Data amalgamation and analysis generated four broad themes and subthemes. Broadly these follow a clinical trajectory from an initial request to beyond bereavement care (Table 4). Novel themes, and those answering pragmatic questions about assisted dying implementation (3), are included here.
Main Theme: Assessment and Its Challenges
Frequency of Requests, Exploration and Negotiation, Personal Characteristics
Regardless of professional role, all participants had experienced expressions of interest, or talked to patients, about assisted deaths. Patient’s vocalisations were usually exploratory, but assessing seriousness was needed. No resentment was expressed, but this impacted on workloads particularly at the hospice (Site B) where “fifty percent” (P4) of admissions sought such dialogue. Open dialogue, end-of-life care experience and legal knowledge were considered essential as patients often lacked such knowledge. Some patients considered assisted dying “too easily” (P17) and seeking clarity of reasoning, the “question behind the question” (P4), was essential. Common fears expressed by patients related to care quality, poor symptom control and the dying process according to the participants.
Requests were often retracted after exploration and resolution of patients’ fears, but at the larger research site (Site A) enduring requests were reviewed in multidisciplinary meetings. If a team consensus could not be reached a request was more likely to be refused (P11). At the hospice (Site B) such meetings did not take place. As a consequence some nurses (P3) attended deaths about which they felt uncomfortable, having not being involved in the decision-making. The tenacity of patients was also highlighted with some going to extraordinary lengths to gain an assisted death, including transferring from non-permitting to permitting institutions and enduring assessments which lasted months. Participants felt educated and articulate patients were more likely to have requests granted (P8). Other personal characteristics such as the fear of burdening others and valuing autonomy were also highlighted. Modern lifestyles were also cited as a contributing factor:
“They have birth control and financial control and now they want death control.” (P2)
Requests made too late in the disease trajectory, and if family coercion was suspected, were refused. Notably, in chronic disease, some participants felt patients were grateful (P5, P11) for a request refusal. According to participants sometimes refused patients moved on to new and rewarding roles such as becoming a Grandparent (P5).
Support and Conscientious Objection
The majority of participants initially expressed support for assisted dying, but during interviews a more complex picture emerged. Several applied qualifications to their support. These included physicians exercising objection to specific patient groups such as those with dementia. Some professionals highlighted this inequality of access for dementia patients as unfair, but for some physicians it was a “step too far” (P11) and they declined involvement. Some participants approved of the patients’ right to discuss assisted dying, but doubted it was ever a good option (P17, P18). Assisted deaths were also more acceptable in somatic disease, particularly if symptoms were intractable, than in psychiatric illness (P9). Moreover, good medical care, careful assessment of requests and care in life termination, was a prerequisite for participation of some nurses (P7, P20). Without these elements they felt able to withdraw their support. Being vigilant of the potential for abuse was also reported.
Only one participant, working at the hospice, had a moral objection to assisted dying (P2). However, despite her stance she was required to assess requests before passing them on to a participating colleague. Seen as onerous, this challenged her emotionally:
“I can totally understand this patient wants euthanasia, but that does not mean that I want to do it” (P2).
Cited as a cause of frustration and stress, particularly when relatives did not understand she could not simply “kill the patient” (P2) it was also suggested assisted dying led to difficulties in retaining some hospice medical staff.
Palliative Care, Changing Minds and Boundaries
Unbearable suffering, a key legal criterion, is recognised as problematical to assess (27). To overcome this problem physicians’ focused on optimising palliative care to decide if suffering was remedial. An experienced physician (P11) explained:
“The first challenge is to optimise my palliative care for these patients...you ask yourself ‘did I do everything I could to make this suffering bearable.”
Professionals valued palliative care highly. Several had undertaken extra training and cited an increase of palliative care use over the time. However, the increase in the number of Dutch palliative care providers has followed, rather than preceded, assisted dying legislation (28). This frustrated some professionals especially those with a moral objection, but others (P9, P18) were more circumspect highlighting that even their best efforts did not always resolve suffering. Notability however, simple strategies to overcome disability, such as providing a wheelchair and more complex procedures, such as artificial feeding, delayed some assisted deaths particularly in patients with chronic disease. Referral to a pain specialist resulting in a nerve block was also cited as eradicating a request (P5).
Assessing psychological status at life’s end is problematical (29). If mental health issues are suspected, a psychiatric opinion is mandatory, but at the chronic disease care centre (Site A) patient review by a psychologist was standard practice. Unfortunately, this professional was not recruited so detailed knowledge of their role is lacking. Nurses however, highlighted their ongoing observation of patients’ mood, facilitated by the continuity of their care. Patients had ‘good and bad days’ (P14) influencing the consistency of their requests and, if some rehabilitation was possible, they became more positive.
Assessing and Supporting Families
Families were assessed by a social worker if one was available (Site A). Comprehensive knowledge of the role undertaken by social workers in assisted dying has been reported as lacking (30). However, in this study, the social worker was clear about the scope and boundaries of her role. After meeting the patient, she assessed the family’s ability to support, and cope with, the patient’s choice of death. Often, family members needed help to deal with conflicted emotions:
“They may have the feeling they are not important enough to stay alive for. They have to deal with it and it is difficult. They say, 'He needs help and I can't give him the help. I have failed'. Or 'I don't want to be selfish' [wishing life]. Those feelings come and go’.” (P9)
Attempts were also made to prepare children if old enough to understand a planned death. However, in the absence of a social worker (Site B), nurses took on some elements of this role, although some families prepared children themselves.
Other professionals developed close relationships with patients and their families. Although sometimes emotionally demanding, these were viewed as valuable learning experiences. A young nurse (P10) described a young couple’s reaction to the husband’s assisted death:
“It was beautiful to see how man and wife communicate with each other and it was unbelievable.”
Prior to the death the nurse organised activities including nice meals for the couple on the ward.
End of Life Clinics: Challenging Safe Assessment?
Only one participant (P4) had direct experience of the death of a nursing home resident performed by the End of Life Clinic (14), but several cited concerns. These related to the clinic’s staff’s lack of a long-term relationship with the patient and family as a physician (P11) explained:
“….euthanasia is something that is part of a treatment trajectory you go through together as a patient and the physician. It feels wrong if patients can go to a clinic getting their euthanasia as a sort of product, should not be like that.”
Participants suggested the clinic challenged legal boundaries, but none suggested it was acting unlawfully. Others highlighted the challenges of adequately assessing requests in busy hospital environments, such as outpatients, where ten minute consultations are the norm. A physician (P18) explained:
“…they say [the clinic] ‘we have at least four conversations one hour'. They say they know the patient better than the patient’s General Physician [GP]. If they work very carefully, take their time, they can come to a right decision, a reasonable judgement.”
Other participants suggested the clinic had a useful role in supporting inexperienced physicians in administering lethal drugs, an issue highlighted later.
Main Theme: Preparing Professionals
Eighteen years of Dutch assisted dying legislation was cited by some participants (P4) as adequately preparing professionals for their role, but not all agreed. Averij [pronounced A-ver-lay], meaning to ‘sustain heavy damage’, was also used by one nurse (P5) to describe the resilience professionals needed to care for such patients. Such resilience, it was suggested, arose from life and care experiences (P5):
“You can prepare for it, but the most of what you have to have is life experience 'averij’. I have seen in life what illness can do to people. You can be sick for long years and, now and then, when someone says 'No, it is enough'. It is enough.”
Understanding the legal boundaries of their role by accessing online learning and case study review was seen as helpful preparation, but assisted deaths were emotionally demanding particularly for less experienced professionals. The need to prepare clinical students on placements was also identified with concerns they need, but may not have access to, the same level of support as qualified staff.
Main theme: Assisting a Death
Final Requests, Managing the Death
The date and time of the death were negotiated with the patient and family. Allowing patients to attend to personal matters they often made final requests, some simple, others more elaborate. Simple requests included a final cigarette or favourite meal. The more elaborate included making keepsakes for families, filming videos, organising afternoon tea for friends, and aromatherapy, make up and favourite lingerie donned prior to death. Participation of professionals in such activities was viewed as rewarding and ‘special’ work (P9, P10, P13). Some professionals also gained an enhanced appreciation of the impact of illness on the patient (P5).
Careful management of the death, to protect staff, was needed. Additional personnel, sometimes experienced volunteers, were rostered to provide extra support. Nurses caring for the patient were allowed to go home after the death. Nurses aimed for “peace around the bed” (P6), but such deaths were hard to hide from other patients. Mindful of confidentiality professionals had to be prepared for questions. Deaths, in cases of family conflict, could result in harrowing scenes and careful negotiation of those present was recommended (P6, P17).
Administering Lethal Drugs
Specific Dutch drug protocols exist (31). Self-administration of lethal drugs is permitted, but because of well-published concerns about drug efficacy of oral or feeding tube administration (32), physicians overwhelmingly favoured intravenous delivery. Dutch physicians’ presence is required even if self-administered, but for some physicians it was an ethical as well as a legal, issue. Viewing the Death with Dignity Acts in the United States as “saying ‘OK that’s it, see to it yourself” (P11), providing patient support at death was seen as a medical responsibility.
Several physicians however, identified emotional challenges in administering lethal drugs. Some, after cannulation, requested help from a more experienced colleague. Relative youth, a lack of experience and a long-standing patient-physician relationship were cited as reasons for this problem. A seemingly confident physician (P18) explained:
“I'm thirty-two for the record. I can discuss with the patient, with the team and agree it is the best option, but to take away the life in a moment and inject the medication that is something else. I believe I'm not still ready for that.”
Swiftness of death after intravenous delivery surprised many participants occurring in ‘seconds’ or occasionally ‘minutes’. Moreover, a physician (P2) with an objection to such deaths suggested that repeated exposure may not lessen impacts:
“I had a colleague who was all for it [assisted dying] and she's 'I can't do it anymore' because even if you are in favour of it, it becomes a burden when you do it three or four times. It is stressful to kill somebody.”
Other professionals with experience of more than one assisted death did not suggest it became easier.
Its’ Never Normal
Assisted deaths were not viewed as normal with an impact differing from a natural death. After death procedures for physicians, reported later, may intensify such feelings. However, other practitioners also identified a ‘strange atmosphere’ when a planned death was due to take place. A hospice nurse (P20) reported:
“It is always a little bit strange that someone is going to die tomorrow at seven o’clock. It is very strange.”
Several staff discussed the value of discussing such deaths openly not only with each other, but also in a wider context with continued societal debate considered a ‘good thing’. Most participants, although broadly in favour, reported a heightened sense of loss when a patient died with assistance.
Main Theme: Bereavement Care and Beyond
Waiting for the All Clear
Unable to supply a death certificate, completing multiple forms and contacting the local Prosecutor’s Office was onerous for some physicians (P11, P21). Waiting for Review Committee judgements also led to a period of uncertainty. Since conducting the interviews a lighter touch approach by Review Committees to less contentious cases has reduced waiting times, but in complex cases it can run into months. One physician (P21) questioned the legality of Dutch assisted deaths (P21) with all subjected to a form of judicial review:
“… it doesn't feel OK when you do something to help a patient and then you are [potentially] prosecuted for murder until they say you won’t be prosecuted. It is a very strange feeling. It's OK they are very strict about it, but if the protocol is followed you have to make it legal or illegal, but not this strange loop they now use.”
Less experienced physicians suggested the reporting procedures afforded legal protection, but as noted earlier physicians can be prosecuted for wrong-doing.
Emotional Responses and Coping Strategies
Responses immediately after the death ranged from a sense of disbelief (P14), to “relief” for the patient (P3), or feeling “very heavy” (P14), a word often used by participants to describe sadness. Some felt personal satisfaction in helping the patient achieve their aim, but for others, cases had a longer-term effect. Notably, for some physicians (P11) this influenced their ability to consider new requests raising access issues:
“…it has a lot of impact. For me it takes a year before I get over it and think 'Ok, now I'm ready for a new trajectory.” (P11).
Remembered for years in some cases, memories were triggered by unexpected events, although recollections were not always a ‘burden’ as a physician (P13) explained:
“Still now, when I enter his room I still think of it. You will always remember it, but it’s not burdensome”.
Coping strategies cited included case discussion with colleagues, talking to partners and the distraction of conferences. More formally, a psychologist was proactive (Site A) visiting the ward to talk to staff. Debriefing meetings were also held and, despite being emotional, these were highly valued and considered invaluable for less experienced colleagues. Formal debriefing was not mentioned at the hospice (Site B), but “talking, talking, talking” (P3) was a popular strategy amongst the nurses to aid closure. Visiting physicians at the hospice had tea with the ward manager which she viewed as an importance supportive measure.