A Review of Terman's "Timely dying in dementia: Use patients' judgments and broaden the concept of suffering".
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SUBMITTER: Cantor NL
PROVIDER: S-EPMC10941508 | biostudies-literature | 2024 Jan-Mar
REPOSITORIES: biostudies-literature
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A Review of Terman's "Timely dying in dementia: Use patients' judgments and broaden the concept of suffering".
Alzheimer's & dementia (Amsterdam, Netherlands) 20240101 1
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Project description: Not available
| S-EPMC10941520 | biostudies-literature
Project description:Broadening the concept of suffering in dementia to five types of suffering including suffering of family caregivers as proposed by Terman et al., may help raise awareness on a need to relieve suffering when living with dementia and adopt a holistic approach. However, as objective criteria in advance care plans for severe enough suffering to stop assisted feeding or other life-sustaining treatment in people with advanced dementia, these still need interpretation in the context of, for example, available treatment, and change in coping. New is the proposal to broaden severe enough suffering to suffering of family, including "bi-directional empathic suffering." We believe this creates new dilemmas regarding responsibility and may increase feelings of guilt. Quantifying suffering by adding up moderate suffering could further complicate matters. Therefore, we argue that a health care professional should guide the process and assume responsibility over current decisions to follow a person's previous wishes.
| S-EPMC10941495 | biostudies-literature
Project description: Not available
| S-EPMC10941496 | biostudies-literature
Project description:BackgroundAssisted dying, also commonly known as euthanasia and physician-assisted suicide, is legal in many countries. Interest in assisted dying is growing due to evolving societal understandings of a good death and a desire for choice. Ethico-legal perspectives are well-known, but as societies become more heterogenous, a greater understanding of the perspectives of people from diverse racial, ethnic, and cultural backgrounds is needed.AimTo explore perspectives of people from diverse racial, ethnic and cultural backgrounds about assisted dying.DesignScoping review with narrative synthesis. The protocol was registered with Open Science Framework.Data sourcesMedline, CINAHL Complete, PsycINFO and ProQuest Dissertations & Theses Global were searched from inception to May 2023. Citations were independently assessed against inclusion and exclusion criteria.ResultsOf the 17 included studies, perspectives of assisted dying were presented according to religion, religiosity, spirituality, race, ethnicity and ancestry. Perspectives were diverse, presenting more as a spectrum, with multiple intersections and interconnections. Support and/or opposition for assisted dying differed according to cultural attributes, but even amongst those with similar cultural attributes, perspectives differed according to life experiences and notions of suffering.ConclusionPerspectives on assisted dying are dynamic and evolving. Even where assisted dying is legalised, individual's cultural attributes contribute to unique perspectives of assisted dying as an end-of-life option. Thus, understanding a person's culture, beliefs, expectations and choices in illness, treatment goals and care is fundamental, extending beyond what may be already considered as part of clinician-patient care relationships and routine advance care planning.
| S-EPMC11487986 | biostudies-literature
Project description:BackgroundIn Colombia, cancer incidence is increasing, as is the demand for end-of-life care. Understanding how patients who die from cancer experience this phase will allow the identification of factors associated with greater suffering and actions to improve end-of-life care. We aimed to explore associations between the level of suffering of patients who died from cancer and were cared for in three Colombian hospitals with patient, tumor, treatment, and care characteristics and provided information.MethodsData on the last week of life and level of suffering were collected through proxies: Bereaved caregivers of patients who died from cancer in three participating Colombian hospitals. Bereaved caregivers participated in a phone interview and answered a series of questions regarding the last week of the patient's life. An ordinal logistic regression model explored the relationship between the level of suffering reported by bereaved caregivers with the patient's demographic and clinical characteristics, the bereaved caregivers, and the care received. Multivariate analyses were adjusted for place of death, treatments to prolong of life, prolongation of life during the dying process, suffering due to prolongation of life, type of cancer, age, if patient had partner, rural/urban residence of patient, importance of religion for the caregiver, caregivers´ relationship with the patient, and co-living with the patient.ResultsA total of 174 interviews were included. Median age of the deceased patients was 64 years (IQR 52-72 years), and 93 patients were women (53.4%). Most caregivers had rated the level of suffering of their relative as "moderately to extremely" (n = 139, 80%). In multivariate analyses, factors associated with a higher level of suffering were: unclear information about the treatment and the process before death Odds Ratio (OR) 2.26 (90% CI 1.21-4.19), outpatient palliative care versus home care OR 3.05 (90% CI 1.05-8.88), procedures inconsistent with the patient's wishes OR 2.92 (90% CI 1.28-6.70), and a younger age (18-44 years) at death versus the oldest age group (75-93 years) OR 3.80 (90% CI 1.33-10.84, p = 0.04).ConclusionEnd-of-life care for cancer patients should be aligned as much as possible with patients´ wishes, needs, and capacities. A better dialogue between doctors, family members, and patients is necessary to achieve this.
| S-EPMC10120203 | biostudies-literature
Project description:ObjectivesTo elicit Quebec physicians' attitudes towards extending medical aid in dying (MAiD) to incompetent patients and to compare the attitudes of family physicians to those of other medical specialists.MethodsWe conducted a postal survey among physicians caring for patients with dementia. We used hypothetical vignettes to elicit their attitudes towards MAiD and continuous deep sedation (CDS) to relieve suffering at end of life. Two patients were depicted in the vignettes: one with cancer eligible for MAiD and one with dementia. The generalized estimating equation approach was used to investigate factors associated with attitudes, including the stage of the illness (advanced vs terminal dementia) and the presence or absence of a prior written request.ResultsA total of 136 physicians out of 653 returned the questionnaire. Physicians favoured CDS over MAiD for relieving suffering in the cancer vignette (93% vs 79%; p = 0.002). In advanced dementia, 45% of physicians supported giving the patient access to MAiD with a written request and 14% without such request. At the terminal stage of dementia, these proportions increased to 71% and 43%, respectively (p < 0.001), reaching 79% and 52% among family physicians. Support for CDS in terminal dementia was lower than in end-stage cancer (68% vs 93%; p < 0.001) and equal to MAiD with a written request (68% vs 71%; p = 0.623).ConclusionMany Quebec physicians support extending MAiD to incompetent patients with dementia to relieve suffering at the terminal stage. This finding will inform current deliberations as to whether MAiD should be extended to these patients.
| S-EPMC6964547 | biostudies-literature
Project description:BackgroundPrimary care physicians provide palliative home care. In cancer patients dying at home in the Netherlands (45% of all cancer patients) euthanasia in about one out of every seven patients indicates unbearable suffering. Symptom prevalence, relationship between intensity of symptoms and unbearable suffering, evolvement of symptoms and unbearability over time and quality of unbearable suffering were studied in end-of-life cancer patients in primary care.Methods44 general practitioners during three years recruited cancer patients estimated to die within six months. Every two months patients quantified intensity as well as unbearability of 69 symptoms with the State-of-Suffering-V (SOS-V). Also overall unbearable suffering was quantified. The five-point rating scale ranged from 1 (not at all) to 5 (hardly can be worse). For symptoms assessed to be unbearable the nature of the suffering was additionally investigated with open-ended questions. The final interviews were analyzed; for longitudinal evolvement also the pre-final interviews were analyzed. Symptom intensity scores 4 and 5 were defined to indicate high intensity. Symptom unbearability scores 4 and 5 were defined to indicate unbearable suffering. Two raters categorized the qualitative descriptions of unbearable suffering.ResultsOut of 148 requested patients 51% participated; 64 patients were followed up until death. The SOS-V was administered at least once in 60 patients (on average 30 days before death) and at least twice in 33 patients. Weakness was the most frequent unbearable symptom (57%). Pain was unbearable in 25%. Pain, loss of control over one's life and fear of future suffering frequently were unbearable (89-92%) when symptom intensity was high. Loss of control over one's life, vomiting and not being able to do important things frequently were unbearable (52-80%) when symptom intensity was low. Unbearable weakness significantly increased between pre-final and final interview. Physical suffering, loss of meaning, loss of autonomy, experiencing to be a burden, fear of future suffering and worrying more frequently occurred in patients suffering unbearably overall.ConclusionsWeakness was the most prevalent unbearable symptom in an end-of-life primary care cancer population. Physical suffering, loss of meaning and loss of autonomy more frequently occurred in patients who suffered unbearably overall.
| S-EPMC3877870 | biostudies-literature
Project description: Not available
| S-EPMC10941568 | biostudies-literature
Project description:Quantitative mass spectrometry has transformed proteomics by allowing the simultaneous quantification of thousands of proteins. To boost statistical power, it is necessary to increase sample sizes by combining patient-derived data from various institutions. However, this practice raises significant privacy concerns. We created this dataset comtaining 30 healthy donors and 30 patients suffering from focal segmental glomerulosclerosis - a rare kidney disease - and distributed them to three independent proteomics centers. This distributed data were used as a proof of concept to introduce FedProt - the first privacy-preserving tool for collaborative differential protein abundance analysis of distributed data.
2024-08-08 | PXD053560 | Pride
Project description:ObjectivePatients with a psychiatric disorder are eligible to request medical assistance in dying (MAID) in a small but growing number of jurisdictions, including the Netherlands and Belgium. In Canada, MAID for mental illness will become possible in 2023. For this request to be granted, most of these jurisdictions demand that the patient is competent in her request, and that the suffering experienced is unbearable and irremediable. Especially the criterion of irremediability is challenging to establish in patients with psychiatric disorders. The aim of this research is to establish what criteria Dutch and Belgian experts agree to be necessary in characterising irremediable psychiatric suffering (IPS) in the context of MAID.MethodsA two-round Delphi procedure among psychiatrists with relevant experience.ResultsThirteen consensus criteria were established: five diagnostic and eight treatment-related criteria. Diagnostically, the participants deem a narrative description and attention to contextual and systemic factors necessary. Also, a mandatory second opinion is required. The criteria concerning treatment show that extensive biopsychosocial treatment is needed, and the suffering must be present for several years. Finally, in the case of refusal, the participants agree that there are limits to the number of diagnostic procedures or treatments a patient must undergo.ConclusionsConsensus was found among a Dutch and Belgian expert group on potential criteria for establishing IPS in the context of MAID. These criteria can be used in clinical decision-making and can inform future procedural demands and research.
| S-EPMC9510999 | biostudies-literature