The Medical Futility Debate: Patient Choice, Physician Obligation, and End-of-Life Care

2002 ◽  
Vol 5 (2) ◽  
pp. 249-254 ◽  
Author(s):  
Robert A. Burt
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Medical Futility ◽  
Patient Choice ◽  
Life Care

scholarly journals Pediatric-Specific End-of-Life Care Quality Measures: An Unmet Need of a Vulnerable Population

2017 ◽  
Vol 13 (10) ◽  
pp. e874-e880 ◽  
Author(s):  
Emily E. Johnston ◽  
Abby R. Rosenberg ◽  
Arif H. Kamal
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Quality Measures ◽  
Care Quality ◽  
Patient Choice ◽  
Decision Makers ◽  
Hospital Death ◽  
Life Care ◽  
High Quality ◽  
National Quality

We must ensure that the 20,000 US children (age 0 to 19 years) who die as a result of serious illness annually receive high-quality end-of-life care. Ensuring high-quality end-of-life care requires recognition that pediatric end-of-life care is conceptually and operationally different than that for adults. For example, in-hospital adult death is considered an outcome to be avoided, whereas many pediatric families may prefer hospital death. Because pediatric deaths are comparatively rare, not all centers offer pediatric-focused palliative care and hospice services. The unique psychosocial issues facing families who are losing a child include challenges for parent decision makers and young siblings. Furthermore, the focus on advance directive documentation in adult care may be less relevant in pediatrics because parental decision makers are available. Health care quality measures provide a framework for tracking the care provided and aid in agency and provider accountability, reimbursement, and educated patient choice for location of care. The National Quality Forum, Joint Commission, and other groups have developed several end-of-life measures. However, none of the current quality measures focus on the unique needs of dying pediatric patients and their caregivers. To evolve the existing infrastructure to better measure and report quality pediatric end-of-life care, we propose two changes. First, we outline how existing adult quality measures may be modified to better address pediatric end-of-life care. Second, we suggest the formation of a pediatric quality measure end-of-life task force. These are the next steps to evolving end-of-life quality measures to better fit the needs of seriously ill children.

Medical Futility in End-of-Life Care

JAMA ◽  
1999 ◽  
Vol 282 (14) ◽  
pp. 1331-1332 ◽  
Author(s):  
A. Halevy
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Medical Futility ◽  
Life Care

End-of-Life Care: A Philosophical or Management Problem?

2011 ◽  
Vol 39 (2) ◽  
pp. 114-120 ◽  
Author(s):  
Daniel Callahan
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Technological Progress ◽  
Patient Choice ◽  
Living Wills ◽  
Management Problem ◽  
Life Care ◽  
Or Management ◽  
Hospice Movement ◽  
The 1960S

Early in 1970, just as we were organizing The Hastings Center, we had to decide which issues on a long menu of possibilities should receive our early attention. At the top of our list was end-of-life care. Complaints about care for the dying had mounted during the 1960s, fueled by technological progress in sustaining life, by too many patients abandoned by physicians as they lay dying, by a lack of patient choice on how their lives should end, and by woefully inadequate pain management. After a few years of study, the care of the dying seemed to admit of a solution: giving patients more choice by the use of living wills or appointment of a surrogate, improving the training of physicians to better deal with death and discussion with patients, and creating a hospice movement and greatly enhanced palliative care.

scholarly journals End-of-life care and dementia

2005 ◽  
Vol 15 (2) ◽  
pp. 135-148 ◽  
Author(s):  
Louise Robinson ◽  
Julian Hughes ◽  
Sarah Daley ◽  
John Keady ◽  
Clive Ballard ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Current Knowledge ◽  
Patient Choice ◽  
Life Care ◽  
Current Standard ◽  
People With Dementia ◽  
National Service Framework ◽  
The Usa ◽  
The Uk

In the UK, research continues to confirm that people with certain chronic illnesses, such as chronic lung disease and cardiac failure, represent the ‘disadvantaged dying’ compared to those with terminal cancer. But what is the situation for people dying with advanced dementia and what is the experience of their carers? Practical guidance for clinicians is scarce. In Standard 7 of the National Service Framework for Older People, which covers mental health, there is mention neither of how care should be provided nor of how patient choice should be ensured for people with dementia at the end of life. In the UK, 5% of the population aged 65 and over and 20% of those aged 80 and over have dementia similar prevalence figures are found in the USA. Current predictions suggest that the number of people with dementia will increase by 40% by 2026 and will double by 2050. The increased demand for end-of-life care for people with dementia will be associated with major social and economic costs, but what is the current standard of such care? How can the quality be improved? And how should future services be configured to cope with this increasing need? In this paper, we review current knowledge around end-of-life care in dementia, discuss the clinical challenges and ethical dilemmas presented to carers, consider the difficulties in delivering such care and suggest practical approaches to improve the quality of such care.

St Christopher's and the Future

2008 ◽  
Vol 56 (1) ◽  
pp. 63-75 ◽  
Author(s):  
Barbara Monroe ◽  
Penny Hansford ◽  
Malcolm Payne ◽  
Nigel Sykes
Keyword(s):  
Health Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Health Care Services ◽  
Care Service ◽  
Health Care Service ◽  
Cost Effective ◽  
Patient Choice ◽  
Life Care ◽  
Effective Models

The founding vision of St Christopher's Hospice was based on a recognition that permeating mainstream health care services would be essential and an emphasis on an adaptable philosophy rather than a building. Today, demographic and disease related changes mean that need and demand for end-of-life care will inevitably outstrip professional and financial resource. Hospices must engage with the development of cost-effective models of service delivery and rational planning. Only partnership working with the National Health Service, care homes, and others will ensure that appropriate care is available to everyone wherever the bed in which they die, regardless of diagnosis. Only collaboration and active engagement will ensure that future strategy in end-of-life care retains the original insight that its focus rightly includes not only patients but also the social context that will be affected by their death. Cost and patient choice dictate an emphasis on care at home. Health-promoting, public education and family-focused strategies will be essential. At a pivotal moment for the delivery of health care generally, hospices can play a vital part by marrying the role of “insistent conscience” of the health care service with continued cost-effective clinical innovation.

scholarly journals Nurses’ Experiences in End-of-Life Care in the PICU: A Qualitative Systematic Review

2018 ◽  
Vol 32 (1) ◽  
pp. 12-22 ◽  
Author(s):  
Pei-Fan Mu ◽  
Yun-Min Tseng ◽  
Chia-Chi Wang ◽  
Yi-Ju Chen ◽  
Shu-He Huang ◽  
...  
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
End Of Life Care ◽  
Moral Distress ◽  
Pediatric Intensive Care ◽  
Medical Futility ◽  
Life Care ◽  
Qualitative Systematic Review ◽  
The Subject ◽  
Recommendations For Practice

The experiences of end-of-life care by nurses in the pediatric intensive care unit are the subject of this systematic review. Six qualitative articles from three different countries were chosen for the review using methods from Joanna Briggs Institute. The themes discovered included the following: insufficient communication, emotional burden, moral distress from medical futility, strengthening resilience, and taking steps toward hospice. These themes are discussed in detail followed by recommendations for practice to assist nurses in their quest for a good death for their pediatric patients.

scholarly journals Exploring Nurses' Attitudes About the Value of a Hospital Based Medical Futility Policy

2016 ◽  
Author(s):  
Christie Bowser
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Moral Distress ◽  
Vegetative State ◽  
Persistent Vegetative State ◽  
Medical Futility ◽  
Difficult Case ◽  
Life Care ◽  
Expected Outcome ◽  
Difficult Cases

<p>Nurses are responsible for providing care for patients and following through with a physician’s orders, however, it is not always easy to do. Certain cases are more difficult than others, especially those involving end-of-life care versus continuing with life-sustaining measures. It is not an easy decision for families or patients to make, but sometimes these life-sustaining interventions can do more harm than good, causing much distress among caregivers (Burns & Truog, 2007). Some cases have become hallmark cases like that of Terri Schiavo, a woman who was in a persistent vegetative state from 1990 to 2005 while her parents and husband fought between keeping her alive or letting her go peacefully (Quill, 2005). Another difficult case in 2007 involved a toddler, Emilio Gonzales, whose mother fought for more time with her child rather than removing the ventilator (Cohen, 2007).</p> <p>Defining futility and its role in healthcare has been an ongoing issue since the 1980s. For the purpose of this research paper, futility is defined as “treatment or clinical interventions that are not likely to result in benefit to the patient or produce the expected outcome” (Terra & Powell, 2012, p. 103). Nurses can suffer from moral distress when they are obligated to provide life-sustaining interventions to patients that have a small chance of benefiting from them. Nurses may experience less frustration and moral distress if hospitals implement a futility policy that provides guidance in these difficult cases. The purpose of this study is to explore nurses' attitudes regarding a hospital-based medical futility policy. </p>

scholarly journals Improving rates of implantable cardioverter defibrillator deactivation in end-of-life care

2018 ◽  
Vol 7 (2) ◽  
pp. e000254 ◽  
Author(s):  
MR Javaid ◽  
Suzanne Squirrell ◽  
Fahad Farooqi
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
District General Hospital ◽  
Care Patient ◽  
Patient Choice ◽  
Grand Round ◽  
Implantable Cardioverter Defibrillators ◽  
Life Care ◽  
National Guidelines

Implantable cardioverter defibrillators (ICDs) save lives in selected patients at risk of sudden cardiac death. However, in patents suffering with terminal illness, ICD therapy could pose a risk of unnecessary futile shocks which could lead to undignified discomfort in their final days of life. National guidelines advise that patients approaching the end of their natural life should be offered a compassionate choice of having their defibrillator deactivated. Following an actual clinical incident involving a patient receiving avoidable ICD shocks in his final hours, we identified shortcomings in communication and gaps in knowledge about ICD management in end-of-life care. We developed a quality improvement programme targeting training and educational support to general physicians and nurses at our large District General Hospital. A series of interventions were delivered including Grand Round presentation, departmental seminars and publicity posters. In parallel, we introduced a local protocol for implementing ICD deactivation which was published on our intranet for Trust-wide accessibility. Following interventions, we examined the clinical notes of each end-of-life care patient who died with an ICD in situ over a 6-month observation period and recorded the proportion who received consent-guided ICD deactivation versus died with an active ICD in situ because no deactivation discussion had been offered. Before our interventions in 2015, 0 out of 10 eligible patients (0%) received consent-guided ICD deactivation. Six months into our campaign to encourage healthcare workers to undertake advance care planning discussion in 2016, 7 out of 13 eligible patients (54%) received consent-guided ICD deactivation and no patients received shocks in their final month of life. This programme was successful in raising awareness of this emerging issue, improving physician knowledge and delivering patient choice as well as contributing to safe and compassionate end-of-life care.

Sign in / Sign up

Export Citation Format

Share Document