Resilience From a Stakeholder Perspective: The Role of Next of Kin in Cancer Care.

OBJECTIVE: The aim of this article was to provide new knowledge on how next of kin are co-creators of resilient performance, as seen from the viewpoint of the healthcare personnel and managers. The following research question guided the study: How are next of kin involved in shaping resilience within cancer care in hospitals? METHODS: The design of the study is a case study of cancer departments in two Norwegian hospitals. Data collection included a total of 32 qualitative semistructured interviews at two organizational levels (managers and staff). The data were analyzed by ways of a directed content analysis according to Hollnagel's Resilience in Health Care framework of resilience potentials (anticipate, monitor, respond, learn). RESULTS: Next of kin are involved in creating and maintaining resilience in cancer care by different kind of activities and in-depth insight into the patient's condition, which strengthen all resilience potentials of responding, anticipation, monitoring, and learning. We have identified nine areas in which next of kin are co-creators in shaping resilience. Next of kin are important stakeholders, both as safety experts and as safety resources, helping healthcare professionals provide quality and safety in the patient care process under difficult conditions. Next of kin's knowledge of the patient's history, their observation of the patient over time within the hospital, at home, and across care transitions are key elements of their contribution. CONCLUSIONS: Next of kin complement healthcare professionals in all four potentials for resilient performance. The study suggests that the Resilience in Health Care framework takes into account the role of next of kin, as a stakeholder potential, because this has not previously been sufficiently considered.

Ethical, Palliative, and Policy Considerations in Disorders of Consciousness.

This essay complements the scientific and practice scope of the American Academy of Neurology Guideline on Disorders of Consciousness by providing a discussion of the ethical, palliative, and policy aspects of the management of this group of patients. We endorse the renaming of "permanent" vegetative state to "chronic" vegetative state given the increased frequency of reports of late improvements but suggest that further refinement of this class of patients is necessary to distinguish late recoveries from patients who were misdiagnosed or in cognitive-motor dissociation. Additional nosologic clarity and prognostic refinement is necessary to preclude overestimation of low probability events. We argue that the new descriptor "unaware wakefulness syndrome" is no clearer than "vegetative state" in expressing the mismatch between apparent behavioral unawareness when patients have covert consciousness or cognitive motor dissociation. We advocate routine universal pain precautions as an important element of neuropalliative care for these patients given the risk of covert consciousness. In medical decision-making, we endorse the use of advance directives and the importance of clear and understandable communication with surrogates. We show the value of incorporating a learning health care system so as to promote therapeutic innovation. We support the Guideline's high standard for rehabilitation for these patients but note that those systems of care are neither widely available nor affordable. Finally, we applaud the Guideline authors for this outstanding exemplar of engaged scholarship in the service of a frequently neglected group of brain-injured patients.

Contribuição da Prótese Bucomaxilofacial na internacionalização da Odontologia / Contribution of Maxillofacial Prosthetics for the dentistry internationalization

Objetivos: Este artigo visa exemplificar uma parceria internacional técnico cientifica por meio da utilização de técnica idealizada e patenteada por pesquisadores brasileiros. Materiais e Métodos: Um grupo de pesquisadores brasileiros idealizou, pesquisou e patenteou uma técnica de obtenção e utilização de íris digitalizada na reabilitação protética ocular. A internacionalização do método foi decorrente do intercâmbio estabelecido entre professores do Brasil e do México.A permanência do pesquisador mexicano, por um período em que especializou e concluiu o curso de mestrado, junto aos colegas brasileiros, pôde oferecer conhecimento e treinamento na aplicação da técnica proposta. Resultados: São apresentados casos clínicos em que a reabilitação protética ocular foi realizada usando a técnica brasileira de íris digitalizada. Conclusão:Pesquisas brasileiras, principalmente na área da saúde, vêm tendo destaque internacional. A preocupação com a melhora da qualidade de vida torna relevantes nossos estudos e técnica sem âmbito mundial.

Objectives: This article aims to illustrate a scientific technical international relation ship through the use of technique created and patented by Brazilian researchers. Materials and Methods: A group of Brazilian researchers devised, researched and patented a technique of obtaining and using scanned iris in ocular prosthetic rehabilitation. The internationalization of the technique was due to technical and scientific partner ship between Brazilian and Mexican researchers. A Mexican researcher remained for a period in which he specialized and completed his master’s course with the Brazilian team that was able to transfer knowledge and offer atraining in the application of the technique. Results: Three cases are shown, two Brazilian an done Mexican. Ocular Prosthetic rehabilitation of these cases was performed using the Brazilian technique of scanned iris. Conclusion: Brazilian research, especially in health, comes with international relevance. The concern with improving life quality makes our technical studies relevant world wide.

[Helping as a matter of expedience? Ethical objections against prioritization in medicine]. / Helfen nach Berechnung? Ethische Einwände gegen die Priorisierung in der Medizin.

The paper discusses the question whether it could be ethically appropriate to "resolve" the problem of scarce resources in health care via priority lists. It is argued that such a schematical priority list could only be undisputed in ethical respects if it represented a broad consensus on the question what a good life would be. Priority lists are always implicit decisions about specific concepts of the good life. Using a priority list only in consideration of a mere cost-benefit ratio means to accept a mere utilitarian way of defining good life. Such a definition goes with neglect of the interests of people with chronic diseases, of patients with incurable diseases, of patients with a limited life expectancy. To neglect the interests of these patients means to abandon the core of medical identity, because medicine has the mission to help those above all who are most in need and those who cannot help themselves. And so we have to realize that for medicine there are some values which are more important than economic considerations. The physician is a person who gives a promise, the promise to be there for the patient. If the physician now is becoming a businessman, this promise is no longer valid. The businessman doesn't give any other promise than not to act against the contract. But the main need of the patient, his longing for a human person whom he can trust, cannot become part of a contract. Especially in our time medicine has to fight for the core of its identity.

[Physical medicine and rehabilitation and oncology: ethical reflexion]. / Médecine physique et de réadaptation et cancérologie: réflexion éthique à partir de cas cliniques.

INTRODUCTION: Physical medicine and rehabilitation (PMR) can involve the care of cancer patients requiring rehabilitation for associated deficiencies. In this case, rehabilitation methods may differ due to the evolutive nature of the disease. OBJECTIVE: To reflect on this aspect of PMR based on real cases. METHOD: Cases study of patients hospitalised in the PMR unit for neurological rehabilitation and diagnosed with cancer. RESULTS: Twenty-four recorded cases (1998-2006); four cases are described because of difficult problems; in only seven cases the coexisting cancer had no impact on the rehabilitation process. DISCUSSION AND CONCLUSION: Supportive care for patients with a bad vital prognosis differs from standard rehabilitation and raises therapeutic and relational issues not commonly faced in PMR. Responses when confronted with a terminal disease are not the same as when confronted with a handicap. The role of the rehabilitation team is brought into question when functionality is of secondary importance. The response to physical pain is different in rehabilitation and often implies a behavioural approach, which requires the commitment of the patient to therapeutic programmes. We do not find this approach in oncology and the treatment of pain uses first some drugs. Supportive care of these patients requires a close working relationship with the oncology unit. Thus, a different approach must be taken to rehabilitation. It should always take into account the evolutive nature of cancer, which can undermine the patient's functions or setback the patient's recovery. It also requires the support of a care team, which is fully prepared for these setbacks.