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Objective: Comparing characteristics of a favorable sedation course during palliative sedation to a less favorable course based on the reports Dutch physicians and nurses., Results: Cases identified as having a favorable sedation course less often concerned a male patient (P = .019 nurses' cases), reached the intended sedation depth significantly quicker (P < .05 both nurses and physicians' cases), reached a deeper level of sedation (P = .015 physicians' cases), and had a shorter total duration of sedation compared (P < .001 physicians' cases) to patients with a less favorable sedation course., Conclusions: A favorable course during palliative sedation seems more probable when health care professionals report on a (relatively) shorter time to reach the required depth of sedation and when a deeper level of sedation can be obtained., (© The Author(s) 2013.)

Background: Patients with dementia frequently do not receive adequate palliative care which may relate to poor understanding of the natural course of dementia. We hypothesized that understanding that dementia is a progressive and terminal disease is fundamental to a focus on comfort in dementia, and examined how family and professional caregivers' understanding of the nature of the disease was associated with patients' comfort during the dying process., Methods: We enrolled 372 nursing home patients from 28 facilities in The Netherlands in a prospective observational study (2007 to 2010). We studied both the families and the physicians (73) of 161 patients. Understanding referred to families' comprehension of complications, prognosis, having been counseled on these, and perception of dementia as "a disease you can die from" (5-point agreement scale) at baseline. Physicians reported on this perception, prognosis and having counseled on this. Staff-assessed comfort with the End-of-Life in Dementia - Comfort Assessment in Dying (EOLD-CAD) scale. Associations between understanding and comfort were assessed with generalized estimating equations, structural equation modeling, and mediator analyses., Results: A family's perception of dementia as "a disease you can die from" predicted higher patient comfort during the dying process (adjusted coefficient -0.8, 95% confidence interval (CI): -1.5; -0.06 point increment disagreement). Family and physician combined perceptions (-0.9, CI: -1.5; -0.2; 9-point scale) were also predictive, including in less advanced dementia. Forty-three percent of the families perceived dementia as a disease you can die from (agreed completely, partly); 94% of physicians did. The association between combined perception and higher comfort was mediated by the families' reporting of a good relationship with the patient and physicians' perception that good care was provided in the last week., Conclusions: Awareness of the terminal nature of dementia may improve patient comfort at the end of life. Educating families on the nature of dementia may be an important part of advance care planning.

Background: The European population is rapidly ageing, resulting in increasing numbers of older people dying in long-term care facilities. There is an urgent need for palliative care in long-term care facilities., Aim: The aim of this study was to systematically review the literature on palliative care research in long-term care facilities in Europe with respect to how the palliative care populations were described, and to determine the study designs and patient outcome measures utilized., Methods: We used a systematic literature review. The search strategy included searches of PubMed, Embase and PsychINFO databases from 2000 up to May 2010, using search terms related to 'palliative care' and 'end-of-life care' combined with search terms related to 'long-term care'. We selected articles that reported studies on patient outcome data of palliative care populations residing in a long-term care facility in Europe., Results: This review demonstrated that there are few, and mainly descriptive, European studies on palliative care research in long-term care facilities. Fourteen studies were retained in the review, of which eight were conducted in the Netherlands. None of these studies described their study population specifically as a palliative care or end-of-life care population. Retrospective and prospective designs were applied using many different measurement instruments. Most instruments were proxy ratings. Symptom (management) was the most frequently measured outcome., Conclusion: To improve future research on palliative care in long-term care facilities, agreement on what can be considered as palliative care in long-term care facilities and, the availability of well-developed and tested measurement instruments is needed to provide more evidence, and to make future research more comparable.

Objective: To evaluate the practice of continuous palliative sedation after the introduction of a national guideline., Design: Investigation by questionnaire., Method: In 2008, 1580 physicians were asked to fill out a questionnaire regarding the last patient for whom they had prescribed continuous sedation until death., Results: The response was 38% (n = 606). Eighty-two percent of the respondents were aware of the national guideline. Dyspnoea, pain and physical exhaustion were most often mentioned as the decisive indications for continuous sedation. The decision to use sedation was discussed with all mentally competent patients; in 18% of these cases, the patients had only been informed of the decision. Life expectancy at the start of continuous sedation was estimated to be less than 2 weeks in 97% of the cases. In 14% of the cases, the physicians felt pressured to start the sedation, predominantly by patients and relatives. Physicians were present at the start of sedation in 81% of the cases. Midazolam was used to induce sedation in 92%, and 41% of the physicians estimated that continuous sedation had hastened death to some extent. Most physicians believed that their patients' symptoms had been adequately relieved by continuous sedation, that the relatives were satisfied and that the quality of dying had been good., Conclusion: Continuous sedation practice in the Netherlands largely reflects the recommendations of the national guideline. Issues needing further attention are the pressure felt by physicians to start continuous sedation, as well as the possible life-shortening effect of continuous sedation as perceived by some of the physicians.

Purpose: To test if care to relief suffering in patients with dementia who become ill with pneumonia is improving, we compared treatments in cohorts of patients with dementia and pneumonia a decade apart., Participants and Methods: We studied 61 nursing homes in The Netherlands between 1996-1998 and 54 nursing homes between 2006-2007, 53 of which had been in the earlier cohort. In 1996-1998, 706 patients with pneumonia and dementia were prospectively enrolled by 201 physicians and in 2006-2007, 72 patients by 69 physicians. Data collected included treatment, physician and patient characteristics, outcome, and additionally, in the 2006-2007 cohort only, physicians' perception of changes in treatment they generally provide., Results: The frequency of providing antibiotics was similar: 79% in the recent cohort versus 77% ten years earlier (p = 0.63) as was oral antibiotic treatment (91% of those receiving antibiotics versus 88%; p = 0.44). Treatment to relieve symptoms was provided more frequently in the more recent cohort. For example, antipyretics (54% versus 34%; p = 0.001), oxygen (29% versus 13%; p < 0.001), and opiates (22% versus 10%; p = 0.003). Differences were not explained by different case mix. Half of physicians (49%) stated they generally treat to relieve symptoms more frequently than before., Conclusions: Symptom relief to Dutch patients with dementia and pneumonia is provided more frequently than a decade ago while the rate of treatment with antibiotics is unchanged. Further studies in The Netherlands and elsewhere are needed to detect if this is a general trend.

Dementia patients frequently die after a pneumonia or prolonged intake problems. Maintaining comfort is a goal of palliative care in end-stage dementia. To compare discomfort in dementia patients dying after a pneumonia with patients dying after intake problems, and to assess associations with treatment, we combined 2 Dutch prospective studies. We selected 559 pneumonia patients and 166 patients with intake problems who had no pneumonia. Discomfort was observed with the Discomfort Scale - Dementia of Alzheimer Type (DS-DAT). Linear regression was performed with the dependent DS-DAT levels shortly before death in 314 patients who died within 2 weeks. Compared with discomfort in patients with intake problems, unadjusted and adjusted discomfort in patients with pneumonia was higher both at t 0 and before death. In adjusted analyses, antibiotic treatment (mostly oral) was associated with less discomfort before death (beta -1.1, CI -2.2 - -0.03), while invasive rehydration (received by only 8 patients) was associated with more discomfort (beta 3.5, CI 0.6 - 6.3). Death from pneumonia may cause great suffering in dementia patients. If confirmed in a study with different case mix and treatments, antibiotics may be used to decrease discomfort even when death is imminent.

Objectives: The aim of this study was to identify the direct causes of death and to evaluate the presence of burdensome symptoms in the last two days of life of terminally ill nursing home (NH) patients., Methods: Prospective study of patients with a maximum life-expectancy of six weeks in 16 nursing homes representative for The Netherlands (n = 463). Symptoms were measured after death in conscious patients with the Edmonton Symptom Assessment Scale (ESAS) and the Resident Assessment Instrument Minimum Data-Set Palliative Care (RAI MDS-PC draft 1.8). Direct causes of death were assessed in all patients., Results: Most patients died from pneumonia, renal failure or dehydration. Loss of consciousness was common. The prevalence of burdensome symptom(s) at 48 and 24 hours before death was 51.3 and 28.4%, respectively., Conclusion: In practice, it appears that, for many patients, the last days of life are spent unconscious or conscious with one or more burdensome symptom(s), which suggests the potential for improvement of symptom management.

Purpose: We wanted to explore factors that influence Dutch and US physician treatment decisions when nursing home patients with dementia become acutely ill with pneumonia., Methods: Using a qualitative semistructured interview study design, we collected data from 12 physicians in the Netherlands and 12 physicians in North Carolina who care for nursing home patients. Our main outcome measures were perceptions of influential factors that determine physician treatment decisions regarding care of demented patients who develop pneumonia., Results: Several themes emerged from the study. First, physicians viewed their patient care roles differently. Dutch physicians assumed active, primary responsibility for treatment decisions, whereas US physicians were more passive and deferential to family preferences, even in cases when they considered families' wishes for care as inappropriate. These family wishes were a second theme. US physicians reported a perceived sense of threat from families as influencing the decision to treat more aggressively, whereas Dutch physicians revealed a predisposition to treat based on what they perceived was in the best interest of the patient. The third theme was the process of decision making whereby Dutch physicians based decisions on an intimate knowledge of the patient, and American physicians reported limited knowledge of their nursing home patients as a result of lack of contact time., Conclusion: Physician-perceived care roles regarding treatment decisions are influenced by contextual differences in physician training and health care delivery in the United States and the Netherlands. These results are relevant to the debate about optimal care for patients with poor quality of life who lack decision-making capacity.

This pilot study was carried out to determine to what extent patients admitted to palliative care units (PCUs) in The Netherlands maintained good levels of individual quality of life (QoL), and to what extent response shift - a measure of adaptation - influenced QoL at the end of life. Two components of response shift were measured: reconceptualization (exchanging important areas of life) and value change (changing the perceived importance of important areas of life). Twenty patients admitted to PCUs were interviewed at one week, three weeks, and five weeks after admission. Results show that individual QoL was high and remained stable over the three measurement points. The individual QoL of patients who did not reconceptualize or did not change values was higher than the individual QoL of patients who did. The current pilot data need to be corroborated with data from additional respondents.

Unlabelled: The aim of this study was to assess the Palliative care Outcome Scale (POS) for terminally ill nursing home (NH) patients in the Netherlands., Methods: A prospective observational study of patients with a life-expectancy of six weeks or less in 16 Dutch NHs. NH staff rated the patient characteristics and measured palliative care with the POS, including items on physical, psychosocial, informational, spiritual and practical aspects., Results: POS nonscores (not applicable; unknown) were mainly found in the psychosocial and spiritual domains, particularly in patients with dementia. Mean scores for non-demented patients and patients with dementia were favourable for the majority of the POS items., Conclusion: According to the NH staff, fairly good quality care was provided, but the psychosocial and spiritual aspects of care need to be addressed more in the last days of the dying NH patient's life. The results indicate that the POS is an appropriate instrument to assess not only cancer patients, but also non-cancer and (moderately) severely demented patients.

Although efforts have been made to define optimal terminal care in palliative care units (PCUs), comprehensive longitudinal evaluations of care outcomes in PCUs at the end of life are scarce. In this study, changes in functional status (assistance needed for walking, and toilet use) and symptoms (pain, nausea, shortness of breath, depression, and anxiety) were assessed in all patients (n=355) admitted to 10 PCUs in Dutch nursing homes. Outcomes were measured at 24 hours, 48 hours, one week, and two weeks before death, and at PCU admission. Results show that functional status deteriorated from admission to one week before death, but most symptoms did not worsen in the last three weeks before death. Decreases in pain, anxiety, and nausea were observed. The results suggest that the care provided in the PCUs stabilized the symptom levels. Patients who die between two and four weeks appeared to have more favorable symptom change patterns than patients who die within two weeks, which supports the recommendation to admit eligible patients in earlier phases of their disease. Limitations include the use of proxy measures and some forms of selection bias, which may lead to underestimation of symptom levels.

Minimal care requirements were drafted for units for short-term palliative care for terminally ill patients in nursing homes in The Netherlands. The requirements were evaluated by (a) determining to what extent ten units were able to meet these requirements and (b) which facilitators and barriers influenced the implementation of the units. Staff members of the ten units were interviewed using a semi-structured interview protocol six months after the units were established. The results show that on average 69 percent of the requirements were met. Requirements for expertise development were best met (77 percent), and requirements for personnel and team were met least (58 percent). Facilitators for meeting the requirements included development of new housing or renovation, being part of a care provider network, and onetime subsidies. Barriers included lack of funds and shortage of staff. Further development of the requirements based on the results of this study by a committee of experts was advised.

Purpose: A focus on palliative care for residents with dementia is much more common in Dutch nursing homes than in the United States. We compared treatment and mortality in U.S. and Dutch nursing home residents with lower respiratory infections (LRI), which are often the immediate cause of death in dementia., Design and Methods: We studied two prospective cohorts--a study of pneumonia (n = 706) conducted in 61 psychogeriatric nursing homes throughout the Netherlands and 701 subjects with likely dementia from a study of LRIs in 36 nursing homes in Missouri., Results: Nursing home residents with dementia were more often treated without antibiotics in the Netherlands (23%) than in Missouri (15%). Indicators of severe illness operate in opposite directions: more severe illness is associated with antibiotic treatment in the United States, but with palliative treatment without antibiotics in the Netherlands., Implications: Our findings are consistent with others in indicating problems with transition to palliative care for U.S. nursing home residents with dementia.

Objectives: To assess suffering in demented nursing home patients with pneumonia treated with antibiotics or without antibiotics. This study should provide the first empirical data on whether pneumonia is a "friend" or an "enemy" of demented patients and promote a debate on appropriate palliative care., Design: Prospective cohort study., Setting: Psychogeriatric wards of 61 nursing homes in the Netherlands., Participants: Six hundred sixty-two demented patients with pneumonia treated with (77%) or without (23%) antibiotics., Measurements: Using an observational scale (Discomfort Scale-Dementia of Alzheimer Type), discomfort was assessed at the time of the pneumonia treatment decision and periodically thereafter for 3 months or until death. (Thirty-nine percent of patients treated with antibiotics and 93% of patients treated without antibiotics died within 3 months.) Physicians also offered a retrospective judgment of discomfort 2 weeks before the treatment decision. In addition, pneumonia symptoms were assessed at baseline and on follow-up. Linear regression was performed with discomfort shortly before death as an outcome., Results: A peak in discomfort was observed at baseline. Compared with surviving patients treated with antibiotics, the level of discomfort was generally higher in patients in whom antibiotic treatment was withheld and in nonsurvivors. However, these same patients had more discomfort before the pneumonia. Breathing problems were most prominent. Shortly before death from pneumonia, discomfort increased. Discomfort was higher shortly before death when pneumonia was the final cause of death than with death from other causes., Conclusion: Irrespective of antibiotic treatment, pneumonia causes substantial suffering in demented patients. Adequate symptomatic treatment deserves priority attention.

Background: The clinical impact of risk score use in end-of-life settings is unknown, with reports limited to technical properties.Methods: We conducted a mixed-methods study to evaluate clinical impact of a validated mortality risk score aimed at informing prognosis and supporting clinicians in decision-making in dementia patients with pneumonia. We performed a trial (n = 69) with physician-reported outcomes referring to the score's aims. Subsequently, physician focus group discussions were planned to better understand barriers to clinical impact, and we surveyed families (n = 50) and nurses practicing in nursing homes (n = 29). We finally consulted with experts and key persons for implementation.Results: Most (71%) physicians who used the score considered it useful, but mainly for its learning effects. Families were never informed of numerical risk estimates. Two focus group discussions revealed a reluctance to use a numerical approach, and physicians found that outcomes conditional on antibiotic treatment were inadequate to support decision-making. Nurses varied in their perceived role in informing families. Most families (88%) wished to be informed, preferring a numerical (43%), verbalized (35%), or other approach (18%) or had no preference (5%). Revising the score, we added an ethical framework for decision-making to acknowledge its complexity, an explanatory note addressing barriers related to physicians’ attitudes, and a nurses’ form.Conclusion: The combined quantitative and qualitative studies elicited: substantial barriers to a numerical approach to physicians’ end-of-life decision-making; crucial information for revisions and further score development; and a need for implementation strategies that focus on education. [ABSTRACT FROM PUBLISHER]

Background Nursing homes (NHs) are less well studied than hospices or hospitals as a setting for terminal care. For more targeted palliative care, more information is needed about the patient characteristics, symptoms, direct causes and underlying diseases, and incidence of terminally ill NH patients. These aspects are examined in this study. Methods Prospective observational cohort study in 16 NHs representative of the Netherlands. All long-term care patients assessed by an NH physician to have a life expectancy of 6 weeks or less were enrolled in our study. Results The terminal disease phase was marked with symptoms of low fluid and food intake, general weakness, and respiratory problems or dyspnea. Direct causes of these conditions were diseases of the respiratory system (mainly pneumonia) and general disorders (eg, cachexia). The 2 main underlying diseases of the terminal phase were mental and behavioral disorders and diseases of the circulatory system. Cancer was the underlying disease in only 12% of the patients. Patients with cancer showed a different pattern of symptoms than those without cancer. Per 100 beds per year, 34 NH patients entered the terminal phase. Most patients (82.9%) died within 7 days of inclusion. Conclusions For patients without cancer in Dutch NHs, the terminal disease phase is difficult to predict, and once diagnosed, patient survival time is short. A better identification of the symptom burden might improve the prognostication of life expectancy in elderly patients. [ABSTRACT FROM AUTHOR]

Abstract: Context: Long-term care (LTC) settings have become a significant site for end-of-life care; consequently, instruments that assess the quality of dying and care may be useful in these settings. Objectives: To evaluate the content of available measurement instruments to assess the quality of dying and care when dying. Methods: Qualitative content analysis to categorize items as structure of care, process of care, satisfaction with health care (the first three representing quality of care and its evaluation), quality of dying, or patient factors. Results: Instruments that measure mostly quality of care and its evaluation are the Family Perception of Physician-Family Caregiver Communication, End-of-Life in Dementia (EOLD) Satisfaction With Care, Family Perception of Care Scale, Toolkit of Instruments to Measure End-of-Life Care after-death bereaved family member interview (nursing home version), and the Family Assessment of Treatment at the End-of-Life Short version. Instruments measuring quality of dying are the EOLD-Comfort Assessment in Dying, EOLD-Symptom Management, Mini-Suffering State Examination, and Palliative Care Outcome Scale. The Quality of Dying in Long-Term Care measures care and dying. The Minimum Data Set-Palliative Care measures mostly dying and patient factors. The instruments differ in dementia specificity, time of administration, and respondent. Conclusion: Instruments that assess quality when dying differ in several ways and most do not measure a single construct, which is relevant to guiding and evaluating care. Comparing psychometric properties and usefulness of instruments that measure similar constructs is the next step in determining which are best suited for use in LTC. [Copyright &y& Elsevier]

Objective: To examine long-term mortality and its determinants in nursing home residents with dementia diagnosed with a lower respiratory tract infection (LRI). Setting and Patients: US (Missouri) nursing home residents (541) and Dutch residents (403) with dementia who were treated with antibiotics for an LRI. Methods: Prospective studies of nursing home–acquired LRI in the US (Missouri) and in the Netherlands. Measurements included demographics, indicators of acute illness, general health condition, intake problems, and comorbid disease. Six-month mortality rates were calculated and Cox proportional hazards models were developed for mortality up to 2 years after diagnosis. Results: Six-month mortality was 48.8% among Dutch residents and 36.4% among US residents. After multivariable adjustment, Dutch nationality was not associated with higher long-term mortality. Variables most strongly associated with long-term mortality were activity of daily living dependency and male gender. Other variables associated with outcome were diverse: respiratory difficulty, age, dehydration, congestive heart failure, decreased alertness, decubitus ulcers, Parkinson disease, weight loss/poor nutrition, and pulse rate. Conclusion: LRI is followed by substantial mortality in the months after diagnosis, indicating high frailty of nursing home residents with dementia who develop LRI. A variety of patient characteristics, including many not directly related to LRI, were consistently associated with long-term mortality in two cohorts with differing illness severity. The results are relevant for informing families, evaluating poor long-term survival in the context of care and treatment, and balancing the potential burdens and benefits of care. [Copyright &y& Elsevier]