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Exploration of Concerns of Relatives During Continuous Palliative Sedation of Their Family Members with Cancer
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Journal of Pain and Symptom Management
Vol. 38 No. 3 September 2009
Clinical Note
Exploration of Concerns of Relatives During Continuous Palliative Sedation of Their Family Members with Cancer Silvia van Dooren, PhD, Hetty T.M. van Veluw, RN, Lia van Zuylen, MD, PhD, Judith A.C. Rietjens, PhD, Jan Passchier, PhD, and Carin C.D. van der Rijt, MD, PhD Department of Medical Psychology and Psychotherapy (S.v.D., J.P.), Department of Medical Oncology, Daniel den Hoed Cancer Center (S.v.D., H.T.M.v.V., C.C.D.v.d.R.), Department of Medical Oncology (L.v.Z.), and Department of Public Health (J.A.C.R.), Erasmus MC, Rotterdam, The Netherlands
Abstract Data on the experiences of relatives during continuous palliative sedation are scarce. Because these relatives may be the ones most closely involved with the patient, it is important to evaluate the possible burdens that they experience. We aimed to explore and evaluate concerns of relatives during continuous palliative sedation of their family members admitted to an acute palliative care unit. Through retrospective multidisciplinary record research, we obtained data on concerns of the relatives during the period that continuous palliative sedation took place. From October 2001 to October 2004, 45 patients died after starting continuous palliative sedation. In 51% of the cases, the relatives expressed concerns after starting the therapy. Concerns could be distinguished into three main themes: concerns about the aim of continuous palliative sedation (27%), concerns related to the well-being of the patient (29%), and concerns related to the well-being of relatives themselves (18%). Patient and sedation characteristics did not differ significantly between sedations in which relatives did and did not express concerns, except for the duration of the sedation. The median duration of the continuous palliative sedation when concerns were expressed was 46 hours, compared with 19.5 hours when this was not the case (P < 0.05). Both the nature and extent of the concerns suggest that relatives are in need of continuous information and professional guidance during continuous palliative sedation of their family members. Availability of caregiver guidance and clear process documentation are crucial and indispensable in providing this. J Pain Symptom Manage 2009;38:452e459. Ó 2009 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Palliative care, sedation, family, symptom control, palliative care unit
Introduction Address correspondence to: Silvia van Dooren, PhD, Department of Medical Psychology and Psychotherapy, Room cf-208, Erasmus MC, P.O. Box 2040, 3000 CA, Rotterdam, The Netherlands. E-mail: s.vandooren@ erasmusmc.nl Accepted for publication: November 10, 2008. Ó 2009 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.
By recommendation of the European Association for Palliative Care, palliative sedation is defined as the use of sedative medications to relieve intolerable and refractory suffering by a reduction in patient consciousness.1 The aim of 0885-3924/09/$esee front matter doi:10.1016/j.jpainsymman.2008.11.011
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this sedation is to alleviate patient’s suffering from refractory symptoms (i.e., severe symptoms for which treatment is no longer possible, or for which treatment will lead to unacceptable side effects). The most commonly reported refractory symptoms, and therefore, reasons for palliative sedation are terminal restlessness, dyspnea, and pain.2e6 Following the subcategories proposed by Morita et al. (2001),7 distinctions can be made in the degree and duration of sedation, and the pharmacological properties of the sedative. In the current study, all patients received primary continuous deep sedation.7 More insight into the sedation characteristics in the patients in the current study is given in Rietjens et al.6 Professionals working in palliative care stress the importance of good care for the relatives of the patient, because they are the ones who are often present during the last period of the patient’s life, and obviously, the most closely involved and concerned with the patient. The World Health Organization definition of palliative care incorporates providing a support system to help the family cope during the patient’s illness and during their own bereavement.8 The family is almost always involved in the decision-making process regarding palliative sedation. An extensive interview study among physicians in The Netherlands showed that the decision to use sedation was almost always discussed with the relatives of the patient (93%); in 25% of cases, the patient was considered incompetent or obtunded.5 In the study by Rietjens et al. in the palliative care unit (PCU) at our cancer hospital, the decision to use sedation was discussed with relatives in 89% of the cases.6 With regard to experiences of relatives of patients who receive continuous deep palliative sedation, studies appear to be scarce. Morita et al. (2004)9 studied the concerns and needs relatives had regarding continuous palliative sedation. In a study among 185 bereaved relatives on satisfaction and distress levels regarding palliative sedation in their family member, 78% expressed some level of satisfaction (ranging between slightly satisfied and completely satisfied). Twenty-five percent of the relatives reported that they had felt ‘‘very distressed’’ or ‘‘distressed’’ during the period of sedation. The relatives, however, were contacted a minimum of two years after the
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family member’s death, which implies recall bias as a limitation of this study. The authors adopted this time frame on purpose, because of the possible emotional burden that would have been placed on the relatives in case of an earlier approach.9 Another publication from the same study focused on the spontaneous comments that the relatives put in the questionnaire.10 The relatives reported that they had experienced feelings of guilt, helplessness, and physical and emotional exhaustion during the dying phase. They had desired symptom relief for their family member, wished to communicate with the family member before sedation began, wanted to understand their family member’s suffering, and wanted their family member to be treated with dignity. The authors concluded that clinicians need to be aware of these themes as being important for the relatives. They need to reassure the relatives and give sufficient information on the situation regarding the dying family member. A qualitative study exploring nurses’ experiences with palliative sedation in an American PCU and an American intensive care unit (ICU) reported that, next to the patient’s suffering, the distress experienced by the family was a reason for the use of palliative sedation. Furthermore, palliative sedation was considered not only as a positive contribution to the patient’s quality of dying but also as a positive contribution to the experience of the relatives; seeing their family member die while sedated offered them a sense of peace and closure after a difficult period of suffering.11 Information on the concerns and needs of relatives of patients who receive palliative sedation is of prominent importance to health care professionals. Based on more insight into the concerns of the relatives during the sedation process of their loved one, health care professionals can provide tailored information and support to the relatives during this difficult time in their lives. We aimed to explore and evaluate concerns of relatives during the use of continuous deep palliative sedation until death in their family member. An important advantage of our study is that the concerns were noted while the continuous deep palliative sedation was still ongoing, without recall bias. Furthermore, we explored if there were
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differences in patient characteristics when relatives did express concerns compared with when they did not.
Materials and Methods Palliative Care Unit At the time of this study, the specialized acute PCU of the Erasmus MC-Daniel den Hoed Cancer Center consisted of 11 beds. The main purpose of this PCU is to provide symptom control for cancer patients in an advanced stage of their disease, and to discharge them after adequate levels of symptom control have been reached. Because patients admitted to this PCU usually suffer from a wide variety of severe symptoms, daily multidisciplinary meetings are held with nurses, medical oncologists, an anesthesiologist, a psychiatrist, and a neurologist. In a number of cases, discharge is not possible because, during admission, the dying process sets in. Specialized care during the dying process is provided for within the framework of the Dutch version of the Liverpool Care of the Dying Pathway (LCP).12,13 The LCP is a standardized registration method to monitor the care and its results during the dying phase and has been used at the PCU since its introduction in November 2001.14 The LCP consists of three parts. In the first part, the current situation and needs of the patient and their relatives are assessed and the ‘‘care plan’’ is discussed (initial assessment). In the case of palliative sedation, this initial assessment consists of an intensive presedation consultation in which the current situation, the impossibility for symptom relief, the intention of the treatment, and the importance of saying goodbye are discussed in detail with both the patient and his relatives. When a patient suffers from a delirium or terminal restlessness, this initial assessment, at that moment, takes place with the relatives only. In the second part, a four-hour and a 12hour registration of the patient’s possible problems, and concerns of the relatives, is maintained. The latter is noted under the 12hour registration of the LCP goal ‘‘the needs of those attending the patient are accommodated.’’ The third part of the LCP is directed at the care after the patient is deceased.
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Participants Forty-five patients died after continuous palliative sedation at the PCU between October 2001 and October 2004. For all these patients, continuous deep sedation was deemed necessary because of the severity of the symptoms. The decision to use continuous deep sedation was always discussed with other caregivers, mostly in a multidisciplinary team meeting. The decision process followed a local guideline, similar to the recent Dutch national guideline of palliative sedation. The relatives of these 45 patients comprised the population in the current study. It is important to note that the information was gathered per patient and not per relative. On average, three or four relatives were present per patient.
Design and Procedure This study concerns a retrospective study using the notations in the multidisciplinary records of the first two parts of the LCP. The first part of the LCP was used to study with whom (patient, relatives) the sedation care plan had been discussed, and if the relatives had stated that they understood the care plan. Using the second part of the LCP, the 12-hour registration forms were used to analyze the spontaneous concerns expressed by the relatives. The clinical nurse specialist of the PCU (H.T.M.v.V.) and the medical oncologist working on the PCU (L.v.Z.) constructed a checklist of relevant topics, based on literature,8,12 clinical experience, and the prompts as formulated in the LCP. The spontaneous concerns expressed by the relatives could be divided into three main topic categories of concerns: concerns about the aim of the continuous palliative sedation, concerns about the patient’s possible suffering, and concerns about the well-being of the relatives themselves. As an extra check, all medical records were analyzed as well, and when necessary, additional information was noted down. Furthermore, data on refractory symptoms, demographics, duration of sedation, and used medications were collected. Permission of the Medical Ethics Committee was not requested, because the data consisted of registrations by the nurses obtained in the
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standard care, which did not influence the relatives and the patients.
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91% of the patients (n ¼ 41), an increase of the dosage was needed (median: 2 times).
Relatives
Statistical Analysis Descriptive analyses were performed by calculating medians and ranges in case of continuous data and frequencies in all other data. Sedations during which relatives did express concerns or not were compared with respect to patient characteristics (age, gender, number of refractory symptoms [1, 2, or 3], duration of the sedation period, the end dosage of midazolam, and the use of rescue sedative medication [yes/no]). One-way analysis of variance was used in case of continuous data; Fisher’s exact test was used for nominal data. All data were processed with the Statistical Package for Social Sciences (SPSS for Windows, Release 14.0, SPSS Inc., Chicago, IL).
The indication, goal, and expected course of continuous deep palliative sedation were discussed before the start of it with the relatives of all patients. In 67% of the sedations, the patient was involved as well, but in the other 33%, the severity of the terminal restlessness precluded this involvement. In those patients, therefore, the procedure could only be discussed with their relatives. All relatives stated that they understood the care plan and gave their consent to start continuous deep palliative sedation. In 23 patients (51%), the relatives expressed concerns about continuous deep palliative sedation in the period between the start of continuous deep palliative sedation and death. More than one concern could be expressed (Table 2).
Results
Concerns About the Aim of Continuous Palliative Sedation
Patients In Table 1, the characteristics of the 45 sedated patients are shown. The ratio of men to women was equal; the median age was 57 years and the median duration of continuous deep palliative sedation was 21 hours. The reasons for starting continuous deep palliative sedation were terminal restlessness (64%), dyspnea (44%), and/or pain (33%). Midazolam was the most commonly used drug to induce sedation, with a median dose at the start of 2 mg/hour, and a median dose at the end of 10 mg/hour. One patient was given clonazepam and three patients were given propofol. In Table 1 Patient and Sedation Characteristics (n ¼ 45) Male/female Age (median and range)
Relatives of 12 patients (27%) experienced concerns about the aim of the continuous deep palliative sedation after the start of it. For example, referrals to an earlier wish for euthanasia were made, or the frustration that euthanasia could not be initiated anymore was expressed. On the other hand, some relatives were concerned whether the sedation procedure was similar to euthanasia with respect to inducing death. In all cases, the concerns were handled by providing additional or repeated explanation and information.
Concerns About the Patient’s Possible Suffering Relatives of 13 patients (29%) expressed concerns regarding possible suffering in their
Duration of continuous palliative sedation (median and range)
22/23 57 years (27e89 years) 21 hours (2e114 hours)
Reasons for sedationa Terminal restlessness Dyspnea Pain
29/45 (64%) 20/45 (44%) 15/45 (33%)
Concerna
Use of midazolam Increase of dose of midazolam (median and range)
41 (91%) 2 times (0e6 times)
Concerns regarding the aim Concerns about possible suffering in a family member Concerns about the relatives themselves
Table 2 Frequencies of the Different Concerns Expressed During Continuous Palliative Sedation Number of Patients (n ¼ 45)
a
More than one reason possible.
a
More than one concern possible.
n (%) 12 (27) 13 (29) 8 (18)
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family member during the course of the continuous deep palliative sedation (e.g., see Table 3). Most of these concerns were resolved by explaining the nature of the symptoms that occurred during sedation, such as groaning. Other concerns in this category were solved by adjusting the medication, for example, in case of restlessness.
Concerns About the Well-Being of the Relatives Themselves Relatives of eight patients (18%) expressed feelings that the trajectory of sedation was very burdening for themselves. Some of these concerns regarded feelings of exhaustion because of sleep deprivation; others expressed Table 3 Some Examples of the Different Categories of Concerns Concerns Concerns regarding the aim
Concern about possible suffering in a family member
Concerns about the relatives themselves
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unbearable feelings of watching their family member die.
Sedations With and Without Expressed Concerns There were no significant differences in the patient’s age, gender, and the number of refractory symptoms for sedations during which relatives expressed concerns and sedations during which no concerns from relatives were reported (data not shown). The median duration of sedation was longer when concerns were expressed: 46 hours (range: 2e114 hours) vs. 19.5 hours (range: 3e87 hours) for sedations with and without concerns, respectively (P < 0.05). The end dosage of midazolam (if applicable) and the use of rescue sedative medication did not differ between the two groups of sedations (data not shown).
Example 1. Son talked about euthanasia: his mother would not have wanted this ‘‘suffering.’’ In fact, because of his mother’s condition, the start of a euthanasia procedure was no longer possible. 2. Relatives did not want their loved one ‘‘suffering’’ any longer by receiving sedatives and oxygen. Ultimately, they accepted the fact that the patient’s life could not be actively ended anymore. 1. A relative believed that the patient suffered because of repeated groaning, sonin-law wondered if medication could be increased. Relatives were constantly unsure about the extent of relief of suffering. 2. Relatives believed that the patient was short of breath. In fact, breathing was changed because of impending death. 1. Wife expressed that the trajectory was very burdensome and she hoped that it would not last much longer. 2. Relatives became very tired, they barely slept, because they wanted to witness the patient’s last breath.
Discussion This study shows that relatives express concerns regarding sedation in about half of the cancer patients for whom continuous palliative sedation is used at an acute PCU. When analyzing these spontaneously mentioned concerns, three main themes could be distinguished: concerns regarding the aim of the continuous palliative sedation, concerns regarding possible suffering of the patient, and concerns regarding the well-being of the relatives themselves. The relatively calm period after the start of continuous palliative sedation, which followed a possible hectic period in which the patient suffered from serious and refractory symptoms, may provide relatives with the opportunity to reflect on the decision that has been made. During this period, despite the dying family member suffering less than before, the relatives may be confronted with thoughts and feelings about the decision for continuous palliative sedation, and questions and concerns about it will be expressed. The fact that the relatives cannot communicate with their ill family members anymore may strengthen their possible doubts about the opinion of their family members regarding the decision to sedate and the level of symptom relief actually achieved. In fact, some signs that usually occur during the dying process, for example,
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groaning or altered breathing, may be interpreted by the relatives as waking up or the recurrence of symptoms, and, therefore, upset them. Furthermore, relatives may be upset when possible habituation to the medication dosage occurs, making them insecure about the achieved or achievable level of symptom relief in their ill family member. Also, relatives may not know the process of continuous palliative sedation, and by asking many questions, express their concerns, perhaps until some feeling of control is established. A result that should be considered closely is the referral of relatives to the practice of euthanasia with respect to the aim of the sedation in about a quarter of the studied sedations. On the one hand, some relatives were worried that previous euthanasia requests were not taken into account, whereas on the other hand, some other relatives were concerned whether the sedation was not in fact euthanasia. Relatives’ referrals to earlier euthanasia requests are in line with a recently published Dutch study by Rietjens et al.,15 stating that in 9% of sedation cases, a previous euthanasia request was made and not granted, largely because the time frame to complete the euthanasia procedure was deemed too short according to the treating physician. At our unit, decisions to start continuous palliative sedation followed a local guideline, similar to the Dutch national guideline from 2005, with respect to the diagnoses of refractory symptoms and an expected survival of maximal one to two weeks. However, although the two practices of sedation and euthanasia have different characteristics,16 for people who are not health care professionals, it may apparently be difficult to distinguish both practices. We, therefore, underline the importance of good communication and education about the practice of palliative sedation. When physicians and nurses realize the possible consequences of a sedation procedure for the relatives, they may become better oriented toward the needs of the relatives. When comparing the nature of the concerns that were expressed in the current study with the spontaneous remarks that were made in the study by Morita et al.,10 the themes that emerged were to some extent comparable. The wish for symptom relief and the wish to understand the patients’ suffering in the study by Morita
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et al. can be compared with the concerns expressed about the possible suffering of the dying family member in the current study. A parallel can be made with the perspectives of relatives of patients dying at an ICU. An extensive review resulting in several recommendations for end-of-life care at the ICU revealed a list of the 10 most important needs of the family members of critically ill patients.17 Three needs on this list, the need to be informed of the dying person’s changing condition, to understand what is being done to a patient and why, and to be assured of the patient’s comfort, appear to be related to the concerns regarding the possible suffering of the patient in our study. The need to be comforted and to ventilate emotions can be considered to be related to the concerns regarding the well-being of the relatives themselves. A study on satisfaction with end-of-life care at the ICU among relatives of deceased patients found that they were more often completely satisfied when the completeness of information provided by the ICU staff was rated as excellent.18 Effective communication between caregivers and relatives seems to be the key word. Although the current study was not undertaken at an ICU, the constant need for communication between the caregivers and relatives was underlined by the nature of the concerns that were expressed during the continuous palliative sedation. Proactively, repeating information or providing additional information could effectively resolve the expressed concerns. Before the start of continuous palliative sedation, the relatives need to be well informed about the signs that may occur during dying, the way the sedation will be monitored, and the actions taken by staff in case of recurrence of symptoms. Even more important, during the continuous palliative sedation, there is a clear need for continuity in specific support. The results of this study emphasize the importance of continuous monitoring of not only the patients’ symptoms, but also the concerns and needs of the relatives. Continuation of the use of the LCP excellently provides for this need.12,14,19 We explored possible differences in (patient) characteristics between sedations in which relatives did express concerns and those in which relatives did not. None of the characteristics differed significantly, except for the
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duration of the sedation. When the period of sedation until death lasted longer, relatives were more likely to express concerns. This seems logical when considering that a longer sedation period puts a heavier burden on the relatives and gives them more time to realize and express their concerns. For the health care professional involved with the family, this finding once again emphasizes the need for explicit information and education about the sedation process as well as paying extra attention to the relatives in case the duration of the sedation is long. A unique feature of this exploratory study is the fact that it took into account the concerns of the relatives that were expressed during the continuous palliative sedation. In previous studies about experiences of relatives, the relatives were contacted months to years after their family member had died, with the possibility of recall bias.9,10 Several limitations should be mentioned as well. One limitation of the current study was its retrospective design. It, therefore, is not certain whether all documentation of the expressed concerns was exhaustive and correct. Another limitation was the fact that the registration forms from which the data were gathered did not have research as their purpose. A third limitation was the fact that the information was not gathered per relative but per patient. It would be very interesting to further study the concerns and needs from the relatives’ perspectives, thus monitoring concerns and needs per relative (e.g., partner or child) instead of per patient. Lastly, the sample size of 45 patients was modest. An important aspect to bear in mind is that the population of patients at the studied PCU is relatively young. The median age of the patients was 57 years and is comparable with other studies performed in academic PCUs.7,16 As a consequence of conducting the study within an academic center, the provided care may be more specialized and the encountered problems of the patients admitted to the unit may be more complicated. In fact, the main purpose for admittance to the PCU is to provide symptom control and to discharge them after this has been reached. When it becomes clear that discharge is not possible anymore, this may come unexpected. Furthermore, the dying of relatively young
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patients may put an extra heavy burden on the relatives. In conclusion, the relatives of dying patients who receive continuous palliative sedation express concerns in about half of the cases. These concerns are regarding the aim of continuous palliative sedation, the possible suffering of the patient, and/or the well-being of themselves. Availability of nursing guidance and clear process documentation, as used in the LCP, are crucial and indispensable in providing care for patients, as well as relatives, during continuous palliative sedation. This is more important when the period of sedation is long.
References 1. Morita T, Christof Mu¨ller-Busch H, van Heest F Sedation in palliative careddefinition and terminology. Available at: http://www.eapcnet.org/forum/ default.asp?category¼Definition%20and%20Termin ology. 2. Chiu TY, Hu WY, Lue BH, Cheng SY, Chen CY. Sedation for refractory symptoms of terminal cancer patients in Taiwan. J Pain Symptom Manage 2001; 21:467e472. 3. Fainsinger RL, Waller A, Bercovici M, et al. A multicentre international study of sedation for uncontrolled symptoms in terminally ill patients. Palliat Med 2000;14:257e265. 4. Muller-Busch HC, Andres I, Jehser T. Sedation in palliative careda critical analysis of 7 years experience. BMC Palliat Care 2003;2:2. 5. 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. 6. Rietjens JA, van Zuylen L, van Veluw H, et al. Palliative sedation in a specialized unit for acute palliative care in a cancer hospital: comparing patients dying with and without palliative sedation. J Pain Symptom Manage 2008;36:228e234. 7. Morita T, Tsuneto S, Shima Y. Proposed definitions for terminal sedation. Lancet 2001;358: 335e336. 8. World Health Organization. Definition of palliative care. Available at: http://www.who.int/cancer/palliative/definition/en. 9. Morita T, Ikenaga M, Adachi I, et al. Family experience with palliative sedation therapy for terminally ill cancer patients. J Pain Symptom Manage 2004;28:557e565.
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10. Morita T, Ikenaga M, Adachi I, et al. Concerns of family members of patients receiving palliative sedation therapy. Support Care Cancer 2004;12: 885e889.
15. Rietjens J, van Delden J, OnwutenkaPhilipsen B, et al. Continuous deep sedation for patients nearing death in the Netherlands: descriptive study. BMJ 2008;336:810e813.
11. Rietjens JA, Hauser J, van der Heide A, Emanuel L. Having a difficult time leaving: experiences and attitudes of nurses with palliative sedation. Palliat Med 2007;21:643e649.
16. Rietjens J, van Delden J, van der Heide A, et al. Terminal sedation and euthanasia. Arch Intern Med 2006;166:749e753.
12. Ellershaw J, Wilkinson S. Care of the dying: A pathway to excellence. New York: Oxford University Press, 2003. 13. Swart SJ, van Veluw H, van Zuylen L, Gambles M, Ellershaw J. Dutch experiences with the Liverpool care pathway. Eur J Palliat Care 2006;13:156e159. 14. Veerbeek L, van Zuylen L, Gambles M, et al. Audit of the Liverpool care pathway for the dying patient in a Dutch cancer hospital. J Palliat Care 2006;22:305e308.
17. Truog RD, Cist AF, Brackett SE, et al. Recommendations for end-of-life care in the intensive care unit: The Ethics Committee of the Society of Critical Care Medicine. Crit Care Med 2001;29: 2332e2348. 18. Heyland DK, Rocker GM, O’Callaghan CJ, Dodek PM, Cook DJ. Dying in the ICU: perspectives of family members. Chest 2003;124:392e397. 19. van Veluw H, Schrofer Y, Swart S, van Zuylen L. Een zorgpad voor de stervensfase [Use of the LCP at the palliative care unit of a University hospital (Dutch)]. Tijdschrift voor verpleegkundigen. (J Dutch Nursing) 2004;2:45e48.
Journal of Pain and Symptom Management
Vol. 38 No. 3 September 2009
Clinical Note
Exploration of Concerns of Relatives During Continuous Palliative Sedation of Their Family Members with Cancer Silvia van Dooren, PhD, Hetty T.M. van Veluw, RN, Lia van Zuylen, MD, PhD, Judith A.C. Rietjens, PhD, Jan Passchier, PhD, and Carin C.D. van der Rijt, MD, PhD Department of Medical Psychology and Psychotherapy (S.v.D., J.P.), Department of Medical Oncology, Daniel den Hoed Cancer Center (S.v.D., H.T.M.v.V., C.C.D.v.d.R.), Department of Medical Oncology (L.v.Z.), and Department of Public Health (J.A.C.R.), Erasmus MC, Rotterdam, The Netherlands
Abstract Data on the experiences of relatives during continuous palliative sedation are scarce. Because these relatives may be the ones most closely involved with the patient, it is important to evaluate the possible burdens that they experience. We aimed to explore and evaluate concerns of relatives during continuous palliative sedation of their family members admitted to an acute palliative care unit. Through retrospective multidisciplinary record research, we obtained data on concerns of the relatives during the period that continuous palliative sedation took place. From October 2001 to October 2004, 45 patients died after starting continuous palliative sedation. In 51% of the cases, the relatives expressed concerns after starting the therapy. Concerns could be distinguished into three main themes: concerns about the aim of continuous palliative sedation (27%), concerns related to the well-being of the patient (29%), and concerns related to the well-being of relatives themselves (18%). Patient and sedation characteristics did not differ significantly between sedations in which relatives did and did not express concerns, except for the duration of the sedation. The median duration of the continuous palliative sedation when concerns were expressed was 46 hours, compared with 19.5 hours when this was not the case (P < 0.05). Both the nature and extent of the concerns suggest that relatives are in need of continuous information and professional guidance during continuous palliative sedation of their family members. Availability of caregiver guidance and clear process documentation are crucial and indispensable in providing this. J Pain Symptom Manage 2009;38:452e459. Ó 2009 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Palliative care, sedation, family, symptom control, palliative care unit
Introduction Address correspondence to: Silvia van Dooren, PhD, Department of Medical Psychology and Psychotherapy, Room cf-208, Erasmus MC, P.O. Box 2040, 3000 CA, Rotterdam, The Netherlands. E-mail: s.vandooren@ erasmusmc.nl Accepted for publication: November 10, 2008. Ó 2009 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.
By recommendation of the European Association for Palliative Care, palliative sedation is defined as the use of sedative medications to relieve intolerable and refractory suffering by a reduction in patient consciousness.1 The aim of 0885-3924/09/$esee front matter doi:10.1016/j.jpainsymman.2008.11.011
Vol. 38 No. 3 September 2009 Relatives’ Concerns During Continuous Palliative Sedation
this sedation is to alleviate patient’s suffering from refractory symptoms (i.e., severe symptoms for which treatment is no longer possible, or for which treatment will lead to unacceptable side effects). The most commonly reported refractory symptoms, and therefore, reasons for palliative sedation are terminal restlessness, dyspnea, and pain.2e6 Following the subcategories proposed by Morita et al. (2001),7 distinctions can be made in the degree and duration of sedation, and the pharmacological properties of the sedative. In the current study, all patients received primary continuous deep sedation.7 More insight into the sedation characteristics in the patients in the current study is given in Rietjens et al.6 Professionals working in palliative care stress the importance of good care for the relatives of the patient, because they are the ones who are often present during the last period of the patient’s life, and obviously, the most closely involved and concerned with the patient. The World Health Organization definition of palliative care incorporates providing a support system to help the family cope during the patient’s illness and during their own bereavement.8 The family is almost always involved in the decision-making process regarding palliative sedation. An extensive interview study among physicians in The Netherlands showed that the decision to use sedation was almost always discussed with the relatives of the patient (93%); in 25% of cases, the patient was considered incompetent or obtunded.5 In the study by Rietjens et al. in the palliative care unit (PCU) at our cancer hospital, the decision to use sedation was discussed with relatives in 89% of the cases.6 With regard to experiences of relatives of patients who receive continuous deep palliative sedation, studies appear to be scarce. Morita et al. (2004)9 studied the concerns and needs relatives had regarding continuous palliative sedation. In a study among 185 bereaved relatives on satisfaction and distress levels regarding palliative sedation in their family member, 78% expressed some level of satisfaction (ranging between slightly satisfied and completely satisfied). Twenty-five percent of the relatives reported that they had felt ‘‘very distressed’’ or ‘‘distressed’’ during the period of sedation. The relatives, however, were contacted a minimum of two years after the
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family member’s death, which implies recall bias as a limitation of this study. The authors adopted this time frame on purpose, because of the possible emotional burden that would have been placed on the relatives in case of an earlier approach.9 Another publication from the same study focused on the spontaneous comments that the relatives put in the questionnaire.10 The relatives reported that they had experienced feelings of guilt, helplessness, and physical and emotional exhaustion during the dying phase. They had desired symptom relief for their family member, wished to communicate with the family member before sedation began, wanted to understand their family member’s suffering, and wanted their family member to be treated with dignity. The authors concluded that clinicians need to be aware of these themes as being important for the relatives. They need to reassure the relatives and give sufficient information on the situation regarding the dying family member. A qualitative study exploring nurses’ experiences with palliative sedation in an American PCU and an American intensive care unit (ICU) reported that, next to the patient’s suffering, the distress experienced by the family was a reason for the use of palliative sedation. Furthermore, palliative sedation was considered not only as a positive contribution to the patient’s quality of dying but also as a positive contribution to the experience of the relatives; seeing their family member die while sedated offered them a sense of peace and closure after a difficult period of suffering.11 Information on the concerns and needs of relatives of patients who receive palliative sedation is of prominent importance to health care professionals. Based on more insight into the concerns of the relatives during the sedation process of their loved one, health care professionals can provide tailored information and support to the relatives during this difficult time in their lives. We aimed to explore and evaluate concerns of relatives during the use of continuous deep palliative sedation until death in their family member. An important advantage of our study is that the concerns were noted while the continuous deep palliative sedation was still ongoing, without recall bias. Furthermore, we explored if there were
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differences in patient characteristics when relatives did express concerns compared with when they did not.
Materials and Methods Palliative Care Unit At the time of this study, the specialized acute PCU of the Erasmus MC-Daniel den Hoed Cancer Center consisted of 11 beds. The main purpose of this PCU is to provide symptom control for cancer patients in an advanced stage of their disease, and to discharge them after adequate levels of symptom control have been reached. Because patients admitted to this PCU usually suffer from a wide variety of severe symptoms, daily multidisciplinary meetings are held with nurses, medical oncologists, an anesthesiologist, a psychiatrist, and a neurologist. In a number of cases, discharge is not possible because, during admission, the dying process sets in. Specialized care during the dying process is provided for within the framework of the Dutch version of the Liverpool Care of the Dying Pathway (LCP).12,13 The LCP is a standardized registration method to monitor the care and its results during the dying phase and has been used at the PCU since its introduction in November 2001.14 The LCP consists of three parts. In the first part, the current situation and needs of the patient and their relatives are assessed and the ‘‘care plan’’ is discussed (initial assessment). In the case of palliative sedation, this initial assessment consists of an intensive presedation consultation in which the current situation, the impossibility for symptom relief, the intention of the treatment, and the importance of saying goodbye are discussed in detail with both the patient and his relatives. When a patient suffers from a delirium or terminal restlessness, this initial assessment, at that moment, takes place with the relatives only. In the second part, a four-hour and a 12hour registration of the patient’s possible problems, and concerns of the relatives, is maintained. The latter is noted under the 12hour registration of the LCP goal ‘‘the needs of those attending the patient are accommodated.’’ The third part of the LCP is directed at the care after the patient is deceased.
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Participants Forty-five patients died after continuous palliative sedation at the PCU between October 2001 and October 2004. For all these patients, continuous deep sedation was deemed necessary because of the severity of the symptoms. The decision to use continuous deep sedation was always discussed with other caregivers, mostly in a multidisciplinary team meeting. The decision process followed a local guideline, similar to the recent Dutch national guideline of palliative sedation. The relatives of these 45 patients comprised the population in the current study. It is important to note that the information was gathered per patient and not per relative. On average, three or four relatives were present per patient.
Design and Procedure This study concerns a retrospective study using the notations in the multidisciplinary records of the first two parts of the LCP. The first part of the LCP was used to study with whom (patient, relatives) the sedation care plan had been discussed, and if the relatives had stated that they understood the care plan. Using the second part of the LCP, the 12-hour registration forms were used to analyze the spontaneous concerns expressed by the relatives. The clinical nurse specialist of the PCU (H.T.M.v.V.) and the medical oncologist working on the PCU (L.v.Z.) constructed a checklist of relevant topics, based on literature,8,12 clinical experience, and the prompts as formulated in the LCP. The spontaneous concerns expressed by the relatives could be divided into three main topic categories of concerns: concerns about the aim of the continuous palliative sedation, concerns about the patient’s possible suffering, and concerns about the well-being of the relatives themselves. As an extra check, all medical records were analyzed as well, and when necessary, additional information was noted down. Furthermore, data on refractory symptoms, demographics, duration of sedation, and used medications were collected. Permission of the Medical Ethics Committee was not requested, because the data consisted of registrations by the nurses obtained in the
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standard care, which did not influence the relatives and the patients.
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91% of the patients (n ¼ 41), an increase of the dosage was needed (median: 2 times).
Relatives
Statistical Analysis Descriptive analyses were performed by calculating medians and ranges in case of continuous data and frequencies in all other data. Sedations during which relatives did express concerns or not were compared with respect to patient characteristics (age, gender, number of refractory symptoms [1, 2, or 3], duration of the sedation period, the end dosage of midazolam, and the use of rescue sedative medication [yes/no]). One-way analysis of variance was used in case of continuous data; Fisher’s exact test was used for nominal data. All data were processed with the Statistical Package for Social Sciences (SPSS for Windows, Release 14.0, SPSS Inc., Chicago, IL).
The indication, goal, and expected course of continuous deep palliative sedation were discussed before the start of it with the relatives of all patients. In 67% of the sedations, the patient was involved as well, but in the other 33%, the severity of the terminal restlessness precluded this involvement. In those patients, therefore, the procedure could only be discussed with their relatives. All relatives stated that they understood the care plan and gave their consent to start continuous deep palliative sedation. In 23 patients (51%), the relatives expressed concerns about continuous deep palliative sedation in the period between the start of continuous deep palliative sedation and death. More than one concern could be expressed (Table 2).
Results
Concerns About the Aim of Continuous Palliative Sedation
Patients In Table 1, the characteristics of the 45 sedated patients are shown. The ratio of men to women was equal; the median age was 57 years and the median duration of continuous deep palliative sedation was 21 hours. The reasons for starting continuous deep palliative sedation were terminal restlessness (64%), dyspnea (44%), and/or pain (33%). Midazolam was the most commonly used drug to induce sedation, with a median dose at the start of 2 mg/hour, and a median dose at the end of 10 mg/hour. One patient was given clonazepam and three patients were given propofol. In Table 1 Patient and Sedation Characteristics (n ¼ 45) Male/female Age (median and range)
Relatives of 12 patients (27%) experienced concerns about the aim of the continuous deep palliative sedation after the start of it. For example, referrals to an earlier wish for euthanasia were made, or the frustration that euthanasia could not be initiated anymore was expressed. On the other hand, some relatives were concerned whether the sedation procedure was similar to euthanasia with respect to inducing death. In all cases, the concerns were handled by providing additional or repeated explanation and information.
Concerns About the Patient’s Possible Suffering Relatives of 13 patients (29%) expressed concerns regarding possible suffering in their
Duration of continuous palliative sedation (median and range)
22/23 57 years (27e89 years) 21 hours (2e114 hours)
Reasons for sedationa Terminal restlessness Dyspnea Pain
29/45 (64%) 20/45 (44%) 15/45 (33%)
Concerna
Use of midazolam Increase of dose of midazolam (median and range)
41 (91%) 2 times (0e6 times)
Concerns regarding the aim Concerns about possible suffering in a family member Concerns about the relatives themselves
Table 2 Frequencies of the Different Concerns Expressed During Continuous Palliative Sedation Number of Patients (n ¼ 45)
a
More than one reason possible.
a
More than one concern possible.
n (%) 12 (27) 13 (29) 8 (18)
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family member during the course of the continuous deep palliative sedation (e.g., see Table 3). Most of these concerns were resolved by explaining the nature of the symptoms that occurred during sedation, such as groaning. Other concerns in this category were solved by adjusting the medication, for example, in case of restlessness.
Concerns About the Well-Being of the Relatives Themselves Relatives of eight patients (18%) expressed feelings that the trajectory of sedation was very burdening for themselves. Some of these concerns regarded feelings of exhaustion because of sleep deprivation; others expressed Table 3 Some Examples of the Different Categories of Concerns Concerns Concerns regarding the aim
Concern about possible suffering in a family member
Concerns about the relatives themselves
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unbearable feelings of watching their family member die.
Sedations With and Without Expressed Concerns There were no significant differences in the patient’s age, gender, and the number of refractory symptoms for sedations during which relatives expressed concerns and sedations during which no concerns from relatives were reported (data not shown). The median duration of sedation was longer when concerns were expressed: 46 hours (range: 2e114 hours) vs. 19.5 hours (range: 3e87 hours) for sedations with and without concerns, respectively (P < 0.05). The end dosage of midazolam (if applicable) and the use of rescue sedative medication did not differ between the two groups of sedations (data not shown).
Example 1. Son talked about euthanasia: his mother would not have wanted this ‘‘suffering.’’ In fact, because of his mother’s condition, the start of a euthanasia procedure was no longer possible. 2. Relatives did not want their loved one ‘‘suffering’’ any longer by receiving sedatives and oxygen. Ultimately, they accepted the fact that the patient’s life could not be actively ended anymore. 1. A relative believed that the patient suffered because of repeated groaning, sonin-law wondered if medication could be increased. Relatives were constantly unsure about the extent of relief of suffering. 2. Relatives believed that the patient was short of breath. In fact, breathing was changed because of impending death. 1. Wife expressed that the trajectory was very burdensome and she hoped that it would not last much longer. 2. Relatives became very tired, they barely slept, because they wanted to witness the patient’s last breath.
Discussion This study shows that relatives express concerns regarding sedation in about half of the cancer patients for whom continuous palliative sedation is used at an acute PCU. When analyzing these spontaneously mentioned concerns, three main themes could be distinguished: concerns regarding the aim of the continuous palliative sedation, concerns regarding possible suffering of the patient, and concerns regarding the well-being of the relatives themselves. The relatively calm period after the start of continuous palliative sedation, which followed a possible hectic period in which the patient suffered from serious and refractory symptoms, may provide relatives with the opportunity to reflect on the decision that has been made. During this period, despite the dying family member suffering less than before, the relatives may be confronted with thoughts and feelings about the decision for continuous palliative sedation, and questions and concerns about it will be expressed. The fact that the relatives cannot communicate with their ill family members anymore may strengthen their possible doubts about the opinion of their family members regarding the decision to sedate and the level of symptom relief actually achieved. In fact, some signs that usually occur during the dying process, for example,
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groaning or altered breathing, may be interpreted by the relatives as waking up or the recurrence of symptoms, and, therefore, upset them. Furthermore, relatives may be upset when possible habituation to the medication dosage occurs, making them insecure about the achieved or achievable level of symptom relief in their ill family member. Also, relatives may not know the process of continuous palliative sedation, and by asking many questions, express their concerns, perhaps until some feeling of control is established. A result that should be considered closely is the referral of relatives to the practice of euthanasia with respect to the aim of the sedation in about a quarter of the studied sedations. On the one hand, some relatives were worried that previous euthanasia requests were not taken into account, whereas on the other hand, some other relatives were concerned whether the sedation was not in fact euthanasia. Relatives’ referrals to earlier euthanasia requests are in line with a recently published Dutch study by Rietjens et al.,15 stating that in 9% of sedation cases, a previous euthanasia request was made and not granted, largely because the time frame to complete the euthanasia procedure was deemed too short according to the treating physician. At our unit, decisions to start continuous palliative sedation followed a local guideline, similar to the Dutch national guideline from 2005, with respect to the diagnoses of refractory symptoms and an expected survival of maximal one to two weeks. However, although the two practices of sedation and euthanasia have different characteristics,16 for people who are not health care professionals, it may apparently be difficult to distinguish both practices. We, therefore, underline the importance of good communication and education about the practice of palliative sedation. When physicians and nurses realize the possible consequences of a sedation procedure for the relatives, they may become better oriented toward the needs of the relatives. When comparing the nature of the concerns that were expressed in the current study with the spontaneous remarks that were made in the study by Morita et al.,10 the themes that emerged were to some extent comparable. The wish for symptom relief and the wish to understand the patients’ suffering in the study by Morita
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et al. can be compared with the concerns expressed about the possible suffering of the dying family member in the current study. A parallel can be made with the perspectives of relatives of patients dying at an ICU. An extensive review resulting in several recommendations for end-of-life care at the ICU revealed a list of the 10 most important needs of the family members of critically ill patients.17 Three needs on this list, the need to be informed of the dying person’s changing condition, to understand what is being done to a patient and why, and to be assured of the patient’s comfort, appear to be related to the concerns regarding the possible suffering of the patient in our study. The need to be comforted and to ventilate emotions can be considered to be related to the concerns regarding the well-being of the relatives themselves. A study on satisfaction with end-of-life care at the ICU among relatives of deceased patients found that they were more often completely satisfied when the completeness of information provided by the ICU staff was rated as excellent.18 Effective communication between caregivers and relatives seems to be the key word. Although the current study was not undertaken at an ICU, the constant need for communication between the caregivers and relatives was underlined by the nature of the concerns that were expressed during the continuous palliative sedation. Proactively, repeating information or providing additional information could effectively resolve the expressed concerns. Before the start of continuous palliative sedation, the relatives need to be well informed about the signs that may occur during dying, the way the sedation will be monitored, and the actions taken by staff in case of recurrence of symptoms. Even more important, during the continuous palliative sedation, there is a clear need for continuity in specific support. The results of this study emphasize the importance of continuous monitoring of not only the patients’ symptoms, but also the concerns and needs of the relatives. Continuation of the use of the LCP excellently provides for this need.12,14,19 We explored possible differences in (patient) characteristics between sedations in which relatives did express concerns and those in which relatives did not. None of the characteristics differed significantly, except for the
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duration of the sedation. When the period of sedation until death lasted longer, relatives were more likely to express concerns. This seems logical when considering that a longer sedation period puts a heavier burden on the relatives and gives them more time to realize and express their concerns. For the health care professional involved with the family, this finding once again emphasizes the need for explicit information and education about the sedation process as well as paying extra attention to the relatives in case the duration of the sedation is long. A unique feature of this exploratory study is the fact that it took into account the concerns of the relatives that were expressed during the continuous palliative sedation. In previous studies about experiences of relatives, the relatives were contacted months to years after their family member had died, with the possibility of recall bias.9,10 Several limitations should be mentioned as well. One limitation of the current study was its retrospective design. It, therefore, is not certain whether all documentation of the expressed concerns was exhaustive and correct. Another limitation was the fact that the registration forms from which the data were gathered did not have research as their purpose. A third limitation was the fact that the information was not gathered per relative but per patient. It would be very interesting to further study the concerns and needs from the relatives’ perspectives, thus monitoring concerns and needs per relative (e.g., partner or child) instead of per patient. Lastly, the sample size of 45 patients was modest. An important aspect to bear in mind is that the population of patients at the studied PCU is relatively young. The median age of the patients was 57 years and is comparable with other studies performed in academic PCUs.7,16 As a consequence of conducting the study within an academic center, the provided care may be more specialized and the encountered problems of the patients admitted to the unit may be more complicated. In fact, the main purpose for admittance to the PCU is to provide symptom control and to discharge them after this has been reached. When it becomes clear that discharge is not possible anymore, this may come unexpected. Furthermore, the dying of relatively young
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patients may put an extra heavy burden on the relatives. In conclusion, the relatives of dying patients who receive continuous palliative sedation express concerns in about half of the cases. These concerns are regarding the aim of continuous palliative sedation, the possible suffering of the patient, and/or the well-being of themselves. Availability of nursing guidance and clear process documentation, as used in the LCP, are crucial and indispensable in providing care for patients, as well as relatives, during continuous palliative sedation. This is more important when the period of sedation is long.
References 1. Morita T, Christof Mu¨ller-Busch H, van Heest F Sedation in palliative careddefinition and terminology. Available at: http://www.eapcnet.org/forum/ default.asp?category¼Definition%20and%20Termin ology. 2. Chiu TY, Hu WY, Lue BH, Cheng SY, Chen CY. Sedation for refractory symptoms of terminal cancer patients in Taiwan. J Pain Symptom Manage 2001; 21:467e472. 3. Fainsinger RL, Waller A, Bercovici M, et al. A multicentre international study of sedation for uncontrolled symptoms in terminally ill patients. Palliat Med 2000;14:257e265. 4. Muller-Busch HC, Andres I, Jehser T. Sedation in palliative careda critical analysis of 7 years experience. BMC Palliat Care 2003;2:2. 5. 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. 6. Rietjens JA, van Zuylen L, van Veluw H, et al. Palliative sedation in a specialized unit for acute palliative care in a cancer hospital: comparing patients dying with and without palliative sedation. J Pain Symptom Manage 2008;36:228e234. 7. Morita T, Tsuneto S, Shima Y. Proposed definitions for terminal sedation. Lancet 2001;358: 335e336. 8. World Health Organization. Definition of palliative care. Available at: http://www.who.int/cancer/palliative/definition/en. 9. Morita T, Ikenaga M, Adachi I, et al. Family experience with palliative sedation therapy for terminally ill cancer patients. J Pain Symptom Manage 2004;28:557e565.
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10. Morita T, Ikenaga M, Adachi I, et al. Concerns of family members of patients receiving palliative sedation therapy. Support Care Cancer 2004;12: 885e889.
15. Rietjens J, van Delden J, OnwutenkaPhilipsen B, et al. Continuous deep sedation for patients nearing death in the Netherlands: descriptive study. BMJ 2008;336:810e813.
11. Rietjens JA, Hauser J, van der Heide A, Emanuel L. Having a difficult time leaving: experiences and attitudes of nurses with palliative sedation. Palliat Med 2007;21:643e649.
16. Rietjens J, van Delden J, van der Heide A, et al. Terminal sedation and euthanasia. Arch Intern Med 2006;166:749e753.
12. Ellershaw J, Wilkinson S. Care of the dying: A pathway to excellence. New York: Oxford University Press, 2003. 13. Swart SJ, van Veluw H, van Zuylen L, Gambles M, Ellershaw J. Dutch experiences with the Liverpool care pathway. Eur J Palliat Care 2006;13:156e159. 14. Veerbeek L, van Zuylen L, Gambles M, et al. Audit of the Liverpool care pathway for the dying patient in a Dutch cancer hospital. J Palliat Care 2006;22:305e308.
17. Truog RD, Cist AF, Brackett SE, et al. Recommendations for end-of-life care in the intensive care unit: The Ethics Committee of the Society of Critical Care Medicine. Crit Care Med 2001;29: 2332e2348. 18. Heyland DK, Rocker GM, O’Callaghan CJ, Dodek PM, Cook DJ. Dying in the ICU: perspectives of family members. Chest 2003;124:392e397. 19. van Veluw H, Schrofer Y, Swart S, van Zuylen L. Een zorgpad voor de stervensfase [Use of the LCP at the palliative care unit of a University hospital (Dutch)]. Tijdschrift voor verpleegkundigen. (J Dutch Nursing) 2004;2:45e48.