Background: Caring for terminally ill patients is a meaningful task, however the patient’s suffering can be a considerable burden and cause of frustration.
Objectives: The aim of this study is to describe the experiences of general practitioners (GPs) in The Netherlands in dealing with a request for euthanasia from a terminally ill patient.
Methods: The data, collected through in-depth interviews, were analysed according to the constant comparative method.
Results: Having to face a request for euthanasia when attempting to relieve a patient’s suffering was described as a very demanding experience that GPs generally would like to avoid. Nearly half of the GPs (14/30) strive to avoid euthanasia or physician assisted suicide because it was against their own personal values or because it was emotional burdening to be confronted with this issue. They explained that by being directed on promoting a peaceful dying process, or the quality of end-of-life of a patient by caring and supporting the patient and the relatives it was mainly possible to shorten patient’s suffering without “intentionally hastening a patient’s death on his request”. The other GPs (16/30) explained that as sometimes the suffering of a patient could not be lessened they were open to consider a patient’s request for euthanasia or physician assisted suicide. They underlined the importance of a careful decision-making process, based on finding a balance between the necessity to shorten the patient’s suffering through euthanasia and their personal values.
Conclusion: Dealing with requests for euthanasia is very challenging for GPs, although they feel committed to alleviate a patient’s suffering and to promote a peaceful death.
- end-of-life care
- requests for euthanasia
- experiences of general practitioners
- patient’s suffering
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- end-of-life care
- requests for euthanasia
- experiences of general practitioners
- patient’s suffering
Caring for terminally ill patients has been described as an essential aspect of a general practioner’s (GP) experience which can often be very rewarding.1–3 The continuity of contacts, the long-standing relationship with patients, the fact that the care is embedded in a family and community relationship, working as part of a team to co-ordinate the care, controlling symptoms, providing psychosocial support, communicating honestly with patients and their family, and supporting relatives of the dying, have been described as the most valuable aspects of a GP’s experience in caring for the terminally ill.2 3 Furthermore, feeling satisfied about their own experience of caring for the terminally ill appeared to be closely related to the GP’s emotional involvement in the patient’s situation.2
However, caring for terminally ill patients has also often been described as distressing and frustrating, and as a source of psychiatric morbidity in physicians.4–6 Difficulties related to symptom control, dealing with the emotional distress of the relatives and attending to the psychosocial needs of the patients have been described as the most frustrating aspects of end-of-life care.1 3 The GP’s long-standing relationship with the patient and intimate involvement in the patient’s situation might lead to strong emotional reactions and to emotional distress, particularly when the patient dies.3 6 7 It has also been suggested that this involvement of GPs with the terminally ill could lead to a lack of confidence in their own ability to relieve a patient’s symptoms successfully and to difficulties in coping with a patient’s request for euthanasia.3
Surprisingly, even if dealing with requests for euthanasia or physician-assisted suicide (EAS) is recognised as being a considerable burden, only a limited amount of research has investigated the GP’s experience of dealing with a request for EAS from a terminally ill patient who is suffering.8–10
GPs are the physicians who are most often confronted with a patient’s request for EAS and assisted suicide in the Netherlands.11 They also are increasingly more often involved in developments and training related to palliative care. The aim of this study is to describe GP’s experiences of dealing with requests for EAS from terminally ill patients and to gain insight in factors that are related to their restrictive attitude towards euthanasia.
The GPs participating to a nationwide study of end-of-life decision-making practices in The Netherlands11 were asked whether they would like to participate in a further qualitative interview about their experience with regard to end-of-life care and more explicitly with requests for EAS. Eighty-one (65%) of the 125 GPs who were randomly selected for participation in the nationwide study of 2001, were willing to participate in the qualitative study. A purposeful sampling method directed at gaining insight in GPs attitudes, especially in factors related to a restrictive attitude of GPs towards euthanasia was used. Therefore the main criteria used to select GPs from these 81 GPs was being restrictive towards euthanasia, other criteria were also used—for example, age, gender, location of general practice. After 31 interviews it was judged that enough data had been collected in order to describe physicians’ experience. Because one of the interview tapes was damaged, only 30 interviews could be used for the purpose of the present study. The characteristics of the physicians who participated in the study are described in table 1.
Data were collected through in-depth interviews between September 2002 and March 2003. Initial questions were aimed at gaining insight into the background of the medical practice of each GP interviewed and their experience with caring for terminally ill patients. The questions were derived from topics of interest related to a GP’s opinion about end-of-life care and medical end-of-life decisions, mainly focussing on experiences and attitudes with euthanasia. The topics formed the basis from which the interviewer or the GP could diverge in order to explore an idea in more detail.12 13 (box 1)
All the interviews, which were conducted by the same researcher (AMT) took place in the GP’s practice, lasted 1.15 to 2.5 hours, and were tape-recorded.
The interviews were transcribed verbatim. The analysis took place in accordance with the principles of the constant comparative method, and was aimed at identifying recurrent themes with regard to the GP’s approach when dealing with a request for euthanasia.14–16 The analysis included coding data repeatedly, moving from a concrete to a more abstract level of coding, formulating themes, looking for concrete indicators of the themes, and writing memos. Initially, the analysis was performed “by hand”, but subsequently supported by the use of a Winmax computer program.17
Box 1 Main topic of interview
GP’s experiences as a physician
The kind of general practice and the patient population
GP’s experience with caring for terminally ill patients
GP’s experience with euthanasia
Requests for euthanasia from patients
(Changes in) attitudes with regard to end-of-life care and euthanasia
Opinion about the relationship between palliative care and euthanasia
Opinion about further developments with regard to end-of-life care
The results of the analysis were regularly discussed by the researchers (JJG & AMT) in order to identify inconsistencies and to determine relevance of the interpretations. Presentation of the findings to other members of the research team (BOP, G vd W) resulted in further clarification and verification of the results.18–20
The GPs described caring for terminally ill patients as a very important and meaningful part of their function. They considered their task to be mainly concerned with the patient’s quality of life, alleviating the patient’s suffering and supporting the patient and the relatives. They emphasised the importance of being available when necessary for the patient. They explained that caring for the terminally ill was a very meaningful experience, not only because of their increased role in (co-ordinating) the care, but also because of their particular involvement in the patient’s situation.
I think that you go down an emotional path with the patient. Unfortunately we do not have any more births, that’s a pity because I enjoyed that. Then you are very close to people. But when you are with people who are dying, then you are very much closer. Almost closer than when someone is having a baby… (Woman 45–55 years old)
However, all the GPs described dealing with requests for EAS from terminally ill patients as very demanding and as a heavy responsibility. They frequently talked honestly about the way in which they tried to cope with euthanasia requests and about the emotional consequences of having to perform euthanasia.
I think people don’t really realise what it means for a GP to have to perform euthanasia. They think “the doctor will come and give the patient an injection, and that’s it.” They forget everything about what has to happen beforehand, that you have to think about it and that you are emotionally very much involved. The day that you do it you can’t do other work. I don’t mean this in a negative way, but you can’t do anything else. It’s drastic. In the past you were also confronted with the coroner, the Public Prosecutor had to be called, and then you had to wait until you were informed whether or not everything was right, and you were finally informed that it would not become a court case. (Man 55–65 years old)
GPs made clear how important it is, whatever they decide about a request for euthanasia, to be sure about their decisions and to feel at ease about the way they try to lessen a terminally ill patient suffering.
Their approach to a request for EAS was mainly related to their opinion on EAS and the end-of-life of a patient. Some of them, nearly half of the interviewed GPs, strove to avoid having to perform euthanasia believing that it could be possible to lessen a patient’s suffering in another way—for example, by using morphine or paying attention to the quality of life of a patient. The other GPs described that they were open to considering the request of a terminally ill patient who was suffering. These approaches are described below.
Considering other ways than EAS to lessen a terminally ill patient suffering
Some GPs (6/30) stated that they were not in favour of performing euthanasia and explained that they tried to avoid having to perform euthanasia above all because euthanasia was not compatible with their own way of alleviating the suffering of terminally ill patients. Some of them (3/6) underlined that their attitude against euthanasia was related to their religious beliefs, other GPs (3/6) underlined being uncertain about their own ability to cope with hastening a patient’s death intentionally.
I can quite well imagine that whenever the body gives up, or when someone is terminally ill, you have to accept that and let the patient die. If there is something that can make the process faster I will never oppose that. If somebody has signs of general fatigue, cancer with complications like a lung infection, etc […] and would have a peaceful death, I wouldn’t bother the patient with treatment. I think dying in such a way is part of life. But actually to give someone an injection, and then being confronted with the responsibility… I don’t want that. I still find it nasty, I’m against it, just like abortion, I will never do that. If someone else wishes to do it... (Woman 45–55 years old)
These GPs (6/30) explained that, instead of euthanasia, they preferred to administer large doses of opioids and terminal sedation in order to alleviate the suffering of the terminally ill patient. They stressed that such medical decisions are directed at supporting the (dying) patient but not intentionally hastening the patient’s death. Because they often preferred not to interfere directly with the dying process they chose to wait a while before taking a medical end-of-life decision, anticipating that the death could happen soon without any need for external interference.
Sometimes I’m working on the borderline, and I know this. When I have a patient who is very bad, short of breath or with a lot of pain, then I don’t begin with 20 mg of morphine but with 40 mg, and I say that I will come back after 6 hours and, then I will give another 40 mg. Then the patient often dies the same evening or the next morning. That is then the final stage. Then you fill on the forms that the patient died a natural death. Mind you I speeded things up a bit. I call this supportive policy; to me it’s nothing more than that. (Man 45–55 years old)
Other GPs (8/30) explained that their main aim was to enhance the patient’s quality of life and to lessen the patient’s suffering by actively caring for and supporting the patient and the relatives. GPs valuing this approach did not strive to directly avoid dealing with euthanasia requests, but rather to prevent requests for euthanasia being made by enhancing the quality of life of their patients. They emphasised that it is important for the patient and the relatives to feel supported, and they therefore appeared to pay much attention to developing a caring relationship with the patient and being available especially when they were most needed by the patient.
Delaying things is my own problem… But it has something to do with palliative care, which has to be very good. A request for euthanasia is only a request, but it is a request with a lot of implications. Making sure that the palliative care is very good is a question of knowledge and motivation. Your knowledge has to be very good, so then you know what you can do, and your motivation implies, that you are fully supporting the patient. That you also say: ‘listen, I will come to visit you on Saturday and Sunday as well whenever you need me’. It is sometimes enough just to pay more attention. Then perhaps it will not be necessary to perform euthanasia so often. (Man 55–65 years old)
Some of these GPs (5/8) stated that they had also realised that euthanasia could otherwise have occurred because they were feeling powerless as a GP and because they were no longer successful in treating the patient’s symptoms or alleviating the suffering. Therefore they strove to enhance their ability to care for the terminally ill so that they would be less often confronted with this kind of situation.
Naturally we‘ve all had the standard training, but we have also organised other post-schooling courses. You have to be very well informed about palliative care in order to be able to make a sound judgement about a euthanasia request. If a patient says: “I want to die”, there are a lot of important aspects. You then have to find out what the suffering actually is. It is also possible that the palliative care was inadequate, or that the doctor didn’t know what he had to do. (Man 45–55 years old)
Furthermore, some of them (3/8) explained that terminally ill patients often feel vulnerable and are not always able to make the appropriate decisions about their own situation. Therefore, it is important to deal with a request for euthanasia very cautiously, to establish how such a request had evolved, and to determine whether by improving the care or adjusting the treatment of symptoms it would be possible to restore the situation and to make euthanasia less desirable. These physicians (8/30) who emphasised the importance of a caring attitude in order to enhance patientś quality of life explained that since their attitude had changed they no longer had to perform euthanasia. However, they did not totally reject the idea that euthanasia could be necessary as a last resort.
I’m approaching the patient in a different way, I now say “You have an incurable illness, I know a lot about it and I would like to look after you, as soon as you are back home. Will you call me then, so that you can talk about what you can expect from me”. That is a very different story, people are now opting for palliative care because I can offer it. In the past I could either do nothing or I could perform euthanasia, but now I can offer palliative care. I tell them and that is what they want. However, some of them still want euthanasia, and that is OK, but now nearly as many as in the past. (Woman 45–55 years old)
Being open to considering a patient’s request for euthanasia
Other GPs (16/30) made it clear that even if they would like to avoid to have to perform euthanasia they were prepared to carefully consider a patient’s request for euthanasia. Most of them emphasised the seriousness and burden of having to deal with a request for euthanasia as a GP and appeared to approach euthanasia very cautiously. Their decision-making process concerning a patient’s request for euthanasia was based on conscientiously balancing the necessity to perform euthanasia and respect for their own values. They emphasised that they had to be sure that they would make the right decision about euthanasia.
Yes I think it could sometimes be a sort of trap that can’t be avoided. That in spite of everything you can offer, a terminal stage can be so heavy, perhaps too heavy for a patient. In fact, I always see it as an emergency exit. When I am talking about it with a patient I say “yes we will consider it, if you don’t want to go on any longer and if I have nothing more to offer you to make it better”. These are two important things for me.
If the patient says: “I really don’t want to go on any longer because I’m suffering so much from such or such a complaint and I can’t live with this”. Then I have to say: “Well, I have nothing more to offer, you’re already having the maximum treatment”. But I think it’s important that patients ask for it themselves. (Man under 45 years of age)
These GPs explained that they therefore first had to establish that they were not able to alleviate the patient’s suffering any further or to treat patient’s symptoms effectively before they could focus on the patient’s request for euthanasia. Some of them also stressed the importance for terminally ill patients of being free to choose euthanasia when their life-expectancy is very limited.
The GPs explained that even if it might be very difficult for them to have to cope with the patient’s request and subsequently to perform euthanasia, they were prepared to extend their own limits. However, it was essential for them to be able to cope with the consequences of performing euthanasia.
When do you have a clear conscience about it [euthanasia] as a physician?
When you feel that you have to deliver someone from his suffering, and I know that it could change from one moment to another, but you also don’t want to create a problem for yourself. I mean, I also have to have a clear conscience about this issue… This is when I feel that I have no doubts about the respectability of this intervention. (Man 45–55 years old)
For the GPs, the decision-making process appeared to be directed not only at considering the rationale for euthanasia, but also preparing themselves in order to actually be able to perform euthanasia and to overcome their own personal barriers. It was, for instance, crucial for most of them to have enough time to think about the patient’s request, not to be forced to decide quickly, and to feel sufficiently emotionally detached from the patient’s situation.
In their opinion, end-of-life care was mainly directed at the adequate treatment of symptoms. Some of them for example thought that the most significant developments concerning end-of-life care were related to the administration by pump of drugs such as morphine. Most of them explicitly stated that they did not believe that palliative care could influence the occurrence of requests for euthanasia. They explained, for example, that because the initiative for palliative care was taken by the physician and euthanasia was requested by the patient, this had to be seen as two individual processes that were evolving independently. Even if recent developments in palliative care have resulted in attention being paid to the psychosocial and existential problems of the terminally ill, palliative care should in their view never be seen as a substitute for euthanasia.
I feel that there will always be situations in which somebody will have a lot of pain, that you can’t do anything about, except by masking it with morphine or that other symptoms that are difficult to treat will develop, such as dyspnoea… You can do a lot with palliative care, make sure that someone receives good care, or home care, guiding someone very intensively with everything that is available. However, there will still be situations that you can’t control. (Man 55–65 years old)
Being confronted with requests for euthanasia was often a source of concern for GPs. Several approaches toward intentionally hastening a patient’s death emerged. There were GPs (6/30) who mainly want to consider other ways than EAS to lessen a terminally ill patient’s suffering because of their own principles and because it might be too demanding to have to cope with a request for euthanasia and to perform euthanasia. Among them there also were GPs (8/30) who emphasised the importance of enhancing the patients’ quality of life and alleviating the suffering by caring for and supporting the patient and the relatives. These GPs were less often confronted with the necessity to consider euthanasia in order to relieve the suffering of a terminally ill patient.
Other GPs (16/30) were prepared to consider a patient’s request for euthanasia, but underlined the importance of being sure that no other options for alleviating the patient’s suffering were available. When being convinced of the necessity of euthanasia they were better able to extend their own limits related to hastening a patient’s death intentionally, and were willing to perform euthanasia.
GPs (6/30) who strove to consider other ways than EAS to shorten the suffering of terminally ill patients were concerned by their own opinions and values and also by their ability to cope with EAS. They make clear that having to face a request for EAS and to perform euthanasia might have an important (emotional) impact on a physician. Their approach shows how physicians when confronted with the unbearable suffering of a terminally ill patient and with requests for euthanasia strive to find a balance between lessening the suffering of a terminally ill patient and being able to remain attentive at their own opinions and values.
Some of them appeared to not stress the importance of enquiring about the patient’s expectations and wishes with regard to the end of life and above all to be concerned about assuring a “peaceful” dying process, for instance by giving large doses of opioids or by applying some form of terminal sedation. Expressing by this the importance of supporting a peaceful and more natural dying process instead of explicitly hastening the patient’s end of life at the patient’s request on a more direct and fast way—for example, euthanasia—in order to be able to cope with their role in the dying process.
It is possible that due to lack of knowledge about palliative care they feel less able to care for the terminally ill patient and to actively address aspects of care that might contribute to the end-of-life quality. Other GPs (8/30) who also strove to consider other ways than EAS to lessen the suffering of patients underlined the importance of caring and of supporting the patient and the relatives. They appeared to be concerned about protecting the patient, who they believed was often vulnerable and not always able to make an appropriate decision. They believed that it could be possible to make euthanasia less necessary by increasing the quality of care. They underlined the importance of palliative care and of maintaining or enhancing the patient’s end-of-life quality and alleviating the suffering. In contrast with their feelings in the past they now felt less powerless when caring for the terminally ill, were more confident about their ability to address the patient’s suffering through palliative care and were also more confident about the possibility of avoiding or to postpone requests for euthanasia.
GPs (16/30) who were prepared to consider a patient’s request for euthanasia, and subsequently to hasten a patient’s death intentionally, did not appear to actively try to avoid the development of a request for euthanasia through their care for the patient. Apparently, they accepted the fact that in order to relieve a patient’s suffering and to respect the final wishes of a terminally ill patient it would sometimes be necessary to perform euthanasia. They did not appear to choose EAS because they did not feel confident about their ability to address the suffering of a patient in another way. They underlined that they first have to be persuaded about the requests of the patient and that euthanasia might be the ultimate answer to the suffering. Results of other studies have also indicated that physicians often strive to make compromises when facing difficult situations.21
The results of this study show that it can be a profound experience for GPs to care for a terminally ill patient, on the one hand perceiving how meaningful it can be to care for the terminally ill, and on the other hand having to face the patient’s suffering and trying to find the most appropriate way to lessen this suffering. GPs have to be carefully trained in order to be able to take a sensitive approach to the patient’s wishes about end-of-life decisions. A context of openness about euthanasia will certainly encourage physicians to talk about their own experience of caring for the terminally ill and dealing with requests for euthanasia. In this respect they might find some support in developing a well-balanced approach to the suffering of the terminally ill and in coping with aspects related to the alleviation of this suffering that might be emotionally disturbing.
This study has several limitations. The descriptions of the attitudes of the GPs are based only on data collected by means of interviews. It is probable that, if data were also collected by means of observation a wider range of aspects related to the attitudes of the GPs might have been described.12 13 22 Furthermore, it is important to realise that the aim of the study was only to investigate the experience of the GPs, and not the patient’s experience or any other issues related to the relationship between the quality of end-of-life care and euthanasia.
Furthermore, as purposeful sampling was used to select study participants who had a restrictive attitude towards euthanasia the characteristics of the participants—for example, age, gender, are not entirely representative for GPs in the Netherlands, which limits the external validity of the results. However, by over sampling GPs who had described being restrictive towards euthanasia during the nationwide study we were able to gain more insight in GPs experience and attitudes with regard to euthanasia requests and in factors that are related to a restrictive attitude towards euthanasia.
Therefore, we believe that our data provide considerable insight into the experiences of GPs in alleviating the suffering of terminally ill patients and in dealing with requests for euthanasia. It has been described that physicians are mainly resolving their own sense of helplessness when granting a request for euthanasia.10 However the results of the present study, in line with other studies,8 23 underline the importance of a physician’s commitment in treating the suffering of terminally ill patients and of being persuaded that euthanasia might contribute to the quality of the dying process in order to cope with a request for euthanasia.
It might be hazardous to conclude from these data that GPs in the Netherlands are becoming more restrictive with regard to euthanasia. However the results indicate that GPs are considering thoroughly a patient’s situation when facing a request for euthanasia of a terminally ill patient.
The results of the study show that the attitudes of GPs towards requests for euthanasia are mainly based on their opinions and feelings about (performing) euthanasia, their opinions about the relationship between palliative care and euthanasia, and their attitude towards a patient’s preference with regard to end-of-life decisions. The complex interplay of these factors illustrates how GPs all strive in their own way to find a balance between their own values and the need to alleviate the suffering of terminally ill patients.
The results of the study underline the importance of being prepared as a physician to care for the terminally ill patient, not only to treat symptoms but also to address the subjective aspects related to terminal illness such as patientś concerns and to communicate sensibly with a patient. In this way developing a comprehensive approach to the suffering of the terminally ill patient and addressing patients wishes with concern to the end-of-life early during the illness process.24
Funding: Dutch Ministry of Health, Welfare and Sports and the Ministry of Justice.
Competing interests: None.
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