Communication and Consent: Discussion and Organ Donation Decisions for Self and Family

doi:10.1016/j.transproceed.2012.10.021

Transplantation Proceedings

Volume 45, Issue 1, January–February 2013, Pages 10-12

https://doi.org/10.1016/j.transproceed.2012.10.021 Get rights and content

Abstract

Background

Organ transplantation is a significant medical advancement. However, number of individuals registering as donors and next-of-kin's refusal to grant consent are notable limitations on the availability of organs for transplantation. Therefore, investigation into factors that influence willingness to donate and consent decisions is warranted. We examined the relationship between attitudes and family communication in relation to consent decisions for self and family member organ donation (OD). Data were collected from students at an Australian university and individuals from the wider community (N = 267).

Method

Participants completed an on-line survey composed of questions relating to demographic information, questionnaires from previous research, and several single items relating to family communication and consent created specifically for the study. The main outcome measure was participants' willingness to consent to OD for themselves or for a family member.

Results

Attitudes and prior discussion of OD were predictive of registration and willingness to consent. Positive attitudes were also related to previous conversations regarding OD. A more open level of communication within families was associated with an increased tendency to discuss OD, but was not directly related to consent decisions.

Conclusion

Findings reiterate the importance of promoting positive attitudes within the community and specific, informed discussion within families. The positive influence these factors exert on next-of-kin decisions may be vital to maximize donation rates in opt-in systems (such as Australia).

Section snippets

Participants

After obtaining ethical approval from the Human Research Ethics Committee at Macquarie University (reference 5201000661), valid data were obtained from 267 (of 271) respondents; 200 participants from the community volunteered through social networks of the researchers and 67 university students participated in exchange for course credit.

Materials

An on-line survey was administered through Qualtrics and comprised: demographic items; registration as a donor, a single question with yes, no, and uncertain

Results

The sample was predominantly female (74.5%), younger, educated, and Christian. A reliability of .84 (Cronbach's alpha) was found for the modified ODAS.

Discussion

Consistent with predictions, significant associations were observed between attitudes and registration as a donor and willingness to consent for self or family. These findings replicate results reported in the literature1, 4, 7 indicating that more positive attitudes help to predict greater willingness to consent for both individuals and family members. The positive relationship found between attitudes and prior family discussion of OD suggests that affirmative attitudes may also play a

Acknowledgments

We acknowledge the assistance of Ms Jessica Sloey in the preparation of this article.

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Organ transplant is considered a life-saving treatment for patients with end-stage diseases. The knowledge of the population and their opinions can influence the willingness of family members and patients to consent to organ and tissue donation. This work aims to evaluate the effectiveness of a webinar intervention as a knowledge translation tool on the Italian population's knowledge and attitudes related to organ and tissue donation.
The study used an interventional methodology, analyzing the results of a webinar event lasting 120 minutes organized and managed by 4 experienced professionals in collaboration with the National Association of Donors. Evaluation of customer satisfaction at the end of the webinar was assessed, along with the impact of the event on the participants’ perceived knowledge and attitudes.
The overall evaluation of the webinar can be considered satisfactory, and the webinar stood as a valid knowledge translation tool. The intervention significantly improved perceived knowledge, attitudes, and propensity to donate. The analysis showed that the difference between brain death and coma was still doubtful.
A short webinar course was effective and appreciated by the participants, representing a valid knowledge translation tool and an alternative to in-presence training on specific topics that require the creation of a real “culture of donation.”
Attitudes of Nurses Toward Organ Donation in Serbia
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The process of communication includes the multilayered, complex, and dynamic exchange of information, which requires an adjustment of the interpersonal relationship between patients and nurses in providing medical care [14]. Essential elements of professional attitude in communication are also empathy, support, and providing adequate information [15]. The empathic attitude of the participants in our study to the family of potential donors is the result of a professional attitude.
Nurses represent the key persons in the process of organ donation, acting as intermediaries between the patient and the family of a potential donor. The aim of this study was to analyze the factors influencing the attitudes of nurses toward bequeathing and organ and tissue donation.
The research was designed as a cross-sectional study from November 2013 to November 2014 and included a sample of 264 nurses employed in the health system of Serbia. Data were collected using a specific questionnaire of 18 questions referring to the information on sociodemographic characteristics and the knowledge of organ donation.
The investigation enrolled 264 participants, of which 78% were women. The majority of study subjects had secondary medical education (64.4%), lived in an urban area (82.6%), were married (56.4%), and were predominantly Orthodox (87.1%) with their work experience between 5 and 10 years (29.9%) and 10 to 20 years (29.5%). The average knowledge score concerning organ donation was 29.03 (SD, 2.33; range, 23-34). There was a statistically significant difference in the scores between 2 groups formed according the length of service (P < .001) and the level of education (P = .019), which showed the strongest influence on nurses’ attitudes toward donation.
This investigation showed that nurses did not express strong positive attitude toward this issue. Further education of nurses in the Serbian health care system focusing on transplantation and bequeathing of organs and tissues are warranted.
Organ donation within the intensive care unit: A retrospective audit
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Citation Excerpt :
Family conflict or inability of family members to reach a mutually agreed consensus can similarly lead to declining organ donation.28–32 Transparency and open communication within the family unit has been associated with greater engagement in discussions and family agreement to organ donation.33 Current DonateLife campaigns encourage families to engage in conversations about organ donation.10
Despite many Australians supporting organ donation, national posthumous organ donation rates have not increased as expected over the last three decades. Little is known about the barriers to organ donation for patients in intensive care that meet the criteria for organ donation.
The aim of this study was to describe the characteristics of patients identified as potentially suitable for organ donation and to explore the variables associated with the success, or failure, of solid organ donation within the context of an Australian public hospital intensive care unit (ICU).
A retrospective audit examined electronic records of 280 potential organ donors aged 18–80 years, admitted into the ICU between 1 July 2012 and 30 June 2016. Data extracted from three separate electronic hospital databases were amalgamated for analysis.
Of the 280 potential organ donors identified, conversations with families of 182 (65%) patients resulted in their agreement to organ donation. Consent to organ donation was most often provided by the patient's spouse (65, 35.7%); however, only 63.7% (n = 116) were successful organ donors. The remaining 36.3% (n = 66) of patients did not donate organs for medical reasons. Compared with those who did not donate, the typical organ donor was significantly younger (M 49.9 years, p = 0.020), Australian-born (p = 0.031), and had a shorter length of ICU stay (M 64.9 h, p = 0.002). The most frequently donated organs were kidneys (103, 88.8%), lungs (59, 50.9%), and livers (52, 44.8%).
This study provided insights into patient, family, and organisational factors contributing to the success of organ donation outcomes in the ICU. Two factors that adversely impacted donation outcomes were the following: (1) the family did not consent to organ donation on behalf of the patient and (2) consent was provided, but donation did not proceed for medical reasons. Although the focus on the consenting process has been raised, this study highlights the additional impact of medical suitability on rates of organ donation. Family members may experience significant disappointment after consent that may have repercussions on their health and also future donation considerations. This study also highlighted some deficiencies in the databases that, if addressed, could better inform organisational processes in the consent and support of those making decisions about consent.
Taking Care of Relationships in the Intensive Care Unit: Positive Impact on Family Consent for Organ Donation
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Organ donation refusal from relatives of potential donors with brain death significantly reduces organ availability. The need for organ donation has increased over time, but the shortage of available donors is the major limiting factor in transplantation. We analyzed the impact of a new systematic communication approach between medical staff and patients' relatives on the rate of consent to organ donation.
The study was conducted as a single-center, non-randomized, controlled, before-and-after study at an 18-bed intensive care unit (ICU) of a university hospital. We compared the rate of consent for organ donation before and after the introduction of the new communication approach.
A total of 291 brain-dead patients were studied. The consent rate increased from 71% in the pre-intervention period (2007–2012) to 78.4% in the post-intervention period (2013–2015), with an 82.75% increase in the 2014 to 2015 period. During these periods, no significant variation of consent to organ donation was recorded at the national and regional levels.
The introduction of a new communication approach between medical staff and relatives of brain-dead patients was associated with a significant increase in the rate of consent to donation. Our results highlight the importance of empathy with relatives in the ICU.
Knowledge and Opinions of Deceased Organ Donation among Middle and High School Students in Korea
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The current law in Korea allows family members to veto consent for deceased organ donation, such that familial consent is essential with respect to harvesting organs from the deceased. It is well documented that family communication and knowing the intentions of the deceased regarding organ donation are positively correlated with familial consent for deceased organ donation [15,18–20]. In this regard, promoting family discussion about organ donation will be essential to increase deceased organ donation in Korea.
Adolescents are an important target group for organ donation education. As yet, little is known about the attitude of Korean adolescents toward deceased organ donation, or the factors related to their decision. In this study, we explored the knowledge and opinions of deceased organ donation among middle and high school students in Korea.
A self-reported survey was conducted among middle and high school students in Seoul, Korea. The questionnaire assessed knowledge, personal experience, and opinions of organ donation. Logistic regression analysis was performed to determine significant factors associated with willingness to become an organ donor.
Of the 323 students, 161 (49.8%) were willing to be a deceased donor, and the other 162 (50.2%) were unwilling or unsure. Neither level of knowledge nor experience of recent public information on organ donation affected students' decisions. Instead, a cohesive family environment and family discussion were strong predictors of the willingness of Korean middle and high school students to be an organ donor.
A donation education program that promotes family communication and discussion about organ donation could increase willingness to be an organ donor among Korean adolescents.
Emotional paths of professional experiences in transplant coordinators
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Another controversial aspect related to the difficult emotional experiences is emotional expression. In our study, the debate was organised around the meaning of a "good" professional: the women advocate the benefits of expressing emotion, important when seeking balance between negative and positive emotions,8 for overcoming difficult situations and strengthening empathy and trust with the families.27,33 The men mostly associate expressing emotions with a loss of a professional image,34 although some identify the costs of this emotional camouflage, in the same vein as the risk to psychological health, it brings to mind the metaphor of "hiding behind a mask" expressed by some Australian professionals6 (p. 705).
To look at transplant coordinators’ professional narratives and explore their emotional experiences, coping strategies, needs and demands in relation to the donation interview.
Exploratory, transversal, multicenter design, using grounded theory qualitative approach and content analysis of open-ended questionnaire and semistructured interviews with 22 transplant coordinators from the Andalusian Public Health System. Categories of analysis: Transplant coordination: perceptions, functions, impact and consequences; Positive/gratifying aspects and negative/difficult aspects; Donation interview; Coping strategies; Needs, demands and suggestions.
Transplant coordinators maintain a polarised perspective on their work, which they describe as a challenge and an opportunity. They highlight both their satisfaction and professional commitment as work difficulties and requirements, representing stress factors with an impact on professionals’ perceptions, life styles, identity or physical and psychical life. Most gratifying work aspects refer to professional excellence, successful transplants and relationship with patients and their families. The donation interview is considered to be the most stressful moment, in response to which coordinators develop different emotional paths, conditioned by their experience, families’ response to donation and its interpretation by the health team and professional (self) evaluation. Main professional demands are training strategies, group therapies and institutional support.
The complexity and emotional intensiveness of transplant coordination require special interventions aiming to enable professionals towards an improvement of their emotional heath and management.
Conocer las experiencias en la práctica profesional de equipos de coordinación de trasplantes, y explorar sus vivencias emocionales, estrategias de afrontamiento, necesidades y demandas en relación a la entrevista de donación.
Diseño exploratorio, transversal, multicéntrico, con metodología cualitativa, basado en la Teoría Fundamentada y análisis de contenido de cuestionarios con preguntas abiertas y entrevistas semi-estructuradas, realizado con 22 profesionales pertenecientes a equipos de coordinación de trasplantes del Sistema Sanitario Público de Andalucía. Las categorías empleadas en el análisis fueron: Trabajo de coordinación: percepciones, funciones, impacto y consecuencias; Aspectos positivos/ gratificantes y negativos/difíciles de la coordinación de trasplantes; La entrevista de donación; Estrategias de afrontamiento; Necesidades, demandas y propuestas.
Los equipos de coordinación de trasplantes tienen una visión polarizada sobre su trabajo, que describen como reto y oportunidad, evidenciando su satisfacción y compromiso profesional y, por otra parte, las dificultades y exigencias que representan factores de estrés con impacto en sus percepciones, estilos de vida, identidad profesional o salud física y psíquica. Los aspectos más gratificantes se relacionan con la excelencia profesional, trasplantes exitosos y la relación con pacientes y familiares. La entrevista de donación es el momento de mayor estrés, ante el cual se generan diferentes rutas emocionales, condicionadas por la experiencia en la coordinación, la respuesta familiar y su interpretación y la autoevaluación profesional. Las principales demandas profesionales se orientan hacia estrategias formativas, terapia grupal y apoyo institucional.
Ante la complejidad e intensidad emocional del trabajo de coordinación, se requieren intervenciones de capacitación para mejorar la salud y gestión emocional de sus profesionales.

View all citing articles on Scopus

: Dr Claire Wakefield is supported by the National Health and Medical Research Council of Australia (ID510421) and the Cancer Institute NSW.

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Organ donation, recovery and ischemia-reperfusion injuryCommunication and Consent: Discussion and Organ Donation Decisions for Self and Family

Abstract

Background

Method

Results

Conclusion

Section snippets

Participants

Materials

Results

Discussion

Acknowledgments

Soc Sci Med

Transplant Proce

Patient Edu Counselling

Transplant Proc

Communicating about the gifts of life: the effect of knowledge, attitudes, and altruism on behavior and behavioral intentions regarding organ donation

J Appl Commun Res

Beyond the organ donor card: the effect of knowledge, attitudes, and values on willingness to communicate about organ donation to family members

Health Commun

Organ donation, recovery and ischemia-reperfusion injury
Communication and Consent: Discussion and Organ Donation Decisions for Self and Family