A Systematic Review on Improving the Family Experience After Consent for Deceased Organ Donation
Review Article
Sonja Bjelland, Krista Jones
Progress in Transplantation, 2 May 2022
Abstract
Introduction
The demand for transplanted organs outweighs the supply and intensifies the need to improve care for donor families. Studies have shown inadequate care by hospital staff can increase posttraumatic stress disorder and complicated grief in these families but putting solutions into practice remains slow.
Objective
This systematic review identified factors that relieve or contribute to distress for deceased organ donor families in the time since the decision to donate. Additionally, it provides insights into potential improvements at public health, educational, and health system levels to address these deficiencies.
Methods
Search terms included organ don*, famil* or relati*, family-centered, grief, and experience*. The search covered original research articles, published in English, from 2014 to July 2021.
Results
Four key themes emerged among the studies. (a) Understanding factors that affect the emotional aftermath can help staff prevent posttraumatic stress disorder and complicated grief. (b) Improving communication by hospital staff includes: avoiding medical jargon, providing adequate audio and visual explanations, and understanding that the next of kin is struggling to comprehend the tragedy and the information they are being told. (c) End-of-life care such as memory making, bringing in palliative care resources, and parting ceremonies can assist with familial coping as well as staff interactions. (d) Families want more support in the months and years after the donation decision.
Discussion
Changes at multiple levels can improve the quality of care for families whose relative gave the gift of life, but more research and translation into practice are needed.
Category: Medical/Surgical
Consent: risk assessment, risk communication and shared decision making
Consent: risk assessment, risk communication and shared decision making
Jayne M. Sewell, Catherine Rimmer
Surgery (Oxford), 30 April 2022
Abstract
The consent process is the foundation of the modern doctor–patient relationship, and can present a challenge to doctors. The consent process can be complex, and often involves the interaction of many different factors, including ethical and legal considerations. A shared decision-making process allows for full consideration of the treatment options available, and takes into account individual patient’s concerns and preferences. Ensuring that the patient is fully informed requires a thorough understanding of the risks of an intervention for that particular patient; therefore, individualized risk assessment is of fundamental importance. Using a combination of individual patient information, formalized investigations, and population data, gives the most complete assessment of risk. Communicating that risk information to patients is key, and the doctor should always use clear language and avoid bias. The use of visual aids and information leaflets, and the avoidance of vague language and complex statistical terms, will help the patient to develop a more complete understanding of the risks they face.
An Ethical Defense of a Mandated Choice Consent Procedure for Deceased Organ Donation
An Ethical Defense of a Mandated Choice Consent Procedure for Deceased Organ Donation
Original Paper
Xavier Symons, Billy Poulden
Asian Bioethics Review, 29 April 2022
Open Access
Abstract
Organ transplant shortages are ubiquitous in healthcare systems around the world. In response, several commentators have argued for the adoption of an opt-out policy for organ transplantation, whereby individuals would by default be registered as organ donors unless they informed authorities of their desire to opt-out. This may potentially lead to an increase in donation rates. An opt-out system, however, presumes consent even when it is evident that a significant minority are resistant to organ donation. In this article, we defend a mandated choice framework for consent to deceased organ donation. A mandated choice framework, coupled with good public education, would likely increase donation rates. More importantly, however, a mandated choice framework would respect the autonomous preferences of people who do not wish to donate. We focus in particular on the Australian healthcare context, and consider how a mandated choice system could function as an ethical means to increase the organ donation rate in Australia. We make the novel proposal that all individuals who vote at an Australian federal election be required to state their organ donation preferences when voting.
Patient Experience of Informed Consent for Diagnostic Coronary Angiogram and Follow-On Treatments: A Research Brief
Patient Experience of Informed Consent for Diagnostic Coronary Angiogram and Follow-On Treatments: A Research Brief
Diane L. Carroll, Howard T Blanchard, Felicity Astin
Journal British Journal of Cardiac Nursing, 25 April 2022
Abstract
Background/Aims
Coronary angiography requires a complex informed consent process, a legal and ethical requirement before treatment, which may allow percutaneous coronary intervention (PCI) to be completed as a continuation of a coronary angiography. Patients are routinely consented for both interventions, but over a quarter will only receive diagnostic angiogram. Therefore, the specific aim of this study is to describe patients’ demography, views and understanding of the informed consent process, in patients who gave informed consent for coronary angiography and same setting PCI but were found to be ineligible for same setting PCI.
Methods
A descriptive cross sectional survey design was used to explore these patients’ views. Participants completed a 36-item survey on the day after diagnostic coronary angiography.
Results
Data was collected from a convenience sample of 62 subjects, 73% male, 68% college educated, 40% working with a mean age of 68.4 (11.4) years. Women reported; greater difficulty in recalling treatment information (p<.03) found discussions about alternative treatments more confusing (p<.02), and the disclosure of comprehensive risk information a deterrent to consent 2 for treatment (p<.02), when compared to men. Higher levels of education were associated with greater preference for information and involvement in treatment decisions (p<.002).
Conclusions
Patients who participate in an informed consent for diagnostic coronary angiography with, or without, a same-setting PCI need clear comprehensive information on alternatives. Recognizing patient’s need for information is an opportunity for nursing to provide individualized explanation and reinforcement of the information provided during informed consent
Consent for trainee participation in abortion care: A clinical survey
Consent for trainee participation in abortion care: A clinical survey
Meeting Report
Lara Crystal-Ornelas, Jessica Ma, Kelsey Holt, Christine Dehlendorf
The Annals of Family Medicine, 20 April 2022
Abstract
Context
Abortion care is an essential form of primary healthcare and is included in primary care medical training. Obtaining informed consent for trainee involvement in abortion care requires careful attention to avoid harm for patients while ensuring adequate training for the future provision of healthcare. Policies and practices related to obtaining this consent have not previously been documented; doing so has the potential to inform the development of future guidelines.
Objective
To identify current clinical practices, policies, and perspectives related to informed consent for trainee participation in abortion care.
Study Design
Cross-sectional study using a REDCap survey.
Setting
Abortion clinics training medical students and Family Medicine (FM) and/or Obstetrics and Gynecology (OBGYN) residents.
Population Studied
Surveys were disseminated via email to directors of resident abortion training programs, with 46 responses (one per site) were collected in total. Of these sites, 67% were located in large cities, 44% were ambulatory care clinics within hospitals, and 20% were resident primary care clinics. The most common trainees at these sites were OBGYN residents (83%), medical students (70%), and FM residents (30%).
Results
Just under half – 48% – reported their site has an informed consent form that mentions trainee involvement in abortion care, while 52% reported no mention of trainee involvement in their forms. With respect to policy, 65% reported their site has a general policy for trainee involvement in healthcare while 15% reported having no such policy. Notably, 20% reported not knowing whether such a policy exists. While 46% expressed the belief that asking patients specifically about trainee involvement in abortion care is very or extremely important, 80% of respondents reported that their clinical site does not provide training on obtaining this consent. Answers varied widely as to who conducts consent for trainee involvement and when consent occurs.
Conclusions
Survey responses illustrated a wide variability in clinical practices and perspectives around consent for trainee involvement in abortion care. Given the sensitive and stigmatized nature of abortion care, guidelines for the consent process can ensure that patient needs are met and their autonomy respected. Research is needed to assess patient perspectives to inform the development of these guidelines.
Informed Consent in Endoscopy: Read, Understood or Merely Signed
Informed Consent in Endoscopy: Read, Understood or Merely Signed
A.C. Carvalho, R. Cardoso, F. Pires, S. Ventura, C. Rodrigues, Â. Domingues, J. Pinho, D. Martins, P. Sousa, R. Araújo, E. Cancela, A. Castanheira, P. Ministro, M. Vieira, A. Silva
Endoscopy, 14 April 2022; 54(S01)
Abstract
Aims
While informed consent is a requirement for all invasive procedures such as those in gastrointestinal endoscopy, its standardization is a challenge. Recently, our national digestive endoscopy society developed proposals for informed consent forms and information leaflets for esophagogastroduodenoscopy and colonoscopy. The main objective was to evaluate if patients read and understood these documents.
Methods
Adult patients proposed for elective esophagogastroduodenoscopy and colonoscopy and who were able to give their informed consent were included. Informed consent forms and information leaflets were sent to patients, with a small text instruction added to the body of the informed consent form. Prior to endoscopy it was assessed whether patients adequately read the informed consent form, based on 3 criteria: patient signature, table questionnaire completion and performance of the text instruction.
Results
In total, 184 patients were included: 80 women and 104 men with a mean age of 63.6±12.4 years. Most had only basic education (77.2%) and had previously undergone an endoscopy (91.8%). 157 patients stated they had read the form (85.3%), while 27 (14.7%) did not. While most signed the form (141, 76.6%), only 46 patients (25.0%) met all 3 criteria for adequate reading and comprehension. No statistically significant association between informed consent form adequate reading and any of the assessed variables was found.
Conclusions
Most patients do not adequately read informed consent forms. Infographic strategies can direct patients’ attention and may improve these results, but they are no substitute of an effective doctor-patient relationship in obtaining informed consent.
Use and Perceptions of Shared Decision-Making by General Surgery Faculty and Trainees
Use and Perceptions of Shared Decision-Making by General Surgery Faculty and Trainees
Maham Javaid, Melanie Fritz, Mollie O’Brien, Sunday Clark, Suzanne Mitchell, Sabrina E. Sanchez
Journal of Surgical Research, 10 March 2022; 276 pp 323-330
Abstract
Introduction
The purpose of this study was to assess the practice and perceptions of shared decision-making (SDM) by both faculty and residents at Boston Medical Center and explore barriers and facilitators to implementing SDM at our institution.
Methods
We created and distributed an online survey assessing provider demographic and training characteristics, experiences with the informed consent process, practices in SDM, and perceptions about SDM. We used descriptive statistics to summarize provider characteristics and survey responses and univariate analysis to determine associations between them.
Results
Fifteen surgeons and 19 surgical residents completed the survey (49% response rate). Most respondents were aware of and had a positive attitude toward SDM (91% and 76%, respectively); 35% reported having SDM training. Providers had varying levels of engagement with different SDM practices, and there were inconsistent associations between provider characteristics and the use of SDM. Often providers thought the patient’s health literacy, foreign primary language, clinical condition, and socioeconomic factors were barriers to the SDM process.
Conclusions
Although most general surgery faculty and residents at our institution had a positive view of SDM, they engaged in SDM behaviors inconsistently, with no clear association between clinician characteristics and specific behaviors. We identified several barriers to SDM consistent with those identified by providers in other specialties. This highlights the need for further research to study live general surgery provider-patient interactions, as well as structured SDM education to train general surgery providers to reliably engage their patients in effective SDM.
Procedure and Informed Consent of Patients for Capsule Endoscopy
Procedure and Informed Consent of Patients for Capsule Endoscopy
Book Chapter
Byung Ik Jang
Small Intestine Disease, 5 April 2022; pp 79-82 [Springer]
Abstract
Capsule endoscopy allows the intestinal mucosa of patient to be examined without discomfort after a patient swallows the capsule for small intestinal examination. When conducting capsule endoscopy for diagnosing small intestinal disease, medical staffs must be fully aware of the entire procedures to ensure quality of capsule endoscopy and improvement of diagnosis. When conducting capsule endoscopy, patients must be fully informed of the preparation process before examination, the endoscopy itself and provisions after the examination. After being informed of all needed information, patients can then sign the consent for capsule endoscopy.
Awareness on consent and counselling among patients attending tertiary care hospitals : a cross-sectional study
Awareness on consent and counselling among patients attending tertiary care hospitals : a cross-sectional study
S. Rao, P. Sagar, B. V. S. R. Kumari
Sri Lanka Journal of Surgery, 31 March 2022
Abstract
Introduction
Surgical consent and counselling are an integral part of medical practice and medical education. This study was done to know how many of the residents provide complete and accurate information to the patient during their training period.
Methods
Sixty residents from various surgical departments and 40 patients who were undergoing surgery were selected. The data was collected through interviews using two different questionnaires. The resident’s questionnaire provided the information they provide to patients. The patient’s questionnaire provided information on the level of their understanding from the interaction. Data were analysed using coGuide.
Results
Out of 60 residents, 56(92 %) reported that the side effects and consequences were explained fully. 25% of residents mentioned the name of the surgery and nearly 100% did not mention the operating surgeon’s or unit in charge name. About 79% of residents felt that the patient was convinced with their way of communication, nearly 93 % of patients were convinced their disease process was explained well and 50% felt that the doctor informed the consequences of surgery well. 75% responded that doctor did not inform about the side-effects 98% were not aware of the alternative forms of treatment and, 87% of patients were not informed about the chances of recurrence of disease where ever applicable.
Conclusion
The majority of residents were convinced that their conveying skills are adequate for surgical counselling but they felt the need to improve. The majority of patients denied discussing complications when occurred.
Toolkit for the management of breast implants and the importance of Informed educated consent
Toolkit for the management of breast implants and the importance of Informed educated consent
Editorial
Anand K Deva, Mark Ashton
Australasian Journal of Plastic Surgery, 31 March 2022; 5(1)
Open Access
Abstract
Breast implants have had a long and chequered history of periodic regulatory activity and class actions and are associated with significant medium and long term health risks, including the development breast implant associated anaplastic large cell lymphoma (BIA-ALCL). NSW Health through the Agency of Clinical Innovation has just released a toolkit for the management of breast implants. These are the result of collaborative clinical consensus across leaders in plastic and reconstructive surgery, breast surgery and radiology with support from the Surgical Services Taskforce and evidence directorate of the agency. Input was also sought from health consumers to ensure that the language and structure of the information was both comprehensive and accessible to women who were either considering either cosmetic augmentation or reconstruction and/or have breast implants in place.