scholarly journals Exploring Paradoxical Lucidity Stories: Working Towards Promoting Meaningful Engagement when Least Expected

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 747-747
Author(s):  
Regula Robnett ◽  
Thomas Meuser
Keyword(s):  
Mixed Methods ◽  
Alzheimer Disease ◽  
End Of Life ◽  
Neurocognitive Disorders ◽  
Cognitive State ◽  
Neurocognitive Impairments ◽  
Short Period ◽  
Meaningful Engagement ◽  
The Right ◽  
End Stage

Abstract Lucidity is the typical cognitive state of adults. However, conditions such as Alzheimer Disease and major neurocognitive disorders can rob people of their usual clarity. Episodes of “paradoxical lucidity” (PL) happen when there is a spontaneous return of lucidity in people who are assumed to have lost the capacity to engage and communicate. These often take place near the end of life. Anecdotal stories depicting PL have been shared for centuries, but the etiology and mechanisms of PL rarely have been examined scientifically. The purpose of this mixed-methods project was to “gather the stories,” of witnessed episodes of PL, to describe them, including potential triggers and contextual supports. Sixty witnesses of episodes have shared their experiences. Two-thirds those displaying PL were female. Most had died within six months of the episode. Episodes generally lasted under an hour (range: “moments” up to 5+ hours). Illustrative descriptions about PL emerged: 1) A trusted person or professional, perhaps unknowingly, saying or doing the right thing could trigger an episode; 2) PL frequently took place in a sacred environment involving ritual spiritual practices (e.g., saying the rosary and singing hymns); 3) meaningful music was often a trigger; and 4) PL sometimes involved the return of one’s professional or familial/friend role. Familiar sounds (e.g., music, voices) were the most common sensory antecedents. A deeper understanding of PL events could potentially drive interventions to promote these valued episodes. The possibility that end-stage neurocognitive impairments could be reversible, even for a short period, is thought-provoking and inspiring.

“I want to go home”: How location at death influences caregiver well-being in bereavement

2020 ◽  
Vol 18 (6) ◽  
pp. 691-698
Author(s):  
Deborah P. Waldrop ◽  
Jacqueline M. McGinley
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
End Of Life ◽  
Patient Preference ◽  
Well Being ◽  
Location Of Death ◽  
Hospice Patient ◽  
End Stage ◽  
Actual Location

AbstractObjectivesGoal concordant or congruent care involves having expressed wishes upheld. Yet, the preferred location for end-of-life care may be unaddressed. Caregiver–patient congruence between preferred and actual locations of care may influence the quality of life in bereavement. The study aimed to explore how the congruence between caregiver–patient preferred and actual locations of death influenced well-being in bereavement.MethodsMixed methods were employed. In-depth in-person interviews were conducted with 108 bereaved caregivers of a hospice patient about 4 months after the death. An interview guide was used to collect quantitative and qualitative data: demographics, decision-making, Core Bereavement Items (CBI), Health Related Quality of Life, and perspectives on the end-of-life experiences. Data were analyzed with a convergent mixed methods one-phase process.ResultsPatient preference–actual location congruence occurred for 53%; caregiver preference–actual location congruence occurred for 74%; caregiver–patient preference and location of death occurred for 48%. Participants who reported some type of incongruence demonstrated higher levels of distress, including more days of being physically and emotionally unwell and more intense bereavement symptoms. The Acute Separation subscale and CBI total scores demonstrated significant differences for participants who experienced incongruence compared with those who did not. Preference location congruence themes emerged: (1) caregiver–patient location congruence, (2) caregiver–patient location incongruence, and (3) location informed bereavement.ConclusionsCongruence between a dying person's preferred and actual locations at death has been considered good care. There has been little focus on the reciprocity between caregiver–patient wishes. Discussing preferences about the place of end-stage care may not make location congruence possible, but it can foster shared understanding and support for caregivers’ sense of coherence and well-being in bereavement.

End-of-Life Care of Persons With Alzheimer Disease: An Update for Clinicians

2019 ◽  
Vol 37 (4) ◽  
pp. 314-317
Author(s):  
Eric Trinh ◽  
Andrew Lee ◽  
Kye Y. Kim
Keyword(s):  
Alzheimer Disease ◽  
End Of Life ◽  
End Of Life Care ◽  
Behavioral Symptoms ◽  
Terminal Cancer ◽  
Food Refusal ◽  
Life Care ◽  
Clinical Issues ◽  
End Stage ◽  
Eol Care

While end-of-life (EOL) care has been a relatively common option for patients with terminal cancer, the utilization of EOL care in Alzheimer disease and other dementias has become available more recently. By the time end-stage dementia is present, the clinicians and caregivers become faced with multiple clinical issues—their inability to provide subjective complaints of pain and discomfort, behavioral symptoms, delirium, food refusal, and so on. In addition to providing quality EOL care to the patients, clinicians need to work with their families in an open and empathic manner, assuring that their loved ones will receive supportive measures to keep them comfortable.

Hypertriglyceridemia: An Infrequent, Difficult-to-predict, Severe Metabolic and Vascular Problem Associated with Estrogen Administration

2020 ◽  
Vol 18 (3) ◽  
pp. 254-261
Author(s):  
Thomas F. Whayne
Keyword(s):  
Acute Pancreatitis ◽  
Severe Side Effect ◽  
Recurrent Acute Pancreatitis ◽  
Postmenopausal Symptoms ◽  
Severe Hypertriglyceridemia ◽  
Short Period ◽  
Cv Disease ◽  
The Right ◽  
And Control ◽  
Transdermal Route

Supplementary estrogen plays important roles for female patients as convenient birth control, relief of postmenopausal symptoms, and in the management of other selected problems. However, as is the case for essentially all medications, there are side effects. Short of a major pulmonary embolus, the most severe side effect of estrogen would appear to be sporadic, rare, and severe hypertriglyceridemia associated with acute pancreatitis. The occurrence of this fortunately rare problem usually happens in the presence of some preexisting and usually mild increase in triglycerides (TG). A case of chronic and severe recurrent acute pancreatitis is described in the introduction and the management was complete estrogen avoidance. Started close to menopause and continued for a relatively short period, estrogens may have some cardiovascular (CV) benefit but the general recommendation is not to prescribe them for CV disease prevention. Estrogens may contribute to decreased diabetes mellitus (DM) risk and control. Administration of estrogens by the transdermal route may decrease some problems such as venous thromboembolism (VTE) and elevation of TG. Administration of estrogen in the right situation brings significant benefit to the female patient but skillful, careful, and knowledgeable use is essential.

scholarly journals Family caregiver emotional distress in advanced cancer: the DME-C scale psychometric properties

2020 ◽  
pp. bmjspcare-2020-002608
Author(s):  
Joaquín T Limonero ◽  
Jorge Maté-Méndez ◽  
María José Gómez-Romero ◽  
Dolors Mateo-Ortega ◽  
Jesús González-Barboteo ◽  
...  
Keyword(s):  
Psychometric Properties ◽  
End Of Life ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Emotional Distress ◽  
Family Caregiver ◽  
Screening Tools ◽  
Anxiety And Depression ◽  
The Family ◽  
End Stage

BackgroundFamily caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools.AimThis study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC).DesignMulticentre, cross-sectional study.Settings/participantsFamily caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA).Results138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach’s alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale.ConclusionsThe DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

Bilateral angle-closure during hospitalization for coronavirus disease-19 (COVID-19): A case report

2021 ◽  
pp. 112067212110121
Author(s):  
Guido Barosco ◽  
Roberta Morbio ◽  
Francesca Chemello ◽  
Roberto Tosi ◽  
Giorgio Marchini
Keyword(s):  
Visual Impairment ◽  
Cataract Extraction ◽  
Ultrasound Biomicroscopy ◽  
Angle Closure ◽  
Blurred Vision ◽  
Primary Angle Closure ◽  
Primary Angle Closure Glaucoma ◽  
Increased Risk ◽  
The Right ◽  
End Stage

Purpose: This report describes a case of bilateral primary angle closure (PAC) progressing to unilateral end-stage primary angle closure glaucoma (PACG) associated with treatment for coronavirus disease-19 (COVID-19) infection. Methods: A 64-year-old man came to our attention because of blurred vision after a 2-month hospital stay for treatment of COVID-19 infection. Examination findings revealed PACG, with severe visual impairment in the right eye and PAC in the left eye due to plateau iris syndrome. The patient’s severe clinical condition and prolonged systemic therapy masked the symptoms and delayed the diagnosis. Medical chart review disclosed the multifactorial causes of the visual impairment. Ultrasound biomicroscopy (UBM) aided in diagnosis and subsequent therapy. Results: The cause behind the primary angle closure and the iridotrabecular contact was eliminated by bilateral cataract extraction, goniosynechialysis, and myotic therapy. Conclusions: COVID-19 treatment may pose an increased risk for PAC. Accurate recording of patient and family ophthalmic history is essential to prevent its onset. Recognition of early signs of PAC is key to averting its progression to PACG.

scholarly journals 77 National Audit of Care At the End of Life (NACEL)—Round Two Findings

2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i12-i42
Author(s):  
D Hibbert
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Care Service ◽  
Palliative Care Service ◽  
Care Plan ◽  
Specialist Palliative Care ◽  
Experience Of Care ◽  
Outcomes Of Care ◽  
Specialist Palliative Care Service ◽  
The Right

Abstract   NACEL is a national comparative audit of the quality and outcomes of care experienced by the dying person and those important to them during the final admission in acute and community hospitals in England and Wales. Mental health inpatient providers participated in the first round but excluded from the second round. NACEL round two, undertaken during 2019/20, comprised: Data was collected between June and October 2019. 175 trusts in England and 8 Welsh organisations took part in at least one element of NACEL (97% of eligible organisations). Key findings include Recognising the possibility of imminent death: The possibility that the patient may die was documented in 88% of cases. The median time from recognition of dying to death was 41 hours (36 hours in the first round). Individual plan of care: 71% of patients, where it had been recognised that the patient was dying (Category 1 deaths), had an individualised end of life care plan. Of the patients who did not have an individualised plan of care, in 45% of these cases, the time from recognition of dying to death was more than 24 hours. Families’ and others’ experience of care: 80% of Quality Survey respondents rated the quality of care delivered to the patient as outstanding/excellent/good and 75% rated the care provided to families/others as outstanding/excellent/good. However, one-fifth of responses reported that the families’/others’ needs were not asked about. Individual plan of care: 80% of Quality Survey respondents believed that hospital was the “right” place to die; however, 20% reported there was a lack of peace and privacy. Workforce Most hospitals (99%) have access to a specialist palliative care service. 36% of hospitals have a face-to-face specialist palliative care service (doctor and/or nurse) available 8 hours a day, 7 days a week. NACEL round three will start in 2021.

Serious Mental Illness and Hospice Care

2021 ◽  
pp. 082585972110220
Author(s):  
Gwen Levitt
Keyword(s):  
Mental Health ◽  
End Of Life ◽  
End Of Life Care ◽  
Psychiatric Illness ◽  
Hospice Care ◽  
Treatment Options ◽  
Life Care ◽  
Case Review ◽  
Health Community ◽  
End Stage

There are a small number of articles in the literature discussing palliative and end-of-life care in the SMI population. Most tackle the questions relating to competency to refuse care in end-stage anorexia or terminal medical conditions. This is a case review of a 55 year old patient with a complex psychiatric and medical history, who despite extensive treatment and long hospitalizations has failed to regain any ability to care for her basic needs. She has exhausted all available treatment options and her prognosis is extremely poor. The mental health community is resistant to discussing and/ or confronting the fact that such a patient faces with the need for end-of-life care directly related to chronic psychiatric illness.

scholarly journals The potential for person-centred planning to support the community participation of adults with an intellectual disability

2021 ◽  
pp. 174462952110221
Author(s):  
Darren McCausland ◽  
Esther Murphy ◽  
Mary McCarron ◽  
Philip McCallion
Keyword(s):  
Intellectual Disability ◽  
Mixed Methods ◽  
Community Participation ◽  
Social Inclusion ◽  
Mixed Methods Approach ◽  
Complex Needs ◽  
Qualitative Case Studies ◽  
Quantitative Analyses ◽  
The Right ◽  
The Impact

Person-centred planning (PCP) puts individuals with an intellectual disability at the centre of service and support planning, identifying how individuals wish to live their lives and what is needed to make that possible. PCP has been identified as having the potential to facilitate improved social inclusion and community participation. A mixed-methods approach combined quantitative analyses with qualitative case studies of individuals with severe-profound intellectual disability to assess the impact of PCP on community participation for adults with an intellectual disability at a disability service in Dublin. We conclude that PCP may provide a good basis to plan community participation and, with the right supports in place, may provide opportunities for people with complex needs to improve their community participation. Supports including familiar staff and family are critical to the success of PCP for people with complex needs, and their absence may undermine the best intentions of PCP for this population.

scholarly journals Facing Death: Attitudes toward Physician-Assisted End of Life among Physicians Working at a Tertiary-Care-Hospital in Israel

2021 ◽  
Vol 18 (12) ◽  
pp. 6396
Author(s):  
Keren Dopelt ◽  
Dganit Cohen ◽  
Einat Amar-Krispel ◽  
Nadav Davidovitch ◽  
Paul Barach
Keyword(s):  
End Of Life ◽  
Tertiary Care Hospital ◽  
Human Life ◽  
Tertiary Care ◽  
Terminally Ill ◽  
Background Information ◽  
Care Hospital ◽  
Medical Assistance In Dying ◽  
Terminally Ill Patients ◽  
The Right

The demand for medical assistance in dying remains high and controversial with a large knowledge gap to support optimal patient care. The study aimed to explore physicians’ attitudes regarding euthanasia and examine the factors that related to these attitudes. We surveyed 135 physicians working at a tertiary-care hospital in Israel. The questionnaire was comprised of demographic and background information, DNR procedure information, encounters with terminally ill patients, familiarity with the law regarding end-of-life questions, and Attitudes toward Euthanasia. About 61% agreed that a person has the right to decide whether to expedite their own death, 54% agreed that euthanasia should be allowed, while 29% thought that physicians should preserve a patients’ life even when they expressed the wish to die. A negative statistically significant relationship was found between the level of religiosity and attitudes toward euthanasia. The physicians’ attitudes towards euthanasia are quite positive when compared to other countries. The data shows a conflict of values: the sacredness of human life versus the desire to alleviate patients’ suffering. The Coronavirus-19 outbreak reinforces the importance of supporting physicians’ efforts to provide ethical and empathic communication for terminally ill patients. Future studies should aim to improve our understanding and treatment of the specific types of suffering that lead to end-of-life requests.

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