scholarly journals Teaching death: exploring the end of life in a novel undergraduate course

2021 ◽  
Vol 3 (1) ◽  
Author(s):  
David Kulp ◽  
Lynn O’Neill ◽  
Tammie Quest ◽  
Susan Tamasi ◽  
Kim Loudermilk ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Emerging Adults ◽  
Death And Dying ◽  
Western Culture ◽  
Intellectual Community ◽  
Pedagogical Approaches

AbstractWestern culture discourages discussion of death and dying, especially with healthy emerging adults. Yet, research shows that engaging this population in conversations about death and dying is empowering and important for young people’s decision-making around and understanding of the end of life. We show that students are indeed ill-informed on such issues but that they desire to learn more. We describe and assess a pilot undergraduate course in palliative care addressing this need, and we demonstrate its success in engaging and educating students using pedagogical approaches built to develop a social and intellectual community of trust.

scholarly journals Conversations About Death and Dying, End-of-Life Care Plans and Preferences Between Aging Parents and Adult Children

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-417
Author(s):  
Hyo Jung Lee ◽  
Jacobbina Jin Wen Ng
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Adult Children ◽  
End Of Life Care ◽  
Death And Dying ◽  
Family Members ◽  
Life Care ◽  
Joint Decision ◽  
Aging Parents ◽  
Care Plans

Abstract This study aims to investigate whether attitude and perception on late-life death and dying, end-of-life care plans and preferences could be better understood from current values shared between aging parents and their adult children in the multi-cultural city-bound country, Singapore. We are in the process of interviewing 20 aging parent-adult child dyads. Up to date, six semi-structured interviews were completed and transcribed. We performed Content analysis to analyze the transcripts. Preliminary findings showed that both aging parents and adult children rarely discussed this issue, although parents had their own plans or preferences. The major barriers against open conversations about death and dying of aging parents include: the perception of not-yet time to talk about this issue (without knowing when the right time is) and tendency to have conversations about death in tandem with finances, but not death itself. Although specific end-of-life care plans or arrangements were not thought out thoroughly, aging parents expressed a high level of trust and reliance on close family members’ decisions regarding their end-of-life care. They tended to agree on joint decision-making process within family, even though adult children had no or unmatched ideas about their aging parents’ end-of-life wishes. This did not necessarily align with previous findings in Western countries, underscoring individuals’ control over their own death and dying process. Open conversation within family, family-involved advance care planning, or joint decision-making processes may be warranted to promote quality of life and death in older Singaporeans and well-being of their family members of all ages.

Palliative care nursing involvement in end-of-life decision-making: Qualitative secondary analysis

2018 ◽  
Vol 26 (6) ◽  
pp. 1680-1695 ◽  
Author(s):  
Pablo Hernández-Marrero ◽  
Emília Fradique ◽  
Sandra Martins Pereira
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Secondary Analysis ◽  
Controversial Issues ◽  
End Of Life Decisions ◽  
Ethics Research ◽  
Qualitative Secondary Analysis ◽  
End Of Life Decision ◽  
Life Decision

Background: Nurses are the largest professional group in healthcare and those who make more decisions. In 2014, the Committee on Bioethics of the Council of Europe launched the “Guide on the decision-making process regarding medical treatment in end-of-life situations” (hereinafter, Guide), aiming at improving decision-making processes and empowering professionals in making end-of-life decisions. The Guide does not mention nurses explicitly. Objectives: To analyze the ethical principles most valued by nurses working in palliative care when making end-of-life decisions and investigate if they are consistent with the framework and recommendations of the Guide; to identify what disputed/controversial issues are more frequent in these nurses’ current end-of-life care practices. Design: Qualitative secondary analysis. Participants/context: Three qualitative datasets including 32 interviews from previous studies with nurses working in palliative care in Portugal. Ethical consideration: Ethical approval was obtained from the Ethics Research Lab of the Instituto de Bioética (Ethics Research Lab of the Institute of Bioethics) (Ref.04.2015). Ethical procedures are thoroughly described. Findings: All participant nurses referred to autonomy as an ethical principle paramount in end-of-life decision-making. They were commonly involved in end-of-life decision-making. Palliative sedation and communication were the most mentioned disputed/controversial issues. Discussion: Autonomy was highly valued in end-of-life care and decision-making. Nurses expressed major concerns in assessing patients’ preferences, wishes, and promoting advance care planning. Nurses working in palliative care in Portugal were highly involved in end-of-life decision-making. These processes embraced a collective, inclusive approach. Palliative sedation was the most mentioned disputed issue, which is aligned with previous findings. Communication also emerged as a sensitive ethical issue; it is surprising, however, that only three nurses referred to it. Conclusion: While the Guide does not explicitly mention nurses in its content, this study shows that nurses working in palliative care in Portugal are involved in these processes. Further research is needed on nurses’ involvement and practices in end-of-life decision-making.

Surgical Palliative Care

2018 ◽  
Author(s):  
Zara Cooper ◽  
Emily B. Rivet
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Symptom Relief ◽  
Psychological Needs ◽  
Sudden Onset ◽  
Transitions Of Care ◽  
Patient Comfort ◽  
Health State ◽  
Surgery Patient

Palliative care is a multidisciplinary approach to care that includes relief of suffering and attention to the social, spiritual, physical, and psychological needs of patients and families. The intent of palliative care is to help patients live as well as possible for as long as possible, and relevant domains of palliative care include symptom relief, prognostication, communication with patients, families and clinicians, transitions of care, and end-of-life care. Palliative care is distinct from hospice in many respects including that it can be provided simultaneously with recovery-directed treatments rather than reserved for individuals at end of life. Patients with surgical disease are particularly in need of palliative care due to the common occurrence of severe symptoms such as pain and nausea, complex decision-making, and the often sudden onset of the disease or injury which precludes preparation for the new health state.   Key Words: communication, end-of- life, goals of care, high-risk surgery, palliative, palliative care, palliative surgery, patient comfort, surgical decision-making, surgical prognostication This review contains 3 figures, 10 tables, and 61 references.

Perinatal hypoxic-ischaemic encephalopathy: a national survey of end-of-life decisions and palliative care

2019 ◽  
pp. bmjspcare-2019-001881 ◽  
Author(s):  
Juan Arnaez ◽  
Nuria Herranz-Rubia ◽  
Alfredo Garcia-Alix
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Psychological Support ◽  
National Study ◽  
Prognostic Information ◽  
Cross Sectional ◽  
Grieving Process ◽  
The Family ◽  
Neurological Prognosis

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.

The influence of care place and diagnosis on care communication at the end of life: bereaved family members’ perspective

2021 ◽  
pp. 1-8
Author(s):  
Anna O'Sullivan ◽  
Anette Alvariza ◽  
Joakim Öhlén ◽  
Cecilia Larsdotter ex. Håkanson
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Nursing Home ◽  
End Of Life ◽  
Family Members ◽  
Palliative Care Unit ◽  
Deceased Person ◽  
Specialized Palliative Care ◽  
Bereaved Family ◽  
At Home

Abstract Objective To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members’ perspective. Method A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20−90 years old, 70% women) of people who died in hospital was employed to meet the study aim. Results Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40). Significance of results This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members’ reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.

scholarly journals Decision making in the end-of-life care of patients who are terminally ill with cancer – a qualitative descriptive study with a phenomenological approach from the experience of healthcare workers.

2021 ◽  
Author(s):  
Angela Luna-Meza ◽  
Natalia Godoy-Casasbuenas ◽  
José Andrés Calvache ◽  
Eduardo Diaz ◽  
Fritz Gempeler ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
End Of Life Decisions ◽  
Care Plans ◽  
Qualitative Descriptive ◽  
Imminent Death

Abstract Background: In Colombia, recent legislation regarding end-of-life decisions includes palliative sedation, advance directives and euthanasia. We analysed which aspects influence health professionals´ decisions regarding end-of-life medical decisions and care for cancer patients.Methods: Qualitative descriptive–exploratory study based on phenomenology using semi-structured interviews. We interviewed 28 oncologists, palliative care specialists, general practitioners and nurses from three major Colombian institutions, all involved in end-of-life care of cancer patients: Hospital Universitario San Ignacio and Instituto Nacional de Cancerología in Bogotá and Hospital Universitario San José in Popayan. Results: When making decisions regarding end-of-life care, professionals consider: 1. Patient’s clinical condition, cultural and social context, in particular treating indigenous patients requires special skills. 2. Professional conditions: training in palliative care and experience in discussing end-of-life options and fear of legal consequences. Physicians indicate that many patients deny their imminent death which hampers shared decision-making and conversations. They mention frequent unclarity regarding who initiates conversations regarding end-of-life decisions with patients and who finally takes decisions. Patients rarely initiate such conversations and the professionals normally do not patients directly for their preferences. Fear of confrontation with family members and lawsuits leads doctors to carrying out interventions such as initiating artificial feeding techniques and cardiopulmonary resuscitation, even in absence of expected benefits. The opinions regarding the acceptability of palliative sedation, euthanasia and use of medications to accelerate death without the patients´ explicit request vary greatly. 3. Conditions of the insurance system: limitations exist in the offer of oncology and palliative care services for important proportions of the Colombian population. Colombians have access to opioid medications, barriers to their application are largely in delivery by the health system, the requirement of trained personnel for intravenous administration and ambulatory and home care plans which in Colombia are rare.Conclusions: to improve end-of-life decision making, Colombian physicians and patients need to openly discuss wishes, needs and care options and prepare caregivers. Promotion of palliative care education and development of palliative care centres and home care plans is necessary to facilitate access to end-of-life care. Patients and caregivers’ perspectives are needed to complement physicians’ perceptions and practices. Key Message: The results highlight the importance of improving access to end-of-life care in Colombia, and diminish the “denial of imminent death” among patients and caregivers to facilitate end-of-life discussions and shared decisions; interventions to prepare caregivers and promote home care.

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