Recognizing the potential hidden artistic contributions of persons with dementia opens new opportunities for interpretation and potential communication. This visual essay explores the authors’ responses to the fragile objects of art produced by a person with severe dementia and examines what may be learned from them.

Dementia is more than a disease. What dementia is, how it is understood, and how it is experienced is influenced by multiple factors including our societal preoccupation with individual identity. This essay introduces empirical and theoretical evidence of alternative ways of understanding dementia that act as a challenge to common assumptions. It proposes that dementia be understood as an experience of systems, particularly networks of people affected by the diagnosis. Taking this step reveals much about the dementia experience, and about (...) what can be learned from persons with dementia and their networks of family, friends, and carers. It also suggests that dementia may be best thought of as an ecology that arises from the interaction between neuropathological change, people, language, and meaning. While challenging, this perspective may provide new ways of responding to dementia and caring for those affected by it. (shrink)

While there is a great deal to agree with in the essay Expanded Terminal Sedation in End-of-Life Care there is, we think, a need to more fully appreciate the humanistic side of both palliative and end-of-life care.1 Not only does the underlying philosophy of palliative care arguably differ from that which guides curative medicine,2 dying patients are in a uniquely vulnerable position given our cultural disinclination towards open discussions of death and dying. In this brief response, we critically engage Gilbertson (...) et al ’s essay and seek to contextualise the perspective they put forward. According to Cassell, we should distinguish between pain and suffering.3 The former often gives rise to the latter, but suffering has other causes. This includes existential distress, indicating that, unlike pain, suffering is not simply physiological phenomena. Suffering involves the disintegration of the person, meaning that it can impact patient autonomy. Certainly, that a patient is suffering does not equate to a lack autonomy. Nevertheless, we should take care when making decisions in circumstance where the integrity of our embodied personhood is under threat, something that is clearly the case for those who are dying, particularly those who have refractory symptoms while doing so. Generally speaking, refractory symptoms are those which are intractable. They persist despite attempts at palliation. While this implies that such symptoms—and the suffering they cause—cannot be reversed this is not necessarily the case. Not only can the symptoms experienced by dying patients change …. (shrink)

Human connection is universally important, particularly in the context of serious illness and at the end of life. The presence of close family and friends has many benefits when death is close. Hospital visitation restrictions during the Coronavirus pandemic therefore warrant careful consideration to ensure equity, proportionality, and the minimization of harm. The Australian and New Zealand Society for Palliative Medicine COVID-19 Special Interest Group utilized the relevant ethical and public health principles, together with the existing disease outbreak literature and (...) evolving COVID-19 knowledge, to generate a practical framework of visiting restrictions for inpatients receiving palliative and end-of-life care. Expert advice from an Infectious Diseases physician ensured relevance to community transmission dynamics. Three graded levels of visitor restrictions for inpatient settings are proposed, defining an appropriate level of minimum access. These depend upon the level of community transmission of COVID-19, the demand on health services, the potential COVID-19 status of the patient and visitors, and the imminence of the patient’s death. This framework represents a cohesive, considered, proportionate, and ethically robust approach to improve equity and consistency for inpatients receiving palliative care during the COVID-19 pandemic and may serve as a template for future disease outbreaks. (shrink)

Among the far-reaching impacts of COVID-19 is its impact on care systems, the social and other systems that we rely in to maintain and provide care for those with “illness.” This paper will examine these impacts through a description of the influence on palliative care systems that have arisen within this pandemic. It will explore the impact on the meaning of care, how care is performed and identified, and the responses of palliative care systems to these challenges. It will also (...) highlight the current and potential future implications of these dynamics within the unfolding crisis of this pandemic. (shrink)

Learning from the profound challenge of dementia is an urgent priority. Success will require a critical deconstruction of current cultural and linguistic representations of this condition, and a kindling of novel and courageous approaches to re-conceptualise dementia's meaning and experience. This symposium collects provocative ideas arising from various discourses, theoretical perspectives, and methodolgical approaches to explore new ways to understand dementia.

The race against COVID-19 has been intense and painful and many of us are now looking for a way to move on. We may try to seize a degree of comfort and security by convincing ourselves that we are among the “fittest”—that is, among those who have managed to survive—who can now hope for a “new-normal” time, relatively unscathed. But this isn’t what we should be hoping for. Our world, and ourselves, will never be free of COVID-19 or its insidious (...) effects. COVID-19, like climate change, is a threat multiplier and the challenges it has raised are now indelibly engraved in our vulnerable, interconnected lives. Rather than vainly hoping for a return to an imaginary, erstwhile “normal” what we need is something more fundamental: a new version of hope that embraces a courage to learn what we need to do, to enable us to live a future to which we aspire. Perhaps counter-intuitively, we need to accept that the COVID-19 experience has already changed us deeply and hope that we can learn from this and from the future changes that the pandemic will give rise to. We need to radicalize our responses to the challenges, enabling ourselves to learn new lessons about old but increasingly pertinent topics, such as the realities of human fragility, and inter-connection. (shrink)