PHEMS’ Post

Today, I defended my #doctoraldissertation titled “#PerinatalEthics: the role of #ethicsconsultation around parental dilemmas before and after birth.” My work argues that distinctive ethical quandaries occur in the perinatal clinical setting. Hence, healthcare ethics consultants need to master distinctive knowledge, skills, and competencies to facilitate an ethical resolution that aligns the needs and values of the parents with professional standards and requirements of health care. The analysis noted that, surprisingly, neither the ASBH nor the VHA provide guidance to conduct clinical ethics consultations in this widespread clinical setting of perinatal ethics. The contribution of the dissertation is to encourage an ethical discourse on perinatal ethics by considering together the ethical issues arising in obstetrics with those arising when caring for a sick newborn. With this defense, I ended another chapter of my life. Getting ready for my next adventure at Cleveland Clinic Center for Bioethics in July!

Hospice & Palliative Care Network of Maryland Ethics Conference Join us for this inaugural one-day event on Thursday, May 23, 2024, at the Handelman Conference Center in Columbia. We'll be delving into the heart of ethical considerations in end-of-life care. Whether you're a healthcare professional, social worker, or advocate, this conference offers invaluable insights to elevate the standard of care for those facing life's most profound moments.  CE will be offered for nurses and social workers. Topics include: --Implicit Bias --How to Structure an Ethics Committee in Your Organization --Ethical Boundaries in End of Life Care --Ethical Considerations for Medial Aid in Dying Registration and details - https://lnkd.in/eCW2_F4e.

The Spring 2024 issue of Journal of Pediatric Ethics Feature Article is: Parents' Perspectives on Values and Values Conflicts Impacting Shared Decision Making for Critically Ill Neonates by Chris Krenz, Kayte Spector-Bagdady, Raymond De Vries, and Stephanie Kukora #Pediatric #Ethics #NICU #Values #DecisionMaking ABSTRACT  Background  Guidelines from professional societies recommend that, in situations of critically ill neonatal patients, goals-of-care decisions be approached jointly by physicians and parents and be based on medical information and parents’ values. How to effectively engage in shared decision making in this context is debated, however, and emerging evidence suggests that clinicians and parents perceive these decisions and their roles in decision making very differently.  Methods  Semi structured interviews were conducted with parents (n = 15) who had been given a critical antenatal diagnosis and faced difficult decisions about their child’s care goals. Parents of infants with a broad range of diagnoses, expected poor prognoses, medical/surgical therapies, and medical outcomes were enrolled. A coding scheme was developed through an iterative process of reading transcripts and team meetings. Each transcript was coded by two team members who met to reconcile discrepancies.  Results  Parents reported many considerations when they made goals-of-care decisions, including weighing the chances of survival and acceptable quality of life, avoiding suffering, ensuring all options were tried, remaining hopeful, and being a good parent. Although most parents trusted their care team, many reported their values were in conflict with their clinicians’ and that impacted their decision-making experience and generated negative emotions and distrust. When parents’ and clinicians’ values differ, conflicts arise that can result in negative experiences and distrust. Better understanding of parents’ values by clinicians may reduce conflicts and support shared decision making.  Conclusions  Parents of critically ill neonates consider a number of values when making goals-of-care decisions for their infants. When parents’ and clinicians’ values differ, conflicts arise  that can result in negative experiences and distrust. Better understanding of parents’ values by clinicians may reduce conflicts and support shared decision making. 

📢 Call for Papers: Special Issue on Ethical, Practical and Systemic Challenges Facing Children with Complex Chronic Conditions: A Global Health Perspective We are editing a special issue of the Monash Bioethics Review that aims to collect and explore diverse perspectives and experiences on the challenges faced by children with complex chronic conditions and their families, with particular attention to the global health perspective. Children with complex chronic conditions are a group of children who experience fragility, functional limitations, high healthcare service needs, and high healthcare utilisation. Due to poor integration and communication among different providers, health outcomes for this group are often variable and poor. Families of children with complex chronic conditions often encounter social and financial challenges, including the high cost of treatments and care, stigma, and other obstacles related to accommodating the child’s needs. While the specific circumstances surrounding these challenges may differ, the distinct needs and vulnerabilities of this population are similar, and certain ethical obligations towards them exist. Systemic inefficiencies are likely to further exacerbate the health and social inequalities these children face, leading to disadvantages with clinical and non-clinical consequences that extend into adulthood. Despite their importance, these issues have not been properly considered in policy and ethics debates so far. This call for papers aims to encourage a better understanding of the intersection of social and public health, the universal and specific challenges related to the care of this population, and how different ethical, political, and cultural values may affect responses to these challenges. It will provide a platform for sharing knowledge and ideas, and for promoting the development of effective policies and practices to improve the care and support provided to children with complex conditions and their families. We hope that this special issue will contribute to the broader conversation on global health and the care of this vulnerable population. The deadline for manuscript submissions is 30 September 2024. See the Monash Bioethics Review for full details: https://lnkd.in/eyWARXYH For any queries surrounding the relevance of a prospective article to the special issue, please contact the guest editors at: sapfo.lignou@ethox.ox.ac.uk

Novel technology can fight social inequality in Alzheimer’s research, but what happens when this poses new ethical questions? Prism.bio co-founder and bioethics expert Spencer Hey co-authors a new paper on the ethics of algorithms to identify people living with Alzheimer’s and related dementias. So, how do we help historically marginalized people gain access to research while still protecting their rights and welfare? Check out the article: https://bit.ly/3Hnxx2j #alzheimers #dementia

Taking Care - is a core aspect of nursing; yet so many ethical questions arise when we think about the act of caring. Sometimes it is the "outsider," one who has "seen" nursing up close, who can help us understand who we are and the power of caring. Sarah DiGregorio, NNEC’s 2024 keynote speaker and author of Taking Care: The Story of Nursing and Its Power to Change Our World will bring us back to who we are and why we matter. Christine Watson, wrote in the NYTimes (May 2, 2023), “Nursing is science and art, it is physiology and pharmacology and advocacy and ethics, and biology and story and sociology and philosophy. It is near impossible to articulate nursing in its vastness, yet Sarah DiGregorio has condensed its profound meaning into a call to arms. Perhaps the most important question asked by DiGregorio is, “Can we be human without nursing?” Read an interview with Sarah DiGregorio on the Ethics of Caring website – Speaker Spotlights ethicsofcaring.org

Law and Ethics in Paediatrics This short course will help you to develop a systematic understanding of medical law and ethics as applied to paediatric practice, with a critical awareness of current problems and new insights in the field. https://lnkd.in/dfGnsuhV

Everyone made Tuskegee about "informed consent," but to me that seems a helpless ethic for which to strive; "transparency" is a little better, but even with academic affiliation, I can't access all the articles I want to access. On the other hand, there was a general aspect to what was horrifying about Tuskegee that often goes undiscussed in ethics conversations. We fall into shock /not/ because the patients were uninformed, but because the doctors were more concerned with learning about disease progression than they were with just fixing disease. There is always more to learn about disease progression, but if it comes to the point where that's all that's left to learn about a topic — that is, you already know how to fix the disease in the cases whose progressions you might otherwise study — maybe it's time to switch topics. It seems unhealthy to the psychologies both of the researcher and of anyone reading his or her research, to delve further, and if the research is on human subjects, it's obviously still more unhealthy to said subjects. I'm not opposed to informed consent, and certainly not to transparency nor to equality of treatment access. But there is more to discuss, and maybe something still more important for which to strive.

📚 Exciting News! My doctoral work has been published and is now available for everyone interested in the field of nursing ethics and higher education. You can read the full dissertation here: https://lnkd.in/dbUbvHVc #openscience #phdthesis