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Approaching families on the subject of organ donation: A phenomenological study of the experience of healthcare professionals
Intensive and Critical Care Nursing (2013) 29, 202—211
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ORIGINAL ARTICLE
Approaching families on the subject of organ donation: A phenomenological study of the experience of healthcare professionals Aud Orøy a,b,∗, Kjell Erik Strømskag c,d, Eva Gjengedal a,b a
University of Bergen, Department of Global Public Health and Primary Care, Post Box 7804, NO-5020 Bergen, Norway Molde University College, Institute of Health and Social Care, Post Box 2110, NO-6402 Molde, Norway c Molde Hospital, Unit for Surgery and Critical Care, Parkveien 84, NO-6407 Molde, Norway d University of Technology and Science, Department of Cancer Research and Molecular Medicine, Trondheim, Norway b
Accepted 16 February 2013
KEYWORDS Critical care; Nurses; Physicians; Chaplains; Hermeneutic phenomenology; Phenomenology; In-depth interview; Observations; Interaction; Organ donation
Summary The aim of this study was to explore healthcare professionals’ experiences and gain a deeper understanding of interactions with families when approaching the subject of organ donation. A hermeneutic phenomenological approach was used to explore the participants’ experiences. Data were collected through a combination of observation and in-depth interviews with nurses, physicians and hospital chaplains recruited from two intensive care units (ICUs) in a Norwegian university hospital. A thematic analysis was used to analyse the data, and three main themes emerged from this analysis: crucial timing, challenging conversations and conflicting expectations. The results revealed that the situation was of a sensitive nature and that finding the best possible time to address the issue in a meaningful manner was a challenge. Respect for the patients’ wishes and the families’ decisions were an expressed value among the participants, but conflicting expectations about bringing up the subject were also present. This study contributes to the understanding of healthcare professionals’ challenges when they are facing brain death as an inevitable outcome of a patient’s clinical condition and must approach families on the subject of organ donation. © 2013 Elsevier Ltd. All rights reserved.
∗ Corresponding author at: Molde University College, Institute of Health and Social Care, Post Box 2110, NO-6402 Molde, Norway. Tel.: +47 71214016/48106454; fax: +47 71214050. E-mail address: [email protected] (A. Orøy).
0964-3397/$ — see front matter © 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.iccn.2013.02.003
Approaching families on the subject of organ donation
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Implications for Clinical Practice • A shared understanding of this complex and challenging situation appears necessary before approaching the families with the option of organ donation. • Collaboration within the treatment team appears necessary for a good process. • Training in communication skills may improve the quality of the approach and help healthcare professionals’ better assist the family through the difficult decision-making process, especially when they have little or no experience in similar situations.
Introduction National policies on organ donation and transplantation vary around the world. There are differences in legislation and the policies for obtaining consent for deceased organ donation vary from explicit consent on the one hand to presumed consent on the other (Price, 2012). Explicit consent is a voluntary ‘‘opting-in’’ system that requires expressed consent from a donor and/or involves asking for the family’s consent after death (Crowe and Cohen, 2006). Presumed consent permits organ removal unless the individual has expressed his opposition to donation during his or her lifetime; a stronger version advocates for presumed consent and requires the individual to opt-out of the system, whereas a weaker version requires permission from relatives in the form of informed consent (Hartwell, 1999). The latter version is the prevailing scenario and varies with regard to whether the relatives have a veto right in the decision (Price, 2012). Objections to presumed consent are principally based on autonomy, which is a fundamental ethical principle in Western societies. One of the fundamental problems surrounding this issue relates to whether such consent can be considered consent in the real sense of the word (Lawson, 2008; Voo et al., 2009). In Norway (The Transplant Act, 1973), as in many other European countries (Rithalia et al., 2009; Rosenblum et al., 2012), legislation allows for obtaining organs from the deceased by presumed consent. Regulations (The Ministry of Health and Care Services, 2008) stipulate that the nextof-kin should always be informed and asked about organ donation if the medical circumstances permit. Regulations also state that healthcare professionals should bring up the question in a comprehensive, meaningful and respectful manner with an aim to obtain consent. In contrast to many other countries, no registry for organ donation exists in Norway. Informing one’s close relatives is a valid way of expressing donation wishes. One Norwegian study (Lien et al., 1998) confirmed that family’s consent is obtained when there is a potential donation situation in the intensive care unit (ICU). Other studies have found that the quality of the healthcare professionals’ approach is of crucial importance (Orøy, 2002). In addition, the ways in which they introduce the subject and explain brain death are important aspects of communication with families (Alnæs, 2000). The need for collaboration and mutual understanding within the treatment team are essential for a successful process and to prevent losing organs for transplantation (Meyer and Bjørk, 2008). Little is known about how healthcare professionals experience interactions with potential donor families. International studies,
however, reveal that ICU staff frequently feel uncomfortable discussing organ donation with families (Castellana et al., 2008; Sadala et al., 2006; Sanner, 2007). A lack of training in communication with relatives has been reported (Blok et al., 1999; Castellana et al., 2008; Pellereiaux et al., 2008); and improved self-efficacy for obtaining consent results from attending educational programmes (Blok et al., 2004). Managing families’ needs requires advanced knowledge, skills, and expertise (Coyle, 2000; Sadala et al., 2006; Williams et al., 2003). The significance of the interaction with healthcare professionals is well documented and includes the timing and manner of the request, the relatives’ understanding of brain death, the satisfaction with care and the level of comfort with the staff (Haddow, 2004; Jacoby et al., 2005; Long et al., 2006). Further, knowledge about the donation wishes of the deceased is important for obtaining consent from a family (Siminoff et al., 2007; Sque et al., 2005; Thomas et al., 2009). For many years, the norm for approaching families was to first inform them of the patient’s death and to later ask for the consent to donate, a process called ‘‘decoupling’’ (Gortmaker et al., 1998; Siminoff et al., 2002). Recently, collaboration within professional teams has been recommended to meet different family needs (Marks et al., 2006). This paper presents findings from one part of a larger study (Orøy et al., 2011), and aims to explore and gain a deeper understanding of healthcare professionals’ experiences of the interactions with families when approaching the subject of organ donation.
Methods This hermeneutical phenomenological study is based on the philosophy of Heidegger (1927/1962) as interpreted by Dreyfus (1991) and developed in the works of Benner (1994), Benner et al. (1996) and Benner and Wrubel (1989). Methods for collecting data included observation (Fangen, 2010; Wadel, 1991) and in-depth interviews (Kvale, 1997). A combination of these methods made it possible to gain understanding and insight into these complex and demanding situations. Based on the Heideggerian view that understanding is based on our pre-understanding (Heidegger, 1927/1962), the researcher who conducted the observations and interviews also brought her pre-understanding to the research process.
Setting The study was performed in two ICUs in a Norwegian university hospital. One ICU provided intensive care for general
204 Table 1
A. Orøy et al. Demographic data for the 32 participants interviewed. Registered nurses
ICU-nurses
Head physicians
Senior residents
Hospital chaplains
No. Age Sex f m
8 27—46
8 35—48
8 40—50
4 30—40
4 50—60
7 1
8 0
6 2
2 2
2 2
Experience in ICU — average (year)
¾—16 y
5—15 y 7.2
9—18 y 14.6
2—4 y 3.3
4—6.5 y 5
4.7
critical care patients. The other provided post-operative and intensive care for neurosurgical patients. Between 1996 and 2005, the hospital had an average of 19 potential donors (range 11—29) per year. The total number of potential donors in Norway was 229 (range 116—185) during the same period (Rikshospitalet, 2003, 2005).
Ethical approval Ethical approval, license for collecting data, dispensation from professional secrecy, and permission to perform the study in the ICUs were obtained from the Regional Committee for Research Ethics, the Privacy Ombudsman for Research, the Ministry of Health and Care Services, and the Chief Physicians in the two ICUs, respectively. Written, voluntary, and informed consent was obtained from the healthcare professionals and families involved. Consent for audio recording was obtained from those being interviewed. To ensure confidentiality, identifiable information about the participants was omitted in the written material.
bedsides and in private. The observations were a continuous reflection of how the interactions with families were conducted. Her presence varied from being present for all stages of the approach to only being present either when questions were asked or in follow-up conversations. The researcher’s background as an ICU-nurse enabled her to understand healthcare professionals’ interactions with the families. Whereas the observations focused on how the healthcare professionals approached and conducted their interactions with the families, the in-depth interviews explored their personal experiences. Using an interview guide, open-ended questions were followed by in-depth questions related to the participants’ answers. The interviews were conducted one-to-one in the ICU (n = 26) or by phone (n = 6) as soon as possible after each case was observed. Data collection took place from April 2006 to October 2007. The total observation time for each situation varied from 12 to 94 hours. Field notes were carefully recorded. Each interview lasted from 25 to 150 minutes and was tape-recorded and transcribed verbatim.
Participants Data analysis The focus of the study was healthcare professionals’ interaction with families of critically ill patients with severe brain injuries. Professionals involved in 12 cases were observed. The number of persons in each case varied, and 32 of these (16 nurses, 12 physicians, and 4 hospital chaplains) were recruited for in-depth interviews (Table 1). The criterion for being interviewed was that they had been involved in interactions with the families when it had become clear that the patient would likely progress into brain death and that the subject of organ donation was to be presented to the family. This criterion was extended to include those involved after the subject was presented because the topic of organ donation was sometimes introduced outside of the ICU. The background of the different cases is described in Table 2.
Data collection Nurses or physicians notified the researcher when they had a potential case for the study. They also obtained consent from the families before the researcher became involved in the observations. The researcher obtained consent from the healthcare professionals, clarified her role, and followed them in interactions with families both by the patients’
A thematic analysis (Benner, 1994; van Manen, 1990) was used to grasp the meaning of the participants’ experiences. Benner describes in detail how to perform the analysis. First, observation notes and interview transcripts were read to obtain a sense of whole. Then, preliminary themes were sought and labelled in the notes and transcripts. The preliminary themes from both datasets were compared, and three main themes with sub-themes representing patterns of meaning emerged. The analysis was performed manually and formed a dialectic process between the whole and the parts in the notes and transcript. The interpretation was guided by the research questions, the researcher’s pre-understanding and the two co-authors’ critical questioning. Fig. 1 illustrates the analytical process. The main themes identified in the analysis were crucial timing, challenging conversations, and conflicting expectations (Fig. 2).
Findings The subject of organ donation was, in most cases, presented when the patient’s condition was likely to progress to brain death. Whereas the physicians played the main role in timing
Approaching families on the subject of organ donation Table 2 No.
1
205
Background to the 12 different cases — potential donor, family and healthcare professionals.
Diagnosis of the patient
CI
Unit — where the question was asked
Family members present
Observations
Interviews
Healthcare professionals involved in each case observed
Healthcare professionals interviewed
ICU
Spouse
ICU-physician Registered nurse ICU- nurse
1 ICU-physician 1 Registered nurse 1 ICU-nurse
ICU-physicians Neurosurgeons Registered nurses ICU-nurses Hospital chaplain
1 1 1 1
ICU-physician Registered nurse ICU-nurse Hospital chaplain
2
ICH
ICU
Spouse, sister in-law, small children, father & brothers
3
ICH
The question was not asked
Sisters and brother
ICU-nurses Registered nurses Neurosurgeon
4
ICH
ICU
Husband, son & daughter in law
Neurosurgeon Registered nurse ICU-physician
1 Neurosurgeon 1 ICU-physician 1 Registered nurse
5
ICH
ICU
Husband, daughter, sons & grandchildren
Neurosurgeon Registered nurses ICU-nurses
1 Neurosurgeon 1 Registered nurse 2 ICU- nurses
6
ICH
Emergency unit
Husband, daughters, son, partners
ICU-physicians Registered nurses
1 ICU-physician 1 Registered nurse
7
ICH
Ward
Wife & sons
ICU-physicians Hospital chaplain
1 ICU-physician 1 Hospital chaplain
TBI
ICU
Mother, father, daughter, sister & brothers with partners, aunt & uncle
ICU-physicians Neurosurgeon Registered nurses ICU-nurse Hospital chaplain
1 1 2 1
9
TBI
By the spouse — on the phone
Spouse, small and adult children with partners & child
Neurosurgeon ICU-physicians Registered nurse Hospital chaplain
1 ICU-physician 1 Registered nurse 1 Hospital chaplain
10
ICH
ICU
Sisters, brother in law
ICU-physicians ICU-nurse
1 ICU-physician 1 ICU-nurse
11
ICH
Local hospital — ICU
Spouse, son and daughters
Neurosurgeons ICU physicians ICU-nurses Registered nurses
1 ICU-physician 1 ICU-nurse
12
ICH
The question was not asked
Sons, daughter, ex-husband, child
Neurosurgeons ICU-physician Registered nurses
1 ICU-physician 1 Registered nurse
8
ICU-physician Registered nurse ICU-nurses Hospital chaplain
CI, Cerebral infarction; ICH, intracranial hemorrhage; TBI, Traumatic brain injury; OD, organ donation.
and raising the issue, the nurses were present during these conversations and subsequently followed up with the family. The hospital chaplains were not involved in bringing up the issue but were sometimes involved before or after the request. The differences in involvement are reflected in the way in which the quotations are distributed among the healthcare professionals.
Crucial timing Finding the best possible time to address the subject was reported as being challenging, but it was of crucial importance to approach the family without causing distress. Ideal timing seemed to occur when the healthcare professionals approached the family with information, when the
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A. Orøy et al.
From approaching family on the subject of organ donation
Condenced description from fieldnotes
Quote from interview that illustrates
The physician introduced himself, went through the development in patient’s condition - step by step. After this information – there was a break –than he said to the family – I have a difficult subject to bring up; and the daughter spontaneous expressed – I know what it is – it’s about taking organs – The physician nods ……
…she had insight, and had thought about it on beforehand. I think she immediately understood what I wanted to ask about. I have only positive experience with this conversation I have been in situation when the family have been upset, and had no interest in discussing the subject.
Figure 1
Preliminary theme
Info about the severity in situation Raising the issue Shared understanding Successful approach Possible to go wrong
Interpretations of observations and interview
The subject was brought up with information about the development in patient’s condition. It seems like the physician had a strategy for approaching the family: after the question, he had a break and gave the family” time and space” to reorient themselves – and the daughter spontaneous verbalised that she understood what this question was about.
Main theme and sub-theme
The crucial timing -Ideal timing
From other cases, this physician knew that the family might be upset and have no interests of discussing the subject. The time for bringing up the subject seemed to be ideal – the family was prepared by the information, they understood what he wanted to ask about and they also put the first words to the subject. The physician might confirm the family’s understanding….. This pattern was also observed or described by participants from other cases. While the physician in the present example told about positive experiences with the conversation, other used the word timing, perfect or ideal to describe the way of bringing up the subject.
Illustration of the analytical process CASE 5.
family was ‘‘ready’’, and when the subject was brought up as a response to the family’s questions. In reality, however, certain pitfalls related to timing were experienced, such as an unpredictable patient situation or a miscalculation on the part of the healthcare professional in presenting the subject ‘‘too soon’’.
Ideal timing The timing was based on the physicians’ assessment of the particular situation. Some emphasised that the timing depended on the situation and on whether the family was ‘‘ready’’: ‘‘. . .The crucial point is when you present the subject. This depends on the family and, in a way; they have to be ‘‘ready’’. The immediate reactions and the shock from the first message must have abated. You cannot present this in a ‘‘subordinate clause’’. I think it is best to present the subject separately in a conversation dealing solely with this issue. If not, the family may get the impression that we [. . .] just want the organs, that we are ‘‘vultures’’ hunting for organs. . .’’ (Physician-4). This quote illustrates the physician’s awareness of sensitivity, the significance of a gradual approach, and the potential for a perceived conflict of interest if the topic of donation is presented before the family is ready. In this and similar situations, the subject was presented as a response to the families’ questions:
‘‘. . .I got the conversation on the track I wanted, delivered my message, and waited for the family to reorient themselves. They then asked: ‘‘What do we have to do?’’ That was the time for going on because I felt they were listening again. I said there were two possibilities. We could withdraw, but we could also fulfil her last wish. . .if her last wish was donation, and it was. They had talked about it. . .’’ (Physician-1). According to this physician, the timing was ‘‘ideal’’. Using a short pause in the conversation, he gave the family ‘‘time and space’’ to reorient themselves. When the family asked, ‘‘What do we have to do?’’, he seized the moment and explained the possibilities. The time for bringing up the subject was guided by the family’s questions and their ‘‘readiness’’ to proceed. ‘‘Too early’’ timing Despite the clinical and objective signs of a bad prognosis, the progress of a patient’s condition was not always predictable. The situation was sometimes ‘‘misread’’ and the subject presented ‘‘too early’’. In one case, the patient’s condition unexpectedly ‘‘improved’’ after the subject was presented. The healthcare professionals later disagreed about the timing of this situation. In another case, one patient was transferred to the university hospital for further tests and treatment after the subject of donation had been presented to the family at the local hospital. Healthcare professionals at the university hospital found this to be an extraordinary situation and argued that such timing was inappropriate:
Approaching families on the subject of organ donation
‘‘There is no automatic way to act. . . You learn some ‘‘trick or other’’, but the situation is new and painful each time. . .more painful the younger the patient is, especially if the patient is a child. . .It is awful if young children are present. Then I sit at the bedside and imagine these are my own children crying. . .’’ (Physician-1).
Data analysis
Crucial ming
Challenging conversaons
Ideal ming
Preparing for a unique situaon
"Too early" ming
Delivering the bad news
207
Conflicng expectaons
External expectaons
Internal expectaons
Respecng the paent's wishes
Respecng families' decision
Figure 2 Illustration of the main themes with sub-themes identified in the analysis.
‘‘The harm was already caused when the patient came to our ICU. Such events leave lasting impressions. It was completely wrong and discredited the system. For the family, this was an awful situation. . .’’ (Physician-11). Although there seemed to be agreement about the timing within the situation, there was sometimes subsequent disagreement. This finding illustrates the complexity of donation situations, and that raising the issue too early is inappropriate and may cause the relatives to question whether the professionals have the patient’s best interests at heart.
Challenging conversations Donation situations and conversations were experienced as being challenging by the healthcare professionals. They recounted difficult events, usually with several family members present, and sometimes with children involved. Some said they tried to maintain a continuity of staff, but they were involved in different parts of the process and sometimes such a conversation was the first meeting with the family. Preparing for a unique situation Despite the subject being the same, each situation was unique, and the healthcare professionals had to adapt to each situation:
Some nurses stated that the situation was determined by the people involved, healthcare professionals and relatives alike: ‘‘The question is what do we do and how do what we do. That’s also the challenge. Hence, we cannot have procedures’’ (Nurse-1). Most physicians reported that they prepared themselves before meeting the family. They read the medical record, considered possible ways of saying things, or collaborated with colleagues or nurses. Some stated that it was difficult to find enough time to prepare, especially when the shift was busy. Although collaboration generally worked well, the nurses sometimes looked for greater involvement and presence from the physicians: ‘‘He should have contacted me. The situation would have been quite different if we had talked together before we met the family (. . .) I prefer planning and predictability’’ (Nurse-9). This report illustrates the significance of collaboration to ensure the situation’s predictability for those involved. Delivering the bad news A pattern emerged in the healthcare professionals’ approach to families. The physicians were calm and polite, shook hands and usually sat down facing the family. They attempted to establish a dialogue, and after a short introduction, they carefully broke the bad news. The following was a typical situation: ‘‘Physician:. . .Unfortunately there is a new turn in his condition. . .I don’t think this will end well. . .We have considered different types of treatment. . .We can do some surgery and decrease the intracranial pressure (ICP) by opening his skull. . .However, I am afraid this step will prolong an on-going process. He may survive, but I don’t think this will lead to a life with dignity. Mother: What can we do? What will happen? Physician continued:. . .I think the ICP will increase so much that the blood circulation in the brain will stop. . .This is what we call brain death. . . In this situation, it is relevant to raise an issue that some consider brutal, the issue of organ donation. . .’’ (Field notes-8). In this and other conversations, the physicians were open and honest about the patient’s condition, and sought to help the families realise that the patient most likely would die or progress into brain death. They explained the process of brain death and focused on the patient’s inability to recover from the catastrophic brain injury. Shared understanding of the situation seemed necessary before organ donation was brought up as an option. Information about the criteria for death and a donation process was sometimes conducted in this or in follow-up conversations. They tried to use everyday
208 language. The nurses generally listened during the conversations and subsequently addressed the family’s responses and questions, when necessary. Respecting the patient’s wishes The physicians were mainly interested in the patient’s attitude towards organ donation. They asked whether the family had ever spoken about donation, if they were familiar with the patient’s wishes, or whether the patient had expressed a negative attitude towards donation. Respect for the patient’s wishes was emphasised: ‘‘Our task as physicians in the ICU is not to get many donors but to ask all families in such a way that they feel free to inform us of the patient’s view. A ‘‘no’’ is just as good as a ‘‘yes’’ (. . .). The premise for the family’s answer must be the patient’s wish’’ (Physician-1). The healthcare professionals spent time in conversations with the family and also gave them time to discuss the subject. However, making a decision on behalf of the patient was sometimes difficult. When the nurses or at times the hospital chaplains, detected doubt or disagreement within the family they collaborated with the physicians. Some gave the family more information and others tried to help them to understand the patient’s viewpoint:
A. Orøy et al. ‘‘I had never met the family before (. . .). Despite that I trust my colleagues; I like to speak with the family myself. It’s about my experiences. Sometimes we have been too ‘‘quick’’ and it was not like we thought. . .’’ (Physician-10) Cases with the involvement of several persons illustrate the significance of clarifying a family’s decision before a donation is conducted.
Conflicting expectations Both external and internal expectations were registered in relation to raising the issue of organ donation. External expectations arose from legislation and policy. Internal expectations arose from the healthcare professionals’ respect for the family’s wishes and an altruistic attitude. Hence, conflicting meanings related to presenting donation as an option were present. External expectations Expectations from the environment might increase the pressure in an already sensitive and pressured situation: ‘‘I said to my colleague we had to bring up the subject with the family. I don’t think he was ‘‘happy’’ with the idea (. . .) I think he felt it was burdensome, as he had to both speak with the family and make the decision about withdrawing’’ (Physician-6).
‘‘In such cases, we have to get at the patient’s viewpoint. What did he want? They thought he would have consented to a donation. . . It seemed to me as if these words were a relief, as if I took a burden from their shoulders. . .’’ (Physician-8).
In other situations, nurses felt conflicted over the dualpurpose call for relatives to come when the patient’s condition was critical:
By moving the focus of the decision from the family to the patient, this physician helped the family decide. The hospital chaplains might also be involved in the decision-making:
‘‘I had to phone the relatives several times (. . .) I felt it was because they (physicians) had an important question to ask and not primarily because we wanted the family to be present’’ (Nurse-5).
‘‘The mother felt alone (. . .) I brought up the subject with the whole family. When the daughter said that a donation would be in accordance with the father’s view, the mother agreed and the situation seemed to be easier for her. . .’’ (Chaplain-9). Respecting the families’ decisions There was a culture of respecting the families’ decisions whether or not they consented to donation. No healthcare professional wanted to influence the family’s decision but wanted a decision in accordance with the patient’s or family’s wishes: ‘‘There was some personal thing in the family, and donation was neither in contrast with the patient’s wishes. For me, this issue is important, as I felt the family’s consent was based on their own and patient’s wishes and not of duty’’ (Nurse-5). In general, several hours passed after the subject of organ donation was introduced before the patient’s condition developed into brain death and death was confirmed by cerebral angiography. Together with this final announcement, the physicians generally obtained a family’s consent or refusal or repeated their decision:
Indignation expressed:
concerning
the
legislation
was
also
‘‘According to legislation, there is no requirement about family consent. One physician says we can remove organs without asking the family. I mean, we have to ask (. . .) to stop asking will not serve the donation activity. If we want organs, we have to act carefully. Response from the public will be strong if we stop asking’’ (Nurse-1). Internal expectations Although the healthcare professionals were aware of the significance of organ donation, some had conflicting feelings. One physician stated that he felt positively about donation but that it was also a difficult and unpleasant subject to address: ‘‘First, you announce the shocking news, and then you want something back. You somehow force the family to give a statement. When you are in ‘‘shock’’ you want privacy, but in these cases, the physicians ask the family to make quick decisions’’ (Physician-5). This conflict was also reported by several nurses: ‘‘For me, this is an inhuman question to ask. I feel it is brutal in such a situation. At the same time, I see the
Approaching families on the subject of organ donation benefit for those who need the organs and get a new life and the importance of the family’s consent’’ (Nurse-5). The healthcare professionals were trained to help others. When there was no hope for the patient’s recovery, they voiced a desire to help other critically ill patients through donation. This action was described as being meaningful: ‘‘In such a meaningless situation, helping seven others is fabulous’’ (Nurse-2). ‘‘Family consent is a triumph and imbues the situation with some meaning. There is a positive atmosphere in the unit when you succeed’’ (Physician-4). Although the healthcare professionals felt that helping others was meaningful, some were challenged by conflicting emotions: ‘‘The day after, I felt the situation complicated — I almost felt ‘‘schizophrenia’’ by thinking of the seven who got life in gift. Moving between the two focuses. . .’’ (Hospital chaplain-2). Despite the healthcare professionals’ expressed respect for the family’s decision, some confessed that a refusal might be a challenge: ‘‘I feel lucky when we succeed, and it’s a pity when we don’t. . . could I perhaps have followed up family better, been a driving force towards donation? On the other hand, the meaning is not the outcome. The meaning is being there for someone. . .’’ (Physician-6). Overall, the healthcare professionals wished to help the families through these difficult situations in the best manner possible.
Discussion Approaching families regarding the subject of organ donation represents a challenge to healthcare professionals. Findings reveal that the issue was raised with information about the patient’s clinical condition and progress. The challenge was to find the best possible time and to address the issue in a comprehensive, respectful, and meaningful manner, as required by regulations (The Ministry of Health and Care Services, 2008). Generally, the patient’s condition worsened within a few hours or days, and the healthcare professionals had little time to get to know and prepare the family. The short timeframes and the sensitive nature of the situations made the timing and the conversations challenging, and required watchfulness and concentration from those involved. Although the physicians’ training varied, all had some experience with the challenges involved in delivering bad news. They were attuned to the particular situation, and dialogue seemed important for sensing when the family was ‘‘ready’’ to be approached. This seemed to be more challenging when they were involved late in the process because of staffing changes. The significance of providing understandable information and the manner of the request was emphasised by the healthcare professionals in this study and by families in other studies (Haddow, 2004; Jacoby et al., 2005; Long et al., 2006; Sanner, 2007).
209 The healthcare professionals were primarily interested in the patient’s view on organ donation, a focus that at times reduced the relatives’ burden. This finding corresponds with legislation (The Ministry of Health and Care Services, 2008) and with studies reporting that knowledge about the deceased’s wishes influences the consent rate (Rocheleau, 2001; Siminoff et al., 2007; Sque et al., 2005). Respect for the patient’s wishes and the family’s autonomy was emphasised. According to Knopp et al. (1996), this consideration is important, as it gives the family a sense of control. The timing sometimes seemed more challenging in certain situations than in others. Inappropriate timing may worsen the situation, and the family can question whether the healthcare professionals are more interested in the organs than in the patient’s care. Although the participants did not explicitly mention the donation rate related to timing, this approach was taken in other studies. Gortmaker et al. (1998) found that a ‘‘decoupled’’ approach to the family increased the donation rate. In practice, this means that the family is notified of the death by one physician and asked for the consent to donate by another, a situation which is not necessarily best for the family (Marks et al., 2006). According to Siminoff et al. (2002), the timing had only a weak effect on the family’s decision. These authors emphasised the process of discussing donation with the family rather than portraying the request as an event occurring at a single point in time. Based on the organ shortage and long waiting lists in Norway, healthcare professionals are mandated by regulations to ask for the consent to donate. Qualities such as empathy and communication skills are required of those involved (The Ministry of Health and Care Services, 2008). The main impression from our study is that healthcare professionals approached the subject with respect and empathy. Generally, empathy is associated with humaneness, equality, respect, and solidarity (Wackerhausen, 1998), as well as understanding. Although the healthcare professionals had the best intentions, we sensed ambivalence related to a family’s possible refusal. Empathy is crucial in guiding the families through the patient’s treatment and may ease their situation, resulting in respect for the decision, whatever the answer. However, according to regulations, healthcare professionals are encouraged to address the question in a manner that contributes to consent. If the family consents as a result of the healthcare professionals’ empathic attitude, there is no assurance that the decision is a result of the patient’s or the family’s free will. However, according to Wackerhausen (1998), empathy is often a means to ‘‘something else’’, not necessarily something positive. If the healthcare professionals are not aware of the power in the caring relationship (Henriksen and Wetlesen, 2006) they may be working to obtain presumed consent instead of informed consent. In the eagerness to accommodate the system, one runs the risk of empathy becoming a strategy to increase the donation rate. Empathy may then turn into empathy of power (Wackerhausen, 1998), and may be regarded as a strategy because it is used as a means and not as an end. The ambiguity of the existing regulations opens up the possibilities of realising the power of empathy. Although respect for patient’s wishes and families autonomy was a strong value among the participants,
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they were not indifferent to the results. Some considered it a success when a family consented to donation and asked themselves whether they could have conducted things in a different manner when a family refused. Helping others by organ donation was mainly considered meaningful when there was no hope of recovery for the present patient. According to Benner and Wrubel (1989), we involve ourselves in the world because things matter to us and grasp situations directly in terms of the meaning for ourselves. Because of the vulnerability involved in these situations, there is a risk of causing distress. Despite the best intentions of healthcare professionals, the request may be perceived as inappropriate. In such a case, both the family and the healthcare professionals will suffer. Therefore, healthcare professionals have to carefully balance their obligations towards the family’s decisions and those to the critically ill persons waiting for life-saving organs. Our findings illustrate the paradoxical situation of explaining brain death and discussing organ donation with families. Annas (1988) describes the paradox as follows:
patient wishes and family decisions was an expressed value among the participants, but conflicting expectations related to raising the subject were also present. During the process, the healthcare professionals were faced with contradictory considerations. On the one hand, they wanted to support the family regardless of their decision. On the other, they had a duty to obtain consent for donation. Ideally, the healthcare professionals wished to balance respect for the family’s decision with concern for the patients awaiting lifesustaining organs. This ideal is difficult to attain due to the slight bias of the regulations in favour of the patients waiting for organs. If the healthcare professionals are not aware of the power imbalance in the caring relationship, they may be working to obtain presumed consent instead of informed consent. Accordingly, an increased awareness related to this requirement in the regulations seems necessary to prevent manipulation.
‘‘It is the requirement of death of one person before life of another can be saved or improved, that makes organ transplantation unique, and that ensures that the attitudes of both public and healthcare professionals toward it will always be profoundly ambivalent’’ (Annas, 1988, p. 622).
AO completed data collection, analysis, drafting of the manuscript and study design with the help of KES and EG, who contributed to analysis and a critical revision of the article.
Twenty-five years later, this process still remains a challenge.
Contributions
Conflict of interest statement The authors report no conflicts of interest related to the article.
Strengths and limitations Funding Through the methods chosen, the researchers came close to the situation and the healthcare professionals’ experiences. Whereas the interviews provided insight into the participants’ experiences, the observations contextualised the interviews and placed them into perspective. This combination also increases the trustworthiness of the study’s findings. Methodologically, in interpretive phenomenology there is no clear endpoint to the interpretations. A tenet is that there can always be another and most likely deeper interpretation (Leonard, 1994). However, competing interpretations do not necessarily negate one another, but rather allow for further exploration of the phenomenon. Because the subject of organ donation was sometimes introduced before the researcher was involved, limitations arose relating to the researcher not being present at all the meetings, and that all involved were not interviewed. Because the participants were recruited from one Norwegian hospital, there may be both national policies and cultural limitations related to the transferability of the findings.
Conclusion Both nurses and physicians were involved in approaching families regarding the subject of organ donation. The physicians played the main role with regard to timing and raising the issue. The situation was sensitive in nature, and finding the best possible time to address the issue in a respectful and meaningful manner presented a challenge. Respecting
The study is funded by Molde University College, The Norwegian Nurses Organization and The Nordmøre and Romsdal Health Trust. The sponsors have no role in the study.
Acknowledgements We are grateful to the study’s participants for willingly including us in the world of critical illness and organ donation and for sharing their experiences with us. We also want to thank Garrett Chan from the Nursing School of the University of California, San Francisco (UCSF) for his help with critical revisions to the article.
References Alnæs AH. Erfaringer fra akutte organdonasjoner [Experiences from acute organ donations]. Omsorg 2000;17:35—40. Annas GJ. The paradoxes of organ transplantation. Am J Public Health 1988;78:621—2. Benner P. Interpretive phenomenology: embodiment, caring and ethics in health and illness. Thousand Oaks, CA: SAGE Publications; 1994. Benner P, Tanner CA, Chesla CA. Expertise in nursing practice. Caring, clinical judgment and ethics. New York: Springer Publishing Company; 1996. Benner P, Wrubel J. The primacy of caring. Stress and coping in health and illness. Menlo Park, CA: Addison-Wesley Publishing Company; 1989.
Approaching families on the subject of organ donation Blok G, Morton J, Morley M, Kerckhoffs C, Kootstra G, van der Vleuten C. Requesting organ donation: the case of self-efficacy. Effects of the European Donor Hospital Education Programme (EDHEP). Adv Health Sci Educ Theory Pract 2004;9:261—82. Blok G, van Dalen J, Jager K, Ryan M, Wijnen R, Wight C, et al. The European Donor Hospital Education Programme (EDHEP): addressing the training needs of doctors and nurses who break bad news, care for the bereaved, and request donation. Transpl Int 1999;12:161—7. Castellana T, Burallò N, Gonzalo R, Barreto M, Guilera E, Dìez J, et al. Health care professionals: what do they know about organ donation? Prog Transplant 2008;18:141—5. Coyle M. Meeting the needs of the family: the role of the specialist nurse in the management of brain death. Intensive Crit Care Nurs 2000;16:45—50. Crowe S, Cohen E. Organ transplantation policies and policy reforms; 2006. Available from: http://bioethics.georgetown. edu/pcbe/background/crowepaper.html [accessed 12.04.02]. Dreyfus HL. Being-in-the-world: a commentary on Heidegger’s Being and Time, Division 1. Cambridge, UK: The MIT Press; 1991. Fangen K. Deltagende observasjon [Participant observation]. Bergen: Fagbokforlaget; 2010. Gortmaker SL, Beasley CL, Sheehy E, Lucas BA, Brigham LE, Grenvik A, et al. Improving the request process to increase family consent for organ donation. J Transpl Coord 1998;8:210—7. Haddow G. Donor and nondonor families’ accounts of communication and relations with healthcare professionals. Prog Transplant 2004;14:41—8. Hartwell L. Global organ donation policies around the world; 1999. Available from: http://lorihartwell.net/fileadmin/pdf/ GlobalOrganDOantionPolicies.pdf [accessed 12.04.02]. Heidegger M. Being and time. San Fransisco: A Division of HarperCollinPublisher, HarperSanfransisco; 1927/1962. Henriksen J, Wetlesen A. Nærhet og distanse. Grunnlag verdier og etiske teorier i arbeid med mennesker [Closeness and distance. Values and ethical theories in working with human beeings]. Oslo: Ad Notam Gyldendal; 2006. Jacoby LH, Breitkopf CR, Pease EA. A qualitative examination of the needs of families faced with the option of organ donation. Dimens Crit Care Nurs 2005;24:183—9. Knopp R, Rosenzweig S, Bernstein E, Totten V. Physician—patient communication in the emergency department. Part 1. Acad Emerg Med 1996;3:1065—9. Kvale S. Interview. En introduktion til det kvalitative forskningsinterview [An introduction to the qualitative research interview]. København: Hans Reitzels Forlag; 1997. Lawson A. Presumed consent for organ donation in the United Kingdom. Intensive Care Soc 2008;9:116—7. Leonard V. A Heideggerian phenomenological perspective on the concept of person. In: Benner P, editor. Interpretive phenomenology: embodiment, caring, and ethics in health and illness. Thousand Oaks, CA: SAGE Publications; 1994. Lien B, Brekke A, Flatmark A. Organdonasjon fra avdøde givere i Norge 1993—96 [Organ donation from deceased donors in Norway 1993—1996]. Tidsskr Nor Laegeforen 1998;118:1550—3. Long T, Sque M, Payne S. Information sharing: its impact on donor and nondonor families’ experiences in the hospital. Prog Transplant 2006;16:144—9. Marks WH, Wagner D, Pearson TC, Orlowski JP, Nelson PW, McGowan JJ, et al. Organ donation and utilization, 1995—2004: entering the collaborative era. Am J Transplant 2006;6:1101—10. Meyer K, Bjørk I. Change of focus: from intensive care towards organ donation. Transpl Int 2008;21:133—9. Orøy, A., 2002. Døden i livets tjeneste: en fenomenologisk studie av pårørendes opplevelser og erfaringer i forbindelse med spørsmålet om organdonasjon (Death and its gift to life: a phenomenological study of families’ experiences with the question
211 about organ donation). Master thesis. Bergen: University of Bergen. Orøy A, Strømskag K, Gjengedal E. Interaction with potential donors’ families: the professionals’ community of concern — a phenomenological study. Int J Qual Stud Health Well-being 2011;6:1—11. Pellereiaux B, Roels L, Van Deysne D, Smiths J, Cornu O, Delloye C. An analysis of critical care staff’s attitudes to donation in a country with presumed consent legislation. Prog Transplant 2008;18:173—8. Price DPT. Legal framework governing deceased organ donation in the UK. Br J Anaesth 2012;108(S1):i68—72. Rikshospitalet. Organdonasjon og transplantasjon årsrapport 2003 [Organ donation and transplantation, annual report 2003]. Oslo: Rikshospitalet; 2003. Rikshospitalet. Organdonasjon og transplantation årsrapport 2005 [Organ donation and transplantation, annual report 2005]. Oslo: Rikshospitalet; 2005. Rithalia A, McDaid C, Suekarran S, Norman G, Myers L, Sowden A. A systematic review of presumed consent systems for deceased organ donation. Health Technol Assess 2009;13:iii, ix—xi, 1—95. Rocheleau C. Increasing family consent for organ donation: findings and challenges. Prog Transplant 2001;11:194—200. Rosenblum A, Horvat L, Siminoff L, Prakash V, Beitel J, Garg A. The authority of next-of-kin in explicit and presumed consent systems for deceased organ donation: an analysis of 54 nations. Nephrol Dial Transplant 2012;27:2533—46. Sadala M, Lorencon M, Cercal M, Schelp A. Caring for organ donors: the intensive care unit physicians’ view. Heart Lung 2006;35:190—7. Sanner MA. Two perspectives on organ donation: experiences of potential donor families and intensive care physicians of the same event. J Crit Care 2007;22:296—304. Siminoff LA, Lawrence RH, Zhang A. Decoupling: what is it and does it really help increase consent to organ donation? Prog Transplant 2002;12:52—60. Siminoff LA, Mercer MB, Graham G, Burant C. The reasons families donate organs for transplantation: implications for policy and practice. J Trauma 2007;62:969—78. Sque M, Long T, Payne S. Organ donation: key factors influencing families’ decision-making. Transplant Proc 2005;37:543—6. The Ministry of Health and Care Services. Circular I-6/2008. Regulations concerning organ donation and consent (in Norwegian); 2008. Available from: http://www.regjeringen. [accessed no/upload/HOD/HRA/Rundskriv%20I-6%202008.pdf 12.04.02]. The Transplant Act. Act relating to transplantation, hospital autopsies and donation of bodies etc. February 9, 1973 No. 6; 1973. Available from: http://www.lovdata.no/all/hl-19730209-006. html [accessed 12.04.02]. Thomas SL, Milnes S, Komesaroff PA. Understanding organ donation in the collaborative era: a qualitative study of staff and family experiences. Intern Med J 2009;39:588—94. van Manen M. Researching lived experience. Human science for an action sensitive pedagogy. Canada: The Althouse Press; 1990. Voo TC, Campbell AV, de Castro LD. The ethics of organ transplantation: shortages and strategies. Ann Acad Med Singapore 2009;38:359—66. Wackerhausen S. Den gode vilje og magtens empati. In: Hansen H, editor. Omsorg, krop og død: en bog om sygepleje [Caring, body and death: a book concerning nursing]. Copenhagen: Gyldendalske Boghandel Nordisk Forlag A.S.; 1998. Wadel C. Feltarbeid i egen kultur [Fieldwork in your own culture]. Flekkefjord: Seek A/S; 1991. Williams MA, Lipsett PA, Rushton CH, Grochowski EC, Berkowitz ID, Mann SL, et al. The physician’s role in discussing organ donation with families. Crit Care Med 2003;31:1568—73.
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ORIGINAL ARTICLE
Approaching families on the subject of organ donation: A phenomenological study of the experience of healthcare professionals Aud Orøy a,b,∗, Kjell Erik Strømskag c,d, Eva Gjengedal a,b a
University of Bergen, Department of Global Public Health and Primary Care, Post Box 7804, NO-5020 Bergen, Norway Molde University College, Institute of Health and Social Care, Post Box 2110, NO-6402 Molde, Norway c Molde Hospital, Unit for Surgery and Critical Care, Parkveien 84, NO-6407 Molde, Norway d University of Technology and Science, Department of Cancer Research and Molecular Medicine, Trondheim, Norway b
Accepted 16 February 2013
KEYWORDS Critical care; Nurses; Physicians; Chaplains; Hermeneutic phenomenology; Phenomenology; In-depth interview; Observations; Interaction; Organ donation
Summary The aim of this study was to explore healthcare professionals’ experiences and gain a deeper understanding of interactions with families when approaching the subject of organ donation. A hermeneutic phenomenological approach was used to explore the participants’ experiences. Data were collected through a combination of observation and in-depth interviews with nurses, physicians and hospital chaplains recruited from two intensive care units (ICUs) in a Norwegian university hospital. A thematic analysis was used to analyse the data, and three main themes emerged from this analysis: crucial timing, challenging conversations and conflicting expectations. The results revealed that the situation was of a sensitive nature and that finding the best possible time to address the issue in a meaningful manner was a challenge. Respect for the patients’ wishes and the families’ decisions were an expressed value among the participants, but conflicting expectations about bringing up the subject were also present. This study contributes to the understanding of healthcare professionals’ challenges when they are facing brain death as an inevitable outcome of a patient’s clinical condition and must approach families on the subject of organ donation. © 2013 Elsevier Ltd. All rights reserved.
∗ Corresponding author at: Molde University College, Institute of Health and Social Care, Post Box 2110, NO-6402 Molde, Norway. Tel.: +47 71214016/48106454; fax: +47 71214050. E-mail address: [email protected] (A. Orøy).
0964-3397/$ — see front matter © 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.iccn.2013.02.003
Approaching families on the subject of organ donation
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Implications for Clinical Practice • A shared understanding of this complex and challenging situation appears necessary before approaching the families with the option of organ donation. • Collaboration within the treatment team appears necessary for a good process. • Training in communication skills may improve the quality of the approach and help healthcare professionals’ better assist the family through the difficult decision-making process, especially when they have little or no experience in similar situations.
Introduction National policies on organ donation and transplantation vary around the world. There are differences in legislation and the policies for obtaining consent for deceased organ donation vary from explicit consent on the one hand to presumed consent on the other (Price, 2012). Explicit consent is a voluntary ‘‘opting-in’’ system that requires expressed consent from a donor and/or involves asking for the family’s consent after death (Crowe and Cohen, 2006). Presumed consent permits organ removal unless the individual has expressed his opposition to donation during his or her lifetime; a stronger version advocates for presumed consent and requires the individual to opt-out of the system, whereas a weaker version requires permission from relatives in the form of informed consent (Hartwell, 1999). The latter version is the prevailing scenario and varies with regard to whether the relatives have a veto right in the decision (Price, 2012). Objections to presumed consent are principally based on autonomy, which is a fundamental ethical principle in Western societies. One of the fundamental problems surrounding this issue relates to whether such consent can be considered consent in the real sense of the word (Lawson, 2008; Voo et al., 2009). In Norway (The Transplant Act, 1973), as in many other European countries (Rithalia et al., 2009; Rosenblum et al., 2012), legislation allows for obtaining organs from the deceased by presumed consent. Regulations (The Ministry of Health and Care Services, 2008) stipulate that the nextof-kin should always be informed and asked about organ donation if the medical circumstances permit. Regulations also state that healthcare professionals should bring up the question in a comprehensive, meaningful and respectful manner with an aim to obtain consent. In contrast to many other countries, no registry for organ donation exists in Norway. Informing one’s close relatives is a valid way of expressing donation wishes. One Norwegian study (Lien et al., 1998) confirmed that family’s consent is obtained when there is a potential donation situation in the intensive care unit (ICU). Other studies have found that the quality of the healthcare professionals’ approach is of crucial importance (Orøy, 2002). In addition, the ways in which they introduce the subject and explain brain death are important aspects of communication with families (Alnæs, 2000). The need for collaboration and mutual understanding within the treatment team are essential for a successful process and to prevent losing organs for transplantation (Meyer and Bjørk, 2008). Little is known about how healthcare professionals experience interactions with potential donor families. International studies,
however, reveal that ICU staff frequently feel uncomfortable discussing organ donation with families (Castellana et al., 2008; Sadala et al., 2006; Sanner, 2007). A lack of training in communication with relatives has been reported (Blok et al., 1999; Castellana et al., 2008; Pellereiaux et al., 2008); and improved self-efficacy for obtaining consent results from attending educational programmes (Blok et al., 2004). Managing families’ needs requires advanced knowledge, skills, and expertise (Coyle, 2000; Sadala et al., 2006; Williams et al., 2003). The significance of the interaction with healthcare professionals is well documented and includes the timing and manner of the request, the relatives’ understanding of brain death, the satisfaction with care and the level of comfort with the staff (Haddow, 2004; Jacoby et al., 2005; Long et al., 2006). Further, knowledge about the donation wishes of the deceased is important for obtaining consent from a family (Siminoff et al., 2007; Sque et al., 2005; Thomas et al., 2009). For many years, the norm for approaching families was to first inform them of the patient’s death and to later ask for the consent to donate, a process called ‘‘decoupling’’ (Gortmaker et al., 1998; Siminoff et al., 2002). Recently, collaboration within professional teams has been recommended to meet different family needs (Marks et al., 2006). This paper presents findings from one part of a larger study (Orøy et al., 2011), and aims to explore and gain a deeper understanding of healthcare professionals’ experiences of the interactions with families when approaching the subject of organ donation.
Methods This hermeneutical phenomenological study is based on the philosophy of Heidegger (1927/1962) as interpreted by Dreyfus (1991) and developed in the works of Benner (1994), Benner et al. (1996) and Benner and Wrubel (1989). Methods for collecting data included observation (Fangen, 2010; Wadel, 1991) and in-depth interviews (Kvale, 1997). A combination of these methods made it possible to gain understanding and insight into these complex and demanding situations. Based on the Heideggerian view that understanding is based on our pre-understanding (Heidegger, 1927/1962), the researcher who conducted the observations and interviews also brought her pre-understanding to the research process.
Setting The study was performed in two ICUs in a Norwegian university hospital. One ICU provided intensive care for general
204 Table 1
A. Orøy et al. Demographic data for the 32 participants interviewed. Registered nurses
ICU-nurses
Head physicians
Senior residents
Hospital chaplains
No. Age Sex f m
8 27—46
8 35—48
8 40—50
4 30—40
4 50—60
7 1
8 0
6 2
2 2
2 2
Experience in ICU — average (year)
¾—16 y
5—15 y 7.2
9—18 y 14.6
2—4 y 3.3
4—6.5 y 5
4.7
critical care patients. The other provided post-operative and intensive care for neurosurgical patients. Between 1996 and 2005, the hospital had an average of 19 potential donors (range 11—29) per year. The total number of potential donors in Norway was 229 (range 116—185) during the same period (Rikshospitalet, 2003, 2005).
Ethical approval Ethical approval, license for collecting data, dispensation from professional secrecy, and permission to perform the study in the ICUs were obtained from the Regional Committee for Research Ethics, the Privacy Ombudsman for Research, the Ministry of Health and Care Services, and the Chief Physicians in the two ICUs, respectively. Written, voluntary, and informed consent was obtained from the healthcare professionals and families involved. Consent for audio recording was obtained from those being interviewed. To ensure confidentiality, identifiable information about the participants was omitted in the written material.
bedsides and in private. The observations were a continuous reflection of how the interactions with families were conducted. Her presence varied from being present for all stages of the approach to only being present either when questions were asked or in follow-up conversations. The researcher’s background as an ICU-nurse enabled her to understand healthcare professionals’ interactions with the families. Whereas the observations focused on how the healthcare professionals approached and conducted their interactions with the families, the in-depth interviews explored their personal experiences. Using an interview guide, open-ended questions were followed by in-depth questions related to the participants’ answers. The interviews were conducted one-to-one in the ICU (n = 26) or by phone (n = 6) as soon as possible after each case was observed. Data collection took place from April 2006 to October 2007. The total observation time for each situation varied from 12 to 94 hours. Field notes were carefully recorded. Each interview lasted from 25 to 150 minutes and was tape-recorded and transcribed verbatim.
Participants Data analysis The focus of the study was healthcare professionals’ interaction with families of critically ill patients with severe brain injuries. Professionals involved in 12 cases were observed. The number of persons in each case varied, and 32 of these (16 nurses, 12 physicians, and 4 hospital chaplains) were recruited for in-depth interviews (Table 1). The criterion for being interviewed was that they had been involved in interactions with the families when it had become clear that the patient would likely progress into brain death and that the subject of organ donation was to be presented to the family. This criterion was extended to include those involved after the subject was presented because the topic of organ donation was sometimes introduced outside of the ICU. The background of the different cases is described in Table 2.
Data collection Nurses or physicians notified the researcher when they had a potential case for the study. They also obtained consent from the families before the researcher became involved in the observations. The researcher obtained consent from the healthcare professionals, clarified her role, and followed them in interactions with families both by the patients’
A thematic analysis (Benner, 1994; van Manen, 1990) was used to grasp the meaning of the participants’ experiences. Benner describes in detail how to perform the analysis. First, observation notes and interview transcripts were read to obtain a sense of whole. Then, preliminary themes were sought and labelled in the notes and transcripts. The preliminary themes from both datasets were compared, and three main themes with sub-themes representing patterns of meaning emerged. The analysis was performed manually and formed a dialectic process between the whole and the parts in the notes and transcript. The interpretation was guided by the research questions, the researcher’s pre-understanding and the two co-authors’ critical questioning. Fig. 1 illustrates the analytical process. The main themes identified in the analysis were crucial timing, challenging conversations, and conflicting expectations (Fig. 2).
Findings The subject of organ donation was, in most cases, presented when the patient’s condition was likely to progress to brain death. Whereas the physicians played the main role in timing
Approaching families on the subject of organ donation Table 2 No.
1
205
Background to the 12 different cases — potential donor, family and healthcare professionals.
Diagnosis of the patient
CI
Unit — where the question was asked
Family members present
Observations
Interviews
Healthcare professionals involved in each case observed
Healthcare professionals interviewed
ICU
Spouse
ICU-physician Registered nurse ICU- nurse
1 ICU-physician 1 Registered nurse 1 ICU-nurse
ICU-physicians Neurosurgeons Registered nurses ICU-nurses Hospital chaplain
1 1 1 1
ICU-physician Registered nurse ICU-nurse Hospital chaplain
2
ICH
ICU
Spouse, sister in-law, small children, father & brothers
3
ICH
The question was not asked
Sisters and brother
ICU-nurses Registered nurses Neurosurgeon
4
ICH
ICU
Husband, son & daughter in law
Neurosurgeon Registered nurse ICU-physician
1 Neurosurgeon 1 ICU-physician 1 Registered nurse
5
ICH
ICU
Husband, daughter, sons & grandchildren
Neurosurgeon Registered nurses ICU-nurses
1 Neurosurgeon 1 Registered nurse 2 ICU- nurses
6
ICH
Emergency unit
Husband, daughters, son, partners
ICU-physicians Registered nurses
1 ICU-physician 1 Registered nurse
7
ICH
Ward
Wife & sons
ICU-physicians Hospital chaplain
1 ICU-physician 1 Hospital chaplain
TBI
ICU
Mother, father, daughter, sister & brothers with partners, aunt & uncle
ICU-physicians Neurosurgeon Registered nurses ICU-nurse Hospital chaplain
1 1 2 1
9
TBI
By the spouse — on the phone
Spouse, small and adult children with partners & child
Neurosurgeon ICU-physicians Registered nurse Hospital chaplain
1 ICU-physician 1 Registered nurse 1 Hospital chaplain
10
ICH
ICU
Sisters, brother in law
ICU-physicians ICU-nurse
1 ICU-physician 1 ICU-nurse
11
ICH
Local hospital — ICU
Spouse, son and daughters
Neurosurgeons ICU physicians ICU-nurses Registered nurses
1 ICU-physician 1 ICU-nurse
12
ICH
The question was not asked
Sons, daughter, ex-husband, child
Neurosurgeons ICU-physician Registered nurses
1 ICU-physician 1 Registered nurse
8
ICU-physician Registered nurse ICU-nurses Hospital chaplain
CI, Cerebral infarction; ICH, intracranial hemorrhage; TBI, Traumatic brain injury; OD, organ donation.
and raising the issue, the nurses were present during these conversations and subsequently followed up with the family. The hospital chaplains were not involved in bringing up the issue but were sometimes involved before or after the request. The differences in involvement are reflected in the way in which the quotations are distributed among the healthcare professionals.
Crucial timing Finding the best possible time to address the subject was reported as being challenging, but it was of crucial importance to approach the family without causing distress. Ideal timing seemed to occur when the healthcare professionals approached the family with information, when the
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A. Orøy et al.
From approaching family on the subject of organ donation
Condenced description from fieldnotes
Quote from interview that illustrates
The physician introduced himself, went through the development in patient’s condition - step by step. After this information – there was a break –than he said to the family – I have a difficult subject to bring up; and the daughter spontaneous expressed – I know what it is – it’s about taking organs – The physician nods ……
…she had insight, and had thought about it on beforehand. I think she immediately understood what I wanted to ask about. I have only positive experience with this conversation I have been in situation when the family have been upset, and had no interest in discussing the subject.
Figure 1
Preliminary theme
Info about the severity in situation Raising the issue Shared understanding Successful approach Possible to go wrong
Interpretations of observations and interview
The subject was brought up with information about the development in patient’s condition. It seems like the physician had a strategy for approaching the family: after the question, he had a break and gave the family” time and space” to reorient themselves – and the daughter spontaneous verbalised that she understood what this question was about.
Main theme and sub-theme
The crucial timing -Ideal timing
From other cases, this physician knew that the family might be upset and have no interests of discussing the subject. The time for bringing up the subject seemed to be ideal – the family was prepared by the information, they understood what he wanted to ask about and they also put the first words to the subject. The physician might confirm the family’s understanding….. This pattern was also observed or described by participants from other cases. While the physician in the present example told about positive experiences with the conversation, other used the word timing, perfect or ideal to describe the way of bringing up the subject.
Illustration of the analytical process CASE 5.
family was ‘‘ready’’, and when the subject was brought up as a response to the family’s questions. In reality, however, certain pitfalls related to timing were experienced, such as an unpredictable patient situation or a miscalculation on the part of the healthcare professional in presenting the subject ‘‘too soon’’.
Ideal timing The timing was based on the physicians’ assessment of the particular situation. Some emphasised that the timing depended on the situation and on whether the family was ‘‘ready’’: ‘‘. . .The crucial point is when you present the subject. This depends on the family and, in a way; they have to be ‘‘ready’’. The immediate reactions and the shock from the first message must have abated. You cannot present this in a ‘‘subordinate clause’’. I think it is best to present the subject separately in a conversation dealing solely with this issue. If not, the family may get the impression that we [. . .] just want the organs, that we are ‘‘vultures’’ hunting for organs. . .’’ (Physician-4). This quote illustrates the physician’s awareness of sensitivity, the significance of a gradual approach, and the potential for a perceived conflict of interest if the topic of donation is presented before the family is ready. In this and similar situations, the subject was presented as a response to the families’ questions:
‘‘. . .I got the conversation on the track I wanted, delivered my message, and waited for the family to reorient themselves. They then asked: ‘‘What do we have to do?’’ That was the time for going on because I felt they were listening again. I said there were two possibilities. We could withdraw, but we could also fulfil her last wish. . .if her last wish was donation, and it was. They had talked about it. . .’’ (Physician-1). According to this physician, the timing was ‘‘ideal’’. Using a short pause in the conversation, he gave the family ‘‘time and space’’ to reorient themselves. When the family asked, ‘‘What do we have to do?’’, he seized the moment and explained the possibilities. The time for bringing up the subject was guided by the family’s questions and their ‘‘readiness’’ to proceed. ‘‘Too early’’ timing Despite the clinical and objective signs of a bad prognosis, the progress of a patient’s condition was not always predictable. The situation was sometimes ‘‘misread’’ and the subject presented ‘‘too early’’. In one case, the patient’s condition unexpectedly ‘‘improved’’ after the subject was presented. The healthcare professionals later disagreed about the timing of this situation. In another case, one patient was transferred to the university hospital for further tests and treatment after the subject of donation had been presented to the family at the local hospital. Healthcare professionals at the university hospital found this to be an extraordinary situation and argued that such timing was inappropriate:
Approaching families on the subject of organ donation
‘‘There is no automatic way to act. . . You learn some ‘‘trick or other’’, but the situation is new and painful each time. . .more painful the younger the patient is, especially if the patient is a child. . .It is awful if young children are present. Then I sit at the bedside and imagine these are my own children crying. . .’’ (Physician-1).
Data analysis
Crucial ming
Challenging conversaons
Ideal ming
Preparing for a unique situaon
"Too early" ming
Delivering the bad news
207
Conflicng expectaons
External expectaons
Internal expectaons
Respecng the paent's wishes
Respecng families' decision
Figure 2 Illustration of the main themes with sub-themes identified in the analysis.
‘‘The harm was already caused when the patient came to our ICU. Such events leave lasting impressions. It was completely wrong and discredited the system. For the family, this was an awful situation. . .’’ (Physician-11). Although there seemed to be agreement about the timing within the situation, there was sometimes subsequent disagreement. This finding illustrates the complexity of donation situations, and that raising the issue too early is inappropriate and may cause the relatives to question whether the professionals have the patient’s best interests at heart.
Challenging conversations Donation situations and conversations were experienced as being challenging by the healthcare professionals. They recounted difficult events, usually with several family members present, and sometimes with children involved. Some said they tried to maintain a continuity of staff, but they were involved in different parts of the process and sometimes such a conversation was the first meeting with the family. Preparing for a unique situation Despite the subject being the same, each situation was unique, and the healthcare professionals had to adapt to each situation:
Some nurses stated that the situation was determined by the people involved, healthcare professionals and relatives alike: ‘‘The question is what do we do and how do what we do. That’s also the challenge. Hence, we cannot have procedures’’ (Nurse-1). Most physicians reported that they prepared themselves before meeting the family. They read the medical record, considered possible ways of saying things, or collaborated with colleagues or nurses. Some stated that it was difficult to find enough time to prepare, especially when the shift was busy. Although collaboration generally worked well, the nurses sometimes looked for greater involvement and presence from the physicians: ‘‘He should have contacted me. The situation would have been quite different if we had talked together before we met the family (. . .) I prefer planning and predictability’’ (Nurse-9). This report illustrates the significance of collaboration to ensure the situation’s predictability for those involved. Delivering the bad news A pattern emerged in the healthcare professionals’ approach to families. The physicians were calm and polite, shook hands and usually sat down facing the family. They attempted to establish a dialogue, and after a short introduction, they carefully broke the bad news. The following was a typical situation: ‘‘Physician:. . .Unfortunately there is a new turn in his condition. . .I don’t think this will end well. . .We have considered different types of treatment. . .We can do some surgery and decrease the intracranial pressure (ICP) by opening his skull. . .However, I am afraid this step will prolong an on-going process. He may survive, but I don’t think this will lead to a life with dignity. Mother: What can we do? What will happen? Physician continued:. . .I think the ICP will increase so much that the blood circulation in the brain will stop. . .This is what we call brain death. . . In this situation, it is relevant to raise an issue that some consider brutal, the issue of organ donation. . .’’ (Field notes-8). In this and other conversations, the physicians were open and honest about the patient’s condition, and sought to help the families realise that the patient most likely would die or progress into brain death. They explained the process of brain death and focused on the patient’s inability to recover from the catastrophic brain injury. Shared understanding of the situation seemed necessary before organ donation was brought up as an option. Information about the criteria for death and a donation process was sometimes conducted in this or in follow-up conversations. They tried to use everyday
208 language. The nurses generally listened during the conversations and subsequently addressed the family’s responses and questions, when necessary. Respecting the patient’s wishes The physicians were mainly interested in the patient’s attitude towards organ donation. They asked whether the family had ever spoken about donation, if they were familiar with the patient’s wishes, or whether the patient had expressed a negative attitude towards donation. Respect for the patient’s wishes was emphasised: ‘‘Our task as physicians in the ICU is not to get many donors but to ask all families in such a way that they feel free to inform us of the patient’s view. A ‘‘no’’ is just as good as a ‘‘yes’’ (. . .). The premise for the family’s answer must be the patient’s wish’’ (Physician-1). The healthcare professionals spent time in conversations with the family and also gave them time to discuss the subject. However, making a decision on behalf of the patient was sometimes difficult. When the nurses or at times the hospital chaplains, detected doubt or disagreement within the family they collaborated with the physicians. Some gave the family more information and others tried to help them to understand the patient’s viewpoint:
A. Orøy et al. ‘‘I had never met the family before (. . .). Despite that I trust my colleagues; I like to speak with the family myself. It’s about my experiences. Sometimes we have been too ‘‘quick’’ and it was not like we thought. . .’’ (Physician-10) Cases with the involvement of several persons illustrate the significance of clarifying a family’s decision before a donation is conducted.
Conflicting expectations Both external and internal expectations were registered in relation to raising the issue of organ donation. External expectations arose from legislation and policy. Internal expectations arose from the healthcare professionals’ respect for the family’s wishes and an altruistic attitude. Hence, conflicting meanings related to presenting donation as an option were present. External expectations Expectations from the environment might increase the pressure in an already sensitive and pressured situation: ‘‘I said to my colleague we had to bring up the subject with the family. I don’t think he was ‘‘happy’’ with the idea (. . .) I think he felt it was burdensome, as he had to both speak with the family and make the decision about withdrawing’’ (Physician-6).
‘‘In such cases, we have to get at the patient’s viewpoint. What did he want? They thought he would have consented to a donation. . . It seemed to me as if these words were a relief, as if I took a burden from their shoulders. . .’’ (Physician-8).
In other situations, nurses felt conflicted over the dualpurpose call for relatives to come when the patient’s condition was critical:
By moving the focus of the decision from the family to the patient, this physician helped the family decide. The hospital chaplains might also be involved in the decision-making:
‘‘I had to phone the relatives several times (. . .) I felt it was because they (physicians) had an important question to ask and not primarily because we wanted the family to be present’’ (Nurse-5).
‘‘The mother felt alone (. . .) I brought up the subject with the whole family. When the daughter said that a donation would be in accordance with the father’s view, the mother agreed and the situation seemed to be easier for her. . .’’ (Chaplain-9). Respecting the families’ decisions There was a culture of respecting the families’ decisions whether or not they consented to donation. No healthcare professional wanted to influence the family’s decision but wanted a decision in accordance with the patient’s or family’s wishes: ‘‘There was some personal thing in the family, and donation was neither in contrast with the patient’s wishes. For me, this issue is important, as I felt the family’s consent was based on their own and patient’s wishes and not of duty’’ (Nurse-5). In general, several hours passed after the subject of organ donation was introduced before the patient’s condition developed into brain death and death was confirmed by cerebral angiography. Together with this final announcement, the physicians generally obtained a family’s consent or refusal or repeated their decision:
Indignation expressed:
concerning
the
legislation
was
also
‘‘According to legislation, there is no requirement about family consent. One physician says we can remove organs without asking the family. I mean, we have to ask (. . .) to stop asking will not serve the donation activity. If we want organs, we have to act carefully. Response from the public will be strong if we stop asking’’ (Nurse-1). Internal expectations Although the healthcare professionals were aware of the significance of organ donation, some had conflicting feelings. One physician stated that he felt positively about donation but that it was also a difficult and unpleasant subject to address: ‘‘First, you announce the shocking news, and then you want something back. You somehow force the family to give a statement. When you are in ‘‘shock’’ you want privacy, but in these cases, the physicians ask the family to make quick decisions’’ (Physician-5). This conflict was also reported by several nurses: ‘‘For me, this is an inhuman question to ask. I feel it is brutal in such a situation. At the same time, I see the
Approaching families on the subject of organ donation benefit for those who need the organs and get a new life and the importance of the family’s consent’’ (Nurse-5). The healthcare professionals were trained to help others. When there was no hope for the patient’s recovery, they voiced a desire to help other critically ill patients through donation. This action was described as being meaningful: ‘‘In such a meaningless situation, helping seven others is fabulous’’ (Nurse-2). ‘‘Family consent is a triumph and imbues the situation with some meaning. There is a positive atmosphere in the unit when you succeed’’ (Physician-4). Although the healthcare professionals felt that helping others was meaningful, some were challenged by conflicting emotions: ‘‘The day after, I felt the situation complicated — I almost felt ‘‘schizophrenia’’ by thinking of the seven who got life in gift. Moving between the two focuses. . .’’ (Hospital chaplain-2). Despite the healthcare professionals’ expressed respect for the family’s decision, some confessed that a refusal might be a challenge: ‘‘I feel lucky when we succeed, and it’s a pity when we don’t. . . could I perhaps have followed up family better, been a driving force towards donation? On the other hand, the meaning is not the outcome. The meaning is being there for someone. . .’’ (Physician-6). Overall, the healthcare professionals wished to help the families through these difficult situations in the best manner possible.
Discussion Approaching families regarding the subject of organ donation represents a challenge to healthcare professionals. Findings reveal that the issue was raised with information about the patient’s clinical condition and progress. The challenge was to find the best possible time and to address the issue in a comprehensive, respectful, and meaningful manner, as required by regulations (The Ministry of Health and Care Services, 2008). Generally, the patient’s condition worsened within a few hours or days, and the healthcare professionals had little time to get to know and prepare the family. The short timeframes and the sensitive nature of the situations made the timing and the conversations challenging, and required watchfulness and concentration from those involved. Although the physicians’ training varied, all had some experience with the challenges involved in delivering bad news. They were attuned to the particular situation, and dialogue seemed important for sensing when the family was ‘‘ready’’ to be approached. This seemed to be more challenging when they were involved late in the process because of staffing changes. The significance of providing understandable information and the manner of the request was emphasised by the healthcare professionals in this study and by families in other studies (Haddow, 2004; Jacoby et al., 2005; Long et al., 2006; Sanner, 2007).
209 The healthcare professionals were primarily interested in the patient’s view on organ donation, a focus that at times reduced the relatives’ burden. This finding corresponds with legislation (The Ministry of Health and Care Services, 2008) and with studies reporting that knowledge about the deceased’s wishes influences the consent rate (Rocheleau, 2001; Siminoff et al., 2007; Sque et al., 2005). Respect for the patient’s wishes and the family’s autonomy was emphasised. According to Knopp et al. (1996), this consideration is important, as it gives the family a sense of control. The timing sometimes seemed more challenging in certain situations than in others. Inappropriate timing may worsen the situation, and the family can question whether the healthcare professionals are more interested in the organs than in the patient’s care. Although the participants did not explicitly mention the donation rate related to timing, this approach was taken in other studies. Gortmaker et al. (1998) found that a ‘‘decoupled’’ approach to the family increased the donation rate. In practice, this means that the family is notified of the death by one physician and asked for the consent to donate by another, a situation which is not necessarily best for the family (Marks et al., 2006). According to Siminoff et al. (2002), the timing had only a weak effect on the family’s decision. These authors emphasised the process of discussing donation with the family rather than portraying the request as an event occurring at a single point in time. Based on the organ shortage and long waiting lists in Norway, healthcare professionals are mandated by regulations to ask for the consent to donate. Qualities such as empathy and communication skills are required of those involved (The Ministry of Health and Care Services, 2008). The main impression from our study is that healthcare professionals approached the subject with respect and empathy. Generally, empathy is associated with humaneness, equality, respect, and solidarity (Wackerhausen, 1998), as well as understanding. Although the healthcare professionals had the best intentions, we sensed ambivalence related to a family’s possible refusal. Empathy is crucial in guiding the families through the patient’s treatment and may ease their situation, resulting in respect for the decision, whatever the answer. However, according to regulations, healthcare professionals are encouraged to address the question in a manner that contributes to consent. If the family consents as a result of the healthcare professionals’ empathic attitude, there is no assurance that the decision is a result of the patient’s or the family’s free will. However, according to Wackerhausen (1998), empathy is often a means to ‘‘something else’’, not necessarily something positive. If the healthcare professionals are not aware of the power in the caring relationship (Henriksen and Wetlesen, 2006) they may be working to obtain presumed consent instead of informed consent. In the eagerness to accommodate the system, one runs the risk of empathy becoming a strategy to increase the donation rate. Empathy may then turn into empathy of power (Wackerhausen, 1998), and may be regarded as a strategy because it is used as a means and not as an end. The ambiguity of the existing regulations opens up the possibilities of realising the power of empathy. Although respect for patient’s wishes and families autonomy was a strong value among the participants,
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they were not indifferent to the results. Some considered it a success when a family consented to donation and asked themselves whether they could have conducted things in a different manner when a family refused. Helping others by organ donation was mainly considered meaningful when there was no hope of recovery for the present patient. According to Benner and Wrubel (1989), we involve ourselves in the world because things matter to us and grasp situations directly in terms of the meaning for ourselves. Because of the vulnerability involved in these situations, there is a risk of causing distress. Despite the best intentions of healthcare professionals, the request may be perceived as inappropriate. In such a case, both the family and the healthcare professionals will suffer. Therefore, healthcare professionals have to carefully balance their obligations towards the family’s decisions and those to the critically ill persons waiting for life-saving organs. Our findings illustrate the paradoxical situation of explaining brain death and discussing organ donation with families. Annas (1988) describes the paradox as follows:
patient wishes and family decisions was an expressed value among the participants, but conflicting expectations related to raising the subject were also present. During the process, the healthcare professionals were faced with contradictory considerations. On the one hand, they wanted to support the family regardless of their decision. On the other, they had a duty to obtain consent for donation. Ideally, the healthcare professionals wished to balance respect for the family’s decision with concern for the patients awaiting lifesustaining organs. This ideal is difficult to attain due to the slight bias of the regulations in favour of the patients waiting for organs. If the healthcare professionals are not aware of the power imbalance in the caring relationship, they may be working to obtain presumed consent instead of informed consent. Accordingly, an increased awareness related to this requirement in the regulations seems necessary to prevent manipulation.
‘‘It is the requirement of death of one person before life of another can be saved or improved, that makes organ transplantation unique, and that ensures that the attitudes of both public and healthcare professionals toward it will always be profoundly ambivalent’’ (Annas, 1988, p. 622).
AO completed data collection, analysis, drafting of the manuscript and study design with the help of KES and EG, who contributed to analysis and a critical revision of the article.
Twenty-five years later, this process still remains a challenge.
Contributions
Conflict of interest statement The authors report no conflicts of interest related to the article.
Strengths and limitations Funding Through the methods chosen, the researchers came close to the situation and the healthcare professionals’ experiences. Whereas the interviews provided insight into the participants’ experiences, the observations contextualised the interviews and placed them into perspective. This combination also increases the trustworthiness of the study’s findings. Methodologically, in interpretive phenomenology there is no clear endpoint to the interpretations. A tenet is that there can always be another and most likely deeper interpretation (Leonard, 1994). However, competing interpretations do not necessarily negate one another, but rather allow for further exploration of the phenomenon. Because the subject of organ donation was sometimes introduced before the researcher was involved, limitations arose relating to the researcher not being present at all the meetings, and that all involved were not interviewed. Because the participants were recruited from one Norwegian hospital, there may be both national policies and cultural limitations related to the transferability of the findings.
Conclusion Both nurses and physicians were involved in approaching families regarding the subject of organ donation. The physicians played the main role with regard to timing and raising the issue. The situation was sensitive in nature, and finding the best possible time to address the issue in a respectful and meaningful manner presented a challenge. Respecting
The study is funded by Molde University College, The Norwegian Nurses Organization and The Nordmøre and Romsdal Health Trust. The sponsors have no role in the study.
Acknowledgements We are grateful to the study’s participants for willingly including us in the world of critical illness and organ donation and for sharing their experiences with us. We also want to thank Garrett Chan from the Nursing School of the University of California, San Francisco (UCSF) for his help with critical revisions to the article.
References Alnæs AH. Erfaringer fra akutte organdonasjoner [Experiences from acute organ donations]. Omsorg 2000;17:35—40. Annas GJ. The paradoxes of organ transplantation. Am J Public Health 1988;78:621—2. Benner P. Interpretive phenomenology: embodiment, caring and ethics in health and illness. Thousand Oaks, CA: SAGE Publications; 1994. Benner P, Tanner CA, Chesla CA. Expertise in nursing practice. Caring, clinical judgment and ethics. New York: Springer Publishing Company; 1996. Benner P, Wrubel J. The primacy of caring. Stress and coping in health and illness. Menlo Park, CA: Addison-Wesley Publishing Company; 1989.
Approaching families on the subject of organ donation Blok G, Morton J, Morley M, Kerckhoffs C, Kootstra G, van der Vleuten C. Requesting organ donation: the case of self-efficacy. Effects of the European Donor Hospital Education Programme (EDHEP). Adv Health Sci Educ Theory Pract 2004;9:261—82. Blok G, van Dalen J, Jager K, Ryan M, Wijnen R, Wight C, et al. The European Donor Hospital Education Programme (EDHEP): addressing the training needs of doctors and nurses who break bad news, care for the bereaved, and request donation. Transpl Int 1999;12:161—7. Castellana T, Burallò N, Gonzalo R, Barreto M, Guilera E, Dìez J, et al. Health care professionals: what do they know about organ donation? Prog Transplant 2008;18:141—5. Coyle M. Meeting the needs of the family: the role of the specialist nurse in the management of brain death. Intensive Crit Care Nurs 2000;16:45—50. Crowe S, Cohen E. Organ transplantation policies and policy reforms; 2006. Available from: http://bioethics.georgetown. edu/pcbe/background/crowepaper.html [accessed 12.04.02]. Dreyfus HL. Being-in-the-world: a commentary on Heidegger’s Being and Time, Division 1. Cambridge, UK: The MIT Press; 1991. Fangen K. Deltagende observasjon [Participant observation]. Bergen: Fagbokforlaget; 2010. Gortmaker SL, Beasley CL, Sheehy E, Lucas BA, Brigham LE, Grenvik A, et al. Improving the request process to increase family consent for organ donation. J Transpl Coord 1998;8:210—7. Haddow G. Donor and nondonor families’ accounts of communication and relations with healthcare professionals. Prog Transplant 2004;14:41—8. Hartwell L. Global organ donation policies around the world; 1999. Available from: http://lorihartwell.net/fileadmin/pdf/ GlobalOrganDOantionPolicies.pdf [accessed 12.04.02]. Heidegger M. Being and time. San Fransisco: A Division of HarperCollinPublisher, HarperSanfransisco; 1927/1962. Henriksen J, Wetlesen A. Nærhet og distanse. Grunnlag verdier og etiske teorier i arbeid med mennesker [Closeness and distance. Values and ethical theories in working with human beeings]. Oslo: Ad Notam Gyldendal; 2006. Jacoby LH, Breitkopf CR, Pease EA. A qualitative examination of the needs of families faced with the option of organ donation. Dimens Crit Care Nurs 2005;24:183—9. Knopp R, Rosenzweig S, Bernstein E, Totten V. Physician—patient communication in the emergency department. Part 1. Acad Emerg Med 1996;3:1065—9. Kvale S. Interview. En introduktion til det kvalitative forskningsinterview [An introduction to the qualitative research interview]. København: Hans Reitzels Forlag; 1997. Lawson A. Presumed consent for organ donation in the United Kingdom. Intensive Care Soc 2008;9:116—7. Leonard V. A Heideggerian phenomenological perspective on the concept of person. In: Benner P, editor. Interpretive phenomenology: embodiment, caring, and ethics in health and illness. Thousand Oaks, CA: SAGE Publications; 1994. Lien B, Brekke A, Flatmark A. Organdonasjon fra avdøde givere i Norge 1993—96 [Organ donation from deceased donors in Norway 1993—1996]. Tidsskr Nor Laegeforen 1998;118:1550—3. Long T, Sque M, Payne S. Information sharing: its impact on donor and nondonor families’ experiences in the hospital. Prog Transplant 2006;16:144—9. Marks WH, Wagner D, Pearson TC, Orlowski JP, Nelson PW, McGowan JJ, et al. Organ donation and utilization, 1995—2004: entering the collaborative era. Am J Transplant 2006;6:1101—10. Meyer K, Bjørk I. Change of focus: from intensive care towards organ donation. Transpl Int 2008;21:133—9. Orøy, A., 2002. Døden i livets tjeneste: en fenomenologisk studie av pårørendes opplevelser og erfaringer i forbindelse med spørsmålet om organdonasjon (Death and its gift to life: a phenomenological study of families’ experiences with the question
211 about organ donation). Master thesis. Bergen: University of Bergen. Orøy A, Strømskag K, Gjengedal E. Interaction with potential donors’ families: the professionals’ community of concern — a phenomenological study. Int J Qual Stud Health Well-being 2011;6:1—11. Pellereiaux B, Roels L, Van Deysne D, Smiths J, Cornu O, Delloye C. An analysis of critical care staff’s attitudes to donation in a country with presumed consent legislation. Prog Transplant 2008;18:173—8. Price DPT. Legal framework governing deceased organ donation in the UK. Br J Anaesth 2012;108(S1):i68—72. Rikshospitalet. Organdonasjon og transplantasjon årsrapport 2003 [Organ donation and transplantation, annual report 2003]. Oslo: Rikshospitalet; 2003. Rikshospitalet. Organdonasjon og transplantation årsrapport 2005 [Organ donation and transplantation, annual report 2005]. Oslo: Rikshospitalet; 2005. Rithalia A, McDaid C, Suekarran S, Norman G, Myers L, Sowden A. A systematic review of presumed consent systems for deceased organ donation. Health Technol Assess 2009;13:iii, ix—xi, 1—95. Rocheleau C. Increasing family consent for organ donation: findings and challenges. Prog Transplant 2001;11:194—200. Rosenblum A, Horvat L, Siminoff L, Prakash V, Beitel J, Garg A. The authority of next-of-kin in explicit and presumed consent systems for deceased organ donation: an analysis of 54 nations. Nephrol Dial Transplant 2012;27:2533—46. Sadala M, Lorencon M, Cercal M, Schelp A. Caring for organ donors: the intensive care unit physicians’ view. Heart Lung 2006;35:190—7. Sanner MA. Two perspectives on organ donation: experiences of potential donor families and intensive care physicians of the same event. J Crit Care 2007;22:296—304. Siminoff LA, Lawrence RH, Zhang A. Decoupling: what is it and does it really help increase consent to organ donation? Prog Transplant 2002;12:52—60. Siminoff LA, Mercer MB, Graham G, Burant C. The reasons families donate organs for transplantation: implications for policy and practice. J Trauma 2007;62:969—78. Sque M, Long T, Payne S. Organ donation: key factors influencing families’ decision-making. Transplant Proc 2005;37:543—6. The Ministry of Health and Care Services. Circular I-6/2008. Regulations concerning organ donation and consent (in Norwegian); 2008. Available from: http://www.regjeringen. [accessed no/upload/HOD/HRA/Rundskriv%20I-6%202008.pdf 12.04.02]. The Transplant Act. Act relating to transplantation, hospital autopsies and donation of bodies etc. February 9, 1973 No. 6; 1973. Available from: http://www.lovdata.no/all/hl-19730209-006. html [accessed 12.04.02]. Thomas SL, Milnes S, Komesaroff PA. Understanding organ donation in the collaborative era: a qualitative study of staff and family experiences. Intern Med J 2009;39:588—94. van Manen M. Researching lived experience. Human science for an action sensitive pedagogy. Canada: The Althouse Press; 1990. Voo TC, Campbell AV, de Castro LD. The ethics of organ transplantation: shortages and strategies. Ann Acad Med Singapore 2009;38:359—66. Wackerhausen S. Den gode vilje og magtens empati. In: Hansen H, editor. Omsorg, krop og død: en bog om sygepleje [Caring, body and death: a book concerning nursing]. Copenhagen: Gyldendalske Boghandel Nordisk Forlag A.S.; 1998. Wadel C. Feltarbeid i egen kultur [Fieldwork in your own culture]. Flekkefjord: Seek A/S; 1991. Williams MA, Lipsett PA, Rushton CH, Grochowski EC, Berkowitz ID, Mann SL, et al. The physician’s role in discussing organ donation with families. Crit Care Med 2003;31:1568—73.