scholarly journals IT POSSIBLE TO DIE AT HOME? ANALYSIS OF THE BRAZILIAN AND FRENCH SCENARIOS

2019 ◽  
Vol 28 ◽  
Author(s):  
Franciele Roberta Cordeiro ◽  
Maria Henriqueta Luce Kruse

ABSTRACT Objective: to describe and analyze the challenges and the possibilities of the return to the home in palliative care in the Brazilian and French scenarios. Method: ethnographic study conducted in two hospitals, homes and medical-social establishments. Six people in palliative care, four family members and eight health professionals participated in the study. The data were organized through discursive mapping and analyzed from a cultural and Foucaultian perspective. Results: to present the results, two categories were elaborated: Strategies for hospital discharge in palliative care and between the family, the state and justice: barriers to return home. It is evident that, in Brazil and in France, the return to the home is an event that faces resistance from the families. This fact is mainly related to the cultural conceptions that hospital palliative care units are places capable of providing comfort at the end of life, and difficult access to home care programs and services. In both countries, due to the complexity of hospital discharge, families and managers judicialize this process. Conclusion: the return to the home in palliative care depends on the way death is signified in a culture, the family settings and the existence or not of a network of palliative care in the health systems of each country.

2020 ◽  
pp. 136078042097272
Author(s):  
Ana Patrícia Hilário ◽  
Fábio Rafael Augusto

Drawing upon ethnographic research developed in two Portuguese palliative care units, this article seeks to analyse end-of-life practices, namely how they are perceived and negotiated among the various actors involved. Over a period of 10 months in these units participant observation and in-depth interviews were conducted with 20 family members of patients with a life-threatening illness and 20 health care professionals. Against this backdrop, aspects related to the concept of a ‘good death’, the management of pain and suffering, and the loss of consciousness were explored. The main findings pointed to an appreciation, both by professionals and family members, of an holistic intervention that guarantees the patient’s physical, psychological, social, and spiritual well-being, where the relief of physical symptoms is of particular importance and palliative sedation emerges as a mechanism that allows the patient to achieve a ‘good death’ (without suffering and in a peaceful way).


2020 ◽  
pp. 082585972092416
Author(s):  
Nicole MacPherson ◽  
Terrence Montague ◽  
John Aylen ◽  
Lesli Martin ◽  
Amédé Gogovor ◽  
...  

A challenging issue in contemporary Canadian Medicare is the evolution of end-of-life care. Utilizing data from the 2016 and 2018 Health Care in Canada (HCIC) surveys, this paper compares the support and priorities of the adult public (n = 1500), health professionals (n = 400), and administrators (n = 100) regarding key components for end-of-life care just prior to and post legalization of medical assistance in dying (MAiD) in Canada. In 2016 and 2018, the public, health professionals and administrators strongly supported enhanced availability of all proposed end-of-life care options: pain management, hospice and palliative care, home care supports, and medically assisted death. In 2018, when asked which option should be top priority, the public rated enhanced medically assisted death first (32%), followed by enhanced hospice and palliative care (22%) and home care (21%). Enhanced hospice and palliative care was the top priority for health professionals (33%), while administrators rated enhanced medically assisted death first (26%). Despite legalization and increasing support for MAiD over time, health professionals have increasing fear of legal or regulatory reprisal for personal involvement in medically assisted death, ranging from 38% to 84% in 2018, versus 23% to 42% in 2016. While administrators fear doubled since 2016 (40%-84%), they felt the necessary system supports were in place to easily implement medically assisted death. Optimal management of end-of-life care is strongly supported by all stakeholders, although priorities for specific approaches vary. Over time, professionals increasingly supported MAiD but with a rising fear of legal/regulatory reprisal despite legalization. To enhance future end-of-life care patterns, continued measurement and reporting of implemented treatment options and their system supports, particularly around medically assisted death, are needed.


2017 ◽  
Vol 16 (3) ◽  
pp. 286-297 ◽  
Author(s):  
José Carlos Fernández-Sánchez ◽  
José Manuel Pérez-Mármol ◽  
Antonia Blásquez ◽  
Ana María Santos-Ruiz ◽  
María Isabel Peralta-Ramírez

ABSTRACTObjective:A high incidence of burnout has been reported in health professionals working in palliative care units. Our present study aims to determine whether there are differences in the secretion of salivary cortisol between palliative care unit health professionals with and without burnout, and to elucidate whether there is a relationship between burnout syndrome and perceived stress and psychopathological status in this population.Method:A total of 69 health professionals who met the inclusion criteria participated in our study, including physicians, nurses, and nursing assistants. Some 58 were women (M = 29.65 years, SD = 8.64) and 11 men (M = 35.67 years, SD = 11.90). The level of daily cortisol was registered in six measurements taken over the course of a workday. Burnout syndrome was evaluated with the Maslach Burnout Inventory–Human Services Survey (MBI–HSS), the level of perceived stress was measured using the Perceived Stress Scale, and psychopathological status was gauged using the SCL–90–R Symptoms Inventory.Results:There were statistically significant differences in secretion of cortisol in professionals with high scores on a single subscale of the MBI–HSS [F(3.5) = 2.48, p < 0.03]. This effect was observed 15–30 minutes after waking up (p < 0.01) and at bedtime (p < 0.06). Moreover, the professionals with burnout showed higher scores on the psychopathology and stress subscales than professionals without it.Significance of results:A higher score in any dimension of the burnout syndrome in palliative care unit health professionals seems to be related to several physiological and psychological parameters. These findings may be relevant for further development of our understanding of the relationship between levels of burnout and cortisol secretion in the health workers in these units.


2016 ◽  
Author(s):  
Yuki Kojima ◽  
Nami Iwasaki ◽  
Yuriko Yanaga ◽  
Junko Tanuma ◽  
Yusuke Koizumi ◽  
...  

2016 ◽  
Vol 11 (4) ◽  
pp. 254-264 ◽  
Author(s):  
Megumi Shimizu ◽  
Maho Aoyama ◽  
Tatsuya Morita ◽  
Satoru Tsuneto ◽  
Yasuo Shima ◽  
...  

Author(s):  
E. Alessandra Strada

This chapter describes palliative psychology competencies in the seventh domain of palliative care, which addresses palliative care for the patient approaching end of life and the patient’s family. The medical context of dying is reviewed by discussing the interplay of psychological and medical factors related to approaching death and the dying process. The physiological and psychological changes expected in advanced illness and during the dying process are also discussed. The chapter presents a role for the palliative psychologist at different junctures during advanced illness and the dying process. Complications that may arise during the dying process, including hemorrhage and agitated delirium, are discussed and psychological interventions that can promote safety and comfort for the patient and the family are described.


2018 ◽  
Vol 56 (6) ◽  
pp. e44
Author(s):  
Gloria Mabel Carrillo ◽  
Sonia Carreño ◽  
Rocio Lopez ◽  
Olga Gómez ◽  
Diana Cárdenas ◽  
...  

2019 ◽  
Vol 24 (12) ◽  
pp. 570-575
Author(s):  
Cathryn Smith ◽  
Gina Newbury

Despite many efforts made by health organisations to deliver effective end-of-life care to patients with dementia, research indicates that palliative care is predominantly aimed at patients with terminal cancer, and that patients with dementia face challenges in accessing end-of-life care. This article explores the views of health professionals on providing palliative care to those patients diagnosed with dementia within the community setting. A systematic review of seven qualitative studies was performed to identify the best available evidence. The findings show that effective palliative care for patients with dementia continues being affected by many barriers and challenges. Good practice seems to be inconsistent and fragmented throughout the UK and European countries, and many health professionals are faced with difficulties associated with services and financial implications, training and education, staff support, communication, family support and dementia care.


2019 ◽  
pp. bmjspcare-2019-001881 ◽  
Author(s):  
Juan Arnaez ◽  
Nuria Herranz-Rubia ◽  
Alfredo Garcia-Alix

ObjectiveTo explore end-of-life (EoL) decision-making and palliative care in hypoxic-ischaemic encephalopathy (HIE) nationwide.MethodsA cross-sectional national study on moderate-to-severe HIE in newborns ≥35 weeks’ gestational age in 2015, including all 57 level III units that offered hypothermia. Forty-one questions were included to explore how the prognosis is established, as well as timing of the decision-making process, and also how ongoing palliative care is offered.ResultsThe main difficulties in EoL decisions lie in the scarce time to make an early, accurate prognosis. Only 20% shared the neurological prognosis with the parents within 72 hours of life, and in only a third of the centres is the nurse present when the prognostic information is given to the family. Almost 50% do not use protocols to order the EoL process. Practically, all centres (91%) reported taking into account the wishes of the parents. However, in 30% the team does not always reach consensus on how the withdrawal process. Specialised psychological support is available in 54% of the hospitals; in more than 50%, interviews are not arranged to examine the grieving process with parents.ConclusionsThere are four areas for improvement in the comprehensive, multidisciplinary approach to the EoL decision in the patient with HIE: (1) the need for EoL and interdisciplinary palliative care protocols, (2) participation of nurses in the process and improvement in the nurse–physician communication, (3) psychological support for parents involved in the EoL decisions and (4) implementation of strategies to give support during the grieving process.


2010 ◽  
Vol 34 (1) ◽  
pp. 80 ◽  
Author(s):  
Marion Seal

The delivery of quality care at the end of life should be seamless across all health care settings and independent from variables such as institutional largeness, charismatic leadership, funding sources and blind luck … People have come to fear the prospect of a technologically protracted death or abandonment with untreated emotional and physical stress. (Field and Castle cited in Fins et al., p. 1–2). 1 Australians are entitled to plan in advance the medical treatments they would allow in the event of incapacity using advance directives (ADs). A critical role of ADs is protecting people from unwanted inappropriate cardiopulmonary resuscitation (CPR) at the end stage of life. Generally, ADs are enacted in the context of medical evaluation. However, first responders to a potential cardiac arrest are often non-medical, and in the absence of medical instruction, default CPR applies. That is, unless there is a clear AD CPR refusal on hand and policy supports compliance. Such policy occurs in jurisdictions where statute ADs qualifying or actioning scope is prescriptive enough for organisations to expect all health professionals to appropriately observe them. ADs under common law or similar in nature statute ADs are open to broader clinical translation because the operational criteria are set by the patient. According policy examples require initial medical evaluation to determine their application. Advance care planning (ACP) programs can help bring AD legislation to effect (J. Cashmore, speech at the launch of the Respecting Patient Choices Program at The Queen Elizabeth Hospital, Adelaide, SA, 2004). However, the efficacy of AD CPR refusal depends on the synergy of prevailing AD legislation and ensuing policy. When delivery fails, then democratic AD law is bypassed by paradigms such as the Physician Orders for Life-Sustaining Treatment (POLST) community form, as flagged in Australian Resuscitation Council guidelines. 2 Amidst Australian AD review and statute reform this paper offers a perspective on the attributes of a working AD model, drawing on the Respecting Patient Choices Program (RPCP) experience at The Queen Elizabeth Hospital (TQEH) under SA law. The SA Consent to Medical Treatment and Palliative Care Act 1995 and its ‘Anticipatory Direction’ has been foundational to policy enabling non-medical first responders to honour ADs when the patient is at the end stage of life with no real prospect of recovery. 3 The ‘Anticipatory Direction’ provision stands also to direct appointed surrogate decision-makers. It attunes with health discipline ethics codes; does not require a pre-existing medical condition and can be completed independently in the community. Conceivably, the model offers a national AD option, able to deliver AD CPR refusals, as an adjunct to existing common law and statute provisions. This paper only represents the views of the author and it does not constitute legal advice. What is known about the topic?Differences in advance directive (AD) frameworks across Australian states and territories and between legislated and common law can be confusing. 4 Therefore, health professionals need policy clarifying their expected response. Although it is assumed that ADs, including CPR refusals at the end of life will be respected, unless statute legislation is conducive to policy authorising that non-medical first responders to an emergency can observe clear AD CPR refusals, the provision may be ineffectual. Inappropriate, unwanted CPR can render a person indefinitely in a condition they may have previously deemed intolerable. Such intervention also causes distress to staff and families and ties up resources in high demand settings. What does this paper add?That effectual AD law needs to not only enshrine the rights of individuals but that the provision also needs to be deliverable. To be deliverable, statute AD formulation or operational criteria need to be appropriately scoped so that organisations, through policy, are prepared to legally support nurses and ambulance officers in making a medically unsupervised decision to observe clear CPR refusals. This is a critical provision, given ADs in common law (or similar statute) can apply broadly and, in policy examples, require medical authorisation to enact in order to ensure the person’s operational terms are clinically indicated. Moreover, compliance from health professionals (by act or omission) with in-situ ADs in an unavoidable emergency cannot be assumed unless the scope harmonises with ethics codes. This paper identifies a working model of AD delivery in SA under the Consent to Medical Treatment and Palliative Care Act 1995 through the Respecting Patient Choices Program. What are the implications for practitioners?A clear, robust AD framework is vital for the appropriate care and peace of mind of those approaching their end of life. A nationally recognised AD option is suggested to avail people, particularly the elderly, of their legal right to grant or refuse consent to CPR at the end of life. ADs should not exclude those without medical conditions from making advance refusals, but in order to ensure appropriate delivery in an emergency response, they need to be scoped so as that they will not be prematurely enacted yet clinically and ethically safe for all health professionals to operationalise. Failure to achieve this may give rise to systems bypassing legislation, such as the American (Physician Orders for Life-Sustaining Treatment) POLST example. It is suggested that the current SA Anticipatory Direction under the Consent to Medical treatment and Palliative Care Act 1995 provides a model of legislation producing a framework able to deliver such AD expectations, evidenced by supportive acute and community organisational policies. Definitions.Advance care planning (ACP) is a process whereby a person (ideally ‘in consultation with health care providers, family members and important others’ 5 ), decides on and ‘makes known choices regarding possible future medical treatment and palliative care, in the event that they lose the ability to speak for themselves’ (Office of the Public Advocate, South Australia, see www.opa.sa.gov.au). Advance directives (ADs) in this paper refers to legal documents or informal documents under common law containing individuals’ instructions consent to or refusing future medical treatment in certain circumstances when criteria in the law are met. A legal advance directive may also appoint a surrogate decision-maker.


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