Abstract
Introduction
This is the 14th of a series of cases for the Case Studies section of this journal. This case took place in a Dutch general district hospital and was discussed at their Clinical Ethics Committee (CEC). The discussion was in response to a letter written to the hospital's Board of Directors from the family of a woman who we will call Susan. Susan had been diagnosed with Parkinson's disease some years previously and had recently died from disseminated breast cancer. Her family (husband and children) deliberately did not write a formal letter of complaint; instead they asked a series of pertinent questions and hoped their letter would prompt a review of hospital procedures. Susan's general practitioner (GP) had suggested her husband write a letter to the Board, and the GP himself also sent one expressing similar sentiments. The Board therefore asked the CEC to give its response and advice, based on the content of these two letters. The GP took part in the CEC meeting. In this Case Study, we discuss the case, the GP letter and the subsequent CEC discussions as well as the response from the CEC to the Board of Directors.
Since there was more than one specific moral issue or moral question in this case which the CEC wanted to cover in their response to the Board, the CEC decided not to use a strict ‘conversation method’ for moral case deliberation. As discussed in a previous paper in this series, 1 this method thoroughly addresses one core question. The CEC therefore used a less structured general discussion, starting with an inventory of various moral issues as perceived by the members of the CEC and the GP. To safeguard confidentiality of both the family and the hospital, the names of the members of the CEC are not listed. Bert Molewijk facilitated the case discussion and obtained consent for publication from the CEC, the GP and Susan's family.
The CEC, founded in 2007, covers two general hospitals in the east of the Netherlands with 925 beds and 2326 full-time employees. Its membership comprises a chair (geriatrician and palliative care consultant), a divisional manager, two medical specialists (ENT and paediatrician), two nurses, the head of the quality management team, a hospital chaplain and an external clinical ethicist. The CEC works closely with a ‘CEC Support Group’ comprising a senior member of the Patient Communication Service, three nurses and one social worker. This group organizes ethics teaching and support on the wards (on request), as well as the CEC's website and public relations. The CEC provides a consultation service in a variety of formats, for example: CEC discussions with CEC members only; CEC meetings with some of the stakeholders in a case; small team meetings on the ward with some CEC members; moral case deliberation with ward staff only and moral case deliberation with both CEC members and hospital staff. It also provides some ad hoc ethics education for hospital staff, and reviews of hospital policies and guidelines. Both the CEC and the CEC Support Group meet every six weeks (for, respectively, 3 and 1.5 hours). The types of issues that these groups have considered include: end and beginning of life issues; confidentiality and trust in human resource management; a professional's refusal of fertility treatment in mentally impaired adults; refusal of vaccination; treatment of a pregnant illegal refugee; proponents of ‘unassisted delivery’ and double-effect of treatment of fatal lung bleeding.
Current policy regarding euthanasia in the Netherlands
The case under discussion here concerns the processing of a euthanasia request in a setting where such requests are legal. We will therefore not consider the moral aspects related to euthanasia per se. However, in order to give some contextual background, we will briefly describe the legal aspects of euthanasia practice in the Netherlands. One of the reasons for writing up this particular case is that much of the debate on euthanasia, and the publications which consider the issue, focus on the arguments for and against euthanasia in general. These discussions therefore can neglect the moral dimension of the practice of euthanasia, and in particular the processing of requests for euthanasia. For even if a medical professional is willing to accept that euthanasia may be appropriate in certain situations, there is then still a moral dimension about how to actually proceed with such requests. This case study makes the case that we should not only ask ‘What is the morally right thing to do?’ but also focus on the question ‘How should we execute it in the morally correct way?’
The Dutch Ministry of Foreign Affairs 2 has outlined its stance on euthanasia. 3 In the Netherlands, euthanasia is understood to mean termination of life by a doctor at the request of a patient. Euthanasia is still a criminal offence, but the Criminal Code has been amended to exempt doctors from criminal liability if they report their actions and show that they have satisfied the due care criteria formulated in the Act. The actions of doctors in such cases are assessed by review committees appointed by the Minister of Justice and the State Secretary for Health, Welfare and Sport. Where a doctor has reported a case and a review committee has decided on the basis of her/his report that she/he has acted with due care, the Public Prosecution Service will not be informed and no further action will be taken. But where a review committee finds that a doctor has failed to satisfy the statutory due care criteria, the case will be notified to the Public Prosecution Service and the Healthcare Inspectorate. These two bodies will then consider whether or not the doctor should be prosecuted.
When dealing with a patient's request for euthanasia, doctors must observe the following due care criteria. They must:
Be satisfied that the patient's request is voluntary and well-considered; Be satisfied that the patient's suffering is unbearable and that there is no prospect of improvement; Inform the patient of his or her situation and further prognosis; Discuss the situation with the patient and come to the joint conclusion that there is no other reasonable solution; Consult at least one other physician with no connection to the case, who must then see the patient and state in writing that the attending physician has satisfied the due care criteria listed in the four points above; Exercise due medical care and attention in terminating the patient's life or assisting in his/her suicide.
Doctors considering a euthanasia request can turn to one of 600 or so specially trained doctors for support. These ‘Support and Consultation on Euthanasia in The Netherlands’ (SCEN) doctors act to support and improve the quality of euthanasia. Specialist training has been provided by the Dutch Royal Medical Association.
Summary of the case
Susan, a 67-year-old woman with Parkinson's disease, had consistently thought about the possibility of euthanasia, should her disease become more severe. Susan and her husband had discussed a possible request for euthanasia with their GP on several occasions and her feelings were consistent over time. A signed and witnessed advance statement was discussed and deposited with the GP. This stated that Susan would like to request euthanasia in a set of specific circumstances. The GP's response was that he was not against euthanasia on principle but that all treatment and palliative options should have been discussed, attempted and exhausted, before euthanasia could be considered.
In 2010, Susan was diagnosed with progressive metastatic breast cancer and she subsequently started a formal euthanasia request procedure with her GP. However, due to her poor physical health, she was admitted to a district hospital for acute care. Here a euthanasia request was once more discussed and considered, but uncertainty about how much this request had to be considered afresh and ongoing medical investigations caused a considerable delay. By the time that euthanasia was approved, continuous palliative sedation had already been commenced which was considered incompatible with a euthanasia procedure. Contrary to medical expectations, Susan survived for 100 hours in this situation and died alone in hospital without her family present.
The following is a brief summary of pertinent medical details leading up to Susan's death:
Week 1, Monday
Susan consults GP due to pain and oedema in the right arm. Immediate referral to the hospital resulting in a diagnosis of inoperable breast cancer; distant metastases in lymph nodes and bones. Chemotherapy is considered but Susan declines: ‘I am exhausted and ready to die. My life is fulfilled’.
Thursday
Radiotherapy is offered but Susan declines. After discussion she is persuaded that it may offer her some relief and an appointment is made for the following week.
Week 2, Tuesday
Susan's husband calls the emergency services at 05:30 due to her sudden onset of weakness. Intravenous fluids are started due to dehydration. She is considered too unwell for radiotherapy which is cancelled. Susan repeats her request for euthanasia and mentions her extensive prior discussions with her GP. A brain scan is considered; metastatic deposits in the brain would confirm her near terminal condition and euthanasia would be offered. Susan's family is concerned that her requests are being ignored and too many medical interventions are being offered.
Thursday
Team discussion at Susan's bedside. Susan again repeats her request to die and insists that she has had enough. One of her specialists replies that it is his job to decide what happens next. A psychiatrist assesses Susan for depression.
Friday
Susan continues to deteriorate, is exhausted and only drinking and eating small amounts. Results of the brain scan show no metastases. A fourth specialist, a clinical oncologist, assesses Susan and concludes that further medical treatment is futile. The GP visits to finalize the euthanasia request and to transfer Susan to a local hospice where euthanasia can be performed. However, before the transfer can be made, her condition deteriorates; she is catheterized and considered too poorly to transfer to the hospice. By now her family also considers her too unwell to move. The fifth specialist involved now identifies herself as the euthanasia coordinator. She informs the family that she will start the euthanasia procedure which will take some time, and a standard brochure outlining the hospital's euthanasia guidelines is provided. The importance of careful discussions both within the medical team and the independent euthanasia consulting team are stressed. Later that day, she mentions that specialist 1 and 2 do not want to be involved in the euthanasia procedure.
Week 3, Monday
Three independent specialists assess Susan's situation as required by Dutch law. They decide that euthanasia is justified. The procedure is, however, postponed until the next day because the euthanasia coordinator has not yet received the written report from the SCEN physician.
Tuesday
There is further delay because the euthanasia coordinator wanted to check whether the request was legally valid by calling the public prosecutor. Susan's family complain about the continuing delay and are reassured that euthanasia can be performed the next day.
Tuesday night and Wednesday morning
Susan's condition deteriorates further. The specialist suggests starting continuous palliative sedation via an opiate infusion because of Susan's distress. According to the specialist, the sedation would speed up the dying process and probably also bypass the euthanasia procedure. It is anticipated that such an approach would result in a fairly rapid death (between 2 and 24 hours) although the family is told that it is not possible to predict exactly when death will happen. The family wants to respect Susan's wish (for a dignified, unprotracted death), and therefore give consent for continuous palliative sedation. The family members say their goodbyes and an opiate infusion is commenced at 13.00.
Thursday and Friday
More than 24 hours pass and the family is told that there is no other option than to wait. The family considers the process to be inhumane. Attending specialist announces he will now be away for four days. Susan's family is distressed because they are witnessing exactly the sort of death that she always wanted to avoid. Relations with medical team decline.
Saturday
The family is called at 06:00 because Susan's situation is now critical. They visit but return home later that day. During the day infusion rates are increased twice. Just as the family is on their way back for their evening visit, they are called to say their mother has died, some 100 hours after the start of the opiate infusion.
The GP's letter
A two-page letter to the Board of Directors of the hospital stated that the GP was taken aback by the aggressive course of Susan's breast cancer. He wrote: ‘I was willing to execute her euthanasia request if there was no treatment option left. Susan made this very clear on admission to your hospital and she repeated this many times during her stay. After three days of investigations the staff concluded that there were no treatment options left, so the euthanasia procedure could start. Therefore a SCEN physician, a geriatrician and a psychiatrist were consulted in order to fulfil the legal requirements. All three reported that the case fulfilled the official criteria for a legal euthanasia request. Unfortunately, due to a combination of events, the euthanasia request was not carried out and the woman died after 4 days of continuous palliative sedation. This has had a deep and negative impact on the family; they felt powerless, sad and frustrated. However, they do not want to write a formal letter of complaint. At the same time they want to contribute to the quality of future care in similar situations and prevent a similar occurrence. For me, as a GP, I was shocked by the slow and bureaucratic processing of this clear and legal request for euthanasia. Although we want the best for our patients, it seems as if “the process” makes us as powerless as the family.'
He ended the letter with two key questions:
Could the CEC advise whether the existing guidelines concerning euthanasia and sedation should be adjusted to prevent a similar situation? Could the Board of Directors explore whether it is possible for GPs to perform euthanasia in the hospital in cases like this, and if so, which legal and organizational conditions should be met?
The letter was copied to the SCEN physician, the physician member of the Regional Committee for Euthanasia and the local organization for GPs (for participatory reflection about the issues in this case).
The case discussion within the CEC
The case discussion started with an inventory of the expectations and goals of the case discussion. There was an agreement about three central goals: (a) identifying different moral issues within the case; (b) exploring the different views and arguments on the selected moral issues; and (c) formulating the central points for the letter of advice to the Board of Directors. Subsequently, the following (moral) issues were identified:
Were Susan's considered opinions and wishes central enough in her care (i.e. is this a good example of patient-centred care)? If not, who, or what, was to blame? Was the specialist's response to Susan (‘my job to decide what happens next’) an obstruction to a legally valid request, evidence of moral opposition to euthanasia or an inappropriately paternalistic stance towards the patient? GPs are more likely to have ongoing long-term relationships with their patients, unlike hospital specialists, whose relationships with their patients are more likely to be short term and fragmented. Specialists tend to focus on the problem that ‘has to be fixed’. What are the (moral) consequences of the different characteristics of these relationships for the processing of a euthanasia request? Is it morally acceptable and feasible to transfer a euthanasia request that already has been deemed valid in one setting to another setting? Should we allow GPs, who are not employees of a hospital, to perform euthanasia in the hospital? What are the legal, moral and psychological conditions and consequences? How can a medical specialist continue or take over a request for euthanasia for a patient that he or she does not know? And what kind of adjustments are necessary to make a decision about whether or not to continue a request for euthanasia (e.g. time intervals, shift structure)? Are medical specialists explicit and open enough about their moral position on euthanasia (both professionally and personally) in order to process a euthanasia request or to refer a euthanasia request to another colleague? For example, could it be that certain medical investigations are primarily performed because of moral uncertainty or resistance about the euthanasia request? What are reasonable adequate timescales for the processing of a euthanasia request? Does the starting of continuous palliative sedation resemble moral or psychological resistance to execute euthanasia or a moral preference for sedation instead of euthanasia? When is it morally acceptable to start continuous palliative sedation (instead of intermittent sedation) when a euthanasia request is still under consideration or has already been approved?
In order to formulate their view on these moral issues, points of clarification were sought from CEC members and moral issues were reflected upon in a structured discussion. At the end of the meeting, the facilitator selected the central moral issues to be included in the letter of advice to the Board of Directors. Finally, the Chair of the CEC summarized the conclusions and suggestions for each moral issue and prioritized the points in order of importance.
CEC's letter of advice
The CEC started its letter of advice to the Board of Directors with the preliminary remark that the CEC acknowledged its response was based solely on the letters from the family and the GP, together with additional information from the GP during the case discussion. The committee had not been able to ascertain the perspective of the medical and nursing staff in the hospital and it was recommended that these people should be consulted before the Board of Directors came to any conclusions or recommendations based on this case.
The CEC further noted their respect for Susan's family and applauded their request to ask the hospital to reflect on whether care had been optimal in this case. The CEC noted that social scientific research has demonstrated that an open learning climate stimulates the quality of care and interprofessional cooperation in hospitals. The CEC therefore suggested that the Board of Directors should use this opportunity to stimulate critical, yet constructive, reflection among their employees, as well as to promote a positive learning attitude within the institution.
The CEC then summarized its views and recommendations:
The hospital's mission statement declares that the patient's interests should always be central in the care process. The CEC concluded this should apply equally where patients have moved from one care provider to another. Prior wishes should be noted and included in care plans wherever possible, and where not, the reasons should be clearly communicated with a patient and their family. In Susan's case, her request for euthanasia should have been respected and explored on admission and any problems in meeting her request should have been clearly communicated both to her and her GP. Dutch law considers euthanasia an exceptional form of care, and therefore requires any health professional involved in such requests to carefully consider their own stance towards such requests. The CEC noted an apparent paradox here: due to the number of staff involved in the care of a hospitalized patient, and the range of individual opinions about euthanasia, it is possible that the coordination and the continuation of a prior euthanasia request could be delayed or become confused. The CEC opined this was a case of ‘poor coordination and communication; initially of an ongoing request for euthanasia and, subsequently, of a formally and legally approved second request for euthanasia’. They noted that a coordinator had not only been identified too late, but that even once appointed, communication relating to the request was unclear and fragmented. It was not clear to the CEC how much this fragmented coordination of care was simply a result of practical issues (such as shift practices and perhaps lack of experience) or how much a more fundamental resistance to the request played a part. Conscientious objection to euthanasia is understandable and acceptable, but not communicating this with Susan and her family is not. In this respect it is important to note that Dutch law exempts medical staff who have moral objections to euthanasia from this practice, but they need to ensure referral to other specialists who may not have such objections. The CEC further opined that euthanasia should continue to be a very exceptional medical procedure, for patient, family and medical staff, and that they in no way wanted to encourage future requests to be automatically processed. However, the CEC recommended that future requests for euthanasia should be clearly directed to one identified medical specialist who would then coordinate both the request and the communication with the patient and family. Euthanasia requests should remain a very special circumstance which should in no way be viewed as simply a request for a technical procedure which could be performed by a range of medical staff. Furthermore, the coordinator of the request needs time (i.e. regular shifts during the request procedure) to reach the point at which she/he, together with the patient and family, becomes convinced that euthanasia is appropriate in this situation for this person. The time taken should include not just that necessary to arrange the formal legal and medical aspects of the procedure, but also time for building a relationship with the patient and for adjustment to the appropriateness of the euthanasia request. This resulted in four practical recommendations:
It should be clear among medical staff who, in principle, is morally willing and able to (a) process a request for euthanasia and (b) perform the actual euthanasia. Those who are available still hold the moral freedom to refuse or withdraw for either ‘a’ or ‘b’. In any particular situation it should be clear which medical specialist coordinates the request for euthanasia. She/he should be the ongoing point of reference for the patient and the family. In any particular situation, it should be clear who is willing and able to perform euthanasia once all the medical and legal conditions have been met. Ideally, this would be the same person as the one who processes the request. In order to guarantee continuity of care and good relations with the patient and her/his family, those who are responsible for processing the request and performing the euthanasia should adjust their work patterns so that that they are available. In the event that there is no available medical specialist willing and able to perform the euthanasia procedure, the hospital should consider inviting the patient's GP to perform the euthanasia. Euthanasia could then be performed by the GP either in the hospital or at the patient's home, depending on their wishes. In order to be prepared for such an exceptional situation, there should be good communication between the hospital's medical staff and the GP. This would be a good example of patient-centred care. Also, the medical specialist should consider performing the euthanasia at the patient's home. The CEC noted that such a change in practice will require consideration of any legal constraints, and therefore recommended that the Board of Directors explores these. These should be included in hospital policy and guidelines for euthanasia. The CEC further recommended that a thorough case evaluation should be compulsory after euthanasia has been performed. This should include any health-care professional involved in the euthanasia delivery. During this meeting, the following topics should be addressed: personal reflections; team cooperation and communication; technical aspects of the euthanasia procedure; points for clarifications and improvement; and suggestions for adjustments of current policy and guidelines. The CEC considered that the mixed use of continuous palliative sedation and (a request for) euthanasia was potentially confusing. If a patient is awaiting a response to a request for euthanasia, then continuous palliative sedation should not normally be started, since this may well preclude euthanasia. If palliative sedation is required, this should be thoroughly discussed with the patient and their family and not – as happened in this case – communicated with overly optimistic estimations of the moment of dying. If required as an emergency producedure, then only short-acting agents should be used (i.e. intermittent sedation). The CEC queried whether all health professionals were adequately informed about the legal and professional guidelines for euthanasia. Greater education and support may be required. The CEC also recommended that the SCEN physician be recognized as an important source of early support. Since the numbers of SCEN physicians are set to expand, such support may become easier to realize. Finally, the CEC would like to thank Susan's husband for writing his helpful letter which highlighted several useful learning opportunities. The CEC thought it important to feed back to the family both in general terms and specifically how policy recommendations will change as a result of their letter.
Summary
This case contains several unusual issues. First of all, euthanasia is, itself, always exceptional for all participants involved in the euthanasia request or procedure. There are always a large number of moral and emotional dimensions. In comparison with other countries, the Dutch legal approach remains unusual. Furthermore, this case reflects an apparent paradox: the specific engagement and careful considerations that are inherently connected with a euthanasia request may result in a time-delay that can, on occasion, result in a poorer quality euthanasia process. With respect to the work processes of the CEC, another consideration should receive some attention: it is difficult for a CEC to judge from the outside – even with the detailed letter from the family and the presence of the GP during the meeting – whether the relatively long time it took to process this euthanasia request was a matter of (unintentional) negligence or over-protective caution. The CEC has made it explicit that a good understanding of a situation should precede any moral judgement. Understanding requires discussions with, and involvement of, all of the actual stakeholders. In the end, taking more care over the actual process of dialogue and understanding might improve the quality of care much more than analysing the moral aspects of the case.
We conclude with a final reflection on what made this case unusual. This case was not about the moral and legal aspects of euthanasia as such, but more about the processing of a request for euthanasia and an appropriate and respectful management of such a request. We found that the moral aspects of this case included not only arguments, opinions and decisions about euthanasia, but also practical and organizational issues that influence how the hospital and its employees deal with ethical issues. Thus, the organization of work processes, the way staff communicate and the presence (or absence) of an open learning climate all have moral consequences in relation to the practice of euthanasia.
Footnotes
Acknowledgements
The authors wish to thank Susan's family for their consent for their experience to be used for reflection on the moral issues in the case. The authors also wish to thank the members of the CEC for their consent and their suggestions for revision, especially the GP and the chair of the CEC.
Guest: General practitioner. Present members of the CEC: Geriatrician & SCEN physician, Consultant in Palliative Medicine (CEC chair); Division Manager; Two nurses; Anaesthetist & Head of the Quality Management Team; Paediatrician; ENT specialist; Ethicist; Hospital chaplain.