The Attitudes of Indian Palliative-care Nurses and Physicians to Pain Control and Palliative Sedation

INTRODUCTION

When a patient enters the terminal stage of a disease like cancer, intensive treatment of pain and other symptoms will often be required to preserve quality of life. Nevertheless, many medical professionals consider such intensive pain and symptom management controversial. Surveys have shown that large proportions of physicians and nurses still think intensive pain treatment and palliative sedation hasten death. Bendiane et al and Peretti-Watel et al found that 27% of French home-care nurses and 17% of general practitioners considered prescribing high-dose morphine to be euthanasia.[12] In many publications and discussions, euthanasia is understood in a broad sense as a deliberate medical act or omission that has a life-shortening effect that is accepted or aimed at by the physician involved.[3] Therefore, the use of the term euthanasia for the prescription of high-dose morphine by one fifth of French home-care nurses and one sixth of French GPs seems to imply that these groups believe intensive pain control with morphine hastens death. Such beliefs may influence medical decision making at the end of a patient’s life. In a Belgian study, the treating physician thought to have alleviated pain and symptoms with opioid doses that may have shortened the patient’s life in 17.2% of all studied deaths.[4] In the Netherlands, this was the case in 14.7% of all studied deaths.[5] Intensive pain management with opioids is not the only type of pain and symptom management that is often believed to hasten death. Several authors have likened palliative (terminal) sedation to a form of (slow) euthanasia, assisted suicide, or mercy killing in disguise.[6–11] Due to convictions of this kind, pain and other symptoms may remain under treated.[12–14]

In India, fears of addiction and respiratory depression have caused aversion to morphine among medical professionals, and have lead to legal restrictions on the use and distribution of morphine. In recent years, efforts have been made to make morphine more easily available for the treatment of pain in India. Yet, many patients suffering from diseases like cancer and HIV/AIDS still die in pain because availability of morphine remains a problem, the patients, their relatives and the treating physicians are unaware of even the basic principles of palliative care, and the parties involved still fear that intensive pain management may bring about unacceptable side effects, cause addiction to morphine or hasten death.[15–22]

Physicians and nurses who are caring for terminal patients within palliative-care settings in India can be expected to be much more knowledgeable about the complexities of pain control and palliative sedation. Therefore, their attitudes toward pain control and palliative sedation may differ greatly from these of their colleagues working in Indian health care in general. Studies in other countries showed that notions and opinions about pain management are influenced by experience in terminal care. Hollen et al observed that practice setting and pain education influence knowledge, as well as attitudes, about pain.[23] The above-mentioned French study of Bendiane et al showed that experience in terminal care influences attitudes to pain management. The authors of this study found that the opinion that prescribing high-dose morphine to terminally ill patients is euthanasia is more frequently held by nurses who have not followed terminally ill patients during the previous three years, and by nurses with less knowledge about pain management involving opioid analgesics.[1]

From these observations, we may not assume, however, that Indian palliative-care nurses and physicians consider pain control and palliative sedation unproblematic. Expert knowledge may make them more aware of more profound ethical issues and context specific problems related to pain control and palliative sedation. So far, the attitudes of Indian palliative-care nurses and physicians toward pain control and palliative sedation have not been studied. The aim of the present study is to assess Indian palliative-care nurses and physicians’ opinions and attitudes toward pain control and palliative sedation, and to find out to what extent Indian palliative-care physicians and nurses consider pain control and palliative sedation acceptable and for which reasons. In this study, pain control is understood as the intentional administration of analgesics and/or other drugs in dosages and combinations required to relieve pain adequately. Palliative sedation is defined as the intentional administration of sedative drugs in dosages and combinations required to reduce the consciousness of a terminal patient as much as necessary to adequately relieve one or more refractory symptoms.[32425]

MATERIALS AND METHODS

Since Indian palliative-care physicians and nurses are experienced in the treatment of pain and symptoms, their attitudes toward pain control and palliative sedation can be diverse and complex. Therefore, an explorative qualitative research design was required to gain insight into these attitudes. We opted for face-to-face interviews following grounded-theory methodology[2627] using a semi-structured questionnaire. To gain access to eligible participants, we contacted the directors of four institutions and organizations that provide palliative care in New Delhi and explained them the aims and methodology of the research project. The directors of all contacted institutions and organizations were willing to support the research project and granted permission to interview physicians and nurses working in the palliative-care programs. In two institutions, there was an ethics committee, and approval of the research project by these committees was required before any physician or nurse working in these institutions could be interviewed. The directors of the palliative-care programs in these institutions obtained the approval of the respective ethics committees. The directors of the palliative-care programs provided a list with the names of physicians and nurses in their institutions or organizations who had been working in Indian palliative care since at least 5 months, and who were fluent in either Hindi or English. The number of interviewees was not fixed in advance, but depended on when theoretical saturation would be reached. Theoretical saturation occurs when further data collection and analysis would not yield new aspects or insights. Theoretical saturation was reached after 27 interviews.

The semi-structured questionnaire which was used during the interviews covered several issues related to palliative care, ethical attitudes, and worldview. We asked the interviewees to provide some demographic information about themselves and to explain why they were working in palliative care. The questionnaire contained several questions about the respondents’ experiences with patients. The participants were offered eight hypothetical cases dealing with treatment decisions in advanced disease. Two of these cases dealt with pain control and palliative sedation. We also extensively enquired after the interviewees’ ideological and religious views and practices. The order of the questions and cases in the interviews was not fixed. As much as possible questions were asked and cases presented in relation to what the interviewee had said. Answers of the interviewees to questions or cases triggered new questions, which were sometimes also asked in subsequent interviews to obtain a clearer picture of the opinions and attitudes of Indian palliative-care physicians and nurses. In the present article, we will only deal with the interviewees’ reactions to the cases dealing with pain control and palliative sedation. The other issues that were dealt with during the interviews were part of other separate studies and are discussed in separate articles.

We solicited the interviewees’ opinions on pain control and palliative sedation through two hypothetical cases each followed by a focused question. In the first case, a patient’s pain was controlled with a high dose of painkillers and the interviewee was asked whether there is any limit for the administration of these painkillers. In the second case, a patient was experiencing uncontrollable pain and the treating physician decided to use palliative sedation. The interviewee was asked whether palliative sedation is a proper treatment in this case. To avoid confusion over the meaning of the term palliative sedation, the term palliative sedation was not used in the case that was read to the participants. In order to allow interviewees to make ethical distinctions by themselves, initially several aspects of the treatment decisions were purposefully left undetermined in both cases.

RESULTS

DISCUSSION

The Indian palliative-care nurses and physicians believe that in most cases pain can be effectively controlled. They argue that medical advancements in the treatment of pain almost always allow the palliative-care team to ease physical pain to acceptable levels. They are also convinced that intensive pain control does not hasten death, provided painkillers are correctly administered and properly titrated. Regarding pain control, the opinions of the Indian palliative-care physicians and nurses are in line with the evidence of studies showing that painkillers even in high doses do not hasten death if administered properly and titrated according to pain.[28–35] Since Indian palliative-care nurses and physicians think properly titrated painkillers do not hasten death, they do not consider administration of pain killers in large doses an ethical problem.

The observation that palliative-care physicians and nurses do not consider administration of painkillers in large doses an ethical problem should be taken into consideration when conducting further research on the attitudes of medical professionals toward pain control. The authors of many earlier quantitative studies on physicians or nurses’ attitudes and practices regarding pain control have assumed that intensive pain control does hasten death. The assumption of the death-hastening effect of intensive pain control has influenced the wording of the questions regarding pain control in these surveys. This has, for instance, been the case in the Dutch surveys conducted since the early 1990s by van der Maas et al, in which the contacted physicians were asked whether, “to alleviate pain or symptoms, they had ever decided to give such dosages of opioids that they had to accept the risk of shortening the patient’s life.”[536] Also in more recent surveys similar questions can be found. Van der Heide et al asked physicians whether they had intensified “the alleviation of pain and suffering while taking into account the possibility or certainty that this would hasten the patient’s death, or partly with the intention of hastening the patient’s death”.[37] Parker et al asked their respondents whether they would be ready to intensify the alleviation of symptoms by using drugs in a patient who is experiencing severe pain or suffering, “taking into account the probability or certainty that this could hasten the end of a patient’s life.”[38] Such questions are not in line with recent findings that show that proper pain control does not hasten death, and may confuse respondents like the Indian palliative-care nurses and physicians, who do not share the opinion that administration of painkillers in large doses hastens death.

The physicians and nurses in this study are not absolutely opposed to palliative sedation. Yet, they warn that palliative sedation should be administered carefully and for the right refractory symptoms. Some interviewees pointed out that reduction of consciousness is not a proper treatment to control physical pain. They argued that palliative sedation should be used to control refractory psychological suffering or anxiety. The focus on psychological distress as a refractory symptom that may require palliative sedation may sound remarkable since in earlier surveys medical professionals considered refractory physical suffering the most important indication for palliative sedation. In Connecticut, 78% of internists found palliative sedation ethically appropriate if a terminally ill patient has intractable pain despite aggressive analgesia.[39] Two other studies showed that physicians and experts in medical ethics are more likely to approve of palliative sedation in the case of a patient who is suffering physically, rather than in the case of a patient who is going through existential or mental suffering.[1040] Yet, Muller-Bush et al observed that from 1995 to 2002 the main indication for palliative sedation had shifted from refractory physical symptoms to psychological distress.[41] In the West, this shift has been explained by advancements in the treatment of physical suffering. Due to these advancements patients are less troubled by physical suffering, and focus more on existential or psychological issues.[4243] The increased focus on existential or psychological issues by the patients may have made the treatment of refractory psychological distress more urgent. In India, a significant proportion of palliative-care physicians and nurses seem convinced that pain can always be sufficiently controlled without palliative sedation, and that, therefore, palliative sedation should not be used to treat physical pain.

As long as the reduction of consciousness remains light, the physicians and nurses in this study do not consider palliative sedation problematic. A few interviewees likened mild palliative sedation to the light reduction of consciousness which can occur as an unintended side effect of the administration of analgesics. These participants did not make an ethical distinction between these two types of sedation. In the case of palliative sedation, sedation is purposely induced to control refractory symptoms. In the other case, the reduction of consciousness is an unintended side effect of pain control with analgesics. For a few participants, confusion of these two types of sedation seems to be rooted in the idea that morphine can be used to reduce a patient’s consciousness with the aim of relieving refractory symptoms. Research has shown, however, that morphine is not a suitable drug for that purpose.[44]

For various reasons, many participants consider deep continuous palliative sedation a questionable practice. The concerns voiced by the palliative-care nurses and physicians regarding palliative sedation in general and deep continuous palliative sedation in particular show that the interviewees are committed to the physical, psychological and social wellbeing of the patients and their relatives, and that they do not opt for palliative sedation as an easy way out. Yet, not all of the nurses and physicians’ concerns may be justified, and might in some cases even prevent the physicians and nurses from administering deep continuous palliative sedation to patients who may actually be better off with deep continuous palliative sedation. Two opinions expressed by the interviewees regarding deep continuous palliative sedation are disputable: the opinion that palliative sedation especially when deep and continuous, may hasten death, and the opinion that deep continuous palliative sedation will lead to unacceptable social loss.

The conviction that palliative sedation may hasten death is held by some physicians experienced in terminal care. In the study of Morita et al, 17% of Japanese oncologists and palliative-care physicians considered palliative sedation practically indistinguishable from acts to hasten death.[45] Yet, most studies comparing survival of sedated and non-sedated patients have not found significant differences in survival time.[3446–50] Sykes and Thorns even observed that patients who had received sedation during the last seven days of their lives had longer survival from admission than patients who received no sedation or those who received sedation only in the last 48 hours of life.[51] The Indian palliative-care nurses and physicians may also have noticed that the differences in survival time between sedated and nonsedated patients are limited, if at all occurring. This may explain their reluctance to use the assumed death-hastening effect of palliative sedation as an argument against the treatment.

Some interviewees objected to continuous deep palliative sedation because such sedation would impede basic daily activities and social contacts. The interviewees argued that a patient who remains deeply sedated until death is unable to eat and drink orally, and cannot converse with relatives and friends. Although communication with family and friends, and the oral intake of food and liquid are important for the patient and his or her relatives until the very last moment of a patient’s life, these activities should not be used as an absolute criterion to judge of the ethical acceptability of a treatment like palliative sedation. They are just two of the aspects that have to be taken into consideration while deciding on the administration of palliative sedation. In studies, the mean survival after the onset of palliative sedation has been found to be just one to six days.[42] The palliative-care team, the patient, and his or her relatives should decide together whether the possibility to communicate and feed the patient orally during these few days outweighs the benefits brought by deep continuous palliative sedation.

CONCLUSION

This study shows that Indian palliative-care nurses and physicians do not consider the administration of painkillers in large doses an ethical problem, provided the pain killers are administered correctly and titrated against the patient’s pain. Although the physicians and nurses consider light reduction of consciousness acceptable, some interviewees have doubts and fears regarding deep continuous palliative sedation. Due to these fears and doubts, deep continuous palliative sedation may sometimes be too easily discarded as a treatment option for refractory symptoms.