H. Roeline W. Pasman

Symptoms and problems in the end-of-life phase of high-grade glioma patients.

Despite multimodal treatment, it is not possible to cure high-grade glioma (HGG) patients. Therefore, the aim of treatment is not only to prolong life, but also to prevent deterioration of health-related quality of life as much as possible. When the patients condition declines and no further tumor treatment seems realistic, patients in the Netherlands are often referred to a primary care physician for end-of-life care. This end-of-life phase has not been studied adequately yet. The purpose of this study was to explore specific problems and needs experienced in the end-of-life phase of patients with HGG. We retrospectively examined the files of 55 patients who received treatment in our outpatient clinic and died between January 2005 and August 2008. The clinical nurse specialist in neuro-oncology maintained contact on a regular basis with (relatives of) HGG patients once tumor treatment for recurrence was no longer given. She systematically asked for signs and symptoms. The majority of the patients experienced loss of consciousness and difficulty with swallowing, often arising in the week before death. Seizures occurred in nearly half of the patients in the end-of-life phase and more specifically in one-third of the patients in the week before dying. Other common symptoms reported in the end-of-life phase are progressive neurological deficits, incontinence, progressive cognitive deficits, and headache. Our study demonstrates that HGG patients, unlike the general cancer population, have specific symptoms in the end-of-life phase. Further research is needed in order to develop specific palliative care guidelines for these patients.

Quality indicators for palliative care: a systematic review.

Research has demonstrated a greater understanding of the needs of terminally ill patients and their families, but it also has been found that the palliative care is not optimal. Because of a lack of quality indicators in palliative care, the quality of the care is often not assessed. The aim of this systematic review was to give an overview of published quality indicators for palliative care in all patient groups and settings, to determine whether these quality indicators cover all domains of palliative care, to describe the different types of quality indicators, and to determine the methodological characteristics of the quality indicators. Relevant studies were identified by searching computerized databases up to December 2007. Publications describing the development process or characteristics of quality indicators for palliative care were selected by two reviewers independently. An additional selection criterion was that numerators and denominators were either defined or could be deduced from the descriptions. The data extraction involved the general description and type of the quality indicator, target population, and applicable setting. We identified 650 publications, of which 16 met the inclusion criteria. These publications described eight sets of quality indicators. These sets contained 142 overlapping quality indicators, covering all but one domain (cultural aspects) of palliative care. Most quality indicators referred to the outcomes or processes of palliative care. The methodological characteristics of the quality indicators varied considerably. We conclude that a substantial number of quality indicators for palliative care are available, but most have not been described in detail. More detailed methodological specifications are needed to accurately monitor the quality of palliative care.

End-of-Life Decisions: A Cross-National Study of Treatment Preference Discussions and Surrogate Decision-Maker Appointments

Background Making treatment decisions in anticipation of possible future incapacity is an important part of patient participation in end-of-life decision-making. This study estimates and compares the prevalence of GP-patient end-of-life treatment discussions and patients’ appointment of surrogate decision-makers in Italy, Spain, Belgium and the Netherlands and examines associated factors. Methods A cross-sectional, retrospective survey was conducted with representative GP networks in four countries. GPs recorded the health and care characteristics in the last three months of life of 4,396 patients who died non-suddenly. Prevalences were estimated and logistic regressions were used to examine between country differences and country-specific associated patient and care factors. Results GP-patient discussion of treatment preferences occurred for 10%, 7%, 25% and 47% of Italian, Spanish, Belgian and of Dutch patients respectively. Furthermore, 6%, 5%, 16% and 29% of Italian, Spanish, Belgian and Dutch patients had a surrogate decision-maker. Despite some country-specific differences, previous GP-patient discussion of primary diagnosis, more frequent GP contact, GP provision of palliative care, the importance of palliative care as a treatment aim and place of death were positively associated with preference discussions or surrogate appointments. A diagnosis of dementia was negatively associated with preference discussions and surrogate appointments. Conclusions The study revealed a higher prevalence of treatment preference discussions and surrogate appointments in the two northern compared to the two southern European countries. Factors associated with preference discussions and surrogate appointments suggest that delaying diagnosis discussions impedes anticipatory planning, whereas early preference discussions, particularly for dementia patients, and the provision of palliative care encourage participation.

Congruence between patients’ preferred and perceived participation in medical decision-making: a review of the literature

BackgroundPatients are increasingly expected and asked to be involved in health care decisions. In this decision-making process, preferences for participation are important. In this systematic review we aim to provide an overview the literature related to the congruence between patients’ preferences and their perceived participation in medical decision-making. We also explore the direction of mismatched and outline factors associated with congruence.MethodsA systematic review was performed on patient participation in medical decision-making. Medline, PsycINFO, CINAHL, EMBASE and the Cochrane Library databases up to September 2012, were searched and all studies were rigorously critically appraised. In total 44 papers were included, they sampled contained 52 different patient samples.ResultsMean of congruence between preference for and perceived participation in decision-making was 60% (49 and 70 representing 25th and 75th percentiles). If no congruence was found, of 36 patient samples most patients preferred more involvement and of 9 patient samples most patients preferred less involvement. Factors associated with preferences the most investigated were age and educational level. Younger patients preferred more often an active or shared role as did higher educated patients.ConclusionThis review suggests that a similar approach to all patients is not likely to meet patients’ wishes, since preferences for participation vary among patients. Health care professionals should be sensitive to patients individual preferences and communicate about patients’ participation wishes on a regular basis during their illness trajectory.

Discomfort in dementia patients dying from pneumonia and its relief by antibiotics.

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.

A New Set of Quality Indicators for Palliative Care: Process and Results of the Development Trajectory

CONTEXT In some countries (the United States in particular), quality indicators for palliative care have already been developed. However, these quality indicators often cover one specific setting or target group, for example, palliative cancer care or palliative home care. OBJECTIVES This article describes the development and initial testing of a set of quality indicators for palliative care, applicable for all settings in which palliative care is being provided for adult patients in The Netherlands. METHODS AND RESULTS In the first phase of the project, an inventory was made of existing relevant quality indicators. Most quality indicators focused on the process or outcome of palliative care, and quality indicators for the structure of palliative care were rare. Most of the existing quality indicators fall within the domain of physical care, and very few concern the social and spirituals domains of palliative care. In the second phase, a new draft set of quality indicators was developed. In addition to the previous inventory of existing indicators, interviews with patients, relatives, and caregivers provided input for the development of the draft set. Drafts of the set were tested among experts. In the third phase, the feasibility and usability of a draft set was established in 14 Dutch care organizations providing palliative care. CONCLUSION As a result of these phases, a set of quality indicators for palliative care has been developed, consisting of 33 indicators for palliative patient care and 10 indicators for support for relatives before and/or after the patients death.

Decision-making capacity and communication about care of older people during their last three months of life

BackgroundLimited decision-making capacity (DMC) of older people affects their abilities to communicate about their preferences regarding end-of-life care. In an advance directive (AD) people can write down preferences for (non)treatment or appoint a proxy as a representative in (non)treatment choices in case of limited DMC.The aim is to study limited DMC during the end of life and compare the background, (satisfaction with) care and communication characteristics of people with and without limited DMC. Furthermore, the aim is to describe patient proxies’ opinions about experiences with the use of (appointed proxy) ADs.MethodsUsing a questionnaire, data were collected from proxies of participants of a representative sample of the Longitudinal Aging Study Amsterdam (n=168) and a purposive sample of the Advance Directive cohort study (n=184). Differences between groups (with and without limited DMC, and/or with and without AD) were tested with chi-square tests, using a level of significance of p < 0.05.ResultsAt a month before death 27% of people had limited DMC; this increased to 67% of people having limited DMC in the last week of life. The care received was in accordance with the patient’s preferences for the majority of older people, although less often for people who had limited DMC for more than a week. The majority of the proxies were satisfied with the communication between physician and the patient and them, regardless of DMC of the patient. Of people with an AD, a small majority of relatives indicated that the AD had been of additional value. Finally, no differences were found in the role of the relative and the satisfaction with this role between people with and without a proxy AD.ConclusionsAlthough relatives have positive experiences with ADs, our study does not provide strong evidence that (proxy) ADs are very influential in the last phase of life. They can best be seen as a tool for advance care planning.

International Variation in Place of Death of Older People Who Died From Dementia in 14 European and non-European Countries

OBJECTIVES The objective of this study was to examine variation in place of death of older people dying from dementia in countries across 4 continents. DESIGN Study of death certificate data. METHODS We included deaths of older (65 + years) people whose underlying cause of death was a dementia-related disease (ICD-10: F01, F02, F03, G30) in Belgium, the Netherlands, England, Wales, France, Italy, Spain, Czech Republic, Hungary, New Zealand, United States, Canada, Mexico and South Korea. We examined associations between place of death and sociodemographic factors, social support, and residential and health care system factors. RESULTS Overall, 4.8% of all deaths were from a dementia-related disease, ranging from 0.4% in Mexico to 6.9% in Canada. Of those deaths, the proportion occurring in hospital varied from 1.6% in the Netherlands to 73.6% in South Korea. When controlling for potential confounders, hospital death was more likely for men, those younger than 80, and those married or living in a region with a higher availability of long-term care beds, although this could not be concluded for each country. Hospital death was least likely in the Netherlands compared with other countries. CONCLUSIONS Place of death of older people who died from a dementia-related disease differs substantially between countries, which might point to organizational differences in end-of-life care provision. Increasing the availability of long-term care beds might be important to reduce the number of hospital deaths, while focusing specialized end-of-life care services on married people or those aged 65 to 79 might be crucial for achieving home death. However, proper end-of-life care needs to be ensured in hospitals, should this be the most appropriate end-of-life care setting.

Forgoing artificial nutrition and hydration in nursing home patients with dementia: patients, decision making, and participants.

ObjectiveThe purpose of this study is to investigate the characteristics of patients for whom it is decided to forgo artificial nutrition and hydration (ANH) and characteristics of the ANH decision-making process. We conducted an observational study with the use of written questionnaires. For 178 nursing home patients with dementia, the treating nursing home physician (NHP), a family member, and a nurse filled out a questionnaire directly after the decision was made to forgo ANH. ResultsWe found that most patients had severe dementia and two thirds had an acute illness. Advance care planning had taken place in 68% of the cases. In two thirds of the cases, the primary aim in forgoing ANH was to avoid unnecessary prolongation of life; and nurses seemed to have less influence on the decision-making process than NHPs and family members. Almost all respondents evaluated the decision-making process as “good” or “adequate.” Dissatisfaction was felt when the decision had to be made under the pressure of time constraint. ConclusionsOn the basis of these results, we recommend that discussions that include NHPs, family members, and nurses concerning decisions about possible future situations be held on a regular basis. This will form the basis for the difficult ANH decision and will probably reduce the pressure of time constraint.

The end-of-life phase of high-grade glioma patients: a systematic review

BackgroundHigh-grade gliomas (HGG) are rare and incurable; yet, these neoplasms result in a disproportionate share of cancer morbidity and mortality. Treatment of HGG patients is directed not merely towards prolonging life but also towards quality of life, which becomes the major goal in the end of life (EOL). The latter has received increasing attention over the last decade.MethodsWe reviewed the literature related to the EOL phase of HGG patients from 1966 up to April 2012. Articles were retrieved from PubMed, Embase, Cinahl, PsycINFO and Cochrane database. We then selected papers for analysis using pre-determined inclusion criteria and subtracted information on the topics of interest.ResultsThe search yielded 695 articles, of which 17 were classified eligible for analysis according to pre-defined inclusion criteria. Reviewed topics were symptoms and signs, quality of life and quality of dying, caregiver burden, organization and location of palliative care, supportive treatment, and EOL decision making. Nearly all identified studies were observational, with only two non-randomized intervention studies. Symptom burden is high in the EOL phase and affects the quality of life of both patient and carer. Palliative care services are more intensively used compared to other cancer patients. Cognitive deficits increase as the disease progresses, hampering communication and decision making.ConclusionThe EOL phase of HGG is substantially different from other patient groups, and more clinical studies in HGG on supportive medication, advance care planning and decision making are required. The organization of care, development of guidelines and interventions to decrease caregiver burden in the EOL phase are critical as well.