Rigour.

Throughout the entire coding process a cooperative consensual coding approach [21] was applied, ensuring inter coder reliability by constant comparison between coders and according adjustments of the category system.

Outer framework.

On this level, we differentiated comments concerning the influence of society (n = 17) and institutions (n = 41) on dealing with desire to die in palliative care.

Society includes all comments on juridical aspects of palliative care, cultural conventions and societal attitudes towards death, dying and end of life care (specifically on ‘assisted suicide’), norms and ethical values. Comments highlight the relevance of desire to die but also reflect the insufficient definitions of and distinction between ‘desire to die’, ‘assisted suicide’ and ‘euthanasia’ in public discourse. This may lead to patients and their relatives (as well as health professionals) tabooing the topic:

”Having in mind that people who come to us might not have any earlier experiences with end of life, death and dying; thus also the vocabulary might be lacking and the entire topic might be perceived as taboo.”(Clinical psychologist, #0193)

In order to have a patient-centered conversation about desire to die, respondents stress the importance of knowing in which way to talk about it. Depending on patients’ socio-cultural background, norms and values, there may be different ideas of appropriateness and ethical convictions ranging from openness to taboo:

”It is a topic where not only personal perspectives play a role, but also family, belief, culture, milieu and one’s own history.”(Palliative care nurse, #356)

Comments on palliative care in general (not on the health-professional-patient-interaction in particular) such as the organization and framing of palliative care (e.g. setting) are grouped within the category institution. Institutional options can have an impact on the provision of a certain intervention such as medical or psychological therapies. Ensuring best practice not only depends on the general existence of specific treatment and care services, but also on their availability on short call:

“Intervention options must also provide the possibility of prompt implementation. Otherwise, people in distress cannot do anything with it and may even feel more desperate. Psychotherapies, for example, require a long waiting period.” (Nurse and ethics counselor, #367)

The importance of discussing possible modifications of therapeutic goals was stressed in order to best deal with desire to die and alleviate existential despair:

“When dealing with desire to die, we should primarily talk about options for treatment continuation and discontinuation. Else we drive people into suicide because we do not inform them about discontinuation [of treatment], [palliative] sedation etc.” (Physician, #0131)

Extended care system.

The extended care system has an impact on dealing with desire to die in the way relatives (n = 8 comments) and the team (n = 20 comments) are affected.

Relatives are involved in looking after patients and too are affected by patients’ distress. They also provide resources for the provision of optimal care by health professionals. Thus, relatives should be involved in conversations about desire to die:

“[Consider] offering opportunities to resume the conversation with […] family, friends, […]… depending on individual triggers for expressed desire to die.” (Hospice care coordinator, #0146)

All free texts that point towards the team as a resource for relief and reflection are grouped together. They suggest that interdisciplinary work enables the best possible support of those patients that wish to die:

“Sharing information with the multi-professional team […] and delegating tasks with assisting professions is hugely important.” (Elderly care trainer. #354)

However, discussing a patient’s desire to die with the team poses challenges as well, especially when no intervention seems immediately warranted:

“Withstanding ambivalences is of particular importance. Palliative care teams, too, seek to reason everything out, but that is not always possible in these challenging situations.” (Physician, #0141)

Uncertainties or dissent can arise among team members about how to deal with a particular patient’s desire to die. Ethical advice was pointed out as helpful to find approaches that are morally sound for all involved:

“An ethical case conference might be convoked if the health professional caring for a patient with desire to die (or their team) perceive the need to do so; e.g., when a patient’s desire to die overwhelms some team members and they wish to have collegial exchange.” (Neurologist, #0186)

Health-professional-patient-relationship.

The largest number of comments (n = 244) related directly to the health-professional-patient-relationship. It subdivides into health professionals’ abilities in understanding others (n = 36), their attunement towards a patient’s individual needs (n = 55), the health professionals’ professional expertise (n = 120) and their self-assessment (n = 33).

Understanding others. The importance of acknowledging divergent experiences (e.g. wanting to live vs. having a desire to die) and conflicting values (e.g. the protection of the sanctity of life vs. respect for patients’ autonomy) was stressed:

“[Health professionals should] accept that oneself and one’s own needs may disappear for a while during somebody else’s dying process.” (Volunteer, #0118)

Individual needs. Our panelists voiced concerns that the individual needs of a patient can–especially in the desire to die context–neither be reduced to ‘business as usual’ approaches, nor can they be adequately subsumed in broad theories about desire to die:

“Most important for [the clinical approach] is to stress that each patient is to be understood within their individual biography and that this cannot be generalized to others.” (Palliative care ward manager, #373)

Professional expertise. The two subcategories good clinical practice (n = 85 comments) and conceptual reflections (n = 35 comments) have been discerned on this level.

Good clinical practice. This subcategory includes all comments about communicational skills, health professionals’ duties as caretakers, individual (in)securities and keeping up with state-of-the-art practices related to desire to die. Building and maintaining relationships with the patient and knowing which interventions are adequate were highlighted as important. Open-ended communication should be understood as an appropriate action in this context, often establishing the basis for patients to talk about their desire to die at some point:

“Problem solving is the foremost reason for initiating conversations in everyday clinical practice. […] However, communication that allows (and recommends) participants to talk with each other for the sake of communication–open-ended, free of specific goals and documentable results–is an option, too. […] Health professionals should understand that these are professional conversations as well.” (Hospice care coordinator, #0146)

Conceptual reflection. All comments on theoretical and practical knowledge regarding desire to die, suicidality, mourning and depression as well as the need for differential diagnostics are included in this subcategory. The most common themes were the complexity and changeability of desire to die. In addition, the ambivalence between the will to live and desire to die was referred to:

“Wish to hasten death should not overshadow the wish to live… not to give up; both desires can be found in the same person simultaneously.”(Palliative care researcher, #0136)

Besides symptom control, the focus in palliative care is on dealing openly and dignified with the patients’ beliefs, wishes and burdens. The health professional should not try to talk their patient out of their desire to die, but try to understand it as best as possible.

“A palliative focus should be less concentrated on the avoidance of suicide. On the one hand we should aim at identifying and alleviating pain while on the other hand accompanying patients in their suffering as dignified persons towards the end”. (Palliative care nurse, #382)

Health professionals’ self-assessment. In order to facilitate long-term relationships and open communication about existential issues, health professionals should also accept their own limits. Here, the relevance of reflecting one’s own (emotional) experiences, (ethical) values and self-care was emphasized.

“Everybody has different limits. Authentic companionship includes the freedom to draw a line if a situation overwhelms me.” (Companion for the dying, #0203)

Within the various aspects of the health professional-patient-relationship, tensions and ambivalences emerge (see Fig 3). Health professionals and their patients are two participants of the care relationship and any communication therein. Therefore, health professionals must be able to alternate between focusing on their own viewpoints during self-assessment while also being able to take the patient’s perspective. Confronted with a patients’ desire to die, health professionals are also in charge of arranging the proper balance between their professional expertise regarding the phenomenon in general and the attunement to individual needs, which may differ from case to case.

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Fig 3. Tensions and ambivalences in the health-professional -patient-relationship as related to desire to die conversations.

https://doi.org/10.1371/journal.pone.0257382.g003

Evaluative category on “Proactively addressing desire to die”.

Among the 244 comments on the health professional-patient-relationship, 49 free texts expressed varying degrees of agreement with the recommendation that health professionals should proactively address desire to die with patients in palliative care (see Fig 4). There were no significant differences in opinion between subgroups (such as different professions) of the source sample [17]. The socio-demographic data of this sub-group largely mirrors the distributions of the overall sample (see Table 2): female and male participants are distributed roughly with a two to one ratio (71.4% female, 28.6% male), residence states are Germany (81.6%) and other countries (19.4%) and the mean age is M = 50.8 (SD = 8.6). The distribution of expertise among participants is, again, the same: the panelists are multi-professional practitioners, e.g. reporting 61.2% ‘nursing’ and 12.2% ‘research and science’ among other options on the multiple response format. We therefore conclude that no systematic selection took place via the option to comment on ‘proactively addressing desire to die’.

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Fig 4. Evaluative category related to ‘proactively addressing desire to die’.

https://doi.org/10.1371/journal.pone.0257382.g004

The group of commentators agreeing that health professionals should proactively address desire to die with patients (n = 17 participants) believe that this is part of the assignments of palliative care and they do not think that a proactive approach poses an iatrogenic risk (i.e. has detrimental suggestive influences).

The ambivalent commentators (n = 15 participants) rate speaking about desire to die as important, but wish that it only takes place when there are indicators or when an adequate situation arises. They fear that a proactive approach may overstep boundaries or manifest latent desire to die in patients.

The disagreement group (n = 17 participants) oppose proactively addressing desire to die because they believe that patients will talk about their desire to die on their own should they want to do so. Some believe in a suggestive influence of a proactive approach on patients to develop a desire to die. Others believe that health professionals are not skilled enough in conversation techniques to be able to address the sensitive issue adequately.

Effects of age, expertise and gender.

No effects of age or expertise were found across both, thematic and evaluative categories. For all evaluative and most thematic categories, no effects of gender were found either. That is to say, that the distribution between the genders of the panelists that stated the comments included in a given category mirror the gender distribution of the overall sample (see Table 2), i.e. they have or are close to a two to one ratio of female vs male gender. However, three codes deviated notably from this general descriptive trend: 18.4% more women commented on the importance of ‘individual needs’, 18.6% more women commented on the role of ‘relatives’ and 16.0% more men commented on the influence of ‘society’.

Gender effects.

In general, no effects of age or profession were found in the panelists’ statements. The identified gender effects were sparse and may be interpreted with caution: more women than men commented on the importance of specific patient needs as well as the inclusion of patient relatives–a perspective focused on social interaction. In contrast, more men than women took an abstract perspective and considered the impact of the surrounding frameworks. One possible explanation might be effects of gender stereotypes regarding agency and communion: empirically, women tend to display more communal traits whereas men tend to display more agentic traits [39]. These manifest in assumptions about how women and men experience and affect the world, which become part of one’s gender identity by socialization processes. Gendered professional styles such as these, including socially focused communication styles that are more often found in women, are not written into stone but are in fact prone the change (for example by communication trainings) [40].

The self and the others: Health-professional-self-care and sharing patient realities.

Patient-centered care, which is respectful of and responsive to individual patient preferences, needs and values, is considered to be an end in itself, not merely a means to achieve other health outcomes. That in mind, communication should be tailored to patients’ needs to permit meaningful deliberation [50, 51]. In relationships with others, we get a chance to share their realities and hence understand them better. The experience of shared reality is a fundamental human need [52] satisfying both the desire to understand and the wish to connect. Shared reality can be established via communication [53]. In the desire to die context, it can provide patients with an access to the health professionals’ expertise, helping them to understand something about death and dying such as a more thorough insight of their expected disease trajectory. Respectively, health professionals can try to take patients’ perspectives in order to address relational needs. It is important to stress that showing understanding for a patient’s desire to die does not equal agreement to hasten death. However, holding their desire to die secret might make patients feel less connected to others and may cause negative health and well-being [54, 55]. Being distant towards others, dissatisfaction with social life and a perceived lack of participation are described as predictive social variables of the wish to hasten death in older adults [56].

Desire to die and will to live.

Our panelists point out that knowing about the variety and changeability of desire to die and the will to live is also key in providing optimal care. In one of our earlier studies, we have explored this relationship in the context of palliative care [57]. Seemingly paradoxical alternations such as expressing a desire to die while at the same time requesting curative therapies [57, 58] are challenging to health professionals. They can be approached with a nuanced conceptual understanding of desire to die: Living well as long as possible even in the face of suffering and tolerating the possibility of death even while holding onto life go hand in hand [59]. When assessing a patient’s current condition, the possible changeability of desire to die over time has also to be taken into account [60]. Hence, related conversations should be understood as a dynamic, continuous process without a compelling need for immediate intervention. The German palliative care guideline also suggests that in case of persistent desire to die, health professionals should empathically accompany their patients both in and out of conversations thereabout [10].

Expressed concerns and potential benefits relating to (proactively) addressing desire to die.

Our panelists described tensions between their general knowledge on palliative care and standardized communication guidelines on the one hand and the patient’s individuality on the other hand. Therefore, the clinical approach for (proactively) addressing desire to die in palliative care promotes a patient-centered approach and allows for a great degree of freedom in application due to its semi-standardized structure [17].

The basic intervention recommended first, however dire the patient’s situation may be, is to engage them communicatively [10]. This is based on the assumption that an open discussion on (potential) desire to die in a respectful atmosphere can take the pressure off, illuminate possible backgrounds and open up new perspectives. As such, the recommendation on proactively addressing desire to die included in the semi-structures approach reached an expert consensus agreement of over 80% within the data that the secondary analysis reported here is based on [17]. The secondary analysis showed that there nonetheless exists a particular ambivalence concerning proactively addressing desire to die. While for some patients it is assumed to be relieving and helpful to detect potential for improvement in palliative care, there is also the fear of upsetting others or breaking a taboo. These kinds of arguments against proactively addressing desire to die most often stem from a concern about patients’ welfare and a wish to protect them [37]. Some health professionals worry that patients might interpret questions about possible desire to die as abandonment and that their life may not be considered worth living anymore [61]. Furthermore, not all patients might want to talk about desire to die, their prognosis or impending death. This could be interpreted as denial, even if it may be adequately related to their biographical or cultural background [62]. Although little research exists on the iatrogenic risk of desire to die assessment specifically, meta-analyses and reviews that can cautiously be used as indirect evidence confirm that asking about suicide neither causes nor increases suicidal ideation, behavior and psychological distress [4] and that therefore assessing desire to die probably causes no harm. Importantly, robust effects indicate that asking about suicidality can actually decrease suicidal ideation [4, 63]. Even if psychological distress increases temporarily post-assessment, affected participants still describe those conversations as acceptable and even meaningful [4]. These findings include short-term and long-term post-assessment evaluation and apply to the general public as well as to some vulnerable, high-risk populations [63]. In addition, a recent study found that cancer patients did not experience an ad hoc semi-structured clinical interview for proactive assessment of a wish to hasten death as distressing [64]. They rather considered it important regardless of whether they were personally affected or not.

Beyond keeping up an ongoing conversation with the patient about their desire to die, most best practice recommendations point towards addressing background and functions of it [10]: A strong predictor of desire to die is pain [65], therefore rigorous pain assessment and alleviating symptom burden are mandatory. In general, reasons a person might express for their desire to die can give insight into their acute wishes, needs and fears. Therefore, a desire to die conversation can be a starting point to more fundamental changes in a persons’ care plan, e.g. by deciding for moving into hospice care or adjusting a personal advanced care plan [66, 67]. In this line, open communication about all treatment options, including the possibility of therapeutic palliative sedation, is also recommended as it might reduce fears concerning future unbearable suffering and help in regaining a sense of control. If a desire to die remains persistent, a depression screening is recommended and psychiatric counsel can be helpful [10]. If a patient has a persistent desire to die and asks for assisted suicide but the responsible health professional is not able, willing or eligible to act on this wish, they should nonetheless acknowledge the existence of this wish [5]. Should a health professional decide that they can no longer provide care for their patient who desires to die, they should have a network of referral to whom they can transfer their patient [37].