The Practice of Continuous Sedation Until Death in Nursing Homes in Flanders, Belgium: A Nationwide Study Sam Rys, RN, MSc, PhD,* Freddy Mortier, MA, PhD,†‡ Luc Deliens, MA, MSc, PhD,†§ and Johan Bilsen, RN, MSc, PhD*

OBJECTIVES: To investigate how continuous sedation until death (CSD), the reduction or removal of consciousness of an incurably ill individual until death to relieve refractory suffering, is practiced in nursing homes. DESIGN: Nationwide cross-sectional retrospective survey. SETTING: Nursing homes in Flanders, Belgium. PARTICIPANTS: Palliative care nurses (N = 660) in all nursing homes in Flanders. MEASUREMENTS: Nurse reports of their most recent patient treated with CSD. RESULTS: The response rate was 65.5%, and 249 nurses reported a case of CSD (57.6%). Most individuals had cancer (33.6%) or dementia (32.8%); lacked competence (65.7%); and had severe pain (71.2%), fatigue (62.3%), loss of dignity (59%), anxiety (58.4%), and longing for death (58.4%). Intractable pain (70.7%) and physical exhaustion (63.9%) were the most decisive symptoms for initiating CSD. Life expectancy was generally limited to 1 week (64.9%), and 88.4% had insufficient nutritional oral intake before the start of CSD. CSD was rarely combined with artificial nutrition or hydration. Benzodiazepines were most frequently used (84.8%). Overall, according to the reporting nurses, CSD provided adequate symptom relief and good quality of dying. CONCLUSION: In nursing homes, CSD is typically used in residents with cancer or dementia and severe, intractable physical symptoms. Lack of competence prevents most residents from being involved in the decision-making process, which illustrates the importance of advance care

From the *Mental Health and Wellbeing Research Group, Vrije Universiteit Brussel; †End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Brussels; ‡Bioethics Institute Ghent, Ghent University, Ghent, Belgium; and §Department of Public and Occupational Health, EMGO Institute for Health and Care Research, Expertise Centre for Palliative Care, VU University Medical Center, Amsterdam, the Netherlands. Address correspondence to Sam Rys, Faculty of Medicine and Pharmacy, Mental Health and Wellbeing Research Group, Vrije Universiteit Brussel, Laarbeeklaan 103, 1090 Brussel, Belgium. E-mail: [email protected] DOI: 10.1111/jgs.13073

JAGS 62:1869–1876, 2014 © 2014, Copyright the Authors Journal compilation © 2014, The American Geriatrics Society

planning in nursing homes in Flanders. J Am Geriatr Soc 62:1869–1876, 2014.

Key words: palliative sedation; continuous sedation until death; nursing homes

I

n the last stages of life, people may suffer greatly from symptoms that do not respond to conventional symptom treatment. In such situations, the practice of sedating the individual to relieve distress is being applied regularly, as a last resort, to control refractory suffering but not to hasten death. In Belgium, as in many countries, this treatment is considered normal medical practice—unlike euthanasia. Most palliative care professionals refer to this treatment as “palliative sedation.” Many guidelines on palliative sedation have been published during the past decade.1–6 These guidelines distinguish two types of palliative sedation: intermittent and continuous. The current study focused on the latter type (continuous sedation until death (CSD)), the act of reducing or removing the consciousness of an incurably ill individual until death. CSD is frequently used in a variety of care settings and countries.7 In Flanders (the Dutch-speaking region of Belgium), the incidence of CSD has increased dramatically in all care settings in recent years.8 In Flemish nursing homes, the rate of CSD has tripled, from 2.9% of all deaths in 2001 to 9.4% in 2007.9 These epidemiological incidence studies did not collect extensive data on the practice of CSD, because they were designed to estimate the incidence rates of all possible end-of-life practices in all care settings, so they do not provide sufficient information to assess thoroughly how CSD is practiced in this type of care setting. Furthermore, they included only a small number of cases of CSD in nursing homes. Other research focusing on the practice of CSD in nursing homes has reported on the general attitudes of Flemish nursing home clinicians toward CSD but was not based on an analysis of actual cases.10 The majority of extensive studies of concrete cases of CSD have been conducted in high care settings such as

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palliative care units or hospices,11 and the findings of such studies may not be comparable with those of low care settings with limited infrastructure and palliative expertise, such as nursing homes. Only a few Dutch studies—with an exclusive focus on CSD—have reported on the practice of CSD in nursing homes,12–14 but given the significant differences in population and the organization of care between the Netherlands and Belgium, the findings of these studies may not apply to nursing homes in Flanders. Therefore, the aim of this study was to investigate how CSD is practiced in nursing homes in Flanders, in particular, to describe resident characteristics, the decisionmaking process before initiating CSD, the performance of CSD, and perceived quality of dying.

METHODS Study Design and Setting In 2012, a nationwide cross-sectional retrospective survey was conducted in all nursing homes in Flanders that provide skilled nursing care (n = 660). Nursing homes in Flanders are institutions that provide care to elderly people with activity of daily living disabilities but who do not need continuous medical supervision. Medical care is usually provided through visits of the nursing home resident’s regular general practitioner. All nursing homes are legally required to designate a palliative care nurse who—together with a coordinating physician—is responsible for the development and implementation of palliative care in the institution (e.g., by organizing training in palliative care or offering advice and support in individual palliative care situations).15 Generally, these nurses have followed an extensive training program in palliative care (usually resulting in a degree). The treating physician is medically responsible for the administration of CSD: deciding to initiate CSD, prescribing the sedative drugs, and determining the respective dosages. Following the physician’s orders, nurses usually administer the prescribed drugs. Nurses are legally responsible for assessing and monitoring the resident’s condition (e.g., symptom assessment, vital signs) and reporting any relevant information to the treating physician. Hence, treating physicians usually involve nurses in the decision-making process in CSD (regarding the initiation of CSD or changes in dose). In this respect, research has demonstrated that nurses are more frequently involved in end-of-life decision-making in nursing homes than in home care or hospital settings.16 Given their function in nursing homes, palliative care nurses are likely to be involved in the administration of CSD for nursing home residents. Because of their permanent presence in nursing homes (in contrast to the treating physicians), they are best informed about the condition and care of such individuals. Therefore, a questionnaire was addressed to the palliative care nurse in each nursing home in Flanders regarding the resident most recently treated with CSD. Addresses of the nursing homes were obtained from the Flemish Ministry of Health. The anonymity of the survey was guaranteed through a careful mailing procedure. Each questionnaire was provided with a unique code linked to an address of a nursing home to be able to follow up the response. The researchers kept a list with all

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the codes and corresponding addresses. The researchers sent the questionnaires to the nursing homes, which were returned to a lawyer after completion. This lawyer, who did not have access to the list with codes and addresses, informed the researchers weekly about the response to the survey by e-mailing an overview of the codes of the returned questionnaires to the researchers. The lawyer subsequently removed the codes from the returned questionnaires so that the researchers could send reminders to nonresponders. Three reminders were sent. After data collection was completed, the researchers collected the codeless questionnaires. This way, neither the lawyer nor the researchers were able to link names or addresses to the filled-in questionnaires. To improve the response rate, a letter of recommendation that the Federation of Palliative Care Flanders and all nursing home umbrella organizations (public, Catholic, commercial) signed was enclosed with the questionnaire. The ethical committee of the Universitair Ziekenhuis Brussel approved the research protocol (reference 2012/ 063).

Questionnaire The questionnaire was based on a questionnaire used in a similar study conducted in the Netherlands among physicians and nurses working in a variety of care settings17 and adapted for nurses working in nursing homes in Flanders. The adapted version of the questionnaire was first discussed with palliative care experts, and five palliative care nurses working in a variety of nursing homes subsequently tested it. The questionnaire consisted of 54 closedended questions. First, the nurses were asked whether they had ever taken care of a nursing home resident who had been continuously sedated until death. Then data on their most recent case of CSD were collected: participant characteristics (clinical and sociodemographic characteristics), the decision-making process (e.g., involvement of individual or relatives), the performance of CSD (e.g., drugs used, depth of sedation), and effects of CSD (e.g., symptom relief, quality of dying). The nurses were asked to obtain the information from the individual’s medical record—as far as possible. Although nurses generally have easy access to resident records in nursing homes, the extent to which nurses used the resident’s record to fill in the questionnaire was not ascertained. The second part of the questionnaire included questions assessing the characteristics of the responding nurses, including their age and sex, the type of nursing home where they were employed, and their experience in end-of-life care and training in palliative care. They were able to add further comments or explanations at the end of the questionnaire.

Analysis Descriptive analysis was performed using SPSS 20.0 (SPSS Corp., Chicago, IL) and StatXact 6 (Cytel Studio, Cambridge, MA). Proportions were calculated for categorical data and means and medians for continuous data. Associations were tested using the Fisher exact test, t-test, and Mann-Whitney U test. For all tests, P < .05 was considered significant.

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CONTINUOUS SEDATION UNTIL DEATH IN NURSING HOMES

RESULTS In total, 432 nurses (representing an equal number of nursing homes) completed the questionnaire, a response rate of 65.5%. A comparison of the characteristics of the nursing homes of the responding nurses with all nursing homes in Flanders in terms of size (> or 50 Sex Male Female Work experience, years mean  standard deviation Number of dying individuals cared for annually, median (interquartile range) Training in palliative care No Yes, occasional Yes, degree Type of nursing home Public Private Catholic Private non-Catholic a

Experience with CSD, n = 249

14 64 106 60

(5.7) (26.2) (43.4) (24.6)

No Experience with CSD, n = 183

12 47 47 38

(6.6) (25.7) (86) (20.8)

Total, N = 432

26 26 45 98

P-Valuea

(6.1) (111) (192) (22.9)

.81

.27

40 (16.2) 207 (83.8) 21.2  8.8 10 (12)

22 (12.1) 160 (87.9) 20.9  8.9 10 (12)

62 (14.5) 367 (85.5) 21.1  8.8 10 (12)

17 (6.9) 60 (24.3) 170 (68.8)

13 (7.3) 41 (22.9) 125 (69.8)

30 (7.0) 101 (23.7) 295 (69.2)

>.99

98 (39.8) 109 (44.3) 39 (15.9)

37 (67) 90 (49.7) 24 (13.3)

165 (38.6) 199 (46.6) 63 (14.8)

.51

.70 .88

Calculated using Fisher exact test, t-test, and Mann-Whitney U test. Missing cases: age (n = 5), sex (n = 3), work experience (n = 6), number of dying individuals cared for (n = 15), type nursing home (n = 5), training palliative care (n = 6). CSD = continuous sedation until death.

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Table 2. Characteristics of Reported Individuals Receiving Continuous Sedation Until Death (CSD) (N = 249) Age

The practice of continuous sedation until death in nursing homes in Flanders, Belgium: a nationwide study.

To investigate how continuous sedation until death (CSD), the reduction or removal of consciousness of an incurably ill individual until death to reli...
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