Exemplary post-discharge stroke rehabilitation programs: A multiple case study.

OBJECTIVE: The objective of this study was to identify essential aspects of exemplary post-discharge stroke rehabilitation as perceived by patients, care partners, rehabilitation providers, and administrators. DESIGN: We carried out an exploratory qualitative, multiple case study. Stroke network representatives from four regions of the province of Ontario, Canada each nominated one post-discharge rehabilitation program they felt was exemplary. SETTING: The programs included: a mixed home- and clinic-based service; a home-based service; a clinic-based service with a stroke community navigator and; an out-patient clinic-based service. PARTICIPANTS: Participants included 32 patients, 16 of their care partners, 23 providers, and 5 administrators. METHODS: We carried out semi-structured qualitative interviews with patients and care partners, focus groups with providers, and semi-structured interviews with administrators. Health records of patient participants were reviewed. Using an interpretivist-informed inductive content analysis, we developed overarching categories and subcategories first for each program and then across programs. RESULTS: Across four regions with differing types of programs, exemplary care was characterized by three essential components: stroke and stroke rehabilitation knowledge, relationship built through personalized respectful care, and a commitment to high quality, person-centered care. CONCLUSION: Exemplary post-discharge care included knowledge regarding identification and treatment of stroke-related impairment, that is, information found in best practice guidelines. However, expertise related to building relationship through providing personalized respectful care, within a mutually supportive, improvement-oriented team was also essential. Additionally, administrators played a crucial role in ensuring continued ability to deliver exemplary care.

The importance of developing care-worker-centered robotic aides in long-term care.

Recent research points to the fact that new medical technological innovations are just as relevant in the context of long-term care or chronic care as they are in the context of acute care. In the spirit of the Nuffield Foundation recommendations, this paper explores the possibilities of using robotic aides in long-term care and identifies the tensions that must be considered and addressed if robotics is to be introduced successfully in nursing homes. Our examination is two-pronged. First, we delve into a fundamental issue surrounding AI, namely that of consciousness. We argue that automation will always have only a limited use in caregiving since caregiving as an activity requires the use of human-type, that is, organic, consciousness. We support the thesis that the emergence and formation of human-type consciousness require feelings such as empathy and the sense of touch, which, in turn, create the sense of kinship with fellow human beings. And second, we examine the benefits as well as risks of using robotic aides such as ZORA and PARO in long-term care facilities. More specifically, we look at ZORA's use in a group setting, and PARO's use in an individual setting. We emphasize that long-term care is one-on-one care, including but not limited to intimate care. Crucially, we argue that touch is at the heart of this type of care. We argue that some of the tensions with the use of robotic aides are generated precisely because of the lack of human touch.

Aging and the prudential lifespan account.

As individuals grow older, they usually require assistance with the daily tasks of self-care. This type of assistance, ancillary care, is essential to maintaining the health of those who need these services. In his prudential lifespan account, Norman Daniels includes access to such services making his account an attractive proposal given the current demographic shift. In this paper, I examine the prudential lifespan account through the lens of old age and I focus on the two concepts on which the lifespan account relies. I show that these two concepts, normal species functioning and opportunity cannot buttress Daniels's lifespan account; at least it cannot do so for older persons. The tensions that I identify in the prudential lifespan account in relation to aging are instructive for the more recent proposals to include aging in a theory of health and health justice. In addition, my analysis allows me to demonstrate that Daniels's view of opportunity is irreconcilable to capabilities, the latter being more adaptable to the realities of aging. If capabilities appear more promising, it is nonetheless imperative that the specificities of extended care, such as the need for unpaid caregiving, be taken into consideration.

The implications of the Canadian Stroke Best Practice Recommendations for design and allocation of rehabilitation after hospital discharge: a problematization.

Introduction: Implementation of the Canadian Stroke Best Practice Recommendations has improved inpatient rehabilitation. As attention is turned to the design and allocation of rehabilitation after hospitalization, examination of their implications for post-discharge rehabilitation could help optimize service planningMethods: Critical discourse analysis modeled on Alvesson and Sandberg's method of problematization was conducted to determine how the Canadian Stroke Best Practice Recommendations envision and shape post-discharge rehabilitation, and identify any tensions and potential ways to resolve them.Results: Within the Canadian Stroke Best Practice Recommendations post-discharge rehabilitation is implicitly viewed as a continuation of inpatient rehabilitation. Rehabilitation is largely envisioned as a set of biomedical procedures aimed at normalization through correction of impairment. There is potential tension between this implicit goal and the explicit goal of providing patient and family-centered care and promoting reengagement in valued activities and roles.Conclusion: An alternate vision of post-discharge rehabilitation could help resolve this tension. Post-discharge rehabilitation could be envisioned as a self-management intervention. Rather than primarily an expert-driven process of measuring impairment and applying procedures aimed at normalization, rehabilitation would be considered facilitation of self-management with the goal of reengaging in forms of participation that comprise a satisfying life.Implications for RehabilitationImplicit assumptions within best practice guidelines powerfully influence recommendations. These ideas are difficult to examine because they seem self-evident.Implicit assumptions in the Canadian Stroke Best Practice Guidelines envision post-discharge stroke rehabilitation as an expert-driven, impairment-focused biomedical procedure.This biomedical image makes it difficult to provide care that meets the guideline's explicit goals of client- and family-centeredness.Reimagining post-discharge stroke rehabilitation as a chronic self-care management intervention aimed at developing a satisfying life after stroke could improve patient care.

No Longer Home Alone? Home Care and the Canada Health Act.

In this paper, I argue that addressing the medical needs of older persons warrants expanding the array of insured services as described by the Canada Health Act (CHA) to include home care. The growing importance of chronic care supports my call for federally regulated home care services as the nature of disease management has changed significantly in the last decades. In addition, if the values of equity, fairness and solidarity, which are the keystone values of the CHA, are to be upheld within the current social and demographic context, then Canada's health care system should adapt accordingly. I focus my argument on the services provided to older persons for two main reasons. First, the changing nature of disease management is best seen in this population. If it is to be successfully argued that the transformations in medicine warrant an expansion of insured services covered by the CHA, it will be best illustrated by looking at the needs of older persons. Second, with the demographic shift looming large in the policy agenda, an exploration of this issue is not only crucial but timely.

Seniors, risk and rehabilitation: broadening our thinking.

PURPOSE: Conceptualizations of risk in seniors' rehabilitation emphasize potential physical injury, functional independence and cost containment, shifting rehabilitation from other considerations essential to promoting a satisfying life. In a two-day multidisciplinary planning meeting we critically examined and discussed alternatives to dominant conceptualizations. METHOD: Invitees reflected on conceptualizations of risk in stroke rehabilitation and low vision rehabilitation, identified and explored positive and negative implications and generated alternative perspectives to support rehabilitation approaches related to living a good life. RESULTS: Current risk conceptualizations help focus rehabilitation teamwork and make this work publically recognizable and valued. However, they also lead to practice that is depersonalized, decontextualized and restrictive. Further research and practice development initiatives should include the voices of clinicians and seniors to more adequately support meaningfully living, and foster safe spaces for seniors and clinicians to speak candidly, comprehensively and respectfully about risk. To ensure that seniors' rehabilitation targets a satisfying life as defined by seniors, increased focus on the environment and more explicit examination of how cost containment concerns are driving services is also necessary. CONCLUSION: This work reinforced current concerns about conceptualizations of risk in seniors' rehabilitation and generated ways forward that re-focus rehabilitation more on promoting a satisfying life. Implications for rehabilitation In seniors' rehabilitation, considerations of risk focus on physical injury, functional dependence and cost containment. Focus on provider-defined risk of physical injury limits examination of patient goals and patients' histories of judging and dealing with risk. Focus on functional dependence and cost containment may lead to practice that is depersonalized and decontextualized. Abandonment of ableist and ageist thinking and an explicit focus on person-centered definitions of risk and a satisfying life are recommended.

The ethics of imperfect cures: models of service delivery and patient vulnerability.

A rising number of patients require continuing or palliative services and this means that they will need to transition from one model of healthcare delivery to another. If it is generally recognised that patient vulnerability to inadequate services increases when the setting in which patient receives care changes, it is usually taken to be the result of poor coordination of services or personnel. Recognising that an integrated system is essential to adequate access, the point that I put forward in this paper is that the centrality of acute care services affects the way in which chronic and palliative services are structured and, consequently, their availability. I argue that the problem originates in the manner in which some of the foundational concepts of the acute care model are imported into the other models of care delivery. In order to make this case, I review the three main models of healthcare service delivery by focusing my analysis along three axes: the goal of the care model; the predominant understanding of autonomy implicit in the model; and, the main actors in the care relationship. By examining how the various concepts translate from one model to the next, I discuss what I identify to be one of the main conceptual obstacles to less problematic transitioning, the notion of autonomy and the corresponding view of the patient as an isolated agent.

Taking bioethics personally.

This narrative symposium examines the relationship of bioethics practice to personal experiences of illness. A call for stories was developed by Tod Chambers, the symposium editor, and editorial staff and was sent to several commonly used bioethics listservs and posted on the Narrative Inquiry in Bioethics website. The call asked authors to relate a personal story of being ill or caring for a person who is ill, and to describe how this affected how they think about bioethical questions and the practice of medicine. Eighteen individuals were invited to submit full stories based on review of their proposals. Twelve stories are published in this symposium, and six supplemental stories are published online only through Project MUSE. Authors explore themes of vulnerability, suffering, communication, voluntariness, cultural barriers, and flaws in local healthcare systems through stories about their own illnesses or about caring for children, partners, parents and grandparents. Commentary articles by Arthur Frank, Bradley Lewis, and Carol Taylor follow the collection of personal narratives.

Assembly-line care: ancillary care work in post-Fordist economies.

OBJECTIVES: In the United States, health care aid is one of the fastest growing jobs. This trend is observed in many other Western countries experiencing increased demands for home and facility-based long-term care. However, the recruitment and retention of workers is difficult. The goal of this research is to provide a sound conceptual analysis of paid ancillary care as a better understanding of this type of labour can help improve the delivery and quality of services as well as the retention of workers. METHODS: The activities of paid ancillary care are analysed using Marx's analysis of labour and Habermas's distinction of action types. Studies on care workers as well as the manner in which the provision of care is structured by agencies are examined in order to highlight how care work is perceived. CONCLUSIONS: Although care labour is situated in a post-Fordist economy, it is, nonetheless organised as assembly-line work reminiscent of Fordist labour. This is in part a consequence of the reduction of care to a commodity. The commodification of care erases the relational component intrinsic to adequate caring. It is suggested that care labour should be structured to support the complex activities that comprise this type of labour.

Where angels fear to tread: proxy consent and novel technologies.

BACKGROUND: Individuals suffering from severe disorders of consciousness (DOC) face a bleak prognosis and are susceptible to therapeutic neglect according to Fins. Because of the increasing occurrence of severe brain injury, some physicians and researchers take the study of DOC to be a moral imperative and perceive novel technologies, such as Deep Brain Stimulation (DBS), as offering potential therapeutic benefit. METHOD: This article examines the decisional process faced by proxy decision-makers for patients with severe DOC when confronted by novel treatments such as DBS. RESULTS: If there is awareness in the literature that surrogate consent is complicated by the contingencies of severe brain injury such as disability and the possibility of long-term care, surrogate consent is often equated with substituted judgement and taking the best interests of the patient into account. However, for surrogates of patients with severe DOC, advocacy becomes a central component of the surrogate's role as there is no established standard of care for these patients in the post-acute phase. If participation in research is offered, the surrogate may perceive research participation as a way of providing benefits such as stimulation and some rehabilitation services for the patient. CONCLUSION: Researchers need to be aware how the absence of a standard of care can shape surrogate choice.

Palliative care and Parkinson's disease: managing the chronic-palliative interface.

The increasing numbers of individuals needing palliative services and changing the nature of these services bring about new challenges for the delivery and accessibility of timely and appropriate palliative care services. Socioeconomic factors are known to affect access but disease type is a factor which can negatively impact the availability of adequate palliative services. The purpose of this article is to examine the barriers to palliation for chronic illnesses that span long periods of time. My analysis centers on palliation for Parkinson's disease because it illustrates the difficulties of managing the chronic-palliative interface, and it also demonstrates how care is situated in an evolving network of professional and non-professional actors. I argue that insuring the availability of adequate palliative services entails negotiating the chronic-palliative interface, which, in turn, requires continued multi-disciplinary professional involvement as well as the integration and recognition of the care provided by family caregivers.

Race, science and a novel: an interdisciplinary dialogue.

In the novel Racists by Kunal Basu (2006), two competing scientists initiate an experiment that they believe will prove which race is superior. The research subjects, one white and one black infant, are sequestered on an isolated island in the care of a mute nurse. The contest must be waged in a 'natural laboratory' with no artificial interventions and with the prospect that one will die at the hands of the other. The politics of empire, the slave trade and the advent of a new scientific way of viewing life, Darwinism, set the stage for the fictional experiment, but the ramifications of such thinking extend into the present. Coming from the disciplines of nursing, philosophy and science, we discuss how a novel can illuminate the moral dimensions of science and healthcare. The critical distance afforded by the novel provides a rich terrain for the examination of issues such as race, care and the purity of science. Despite the recent dominance of social explanations of race, science requires the examination of the differences between human beings at the biological level. The view that biology is destiny is a powerful one with dangerous consequences, especially since the belief that certain human beings' destinies are far worthier than others is a corollary of such a view. In this paper, we present the cross-disciplinary conversation, which has been facilitated by this novel. We hope this will inform ethics educators of the rich potential of using fiction as a pedagogical tool.