify curtailing research on more expensive, more effective interventions. Yet considering cost-effectiveness at the research stage can help ensure that scarce resources such as tissue samples or limited subject popula- tions are employed where they do the most good; can support parallel efforts by providers and insurers to promote cost-effectiveness; and can ensure that research has social value and benefits subjects. I discuss and rebut potential objections to the consideration of cost-effectiveness in research, including the difficulty of predicting effectiveness and cost at the research stage, concerns about limitations in cost-effectiveness analysis, and worries about overly limiting researchers’ freedom. I then consider the advantages and disadvantages of having certain participants in the research enterprise, including IRBs, advisory committees, sponsors, investigators, and subjects, consider cost-effectiveness. The project concludes by qualifiedly endorsing the consideration of cost-effectiveness at the research stage. While incorporating cost-effectiveness considerations into the ethical evaluation of human subjects research will not on its own ensure that the health care system realizes cost-effectiveness goals, doing so nonetheless represents an important part of a broader effort to control rising medical costs

Pruning the regulatory tree

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/62897/1/457534a.pd

The attitudes of brain cancer patients and their caregivers towards death and dying: a qualitative study

<p>Abstract</p> <p>Background</p> <p>Much money and energy has been spent on the study of the molecular biology of malignant brain tumours. However, little attention has been paid to the wishes of patients afflicted with these incurable tumours, and how this might influence treatment considerations.</p> <p>Methods</p> <p>We interviewed 29 individuals – 7 patients dying of a malignant brain tumor and 22 loved ones. One-on-one interviews were conducted according to a pre-designed interview guide. A combination of open-ended questions, as well as clinical scenarios was presented to participants in order to understand what is meaningful and valuable to them when determining treatment options and management approaches. The results were analyzed, coded, and interpreted using qualitative analytic techniques in order to arrive at several common overarching themes.</p> <p>Results</p> <p>Seven major themes were identified. In general, respondents were united in viewing brain cancer as unique amongst malignancies, due in large part to the premium placed on mental competence and cognitive functioning. Importantly, participants found their experiences, however difficult, led to the discovery of inner strength and resilience. Responses were usually framed within an interpersonal context, and participants were generally grateful for the opportunity to speak about their experiences. Attitudes towards religion, spirituality, and euthanasia were also probed.</p> <p>Conclusion</p> <p>Several important themes underlie the experiences of brain cancer patients and their caregivers. It is important to consider these when managing these patients and to respect not only their autonomy but also the complex interpersonal toll that a malignant diagnosis can have.</p

Higher Education; For Free, For Everyone, For Real? Massive Open Online Courses (MOOCs) and the Responsible University: History and Enacting Rationalities for MOOC Initiatives at Three Swedish Universities

Large-scale open education initiatives, commonly referred to as MOOCs (Massive Open Online Courses), may be said to offer universities a new form of public outreach, whereby universities can take an active role in educating society and provide affordable pathways to lifelong learning for all. In this chapter, we examine how MOOC initiatives resonate with the notion of the responsible university from the perspective of Swedish higher education. Based on an analysis of notions of intent expressed by three Swedish universities, we reason about the roles that MOOC initiatives may play. Further, we adapt a framework on how public organisations negotiate bounded realities in order to juxtapose discourses that reflect different rationales for the MOOC initiatives at three Swedish universities. As a result, we identify a number of affordances that MOOCs potentially provide, such as access to lifelong learning from higher education institutions to diversified and unprivileged groups, but also how the universities intend to utilise MOOC projects for internal capacity-building related to the digitalisation of education. Currently, potentially conflicting rationalities arise between strong norms of tuition-free, state-funded education and the developing business models of the MOOC platform providers that illustrate a challenge for the Nordic model

The characteristics of people who inject drugs in the United Kingdom: changes in age, duration, and incidence of injecting, 1980–2019, using evidence from repeated cross-sectional surveys

Abstract Background and aims Mortality and drug treatment data suggest that the median age of people who inject drugs is increasing. We aimed to describe changes in the characteristics of people injecting drugs in the United Kingdom (UK). Design Repeat cross-sectional surveys and modelling. Setting Low-threshold services in the United Kingdom such as needle and syringe programmes. Participants A total of 79 900 people who recently injected psychoactive drugs in the United Kingdom, recruited as part of the Unlinked Anonymous Monitoring Survey (England, Wales, Northern Ireland, 1990–2019) and Needle Exchange Surveillance Initiative (Scotland, 2008–2019). Measurements Age of people currently injecting, age at first injection, duration of injecting (each 1990–2019) and estimates of new people who started injecting (1980–2019). Findings In England, Wales and Northern Ireland between 1990 and 2019, the median age of people injecting increased from 27 (interquartile range [IQR], 24–31) to 40 (IQR, 34–46); median age at first injection increased from 22 (IQR, 19–25) to 33 (IQR, 28–39); and median years of injecting increased from 7 (IQR, 3–11) to 18 (IQR, 9–23). Values in Scotland and England were similar after 2008. The estimated number that started injecting annually in England increased from 5470 (95% prediction interval [PrI] 3120-6940) in 1980 to a peak of 10 270 (95% PrI, 8980-12 780) in 1998, and then decreased to 2420 (95% PrI, 1320-5580) in 2019. The number in Scotland followed a similar pattern, increasing from 1220 (95% PrI, 740–2430) in 1980 to a peak of 3080 (95% PrI, 2160–3350) in 1998, then decreased to a 270 (95% PrI, 130–600) in 2018. The timing of the peak differed between regions, with earlier peaks in London and the North West of England. Conclusions In the United Kingdom, large cohorts started injecting psychoactive drugs in the 1980s and 1990s and many still inject today. Relatively few people started in more recent years. This has led to changes in the population injecting drugs, including an older average age and longer injecting histories

Family members’ experiences of “wait and see” as a communication strategy in end-of-life decisions

The aim of this study is to examine family members’ experiences of end-of-life decision-making processes in Norwegian intensive care units (ICUs) to ascertain the degree to which they felt included in the decision-making process and whether they received necessary information. Were they asked about the patient’s preferences, and how did they view their role as family members in the decision-making process? A constructivist interpretive approach to the grounded theory method of qualitative research was employed with interviews of 27 bereaved family members of former ICU patients 3–12 months after the patient’s death. The core finding is that relatives want a more active role in end-of-life decision-making in order to communicate the patient’s wishes. However, many consider their role to be unclear, and few study participants experienced shared decision-making. The clinician’s expression “wait and see” hides and delays the communication of honest and clear information. When physicians finally address their decision, there is no time for family participation. Our results also indicate that nurses should be more involved in family–physician communication. Families are uncertain whether or how they can participate in the decision-making process. They need unambiguous communication and honest information to be able to take part in the decision-making process. We suggest that clinicians in Norwegian ICUs need more training in the knowledge and skills of effective communication with families of dying patients

Taking tissue seriously means taking communities seriously

<p>Abstract</p> <p>Background</p> <p>Health research is increasingly being conducted on a global scale, particularly in the developing world to address leading causes of morbidity and mortality. While research interest has increased, building scientific capacity in the developing world has not kept pace. This often leads to the export of human tissue (defined broadly) from the developing to the developed world for analysis. These practices raise a number of important ethical issues that require attention.</p> <p>Discussion</p> <p>In the developed world, there is great heterogeneity of regulatory practices regarding human tissues. In this paper, we outline the salient ethical issues raised by tissue exportation, review the current ethical guidelines and norms, review the literature on what is known empirically about perceptions and practices with respect to tissue exportation from the developing to the developed world, set out what needs to be known in terms of a research agenda, and outline what needs to be done immediately in terms of setting best practices. We argue that the current status of tissue exportation is ambiguous and requires clarification lest problems that have plagued the developed world occur in the context of global heath research with attendant worsening of inequities. Central to solutions to current ethical concerns entail moving beyond concern with individual level consent and embracing a robust interaction with communities engaged in research.</p> <p>Conclusion</p> <p>Greater attention to community engagement is required to understand the diverse issues associated with tissue exportation.</p