End-of-life decision-making in six European countries: descriptive study

Heide, Agnes van der; Deliens, Luc; Faisst, Karin; Nilstun, Tore; Norup, Michael; Paci, Euǵenio; Wal, Gerrit van der; Maas, P.J. van der

doi:10.1016/s0140-6736(03)14019-6

Cited by 563 publications

(503 citation statements)

References 19 publications

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“…Such critical decisions (CDs) may affect the time of death (hastening or postponing it), the place of death (home, hospital or nursing homes [NHs]), 1 and/or the manner in which the person will live his/her last days. 2 These decisions may involve admitting a patient to a hospital or a NH or withholding or withdrawing a treatment. In the case of advanced dementia, these decisions are complicated by the patient's incapacity and often by a lack of clear preferences.…”

Section: Introductionmentioning

confidence: 99%

Critical Decisions for Older People With Advanced Dementia: A Prospective Study in Long-Term Institutions and District Home Care

Toscani¹,

Steen²,

Finetti³

et al. 2015

Journal of the American Medical Directors Association

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Objective. To describe and compare the decisions critical for survival or quality of life (CDs) made for patients with advanced dementia in nursing homes (NHs) and home care (HC) services.Design. Prospective cohort study with a follow-up of 6 months.Setting. Lombardy Region (NHs) and Reggio-Emilia and Modena Districts (HC), Italy.Participants. Patients (496 total; 315 in NHs and 181 in HC) with advanced dementia (Functional Assessment Staging Tool score >7) and expected survival >2 weeks.Measurements. At baseline, the patients' demographic data, date of admission and of dementia diagnosis, type of dementia, main co-morbidities, presence of pressure sores, ongoing treatments, and current prescriptions were abstracted from clinical records. At baseline and every 15 days thereafter, information regarding the patients' general condition and CDs (deemed critical by the doctor or team) was collected via interview with the doctor. For each CD, the physician reported the problem that led to the decision, the decision that was eventually made, the purpose of the decision, whether the decision had been discussed with and/or communicated to the family, who made the final decision, whether the decision was maintained after one week, whether it corresponded to what the doctor would have judged appropriate, and the expected survival of the patient (≤15 days).Results. For 267 of the 496 patients (53.8%; 60.3% in NHs and 42.5% at home), 644 CDs were made; for 95 patients, more than one CD was made. The problems that led to a CD were mainly infections (respiratory tract and other infections; 46.6%, 300/644 CDs); nutritional/hydration problems (20.6%; 133 CDs) and the worsening of a pre-existing disease (9.3%; 60 CDs). The most frequent type of decision concerned the prescription of antibiotics (overall 41.1%, 265/644; among NH patients 44.6%, 218/488; among HC patients, 30.2%, 47/156). The decision to hospitalize the patient was more frequently reported for HC than NH patients (25.5% vs. 3.1%). The most frequent purposes of the CDs in both settings were reducing symptoms or suffering (more so in NHs; 81.1 vs. 57.0% in HC) and prolonging survival (NH 27.5%; HC 23.1%; multiple purposes were possible). For 26 decisions (3.8%), the purpose was to ease death or not to prolong life. Conclusions.Decisions critical for the survival or quality of life of patients with advanced dementia were made for approximately half of the patients during a 6-month time frame, and such decisions were made more frequently in NHs than in HC. HC patients were more frequently hospitalized, and a sizeable minority of these patients were treated with the goal of prolonging survival. Italian patients with advanced dementia may benefit from the implementation of 5 palliative care principles, and HC patients may benefit from the implementation of measures to avoid hospitalizing patients near the end of life.

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Section: Introductionmentioning

confidence: 99%

Critical Decisions for Older People With Advanced Dementia: A Prospective Study in Long-Term Institutions and District Home Care

Toscani¹,

Steen²,

Finetti³

et al. 2015

Journal of the American Medical Directors Association

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“…When this suffering becomes unbearable, patients may request the physician to hasten their death [2] or explicitly for euthanasia or physician-assisted suicide (EAS), even if it is not legal for physicians to perform this [1,14,18]. In most countries, it is currently illegal for physicians to grant such requests.…”

Section: Introductionmentioning

confidence: 99%

Requests for euthanasia: origin of suffering in ALS, heart failure, and cancer patients

et al. 2010

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In The Netherlands, relatively more patients (20%) with amyotrophic lateral sclerosis (ALS) die due to euthanasia or physician-assisted suicide (EAS) compared with patients with cancer (5%) or heart failure (0.5%). We wanted to gain insight into the reasons for ALS patients requesting EAS and compare these with the reasons of cancer and heart failure patients. Knowing disease-specific reasons for requesting EAS may improve palliative care in these vulnerable patients. The data used in the present study were derived from the Support and Consultation in Euthanasia in The Netherlands (SCEN) evaluation study. This study provided consultation reports and questionnaires filled out by the attending physicians from 3,337 consultations conducted by SCEN physicians in situations where a patient requested EAS. For this study we selected data on all ALS patients (n = 51), all heart failure patients (n = 61), and a random sample of 73 cancer patients. The most frequently reported reasons for unbearable suffering were: fear of suffocation (45%) and dependency (29%) in ALS patients, pain (46%) and fatigue (28%) in cancer patients, and dyspnea (52%) and dependency (37%) in heart failure patients. Somatic complaints were reported more frequently as a reason for EAS by cancer patients [odds ratio (OR) 0.20, 95% confidence interval (CI) 0.09-0.46] and heart failure patients [OR 0.16, 95% CI 0.05-0.46] than by ALS patients. ALS patients should be helped in a timely fashion to cope with psychosocial symptoms, e.g., by informing them about the low risk of suffocation in the terminal phase and the possible means of preventing this.

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“…Seven units specialize in the care of seriously ill children. 24 G eneral medical studies [1][2][3][4] have indicated that end-of-life decisions with a possible or certain life-shortening effect are common in medical practice. Examples include decisions to withhold or withdraw potentially life-sustaining treatments, decisions to intensify pain and/or symptom alleviation with a possible lifeshortening side effect, and decisions to administer drugs explicitly intended to hasten death.…”

Section: Methods Study Design and Settingmentioning

confidence: 99%

Medical End-of-Life Decisions: Experiences and Attitudes of Belgian Pediatric Intensive Care Nurses

Inghelbrecht¹,

Bilsen²,

Pereth³

et al. 2009

American Journal of Critical Care

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Objective To investigate Belgian pediatric intensive care nurses' involvement in and attitudes toward medical end-of-life decisions with a possible or certain life-shortening effect. Methods Questionnaires were distributed to 141 nurses working in 5 of the 7 pediatric intensive care units in Belgium. Nurses were asked to recall the last child in their care whose treatment involved an end-of-life decision and to describe anonymously their involvement in the decision. Attitudes were ascertained by means of statements and a Likert scale. Results Questionnaires were completed by 89 nurses (63%). During the preceding 2 years, 76 (85%) had cared for at least 1 child for whom a medical end-of-life decision had been made. Nurses were involved in initiating the decision in 17% of cases, participated in decision making in 50%, and played a role in carrying out the decision in 90%. Only 6% of nurses found it always ethically wrong to hasten the death of a child by administering lethal drugs; most nurses (78%) reported they were prepared to cooperate in administering life-ending drugs in some cases. Most (89%) favored adapting the law, making life termination of children legally possible in certain cases. Conclusions Belgian pediatric intensive care nurses are often involved in carrying out medical end-of-life decisions, including administration of life-ending drugs, whereas their participation in decision making is more limited. Most think that the current euthanasia law should be extended to minors so that administering life-ending drugs would be possible for terminally ill children in specific circumstances.

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End-of-life decision-making in six European countries: descriptive study

Cited by 563 publications

References 19 publications

Critical Decisions for Older People With Advanced Dementia: A Prospective Study in Long-Term Institutions and District Home Care

Critical Decisions for Older People With Advanced Dementia: A Prospective Study in Long-Term Institutions and District Home Care

Requests for euthanasia: origin of suffering in ALS, heart failure, and cancer patients

Medical End-of-Life Decisions: Experiences and Attitudes of Belgian Pediatric Intensive Care Nurses

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