Abstract
Abstract
Background:
Most studies that have investigated the practice of palliative sedation have focused on physicians' practices and attitudes.
Objective:
The aim of this study was to explore relatives' experiences with palliative sedation and to gain more insight in positive and negative elements in their evaluation of palliative sedation.
Design:
Focus groups and individual interviews.
Setting:
Various care settings in the Netherlands.
Subjects:
A total of 14 relatives of patients who received palliative sedation until death participated.
Results:
Most relatives evaluated the provision of palliative sedation of their dying family member positively. Positive experiences were related to: the beneficial impact of palliative sedation on the patient's suffering, the opportunity that was offered to prepare for the patient's death, their involvement in the decision-making and care for the patient, and the pleasant care environment. However, the majority of the relatives were unsatisfied with one or more aspects of how information was being provided for. Some relatives were frustrated about the fact that nurses were not authorized to make decisions about the care for the patient and about the absence of physicians during weekends. None of the relatives mentioned the loss of the ability to communicate with the patient during the sedation and the possibility of “hastening death” as disadvantages of palliative sedation.
Conclusion:
Relatives tend to evaluate the provision of palliative sedation to their severely suffering family member positively because it contributes to a peaceful dying process. However, relatives indicated discontent with how information was being provided and with the communication in general.
Introduction
Being a close relative of someone who is in the final phase of life is often complicated. Relatives must handle both their own sorrow and that of the dying person, in addition to addressing a multitude of practical issues. 10 Professionals working in palliative care stress the importance of good care for the relatives of the patient. 11 This can also be seen through the World Health Organization's definition of palliative care, in which providing a support system to help relatives cope during the patient's illness and during their own grief is incorporated. 12 The importance of relatives' well-being is also reflected in guidelines about palliative sedation, which stress that relatives should be involved in the decision-making process, that they can assist in monitoring and caring for the patient, and that they should be clearly informed and supported.13–15
Most studies that have investigated the practice of palliative sedation have focused on physicians' practices and attitudes.16–23 The aim of this qualitative study was to explore relatives' experiences with palliative sedation and to gain more insight into positive and negative elements in their evaluation of palliative sedation.
Methods
As part of a larger study about the practice of palliative sedation and its role in end-of-life care, the UNBIASED study'(UK–Netherlands–Belgium InternAtional SEDation study), we held focus groups and interviews with relatives of patients who received palliative sedation until death. Because of the exploratory nature of the study, focus groups were deemed most suitable. In the focus groups, the group processes were particularly useful in clarifying relatives' views on palliative sedation. 24 Interviews were held when relatives were not able to attend a focus group. The term palliative sedation was systematically used throughout the study, since this is the most commonly used term in guidelines and research papers.1,13–15 We followed the criteria for qualitative research to ensure rigor in our research. 25
Recruitment of participants
Because palliative sedation is used in all settings in which patients die, we focused on a variety of settings. 23 Purposive sampling was used for the selection of participants to make sure different settings were represented, and to achieve variation in relatives' experiences and in types of sedation used. Inclusion criteria of the patients were that they were older than 18 and that their death had been a maximum of 1.5 years ago. Inclusion criteria of relatives of patients who had received palliative sedation until death were: frequent contact with the patient in his/her last phase of life, both prior to and during the sedation, and being Dutch-speaking and residents of The Netherlands. Relatives were not necessarily restricted to family members, but could also include friends. We included one relative per patient. Relatives were contacted no sooner than 3 months and no later than 12 months after the patient's death.
Relatives were recruited using both professional and personal contacts of members of the research team. The professional contacts concerned both nurses and physicians working in the home, hospital, or hospice setting. They were asked to identify the most involved relative of a patient who had received palliative sedation and to contact the relative by sending an information letter from the research team. In the hospice and hospital setting, 25 cases were identified. The relatives of these 25 cases were approached by the health care professional and 8 relatives agreed to participate. Two relatives of all relatives who have been approached by a general practitioner agreed to participate. It is unknown how many relatives were approached by general practitioners in total. Furthermore, we identified cases through our personal contacts. Five relatives were approached and 4 agreed to participate.
Ten relatives were willing and able to participate in a focus group (two focus groups with three participants and one focus group with four participants). Four additional interviews were held with relatives who were willing to participate, but were not able to attend a focus group because of practical reasons. The focus groups and interviews took place between October 2010 and March 2011.
Procedures
A semistructured questionnaire was developed, based on the recommendations described in the Dutch nationwide guideline for palliative sedation and a systematic review on the experiences of relatives with palliative sedation, to ensure consistency in topics addressed across groups. 26 The questionnaire was piloted in three interviews. This led to some small changes in the formulation of the questions. The questionnaire covered several topics: background information of patient and relatives, the decision-making process, information and communication, the process of sedation, and the overall evaluation of the relatives of the use of sedation.
All focus group and interview participants filled in a short questionnaire on socio-demographic data and signed a consent form before the start of the focus groups. The focus groups were led by experienced moderators (A.H., J.R.) and lasted approximately 2 hours. An assistant moderator (S.B.) was present to take notes. The interviews were conducted by S.B. and lasted approximately 60 minutes. Participants consented to the discussion or interview being audiotaped. The Erasmus MC Medical Ethical Research Committee approved the study. The procedure followed the Helsinki Declaration.
Data analysis
The audiotaped discussions were transcribed verbatim and analyzed by constant comparative analysis. We removed names and other information that could lead to identification. After completing all focus groups and interviews, we (S.B., J.R., A.H.) read through all transcripts. Data were analyzed by S.B. using the themes from the questionnaire. Attention was paid to issues that were not explicitly addressed in the questionnaire. As a next step, the results were discussed with J.R. and A.H. until consensus was reached. A professional translator translated the quotes that are presented in the results. Each quote is followed by information on the gender of the respondent (F=female, M=male), the nature of the relationship with the patient, and the setting in which the patient died. When there is more than one respondent with the same characteristics, the gender of the respondent is followed by a number to distinguish the different respondents.
Results
Characteristics patients and relatives
The characteristics of relatives and patients are presented in Tables 1 and 2.
Skin cancer (2 patients), colon cancer (2 patients), lung cancer (2 patients), peritoneum cancer, breast cancer, cervical cancer, esophageal cancer, brain tumor, pleural cancer.
Advanced age.
Hospice (4), nursing home (1), psychiatric/geriatric institution (1), hospital (1).
Decision-making process
Different issues came up while discussing the decision-making process.
Reason(s) for the use of sedation
Relatives believed that the patient's suffering was the most important reason to start palliative sedation. Pain, respiratory problems, fatigue, restlessness, anxiety, confusion, delirium, inability to drink and eat, and nausea were mentioned as decisive factors. Furthermore, although relatives believed that patients' suffering was the main reason to start sedation, their descriptions of “suffering” also included their own suffering as a result of the patients' suffering.
My two children and I said, we are going to propose this [sedation], it couldn't go on like this. And it was the same for him—at least we think it was—but of course you can't ever really know that. But it was so awful for us to be there: to see how he was fighting to breathe, oh and his hallucinations…it is so hard just to stand by and watch. You don't know what is going on inside his head. [F1, partner, home]
Making the decision
The decision to start sedation was either initiated by the patient, the relative, or the physician. Sometimes it was the patient who specifically asked for sedation. In these cases, patient and relatives had previously discussed the option of sedation with the physician. In the end, the physician made the final decision to start sedation and the relatives gave their consent.
So the general practitioner explained it to him. Yes (…) that it was possible just to be put to sleep and to let the body itself take over. And he (the patient) said that he would prefer palliative sedation. He really wanted to sleep through the very last bit. He consciously wanted to say goodbye and then go to sleep. He made the choice himself, and we had talked about it a few times. (…) I supported his decision, well rationally I did, but emotionally you would rather it had gone differently. [F2, partner, home]
In a couple of cases, relatives asked for the sedation. Again, the physician made the final decision to start sedation. The relatives were positive about physician's involvement.
Yes it was at our own request. (…) We talked to him (the patient) about sedation, well we talked about it a bit but he didn't express any particular opinion about it. But he did say that he didn't want to have to fight for breath, or be in any pain—that sort of thing. (…) He was so thirsty all the time and he was given morphine for it. But then he began to hallucinate and became very restless, and then we got to the point that we said…. (…) to the doctor, I said “Well it's time to give him some strong sedating medication.” [F1, partner, home]
The majority of the relatives stated, however, that the physician was the one who proposed the use of sedation. This proposal was in most cases preceded by a discussion between physician and relatives about the need to relieve the patients' suffering.
The night before he died he was given injections to calm him but they didn't help at all. (…) .The doctor said that it was inhuman to go on like this. (…) The doctor discussed this with me and the boys. (…) And then the next day they brought a pump…. and then he went to sleep and he didn't wake up again. [F3, partner, home]
A few relatives mentioned, however, that the physician made the decision without involving them at all. The reason to start the sedation was not always clear for these relatives.
We assumed that if sedation was going to be given, then it would be the patient who made the decision. That the patient would say that he couldn't stand to go on like this (…). But in reality….we left on Sunday morning, change of shift, and we came back in the evening and we heard that she had been given an injection that had knocked her out and you think, well, you think what's going on? What on earth has happened? And that's…well you think “This just isn't right”. (…) So it meant my mother wasn't in pain. And that's…but I still don't understand. Why did it have to happen like that? [F, child, hospice]
And then the telephone call came that the bodily functions were beginning to shut down (…) Then of course you ask “Well, what now?” Is he in pain? No he is not in pain. And, well he is slowly dying. I don't know what they did to him, no idea. The only thing I am sure of is that the last 2 or 3 days, that the well-known “pain pump” was attached. And then you assume that sedation has in fact begun. [F, child, nursing home]
Negative emotions regarding the decision-making process
Some respondents mentioned their frustration regarding the fact that nurses were not authorized to make decisions about the care for the patient, whereas they were most of the times the only ones that were available. Another point of critique that was mentioned was that the physician was not available during the weekend.
So I always had a problem with the fact that medical care is from 9:00
Information and communication
Adequate information and communication between the patient, relatives, physicians and other professional caregivers were considered as very important by the relatives. In all cases but one, the relatives mentioned that professional caregivers had discussed end-of-life issues with them and (when possible) with the patient. These conversations took place at different phases in the disease process.
We had already talked about euthanasia at an earlier stage, and about palliative sedation—with the general practitioner. He (the patient) also had a written declaration of intent regarding euthanasia and a do-not-resuscitate statement. We got all that sorted out. Also because we had no idea what was going to happen. [F2, partner, home]
Two days after we knew he was sick we went to the general practitioner and we discussed the possibilities (…). And we discussed sedation. And he (the patient) made clear he wanted that. [F4, partner, home]
Nine relatives were, at least at one point in time, dissatisfied with the amount of information they had received. Some of these relatives expressed a lot of criticism, while others only briefly mentioned this. Relatives' were discontent with (insufficient) information about: sedation in general, the early start of the sedation, the drugs that were used, further treatment (e.g., artificial nutrition and hydration), the well-being of the patient during the sedation, the expected duration of the sedation, the time of death, and/or the possible symptoms or reactions of the patient during the sedation.
And (they didn't) tell us what sort of symptoms to expect and what the patient's reaction could be. There you are then (sighs). All on your own, you have to go through it all on your own. [F5, partner, home]
No. Everything was lumped under one heading—pain relief. The words euthanasia or palliation—I can hardly bring myself to say them—they were never mentioned. [M, child, psychiatric/geriatric institution]
Yes, what's it really about? Yes…communication…of course. They didn't say “We are going to start morphine now and we are going to add some midazolam and then you can expect….” because they just don't think that way…it's not what they do. [M, child, psychiatric/geriatric institution]
Interviewer: “How do you think things could have been done better?
Respondent: “Yes—communication. Clearly say what is going to happen, say what you are going to do and what the consequences will be—not only for the person it is being given to, but also for the people around them—say what can happen. [F, child, nursing home]
Sometimes the content of the information was unclear.
I mean they did not tell us what it practically means. (…) OK. My daughter-in-law knew about these things, yes but that wasn't really—maybe that is why it was not explained, because they automatically assumed that we would know too. And we didn't ask, didn't ask what is going to happen because…well, again all the time we were only thinking how much longer does this have to go on. Please let it be over as soon as possible. [M, parent, hospital]
Sometimes relatives received conflicting information from different professional caregivers.
They weren't a team. They were all working individually and sometimes against each other. It just makes you so uncertain about everything (…). Sometimes we had to make the decisions about what to do. (…) And I was confronted with more than one way of working; and that shouldn't be allowed. [F5, partner, home]
Some relatives had the feeling that they were not being taken seriously by the physicians.
As a family, we just weren't taken seriously. Information about him and the care and so on, it really wasn't taken seriously. And I think it is a real shame, and I also think that it is wrong. After all who knows the person better than those who are with him all the time? The nurses took us seriously, but the others didn't. [F5, partner, home]
Euthanasia
Although the issue of euthanasia was not explicitly addressed in the focus groups or interviews, almost all respondents referred to it in some way. Some relatives distinguished sedation and euthanasia as clearly different options, whereas others referred to sedation as “slow euthanasia.”
Yes, if you stop that treatment, then they wake up again. In that respect it has nothing to do with euthanasia. [F, daughter-in-law, home]
Actually I think…to me palliative sedation is also a form of euthanasia. You send someone to sleep, and then instead of it all being over in 5 minutes like it would be with euthanasia, it takes 2 days. [M, partner, hospice]
Some patients were admitted to a care setting that had a no-euthanasia policy. The attending physicians had been clear about this and in most cases, the patients and relatives accepted or agreed with this policy.
I am still a supporter of euthanasia. (…) But we had taken this into consideration (…) and in a very pleasant care environment, then you accept palliative sedation because, well, I'll put it this way, it is still a humane—you know what I mean—solution. [M, partner, hospice]
Some relatives mentioned that the patient had expressed a wish for euthanasia and that the physician had offered sedation as an alternative.
Actually, she (the patient) wanted active euthanasia (…). And the general practitioner was willing to perform euthanasia. But then he came with the option to put her to sleep (…) He explained that performing active euthanasia is very burdensome. And she didn't want that for us, and the children. And then she decided she wanted to be put to sleep. [M1, partner, home]
Relatives' involvement in the process of sedation
The involvement of relatives in the sedation process varied. All relatives visited or stayed with the patient during the sedation. Most relatives provided the physicians and nurses at some point with information about the well-being of the patient. Some relatives provided (most of) the care for the patient themselves (e.g., the administration of the medication).
We were with her a lot, also when she was receiving professional care. So there came a point when although the caregivers didn't see it, we did and we said “She's in pain. [M, child, psychiatric/geriatric institution]
The pump was connected on Thursday and on Wednesday he passed away. All this time at home, we provided all the care. [F5, partner, home]
Overall evaluation of the provision of palliative sedation
Eleven relatives evaluated the provision of sedation to their dying family member overall as positive. The start of the sedation was most of the times seen as a relief, both for the patient and for the relatives themselves. During the sedation the patient seemed comfortable. According to most relatives, sedation had been the best solution.
But you have to—otherwise something like this is just unbearable for him. And that would be terrible. We, the people around him, couldn't have coped otherwise because he didn't know what he was doing any more and he needed to relax. He was so wound up, he kept trying to get out of bed and that just wasn't possible. That's not good for you and certainly not for the patient…And this is a very nice way of doing it. Yes, it is. [F5, partner, home]
I think it is a good process in that you actually allow your body to go its own way, that you are no longer interfering with the natural process. And it means that the last battle can be fought unconsciously, that you no longer have to experience it actively. I can see that from the patient's point of view it can be a relief, but also for us. [F2, partner, home]
Overall, the relatives were positive about professional caregivers.
I am full of praise for them. Both the doctor and the nurse, they did everything, you just had to ask and they did everything in their power. [M, parent, hospital]
The place of death was in all cases in agreement with the wishes of the patient. The relatives were glad they could fulfill the wish of the patient.
Well, then she expressed the wish to die here at home. And that is what I did…I helped. (…) A hospice would have been easier for me of course. But that is not the point, it's what she wanted. [M2, partner, home]
Some relatives also mentioned their satisfaction with and the importance of the care environment.
We are really full of praise about the way it went, (…) and really I mean that. (…) We were very lucky that he was put into a room that was quite large. (…) There were fold-up beds so we could be there day and night. (…) The experience of wanting to and being able to do that was really marvelous. They also provided us with food like it was the most normal thing. I mean, it was really fantastic. (…) They gave us a room where we could go and talk privately. Oh—it was…yes, really. I keep saying it but I can't praise them enough. [M, parent, hospital]
The respondents knew that death was near. The sedation provided an opportunity to prepare, to some extent, for the loss of their loved one.
The advantage of something like this, I mean euthanasia—and this as well—is that you know roughly when it is going to happen and you can say goodbye to each other in a conscious way, it is a good way to part. [M1, partner, home]
A few relatives had a more negative experience with the provision of sedation. Sometimes this had to do with symptoms or reactions of the patient during the sedation. The relatives were concerned about the patient's wellbeing.
The time finally came to start sedation, with a pump. That meant that we knew the time would come (…) when she would no longer regain consciousness. And then the moment came when the last words had been said. We had embraced each other for the last time and were waiting for her to fall asleep. (….). For me that was confirmation that I knew that once she went under, she would indeed go peacefully. But, looking back she woke up twice, oh what a situation was that. When she had to go back to sleep it didn't work. .(….). She was in so much pain. [F, child, hospice]
The duration of the sedation varied from five hours to one week. The duration of the sedation had consequences for the relatives' wellbeing. The longer the sedation process, the higher the burden for the relatives.
On Friday she was started on morphine (…), and you just mentioned Dormicum, I think that she received that too at some point (….), and she died on Wednesday. We thought that this was really a very long time to go on—and a time that has had a really big impact. I don't use the word “traumatic” lightly, but the experience of going through the last phase from say, Friday to Wednesday—it's a very long time. It was a very difficult time. [M, child, psychiatric/geriatric institution]
Discussion
Information about the concerns and needs of relatives of patients who receive palliative sedation can assist health care professionals in providing information and support to relatives during this difficult time in their lives. 11 The aim of this study was to explore how relatives evaluate palliative sedation and to gain more insight into positive and negative elements of their experiences. We found that many relatives had positive experiences with the provision of sedation for their dying family member. The start of the sedation was a relief for relatives because the patient's suffering was finally alleviated. Relatives often appreciated having an active role in decision making and the provision of the sedation. Other positive experiences related to the degree of involvement of professional caregivers, the appropriateness of the place of death, and the care environment. On the other hand, several relatives indicated that they were dissatisfied with the information they received and about communication in general. Other negative experiences were related to concerns about the well-being of the patient during sedation, especially when the sedation process lasted long, the lack of authority of nurses to make decisions, and the absence of physicians during the weekends.
A few findings deserve particular attention. First, although relatives believed that patients' suffering was the main reason to start sedation, their descriptions of “suffering” also included their own suffering. According to the guideline, the indication consists of one or more refractory symptoms experienced by the patient. 13 Although in palliative care the patient and the relatives together are “the unit of care,” relatives' suffering is not mentioned as an indication for sedation. This issue needs further attention in research.
Second, it was striking that the majority of relatives in our study expressed dissatisfaction with one or more aspects of communication and the provision of information. For instance, the physician sometimes made the decision to start sedation without involving relatives, although the guideline on palliative sedation recommends physicians to actively involve relatives in the decision making, despite the fact that they bear final responsibility for the decision. 13 Many studies about end-of-life care report that the provision of information and communication are inadequate and insufficient. 10 A Japanese study on relatives' experiences with palliative sedation showed that insufficient information can lead to low levels of satisfaction and high levels of distress. 27 Our results support the findings from previous studies, i.e., that relatives experience distress due to a lack of information or unclear information. Such distress may be diminished by discussing the patient's situation openly; providing full information, e.g., about the moment of the start of sedation, the drugs used, and/or possible symptoms or reactions of the patient during sedation. Furthermore, proper communication between the different caregivers can enhance clarity of the situation for the relatives.
Although the majority of relatives seemed to experience distress due to a lack of information or unclear information, they generally evaluated the sedation of their loved ones positively. Such positive evaluation of palliative sedation was mostly related to patient's symptom relief. Before the start of the sedation, patients presented multiple distressing physical symptoms, such as severe pain, fatigue, and restlessness. During the sedation most patients seemed comfortable. Relatives indicated that they appreciated the fact that the patient could die “naturally,” without burdening medical interventions. Previous studies have also shown that adequate symptom relief is key to the experience of a “good death.”28–31 Furthermore, palliative sedation makes relatives themselves feel more comfortable because it allows them a sense of peace and closure after a difficult period of suffering. 9 Additionally, several relatives mentioned that the use of palliative sedation provided them with the time necessary to prepare for the loss of their loved one. They knew that death was near and could say goodbye to the patient in a conscious way. None of the relatives in our study mentioned loss of the ability to communicate during the sedation with the patient as a disadvantage of palliative sedation. This is in contrast with the frequency with which loss of communication is discussed as a problematic aspect of palliative sedation in the literature.27,32,33 Findings from the current study suggest that the benefits of palliative sedation outweighed the loss of the ability to communicate with the patient before death.
Almost all relatives talked about the issue of euthanasia. Some relatives considered palliative sedation as “slow euthanasia,” others as a terminal intervention that is sharply distinguished from euthanasia. The ethical debate about palliative sedation often focuses on its presumed potential to hasten death. 23 However, none of the relatives in our study mentioned the possibility of “hastening death” as a disadvantage of palliative sedation. A possible resemblance of palliative sedation to euthanasia seems to be no issue for these relatives, which may be related to the public and legal acceptance of euthanasia in The Netherlands.
Both our focus groups and personal interviews appeared to be successful methods for exploring relatives' experiences with palliative sedation. The relatives appreciated the opportunity to share their stories, and felt that it helped them to deal with their grief. Nevertheless, our study has some limitations. The number of respondents was small. Therefore, the study can only be seen as explorative and not as conclusive. However, the number of respondents included was appropriate for answering the research question. Second, because the anonymity of the respondents had to be guaranteed, the results could not be specified by setting. Third, to be sensitive to the early phases of grieving, relatives were contacted no sooner than 3 months after the death of the patient. The data could be influenced by recall bias. Furthermore, a focus group usually consist of six to eight participants. Our focus groups included three or four relatives. Possibly, this diminished the dynamic interchange between the group members. Because of the sensitivity of the issue discussed, we chose to use smaller focus groups, which worked well. Finally, sedation occurs in all settings in which patients die but most often in hospitals. 15 Unfortunately, we were not able to recruit more relatives of patients who received sedation until death in a hospital.
In conclusion, the relatives involved in this study seem to agree that palliative sedation is a beneficial intervention for patients who are severely suffering at the end of their lives. It relieves patient's suffering and provides relatives with a sense of peace and closure after a difficult period. Also, communication with relatives seems a challenge for physicians and nurses involved in this practice. The loss of the ability to communicate with the patient during the sedation and the possibility of “hastening death” do not seem to be issues for the relatives.
Footnotes
Acknowledgments
This focus group study is part of a larger study about palliative sedation and its role in end-of-life care: The UNBIASED study. The 'UNBIASED' study (UK–Netherlands–Belgium International SEDation study) is a collaboration between research teams in the United Kingdom, Belgium, and The Netherlands with funding from the Economic and Social Research Council (United Kingdom), the Research Foundation Flanders (Belgium), the Flemish Cancer Association (Belgium), the Research Council of Ghent University (Belgium), The Netherlands Organisation for Scientific Research and the Netherlands Organisation for Health Research and Development (The Netherlands). We thank the relatives who participated in the focus groups.
J.R. and A.H. designed the study; J.R., A.H., and S.B. collected the data. S.B. analyzed the data. The results were discussed with J.R. and A.H. S.B. wrote the paper, which was critically read by all the authors. All authors approved the final version. A.H. is guarantor.
The study obtained ethics approval from the Erasmus MC Medical Ethical Research Committee, NL33327.078.10, v03. All participants gave informed consent before taking part. The procedure followed the Helsinki Declaration.
Author Disclosure Statement
No competing financial interests exist.