Ethical and Legal Implications of Elective Ventilation and Organ Transplantation: “Medicalization” of Dying versus Medical Mission

A critical controversy surrounds the type of allowable interventions to be carried out in patients who are potential organ donors, in an attempt to improve organ perfusion and successful transplantation. The main goal is to transplant an organ in conditions as close as possible to its physiological live state. “Elective ventilation” (EV), that is, the use of ventilation for the sole purpose of retrieving the organs of patients close to death, is an option which offsets the shortage of organ donation. We have analyzed the legal context of the dying process of the organ donor and the feasibility of EV in the Italian context. There is no legal framework regulating the practice of EV, neither is any real information given to the general public. A public debate has yet to be initiated. In the Italian cultural and legislative scenario, we believe that, under some circumstances (i.e., the expressed wishes of the patient, even in the form of advance directives), the use of EV does not violate the principle of beneficence. We believe that the crux of the matter lies in the need to explore the real determination and will of the patient and his/her orientation towards the specific aim of organ donation.

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Introducing an Organ Donor Registry is Saskatchewan

Health Reform Observer - Observatoire des Réformes de Santé ◽

10.13162/hro-ors.v9i2.4598 ◽

2021 ◽

Vol 9 (2) ◽

Author(s):

Amy Zarzeczny ◽

◽

Luiza Radu ◽

Keyword(s):

Organ Donation ◽

Public Interest ◽

Public Awareness ◽

National Level ◽

Organ Donor ◽

Organ Donors ◽

Media Campaign ◽

Organ Donations ◽

Paper Form ◽

Evaluation Metric

On 3 September 2020, Saskatchewan launched an organ donor registry that allows participants 16 years and older to register their intent to be an organ donor either online or using a paper form. Saskatchewan has historically performed poorly at a national level with low rates of organ donations. Saskatchewan's new registry is intended to increase the numbers of organ donors in the province, while also helping to modernize its organ donation system and ease donation conversations with families. Saskatchewan's introduction of this registry brought the province in line with other provinces and territories across Canada that use similar systems, and provided a response to the surge in public interest around organ donation that followed the Humboldt Bronco bus crash tragedy and related ``Logan Boulet Effect.'' The 2019-2020 and 2020-2021 provincial budgets included dedicated funding for the development and launch of the registry, which was accompanied by a media campaign to increase public awareness. Though it is too early to evaluate the success of the registry, early indications suggest donation rates will be a key evaluation metric. Registries are commonly thought to help increase public awareness of, and support for, organ donation, but improving Saskatchewan's organ donation rates will likely also require companion measures to strengthen the culture and practice of donation in the province.

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Abstract 16: Sex Disparities in Organ Donation: Finding an Equal Donor Pool

Circulation Cardiovascular Quality and Outcomes ◽

10.1161/hcq.13.suppl_1.16 ◽

2020 ◽

Vol 13 (Suppl_1) ◽

Author(s):

Erika Yee ◽

Seyedeh Maryam Hosseini ◽

Bianca Duarte ◽

Shannon Knapp ◽

Nancy K Sweitzer ◽

...

Keyword(s):

Organ Donation ◽

Family Member ◽

Family Members ◽

Organ Donor ◽

Medical Mistrust ◽

Organ Donors ◽

Donor Pool ◽

Men And Women ◽

Willingness To Donate ◽

Amazon's Mechanical Turk

Introduction: The majority of living organ donors are women, and the majority of deceased organ donors are men. This poses a problem for transplant candidates who have worsened survival with sex mismatched organs. The objective of this study was to identify reasons for disparities in organ donation between sexes and identify strategies to increase organ donors. Methods: We conducted a fifteen question survey using a crowdsourcing marketplace, Amazon’s Mechanical Turk, in September 2019. The survey assessed how participants make decisions about becoming an organ donor. The survey was distributed to U.S. adult participants, including eight write-in questions and two Likert scale questions. Qualitative descriptive analyses were used to understand reasons for and against becoming an organ donor. Quantitative results were compared with t test. Results: Among the 667 eligible participants representing 49 states, 54.9% were women and 63.1% were in the 18-40 age group. The majority of men (64.8%) and women (63.4%) were registered organ donors. Among men and women donors, three themes guided their willingness to donate: desire to help others, personal experience with organ donors/recipients, and believing organs would have no use to the donor once dead. Among men and women non-donors, decisions were guided by three themes: no reason, medical mistrust, considering becoming a donor. Themes varied by sex when considering whether to donate organs of a deceased family member. Women were guided equally by two themes: family member’s wishes and believing the deceased family member had no further use for organs. Men had similar themes but valued the family member’s wishes more. Women’s willingness to donate their own organs to family members (p=0.03) and strangers (p=0.02) was significantly higher than men. Among non-donors, both sexes would consider becoming organ donors if more information was provided. Conclusion: In a national survey of adults, women and men had similar reasons for becoming and not becoming an organ donor. However compared to men, women were more willing to donate their organs and more altruistic in the donation of family members’ organs. Women’s deceased organ donation may increase with further communication of women’s wishes before death and by improved public education about organ donation.

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Illinois Department of Motor Vehicle Customers’ Reasons for (Not) Registering as an Organ Donor

Progress in Transplantation ◽

10.1177/1526924819835838 ◽

2019 ◽

Vol 29 (2) ◽

pp. 157-163 ◽

Cited By ~ 2

Author(s):

Tobias Reynolds-Tylus ◽

Brian L. Quick ◽

Andy J. King ◽

Miriam Moore

Keyword(s):

African Americans ◽

Organ Donation ◽

Motor Vehicle ◽

Organ Donor ◽

Organ Donors ◽

Biological Sex ◽

Negative Beliefs ◽

Personal Experiences ◽

Promotional Efforts ◽

Promotional Messages

Context: Organ donation campaigns are maximized when promotional messages address salient issues among the intended audience. A diverse sample (N = 1573) was recruited to identify the reasons for (not) registering as an organ donor. Objective: Relying on an established coding scheme, an updated explanation for why individuals register (or not) as organ donors is provided. Moreover, registration trends with respect to race, biological sex, and age is presented. Method: Participants exiting Department of Motor Vehicle offices (N = 12) were surveyed to understand their reasons for registering and not registering as organ donors. Results: Benefits of donation followed by prior registration, rational arguments, and personal experiences represented nearly 90% of the coded responses for registering. Conversely, negative beliefs, decisional uncertainty, perceived disqualification, no reason, general fear/disgust, and lack of opportunity constituted nearly 90% of the coded responses for not registering as an organ donor. Whites and Latinx individuals were more likely to register as organ donors compared to African Americans. Participants in the lower (18-24) and upper (65+) age brackets had the lowest donor registration rates. Conclusion: Promotional efforts should continue to target younger and older audience segments with information about organ donation as well as African Americans. Results from the current study suggest emphasizing the benefits of organ donation as well as overcoming negative beliefs, decisional uncertainty, and perceived disqualifications.

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Safety and Biovigilance in Organ Donation (SAFEBOD): Protocol for a Population-Based Cohort Study

JMIR Research Protocols ◽

10.2196/18282 ◽

2020 ◽

Vol 9 (10) ◽

pp. e18282

Author(s):

Brenda Rosales ◽

James Hedley ◽

Nicole De La Mata ◽

Claire M Vajdic ◽

Patrick Kelly ◽

...

Keyword(s):

Health Outcome ◽

New Zealand ◽

Data Collection ◽

Organ Donation ◽

Perceived Risk ◽

Organ Donor ◽

Outcome Data ◽

Transmission Risk ◽

Data Sets ◽

Organ Donors

Background Tension lies between the need to increase access to organ transplantation and the equally urgent need to prevent inadvertent transmission of infectious diseases or cancer from organ donors. Biovigilance, or the evaluation of potential donors, is often time-pressured and may be based on incomplete information. Objective The Safety and Biovigilance in Organ Donation (SAFEBOD) study aims to improve estimates of infection and cancer transmission risk and explore how real-time data access could support decision-making. Methods We will link existing donor referral, actual donor, recipient, and health-outcome data sets from 2000-2015 in New South Wales. Organ donor data sets will include the Organ Donor Characterizing Risk-Profile of Donors Study, the National Organ Matching System, the Australian and New Zealand Organ Donor Register, and the Australian and New Zealand Living Donor Kidney Register. Recipient data sets will include the Australian and New Zealand Dialysis and Transplant Register, the Australian and New Zealand Cardiothoracic Register, the Australian and New Zealand Islet and Pancreas Register, and the Australian and New Zealand Liver Transplant Register. New South Wales health outcome data sets will include HIV and AIDS Notifications and Surveillance Data, the Notifiable Conditions Information Management System, Admitted Patient Data Collection, Emergency Department Data Collection, the Central Cancer Registry, and the Cause of Death Data Collection. We will link organ donors to transplant recipients and health outcomes data sets using probabilistic data-matching based on personal identifiers. Transmission and nontransmission events will be determined by comparing previous cases in donors and posttransplant cases in recipients. We will compare the perceived-risk at referral with the verified risk from linked health outcome data sets and the odds of cancer or contracting an infectious disease in organ recipients from donors based on their transmission-risk profile and estimate recipient survival by donor transmission risk group. Results Data were requested from each of the listed registries in September 2018, and data collection is ongoing. Linked data from all listed data sets are expected to be complete in September 2020. Conclusions The SAFEBOD study will overcome current limitations in organ donation by accessing comprehensive information on referred organ donors and recipients in existing data sets. The study will provide robust estimates of disease transmission and nontransmission events based on recent data. It will also describe the agreement between perceived risk estimated at the time of referral and verified risk when all health outcome data are accessible. The improved understanding of transmission and nontransmission events will inform clinical decisions and highlight where current policies can be revised to broaden the acceptance of deceased donors. International Registered Report Identifier (IRRID) DERR1-10.2196/18282

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Chaplain “DOs and DON’Ts” on Organ Donation

Ethics & Medics ◽

10.5840/em201843711 ◽

2018 ◽

Vol 43 (7) ◽

pp. 1-2

Author(s):

Jozef Zalot ◽

Keyword(s):

Organ Donation ◽

Organ Procurement ◽

Family Members ◽

Organ Donor ◽

Organ Donors ◽

Vital Organ ◽

Course Of Action ◽

Donation Process ◽

Organ Procurement Organizations ◽

The Relationship

This guide was developed in collaboration with LifeCenter Organ Donor Network (Cincinnati, OH) to offer chaplains a framework for the best possible course of action when they provide spiritual care to family members of patients who are potential vital organ donors. Some organ procurement organizations (OPOs) may want to control the donation process. They are thus hesitant to invite in—let alone collaborate with—any “outsiders” who they believe might undermine the likelihood of procuring vital organs. So how should a chaplain respond when ministering to potential vital organ donors and their families? Should they speak with family members about donation? What should they say? Do OPOs want chaplains to speak with family members? Should there be limits to these conversations? This can be a touchy area, because vital organ donation necessarily entails the death of the patient. This makes the relationship between chaplains and OPOs sometimes strained.

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Endocrine Considerations of the Pediatric Organ Donor

Journal of Pediatric Intensive Care ◽

10.1055/s-0036-1583286 ◽

2016 ◽

Vol 05 (04) ◽

pp. 205-212

Author(s):

Ronish Gupta ◽

Sonny Dhanani

Keyword(s):

Thyroid Hormone ◽

Diabetes Insipidus ◽

Organ Donation ◽

Organ Dysfunction ◽

Arginine Vasopressin ◽

Organ Donor ◽

Organ Donors ◽

Control Mechanisms ◽

Hormonal Therapies ◽

And Function

AbstractPatients determined to be neurologically deceased exhibit potentially harmful changes in various endocrine pathways due to disruptions of the body's neurohormonal control mechanisms. These deviations from endocrine homeostasis lead to hemodynamic, metabolic, and immunologic aberrations that are associated with reduced graft procurement and function for the purposes of organ donation. Existing literature has attempted to describe the pathophysiology that associates disruptions in endocrine pathways with organ dysfunction, both to increase understanding and to identify strategies to support the donor. For example, diabetes insipidus due to arginine vasopressin deficiency is commonly encountered, and should be anticipated. The significance of abnormalities in other pathways such as those involving cortisol and thyroid hormone is less established; however, there is increasing support for treating potential organ donors with combined hormonal therapies. While there are published documents aimed at guiding management of organ donors in general, many controversies exist and pediatric-specific literature is scarce. This article aims to review several of the important endocrine-specific aspects of managing the neurologically deceased organ donor, with an emphasis on pediatrics where information is available.

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An In-House Coordinator Program to Increase Organ Donation in Public Teaching Hospitals

Journal of Transplant Coordination ◽

10.1177/090591999800800109 ◽

1998 ◽

Vol 8 (1) ◽

pp. 40-42 ◽

Cited By ~ 2

Author(s):

Hermione Sullivan ◽

Debra Blakely ◽

Kimberly Davis

Keyword(s):

Organ Donation ◽

General Hospital ◽

Medical Management ◽

Organ Donor ◽

Teaching Hospitals ◽

Fiscal Year ◽

Organ Donors ◽

Consent Rate ◽

Level 1 ◽

Suitable Potential

The organ donor referral rates at Ben Taub General Hospital, a level 1 county trauma facility in Houston, Tex, were in the high 90s from 1993 through 1996. However, organs were procured from only 25% of those potential donors who were medically suitable. LifeGift Organ Donation Center identified two issues concerning the hospital's organ donor referrals: early medical management problems and a low consent rate. The hospital and LifeGift developed an in-house coordinator program along with specific protocols that have markedly increased the quantity of organ donors. In fiscal year 1994, 15 organ donors were recovered; in fiscal year 1995, following the implementation of the program, 25 organ donors were recovered. In fiscal year 1996, 39 organ donors were recovered. The in-house coordinators' consent rate was 72% of medically suitable potential donors. Early referrals for evaluation contributed to these successes.

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Organ Donation and the Ars Moriendi

The Linacre Quarterly ◽

10.1177/0024363919874591 ◽

2019 ◽

Vol 86 (4) ◽

pp. 327-334

Author(s):

Stephen Doran

Keyword(s):

Organ Donation ◽

Human Person ◽

Organ Donor ◽

Third Party ◽

Organ Donors ◽

Potential Organ Donor ◽

Ars Moriendi ◽

Dying Patients ◽

Donation Process ◽

The Impact

Organ donation is rightly understood as a gift that is a genuine act of love. Organ donation as an act of love requires it to be an act of freedom that honors the integrity of the human person who is in the process of dying. However, the process of organ donation, by necessity, inserts a third party of interest whose primary aim is to assist someone other than the dying person. Caregivers can become “organ focused” instead of “patient focused.” The procurement of organs potentially results in the commodification of the potential organ donor. Furthermore, death is not a momentary event but rather an ontological change in the person where the union of body and soul becomes divided. This Catholic understanding of death is important to assess the impact of organ donation on the process of dying. Family members of organ donors often have traumatic memories associated with the organ donation process, potentially overshadowing the ars moriendi—the art of dying. Summary: While organ donation is an act of love, the donation process can be distraction from the care of the dying patient, who may be treated differently than other dying patients who are not organ donors. A Catholic understanding of death is helpful in assessing the impact of the organ donation process.

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Safety and Biovigilance in Organ Donation (SAFEBOD): Protocol for a Population-Based Cohort Study (Preprint)

10.2196/preprints.18282 ◽

2020 ◽

Author(s):

Brenda Rosales ◽

James Hedley ◽

Nicole De La Mata ◽

Claire M Vajdic ◽

Patrick Kelly ◽

...

Keyword(s):

Health Outcome ◽

New Zealand ◽

Data Collection ◽

Organ Donation ◽

Perceived Risk ◽

Organ Donor ◽

Outcome Data ◽

Transmission Risk ◽

Data Sets ◽

Organ Donors

BACKGROUND Tension lies between the need to increase access to organ transplantation and the equally urgent need to prevent inadvertent transmission of infectious diseases or cancer from organ donors. Biovigilance, or the evaluation of potential donors, is often time-pressured and may be based on incomplete information. OBJECTIVE The Safety and Biovigilance in Organ Donation (SAFEBOD) study aims to improve estimates of infection and cancer transmission risk and explore how real-time data access could support decision-making. METHODS We will link existing donor referral, actual donor, recipient, and health-outcome data sets from 2000-2015 in New South Wales. Organ donor data sets will include the Organ Donor Characterizing Risk-Profile of Donors Study, the National Organ Matching System, the Australian and New Zealand Organ Donor Register, and the Australian and New Zealand Living Donor Kidney Register. Recipient data sets will include the Australian and New Zealand Dialysis and Transplant Register, the Australian and New Zealand Cardiothoracic Register, the Australian and New Zealand Islet and Pancreas Register, and the Australian and New Zealand Liver Transplant Register. New South Wales health outcome data sets will include HIV and AIDS Notifications and Surveillance Data, the Notifiable Conditions Information Management System, Admitted Patient Data Collection, Emergency Department Data Collection, the Central Cancer Registry, and the Cause of Death Data Collection. We will link organ donors to transplant recipients and health outcomes data sets using probabilistic data-matching based on personal identifiers. Transmission and nontransmission events will be determined by comparing previous cases in donors and posttransplant cases in recipients. We will compare the perceived-risk at referral with the verified risk from linked health outcome data sets and the odds of cancer or contracting an infectious disease in organ recipients from donors based on their transmission-risk profile and estimate recipient survival by donor transmission risk group. RESULTS Data were requested from each of the listed registries in September 2018, and data collection is ongoing. Linked data from all listed data sets are expected to be complete in September 2020. CONCLUSIONS The SAFEBOD study will overcome current limitations in organ donation by accessing comprehensive information on referred organ donors and recipients in existing data sets. The study will provide robust estimates of disease transmission and nontransmission events based on recent data. It will also describe the agreement between perceived risk estimated at the time of referral and verified risk when all health outcome data are accessible. The improved understanding of transmission and nontransmission events will inform clinical decisions and highlight where current policies can be revised to broaden the acceptance of deceased donors. CLINICALTRIAL INTERNATIONAL REGISTERED REPORT DERR1-10.2196/18282

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Autonomy, trust and ante-mortem interventions to facilitate organ donation

Clinical Ethics ◽

10.1177/1477750918772264 ◽

2018 ◽

Vol 13 (3) ◽

pp. 143-150 ◽

Cited By ~ 2

Author(s):

Sarah-Jane Brown

Keyword(s):

Organ Donation ◽

Organ Donor ◽

Accurate Information ◽

Organ Donors ◽

Legal Problem ◽

Policy Makers ◽

Sense Of Security ◽

The Uk ◽

Future Consequences

Over the last few years, policies have been introduced in the UK that identify and treat patients as potential organ donors before death. Patients incapacitated due to catastrophic brain injury may now undergo intensive ante-mortem interventions to improve the chances of successfully transplanting their organs into third parties after death. The most significant ethical and legal problem with these policies is that they are not based on the individual’s specific wishes in the circumstances. Policy-makers appear reluctant to inform potential registrants on the Organ Donor Register about ante-mortem donor optimisation procedures and to provide an opportunity to record specific wishes in advance. They are reliant on blind trust in the organ donation programme, which as I argue in this paper, presents significant risks for the achievement of its aim of securing an adequate supply of organs for transplantation. I argue that informed trust, based on accurate information about the future consequences of registration, is a more stable and enduring form of trust in the long term and would provide that sense of security in one’s expectations that often appears to be missing in relation to organ donation.

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