People with Early Onset Parkinson's Disease: Empowered to Improve Care.

Patient organizations play an ever-growing role in modern societies by providing organized resources for patients and care partners. Importantly, patient organizations enable patients to define and share their needs and views. In Parkinson's disease (PD), patient organizations play significant roles in different countries. However, there is limited support and resources tailored for people with early onset Parkinson's disease (EOPD). These individuals face unique social, professional, and personal challenges that are often not accounted for by general PD organizations, which play very important roles for a significant proportion of individuals with PD. In Portugal, this was the situation until 2022, when Young Parkies Portugal (YPP) was founded to allow people with EOPD and various stakeholders to join forces to cover their specific needs. In this manuscript, we aim to share our experience in building an association for people with EOPD, reflecting on the reasons for this need, the activities developed thus far, challenges in implementation, and future directions. In summary, we believe that nonprofit organizations like YPP play an essential role in shaping the care and support of people with PD care and should be considered key partners of care alongside the larger multidisciplinary team. We are confident that sharing our experience can inspire and guide the implementation of similar initiatives in other countries.

The Portuguese versions of the This Is ME Questionnaire and the Patient Dignity Question: tools for understanding and supporting personhood in clinical care.

BACKGROUND: Modern medicine can be impersonal and routinized, paying insufficient attention to issues of personhood. The Patient Dignity Question (PDQ) and This Is ME (TIME) Questionnaire are clinical tools developed with the aim of probing for personhood, reinforcing dignity and promoting health care attitudes based on looking at people for who they are and not defining them solely based on their medical condition. This study aimed to translate and validate the TIME Questionnaire and the PDQ into European Portuguese, coined as Questionário Este Sou EU (ESEU) and Pergunta da Dignidade (PD), respectively. METHODS: A three-stage research design, namely: a forward and back translation process (which included an expert committee panel), collected data on a sample of 43 non-institutionalized active elderly for the validation stage and a final expert panel consultation. Inclusion criteria: being 50 years old or older; ability to provide written informed consent; ability to read, speak and understand Portuguese. RESULTS: The original TIME authors fully endorsed the back translated version. A Portuguese version was created. Forty-three participants (response rate of 62%) were included, 53% of whom were male. The average age was 69 years old (range, 60-80 years old). The interviewed elderly strongly felt that the ESEU's summary captured their essence as a person beyond whatever health problems they might be experiencing (6.8, SD =0.48), heightened their sense of dignity (6.1, SD =1.48), considered important that health care professionals (HCPs) have access to ESEU´s summary (6.6, SD =0.73) and that this information could affect the way HCPs see and care for them (6.4, SD =0.86), rated on a Likert scale: 1 "strongly disagree"-7 "strongly agree". According to the experts' evaluations, the translated ESEU Questionnaire was clear, precise, comprehensible and captured important dimensions of personhood. CONCLUSIONS: The Questionário ESEU and the PD are clear, precise, comprehensible and well-aligned in terms of measuring aspects of personhood. This measure could add additional value to the patient-healthcare provider relationship, allowing a new perspective on how healthcare professionals perceive patients in suffering, ensuring they acknowledge not just patienthood, but critical dimensions of personhood.

Ethical decision making in pain management: a conceptual framework.

INTRODUCTION: The practice and study of pain management pose myriad ethical challenges. There is a consensual opinion that adequate management of pain is a medical obligation rooted in classical Greek practice. However, there is evidence that patients often suffer from uncontrolled and unnecessary pain. This is inconsistent with the leges artis, and its practical implications merit a bioethical analysis. Several factors have been identified as causes of uncontrolled and unnecessary pain, which deprive patients from receiving appropriate treatments that theoretically they have the right to access. Important factors include (with considerable regional, financial, and cultural differences) the following: 1) failure to identify pain as a priority in patient care; 2) failure to establish an adequate physician-patient relationship; 3) insufficient knowledge regarding adequate prescription of analgesics; 4) conflicting notions associated with drug-induced risk of tolerance and fear of addiction; 5) concerns regarding "last-ditch" treatments of severe pain; and 6) failure to be accountable and equitable. OBJECTIVE: The aim of this article was to establish that bioethics can serve as a framework for addressing these challenging issues and, from theoretical to practical approaches, bioethical reflection can contextualize the problem of unrelieved pain. METHODS: This article is organized into three parts. First, we illustrate that pain management and its undertreatment are indeed ethical issues. The second part describes possible ethical frameworks that can be combined and integrated to better define the ethical issues in pain management. Finally, we discuss possible directions forward to improve ethical decision making in pain management. DISCUSSION: We argue that 1) the treatment of pain is an ethical obligation, 2) health science schools, especially medical training institutions, have the duty to teach pain management in a comprehensive fashion, and 3) regulatory measures, which prevent patients from access to opioid treatment as indicated in their cases, are unethical and should be reconsidered. CONCLUSION: Developing an ethical framework for pain management will result in enhanced quality of care, linking the epistemic domains of pain management to their anthropological foundations, thereby making them ethically sound.

Bioethics education on deliberation--a view of a novel: Blue Gold, by Clive Cussler.

Since the focus of Bioethics is the bridge between Humanities and the Life Sciences and bearing in mind that this bridge is often difficult to build, those who believe that this dialogue is important in our days should promote it through Education. By educating in Bioethics it is possible to improve the participation of the citizens in debates on the ethical issues raised by new technologies and scientific research. It is our conviction that literary texts are laboratories of ethical judgment, where the ethical questions concerning specific scientific/ technological issues are addressed in an imaginary world. Therefore our purpose is to present a framework for ethical deliberation through the use of literature. Fiction allows us to "practise" ethical decision making, by focusing on the particular cases of the characters of the story and by checking how the principles/theories working in the background apply to the narrated cases.

Searching for otherness: the view of a novel.

The ethical issues concerning the use of PGD (Preimplantation Genetic Diagnosis) to select embryos of a particular HLA (Human Leukocyte Antigen) type are numerous. They arise from the potentially conflicting interests between those of the pre-existing child, the subject of a treatment which may be curative, and those of the sibling to be created, who cannot give consent to the donation, together with the problem of the destruction of potentially healthy embryos. This essay focuses on the web of vulnerabilities affecting the parents, the sick child and the "saviour sibling," while addressing three areas: science, bioethics and literature. The novel My Sister's Keeper, by Jodi Picoult, provides the reader with an in-depth view of the conflicting interests and emotional problems that affect the Fitzgeralds, a family experiencing the pain of seeing one of their children dying while facing the tragic consequences of trying to save this child by having another offspring.