Consent for organ donation: a case study in the light of bioethicsAbstract
Fewer donations are being made in Brazil to meet the growing organ demand. Organ donation in Brazil reached an average of 53% consent. However, hospitals in Paraná have reached a level of 94.2%. What reasons could be given for these levels? Accordingly, this study aimed to understand the causes involved in decision-making to donate organs. The methodology used was qualitative based on a case study. Data was collected at a hospital in Toledo, a city in Paraná, through documentary research and semi-structured interviews with two distinct groups: professionals responsible for the family approach to donation and five families consenting to donation. The search for data was restricted to the period between 2015 and 2023. Data analysis used Bardin’s content analysis. The results were organized into four categories in the first group, and two categories in the second group, suggesting that aspects linked to bioethical references present in the interview, such as beneficence and autonomy, contribute to the emergence of high rates of family consent for organ donation in the hospital studied. It is recommended for future research to test successful interview models to reverse the current organ donation rates in Brazil.
Key words Bioethics; family; interview; organ; donation
INTRODUCTION
‘Donate Organs and Save Lives!’. A phrase like this one is often replicated in the media to increase organ procurement rates in Brazil, which are still low. According to the Organ Procurement and Transplantation Network (OPTN) (data up to October 2021), more than 100,000 people are on the organ donation waiting list in the United States, while the number of actual donors is much lower, with around 39,000 transplants carried out in 2020.
In Europe, there is variability in donation rates. Spain stands out as a European country that leads the world in organ donation. Donation rates of 46.9 donors per million people in Spain are statistically different from the averages and significantly lower in other European countries (Coelho & Bonella 2019).
In Brazil, according to the Brazilian Organ Transplant Association (ABTO – Associação Brasileira de Transplante de Órgãos), in 2020, the year the pandemic began, the country had a rate of only 16.3 influential donors per million population (pmp), that is, a third of the Spanish average. The population census by the Brazilian Institute of Statistics (IBGE – Instituto Brasileiro de Geografia e Estatística) (2022) recorded a population of 203,080,756 inhabitants, highlighting the critical need to increase the organ donation rate to reduce the queues waiting for an organ.
This concern with organ donation has been a matter in the Senate, which analyzes proposals related to presumed consent donation to increase the number of effective donor rates (Senado Notícias 2021). Presumed consent is when, during life, a person has the option of choosing to consent (or not) to their organ donation.
On the other hand, historically, Brazil’s population has rejected the so-called “presumed consent.” In that form of consent, the option to donate was compulsory unless otherwise specified (Etheredge 2021). This legislation caused outrage among Brazilians, resulting in a reversion to the current consent of family members after death (Matesanz & Domínguez-Gil 2019).
In Brazil, the reduced number of donations may be directly affected by logistical failure when executing the stages of the journey to donate organs. All stages, from initial care to support during mourning, are essential to obtaining consent. Such procedures can transform a potential donor into an effective donor (Santos et al. 2012a).
In the current reality, the main reason for low organ donation procurement is family refusal, which remained at 37.2% in 2020. In 2014, a study conducted at the Federal University of Rio Grande do Norte (UFRN – Universidade Federal do Rio Grande do Norte) (Natal) showed that, of the 65 cases of potential donors identified and notified, 27.7% donated organs and tissues. This shows the reality of Brazilian society in many states (Freire et al. 2014).
On the other hand, Paraná and Santa Catarina states stand out with organ donation rates above the national average. According to ABTO, in 2023, Paraná recorded a reduction in family refusal to donate organs, presenting the highest number of effective organ transplant donations, followed by Santa Catarina (Paraná 2023).
Historically, national averages of family refusal to donate organs have remained relatively stable over the last ten years at around 44%. Comparatively, the state of Paraná had a reduction in family refusal, reaching the current 27%.
The ability to “convert patients diagnosed with brain death into organ donors” is considered a marker of qualified care by a hospital (Rech & Rodrigues Filho 2007). Some indices or rates are used to stratify the performance of staff involved in the process. “Reference rate” corresponds to the number of families for which donations are requested divided by the number of potential donors. “Consent rate” corresponds to the number of families that agree to donate divided by the number of families proposed to donate. “Conversion rate” corresponds to the number of actual donations divided by the number of potential donors (Sheehy et al. 2003).
Obtaining high hospital organ donation rates means gradually contributing to reducing waiting lists for organs and family anxiety as the longevity of hopeless chronic patients who long for a “breath of life” increases.
Qualitative assessments on the flowchart for organ donation are necessary in favor of improvements. In Brazil, a study on the subject was carried out by the Federal Court of Accounts (TCU – Tribunal de Contas da União) in 2006 entitled “Assessment of the Organ and tissue donation, procurement and transplantation program” (Freire et al. 2014). Our study assesses the quality of the approach to family members of potential organ donors. Therefore, the “family interview” item must be among the criteria for assessing the quality of the family approach. A family interview is considered one of the most complex organ and tissue donation stages. It is a meeting and gathering between nominated professionals and family members of potential organ donors. Immediately upon confirmation of death, the interview will provide informational aspects such as communication of death, emotional support, and information about organ donation (Knhis et al. 2021).
Although multiple factors are involved in the absence of family consent for organ donation, the interview is considered by several authors to be the preponderant cause (Santos et al. 2012b). Even in Spain, a country with the highest donation rates worldwide, family interviews are still considered complex and limiting for increasing the number of donations (Santos & Massarollo 2011).
What causes high consent rates for organ donation observed at “Hospital Bom Jesus”? Based on this research question, this study aimed to understand the causes and factors involved in high rates of family consent for organ donation observed at Hospital Bom Jesus, Toledo, Paraná, in the light of bioethics.
MATERIALS AND METHODS
This study uses a qualitative, exploratory, and descriptive methodology. Its guiding question is: What causes high rates of family consent for organ donation observed at a philanthropic hospital in Toledo? The case study is the ideal method for answering this question.
Case study strategies
According to Yin (2015), a case study focuses on investigating contemporary phenomena that occur in a particular location, with their peculiarities, to unveil what is behind the nuances linked to said fact/phenomenon. Gil (1995) considers that four phases must be followed for a study to have a satisfactory outcome. A case study allows flexible structuring to be carried out but is guided by assumptions such as unit-case delimitation, data collection, data selection, data analysis/interpretation, and report preparation. Defining the study’s object, collecting data differently, analyzing data based on answering the target question, and preparing an opinion are essential (Yin 2015).
For Yin (2015), interviews are one of the most important sources for a case study, as they ensure the absence of rigidity, which is typical of a case study. It allows for the maximization of answers. There is spontaneity in answers and argumentation of facts.
Hence, we used semi-structured interviews as the basis for the research strategy and inspiration for investigating this case study. Then, we interviewed two people directly responsible for the family approach to obtaining family consent for organ donation. Subsequently, we interviewed five families consenting to organ donation. No interviews were carried out with family groups that refused to donate organs.
Research locus
Hospital Bom Jesus is in Toledo, the state of Paraná. This philanthropic and private hospital assists most of the population attending the Unified Health System (SUS – Sistema Único de Saúde). It collects organs, which will be transferred for transplantation in other hospitals. Hospital Bom Jesus’s coverage area concerns a population of 400 thousand inhabitants, comprising the 20th Health Region. Between 2015 and 2023, there were around 186 reports of cases of brain death for organ donation. The population covered by the Health Region lived in the municipalities of Assis Chateaubriand, Diamante d’Oeste, Entre Rios do Oeste, Guaíra, Marechal Cândido Rondon, Maripá, Mercedes, Nova Santa Rosa, Ouro Verde do Oeste, Palotina, Pato Bragado, Quatro Pontes, Santa Helena, São José das Palmeiras, São Pedro do Iguaçu, Terra Roxa, Toledo and Tupãssi. Located in the Western Macroregion, the 20th Health Region has an estimated population of 400 thousand.
Data collection process
The research took place in three stages. In the first stage, hospital data was collected on consent rates for organ donation obtained from 2015 to 2023; that is, documentary research was carried out. In the second stage, data collection was carried out through interviews with two people directly responsible for the family approach to obtain family consent for organ donation. In the third stage, data was collected through interviews with five families consenting to organ donation. Each family group was composed of a representative chosen at random but who participated in the consent process. All interviews were recorded and transcribed for subsequent analysis.
Concerning data collection, the first stage used an active search for data in the hospital’s spreadsheets and tables, showing its reality regarding conversion into donations. The hospital database was searched for spreadsheets and tables showing data to prove the high rates of consent reported. Patients who were not eligible for donation were discarded (in these cases, families were not offered donations). In order to analyze the high conversion rates, only cases with an indication for donation (eligible cases) and donation consent (interview/conversion rate) were examined. Cases ineligible for donation and for which families were not offered organ donation were excluded from the sample.
Research participants were initially contacted personally to collect data in the second and third stages. The researcher then reaffirmed the research’s importance to the participants, emphasized its purpose, and took the opportunity to obtain confirmation from the researchers that the interviews would take place. Subsequently, a new contact was made via telephone to schedule the interviews. Considering that the research above involves human beings, the project of which this manuscript is part was sent to the Pontifical Catholic University of Paraná (PUCPR – Pontifícia Universidade Católica do Paraná) Research Ethics Committee. We followed all the recommendations of the Brazilian National Health Council (CNS – Conselho Nacional de Saúde) ‘s Resolution 466/12.
All participants signed the Informed Consent Form (ICF), safeguarding participant anonymity. Before signing, we asked participants about their acceptance to participate in the research and explained the interview and any questions to be answered. They agreed to participate and signed the ICF. They were duly informed of their right to refuse. In all groups interviewed, there was no distinction regarding gender.
In the second stage, data collection was carried out through interviews with those responsible for the family approach at the time of organ donation by two nurses who were members of the Hospital Bom Jesus Intra-Hospital Commission for the Donation of Organs and Tissues for Transplantation (CIHDOTT – Comissão Intra-Hospitalar para Doação de Órgãos e Tecidos para Transplantes). These professionals, a 39-year-old and a 43-year-old nurses (at the time of the interview), were responsible for the Family interview at the hospital under study. They are healthcare professionals with roles other than carrying out interviews. Their dedication is not exclusive. These professionals’ technical training went through and was processed by the Paraná State Transplant Center. Some partnered with our institution, others with the Ministry of Health via Proad and Hospital Moinhos de Ventos, Porto Alegre. Added to these were those designed and developed by Hospital Albert Einstein with realistic simulation in the family interview process. The interviews with professionals were formal, with a semi-structured script, recorded and transcribed for later analysis. The researcher carried out answer transcription. Six questions were asked to professionals about how they conduct family interviews, the role of interviews, interviewers’ skills, ethics, and the drivers of donation. The interviews were recorded and transcribed for further analysis.
Five family members who had previously consented to organ donation were interviewed in the third stage. The age range of this group of interviewees varied from 26 to 44. We included the last five consenting families registered in hospital data so there was no selection bias. No other criteria were applied for selection and recruitment, such as gender, age, or social class. The interviews were also recorded and transcribed for later analysis. No interviews were carried out with families who did not consent to organ donation. In these cases, there was a lower degree of interaction between the family and the team that assisted the deceased, preventing the interview.
Analysis procedures
The content analysis method, as proposed by Bardin 2011, was used to analyze the data collected in the interviews. Bardin’s set of techniques, widespread in academic circles, ensures that the messages hidden between the lines are assessed. In addition to traditional language, body language is observed. The researcher’s subjective interpretations are added but must follow methodological rigor to be valuable (Bardin 1977, Cavalcante et al. 2014).
Content analysis is a research method for systematically and reliably interpreting texts (or other artifacts). Bardin (1977), in his classic work “Content Analysis”, outlined guidelines for carrying out data analysis, which is gaining value in current scientific times. These guidelines are widely used in qualitative studies and are outlined in several stages, such as pre-analysis, material exploration, treatment of results, inference and interpretation.
In pre-analysis, the researcher prepares the data for analysis so that it can be easily handled. This stage is for a general reading of selected material or transcribed interviews. Material exploration is the stage where data is systematized to propose units and categories, ensuring data objectivity and research validity. Text clippings are exhaustively coded into record units (Silva & Fossá 2015). In other words, coding is an essential phase in Bardin’s (1977) content analysis. In the last stage, the researcher interprets the results and draws the expressed and latent contents in the collected material, drawing conclusions and inferences about the phenomena under study (Bardin 1977).
Based on the above, analyses were carried out following the proposed phases. Once the interviews were carried out, they were transcribed and filed in Microsoft Word® (first phase), totaling 15 pages of transcribed material from the interviews. From the second phase onwards, data was organized, where the appropriate coding took place, respecting an ordinary sequence that considered the order in which the interviews were carried out, that is, I1 for the first interview, and so on (I2, I3, I4… I7). Then, clippings were carried out based on convergence with content; soon after, they were recorded separately. The stage that corresponds to the establishment of analytical categories follows the sequence. To formulate this stage, Bardin’s (1977) principles were considered: mutual exclusion between categories, category homogeneity, relevance that concerns the non-distortion of the message conveyed, objectivity/fidelity in understanding, clarity and productivity.
Thus, we formulated the categories that, for Silva & Fossá 2015, are constituted by synthesizing revealed meanings.
RESULTS
To better code the data, units of meaning were grouped according to similar topics to maintain homogeneity. We arranged the information obtained after analyzing the units of meaning, thus respecting the content analysis objective. From 2015 to 2023, conversion rates into organ donation ranged from 88% in 2017 to a maximum of 100% in 2021, with an average of 94.2%, as Table I demonstrates.
After data collection (second and third stages) and analysis of the semi-structured interviews of the two discriminated groups (family interviewers and donor families), Figures 1 and 2 were created:
After data collection (second and third stages) and analysis of the semi-structured interviews of the two discriminated groups (family interviewers and donor families), units of meaning were extracted and grouped into categories within each group studied. Four categories emerged from the interviews with those directly responsible for family interviews, as shown in Table II. Two categories emerged from the interviews with the five family members who consented to organ donation, presented in Table III.
Subsequently, thematic categories and their respective units of meaning were presented by clippings of statements from interviews collected from professionals and consenting families.
Results of interviews with professionals
The four categories extracted in data analysis were followed by their thematic units and statements, which enabled the following findings.
Approach strategies
This thematic category was structured based on two units of meaning to consider all the facts listed by interviewers that favor success in consented donation. It was observed that there are elements related to interview in “Approach strategies”, the first thematic category that answers the research question about aspects present in the interview that seem to favor positive results in donation.
It was found that approach strategies need to be chosen carefully. Professionals’ statements allow us to identify a humanized approach and promote attitudes based on virtue ethics of benevolence, empathy and compassion as units of meaning.
Humanized family approach
A humanized approach was identified through statements demonstrating this concern, given the fragility of the family situation. This concern is verified by ensuring that the family understands the importance of the problem. Thus, they treat this issue sensitively throughout the process.
I6) [...] So there we start treating the family in a humanized way, treating them with respect, not that the other family members are any different, so it is like that with everyone [...]
I6) [...] They hoped that she was a kind person, that she would have liked to have helped others, that she had helped someone her whole life. If someone needed something, she could have helped. [...] This is the link to really help close that person’s life cycle.
I7) [...] humanization is another significant factor contributing to a favorable outcome.
According to the interviewer, humanization is inherent to their family approaches. He realizes this is the only way to raise awareness about the donation process.
Within the approach strategies, professionals understand how fundamental it is to take advantage of the uniqueness of the situation to promote ethical attitudes, as evidenced in the second unit of meaning.
Promotion of attitudes based on virtue ethics
This core of meaning was identified by the emphasis that professionals place on presenting the topic as a gesture that characterizes moral virtues, such as prudence (care when revealing a fact), solidarity (considering others’ interests but maintaining their close interests) and generosity (promotes beneficial action for the benefit of others). This can be observed in the explanations provided to families about what the act of donating represents:
I6) [...] we try to show and explain to them that their organ there is essential, that there are people who need that organ from that family to have a better quality of life [...] the family has a gift in their hands, which they can give for someone [...] this gift is the organ, that family member’s organ [...]
I7) [...] that loved one no longer legally disposes of life scientifically, and they can bring other people to life upon family members’ authorization.
I6) [...] the vast majority of families choose to say yes because they understand that they will be helping and contributing to the life of someone who needs that organ...
Professionals highlight the importance of clarifying the meaning and value of ethical virtues during the interview. They point to humans’ need for relationships based on solidarity with others’ suffering as a value to be cultivated by humanity. At that moment in life, this family is being invited by the circumstances brought by life to demonstrate an attitude of solidarity and generosity.
I6) [...] we try to show that we are four times more likely to need an organ than to be donating an organ. Thus, there is a greater chance of standing in line to need the organ that affected one of our family members than of us being able to provide this organ. If it were the other way around? If I needed this organ, right?
I7) [...] I believe it puts the family on the other side of the situation. We must ask the family, “If it were the other way around, if it were your loved one or family member who needed an organ, what would that situation be like?”
Valuing family autonomy in the decision-making process
In this thematic category, we observed the practice of the bioethical principle of autonomy, valued as the basis of the decision-making process. This can be perceived by the two units of meaning detailed below, such as time spent on the interview and freedom of thought. This ensures a consensual decision by the family and, simultaneously, family accountability in making a conscious decision in the face of the situation.
Interview without time limit, with freedom of thought, and based on family consensus
This core of meaning concerns freedom of time and thought offered to families. A family “free to think” can use the necessary wisdom to make better decisions. Professionals reported in their speeches excerpts that emphasize this idea:
I7) [...] We must be calm and have time to interview to convey this situation to the family. The interview does not have an exact time, and it has happened that families arrive and make a favorable decision to donate and understand the process. However, in just a few cases, some interviews took up to 10 hours, allowing the family to ask questions and decide [...].
Autonomy was also identified through respect for family beliefs and values.
I7) [...] We also need to respect families’ religions, regardless of their religion; this is very important…
I6) [...] also in the last one, we had to wait another hour for another brother of the patient’s son to arrive so we could say the answer, so we waited for everyone to [...]
The family’s autonomy is also valued by waiting for a consensual decision on the part of the family members. Several family members are allowed to be present during the interview, ensuring that decisions are made together and there are no doubts or hesitations afterward. In their speeches, the professionals describe passages that emphasize this idea:
I6) [...] We try to have all family members present at this interview because sometimes the decision is not just made by one family member; sometimes it is made by two, three, four, or five people linked to that patient. So, if there is a gap, they will want to come out and ask questions. Then it is better if we have everyone there and everyone understands the process.
Decision-making autonomy is based on the possibility of conscious and responsible choice, not on obligation.
The family is aware that if they do not choose to donate, there will be no loss of care and that donating is an option, not an obligation. Below is a record of excerpts from interviewees’ speeches that exemplify:
I7) [...] then, we give the family the possibility to decide whether they agree with the organ donation process or not [...] subsequently, we explain the possibility that the family can participate in the organ donation process. Then, we end up asking whether the family wants to go through the organ donation process. If there is a negative answer or refusal, at the first moment, we try to identify the reason, clarify any questions, and give the family time to sleep on it.
They showed that decision-making autonomy is based on the possibility of a conscious and responsible choice, not on the moment’s emotion or the pressure of some imagined obligation. This is what professionals state:
I7) [...] So these experiences that we have, when we convey them to the family and transfer this responsibility, also contribute to a favorable outcome [...], but I believe that the main trigger is when we transfer this responsibility to the family [...].
I6) [...] so when we say that they now have a decision to make in their hands, that they can help someone who needs that organ [...]
Clear communication about brain death protocol
This thematic category shows the relevance of passing on information about brain death protocol so that it is not obscure to the family. The more precise the protocol stages are, the more the family will have a correct perception of the process magnitude. Two units of meaning make up this category: “Clarification on national protocol standardization and feedback from families” and “Clarification of care information until donors’ death”.
Clarification on national protocol standardization and feedback from families
This core of meaning shows the importance of systematizing brain death protocol and the need to clarify this concept to the family.
I6) [...] all the stages of the protocol itself, such as why it is done, because it is something that we did not define, it is something national that exists. The same protocol at the hospital is carried out here in Cascavel and São Paulo [...]
In addition to clarifying the protocol in detail, there is a constant search for the family’s level of understanding regarding brain death and organ donation processes. Professionals optimized linguistic sequences that standardized this idea:
I7) [...] we try to establish feedback with the family and then we allow the family to decide whether they agree with the organ donation process or not [...]
I7) [...] in the second moment, we try to ease their concerns by explaining the process again, and it needs to be very clear to the interviewers if the family truly understands the process and if their doubts were clarified...
Clarification of care information until donors’ death
This core of meaning concerns the information provided about complete care until the outcome of death, which will be extremely important for clarification. Professionals mention some of these situations in their speeches:
I6) [...] they first say no, but after they understand the entire process we have been explaining since before the protocol began, they reverse that “no” to “yes.” And we always try to explain the whole process to the family and ask if they understood the brain death protocol process, what led that patient to have the injury, leading them to die [...] which is cephalic death protocol that led the family member to die [...]
I7) [...] we are not here to judge anything but to clarify all situations involved in the process [...]
Internal staff cohesion and family credibility in healthcare staff’s work
This category reinforces the importance of the family having confidence in the healthcare staff’s work. This need is even more significant the more complex the care is. This category comprises two units of meaning related to the family’s perception of the service offered and the guarantee of professional technical training.
Staff alignment in the organ donation process
In this nucleus of meaning, the alignment of the team in caring for the family results in the family feeling welcomed, which is fundamental for a positive result regarding the donation. This is evident in the following statements by professionals:
I7) [...] I believe that the main thing is credibility and trust [...] the Hospital Bom Jesus multidisciplinary staff provides this [...]
I7) [...] trust in the Hospital Bom Jesus multidisciplinary staff is an essential factor contributing...
I7) [...] The process and ethics are complementary. I believe that all this is related to trust. We need to demonstrate ethics to this family from the moment the patient is identified to admission; this process needs to be ethical for the family to believe in it.
I7) [...] but the family is welcome and has credibility in our service [...]
I7) [...] interviewers need to know how to listen and interpret... with involvement too, with family feelings, they need to be human [...]
According to professionals, whenever a donation process is carried out with ethical principles, trust is generated in the family, who believes in the donation process as altruistic.
Guarantee of professional staff technical training
This core of meaning concerns the importance of healthcare staff ensuring professional technical training so that families feel that they are being welcomed by staff with technical and human competence during the donation process. Professionals state:
I7) [...] the family is satisfied with all the professionals involved in the process and ends up saying yes to the treatment they received here at Hospital Bom Jesus.
I7) with working conditions provided by the institution to these professionals because everyone plays a vital role in the system, and everyone does their work in an exemplary manner. [...] I believe the staff is dedicated. We realize the staff within the institution carries out the processes professionally... staff training from initial care to organ procurement. Several professionals involved are highly technically and scientifically qualified people [...] the technical training of the staff in all processes is differentiated...
According to professionals’ perceptions, the results show that staff commitment to service, clarifying doubts, practicing ethical attitudes, and promoting autonomy, compassion, and empathy drive donation.
Results of family interviews
The two categories extracted from data analysis from the interviews with the five families are followed by two thematic units and statements that made possible the findings presented below.
Desire to perform an act of kindness
This category demonstrates the emergence of empathy and an attitude of compassion by families as an act of kindness, ensuring that it is the best thing they can do.
Emerging empathy
When asking families, “What was it like for you to decide to donate organs?” it was observed that they expressed empathy, as can be seen in these statements:
I2) [...] although my father never commented on this possibility of donating, I believe he would not be against it if the situation were reversed. He would donate... he was a good person, loved by everyone, and always wanted to help...
I3) [...] I cannot say whether my father would have liked to donate, but I believe that, as he was perfect, he would have done it for someone else...
I5) [...] it would be unfair to these people not to donate [...] she would also think so [...]
I4) [...] we put ourselves in the other person’s shoes, right [...] and, if we needed an organ to save someone in our family, right? Or even my mother-in-law [...] as was our case [...]
Emergence of an attitude of compassion
This core of meaning concerns the unfolding of families’ empathy by being sensitive to the needs of a recipient who needs a donation. Empathy makes families take the stage of compassion based on a desire to contribute to something that can alleviate recipients’ suffering. Families express themselves this way:
I1) […] so he [donor’s name] can help save five lives [...], that is what comforts us [...] his life could not be saved, but he helped save others’ [...]
I2) [...] anyways, it is thought that it was an act of love and that other lives were saved. It is moving on [...] we always try to think that our father would still be alive in someone else.
I3) [...] I remember that [I] was very little when I saw an organ donation campaign on television for the first time; I thought it was such a beautiful act, and I grew up convinced that I would donate my organs one day [...]
I3) [...] I put myself in the shoes of the family who was waiting for an organ [...] what it would be like for them to receive the news that it had worked [...]
I3) [...] organ donation is an act of love; it is the last act we can do as human beings, and I do not see why we should not donate.
I5) [...] because we knew that many people need it and spend years waiting, and what comforted us, in a way, was that her heart was not still and that she needed to leave so that others could live. It was with this in mind that we donated [...] many people die, and there are many waiting for an organ too [...]
Staff trust
This category indicates that the approaches carried out by professionals result in trusting the staff that provided care to potential donors.
Welcoming staff
This core of meaning reaffirms the staff’s strategy in a humanized approach, as the family feels welcomed by the staff. Families express themselves this way:
I2) [...] after much discussion with the medical staff, who supported us in the process, we obtained general consent [...].
I4) [...] so we hope that this is also one of the main factors for Toledo to be like this, for it to have a higher donation rate, because the team is wonderful, from the nurses to the doctors to everyone. We were treated very well, all the doctors... there was nothing to complain about. We were treated very well [...].
I5) [...] the guy who helped us with organ donation, I do not remember his name, was super kind and helpful at the time, and that was super important for us too [...]
Process clarification by the staff
This core of meaning concerns the detailed information provided by the staff. This includes everything from initial care to the outcome of death.
I1) [...] the staff helped us a lot with the decision. They were always by our side [...] and answered all our doubts. This helped a lot [...]
I2) [...] the staff informed us and answered questions, and this calmed us down [...]
I4) [...] and I think hospital staff support leaves no doubts, right? It is all very well explained [...]
I4) [...] so one of the factors that helped us a lot was staff support, the doctors who came to talk to us, and the nurses, right? They came to talk and answered all our questions right [...]
I5) [...] they explained to us the importance and all the procedural details [...]
In short, we can describe the family’s perception of care support provided by the staff. It was also evident that families were aware of the entire course of care at the hospital.
DISCUSSION
Donation and transplantation constitute a complex process that takes place after several stages considered essential, such as identifying and maintaining potential donors, confirming brain death, approaching the family, removing organs and tissues, distribution and, finally, transplantation. With this logistics, we sought to obtain the process by which a person grants, through legal consent, their organs for transplantation. However, potential donor family consent is one of the most significant limitations of organ donation and transplants in Brazil. Therefore, the ethical aspects of approaching potential donor families are fundamental (Victorino & Ventura 2017). The question is: what could be interfering so that the family does not consent to organ donation? This is where consent reemerges as an ethical and legal topic. Could it have something to do with the doctor/patient relationship?
For years, the doctor/patient relationship was based on a contractual relationship in which doctors provided care to follow technical premises, whereas patients dictated personal morality. There was a need to create a model in which professionals could achieve strategies to promote patient/family autonomy. The “beneficence-in-trust” model, as proposed by Pellegrino & Thomasma (2018), assumes that any relationship between doctor and patient must be based on trust, which is the driver of attitudes that benefit both parties. That said, we imagined that the ideal model promotes trust in the doctor/patient relationship. This will only be achieved with the necessary dialogue between parties and as the relationship deepens to moral levels (Pellegrino & Thomasma 2018). Seeking mutual beneficence and based on trust, the staff/family relationship promotes autonomy. This is the principle of the “beneficence-in-trust” clinical relationship (Cruz 2014). The author discusses these principles by talking about the doctor-patient relationship. These same principles can be applied to the health staff-family relationship.
The “beneficence-in-trust” concept presupposes the resumption of virtue ethics in which any break in the bioethical bond in the clinical relationship between staff and family can generate unnecessary conflicts and anguish (Cruz 2020).
In addition to the importance of a trust-based relationship, adequate information must be instituted by establishing this trusting relationship for family consent for organ donation. Lack of clarification on aspects related to organ donation is a notable factor in refusals to donate. Furthermore, the lack of information for families makes them vulnerable and susceptible to manipulation by the staff, becoming unethical (Cruz 2014).
Santos et al. (2012b) identified gaps in national communication and education regarding brain death. Negative feelings regarding donation can be aroused if family members are deprived of information. Therefore, adequate information and support during and after donation are essential to face the situation (Silva et al. 2019). This adequate informational support, provided by the staff, can be highlighted when we analyze the word cloud generated during the interview with professionals. We observed that the “staff” prioritized the “family”, which was informed during the “interview” of the entire medical care “process” and “protocol”. The staff also provided space for “questions.”
Family information is so important that it must be transparent and objective in a language compatible with each subject’s understanding. An act can only be voluntary if we have the necessary information to legitimize it. On the other hand, information must be based on family welcoming (Victorino & Ventura 2017).
Some authors argue that how the health staff communicates with and welcomes donor families can significantly impact the overall donation experience (Zambelli et al. 2018). The results presented demonstrate this.
In addition to the need for adequate information on organ donation, raising public awareness regarding its importance is essential to increasing donation rates (Arshad et al. 2019). That being said, donor families were duly aware of the approach proposed by the Hospital Bom Jesus staff. This can be observed because, when we analyze the data on conversion rates into organ donation in the city of Toledo, we have consent averages above the national averages (94.2% versus 53%).
After analyzing the two groups and their respective categories, it can be seen how significant the positive impact generated on the family by donating was. This may include feelings of comfort, prolonging recipients’ lives through donation, or understanding donation as a gesture of love and life-saving. Moreover, the family’s understanding of the importance of developing ethical attitudes such as compassion became evident. Families consented to donation as they considered this act benevolent and necessary for humanization. This became evident during the word cloud analysis generated by interviews with family members. Terms such as “organ donation” and “help” (with greater emphasis) demonstrate the need for families to do good for others but also keep the focus on their personal needs by highlighting the word “father”. Thus, the gesture of solidarity is characterized.
As evidenced by Andrade & Goldim (2018), the virtue of solidarity permeated by generosity and compassion is necessary for donation. Practicing beneficence without committing neutrality towards others guarantees virtue ethics.
Family consent still has presuppositions combined with elements such as autonomy, the ability to consent, and voluntariness (donating as a measure of goodwill), among others. Informed consent is the freedom to make decisions, i.e., family self-determination. Autonomy concerns the ability to decide, whereas self-determination concerns the right to decide. Therefore, intact autonomy preserves the right to self-determination (Goldim 2015). By choosing not to donate, the family has the right to be informed again, opening the opportunity for further reflection, thus guaranteeing their power of self-determination. Pellegrino’s “beneficence-in-trust” model transfers the autonomy of decision-making from doctors to patients/families but maintains the mutual interrelationship in search of good as supremacy. Only the pursuit of beneficence will promote autonomy (Cruz 2014). Thus, the “beneficence-in-trust” model is based on family access to information so that they can make an informed decision. This approach values family dignity and autonomy to protect it from possible unethical aspects related to donation (Cruz 2014).
Still discussing autonomy, the Brazilian cultural and historical aspects make the desire to decide one of the population’s priorities. This became evident in 1997 when Brazil protocoled an opt-out system in which all individuals were considered organ donors unless they chose not to participate in donation (not to adhere to a particular proposition). This legislation caused outrage among the Brazilian population and was ignored by the healthcare staff, who continued to seek family consent (Matesanz & Domínguez-Gil 2019). The legislation was abolished entirely due to its unpopularity, according to Law 10,211 of March 23, 2001. Therefore, ethical approaches that enhance decision-making autonomy guarantee greater availability of donations. This can be verified in our series.
In addition to autonomy, there is a discussion on beneficence, which is doing good deeds for the benefit of others. The relationship between organ donation and beneficence is profound. Organ donation is an act of beneficence because it seeks to promote the greatest possible well-being and quality of life of other people, in this case, those in urgent need of an organ transplant. An individual can save or significantly improve another’s life through organ donation after death. Beneficence quality promotion by the Hospital Bom Jesus staff encouraged family members to donate organs more frequently.
In short, when we care for someone, becoming informed about and promoting their autonomy, we generate the trust necessary to base the ethics of “beneficence-in-trust”. This differs from the paternalistic attitude in medical care, in which professionals promote care based exclusively on their technical convictions but without prioritizing values and promoting the greater good for patients (Pellegrino & Thomasma 2018). Families that establish a trusting relationship with staff strengthen their autonomy in making necessary decisions and guarantee the principle of beneficence. We established the ethical tripod of trust, autonomy, and beneficence, which are fundamental for organ donation consent (Pellegrino & Thomasma 2018).
The Ministry of Health has invested in training staff to improve donation rates. There are obvious gaps, such as poor emotional support and lack of clear information, especially after a loved one is declared brain dead (Fernandes et al. 2015). It is necessary to reduce these gaps in order to promote social and family well-being.
The difference between Hospital Bom Jesus and other hospitals in terms of high consent rates for organ donation is that it provides a possible interview model with family members that demonstrates meeting current demand to optimize organ donation rates.
Each family is unique and faces its own set of emotions and challenges during this process, and the interview should be conducted in a way that respects it. Virtue ethics resurfaces in the contemporary world due to the loss of ethics in clinical care. Compassion, benevolence, justice and integrity are considered essential in clinical care and are shared by several authors (Cruz 2020). Virtue ethics reemerges as a response to a merely principlist view of healthcare practice. These are not just duties to be fulfilled but behaviors that must be introjected and used genuinely and autonomously (Goldim 2009).
Considering the essential items of an interview described above, a practical approach was taken: an interview was formulated based on bioethical values observed in the present study (Appendix).
CONCLUSIONS
We must pay attention to family consent rates for organ donation, which remain generally low in the country. Brazil is an example of having organized the world’s most extensive public transplant system. However, it faces problems and challenges that must be overcome, such as high family refusal rates.
Therefore, it is noteworthy when a place shows results that are contrary to those commonly found in the country, leading us to investigate the causes involved in the high rates of family consent for organ donation. Bioethical virtues such as compassion, empathy, autonomy, and beneficence were highlighted in team/family relationships and encouraged in the interview to guide families on organ donation, demonstrating that they were fundamental in propelling donation. Likewise, team support, clarifying the entire process, and providing the necessary support were essential for families to validate donations. These two causes were mainly related to the high family consent rates observed. The case study of Hospital Bom Jesus de Toledo and global results from Paraná and Santa Catarina allow us to estimate that it is possible to procure organs while maintaining the quality of care and with the proposal of a family authorization model. Returning to presumed consent would be a huge step backward.
Organ donation has a profound and varied impact, affecting the lives of organ recipients, donor families, and involved healthcare professionals. It is vital to continue research and advance our practices in this area because of its potential to save and improve lives. Therefore, interview models should be constructed that include bioethical references based on virtue ethics that can be applied with humanized approaches. Artificially replicated models, such as “artificial intelligence”, will never achieve the impact necessary to promote donation. They need to be, above all, humanized to meet their purposes.
ACKNOWLEDGMENTS
This article is part of a master’s thesis from the graduate program in Bioethics at PUCPR.
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Appendix. Ethical interview model proposal.
Hi, I am (my name), part of your loved one’s healthcare team. I understand this is a distressing and emotional time for all of you. Our staff is here to help support you through this process and try to make this time as smooth as possible. Our professionals have extensive experience in this area to help you. We are here to answer all your questions, concerns and queries. We want to ensure that you are comfortable with whatever decision is made. We understand that your loss is challenging and that managing grief is a highly personal process. Talking about organ donation may seem inappropriate, but we want to allow you to enable your loved one to help others. We provide services to many families like yours and always try to guarantee the necessary support. Donating is a very personal decision and can be one of the ways to create a lasting legacy for your loved one. We reinforce that this process will be guided by ethics and respect for all feelings involved. Our staff has the clinical competence and communication skills to guide this interaction with great respect. We consider it essential that you know that organ donation can save or improve many lives. Each donor has the potential to help up to nine people have a new chance of life. I understand you will need time to reflect on the first decision you share with us. We respect the fact that this is a decision that families need to make together. Attention and care at all stages of the process are fundamental for us. Finally, we would like you to consider the benefits of donating an organ to many people’s future. This act of generosity can transform the lives of many and create a ripple effect of kindness. Your gesture could represent a “gift of life” to another family and person. Consider this when deciding. We are here to answer any questions and help you make the best decision for you and your family at this difficult time. Thank you for considering this donation option.
Publication Dates
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Publication in this collection
25 Oct 2024 -
Date of issue
2024
History
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Received
7 Feb 2024 -
Accepted
12 Aug 2024
