This document summarizes research on the meaning of "family" in the context of death and organ donation on intensive care units. The research involved interviews with 13 donor families and over 100 ICU staff across 5 hospitals. The research found that family is a fluid concept that expands and contracts depending on the phase of end of life care and decisions that need to be made. ICU staff sometimes viewed family in more rigid legal terms, which could limit cultural understandings of family's role in end of life decisions and organ donation consent.
Background: Depression, which frequently onsets in young people, is projected to become the largest single burden of disease globally in the next decade.
Background: Depression, which frequently onsets in young people, is projected to become the largest single burden of disease globally in the next decade.
End of life issues in advanced heart failure manalo palliative careDr. Liza Manalo, MSc.
Why aren’t countries accountable to commitment on end of life (#EOL) care for vulnerable people?
For lack of know-how. This presentation aims to teach cardiologists how to provide good palliative care to their patietnts.
Solidarity between survivor and trade union activists: organising for democratic alliances by Mick McKeown - a presentation from the symposium on social movements and their contributions to sociological knowledge on mental health at the University of Wolverhampton. Held on 13 June 2014.
Presentation by Kate Spiegelhalter at Sociology of Mental Health Study Group symposium: What does sociology need to contribute towards or against the wellbeing agenda? on 10 June 2013.
Commentary on identities and ideologies in the women’s and service user/survivor movements by Dr Lydia Lewis - a presentation from the symposium on social movements and their contributions to sociological knowledge on mental health at the University of Wolverhampton. Held on 13 June 2014.
Food and Climate Change presentation by Jessica Paddock at the BSA Climate Change Study Group Conference on 17 January 2011 at the British Library Conference Centre, London, UK.
End of life issues in advanced heart failure manalo palliative careDr. Liza Manalo, MSc.
Why aren’t countries accountable to commitment on end of life (#EOL) care for vulnerable people?
For lack of know-how. This presentation aims to teach cardiologists how to provide good palliative care to their patietnts.
Solidarity between survivor and trade union activists: organising for democratic alliances by Mick McKeown - a presentation from the symposium on social movements and their contributions to sociological knowledge on mental health at the University of Wolverhampton. Held on 13 June 2014.
Presentation by Kate Spiegelhalter at Sociology of Mental Health Study Group symposium: What does sociology need to contribute towards or against the wellbeing agenda? on 10 June 2013.
Commentary on identities and ideologies in the women’s and service user/survivor movements by Dr Lydia Lewis - a presentation from the symposium on social movements and their contributions to sociological knowledge on mental health at the University of Wolverhampton. Held on 13 June 2014.
Food and Climate Change presentation by Jessica Paddock at the BSA Climate Change Study Group Conference on 17 January 2011 at the British Library Conference Centre, London, UK.
Family systems as sites of psychopathology: a critical realist account by David Pilgrim PhD, Professor of Health and Social Policy, University of Liverpool - presented at the BSA Medical Sociology Annual Conference 2014, Aston University.
Presentation by Helen Spandler at Sociology of Mental Health Study Group symposium: What does sociology need to contribute towards or against the wellbeing agenda? on 10 June 2013.
Organ donation, ethnicity and the negotiation of death: ethnographic insights from the UK by Jessie Cooper and Ciara Kieran - a presentation at the BSA Death, Dying and Bereavement Study Group Conference in November 2014.
Negotiating personal networks: lesbian, gay, bisexual and trans older people’s networks of support towards the end of life by Kathryn Almack - a presentation at the BSA Death, Dying and Bereavement Study Group Conference in November 2014.
Exploring responses to death in varying cultural contexts: adopting a reflexive approach by Ruth Evans, Jane Ribbens McCarthy, Sophie Bowlby, Joséphine Wouango and Fatou Kébé - a presentation at the BSA Death, Dying and Bereavement Study Group Conference in November 2014.
Re-Conceptualising Adult Orphans: A Scoping Literature Review by Rosaline S Barbour, Carol Komaromy, Bethany Morgan-Brett and Michael Barbour a presentation from the BSA Sociology of Death, Dying and Bereavement Study Group Symposium on 15 November 2013.
A generative metaphor: Dying and death in young children’s imaginative play by Rachel Rosen a presentation from the BSA Sociology of Death, Dying and Bereavement Study Group Symposium on 15 November 2013.
Madness and the sociology of disablement: tensions and possibilities by Helen Spandler - a presentation from the symposium on social movements and their contributions to sociological knowledge on mental health at the University of Wolverhampton. Held on 13 June 2014.
Exploring Implications of the Impact of Mental Health Issues on Those Experiencing Domestic Violence in Same Sex and/or Trans Relationships, Catherine Donovan - a presentation at the A Difficult Alliance? Making Connections between Mental Health and Domestic Violence Research and Practice Agendas on 7 June 2011
Recommendations for end-of-life care in the intensive care uni.docxdanas19
Recommendations for end-of-life care in the intensive care unit:
The Ethics Committee of the Society of Critical Care Medicine
Robert D. Truog, MD; Alexandra F. M. Cist, MD; Sharon E. Brackett, RN, BSN; Jeffrey P. Burns, MD;
Martha A. Q. Curley, RN, PhD, CCNS, FAAN; Marion Danis, MD; Michael A. DeVita, MD;
Stanley H. Rosenbaum, MD; David M. Rothenberg, MD; Charles L. Sprung, MD; Sally A. Webb, MD;
Ginger S. Wlody, RN, EdD, FCCM; William E. Hurford, MD
KEY WORDS: palliative care; intensive care; end-of-life care
T hese recommendations are in-tended to provide informationand advice for clinicians whodeliver end-of-life care in in-
tensive care units (ICUs). The number of
deaths that occur in the ICU after the
withdrawal of life support is increasing,
with one recent survey finding that 90%
of patients who die in ICUs now do so
after a decision to limit therapy (1). Al-
though there is significant variability in
the frequency of withdrawal of life sup-
port both within countries (2) and among
cultures (3), the general trend is interna-
tional in scope (4). Nevertheless, most
evidence indicates that patients and fam-
ilies remain dissatisfied with the care
they receive once a decision has been
made to withdraw life support (5). Al-
though intensive care clinicians tradi-
tionally have seen their goals as curing
disease and restoring health and func-
tion, these goals must now expand when
necessary to also include assuring pa-
tients of a “good death.” Just as develop-
ments in knowledge and technology have
dramatically enhanced our ability to re-
store patients to health, similar develop-
ments now make it possible for almost all
patients to have a death that is dignified
and free from pain.
The management of patients at the
end of life can be divided into two phases.
The first concerns the process of shared
decision-making that leads from the pur-
suit of cure or recovery to the pursuit of
comfort and freedom from pain. The sec-
ond concerns the actions that are taken
once this shift in goals has been made
and focuses on both the humanistic and
technical skills that must be enlisted to
ensure that the needs of the patient and
family are met. Although both of these
issues are critically important in end-of-
life care, the decision-making process is
not unique to the ICU environment and
has been addressed by others (6 –11).
These recommendations, therefore, do
not deal primarily with the process that
leads to the decision to forego life-
prolonging treatments but rather focus
on the implementation of that decision,
with particular emphasis on the ICU en-
vironment.
This division of the process into two
phases is necessarily somewhat artificial.
Patients and families do not suddenly
switch from the hope for survival and
cure to the acceptance of death and pur-
suit of comfort. This process happens
gradually over varying periods of time
ranging from hours to weeks. Similarly,
the forgoing of life-sustaining treatments
rarely happens all at onc.
Through the Eyes of Taiwanese Palliative Care Providers: End-of-life Treatmen...inventionjournals
The growth of medical knowledge and enhanced technology has increasingly blurred the line between life and death. Resuscitation procedures and life-sustaining devices such as mechanical ventilators, defibrillators, hemodialysis, and parenteral nutrition were introduced just a few decades ago, but have brought significant changes to the treatment of EOL patients. These treatments have given physicians the ability to prolong the process of dying; yet, the decision of when and how to use them has become complicated. An understanding of these controversial life-sustaining procedures and knowledge of current legal guidelines in the American EOL treatment context is necessary when palliative care in Taiwan seems to follow the Western experience in legislation regarding life-sustaining treatment. In this article, how EOL decisions made in the United States is summarized through the eyes of Taiwanese palliative care providers.
One of the books, published when I was Founding Director and General Manager at SingHealth Academy.
It chronicles stories about Blood Stem Cell Transplants at SingHealth and the excellent work of healthcare professionals, the ecosystem of support for patients and the journeys of patients.
httpajl.sagepub.comAmerican Journal of Lifestyle Medici.docxAASTHA76
http://ajl.sagepub.com/
American Journal of Lifestyle Medicine
http://ajl.sagepub.com/content/early/2013/08/12/1559827613498065
The online version of this article can be found at:
DOI: 10.1177/1559827613498065
published online 13 August 2013AMERICAN JOURNAL OF LIFESTYLE MEDICINE
Carolyn M. Tucker, Tya M. Arthur, Julia Roncoroni, Whitney Wall and Jackeline Sanchez
Patient-Centered, Culturally Sensitive Health Care
Published by:
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What is This?
- Aug 13, 2013OnlineFirst Version of Record >>
at UNIV OF FLORIDA Smathers Libraries on May 10, 2014ajl.sagepub.comDownloaded from at UNIV OF FLORIDA Smathers Libraries on May 10, 2014ajl.sagepub.comDownloaded from
1
vol. XX ! no X American Journal of Lifestyle Medicine
Abstract: In recent years, there
have been increasing national calls
for patient-centered, culturally
sensitive health care (PC-CSHC). The
impetus for these calls include (a)
the reality that health care providers
are increasingly having to provide
health care to a more culturally
diverse patient population without
the necessary training to do so
effectively, (b) the growing evidence
that culturally insensitive health care
is a major contributor to the costly
health disparities that plague our
nation, and (c) the fact that racial/
ethnic minorities and individuals
with low household incomes are more
likely than their non-Hispanic white
and higher-income counterparts
to experience culturally insensitive
health care and dissatisfaction with
health care—health care experiences
that have been linked to poorer health
outcomes. This article (a) presents
literature on the definition of PC-
CSHC and the need for this care, (b)
presents research on assessing and
promoting this care, and (c) offers
research-informed strategies and
future directions for customizing and
institutionalizing this care.
Keywords: patient-centered culturally
sensitive health care; health disparities;
patient-provider relationships;
assessments; health care quality
Definition of Patient-
Centered Culturally
Sensitive Health
Care (PC-CSHC)
Cultural Sensitivity Versus
Cultural Competence
Culturally sensitive health care has been
described as health care that effectively
responds to the attitudes, feelings, and
circumstances of people that share
common identifying characteristics (eg,
race, religion, language, and
socioeconomic status) and health care
that patients perceive as being concordant
with their cultural values and beliefs.1
Cultural sensitivity encompasses the
related concept of cultural competence,
which is often used to describe.
Considerations when deciding about withholding or withdrawing life-sustaining...Dr. Liza Manalo, MSc.
Towards the end of life, physicians face dilemmas of discontinuing life-sustaining treatments or interventions. In some circumstances, these treatments are no longer of benefit, while in others the patient or family no longer want them. The physician plays an essential role in clarifying the goals of medical treatment, defining the care plan, initiating discussions about life-sustaining therapy, educating patients and families, helping them deliberate, making recommendations, and implementing the treatment plan. Communication is key. It should be clarified that when inevitable death is imminent, it is legitimate to refuse or limit forms of treatment that would only secure a precarious and burdensome prolongation of life, for as long as basic humane, compassionate care is not interrupted. Agreement to DNR status does not preclude supportive measures that keep patients free from pain and suffering as possible. Acceptable clinical practice on withdrawing or withholding treatment is based on an understanding of the medical, ethical, cultural, and religious issues. There is a need to individualize care option discussions to illness status, and patient and family preferences, beliefs, values, and cultures. The process of shared decision making between the patient, the family, and the clinicians should continue as goals evolve and change over time.
The London Assembly Health Committee has investigated the quality of care people receive at the end of their life. Does good end of life care depend on your age, whether you live alone, your diagnosis or economic status? Read the digital report's finding and recommendations.
Perioperative Management of the Pediatric Organ Donorasclepiuspdfs
Introduction: For bereaved families, organ donation does not take away from the pain and loss of death, but it does give some meaning at the time and a great deal of comfort later. Each and every family whose child has suffered brain stem death should be offered the chance to donate. When a diagnosis of brain death has been made in a child, it may be possible for organ donation to occur, but it requires optimization of the donor and meticulous planning. There are a number of medical, nursing, ethical, psychological, and administrative issues which must be addressed in the perioperative period to facilitate the procurement of organs in good condition. Aim: This review aims to provide up to date information and provides the clinical pathway used in our tertiary level, university-affiliated children’s hospital for the management of the child in the critical care unit before organ donation, and intraoperative anaesthetic management. Method: This review was prepared using literature and clinical guidelines which were obtained from Medline and EMBASE databases, using the following search terms: Organ donation; intensive care management of organ donor; paediatric; neonatal; transplant outcome; and graft outcome. The focused literature search was carried out in 2017 by the five authors involved in the project. Results: The Society of Critical Care Medicine published consensus based guidelines for donor management in adult patients in 2015. Many of the core critical care principles in this document are similar in infants and children; although there are different considerations with respect to the diagnosis of brain death, consent, and pharmacological management. Full-text papers were employed by the project group to update our clinical pathway for the perioperative management of the infant or child who is a potential organ donor. Providing critical care medical and nursing staff with a pathway may improve communication, confidence, and delivery of care to the deceased child, their family and the graft recipients in this challenging situation.
Similar to Meanings of the family in the context of death and organ donation on intensive care units by Charlotte Kenten, Magi Sque, Myfanwy Morgan (20)
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“Had he had cancer I’d have been fine”: inequalities in care provision at the...
Meanings of the family in the context of death and organ donation on intensive care units by Charlotte Kenten, Magi Sque, Myfanwy Morgan
1. Meanings of the ‘family’ in the
context of death and organ donation
on intensive care units
Charlotte Kenten1
Magi Sque2
Myfanwy Morgan1
1 King’s College London, Dept of Primary Care and Public Health Sciences
2 School of Health and Wellbeing, University of Wolverhampton and The Royal Wolverhampton Hospitals NHS Trust
2. Abstract
The family in its multiple and shifting guises is a constant in the life
course but often increases in prominence at specific points,
including at the end of life. We will focus on one specific end of life
experience for families, the death of a relative on an Intensive Care
Unit (ICU) who is clinically suitable to be an organ donor. In the UK
donation only proceeds if the family provide formal consent.
2
3. Abstract continued
This paper examines the notion of ‘family’ around this time of acute
bereavement and specifically in relation to breaking bad news,
approaching for consent and decisions about organ donation with Black
and South Asian minority ethnic groups. Qualitative research was
undertaken involving semi-structured interviews with 13 donor families,
over 100 interviews with ICU staff and observations across five English
hospital Trusts undertaken as part of the DonaTE Research Programme.
These data indicate how the ‘family’ is fluid and negotiated; beyond the
immediate and usually biological family, it expands to include extended
family, friends and acquaintances or contracts to core members
depending on the phase of end of life care, the decisions that need to be
made and closeness to death/donation.
3
4. Abstract continued
In contrast ICU staff, often perceived family in more rigid terms,
tempered by legal definitions and practical considerations with,
at times, limited or limiting cultural understandings of the role of
‘family’ at the end of life, and employed various strategies to
manage the often large number of ‘family’ members and
communicate with key decision makers.
4
5. Disclaimer
This presentation presents independent research funded by
the National Institute for Health Research (NIHR) under its
Programme Grant for Applied Research programme
(Reference Number: RP-PG-0707-10123). The views
expressed in this presentation are those of the authors and
not necessarily those of the NHS, the NIHR or the
Department of Health.
5