Planning for the actual death

2015 ◽  
pp. 515-530 ◽  
Author(s):  
Patricia Berry ◽  
Julie Griffie
Keyword(s):  
End Of Life ◽  
Healthcare Professionals ◽  
Family Members ◽  
The Body ◽  
Postmortem Changes ◽  
Family Needs ◽  
Goals Of Care ◽  
Aggressive Management ◽  
A Priority

The care of patients and families near to death and afterward is an important nursing function—arguably one of the most important things nurses do. At the end of life, nurses and other healthcare professionals often only have one chance to “get it right.” Assessment and aggressive management of symptoms must remain a priority, especially as death approaches. Goals of care inevitably change in rhythm with patient and family needs and wishes. Care of the body after death, including normalizing and interpreting postmortem changes and honoring rituals and individual requests, is critically important in communicating to family members and close others that the person who died was indeed important and valued.

Much Ado About Fried Chicken: Abetting Aspiration or Respecting Autonomy?

2019 ◽  
Vol 28 (3) ◽  
pp. 1356-1362
Author(s):  
Laurence Tan Lean Chin ◽  
Yu Jun Lim ◽  
Wan Ling Choo
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Multidisciplinary Team ◽  
Biopsychosocial Model ◽  
Family Members ◽  
Clinical Decisions ◽  
Goals Of Care ◽  
Complex Needs ◽  
Aspiration Risk ◽  
Patient Centric

Purpose Palliative care is a philosophy of care that encompasses holistic, patient-centric care involving patients and their family members and loved ones. Palliative care patients often have complex needs. A common challenge in managing patients near their end of life is the complexity of navigating clinical decisions and finding achievable and realistic goals of care that are in line with the values and wishes of patients. This often results in differing opinions and conflicts within the multidisciplinary team. Conclusion This article describes a tool derived from the biopsychosocial model and the 4-quadrant ethical model. The authors describe the use of this tool in managing a patient who wishes to have fried chicken despite aspiration risk and how this tool was used to encourage discussions and reduce conflict and distress within the multidisciplinary team.

Do patients with lung cancer recall physician-initiated discussions about planning for end-of-life care following disclosure of a terminal prognosis?

2016 ◽  
Vol 9 (2) ◽  
pp. 197-201 ◽  
Author(s):  
Gillian Horne ◽  
Sheila Payne ◽  
Jane Seymour
Keyword(s):  
Lung Cancer ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Terminally Ill ◽  
Care Planning ◽  
Life Care ◽  
Goals Of Care ◽  
Terminally Ill Patients ◽  
Terminal Prognosis

BackgroundCommunicating with patients about their prognosis and goals of care, including offering opportunities to engage in advance care planning (ACP) is widely recognised as best practice. Little is known about terminally ill patients’ perceptions of communication and ACP practice following disclosure of their terminal prognosis.ObjectivesTo examine whether terminally ill patients with lung cancer and their relatives recall conversations with disclosing physicians, about their concerns, goals of care or any offers to engage in ACP.MethodsQualitative study using semistructured interviews with patients and their family members. The study setting was a cancer centre and cancer unit in northern England.Results25 patients with advanced lung cancer (18 men and 7 women, aged 47–85) and 19 family members, mainly from lower social economic classes, took part in the study. Participants had little or no recall of physicians initiating discussions about their concerns, or goals of care and did not perceive that they had been provided with either information about or opportunities to engage in ACP. Some participants reported a sense of abandonment following the disclosure of a terminal prognosis. This sense was compounded by a range of difficult emotional experiences following the disclosure.ConclusionsIt may be inappropriate to initiate discussions about end-of-life care planning immediately following the disclosure of a terminal prognosis. To avoid patients feeling abandoned physicians need to consider how they or another appropriate person can provide information and opportunities for terminally ill patients to engage in a process of ACP.Trial registration number06/Q2307/22.

scholarly journals Practice Recommendations for End-of-Life Care in the Intensive Care Unit

2020 ◽  
Vol 40 (3) ◽  
pp. 14-22 ◽  
Author(s):  
Hanne Irene Jensen ◽  
Kristin Halvorsen ◽  
Heidi Jerpseth ◽  
Isabell Fridh ◽  
Ranveig Lind
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Life Care ◽  
Family Needs ◽  
High Quality ◽  
Number Of Patients ◽  
The Family

Topic A substantial number of patients die in the intensive care unit, so high-quality end-of-life care is an important part of intensive care unit work. However, end-of-life care varies because of lack of knowledge of best practices. Clinical Relevance Research shows that high-quality end-of-life care is possible in an intensive care unit. This article encourages nurses to be imaginative and take an individual approach to provide the best possible end-of-life care for patients and their family members. Purpose of Paper To provide recommendations for high-quality end-of-life care for patients and family members. Content Covered This article touches on the following domains: end-of-life decision-making, place to die, patient comfort, family presence in the intensive care unit, visiting children, family needs, preparing the family, staff presence, when the patient dies, after-death care of the family, and caring for staff.

scholarly journals 重審生命倫理學視域下身體話語的地位——以臨終決策為線索

2015 ◽  
Vol 13 (1) ◽  
pp. 83-94
Author(s):  
Jue WANG
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Personal Identity ◽  
Ethical Issues ◽  
Family Members ◽  
The Body ◽  
Confucian Ethics ◽  
Individual Autonomy ◽  
End Of Life Decision ◽  
Life Decision

LANGUAGE NOTE | Document text in Chinese; abstract also in English.對於生命終極的關懷，臨終決策是現代生命倫理學不可忽視的一個重大話題。本文試圖從身體的角度論證當代生命倫理學話語由於失落了身體而陷入一場深刻的危機。具體而言，本文將通過對臨終決策困境的分析展示危機的根源，論證身體經驗及相關倫理關係是生命倫理學不可或缺的基礎。作者認為，只有作為身體倫理，生命倫理學才能充分實現它的學術追問和學科理念。身心二元論只是一個虛構，身體性存在才是人格同一性的真正基礎。因此，建設生命倫理學不只是擁抱某些抽象的自主原則，或是某些精緻的道德主體的體系，更關鍵的問題是要回答“我們希望成為何等樣的人，希望將來生活在怎樣的世界中”。How is the body articulated in language and discourse during end-of-life decision making? How do individuals and their family members represent and define the relationships between person, body, and self? Recently, studies have been conducted on the decision-making process in the field of end-of-life care. Most researchers focus on patients’ determination (vis-à-vis physicians’ beneficence), which gives rise to a plethora of issues, such as patients’ self-identity, self-continuity, relationships, freedom of choice,and rights.In this paper, end-of-life decision making is considered from the perspective of the relationship between the body and one’s personal identity. It is argued that the current bioethical discourse on individual autonomy and patients’ rights is inadequate to address the ethical issues relating to end-of-life decision making. Instead of purely theoretically conceptualizing the sovereignty of the patient over his or her body, the author explores the issue in relation to the phenomenology of lived-body experience as described by the American bioethicist Margret P. Battin. The rights available to the patient are not the only significant issue during end-of-life decision-making; aspects of the patient’s physicality are also relevant. Discourse on representations of the body and embodied action/autonomy aids our understanding of end-of-life choices. Finally, these body-related issues are linked with the Confucian understanding of what a person is. According to Confucian ethics, personal identity should not be viewed as an abstract “thing”; instead, it is defined by a person’s relationships with others, especially family members, in his/her most vulnerable moments.DOWNLOAD HISTORY | This article has been downloaded 138 times in Digital Commons before migrating into this platform.

Processes toward the end of life and dialysis withdrawal Physicians’ and nurses’ perspectives

2019 ◽  
Vol 27 (2) ◽  
pp. 419-432
Author(s):  
Lena Axelsson ◽  
Eva Benzein ◽  
Jenny Lindberg ◽  
Carina Persson
Keyword(s):  
Decision Making ◽  
Kidney Disease ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Moral Distress ◽  
Qualitative Content Analysis ◽  
Family Members ◽  
Research Approach ◽  
End Stage Kidney Disease ◽  
End Stage

Background: Nurses and physicians in nephrology settings provide care for patients with end-stage kidney disease receiving hemodialysis treatment along a complex illness trajectory. Aim: The aim was to explore physicians’ and nurses’ perspectives on the trajectories toward the end of life involving decisions regarding hemodialysis withdrawal for patients with end-stage kidney disease. Research design and participants: A qualitative research approach was used. Four mixed focus group interviews were conducted with renal physicians (5) and nurses (17) in Sweden. Qualitative content analysis was used to analyse data. Ethical considerations: Ethical approval was obtained (Dnr 2014/304-31). Findings and discussion: Findings illuminated multi-faceted, intertwined processes encompassing healthcare professionals, patients, and family members. The analysis resulted in four themes: Complexities of initiating end-of-life conversations, Genuine attentiveness to the patient’s decision-making process, The challenge awaiting the family members’ processes, and Negotiating different professional responsibilities. Findings showed complexities and challenges when striving to provide good, ethical care which are related to beneficence, nonmaleficence, and self-determination, and which can give rise to moral distress. Conclusion: There are ethical challenges and strains in the dialysis context that healthcare professionals may not always be prepared for. Supporting healthcare professionals in not allowing complexities to hinder the patient’s possibilities for shared decision-making seems important. An open and continual communication, including family meetings, from dialysis initiation could serve to make conversations involving decisions about hemodialysis withdrawal a more natural routine, as well as build up a relationship of trust necessary for the advance care planning about the end of life. Healthcare professionals should also receive support in ethical reasoning to meet these challenges and handle potential moral distress in the dialysis context.

Facilitating family needs and support at the end of life in hospital: A descriptive study

2021 ◽  
pp. 026921632110664
Author(s):  
Melissa J Bloomer ◽  
Peter Poon ◽  
Fiona Runacres ◽  
Alison M Hutchinson
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
General Medicine ◽  
Descriptive Study ◽  
Life Care ◽  
Family Needs ◽  
Next Of Kin ◽  
Dying Patients

Background: Caring for family members of dying patients is a vital component of end-of-life care, yet family members’ needs at the end of life may be unmet. Aim: To explore hospital clinician assessment and facilitation of family needs and practices to support families at the end of life. Design: Descriptive study utilising a retrospective medical record audit. Setting and Sample: Undertaken in a large public hospital, the sample included 200 deceased patients from four specialities; general medicine ( n = 50), intensive care ( n = 50), inpatient palliative care ( n = 50) and aged rehabilitation ( n = 50). Data were analysed according to age; under 65-years and 65-years or over. Results: Deceased patients’ mean age was 75-years, 60% were Christian and Next-of-Kin were documented in 96% of cases. 79% spoke English, yet interpreters were used in only 6% of cases. Formal family meetings were held in 64% of cases. An assessment of family needs was undertaken in 52% of cases, and more likely for those under 65-years ( p = 0.027). Cultural/religious practices were supported/facilitated in only 6% of all cases. Specialist palliative care involvement was more likely for those aged 65-years or over ( p = 0.040) and social work involvement more likely for those under 65-years ( p = 0.002). Pastoral care and bereavement support was low across the whole sample. Conclusions: Prioritising family needs should be core to end-of-life care. Anticipation of death should trigger routine referral to support personnel/services to ensure practice is guided by family needs. More research is needed to evaluate how family needs assessment can inform end-of-life care, supported by policy.

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.

Improving the End-of-Life Experience for Family Members of Cancer Patients Who Die on the Oncology Ward: The Three Wishes Project (SCI922)

2021 ◽  
Vol 61 (3) ◽  
pp. 681-682
Author(s):  
Gwenyth Day ◽  
Marilyn Swinton ◽  
Danielle Bear ◽  
Peter Phung ◽  
Allegra Bell ◽  
...  
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Life Experience ◽  
Family Members ◽  
Oncology Ward

End-of-Life Needs of Dying Patients and Their Families in Mainland China: A Systematic Review

2021 ◽  
pp. 003022282199734
Author(s):  
Guobin Cheng ◽  
Chuqian Chen
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Web Of Science ◽  
Empirical Studies ◽  
Symptom Control ◽  
Mainland China ◽  
Spiritual Needs ◽  
Care Needs ◽  
Dying Patients

Objective To map the current research status and understand existing findings regarding end-of-life care needs in Mainland China. Method First-hand, empirical studies on the needs of dying patients and/or their families in Mainland China were searched in Web of Science, Scopus, Proquest, Taylor & Francis Online and CNKI in December 2019. Findings were synthesized. Results A total of 33 (10 qualitative) studies were involved. Chinese dying patients and their families had physical, psychological, social, and spiritual needs and needs for knowledge and information. Prevalent needs of dying patients were mainly symptom control and decent look, being treated kindly by professional caregivers, family accompany, dignity, and comfortable environment. Families mainly need healthcare professionals to take good care of patients and wishes for information, knowledge, and facilities to help themselves become better caregivers. Conclusions Findings lay the foundation for effective and tailored services for Chinese clients and provided insights for future investigations.

scholarly journals Course and predictors of posttraumatic stress-related symptoms among family members of deceased ICU patients during the first year of bereavement

Critical Care ◽  
2021 ◽  
Vol 25 (1) ◽  
Author(s):  
Siew Tzuh Tang ◽  
Chung-Chi Huang ◽  
Tsung-Hui Hu ◽  
Wen-Chi Chou ◽  
Li-Pang Chuang ◽  
...  
Keyword(s):  
Social Support ◽  
Posttraumatic Stress ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Life Care ◽  
Ptsd Symptoms ◽  
Icu Patients ◽  
Clinically Significant ◽  
Bereaved Family

Abstract Background/Objective Death in intensive care units (ICUs) may increase bereaved family members’ risk for posttraumatic stress disorder (PTSD). However, posttraumatic stress-related symptoms (hereafter as PTSD symptoms) and their precipitating factors were seldom examined among bereaved family members and primarily focused on associations between PTSD symptoms and patient/family characteristics. We aimed to investigate the course and predictors of clinically significant PTSD symptoms among family members of deceased ICU patients by focusing on modifiable quality indicators for end-of-life ICU care. Method In this longitudinal observational study, 319 family members of deceased ICU patients were consecutively recruited from medical ICUs from two Taiwanese medical centers. PTSD symptoms were assessed at 1, 3, 6, and 13 months post-loss using the Impact of Event Scale-Revised (IES-R). Family satisfaction with end-of-life care in ICUs was assessed at 1 month post-loss. End-of-life care received in ICUs was documented over the patient’s ICU stay. Predictors for developing clinically significant PTSD symptoms (IES-R score ≥ 33) were identified by multivariate logistic regression with generalized estimating equation modeling. Results The prevalence of clinically significant PTSD symptoms decreased significantly over time (from 11.0% at 1 month to 1.6% at 13 months post-loss). Longer ICU stays (adjusted odds ratio [95% confidence interval] = 1.036 [1.006, 1.066]), financial insufficiency (3.166 [1.159, 8.647]), and reported use of pain medications (3.408 [1.230, 9.441]) by family members were associated with a higher likelihood of clinically significant PTSD symptoms among family members during bereavement. Stronger perceived social support (0.937 [0.911, 0.965]) and having a Do-Not-Resuscitate (DNR) order issued before the patient’s death (0.073 [0.011, 0.490]) were associated with a lower likelihood of clinically significant PTSD symptoms. No significant association was observed for family members’ satisfaction with end-of-life care (0.988 [0.944, 1.034]) or decision-making in ICUs (0.980 [0.944, 1.018]). Conclusions The likelihood of clinically significant PTSD symptoms among family members decreased significantly over the first bereavement year and was lower when a DNR order was issued before death. Enhancing social support and facilitating a DNR order may reduce the trauma of ICU death of a beloved for family members at risk for developing clinically significant PTSD symptoms.

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