Between the patient and the next of kin in end-of-life care: A critical study based on feminist theory

Abstract

Background:

For the experience of end-of-life care to be ‘good’ many ethical challenges in various relationships have to be resolved. In this article, we focus on challenges in the nurse–next of kin relationship. Little is known about difficulties in this relationship, when the next of kin are seen as separate from the patient.

Research problem:

From the perspective of nurses: What are the ethical challenges in relation to next of kin in end-of-life care?

Research design:

A critical qualitative approach was used, based on four focus group interviews.

Participants:

A total of 22 registered nurses enrolled on an Oncology nursing specialisation programme with experience from end-of-life care from various practice areas participated.

Ethical considerations:

The study was approved by the Norwegian Social Science Data Service, Bergen, Norway, project number 41109, and signed informed consent obtained from the participants before the focus groups began.

Findings and discussion:

Two descriptive themes emerged from the inductive analysis: ‘A feeling of mistrust, control and rejection’ and ‘Being between hope and denial of next of kin and the desire of the patient to die when the time is up’. Deductive reinterpretation of data (in the light of moral distress from a Feminist ethics perspective) has made visible the constraints that certain relations with next of kin in end-of-life care lay upon the nurses’ moral identity, the relationship and their responsibility. We discuss how these constraints have political and societal dimensions, as well as personal and relational ones.

Conclusion:

There is complex moral distress related to the nurse–next of kin relationship which calls for ethical reflections regarding these relationships within end-of-life care.

Keywords

End-of-life care ethical dilemmas moral distress nurse nurse–next of kin relationship

Introduction

The last days or weeks of life represent a significant time and often huge challenges for the dying person and his or her next of kin. Nurses working in end-of-life care are supposed to meet the needs and wishes of patients and their next of kin at this vulnerable time in life. In a case study, Harstade and Andershed¹ explored the experience of a daughter losing her mother. In-depth interviews revealed a ‘good’ story, with the following interpretation of the main theme: ‘There wasn’t much we could have done differently. It was as good as it could be’. A conclusion such as this must be the ideal for everyone involved in end-of-life care. So what characterised the experience? This was a story about professionals who carefully listened to the patient, and a daughter who felt the professionals acted in her mother’s best interests and were there at their side when they needed help with different care actions. The daughter also felt they saw both her and her mother during her mother’s dying and after her death. Both mother and daughter were aware of its inevitability. The daughter respected and accepted her mother’s wishes and did not try to persuade her to do anything to the contrary. She felt her mother had her own plan, and they had always been open with one another about death and dying.

This positive experience of end-of-life care came from the quality of the relationship, the self-understanding and strength of the patient and of everyone involved, and from the flexibility of the environment in which the care was embedded. This story highlights that for a situation to be experienced as ‘good’, everything must work out. At the same time, it makes us aware that many links in the chain can fail. In this article, we will focus on one of these links, namely, the nurse–next of kin link.

Next of kin are often referred to as ‘hidden patients’.² Being a next of kin to someone approaching death can be a complex and vulnerable situation. Next of kin may need support in caring for the patient, as well as mastering their own life situation and well-being during the end-of-life of the patient.³ However, being present when death occurs can also provide solace to next of kin.⁴ For the patient facing death, next of kin and friends can mean a lot.^4
–6 Next of kin and friends can play an important role in alleviating fear and existential anxieties and in providing reassurance that someone would be there who could be trusted to understand their needs.⁶

There is an important body of research contributing to the understanding of the situation and needs of patients and their next of kin in end of life^5,7,8 and also contributions regarding more focused interventions.^3,9 Such research shows that next of kin need support, comfort and safety. At the same time, many studies document that these needs are not always supported by nurses’ actions in end-of-life care.^10
–12 From the nurses’ perspective, lack of support for the next of kin is seen as a result of lack of competence and confidence in psychological and spiritual care and a lack of urgency in life-saving situations.^12,13 In line with McCourt et al.,¹³ Robinson et al.¹¹ found that these obstacles were worsened by barriers to effective communication that existed between nurses, patients and their relatives. Similarly, Gjerberg et al.¹⁴ found that ‘communication with next of kin is listed as one of the frequently reported ethical challenges in nursing homes and home care services’. They claim that conflicts with next of kin in end-of-life care are emotionally very demanding for care professionals and a source of moral distress. We wanted to follow this line of enquiry to better understand why it sometimes seems so difficult to support next of kin in end-of-life care. We decided to examine the challenges nurses experience through the concept of moral distress from a Feminist ethics perspective.

Moral distress from a Feminist ethics perspective

The concept of moral distress has origins in nursing ethics from the 1970s and 1980s. In his book Nursing Practice: The Ethical Issues (1984) the philosopher Andrew Jameton characterised moral distress as ‘a challenge that arises when one has an ethical or moral judgment about care that differs from that of others in charge’.¹⁵ The literature¹⁶ has provided a compelling account of the significant impact of moral distress on the personal and professional lives of nurses – including emotional exhaustion, de-personalisation and burn-out – which ultimately may be harmful to patients.¹⁷ However, while research on moral distress in nursing is timely and important, there are significant concerns about the conceptual fuzziness and operationalisation of moral distress.¹⁷ Peter and Liaschenko¹⁸ suggest Feminist ethics as one way of theorising moral distress. According to Peter,¹⁹ Feminist ethics has the potential to provide a perspective on which to structure ethical knowledge in nursing. It retains caring as a central moral concern: ‘an emphasis is placed on everyday moral experience, not just situations of moral quandary; the significance of human connectedness is highlighted; and the need for theory to be accountable to moral experience is emphasized’. In accordance with Feminist ethics, Peter and Liaschenko¹⁸ argue that moral distress is the response to constraints experienced by nurses on their moral identities, responsibilities and relationships. In this study, we applied this theoretical framework for a deductive reinterpretation of data.

Participants and methods

The study has a qualitative and critical design based on four focus group interviews with experienced nurses (n = 22), aiming to develop insight into the nurses’ experience and views through group discussion. The research is critical while going beyond the data to draw out broader ethical and political implications. ‘Critical research is value-driven and does not simply describe data, instead, it reinterprets data in light of critical theory’.¹⁹ In our case, this critical theory is Feminist ethics.

The participants

A class of registered nurses attending an Oncology nursing specialisation programme (n = 25) at a Norwegian University was asked to participate in the study. A total of 22 students of the all-female class agreed to take part and signed the consent form. Our recruitment method provided a demographic range across the groups, with most participants falling within the 36–50 age bracket. All the participants had experience of nursing, the majority having between 6 and 15 years of professional experience. Encounters between the next of kin of dying persons and nurses exist across different health organisations, since patients die in their homes, in hospitals, nursing homes and in-patient hospice units. We did not want to restrict our exploration to a specific field, but instead listen to nurses from different fields of work and experience with next of kin in end-of-life care. The participants have a broad range of experiences from different practice areas, although municipal care (home care and nursing homes) are most represented. Many also have experience from specialised units (palliative and cancer care) or other hospital units.

Focus groups

Our aim was to promote discussion of everyday encounters and concerns, which is consistent with Feminist ethics.¹⁹ We suggested that the nurses might have ambivalent feelings about next of kin and wanted the participants to explore such ambivalences. Focus groups work best for topics people could talk about to each other in their everyday lives, but do not.²⁰ Focus groups reduce the power and control of the researcher,²¹ which is also consistent with Feminist ethics.

Four focus group interviews were conducted. Each group contained only five to six participants to increase the depth of discussion. We used no interview guide, only one single question to spark a conversation among the participants – this also aiming to increase depth as we had limited the duration of the discussions to 30 min. One advantage was that the participants were used to reflecting on things together and we did not need to give them time to introduce themselves. The initial question for all four focus groups was

It is said that it can be as challenging to relate to the next of kin as to the patient in end-of-life care. What is your opinion and experience of this? Can you discuss this matter?

We phrased the question this way in order to gain a closer understanding of why nurse–next of kin relationships fail. We wanted to avoid putting next of kin and patient in the same category, as often occurs in the literature.²²

In the role of moderator, the researchers must try to facilitate the conversation among participants, not impose questions and comments. It is nevertheless important to ensure that the subject in focus is discussed. In our context, being a moderator especially meant reminding the participants to talk about their own experience, opinions and feelings – not those of the patient or next of kin. Gjerberg et al.¹⁴ suggest that many hesitate to use the word ‘conflict’ in regard to next of kin so we used an open discussion approach to the theme. As moderators, our aim was to empathise with the participants’ narratives in order to bring out distinctive aspects of their own views and experience. Both researchers (E.R. and V.I.U.) acted as moderators and ran the focus groups together, also performing the analysis and writing the study.

Braun and Clarke²¹ claim that focus groups are not the best method for ‘experience questions’. Although we asked participants to share experience of encounters with next of kin in end-of-life care, we were not after long, detailed personal narratives. We did not try to follow-up individual views or experiences in depth. Instead the participants were encouraged to discuss and share experiences among themselves.

Ethical considerations

The study was approved by the Norwegian Social Science Data Service, Bergen, Norway, project number 41109. The researchers provided participants with a verbal description of the study and a written consent form. The participants gave their written consent to participate in the focus groups and were informed about their right to full confidentiality and right to withdraw from the study at any time.²³ Participant and third-party anonymity is preserved in the text. The international standard for authors²⁴ was followed.

Of specific ethical consideration was the issue that we as researchers also had a role as the participants’ teachers. We therefore emphasised that participation in the research was optional and that declining participation would not affect their studies.

Data analysis

Data were audio recorded and transcribed. The analysis required an inductive and a deductive phase.¹⁹ In the inductive, bottom-up analysis, we used a thematic approach²¹ to identify patterns across the nurses’ accounts. Following Braun and Clark’s²¹ principles for thematic analysis, we describe our inductive analytic process this way: first, both authors did a naive reading of the transcripts and independently made notes in the margin labelling the content. We looked for key passages of what was said. Second, we met and discussed our first impressions and which categories that emerged from our labels and overall impression. Third, we agreed upon preliminary categories and went on working independently on clustering the material under the categories, which led to renewing the categories, that is, merge some categories to one and split others with new labels. Fourth, we met again and repeated steps 2 and 3, that is, we agreed upon and refined the set of categories and ensured an intersubjective understanding. Fifth, all the material was clustered according to the final categories and through discussions we agreed upon which quotations we considered best to represent the category. The main themes which emerged from the inductive thematic analysis were as follows:

A feeling of mistrust, control and rejection;

Being between hope and denial of next of kin and the desire of the patient to die when the time is up.

Since moral distress emerged from the inductive analysis, we conducted a second deductive stage of analysis. We reinterpreted the material with Peter and Liaschenko’s¹⁸ suggestion in mind, namely, that moral distress is the response to constraints on nurses’ moral identities, relationships and responsibilities. Braun and Clark²¹ distinguish between data corpus and data set. Data corpus refers to all data collected for a particular research project, while data set refers to all the data from the corpus that is being used for a particular analysis. In the deductive reinterpretation, our data corpus consisted of the data set (the themes) from the inductive coding. This merged reinterpretation of data in light of Feminist ethics is presented in the ‘Results and discussion’ section. To ensure rigour, we made certain that the purpose of the research, the theoretical assumptions and the method of data analysis were congruent.

Results and discussion

In the focus groups, the participants were asked to emphasise the challenges in encounters with next of kin in end-of-life care. However, before probing these challenges, it is important to stress that participants clearly stated that next of kin were mainly a resource, both to the patient and to the health professional. For example, they said, ‘My experience from the hospital is that next of kin are very much aware of what is going on and they are actually mostly a help and rarely a strain’ and ‘Patients who have good next of kin around get a much better time (at the end) than those who have none’. The nurses were also aware how significant end-of-life situations were to next of kin. One nurse said, ‘This is what the next of kin will remember for the rest of their life – how everything was’.

However, against the backdrop of positive experiences, we present our deductive reinterpretation and discussion of data in light of moral distress from a Feminist ethics perspective.

Moral identity

The discussion among the nurses in the focus group revolved around feelings of being obstructed from giving holistic care to the dying patient because of protective next of kin. One nurse said,

The patient’s wife also wanted to take responsibility for the care and we should respect that wish to do so – it’s the last intimate thing she can give – but we also have to ask the question: are we able to give good nursing care? And is it a responsible thing to allow her to take control of it all? […] This couple were relative newlyweds, and had just met. And it became clear that the wife didn’t like others taking care of him. We were told not to pat his hand, and similar things that we usually do. We were not supposed to touch him.

Another nurse talked about a mother whose daughter had cancer and was dying: ‘We were not allowed to enter the room’, she said, and continued:

We weren’t even once allowed to ask the patient if she was in pain, and if she needed painkillers. We just got told: No, she doesn’t need anything now. She’s fine, doesn’t need her sheets to be changed – I’ll sort it out.

In such situations, the nurses felt they were not able to follow their values and professional ideals. They felt deprived of influence over care decisions and felt their expertise was devalued. Nurses appear to be in a tension between, on one hand, strong internal normative ideals of caring, and, on the other hand, external demands from, in this case, next of kin, to comply and submit. We interpret this tension as a threat to the nurses’ moral identity. In line with this, Huffman and Rittenmeyer²⁵ report that nurses experience moral distress when they cannot enact their core values, especially the value of holistic care.

For the nurses to feel confident in their identity as moral agents, it is important that those they are in relation with see them as ‘doing good’.²⁶ Mullin²⁷ claims that it is appropriate for adult care recipients to feel and express gratitude to the care providers. However, she underlines that a condition for this gratitude is to have received care that ‘meets needs they would find it difficult or impossible to meet on their own’.²⁷ The next of kin referred to by nurses in our study did not express gratitude. It is conceivable that they did not consider the nurse’s competence of care as any better or different from what they themselves, as next of kin, could provide. We might explain the problem described by the nurses in our study as perceived lack of recognition and appreciation from next of kin for their benevolent efforts both towards the next of kin and the patients. We interpret this as a threat to the nurses’ moral identity.

The hierarchy of nurses and physicians is often described in Feminist ethics of care, with the power distribution in these relationships being fairly obvious. However, in regard to next of kin and nurses in end of life, it is strange to talk about a power relation, and especially a power relation where the next of kin have the power. Nevertheless, as we have shown, next of kin may possess power in relation to the nurse.

The identity of ‘nurse’ is a social construct.¹⁸ Henderson²⁸ claims that nursing, as a practice, is indivisible from being a woman. Women in general are expected to be nurturing, emotionally expressive, communal and concerned about others.²⁹ Some will argue that this expectation makes nurses’ identification with their nursing role easier because the role is close to their gender identity.³⁰ Ramvi and Davies³¹ argue against the latter and suggest that female nurses instead have a constrained portrait of themselves, leaving little opportunity and permission to explore the difficult emotional and situational complexities that they experience in their professional practice. A case study of a nurse’s self-understanding³² underscores this argument. The nurse’s feeling of being ‘only a nurse’, originated from her experience of a low status, as well as belittling the competence needed to deliver quality care in professional relationships. It suggests that while there may well be biographical reasons for such low self-esteem and self-denigration, the nurse experienced that society at large were also actively disparaging about nurses’ competence, and in particular about their requisite relational competence. This is also what the nurses in our study described. In line with this, Liaschenko and Rodney³³ claim that nursing knowledge is invisible. One suggestion is that it is this societal view of nurses’ competence that may give next of kin power in relating to nurses in challenging relationships. Denigration from next of kin is possible while it is also part of the nurses’ self-understanding.

Relationships

Trust is a moral dimension of relationships³⁴ and is important in any nursing relationship. A deductive reinterpretation of the thematic analyses is that it is precisely this trust which is challenged in the nurse–next of kin relationship when the relationship goes wrong. As mentioned above, it is evident from our study that the next of kin can in some ways claim they are able to take care of their loved ones as well as the nurse can. It is difficult for nurses to re-examine the care given by next of kin. The nurses may experience a fundamental violation of trust and constraints on their moral agency. For example, one nurse said,

Every time we suggested something, the next of kin called someone and checked up on our information, and if we informed them about the process and what was happening to the patient, they (the next of kin) said, ‘Yes I’ve just googled it’ or ‘I’ve just checked it’ and you felt all the time they were checking up on everything you did.

To establish relationships is to encounter vulnerability, both within oneself and within others, which calls forth every aspect of the professional’s self.³² A dying person’s next of kin are in a very vulnerable position with their grief and sorrow and are often in need of care themselves.³⁵ Our participants told us about next of kin who were tired, angry and frustrated, something they said they could understand. One participant nevertheless acknowledged: ‘When we’re the ones they’ve been meting out their frustration on over time, it becomes burdensome for us too’. Another said, ‘It was worse before; the first time I was yelled at, I started to cry and left the room, but now I understand it more, because I’ve seen it a lot’. As mentioned earlier, the next of kin may be described as ‘the hidden patient’. In this expression, we also recognise the disguised role of next of kin. There are arguments for next of kin to be both one who needs care and one that gives care, thus making this type of moral distress particularly difficult. It is emotionally difficult to contain the anger and frustration expressed by next of kin and at the same time obey orders from them as if they were colleagues.

Another threat to these relationships is the fact that trust in itself involves vulnerability, and there must be good justifications for entering into a trust relationship.³⁴ Next of kin may feel so vulnerable when confronted with a loved one soon approaching death that they have to protect themselves from more vulnerability. For some, entering into a trusting relationship with a nurse does not feel so threatening, and they can easily surrender to a vulnerable state. For others, this vulnerability is so unbearable that they fight to retain what is left of their strength and autonomy. They protect their identity by trying to control the situation and reject the nurses.

On the other hand, we can picture the nurse – also vulnerable in the situation of trusting the next of kin. What if the nurse decides to hand over some of the care responsibility to the next of kin – can she trust this person not to exploit her trust and accuse her afterwards of not having provided professional care? Can the nurse trust that the next of kin acknowledge her competence and ask for help when they need it? Can she trust they are acting in the patient’s best interest? And last but not least, does the nurse have permission to trust the next of kin in this situation when there is a third party – the patient – involved? Mutual mistrust and vulnerability is a constraint on the nurse–next of kin relationship.

Responsibility

The inductive thematic analyses revealed a challenge emerging when the next of kin still hope to prolong the life of the patient, while the latter desires to die in peace, as exemplified here:

I often think that the patients are ready to die before the next of kin are ready for it. The patients are more aware of the situation then the next of kin. It can be a little tricky to discuss this with the person in question. They’re not ready to terminate treatment, with liquids and things like that.

Another participant said, ‘…and the person in question googles suggestions for alternative treatments. It’s not often such suggestions come from the patients themselves – it’s the next of kin who are eager to start alternative treatments’.

The nurses reflected upon many reasons why next of kin might find it more difficult to acknowledge the approaching death than the patient. They said that patients can ‘feel it’s time’ but simultaneously want to protect their next of kin. The nurses also commented that ‘physicians think it’s difficult to talk to next of kin and postpone the conversation’. Another continued, ‘And even if the physician informs the next of kin, it can be difficult for them to accept it. Next of kin often have to receive the same information several times before they really understand’.

The ethical guidelines of the Norwegian Nurses’ Organisation (NNO) are based on the principles in the International Council of Nurses’ (ICN) Code of Ethics and on basic human rights as they are expressed in the UN’s Declaration of Human Rights.³⁶ The guidelines describe nurses’ professional ethics and the obligations that pertain to good nursing practice. Here, a respectful relationship to next of kin is highlighted. It also says, ‘If conflicts of interest arise between the next of kin and the patient, consideration for the patient shall be given priority’. Despite this, nurses and physicians in end-of-life care emphasise procedures directed to the patient’s next of kin, on re-orientation of treatments and approaches to further care.³⁷ One nurse said,

It was a young patient, and the mother – the mother wanted to do something good for her kid, didn’t she? Well, I think, in the end, we just had to give in and administer nourishment. I think it ended up like that because it was so difficult. We had to do it even though it went against everything.

Some relatives wanted to control, dominate and direct care decisions, often in opposition to the patient’s or nurse’s wish.^14,38 Our inductive analysis revealed how difficult this can be in real life, as illustrated by the following dialogue:

Yes, I had an old lady who had two daughters, and it was approaching the end for the mother and…but the daughters kind of didn’t want to accept that, that this was the case – they constantly wanted to try getting her to get up and walk, to eat, and they were very concerned she got everything she needed and they were on to us a lot; we said, well, this is how it is and tried to explain, but they kind of didn’t want to accept that […], the mother didn’t want to; she had in one way accepted that this was it, but these two daughters hadn’t, so everything was so wrong, I mean it wasn’t good for her, hmm.

Yes, we all have experience of that, and I think it’s a case of crossed wires – how the family overrides their own family member and stuff, that they don’t respect their wishes and needs.

At the same time, if the patient has come to terms with it and says, now I want to be left in peace, and the daughter says no, we have to do more…that I think is difficult, because if it had been my mother…

Oh and Gastmans¹⁶ found that nurses experienced moral distress (not limited to end-of-life care) more frequently when they felt compelled to act in ways they perceived were not in the patient’s best interests. As nurses, they are in close proximity to the patients and feel the latter suffer unnecessarily. This can heighten moral distress.³⁹

Another interpretation of the nurses’ difficulties in showing responsibility, first and foremost to the dying patient, may be that they understand and identify with the grief and despair of the next of kin and unconsciously side with the next of kin against the patient. The nurses describe this situation as being ‘forced’ by manipulative and controlling next of kin to follow their care decisions. However, another interpretation is that nurses also find it difficult to go against the next of kin because they are more likely to identify with the latter than with the dying patient. According to Yalom,⁴⁰ every human being carries an unconscious fear of death, which threatens to break through the psychic defence in encounters with death. Holding on to life as an escape from fear of death could be an interpretation of why healthcare staff may identify with the next of kin, who will continue living.

However, regardless of the various interpretations, being between respect and care for both the patient and the next of kin is a constraint on nurses’ responsibilities.

Conclusion

The purpose of our study was to explore the ethical challenges nurses experienced in encounters with next of kin in end-of-life care. We have discussed our inductive findings in the light of moral distress from a Feminist ethics perspective. First, we focused on how nurses’ moral identity may be threatened by the feeling that their care expertise is not valued by next of kin and also by not being recognised as ‘doing good’. Second, we discussed how trust, as a moral dimension of the relationship, is jeopardised in response to mutual vulnerability. The final discussion revolved around nurses’ responsibility. Nurses’ responsibility is affected by the tension between the next of kin’s hope and the patient’s desire to die in peace. Nurses’ responsibility can also be affected by their personal defence against fear of death.

As mentioned in the introduction, studies suggest that a lack of competence and confidence in psychological and spiritual care among others is a reason why it is sometimes difficult for nurses to support next of kin in end-of-life care. Our critical discussion of the inductive findings adds to this insight. Our study has revealed that it is important to analyse the nurse’s relationship to next of kin separately from the relationship to the patient in end-of-life care due to the moral distress these relationships can provoke in nursing practice. Our perspective has enabled us to reveal how personal, relational and societal constraints are mixed up in the ethical challenges the nurses experienced in these relationships. Such challenges are complex and there is no single solution. Both the societal devaluation of nurses’ competence and their personal defence against fear of death reinforce each other and complicate the challenges of the nurse–next of kin relationship. However, the devaluation of nurses’ competence must be seen as oppression and is regarded by Feminist ethics as fundamentally wrong, both morally and politically. In this regard, the moral identity of nurses must be sustained. Ethical reflections are essential to acknowledge what is at play between the nurse and next of kin. In view of this, we appeal to leaders in the healthcare sector to take these findings to heart. Ethical reflections contribute to nurses’ moral agency, and consequently, their ethical practice. Awareness of nurses’ ‘use of self’ in their practice is essential. We would highlight the importance of exploring vulnerability in relationships, based on the assumption that nurses’ vulnerability is both personally and socially constituted. It is also essential to reflect on what happens to ethical knowledge when negative emotions and unconscious motivation are at play. Moreover, the professional environment must recognise and accommodate the expression of fear of death.

To summarise, based on our critical approach, we found that personal, relational and societal constraints became mixed up in the ethical challenges that nurses experienced in their relationships with next of kin.

If we should attempt to suggest implications for nursing practice from this study, we would emphasise the significance of having a manager that may facilitate systematic supervision where ethical reflections and awareness of nurses’ ‘use of self’ in their practice is in focus. For educational purposes, we suggest that nursing students are encouraged to learn how to take a critical approach to experiental phenomena so that they may avoid turning to simplistic cause-effect understandings of complex relationships.

Limitations

Our study is not bound to any specific end-of-life care setting, but to a broader experience of end-of-life care from the view point of well-educated female nurses enrolled on a graduate oncology programme at one university. As a result, we are not able to comment on how specific care settings and cultures influence nurses’ encounters with next of kin, or if male nurses would have other experiences. The focus group discussions, lasting only 30 min each, is another limitation in the study. However, we attempted to counterbalance this in that the participants already were familiar with each other beforehand. There were only five to six participants in each group and there was only one single question to discuss, which in our experience enabled a more condensed session. As always in qualitative research, another limitation is that there may be bias in the choice we made as researchers in regard to which of the focus group participant narratives were the most valuable. Our own values and life experiences play a role in this respect. To mitigate this limitation, we engaged in an ongoing process of reflexivity as we examined our own assumptions that might influence the interpretation and the data and as we presented our findings to two different research groups. They reflected on our interpretations of the data and suggested other ways of understanding the participant narratives.

Another limitation lies in the fact that our study focused on constraints in the relationship to next of kin in end-of-life care, meaning that many other dimensions of this relationship were not explored.

Footnotes

Conflict of interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

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