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Belgian General Practitioners' Perspectives on the Use of Palliative Sedation in End-of-Life Home Care: A Qualitative Study
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Original Article
Belgian General Practitioners’ Perspectives on the Use of Palliative Sedation in End-of-Life Home Care: A Qualitative Study Maria Sercu, MD, Peter Pype, MD, Thierry Christiaens, MD, PhD, Anselme Derese, MD, PhD, and Myriam Deveugele, MA, PhD Department of Family Medicine and Primary Health Care, Ghent University, Ghent, Belgium
Abstract Context. Palliative sedation (PS) is a far-reaching palliative measure with a lifeshortening potential. Guidelines provide only for a restricted use of PS and as a last resort. Objectives. To explore PS practice in end-of-life (EoL) home care. Methods. This was a qualitative analysis of semi-structured interviews with 52 general practitioners (GPs) of Flanders, Belgium. Results. Apart from GPs who adhere to the existing prerequisites for PS, opinions diverge among GPs on the indication area for PS and on possible lifeshortening intentions. The key to GPs’ broadened view on ‘‘which suffering merits PS’’ is the fragile context of EoL home care, and the key to GPs’ possible lifeshortening intentions is their need to facilitate the dying process, when trying or lengthy. When honoring a terminally ill patient’s request for euthanasia, several GPs prefer slow euthanasia using PS to a lethal injection. Conclusion. PS home practice deviates from the PS guidelines’ recommendations. In addition to the GPs’ shortage of knowledge, the guidelines’ recommendations do not always meet the particular needs of EoL home care. If one consideration of EoL home care is to respect a patient’s wish to die at home, then the pre-emptive use of PS to avoid a futile transfer to the hospital in the case of an undesirable turn of events deserves more attention in the PS debate. J Pain Symptom Manage 2013;-:-e-. Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words General practitioner, end-of-life care, home care, sedation, continuous deep sedation, sedation to unconsciousness, terminal care, practice guideline, decision making
Introduction Address correspondence to: Maria Sercu, MD, Department of Family Medicine and Primary Health Care, Ghent University, University Hospital 6K3, De Pintelaan 185, 9000 Ghent, Belgium. E-mail: [email protected] Accepted for publication: July 7, 2013. Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Purposely reducing a patient’s consciousness through sedatives to relieve unmanageable suffering is an accepted component of end-of-life (EoL) care worldwide. This practice has been referred to by various terms, 0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2013.06.016
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including terminal sedation, sedation for intractable distress in the dying, sedation to unconsciousness, etc. Since 2006, it has been commonly referred to as palliative sedation (PS).1 PS offers a large degree of therapeutic flexibility and can be classified into different stages (light/deep/intermittent/continuous sedation until death) that may gradually overlap one another. In this article, the term PS refers to the stage of continuous PS until death. Continuous PS until death, which is most frequently used, is especially debated: first, because of the aim of diminishing the patient’s consciousness until death, and second, because of its potential for shortening life. An unconscious patient cannot drink and, therefore, may sooner die of dehydration than of the underlying disease.2 In addition, inappropriately high doses of hypnotics could directly hasten death. Therefore, there are ethical concerns that PS practice is open to misuse and may be used as ‘‘hidden’’ euthanasia, even in countries where euthanasia has been legalized. Existing PS guidelines3e6 only allow restricted PS use, as a last resort, and share the following prerequisites: only 1) when death is imminent, in most guidelines defined as expected within a few hours up to two weeks; 2) when the patient is suffering unbearably from refractory (physical/existential) symptoms; 3) when consent is given by the patient or, if he/ she is unable to do so, by proxy, except in the case of an EoL emergency; 4) when specific hypnotics/narcotics are used in dosages adjusted to render the specific grave suffering tolerable to the patient and no further; and 5) without any intention to end life. Most guidelines do not encourage artificial hydration or nutrition, viewing this as a treatment option that involves separate choices. Guidelines define refractoriness as: ‘‘if conventional treatments are insufficiently effective or do not act fast enough or cause unacceptable side effects’’ and recommend that a state of refractoriness should be determined by a multidisciplinary team.3e6 In 2002, Belgium legalized euthanasia (intentional life-ending by a physician on a patient’s request) under certain conditions. In 2002, Belgian law also made palliative care a right for all patients. Specialist palliative care services are well developed and include mobile home care teams, teams operating in nursing homes,
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hospitals, and inpatient palliative care units. Many Belgian patients who have been cared for at home in the last months of their lives prefer to die at home as well. Many general practitioners (GPs), therefore, are involved in palliative home care, in close cooperation with family carers, home care nurses, and geriatric caregivers. For advice, such as setting up PS, they can rely on the mobile palliative home care teams. We present the results of a study on PS practice in EoL home care in Belgium (the Dutchspeaking region). The aims of our study were to determine: 1) What is the GPs’ understanding of PS? 2) What are GPs’ views on the indication range and the life-shortening potential of PS? 3) What are GPs’ opinions on PS use as an alternative to lawful euthanasia?
Methods This study was part of a large qualitative survey, studying interaction and decision processes of the patient, his carers, and his GP in EoL home settings. Patients, their families and friends, and GPs were recruited based on the GPs’ registration of the patient as terminally ill with the Health Insurance Fund to apply for an allowance for EoL home care. Fifty-two participating GPs were interviewed in depth by the first author. The following themes were broached: issues surrounding EoL practice, including intensifying analgesics, PS and euthanasia, personal resilience and decision making in EoL home care, estimated medical knowledge on EoL practices, and communication styles with terminally ill patients and their relatives. In some cases, not all topics were discussed or the interviews were ended prematurely because of practice-related matters (e.g., start of consultation). PS was brought into focus because GP broached the subject or because the interviewer asked whether GP had ever considered PS. If required, the following descriptive definition was given: ‘‘the application of sedating drugs, on top of the patient’s pain medication, to put the patient into a kind of sleep until death.’’ GP’s readiness to perform euthanasia has been described elsewhere.7 Only data that are needed to understand how GPs feel about PS as an alternative to euthanasia are mentioned here. Also GPs’ attitudes toward
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intensifying opioids and other symptomalleviating medication, as far as they considered it to be the same as PS, are taken into account.
Qualitative Design This study used thematic analysis of semistructured interviews. All interviews were audiotaped, transcribed verbatim, and analyzed. A coding frame was constructed by two independent coders (the first author and A.C., research assistant). Statements, feelings, and narratives were categorized into expected and newly added topics by the same two coders, with the qualitative data analysis package NVIVO 8 (QSR International (UK) Ltd, Cheshire, U.K.). Oversight was provided through regular meetings with P. P., T. C., and M. D. The Ethics Committee of the University Hospital of Ghent University approved the study (EC Project No: 2007/084. Belgian Registration No: B67020071901).
Results Characteristics of GPs Of the 52 participating GPs, 37 were male. The average age was 51 years, ranging from 29 to 82 years. On average, GPs had been practicing for 26 years (range 4e57 years). They treated 3.2 terminal patients on average per year (range 0.5e12.5). Nearly all interviewees had worked with palliative home care teams at least once. Twenty-two GPs described themselves as adherents of the Roman Catholic faith, 14 saw themselves as adhering to Christian human values, 16 claimed not to be religious in any way.
GPs’ Understanding of PS In some cases, GP’s opinion on PS was missing or too vague to draw conclusions. A minority of GPs did not know what PS entails. The majority was aware that PS is about purposely reducing the patient’s consciousness when in grave distress near death. More than half of the GPs had used PS in EoL home care. Several GPs induce it by generously intensifying morphine, on its own or combined with sedatives and other symptom-alleviating medication, via an oral or intramuscular route. Nearly half apply PS by subcutaneous infusion
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of hypnotics (mainly midazolam) with a syringe driver, mostly when assisted by the palliative home care team. GPs’ views on the indications for PS and possible life-shortening intentions diverged, irrespective of their religious or pluralistic convictions. For some of the GPs, PS use is reserved for pure palliation. For others, it also is a means to facilitate the dying process. Some of the GPs see PS as an alternative to euthanasia. . I like working with the palliative home care teams! I am getting excellent help there. For instance, I didn’t know that midazolam could go into a syringe driver, . I thought that was only for morphine[.]. I have had someone like that, in a lot of pain. With just morphine nothing . an old man, mind. Then they gave midazolam. And that went perfectly. After a couple of hours, that man had died. And the family was very pleased . because the man was in terrible pain. (GP 3, male, aged 59)
Applying PS in the Fragile Context of EoL Home Care Two meaningful episodes determine the patient’s final phase: the last weeks of life and the actual dying phase, the latter being a critical period of 24 hours up to one week where the transition from life to death unfolds. Practically all GPs’ narratives on PS elaborated on this dying phase. Only a few narratives mentioned the necessity to apply PS before the patient is moribund, indicating GP’s opinion that grave suffering and palliative urgencies are not strictly reserved for the dying phase. As a whole, the narratives revealed a high level of commitment of GPs to patients and their relatives. GPs were well aware of working within a home context, which is, although preferable, a more vulnerable one than a hospital or nursing home setting. GP’s PS decisionmaking process was mostly determined by the desire to appease the patient, while taking the family carers’ stamina into account and to avoid futile (re)-admissions in the hospital. . in a nursing home, where you have facilities, terminal care is easy. At home . it’s not always feasible for the entourage, eh. But if the children want to talk it through with me . in some families it works
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perfectly! And then it’s just palliative care, eh: pain treatment, sedation. Because people are most sensitive to that: ‘‘Doctor, he seems to be in pain’’; then you have to do something. But if you can alleviate that, then one can coach lots of people at home. But you have to have a number of people, eh. (GP 34, male, aged 59) . when we know the end is near, then it’s a question of ensuring that [the patient] certainly doesn’t suffer. So, often that means: morphine to facilitate the breathing and to render the patient calm and quiet and then mostly it ends relatively quickly . Because if it takes too long, then it’s annoying. Then you’re in trouble . I have seen it happen that patients changed GPs because the previous GP had let the patient suffer and it took far too long. (GP 14, male, aged 50) Communication seems to be a major prerequisite for successful EoL home care. Nearly all interviewees involved their patients and/or proxies at the moment that EoL decisions, including PS, were made. Only a few older GPs felt they could one-sidedly decide that ‘‘this patient had had enough.’’ . once you and the patient have decided that the [life] story is over, then you have to choose for comfort I think, I mean: palliative sedation. Then you must let them doze off [.]. But the story must be over and it must be talked through; if it isn’t talked through, I can’t do [PS], eh. (GP 29, male, aged 42) . I have let few people suffer at home in their terminal phase[.] If I consider myself, with my own conscience, my own philosophy anddknowing the patientdto be in agreement with him, to give him a nice big shot [of morphine]. I know that that isn’t going to prolong his life, eh. (GP 15, male, aged 59) Advance planning on EoL decisions also took place, mostly in the later phases of illness and when the demand or necessity to broach it came up. . I make it my business to explain, when questioned on end-of-life care, that active euthanasia exists. And that it is possible. But that there is also palliative sedation for example [.]. But if a patient has maybe
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another two years to live, then I’m not going to bring it up. But recently I spoke to someone about it some three months before she died. It was a relief to her, knowing that ‘‘this is how it goes’’; that there are different possibilities and that she could die in a humane way. (GP 11, male, aged 53)
GPs’ Perspectives on the Indication Range of PS In general, we found a broadened view on the nature of suffering that renders a patient eligible for PS. Some interviewees abide by the restriction of unbearable suffering from refractory symptoms. Others extend PS use to difficult-to-treat symptoms, to avoid a bitter dying process and to help a death along in the most peaceful way. . palliative sedation, that is when someone is in an awful lot of pain and he cannot find any comfort. And [if] you know that he’s untreatable, that there is no other way any longer to ease the pain, then you can do that. (GP 31, female, aged 54) Interviewer: Have you ever considered PS, when the pain got too bad? GP: Oh, I think that you get there quite quickly; mostly you end up with a sedation anyway, eh. (GP 35, male, aged 46) Indications for PS also can be contextrelated, such as the wish of the terminally ill patient to die at home. PS, next to being an emergency aid, has been pre-emptively used to avoid a futile transfer to hospital in case of an undesirable turn of events. . Sometimes you have to take decisions that are not pleasant! An acute intestinal obstruction with immense pain in the end . a patient with the very wish to die at home, you have no choice eh! You go to the hospital with [the patient] or you do palliative sedation; if you have promised something, you do it eh. (GP 55, female, aged 36)
GPs’ Perspectives on the Level of Sedation When patients are close to death, carefully titrated doses, administered only as much as needed to relieve specific suffering, often seems to lose its medical importance. Creating
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a state of peace and sleep seems to become the goal. GPs seem less concerned that a certain dose could unintentionally hasten death. The value of offering comfort may take priority over the need to secure the patient’s survival. . I wouldn’t be afraid of doing anything wrong which would cause them to die earlier. It’s not as if you want those people to die as quickly as possible. At that moment, that’s actually not important any longer. Keeping the patient free of complaints and ensuring support for the family should be the main concern! .Because the patient’s partner dies a little bit along, eh. (GP 40, female, aged 39) . PS leans towards the viewpoint: ‘‘I am not killing anybody. I’m helping somebody,’’ out of pity that it’s been enough now, right, for this person. Nowadays you can ease all pain, with the reverse effect of pain killers that you die sooner. But, I can’t help that [.]. At home with a terminal patient, I can feel myself so at ease because I don’t have to think about exceeding maximum doses. I have only one goal at that moment: help this person. Whereas I don’t have to worry about undesired side effects that won’t be good for him later . (GP 17, male, aged 59)
GPs’ Death-Facilitating Intentions When it comes to intentionally influencing the time of death, we found different perspectives. First, GPs value the final stage of life differently: from rich and valuable over strained and exhausting to disgraceful and demeaning. . In my opinion, terminal phases can be beautiful as well. [.] it can often have a surplus-value . (GP 55, female, aged 36) . At the very end, this agony phase, these last five days can be so moving for everyone, so exhausting . (GP 31, female, aged 54) . Palliation! Everything they say is all fine, but I haven’t often come across a ‘‘clean’’ final stage! . (GP 53, male, aged 53) GPs also assessed the principle of enduring the dying process differently: should a human being ‘‘sit out’’ the death throes or not? One GP was able to let the dying process take its natural course. Another GP found it hard having to witness the process without
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intervention, especially if the exhausted patient/family requests to speed up the dying process. Some GPs revealed that they sometimes would have liked to intervene but were unable because of possible legal consequences; or they would intervene anyway, when confronted with a trying or lengthy dying process. . That question always came up: ‘‘Is it going to take long?’’ I say: ‘‘It depends on his heart, but we will let nature take its course.’’ ‘‘Even if it takes a week,’’ she says. But should the question occur: ‘‘Speed it up a little,’’ then you are in that grey thingy, eh. I don’t know what I would have done had she asked me that Friday: ‘‘Cannot it be done faster?’’ (GP 51, male, aged 38) . if it’s really at the end, and some acute event happens, then I will jack up the morphine pump. Then, in a matter of speaking, I would actively ensure that this life is shortened, but not via active euthanasia, huh. I also tell the family: ‘‘Going to the hospital now is useless.’’ Indeed, I leave them at home but in utter comfort. So: a maximum dose of morphine or sedation and then slowly [letting them die] . (GP 24, male, aged 56)
PS as an Alternative to a Life-Ending Injection Following a Patient’s Euthanasia Request Several GPs mentioned that they saw PS applied as an alternative to euthanasia in the hospital. As to whether they would use PS themselves this way, GPs’ opinions differed. Some clearly distinguished PS, used to address symptoms, from euthanasia with a lethal injection. Others would, in the case of a euthanasia request, put the PS procedure forward because they find an injection or the farewell too abrupt. Patients or relatives also may prefer PS for the same reasons. . PS? I already came across that with a patient with ovary cancer in the hospital of X. She explicitly requested euthanasia. And then they said in X: ‘‘We don’t want to do that here, but PS, yes.’’ And that was done there. They just jacked up the morphine and midazolam, I guess . (GP 6, male, aged 47) . PS is a much more humane way. Yes, I try to convince patients to go for this! I feel:
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euthanize, if there really is no other way. I feel the patient has the right to die if nature doesn’t follow. But a PS, for me as a doctor, is much more acceptable. And towards the relatives for instance; they do not fully comprehend what [injecting someone to death] involves. To see someone lying there, ah. (GP 11, male, aged 55) . He first asked for euthanasia. He had put in a request . there was not that much pain; especially the meaninglessness of it all, he didn’t like that. But then came the reaction of the relatives: especially the children, eighteen and sixteen years old, they said ‘‘No, we want to go on for a while,’’ in such a way that he felt guilty, like: ‘‘I give up too quickly.’’ But he was quickly won over, and the relatives too, to PS. We started that Friday. (GP 45, male, aged 59) Some narratives reveal the legal confusion when converting euthanasia requests into PS and vice versa. GP: If you use the technique of PS for euthanasia, then that can be important because the fact of saying goodbye and see someone slip off in your hands is a totally different feeling than ‘‘I inject and two minutes later it’s finished,’’ huh [.]. But it remains euthanasia; and you have to report it as well, I think [.] Interviewer: Does it bother you that some physicians bypass the judicial euthanasia procedure via PS? GP: [it bothers me] that those physicians tell the patient: ‘‘We will take a natural course’’ and that they don’t do this at all, but that they use [PS] concealing from others and most likely also from themselves that they are actually euthanizing. (GP 36, male, aged 53)
Discussion Existing PS guidelines are widely accepted. However, empirical research on daily PS practice and on the applicability of the guidelines in different EoL care settings (home/hospital/palliative care unit) is scarce.8 In this qualitative study, we scrutinized the perspectives of 52 Belgian GPs on PS. We can corroborate the findings of Anquinet et al.9 that PS home
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practice diverges from the guidelines’ recommendations. Our study brings deeper insights into GPs’ motives. In addition to interviewees who abide by the prerequisites for PS, we have come across broadened moral and clinical opinions. First, the nature of suffering that is regarded as appropriate for reducing consciousness is extended from refractory symptoms to grave discomfort and difficult situations. Second, the impermissibility of life-shortening intentions is in debate: for several GPs, the issue of having to fully endure the dying process is under scrutiny. Third, the pre-emptive use of PS to avoid a futile transfer to the hospital in case of an undesirable turn of events arose. Last, some of the GPs regard PS as a relevant alternative to lawful euthanasia. These findings were irrespective of the GPs’ religious or pluralistic convictions. One explanation for our findings is that in Belgium in 2008, at the time when the interviews were done, no general PS guidelines had been developed, apart from some local circulating protocols and palliative home care teams’ expertise. However, these aberrations have also partly been described in the international literature.10,11 We conclude that there is more to it than a shortage of knowledge of the guidelines or a willful misuse by GPs.
PS Application Methods Diverge Some of the interviewees apply PS by deliberately intensifying morphine administration, on its own or combined with sedatives and other medications. This is viewed as substandard PS practice according to the guidelines, although PS is perceived and used in this way worldwide.12 Especially when the palliative home care team is involved, PS is applied in the recommended way: infusion of specific hypnotics (on top of the patient’s pain medication). Applying PS like this is quite different from ‘‘turning up the tap,’’ which could be prone to impulsiveness. Palliative home care teams, therefore, can play a crucial role in coaching GPs toward a more refined PS practice.13 This also meets the PS guidelines’ recommendation regarding expert consultation before deciding to apply PS.
Broadened View on the Indication Range of PS The fragility of EoL home care is the key factor. One vulnerable aspect is the context of
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support: the patient’s permanent entourage is made up of devoted, yet often inexperienced or fearful relatives, and professional caregivers are not continuously available as is the case in a hospital or nursing home. This could enhance the relatives’ sense of insecurity and lead to decompensation. Another aspect is the limited access to technical diagnostics and therapeutics, needed to adequately tackle the cause of grave discomfort. This reality sharply contrasts with, for example, the European Association for Palliative Care PS guideline’s insistence on thorough investigations to discern untreatable suffering.3 Briefly, in EoL home care, the symptoms or situations may be more readily considered refractory than in hospital, and the ‘‘escape route’’ of hospitalization is often considered undesirable. Hence, the basis for the GPs’ broadened view on the indication range for PS is multifactorial; in addition to focusing on difficult-to-treat symptoms, decision making is co-determined by the desire to appease the dying patient while taking the family carers’ stamina into account anddan important motivedto avoid futile transfers to the hospital. The particular vulnerability of EoL home care also has surfaced in other studies. Ventafridda et al.14 stipulated that, in labeling 52% of 120 terminal cancer patients who were cared for at home as eligible for PS, they did not consider the possibility of hospitalization as an option for patients with unendurable symptoms. Barbera et al.15 found that in 8.4% of the visits by patients to emergency departments in the final two weeks of life, decompensation of the relatives was involved. Even within a group of determined GPs who delivered good palliative care, including consultation with the palliative home care teams, Meeussen et al.16 still found 18% of hospital admissions during the patients’ final weeks of life. If one important consideration of EoL home care is to respect the patient’s wish to die at home, then the pre-emptive use of PS to avoid a futile transfer to the hospital in case of an undesirable turn of events deserves more attention in the PS debate.
GPs’ Views on the Notion of Proportionality PS guidelines state that reducing a patient’s consciousness is not justified for less than
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refractory suffering and dosages of sedatives should be strictly titrated to what is needed to relieve the specific suffering. GPs, however, felt that, once the patient was diagnosed as dying and death was no longer to be avoided, this all seems to lose its medical urgency. GPs seem more intent on creating a state of calm and peace and are less concerned that a certain dose could unintentionally hasten death. The guidelines’ strict viewpoint also has been criticized in the literature. Berger17 wondered why a patient’s wish to die in an artificial sleep should only be permitted in cases beyond hope, especially as PS does not shorten life when applied in a patient’s final days. Miccinesi et al.18 found that 63% of 88 terminally ill patients interviewed would prefer to die in a drug-induced state of unconsciousness. Swart et al.11 found that the GPs’ preference for deep PS right from the start is prompted by the wish of the patient and family alike to avoid any chance of awakening, all the more because the alternative of constantly adjusting dosages is much more difficult to remedy at home than in a hospital. According to this study, GPs are more inclined to take the wishes and aspirations of patients and caregivers into consideration.11
GPs’ Possible (Co-)Intention to Quicken the Dying Process The need to facilitate the dying process has been mentioned, especially when confronted with a trying or lengthy deathbed situation. Our study reveals that several GPs question the value of a bitter dying process and of having to fully endure this inevitable transition from life to death. They want to shorten the length of the patient’s futile suffering. (Co-)intentional hastening of death when applying PS has been documented, also in countries without euthanasia legislation.10,12 In-depth research on this controversial practice is extremely scarce but confirms the profile of compassionate PS for deserving cases.19 ‘‘Thou shalt not kill’’ is paramount in ethical thinking and violations of this tenet trigger highly emotional reactions within society. Dying, however, remains a formidable threshold that all of us wish to take place as serenely as possible. This can result in a reversal of value hierarchies. The issue as to whether facilitating death should be considered unjustifiable in
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all EoL circumstances remains a point of intense debate among medical ethicists and the medical profession worldwide.20 Empirical research into value conflicts near death and especially the importance of having to endure the suffering phase is not available. But physicians and family and friends around the deathbed should at least be aware of these competing values. This could benefit mutual communication and subsequent behavioral patterns.
Using the Technique of PS as an Alternative to Lawful Euthanasia Because legalization of euthanasia raises the general acceptability of euthanasia among physicians and their overall willingness to perform it,21 one would expect that PS use as hidden euthanasia would hardly occur in countries where euthanasia has been legalized. Our previous study on Belgian GPs’ readiness to perform euthanasia revealed that most interviewees had qualms about giving a lethal injection and that several GPs preferred slow euthanasia via PS.7 In fact, the Belgian euthanasia law does not exclude slow euthanasia on the condition that it complies with all legal requirements and procedures.22 For a long time, however, there has been a connotation of euthanasia being limited to a life-ending injection. First, effecting a quick death via barbiturates and neuromuscular relaxants is said to offer the best guarantee for a gentle death. Dying through slow euthanasia could take hours to days and could be very demanding on the proxies.23 In itself, this is a strange argument when we know that enduring the dying process is the norm in regular terminal care. Second, there is the prevailing conviction that a technically visible demarcation between euthanasia and palliation methods is needed; hence, the tendency to favor fast euthanasia and to reserve PS strictly for palliation. Our study shows that there are GPs, patients, and family carers who do not share this opinion. They would, in the case of a euthanasia request, go through the mise-en-sc ene of the deathbed, as it leads to a more natural and less abrupt farewell.24 To complicate things further, there are several EoL situations where all legal and moral requirements for performing both PS and euthanasia are met and where it is the context that will determine which method will be chosen. For example: does the patient want to pass
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away slowly but painlessly or is there a wish to end it quickly? Does the physician impose his own preference for PS? Are family circumstances the determining factor? This could explain why euthanasia requests in the last phase of life are often converted into PS. The key question remains whether applying PS should then be considered as lawful euthanasia or not. To gain insight into the circumstances and number of PS-related slow euthanasia cases, we propose a form of registration of all PS treatments.
Limitations The study does not guarantee to present a representative sample of GPs. However, the fact that recruitment was based on GPs’ registration of a patient as terminally ill with the Health Insurance Fund and not on their personal opinions on PS or euthanasia ensures that the study represents different opinions present in the Flemish GP community. In addition, by interviewing GPs of different ages, life views, locations, and experiences with EoL decisions, this study meets the requirements of a qualitative investigation. Belgian GPs work in an environment where euthanasia has been legalized; our results, therefore, probably cannot be generalized to countries without legalized euthanasia.
Conclusion PS is a powerful tool in the GPs’ palliative care arsenal that needs solid criteria for good practice. However, the existing PS recommendations do not always meet the particular needs of EoL home care, where refractoriness is considered in a much broader context than just symptom based. If one consideration of EoL home care is to avoid the hospitalization of dying people who wish to stay at home, then we think that pre-emptive PS use deserves more attention. As mentioned, we propose a form of registration of all PS treatments to gain insight into the circumstances and number of PS-related slow euthanasia cases.
Disclosures and Acknowledgments This study was supported by a research grant from The Flemish League Against Cancer. The
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authors have no financial or other conflicts of interest to report. The authors thank all 52 GPs for their contributions to this study and for sharing their experiences, opinions, and fears so open with them. The authors also thank Mayke Hundhausen and Ann Cardinael for providing assistance in the transcription and coding of the interviews and Greet Vandenbussche for translating the quoted material into English. The original Dutch-language responses are available on request.
References 1. Hasselaar JG, Verhagen SC, Vissers KC. When cancer symptoms cannot be controlled: the role of palliative sedation. Curr Opin Support Palliat Care 2009;3:14e23. 2. Orentlicher D. The Supreme Court and physician-assisted suicide: rejecting assisted suicide but embracing euthanasia. N Engl J Med 1997; 337:1236e1239. 3. Cherny NI, Radbruch L. Board of the European Association for Palliative Care. European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Palliat Med 2009;23:581e593. 4. Committee on National Guideline for Palliative Sedation. Royal Dutch Medical Association. Guideline for palliative sedation. [in English]. 2009. Available from http://knmg.artsennet.nl/Publicaties/KNMG publicatie/Guideline-for-palliative-sedation-2009.htm. Accessed November 29, 2012. 5. Levine MA. CEJA Report 5-A-08. Sedation to unconsciousness in end-of-life care. 2008. Available from http://www.ama-assn.org/resources/doc/ ethics/ceja_3a05.pdf. Accessed November 29, 2012.
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of continuous deep sedation until death for patients dying at home: a descriptive study from Belgium. Eur J Gen Pract 2011;17:5e13. 10. Rietjens JA, van der Heide A, Vrakking AM, et al. Physician reports of terminal sedation without hydration or nutrition for patients nearing death in the Netherlands. Ann Intern Med 2004;141: 178e185. 11. Swart SJ, van der Heide A, van Zuylen L, et al. Considerations of physicians about the depth of palliative sedation at the end of life. CMAJ 2012;184: E360eE366. 12. Seale C. Continuous deep sedation in medical practice: a descriptive study. J Pain Symptom Manage 2010;39:44e53. 13. Pype P, Stes A, Wens J, Van den Eynden B, Deveugele M. The landscape of postgraduate education in palliative care for general practitioners: results of a nationwide survey in Flanders, Belgium. Patient Educ Couns 2012;86:220e225. 14. Ventafridda V, Ripamonti C, De Conno F, Tamburini M, Cassileth BR. Symptom prevalence and control during cancer patients’ last days of life. J Palliat Care 1990;6:7e11. 15. Barbera L, Taylor C, Dudgeon D. Why do patients with cancer visit the emergency department near the end of life. CMAJ 2010;182:563e568. 16. Meeussen K, Van den Block L, Bossuyt N, et al. GPs’ awareness of patients’ preference for place of death. Br J Gen Pract 2009;59:665e670. 17. Berger JT. Rethinking guidelines for the use of palliative sedation. Hastings Cent Rep 2010;40: 32e38. 18. Miccinesi G, Bianchi E, Brunelli C, Borreani C. End-of-life preferences in advanced cancer patients willing to discuss issues surrounding their terminal condition. Eur J Cancer Care 2012;21:623e633.
6. Federatie Palliatieve Zorg Vlaanderen. Federation for Palliative Care Flanders. Palliative Sedation 2010 [in Dutch] Palliatieve sedatie. 2010. Available from http://www.pallialine.be/template.asp?f¼rl_ palliatieve_sedatie.htm. Accessed December 1, 2012.
19. Meeussen K, Van den Block L, Bossuyt N, et al. Physician reports of medication use with explicit intention of hastening the end of life in the absence of explicit patient request in general practice in Belgium. BMC Public Health 2010; 10:186.
7. Sercu M, Pype P, Christiaens T, et al. Are general practitioners prepared to end life on request in a country where euthanasia is legalized? J Med Ethics 2012;38:274e280.
20. Sprung CL, Ledoux D, Bulow HH, et al. Relieving suffering or intentionally hastening death: where do you draw the line? Crit Care Med 2008; 36:8e13.
8. Seymour J, Rietjens J, Brown J, et al. The perspectives of clinical staff and bereaved informal care-givers on the use of continuous sedation until death for cancer patients: the study protocol of the UNBIASED study. BMC Palliat Care 2011;10:5.
21. Miccinesi G, Fischer S, Paci E. Physicians’ attitudes towards end-of-life decisions: a comparison between seven countries. Soc Sci Med 2005;60: 1961e1974.
9. Anquinet L, Rietjens JA, Van den Block L, Bossuyt N, Deliens L. General practitioners’ report
22. Federale Controleden Evaluatiecommissie Euthanasie. Informatiebrochure artsen_14088502_nl. pdf. Federal Control and Evaluation Committee on Euthanasia. Information brochure for
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physicians_14088502_Dutch. Available from http:// www.health.belgium.be/eportal/Healthcare/Consul tativebodies/Commissions/Euthanasia/Publications/ 9794449?ie2Term¼euthanasie&ie2section¼83. Accessed December 1, 2012.
Vereniging voor een Vrijwillig Levenseinde). 1980. Warranted euthanasia, a manual for physicians. Dutch Organisation Right to Die. 1980. Available from www.nvve.nl/. Accessed December 1, 2012.
23. Admiraal PV. Verantwoorde euthanasie, handleiding voor artsen. Nederlandse Vereniging voor Vrijwillige Euthanasie (thans Nederlandse
24. Raus K, Sterckx S, Mortier F. Continuous deep sedation at the end of life and the ‘natural death’ hypothesis. Bioethics 2012;26:329e336.
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Original Article
Belgian General Practitioners’ Perspectives on the Use of Palliative Sedation in End-of-Life Home Care: A Qualitative Study Maria Sercu, MD, Peter Pype, MD, Thierry Christiaens, MD, PhD, Anselme Derese, MD, PhD, and Myriam Deveugele, MA, PhD Department of Family Medicine and Primary Health Care, Ghent University, Ghent, Belgium
Abstract Context. Palliative sedation (PS) is a far-reaching palliative measure with a lifeshortening potential. Guidelines provide only for a restricted use of PS and as a last resort. Objectives. To explore PS practice in end-of-life (EoL) home care. Methods. This was a qualitative analysis of semi-structured interviews with 52 general practitioners (GPs) of Flanders, Belgium. Results. Apart from GPs who adhere to the existing prerequisites for PS, opinions diverge among GPs on the indication area for PS and on possible lifeshortening intentions. The key to GPs’ broadened view on ‘‘which suffering merits PS’’ is the fragile context of EoL home care, and the key to GPs’ possible lifeshortening intentions is their need to facilitate the dying process, when trying or lengthy. When honoring a terminally ill patient’s request for euthanasia, several GPs prefer slow euthanasia using PS to a lethal injection. Conclusion. PS home practice deviates from the PS guidelines’ recommendations. In addition to the GPs’ shortage of knowledge, the guidelines’ recommendations do not always meet the particular needs of EoL home care. If one consideration of EoL home care is to respect a patient’s wish to die at home, then the pre-emptive use of PS to avoid a futile transfer to the hospital in the case of an undesirable turn of events deserves more attention in the PS debate. J Pain Symptom Manage 2013;-:-e-. Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words General practitioner, end-of-life care, home care, sedation, continuous deep sedation, sedation to unconsciousness, terminal care, practice guideline, decision making
Introduction Address correspondence to: Maria Sercu, MD, Department of Family Medicine and Primary Health Care, Ghent University, University Hospital 6K3, De Pintelaan 185, 9000 Ghent, Belgium. E-mail: [email protected] Accepted for publication: July 7, 2013. Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Purposely reducing a patient’s consciousness through sedatives to relieve unmanageable suffering is an accepted component of end-of-life (EoL) care worldwide. This practice has been referred to by various terms, 0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2013.06.016
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including terminal sedation, sedation for intractable distress in the dying, sedation to unconsciousness, etc. Since 2006, it has been commonly referred to as palliative sedation (PS).1 PS offers a large degree of therapeutic flexibility and can be classified into different stages (light/deep/intermittent/continuous sedation until death) that may gradually overlap one another. In this article, the term PS refers to the stage of continuous PS until death. Continuous PS until death, which is most frequently used, is especially debated: first, because of the aim of diminishing the patient’s consciousness until death, and second, because of its potential for shortening life. An unconscious patient cannot drink and, therefore, may sooner die of dehydration than of the underlying disease.2 In addition, inappropriately high doses of hypnotics could directly hasten death. Therefore, there are ethical concerns that PS practice is open to misuse and may be used as ‘‘hidden’’ euthanasia, even in countries where euthanasia has been legalized. Existing PS guidelines3e6 only allow restricted PS use, as a last resort, and share the following prerequisites: only 1) when death is imminent, in most guidelines defined as expected within a few hours up to two weeks; 2) when the patient is suffering unbearably from refractory (physical/existential) symptoms; 3) when consent is given by the patient or, if he/ she is unable to do so, by proxy, except in the case of an EoL emergency; 4) when specific hypnotics/narcotics are used in dosages adjusted to render the specific grave suffering tolerable to the patient and no further; and 5) without any intention to end life. Most guidelines do not encourage artificial hydration or nutrition, viewing this as a treatment option that involves separate choices. Guidelines define refractoriness as: ‘‘if conventional treatments are insufficiently effective or do not act fast enough or cause unacceptable side effects’’ and recommend that a state of refractoriness should be determined by a multidisciplinary team.3e6 In 2002, Belgium legalized euthanasia (intentional life-ending by a physician on a patient’s request) under certain conditions. In 2002, Belgian law also made palliative care a right for all patients. Specialist palliative care services are well developed and include mobile home care teams, teams operating in nursing homes,
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hospitals, and inpatient palliative care units. Many Belgian patients who have been cared for at home in the last months of their lives prefer to die at home as well. Many general practitioners (GPs), therefore, are involved in palliative home care, in close cooperation with family carers, home care nurses, and geriatric caregivers. For advice, such as setting up PS, they can rely on the mobile palliative home care teams. We present the results of a study on PS practice in EoL home care in Belgium (the Dutchspeaking region). The aims of our study were to determine: 1) What is the GPs’ understanding of PS? 2) What are GPs’ views on the indication range and the life-shortening potential of PS? 3) What are GPs’ opinions on PS use as an alternative to lawful euthanasia?
Methods This study was part of a large qualitative survey, studying interaction and decision processes of the patient, his carers, and his GP in EoL home settings. Patients, their families and friends, and GPs were recruited based on the GPs’ registration of the patient as terminally ill with the Health Insurance Fund to apply for an allowance for EoL home care. Fifty-two participating GPs were interviewed in depth by the first author. The following themes were broached: issues surrounding EoL practice, including intensifying analgesics, PS and euthanasia, personal resilience and decision making in EoL home care, estimated medical knowledge on EoL practices, and communication styles with terminally ill patients and their relatives. In some cases, not all topics were discussed or the interviews were ended prematurely because of practice-related matters (e.g., start of consultation). PS was brought into focus because GP broached the subject or because the interviewer asked whether GP had ever considered PS. If required, the following descriptive definition was given: ‘‘the application of sedating drugs, on top of the patient’s pain medication, to put the patient into a kind of sleep until death.’’ GP’s readiness to perform euthanasia has been described elsewhere.7 Only data that are needed to understand how GPs feel about PS as an alternative to euthanasia are mentioned here. Also GPs’ attitudes toward
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intensifying opioids and other symptomalleviating medication, as far as they considered it to be the same as PS, are taken into account.
Qualitative Design This study used thematic analysis of semistructured interviews. All interviews were audiotaped, transcribed verbatim, and analyzed. A coding frame was constructed by two independent coders (the first author and A.C., research assistant). Statements, feelings, and narratives were categorized into expected and newly added topics by the same two coders, with the qualitative data analysis package NVIVO 8 (QSR International (UK) Ltd, Cheshire, U.K.). Oversight was provided through regular meetings with P. P., T. C., and M. D. The Ethics Committee of the University Hospital of Ghent University approved the study (EC Project No: 2007/084. Belgian Registration No: B67020071901).
Results Characteristics of GPs Of the 52 participating GPs, 37 were male. The average age was 51 years, ranging from 29 to 82 years. On average, GPs had been practicing for 26 years (range 4e57 years). They treated 3.2 terminal patients on average per year (range 0.5e12.5). Nearly all interviewees had worked with palliative home care teams at least once. Twenty-two GPs described themselves as adherents of the Roman Catholic faith, 14 saw themselves as adhering to Christian human values, 16 claimed not to be religious in any way.
GPs’ Understanding of PS In some cases, GP’s opinion on PS was missing or too vague to draw conclusions. A minority of GPs did not know what PS entails. The majority was aware that PS is about purposely reducing the patient’s consciousness when in grave distress near death. More than half of the GPs had used PS in EoL home care. Several GPs induce it by generously intensifying morphine, on its own or combined with sedatives and other symptom-alleviating medication, via an oral or intramuscular route. Nearly half apply PS by subcutaneous infusion
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of hypnotics (mainly midazolam) with a syringe driver, mostly when assisted by the palliative home care team. GPs’ views on the indications for PS and possible life-shortening intentions diverged, irrespective of their religious or pluralistic convictions. For some of the GPs, PS use is reserved for pure palliation. For others, it also is a means to facilitate the dying process. Some of the GPs see PS as an alternative to euthanasia. . I like working with the palliative home care teams! I am getting excellent help there. For instance, I didn’t know that midazolam could go into a syringe driver, . I thought that was only for morphine[.]. I have had someone like that, in a lot of pain. With just morphine nothing . an old man, mind. Then they gave midazolam. And that went perfectly. After a couple of hours, that man had died. And the family was very pleased . because the man was in terrible pain. (GP 3, male, aged 59)
Applying PS in the Fragile Context of EoL Home Care Two meaningful episodes determine the patient’s final phase: the last weeks of life and the actual dying phase, the latter being a critical period of 24 hours up to one week where the transition from life to death unfolds. Practically all GPs’ narratives on PS elaborated on this dying phase. Only a few narratives mentioned the necessity to apply PS before the patient is moribund, indicating GP’s opinion that grave suffering and palliative urgencies are not strictly reserved for the dying phase. As a whole, the narratives revealed a high level of commitment of GPs to patients and their relatives. GPs were well aware of working within a home context, which is, although preferable, a more vulnerable one than a hospital or nursing home setting. GP’s PS decisionmaking process was mostly determined by the desire to appease the patient, while taking the family carers’ stamina into account and to avoid futile (re)-admissions in the hospital. . in a nursing home, where you have facilities, terminal care is easy. At home . it’s not always feasible for the entourage, eh. But if the children want to talk it through with me . in some families it works
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perfectly! And then it’s just palliative care, eh: pain treatment, sedation. Because people are most sensitive to that: ‘‘Doctor, he seems to be in pain’’; then you have to do something. But if you can alleviate that, then one can coach lots of people at home. But you have to have a number of people, eh. (GP 34, male, aged 59) . when we know the end is near, then it’s a question of ensuring that [the patient] certainly doesn’t suffer. So, often that means: morphine to facilitate the breathing and to render the patient calm and quiet and then mostly it ends relatively quickly . Because if it takes too long, then it’s annoying. Then you’re in trouble . I have seen it happen that patients changed GPs because the previous GP had let the patient suffer and it took far too long. (GP 14, male, aged 50) Communication seems to be a major prerequisite for successful EoL home care. Nearly all interviewees involved their patients and/or proxies at the moment that EoL decisions, including PS, were made. Only a few older GPs felt they could one-sidedly decide that ‘‘this patient had had enough.’’ . once you and the patient have decided that the [life] story is over, then you have to choose for comfort I think, I mean: palliative sedation. Then you must let them doze off [.]. But the story must be over and it must be talked through; if it isn’t talked through, I can’t do [PS], eh. (GP 29, male, aged 42) . I have let few people suffer at home in their terminal phase[.] If I consider myself, with my own conscience, my own philosophy anddknowing the patientdto be in agreement with him, to give him a nice big shot [of morphine]. I know that that isn’t going to prolong his life, eh. (GP 15, male, aged 59) Advance planning on EoL decisions also took place, mostly in the later phases of illness and when the demand or necessity to broach it came up. . I make it my business to explain, when questioned on end-of-life care, that active euthanasia exists. And that it is possible. But that there is also palliative sedation for example [.]. But if a patient has maybe
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another two years to live, then I’m not going to bring it up. But recently I spoke to someone about it some three months before she died. It was a relief to her, knowing that ‘‘this is how it goes’’; that there are different possibilities and that she could die in a humane way. (GP 11, male, aged 53)
GPs’ Perspectives on the Indication Range of PS In general, we found a broadened view on the nature of suffering that renders a patient eligible for PS. Some interviewees abide by the restriction of unbearable suffering from refractory symptoms. Others extend PS use to difficult-to-treat symptoms, to avoid a bitter dying process and to help a death along in the most peaceful way. . palliative sedation, that is when someone is in an awful lot of pain and he cannot find any comfort. And [if] you know that he’s untreatable, that there is no other way any longer to ease the pain, then you can do that. (GP 31, female, aged 54) Interviewer: Have you ever considered PS, when the pain got too bad? GP: Oh, I think that you get there quite quickly; mostly you end up with a sedation anyway, eh. (GP 35, male, aged 46) Indications for PS also can be contextrelated, such as the wish of the terminally ill patient to die at home. PS, next to being an emergency aid, has been pre-emptively used to avoid a futile transfer to hospital in case of an undesirable turn of events. . Sometimes you have to take decisions that are not pleasant! An acute intestinal obstruction with immense pain in the end . a patient with the very wish to die at home, you have no choice eh! You go to the hospital with [the patient] or you do palliative sedation; if you have promised something, you do it eh. (GP 55, female, aged 36)
GPs’ Perspectives on the Level of Sedation When patients are close to death, carefully titrated doses, administered only as much as needed to relieve specific suffering, often seems to lose its medical importance. Creating
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a state of peace and sleep seems to become the goal. GPs seem less concerned that a certain dose could unintentionally hasten death. The value of offering comfort may take priority over the need to secure the patient’s survival. . I wouldn’t be afraid of doing anything wrong which would cause them to die earlier. It’s not as if you want those people to die as quickly as possible. At that moment, that’s actually not important any longer. Keeping the patient free of complaints and ensuring support for the family should be the main concern! .Because the patient’s partner dies a little bit along, eh. (GP 40, female, aged 39) . PS leans towards the viewpoint: ‘‘I am not killing anybody. I’m helping somebody,’’ out of pity that it’s been enough now, right, for this person. Nowadays you can ease all pain, with the reverse effect of pain killers that you die sooner. But, I can’t help that [.]. At home with a terminal patient, I can feel myself so at ease because I don’t have to think about exceeding maximum doses. I have only one goal at that moment: help this person. Whereas I don’t have to worry about undesired side effects that won’t be good for him later . (GP 17, male, aged 59)
GPs’ Death-Facilitating Intentions When it comes to intentionally influencing the time of death, we found different perspectives. First, GPs value the final stage of life differently: from rich and valuable over strained and exhausting to disgraceful and demeaning. . In my opinion, terminal phases can be beautiful as well. [.] it can often have a surplus-value . (GP 55, female, aged 36) . At the very end, this agony phase, these last five days can be so moving for everyone, so exhausting . (GP 31, female, aged 54) . Palliation! Everything they say is all fine, but I haven’t often come across a ‘‘clean’’ final stage! . (GP 53, male, aged 53) GPs also assessed the principle of enduring the dying process differently: should a human being ‘‘sit out’’ the death throes or not? One GP was able to let the dying process take its natural course. Another GP found it hard having to witness the process without
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intervention, especially if the exhausted patient/family requests to speed up the dying process. Some GPs revealed that they sometimes would have liked to intervene but were unable because of possible legal consequences; or they would intervene anyway, when confronted with a trying or lengthy dying process. . That question always came up: ‘‘Is it going to take long?’’ I say: ‘‘It depends on his heart, but we will let nature take its course.’’ ‘‘Even if it takes a week,’’ she says. But should the question occur: ‘‘Speed it up a little,’’ then you are in that grey thingy, eh. I don’t know what I would have done had she asked me that Friday: ‘‘Cannot it be done faster?’’ (GP 51, male, aged 38) . if it’s really at the end, and some acute event happens, then I will jack up the morphine pump. Then, in a matter of speaking, I would actively ensure that this life is shortened, but not via active euthanasia, huh. I also tell the family: ‘‘Going to the hospital now is useless.’’ Indeed, I leave them at home but in utter comfort. So: a maximum dose of morphine or sedation and then slowly [letting them die] . (GP 24, male, aged 56)
PS as an Alternative to a Life-Ending Injection Following a Patient’s Euthanasia Request Several GPs mentioned that they saw PS applied as an alternative to euthanasia in the hospital. As to whether they would use PS themselves this way, GPs’ opinions differed. Some clearly distinguished PS, used to address symptoms, from euthanasia with a lethal injection. Others would, in the case of a euthanasia request, put the PS procedure forward because they find an injection or the farewell too abrupt. Patients or relatives also may prefer PS for the same reasons. . PS? I already came across that with a patient with ovary cancer in the hospital of X. She explicitly requested euthanasia. And then they said in X: ‘‘We don’t want to do that here, but PS, yes.’’ And that was done there. They just jacked up the morphine and midazolam, I guess . (GP 6, male, aged 47) . PS is a much more humane way. Yes, I try to convince patients to go for this! I feel:
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euthanize, if there really is no other way. I feel the patient has the right to die if nature doesn’t follow. But a PS, for me as a doctor, is much more acceptable. And towards the relatives for instance; they do not fully comprehend what [injecting someone to death] involves. To see someone lying there, ah. (GP 11, male, aged 55) . He first asked for euthanasia. He had put in a request . there was not that much pain; especially the meaninglessness of it all, he didn’t like that. But then came the reaction of the relatives: especially the children, eighteen and sixteen years old, they said ‘‘No, we want to go on for a while,’’ in such a way that he felt guilty, like: ‘‘I give up too quickly.’’ But he was quickly won over, and the relatives too, to PS. We started that Friday. (GP 45, male, aged 59) Some narratives reveal the legal confusion when converting euthanasia requests into PS and vice versa. GP: If you use the technique of PS for euthanasia, then that can be important because the fact of saying goodbye and see someone slip off in your hands is a totally different feeling than ‘‘I inject and two minutes later it’s finished,’’ huh [.]. But it remains euthanasia; and you have to report it as well, I think [.] Interviewer: Does it bother you that some physicians bypass the judicial euthanasia procedure via PS? GP: [it bothers me] that those physicians tell the patient: ‘‘We will take a natural course’’ and that they don’t do this at all, but that they use [PS] concealing from others and most likely also from themselves that they are actually euthanizing. (GP 36, male, aged 53)
Discussion Existing PS guidelines are widely accepted. However, empirical research on daily PS practice and on the applicability of the guidelines in different EoL care settings (home/hospital/palliative care unit) is scarce.8 In this qualitative study, we scrutinized the perspectives of 52 Belgian GPs on PS. We can corroborate the findings of Anquinet et al.9 that PS home
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practice diverges from the guidelines’ recommendations. Our study brings deeper insights into GPs’ motives. In addition to interviewees who abide by the prerequisites for PS, we have come across broadened moral and clinical opinions. First, the nature of suffering that is regarded as appropriate for reducing consciousness is extended from refractory symptoms to grave discomfort and difficult situations. Second, the impermissibility of life-shortening intentions is in debate: for several GPs, the issue of having to fully endure the dying process is under scrutiny. Third, the pre-emptive use of PS to avoid a futile transfer to the hospital in case of an undesirable turn of events arose. Last, some of the GPs regard PS as a relevant alternative to lawful euthanasia. These findings were irrespective of the GPs’ religious or pluralistic convictions. One explanation for our findings is that in Belgium in 2008, at the time when the interviews were done, no general PS guidelines had been developed, apart from some local circulating protocols and palliative home care teams’ expertise. However, these aberrations have also partly been described in the international literature.10,11 We conclude that there is more to it than a shortage of knowledge of the guidelines or a willful misuse by GPs.
PS Application Methods Diverge Some of the interviewees apply PS by deliberately intensifying morphine administration, on its own or combined with sedatives and other medications. This is viewed as substandard PS practice according to the guidelines, although PS is perceived and used in this way worldwide.12 Especially when the palliative home care team is involved, PS is applied in the recommended way: infusion of specific hypnotics (on top of the patient’s pain medication). Applying PS like this is quite different from ‘‘turning up the tap,’’ which could be prone to impulsiveness. Palliative home care teams, therefore, can play a crucial role in coaching GPs toward a more refined PS practice.13 This also meets the PS guidelines’ recommendation regarding expert consultation before deciding to apply PS.
Broadened View on the Indication Range of PS The fragility of EoL home care is the key factor. One vulnerable aspect is the context of
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support: the patient’s permanent entourage is made up of devoted, yet often inexperienced or fearful relatives, and professional caregivers are not continuously available as is the case in a hospital or nursing home. This could enhance the relatives’ sense of insecurity and lead to decompensation. Another aspect is the limited access to technical diagnostics and therapeutics, needed to adequately tackle the cause of grave discomfort. This reality sharply contrasts with, for example, the European Association for Palliative Care PS guideline’s insistence on thorough investigations to discern untreatable suffering.3 Briefly, in EoL home care, the symptoms or situations may be more readily considered refractory than in hospital, and the ‘‘escape route’’ of hospitalization is often considered undesirable. Hence, the basis for the GPs’ broadened view on the indication range for PS is multifactorial; in addition to focusing on difficult-to-treat symptoms, decision making is co-determined by the desire to appease the dying patient while taking the family carers’ stamina into account anddan important motivedto avoid futile transfers to the hospital. The particular vulnerability of EoL home care also has surfaced in other studies. Ventafridda et al.14 stipulated that, in labeling 52% of 120 terminal cancer patients who were cared for at home as eligible for PS, they did not consider the possibility of hospitalization as an option for patients with unendurable symptoms. Barbera et al.15 found that in 8.4% of the visits by patients to emergency departments in the final two weeks of life, decompensation of the relatives was involved. Even within a group of determined GPs who delivered good palliative care, including consultation with the palliative home care teams, Meeussen et al.16 still found 18% of hospital admissions during the patients’ final weeks of life. If one important consideration of EoL home care is to respect the patient’s wish to die at home, then the pre-emptive use of PS to avoid a futile transfer to the hospital in case of an undesirable turn of events deserves more attention in the PS debate.
GPs’ Views on the Notion of Proportionality PS guidelines state that reducing a patient’s consciousness is not justified for less than
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refractory suffering and dosages of sedatives should be strictly titrated to what is needed to relieve the specific suffering. GPs, however, felt that, once the patient was diagnosed as dying and death was no longer to be avoided, this all seems to lose its medical urgency. GPs seem more intent on creating a state of calm and peace and are less concerned that a certain dose could unintentionally hasten death. The guidelines’ strict viewpoint also has been criticized in the literature. Berger17 wondered why a patient’s wish to die in an artificial sleep should only be permitted in cases beyond hope, especially as PS does not shorten life when applied in a patient’s final days. Miccinesi et al.18 found that 63% of 88 terminally ill patients interviewed would prefer to die in a drug-induced state of unconsciousness. Swart et al.11 found that the GPs’ preference for deep PS right from the start is prompted by the wish of the patient and family alike to avoid any chance of awakening, all the more because the alternative of constantly adjusting dosages is much more difficult to remedy at home than in a hospital. According to this study, GPs are more inclined to take the wishes and aspirations of patients and caregivers into consideration.11
GPs’ Possible (Co-)Intention to Quicken the Dying Process The need to facilitate the dying process has been mentioned, especially when confronted with a trying or lengthy deathbed situation. Our study reveals that several GPs question the value of a bitter dying process and of having to fully endure this inevitable transition from life to death. They want to shorten the length of the patient’s futile suffering. (Co-)intentional hastening of death when applying PS has been documented, also in countries without euthanasia legislation.10,12 In-depth research on this controversial practice is extremely scarce but confirms the profile of compassionate PS for deserving cases.19 ‘‘Thou shalt not kill’’ is paramount in ethical thinking and violations of this tenet trigger highly emotional reactions within society. Dying, however, remains a formidable threshold that all of us wish to take place as serenely as possible. This can result in a reversal of value hierarchies. The issue as to whether facilitating death should be considered unjustifiable in
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all EoL circumstances remains a point of intense debate among medical ethicists and the medical profession worldwide.20 Empirical research into value conflicts near death and especially the importance of having to endure the suffering phase is not available. But physicians and family and friends around the deathbed should at least be aware of these competing values. This could benefit mutual communication and subsequent behavioral patterns.
Using the Technique of PS as an Alternative to Lawful Euthanasia Because legalization of euthanasia raises the general acceptability of euthanasia among physicians and their overall willingness to perform it,21 one would expect that PS use as hidden euthanasia would hardly occur in countries where euthanasia has been legalized. Our previous study on Belgian GPs’ readiness to perform euthanasia revealed that most interviewees had qualms about giving a lethal injection and that several GPs preferred slow euthanasia via PS.7 In fact, the Belgian euthanasia law does not exclude slow euthanasia on the condition that it complies with all legal requirements and procedures.22 For a long time, however, there has been a connotation of euthanasia being limited to a life-ending injection. First, effecting a quick death via barbiturates and neuromuscular relaxants is said to offer the best guarantee for a gentle death. Dying through slow euthanasia could take hours to days and could be very demanding on the proxies.23 In itself, this is a strange argument when we know that enduring the dying process is the norm in regular terminal care. Second, there is the prevailing conviction that a technically visible demarcation between euthanasia and palliation methods is needed; hence, the tendency to favor fast euthanasia and to reserve PS strictly for palliation. Our study shows that there are GPs, patients, and family carers who do not share this opinion. They would, in the case of a euthanasia request, go through the mise-en-sc ene of the deathbed, as it leads to a more natural and less abrupt farewell.24 To complicate things further, there are several EoL situations where all legal and moral requirements for performing both PS and euthanasia are met and where it is the context that will determine which method will be chosen. For example: does the patient want to pass
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away slowly but painlessly or is there a wish to end it quickly? Does the physician impose his own preference for PS? Are family circumstances the determining factor? This could explain why euthanasia requests in the last phase of life are often converted into PS. The key question remains whether applying PS should then be considered as lawful euthanasia or not. To gain insight into the circumstances and number of PS-related slow euthanasia cases, we propose a form of registration of all PS treatments.
Limitations The study does not guarantee to present a representative sample of GPs. However, the fact that recruitment was based on GPs’ registration of a patient as terminally ill with the Health Insurance Fund and not on their personal opinions on PS or euthanasia ensures that the study represents different opinions present in the Flemish GP community. In addition, by interviewing GPs of different ages, life views, locations, and experiences with EoL decisions, this study meets the requirements of a qualitative investigation. Belgian GPs work in an environment where euthanasia has been legalized; our results, therefore, probably cannot be generalized to countries without legalized euthanasia.
Conclusion PS is a powerful tool in the GPs’ palliative care arsenal that needs solid criteria for good practice. However, the existing PS recommendations do not always meet the particular needs of EoL home care, where refractoriness is considered in a much broader context than just symptom based. If one consideration of EoL home care is to avoid the hospitalization of dying people who wish to stay at home, then we think that pre-emptive PS use deserves more attention. As mentioned, we propose a form of registration of all PS treatments to gain insight into the circumstances and number of PS-related slow euthanasia cases.
Disclosures and Acknowledgments This study was supported by a research grant from The Flemish League Against Cancer. The
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authors have no financial or other conflicts of interest to report. The authors thank all 52 GPs for their contributions to this study and for sharing their experiences, opinions, and fears so open with them. The authors also thank Mayke Hundhausen and Ann Cardinael for providing assistance in the transcription and coding of the interviews and Greet Vandenbussche for translating the quoted material into English. The original Dutch-language responses are available on request.
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