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Abstract
Background Physician trainees in neonatology can find it extremely challenging to care for patients from diverse linguistic and multicultural backgrounds. This challenge is particularly highlighted when difficult and ethically challenging end-of-life (EOL) decision-making with parents is required. While these interactions are an opportunity for growth and learning, they also have the potential to lead to misunderstanding and uncertainty and can add to trainees’ insecurity, unpreparedness and stress when participating in such interactions.
Objectives To explore the challenges for trainees when EOL decisions are undertaken and to encourage them to reflect on how they might influence such decision-making.
Design and interview An in-depth, semi-structured interview guide was developed: the interview questions address trainees’ beliefs, attitudes, preferences and expectations regarding discussions of EOL neonatal care. Twelve interviews were completed and the audio records transcribed verbatim, after removal of identifying personal information.
Results Participants identified six domains of challenge in EOL care: withdrawal of life-sustaining treatment based on poor outcome, explaining ‘no resuscitation options’ to parents, clarifying ‘do not resuscitate (DNR)’ orders, empowering families with knowledge and shared decision-making, dealing with different cultures and managing personal internal conflict. Participants experienced the most difficulty during the initial stages of training and eventually reported good knowledge of the EOL care process. They had a sense of security and confidence working within a multidisciplinary care team, which includes experienced nursing staff as well as bereavement and palliative care coordinator within the neonatal intensive care unit.
Conclusions The challenges experienced by physician trainees when providing EOL care can serve as focal points for improving EOL educational programmes for neonatal fellowship training.
- End-of-life
- Infant
- Physician
- Toronto
- Trainee
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What is already known on this topic
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It is common for healthcare professionals, particularly trainees, to indicate limited comfort with discussions surrounding end-of-life (EOL) care. Graduating neonatology fellows are highly trained in the technical skills necessary to care for critically ill and dying neonates, but are inadequately trained in the communication skills that families identify as critically important when facing EOL decisions.
What this study adds
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This study revealed six themes that reflected the challenges in EOL care. These were: (1) withdrawal of life-sustaining treatment based on poor outcome, (2) explaining ‘no resuscitation options’ to parents, (3) clarifying ‘do not resuscitate’ orders, (4) empowering families with knowledge and shared decision-making, (5) dealing with different cultures and (6) managing personal internal conflict. These can serve as focal points for improving EOL educational programs for neonatal fellowship training.
Background
Physicians who come to train in neonatology in Toronto are from diverse cultural backgrounds. Over the past 5 years, trainees have originated from 25 different countries, representing almost every continent in the world (Martin Skidmore, Program Director, Neonatal-Perinatal Fellowship Program, University of Toronto, 2008). As Canada itself is a country of many races and cultures, it can be a challenge to relate and care for this culturally diverse patient population. Physicians are expected to provide care that excludes stereotypes, prejudices and biases and includes openness to and respect for difference. In such a cross-cultural patient–provider relationship, both parties may be called upon to acknowledge and respect health concepts and practices different from their own. While this is an opportunity for growth and enrichment, it has the potential to lead to misunderstanding and subsequent problems.1 Common responses to the unknown or unfamiliar are anxiety, wariness and even anger or fear. This is likely to be even more pronounced when the healthcare issues to be dealt with are those concerning end-of-life (EOL) decision-making.2
In the specific context of severely ill newborn infants who may have very poor predicted prognoses and in whom EOL decisions may be required, concepts of illness and death are invariably understood and experienced within a complex web of cultural meanings.3 The stress of parents in this context is well recognised,4 but far less is known of that of the healthcare provider. According to Morrison,5 physicians might avoid EOL conversations because they (a) fear causing pain and bearing bad news, (b) lack knowledge of advance directive laws and training in delivering bad news, (c) view death as an enemy to be defeated, (d) anticipate disagreement with the patient or family, (e) have medical-legal concerns and (f) feel threatened by such discussions. This may be even more pronounced in physician trainees who may not have had prior experience in this aspect of neonatal care.
It has been shown that physicians are less likely to initiate EOL discussions when they believe they lack the needed interpersonal skills.2 Recently, these skills have been receiving more attention in medical training; EOL education has been enhanced and integrated into curricula of many residency and fellowship training programmes.6–9 There is agreement that outcomes in EOL care are strongly related to communication between clinicians and patients,10 and numerous training programmes exist to address skill deficits. However, no matter how dedicated and interpersonally skilled physicians are, family, spiritual, ethical, cross-cultural, practical and existential issues are becoming increasingly important in EOL care and present formidable challenges to physicians’ skills and expertise. It is unknown how these challenges are perceived by trainees in a Canadian healthcare environment.11
In Toronto neonatal intensive care units (NICUs), EOL discussions are led by the attending neonatologist, with trainees observing wherever possible. Ideally, parents are present and other family members are invited to attend, subject to parents’ wishes. Trainees in their more senior years of training may be required when they are on-call, particularly at night, to discuss goals of care, and the conversation may involve embarking on a palliative care approach, especially in acute situations. In these situations, support from the attending neonatologist is always available.
In order to provide optimal cross-cultural care, trainees in neonatology from any country or cultural background must be sensitive to the socio-cultural beliefs that influence decisions affecting EOL care. There are no studies on the experience of trainees from diverse cultural backgrounds regarding EOL decision-making in the NICUs of countries in which they are becoming acculturated. This highlights the importance of the present study which used semi-structured interviews to explore the ways in which postgraduate physician trainees from diverse cultural backgrounds, including Canadian, experience the challenges in Toronto NICUs when EOL decisions are made.
Methods
A qualitative interview study of the EOL experiences of physician trainees in the Neonatal-Perinatal Fellowship Training Program at the University of Toronto was undertaken. This approach was chosen in order to register aspects of complex attitudes and interactions, which quantitative methods are unable to reflect.12 Postgraduate physician trainees in neonatology were eligible to participate if they had been in their Clinical Fellowship for at least 9 months in the hospitals provide neonatal care affiliated with the University of Toronto. Each trainee received a letter describing the study and 12 agreed to be interviewed. Approval was sought from the Hospital Research Ethics Board, which included a separate consent form ensuring confidentiality to participate in the study.
Data collection
An in-depth, semi-structured interview guide was developed specifically for the study. The interview questions addressed trainees’ beliefs, attitudes, preferences and expectations regarding discussions of EOL neonatal care. Interviews were audio-taped and conducted in a private room to ensure confidentiality.
Data analysis
Audio-recorded interviews were transcribed verbatim, and all identifying personal information was removed. Transcripts underwent content analysis, including concept saturation and theme generation.
The interviews were read through several times to obtain a sense of the whole. The text about the participants’ experiences of EOL decision-making was then extracted and combined into one text, which constituted the unit of analysis. The text was divided into meaning units that were condensed; the condensed meaning units were abstracted and labelled with a code. The whole context was considered when condensing and labelling meaning units with codes. The various codes were compared based on differences and similarities and sorted into subcategories and categories which constituted the manifest content. The tentative categories were discussed by two study researchers and revised, and a process of reflection and discussion resulted in agreement about how to sort the codes. Finally, the underlying meaning, that is, the latent content, of the categories, was formulated into a theme.13 Trustworthiness of emerging themes (rigor) was ensured through thick description in which adequate reference to quotes in the text demonstrated the presence of an emerging theme.14
Ethical considerations
Basic demographic data were collected from all participants. Data were summarised such that none of the participants could be recognised and none of their responses indicated identity. The data produced from this study were stored in a secure location, accessible by the principal investigator only. Care was taken to code instruments, tapes and transcripts in ways that maintained participant anonymity. Physician trainees were interviewed by a member of the study team who had previous experience in qualitative research and conducting interviews, but who did not know the participants (Sophia Mobilos BSc, Melissa Chan BSc, Judith Belle Brown PhD. Women in Medicine: The Challenges of Finding Balance, 2008).
Results
A total of 25 trainees were invited to participate in the study, 12 agreed to participate and all 12 were interviewed, at which point data categories were deemed saturated. Twelve audio-recorded interviews were completed between January and December 2009. All participants were neonatal subspecialty trainees at the University of Toronto. The majority of the participants were female, married, between the ages of 31 and 40 years; eight have children. Eleven stated that they had a moderate level of intrinsic religiosity. Eight had previous clinical experience in neonatology prior to joining the fellowship programme in Toronto, and of these three worked in a religious healthcare centre during those years. To our knowledge, these participants had not previously been part of a palliative care team; however, this was not specifically confirmed.
Analysis of the interviews revealed six themes that reflected the challenges in EOL care. These were: (a) withdrawal of life-sustaining treatment (WLST) based on poor outcome, (b) explaining ‘no resuscitation options’ to parents, (c) clarifying ‘do not resuscitate (DNR)’ orders, (d) empowering families with knowledge and decision-making, (e) dealing with different cultures and (f) managing personal internal conflict. Associated with each theme is a set of categories that further describe its meaning. Table 1 summarises the themes, the associated categories and examples from the coding frameworks.
Challenges in end-of-life decision-making
Withdrawal of life-sustaining treatment based on poor outcome
The first challenge identified was WLST based on poor outcome. Within this theme, three related categories were identified—deciding what is in the best interests of the infant, arriving at a consensus with parents and considering the therapeutic options available in the NICUs.
Trainees reported that quality of life is hard to define since it is different for each person and each family. Forming an opinion that serves the best interests of the infant while taking into consideration parents’ coping skills and acceptance is described as a major challenge. The hardest task seemed to be the activation of the parental vision of reality by bridging the gap between parents’ understanding of their infant's predicted poor outcome and their hopes and expectations. As one trainee stated,
What I might interpret as bad or poor quality of life may not be the family's opinion…When they make the decision to continue treatment that personally this is a baby that I would withdraw on, I do feel bad about the situation thinking that this baby is going to continue really suffering, having pain. The family can't see it the way I'm seeing it.
Consensus decision-making was appreciated as a process that sought agreement of participants and the resolution or mitigation of minority objections. One trainee summarised it well by quoting a mentor: “In the end, no one should feel like he/she made the decision. It is a shared decision”. When there is divergence of opinion, it leads to trainee anxiety and they often had trouble going forward with the proposed plan as this trainee shared,
It is only when I'm able to establish consensus from my whole team that I will go ahead. Then…I know that I am not the only one, the whole team has decided. I am a representative of the team and…I establish some balance of dealing with this issue, so I do not get into that kind of distress which I used to get.
In addition, many trainees with previous experience in neonatology expressed that the process of WLST was very different when compared to their home countries, and initially it may be distressing. Trainees expressed that in places they had worked previously resources limited their treatment options, and thus, they did not encounter the same types of scenarios that occur in Canada. Instead of aggressive intervention and then WLST when that form of care is no longer helpful or appropriate, they were often unable to offer the initial, cure-oriented, disease-modifying care, and so infants with poor prognoses often died before any discussions were held. They felt that families in Toronto tended to accept transition from life-extending care to palliative care only after using all technological interventions—making the whole process much longer. One trainee stated,
Here, they use all the technology they have. Once they reach the last end, they start discussing withdrawal…. It is totally different from back home where we didn't have the option to keep on supporting to the last minute. Here it is a longer process.
When addressing specific options of therapy available in EOL care, many trainees commented that withdrawal of nutrition and hydration was the hardest for them to participate in:
The nutrition thing I'm not comfortable with at all. I have been here for two years and I've heard a lot about it. Now I can hear…but I'm still not comfortable doing it and I don't think I'll be doing it. I'm not at that stage yet.
Explaining ‘no resuscitation options’ to parents
The second theme identified involved explaining ‘no resuscitation’ or ‘DNR’ options to parents when cardiopulmonary resuscitation (CPR) was deemed inappropriate. Trainees felt responsible for making parents aware of ‘DNR’ as an option when cure is no longer a realistic goal. However, they expressed hesitation and uncertainty at the initial stages of training. They realised parents needed information and guidance, and they (trainees) did not always have the answers, especially when talking with families about predictions of morbidity and mortality. As they relate in the quotations below, their ability improved with time, and generally towards the end of their training, they felt more comfortable discussing ‘DNR’ options with parents. Some examples of this sentiment follow:
I used to have that kind of hesitation earlier, but now I do my homework, i.e. I read a lot and I should be in my mind sure and comfortable that that's an option which is fine.
I'm more comfortable now. Definitely, became more comfortable over the years. I didn't know what to say. I wasn't sure. Usually the decision not to resuscitate is taken for cases where you shouldn't resuscitate. I'm comfortable with that.
Clarifying do not resuscitate orders
The third theme that reflects trainees’ challenge involved clarifying ‘DNR’ orders. ‘DNR’ orders can include a range of different yet related options from withdrawal or withholding life-sustaining treatment to not escalating current treatment or no CPR in the event of cardiac or respiratory arrest. This range of options clearly requires careful evaluation and judgment. Trainees felt that when they had not met the family it created ambiguity, especially for those who were covering when on call and who did not have a clear, stepwise framework for action. As they express below, the process of WLST can be confusing for families if not done with extreme skill, care and sensitivity.
“Do Not Resuscitate” orders”…every time we do it, it is left to the interpretation of the people of how to do it.
Empowering families with knowledge and explaining their role in a shared decision-making process
The fourth theme that emerged from the analysis was the challenge of empowering families with knowledge and explaining their role in a shared decision-making process. It was expressed that in many of international trainees’ home countries, a certain amount of paternalism and domination are the essence of physicians’ practice: families would go along with the physicians’ decisions and would not be as involved in the decision-making process. In Canada, trainees expressed difficulty when speaking to parents about EOL. They felt that parents might not always believe that EOL is most appropriate for their infant. In addition, in this emotionally charged situation, parents might not understand all the information even if it is explained to them and may be unable to make the decision that serves the best interests of their infant. They realised that when collaborative decision-making is difficult, there are resources that can be used, such as ethics consultation. Later on, trainees learned throughout their fellowships to assist families in obtaining all the medical information that the parents wanted and to accept parents’ role in decision-making.
Overall, trainees felt that communicating and collaborating with parents is a ‘positive thing’; however, they suggested that a degree of provider recommendation and parental guidance would be helpful without necessarily shielding parents from any unpleasant information or taking over their decisions.
I think sometimes we can be a little bit more definite in our guidance because that is a big decision for parents to actually make and to feel like they have to make. I don't think that is something I could ever decide to do. I don't even have kids and I can't imagine being told “Go home and think about it. Come and tell us what your decision is.”
Dealing with different cultures
The fifth theme trainees identified involved parents’ different cultures within the NICUs. Trainees varied when asked about their own cultural competence—defined as an ability to interact effectively with people of different cultures. Few felt that they had significant experience and knowledge of a variety of cultures, and most expressed that they knew very little. They all recognised that there is a need to learn about cultural expectations at the time of EOL discussions, as well as how to best support the cultural and religious needs of various families.
You will find people from every part of the world in Toronto so that makes it enriching for us as physicians, but sometimes difficult because you have to individualize each case according to the understanding which you grasp from the first meeting with parents. Difference would be the culture.
Some parents may believe that withholding or withdrawing technological support is not acceptable in their cultural/religious practices. At times this caused trainees’ fear, as expressed by one trainee who stated,
I try to avoid the babies whose parents have very strong religious beliefs because I don't know how to properly talk to them.
Other trainees recognised the importance of religion in many families and confronted this head on—finding that including religion in the discussions was actually helpful not harmful. It was often a way of expressing respect for the family, and it had the potential to aid in forming a trusting relationship. One trainee stated,
Many people think that if you involve God in this decision, then you might find it difficult… but if these parents have a strong belief in God or whatever that is then I think it is important to appreciate and to understand it.
Managing personal internal conflict
The last theme identified involved trainees managing their own internal conflict. Many of the trainees came from religious backgrounds in which WLST might be considered against their faith. Often the prevailing practice in their home countries reflected these same beliefs, and thus, they did not have to address these issues at home. In Toronto, each trainee dealt with personal internal conflict individually, all understanding that WLST and DNR were an important and necessary part of neonatology. Some trainees learned to separate their personal beliefs when making a decision with parents.
It is something I have to deal with. I've learned to actually withdraw my own personal religion from whatever decision that is made. I've had to.
Others decided that the rules of their faith cannot be considered when dealing with EOL situations.
I put it in the back burner. I say: ‘This is the way I am going to deal with it and hopefully I'll be forgiven in whatever decision it will have to be.’
Implications for fellowship training in neonatology
Most trainees in this study believed it is very important to receive formal training in EOL care. Most thought that didactic sessions or simulated case scenarios would be useful teaching methods. One trainee stated,
There should be more training, more mock cases, more sessions on how to manage end-of-life, which is not easy and we encounter every single day.
Nearly, all trainees had a sense of security and confidence working within a multidisciplinary care team, within a supportive environment for these types of discussions and the availability of palliative care coordinator. Although the palliative care team works within the department of paediatrics, they are not always involved in the care of infants and families at EOL in NICU, and trainees do not rotate through palliative care specifically as part of their training. Thus, the exposure is based on the patients who they see, and thus, their experience is varied across NICUs.
Finally, trainees in neonatology expressed the wish to have standardised guidelines/protocols for EOL care across NICUs, but they recognised that the specifics of each case demand an individualised unique process.
Discussion
Physician trainees’ narratives illustrate that the challenges they experienced in EOL care were mostly experienced during their initial stages of training. Overall, trainees reported that in this early stage they lacked a clear understanding of EOL issues and no matter where they came from they had to experience this phenomenon for themselves, grapple with the issues which it raised for them and then align the process with their personal views.
Previous studies have shown that it is common for healthcare professionals, particularly trainees, to indicate limited comfort with discussions surrounding EOL care.2 ,15 ,16 Graduating neonatology trainees are highly trained in the technical skills necessary to care for critically ill and dying neonates, but are inadequately trained in the communication skills that families identify as critically important when facing EOL decisions.17 In this study, all trainees were at different stages of learning the EOL care process when interviewed. Those at the end of their fellowship training stated that there was no way for them to prepare, that it was the process itself which taught them. However, the finding of this study suggests that EOL issues are important enough that training in cross-cultural EOL practice should be systematically taught.
In this study, physician trainees reported a need for ethical guidelines in caring for critically ill newborns from whom technological support may need to be withheld or withdrawn. Neonatal EOL palliative care protocols have been created and reported in the literature,18 but these are not specifically taught in this training programme. Instead, an individualised, contextual, case-specific approach is used in which principles are enunciated in the introduction to the fellowship programme and are then reinforced throughout the programme.19 The individual context of applying EOL care in a multicultural setting requires that each case, in each family, be explored individually.
Decisions regarding life-sustaining interventions including artificial nutrition and hydration are evaluated in the individual context of patients’ ongoing goals of care. In Toronto NICUs, the experience of the practice of withdrawal of artificial nutrition and hydration has been studied and parental perspectives on the process have been described.20 Although some trainees in the present study may hold personal or professional reservations, withholding or withdrawing artificial nutrition and hydration is legally and ethically permissible in well-defined circumstances, when the perceived benefits of artificial nutrition and hydration are outweighed by significant burdens, such as when it will only prolong survival without supporting quality of life, or when it is initiated as a bridge to improvement but the expectation cannot be fulfilled.21 ,22 Therefore, trainees in neonatology would benefit from a curriculum that addresses the medical, social, ethical and legal issues involved in foregoing artificial nutrition and hydration as well as provides guidance regarding the conditions under which medically provided fluids and nutrition can be withheld or withdrawn from infants who lack decision-making capacity.
When looking at who experienced the least distress, it tended to be those trainees who were able to separate their personal views from the situation and focus on the neonate and the families’ wishes. This finding suggests that physicians are encouraged not to allow their religious views to impair or indeed influence unduly the care that they deliver to patients given that the primary focus in EOL care should be the ‘Best Interests’ of the infant.
There are many clinical situations in which the infant's best interests may be unclear due to uncertainty about their predictable developmental outcome. In acute situations and pending clarification of the circumstances, the presumption should normally be in favour of life-saving or life-sustaining treatment. When it is possible to defer or delay acute treatment, such a delay is encouraged as further information is gathered to clarify the issues.23
Racine and Shevell24 emphasise that the prognostic uncertainty of neurologically compromised newborns frequently assumes that an outcome is inevitable, but multiple intrinsic (individual resiliency, plasticity of response, personal motivation) and extrinsic factors (timing, availability and access to rehabilitation services, socioeconomic factors and social supports) exist that may modulate outcome. Uncertainty and variability is intrinsic to the process of prognostication, rendering best interests assessments inherently complex.
When the predicted quality of life of a critically ill newborn infant is poor, trainees with more training were more confident they could inform families about the option of withholding resuscitation efforts. This may reflect the fact that individuals with more training have increased awareness of what they must do, with the focus being on providing comfort for the infant and relieving suffering. Today, ‘DNR’ is a traditional terminology that may indicate no resuscitative efforts in the event of a cardiac arrest or may more commonly be incorporated into a broader plan to limit active treatment. ‘DNR’ can give the misimpression to families that the attempt at resuscitation is likely to succeed. The American Heart Association in 2005 moved from ‘DNR’ to ‘do not attempt resuscitation (DNAR)’. Although it is less familiar than ‘DNR’, ‘DNAR’ reduces the implication that resuscitation is likely and creates a better emotional environment to explain what the order means. When a decision to forgo CPR is made, trainees found it easier to follow when the plan clearly stated the details related to limited attempts in resuscitative efforts. Perhaps a change of terminology of EOL-care orders, such as ‘AND’ which stands for ‘allow natural death’,25 would make the wording more descriptive and less threatening and would highlight the goal to provide comfort and pain management more so than ‘DNR’. However, ‘AND’ can be confused with the conjunction ‘and’ in addition to the need to clarify in the orders what is not wanted (CPR) and what is wanted (pain control, hydration, etc.).26
Limitations of this study include that it is limited to one university programme involving three hospitals, may not represent the feelings of other trainees in other programmes and included trainees with a heterogeneous level of experience in neonatology. However, choosing participants with varying levels of experience increased the possibility of shedding light on the research question from a variety of aspects.
In this study, we only surveyed senior trainees (trainees) and did not explore the feelings of more junior residents, faculty or other members of the healthcare team. If other team members feel the same, unit-based initiatives to target EOL care can be developed. Although cross-cultural communication might be specific to the Canadian environment, it is unavoidable that different cultures will meet and experience conflict around EOL discussions. Going forward, it may be helpful to survey other healthcare members in other centres to see whether they are struggling with the same issues. In addition, if an education plan were developed, it would be prudent to evaluate the plan to see whether it can mitigate the anxiety and distress that trainees experience.
Implications for practice and research
The data from this study shed light on the need for formal education in EOL care. Currently, trainees have formal teaching sessions on communication and breaking bad news, and they receive 6–8 h of bioethics teaching each year. This is in addition to common clinical training opportunities: family meetings which they are encouraged to attend. They are not expected to undertake the initial EOL discussion except where it may be appropriate in an acute unanticipated situation.
Trainees in this study are focused on what they must tell parents, rather than spending time listening to families so that parents’ values and beliefs can be understood. A constructive educational intervention can include training physicians to lead family meetings to discuss goals of care, talk with families about predictions of morbidity and mortality, present treatment options and palliative care options to families of critically ill infants, spend time listening to families and finally resolve conflicts of opinion between parents and healthcare providers, or among healthcare providers, regarding the management of critically ill infants. Clinical communication skills training in the form of role play, simulated patient scenarios, or supervision and feedback of fellow-led family meetings would be more effective than didactic sessions.
For this reason, it is necessary to develop and validate broadly applicable and accessible curricula to educate physician trainees in neonatology about providing EOL care in a culturally appropriate and sensitive manner.
Conclusions
When discussing EOL care with families, physician trainees experienced challenges mostly during the initial stages of their neonatology training. Since distress is experienced early, trainees may benefit from formal education on cross-cultural EOL practice. While valuing interprofessional support, trainees indicated interest in explicit EOL-care guidelines or simulated scenarios that could lessen some of the distress experienced.
Acknowledgments
All clinical fellows in neonatology who participated in this study.
References
Footnotes
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Contributors MFES: conceptualised and designed the study, carried out the initial analyses, drafted the initial manuscript, revised it and approved the final version as submitted. MC: conducted the audio-recorded interviews, reviewed and revised the manuscript and approved the final manuscript as submitted. MM: carried out the initial analyses, reviewed and revised the manuscript and approved the final manuscript as submitted. JH: conceptualised and designed the study, critically reviewed and revised the manuscript and approved the final manuscript as submitted.
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Competing interests None.
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Patient consent Obtained.
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Ethics approval Research Ethics Board at the Hospital for Sick Children.
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Provenance and peer review Not commissioned; externally peer reviewed.