Legal issues in end-of-life care 2: consent and decision-making
Helen Taylor
Journal of Paramedic Practice, 9 November 2020; 12(11)
Abstract
Paramedics are legally and professionally obliged to uphold their patients’ right to dignity, respect and autonomy—and this includes the general requirement to obtain their consent before proceeding with any intervention. The first instalment of this two-part article considered the challenges that this might present to the paramedic. This second article develops this theme and further explores the legal framework underpinning the decision-making process when caring for a patient approaching the end of life. It also examines issues around consent and mental capacity in more depth and addresses matters such as such as advance decisions to refuse treatment (ADRT) and do not attempt cardio-pulmonary resuscitation (DNACPR) decisions.
Month: December 2020
Controversies of consent: the contradictory uses of indigenous free, prior, and informed consultation and consent in Panama [DISSERTATION]
Controversies of consent: the contradictory uses of indigenous free, prior, and informed consultation and consent in Panama [DISSERTATION]
Marian Ahn Thorpe
Rutgers University; School of Graduate Studies, October 2020
Description
This dissertation examines the right of Free, Prior, and Informed Consultation and Consent (FPIC) in western Panama, where Ngäbe Indigenous communities have long fought to protect their land from copper mines, hydroelectric projects, and other forms of development. Drawing on sixteen months of ethnographic and legal research between 2013 and 2016, I demonstrate that, like other forms of multicultural recognition, FPIC can be used by states to manage Indigenous dissent and rights-wash contentious projects. This management can take place through careful attention to the wording or procedural details of FPIC policies; or, it can occur through the ways in which consent-seekers and consent-givers exploit or circumvent conflict-prone community decision-making processes. However, while FPIC can be used to limit Indigenous rights, I also show how various groups of Ngäbe still defy and work within these constraints. More broadly, I show that the Western liberal conception of consent as autonomous free choice obscures ways in which consent embeds subjects in relations of power. By framing consent not as a sign of freedom but as a sign of power relations, I underscore how FPIC and other forms of multicultural recognition join together Indigenous peoples and states to collaboratively create the multicultural state.
Participant understanding of informed consent in a multidisease community-based health screening and biobank platform in rural South Africa
Participant understanding of informed consent in a multidisease community-based health screening and biobank platform in rural South Africa
Nothando Ngwenya, Manono Luthuli, Resign Gunda, Ntombizonke A Gumede, Oluwafemi Adeagbo, Busisiwe Nkosi, Dickman Gareta, Olivier Koole, Mark Siedner, Emily B Wong, Janet Seeley
International Health, 9 November 2020; 12(6) pp 560–566
Abstract
Background
In low- and middle-income settings, obtaining informed consent for biobanking may be complicated by socio-economic vulnerability and context-specific power dynamics. We explored participants experiences and perceptions of the research objectives in a community-based multidisease screening and biospecimen collection platform in rural KwaZulu-Natal, South Africa.
Methods
We undertook semi-structured in-depth interviews to assess participant understanding of the informed consent, research objectives and motivation for participation.
Results
Thirty-nine people participated (individuals who participated in screening/biospecimen collection and those who did not and members of the research team). Some participants said they understood the information shared with them. Some said they participated due to the perceived benefits of the reimbursement and convenience of free healthcare. Most who did not participate said it was due to logistical rather than ethical concerns. None of the participants recalled aspects of biobanking and genetics from the consent process.
Conclusions
Although most people understood the study objectives, we observed challenges to identifying language appropriate to explain biobanking and genetic testing to our target population. Engagement with communities to adopt contextually relevant terminologies that participants can understand is crucial. Researchers need to be mindful of the impact of communities’ socio-economic status and how compensation can be potentially coercive.
Medical informed choice: understanding the element of time to meet the standard of care for valid informed consent
Medical informed choice: understanding the element of time to meet the standard of care for valid informed consent
Zachary R Paterick, Timothy Edward Paterick , Barb Block Paterick
Postgraduate Medical Journal, 9 December 2019
Open Access
Abstract
Medical informed choice is essential for a physician meeting their fiduciary duty when proposing medical and surgical actions, and necessary for a patient to consent or cull the outlined therapeutic approaches. Informed choice, as part of a shared decision-making model, allows widespread give-and-take of ideas between the patient and physician. This sharing of ideas results in a partnership for decision-making and a responsibility for medical and surgical outcomes. Informed choice is indispensible to the patient education process that meets the desired outcome of any covenant —an offer of and acceptance of the proposed treatment. The covenant anchors a true patient–physician partnership with parity and equality in decision-making and medical/surgical outcomes. Medical informed choice flows from ethical and legal principles necessary to meet the acknowledged standard of care. This is codified by statute and fortified in general common law. This espouses a fiduciary relationship where the patient and physician understand and accede to the degree of autonomy the patient requests. The growth of an equal patient–physician relationship requires time. There is no alternative to the time variable when developing a physician–patient relationship. Despite physicians being under pressures to perform more clinical and administrative duties in less time in the corporate model of medicine, time remains the most critical variable when considering informed choice and shared decision-making. Videos, pamphlets and alternate healthcare providers cannot and should not substitute for physician time.
Informed Consent for Laser Therapy in Scar Management
Informed Consent for Laser Therapy in Scar Management
Youssof Oskrochi, David Bodansky, Kayvan Shokrollahi, Adeyinka Molajo
Laser Management of Scars, 25 November 2020; pp 107-110
Abstract
The aim of this chapter is to provide an overview of consent as relevant to laser therapy. This is especially relevant because lasers and laser treatment can be complex and difficult to explain, may require multiple sessions and have a distinct risk of complications that can be mitigated through good communication, safe practice and appropriate documentation.
Consent for Medical Autopsy
Consent for Medical Autopsy
Adrian Charles
Practical Manual of Fetal Pathology, 17 November 2020; pp 19-25
Abstract
In many countries as well as the consent as above, legally the autopsy is authorized by a human tissue act officer or medical director or their nominee, who legally allows the postmortem to go ahead. This is done after parental consent. There are variations throughout the world, and some of these are discussed. Consent is now recognised to be a process, a communication and understanding, and not just a simple signature to an official form.
Presumed consent and the implications for eye donation
Presumed consent and the implications for eye donation
Editorial
Parwez Hossain
Eye, 9 November 2020
Open Access
Excerpt
…In this issue, Dimitry et al. remind us of the recent change in the law for England. In their letter, they provide an overview of the implications of the opt-out system on eye donation rates in countries in mainland Europe where there is a longer track record of this kind of legal change. Despite providing benefits to organ donation, increases in eye donation are not similarly matched. The authors highlight that in some countries, more specific measures such as education and infrastructure changes could be more effective. From personal experience of running an eye donation service, the training of allied health professionals such as trained eye retrievers, end of life care professionals would increase the capacity of a healthcare system to identify and retrieve potential eye donations. In many hospitals and healthcare organisations, this human infrastructure appears to be the rate limiting factor for higher eye donations…
Incorporating Evidence-Based Practice Into Informed Consent Practice
Incorporating Evidence-Based Practice Into Informed Consent Practice
Research Article
James W. Drisko
Families in Society: The Journal of Contemporary Social Services, 6 November 2020
Abstract
This conceptual article argues that evidence-based practice (EBP) is best understood as a component of the informed consent process preceding treatment. The legally mandated informed consent/consent to treat process requires that professionals disclose to clients the nature of services along with potential risks, benefits, and alternatives. Informed consent is a long-standing part of professional practice ethics with over a century of legal precedents. The more recent EBP process also requires discussion with the client of the best research-supported treatments, which are explored in combination with the client’s values and preferences and the professional’s expertise, to develop a treatment plan. Yet, EBP has not been clearly linked to informed consent for treatment. EBP can be usefully understood as part of the more comprehensive informed consent ethics process. New practice and ethics competencies are examined.
Informed Consent for Percutaneous Coronary Intervention: A Patient Perspective of a Complex Process
Informed Consent for Percutaneous Coronary Intervention: A Patient Perspective of a Complex Process
Howard T. Blanchard, Diane L. Carroll, Felicity Astin
Cath Lab Digest, 4 November 2020; 28(11)
Open Access
Abstract
Background
Percutaneous coronary intervention (PCI) involves a complex informed consent process. Consent is sought simultaneously for a diagnostic angiography and the potential treatments that follow, including PCI, and fosters shared decision making. This process involves several healthcare providers, yet there has been limited data from the United States regarding the patient’s perspective of informed consent for PCI.
Objective
To describe U.S. patients’ perception of their PCI informed consent process, and of PCI treatment risks and benefits.
Methods
Patients admitted for coronary angiography were approached and if they volunteered for the study, completed a survey on their informed consent experience for PCI following their procedure. The survey asked about purpose of consent, attitudes, risks, benefits, and outcomes of PCI.
Results
There were 82 participants who had undergone PCI, with a mean age of 65 years. Participants included 64 males and 17 females. The majority of participants recognized the key components of choice (88%), risks (94%), and benefits (87%), and 65% of participants were aware of the alternatives for PCI from the informed consent experience. Participants expressed a desire for more information, but also admitted that they had trouble retaining the information. Eighty-nine percent had misconceptions that PCI would prevent a future myocardial infarction. Forty percent of the participants stated that they preferred family to be present during informed consent.
Conclusions
Healthcare providers can improve the informed consent experience by providing clear information, clarifying concerns, and by encouraging family questions and involvement.
Informed consent, duty of disclosure and chiropractic: where are we?
Informed consent, duty of disclosure and chiropractic: where are we?
Debate
Keith Simpson, Stanley Innes
Chiropractic & Manual Therapies, 4 November 2020; 28(60)
Open Access
Abstract
Background
The COVID-19 pandemic has seen the emergence of unsubstantiated claims by vertebral subluxation-based chiropractors that spinal manipulative therapy has a role to play in prevention by enhancing the body’s immune function. We contend that these claims are unprofessional and demonstrate a disturbing lack of insight into the doctrine of informed consent. As such it is timely to review how informed consent has evolved and continues to do so and also to discuss the attendant implications for contemporary health practitioner practice.
We review the origins of informed consent and trace the duty of disclosure and materiality through landmark medical consent cases in four common law (case law) jurisdictions. The duty of disclosure has evolved from a patriarchal exercise to one in which patient autonomy in clinical decision making is paramount. Passing time has seen the duty of disclosure evolve to include non-medical aspects that may influence the delivery of care. We argue that a patient cannot provide valid informed consent for the removal of vertebral subluxation. Further, vertebral subluxation care cannot meet code of conduct standards because it lacks an evidence base and is practitioner centered.
The uptake of the expanded duty of disclosure has been slow and incomplete by practitioners and regulators. The expanded duty of disclosure has implications, both educative and punitive for regulators, chiropractic educators and professional associations. We discuss how practitioners and regulators can be informed by other sources such as consumer law. For regulators, reviewing and updating informed consent requirements is required. For practitioners it may necessitate disclosure of health status, conflict of interest when recommending “inhouse” products, recency of training after attending continuing professional development, practice patterns, personal interests and disciplinary findings.
Conclusion
Ultimately such matters are informed by the deliberations of the courts. It is our opinion that the duty of a mature profession to critically self-evaluate and respond in the best interests of the patient before these matters arrive in court.
Center for Informed Consent Integrity 