BMC MEDICAL ETHICS | Online – 14 January 2016 – This study reveals variation among nursing home doctors in how they involve patients and next of kin in end-of-life decisions, and many important decisions appear arbitrary and not based on systematic ethical reflections. Not uncommonly, the next of kin are given greater decision-making authority than they should have, sometimes also leading to interventions which are contrary to the patient’s will and best interests. The few doctors who involve the patients in advance care planning as part of their routines described that they always had found this to be a good thing to do. The results underline a great need for education and supervision in ethics, law and communication for nursing home doctors, to improve the decision-making processes and avoid large and haphazard variations in practice. Improved routines for involvement of patient and next of kin may save time, energy and resources, prevent conflicts, and lead to decisions in line with the patient’s values and preferences. It is not acceptable that coincidences decide whether patients are met with treatment nihilism or are provided treatment that the patient or the doctor feel is not for the best of the patient.
INTERNATIONAL JOURNAL OF COMMUNITY BASED NURSING & MIDWIFERY, 2016; 4 (1) :1-10. There has been an increasing recognition of the importance of death education for nursing and allied health professionals. Coincident with the need for heightened training in optimizing death and dying care is a curriculum that addresses emotion awareness and regulation for providers. Given the tendencies for the modern health care enterprise to focus on prolonging life, it is not surprising that death and dying curriculum exposure has not been prioritized or uniformly applied in educational programs. Globally a large number of patients continue to die in hospital or nursing home settings despite preferences to die in home environments. It is recommended that programs on death education be expanded, with a focus on the multifaceted experience of death anxiety as a normative occurrence for health care workers. These programs need to occur not only in the formative educational process, but also as a part of orientation for new staff members, and as refreshers for more experienced nurses. Such an emphasis may reduce the culture of death as a taboo topic for health care workers, and may increase quality of communications and thus perceptions of care between health care professionals and their patients and family members.
JAMA ONCOLOGY | Online – 30 January 2016 – The authors found that initiating palliative care (PC) in the emergency department (ED) for patients with advanced cancer improved quality of life (QOL) and did not seem to shorten survival. Given the diversity of the ED population and its often limited access to specialty care, this is an important place to initiate PC consultation. The impact on depression, hospital days, ICU admission, and hospice is less clear, and better ways of measuring whether care plans are congruent with patient goals are sorely needed.
JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION | Online – 19 January 2016 – This is the first international comparative study to the authors’ knowledge of site of death, health care utilization, and hospital expenditures at the end of life. All 7 nations had high rates of hospital admissions and hospital days near the end of life. The U.S. had the lowest proportion of decedents with cancer dying in acute care hospitals. Norway and England had higher rates of in-hospital deaths, hospital admissions, and hospital days, and Norway had among the highest hospital expenditures, but England had among the lowest. The authors found similar patterns in the larger cohort of decedents of any age and the more homogeneous cohort of decedents older than 65 years with lung cancer, suggesting that the differences observed are likely driven more by end-of-life care practices and organization rather than differences in cohort identification. Four points are worth emphasizing. First, three broad patterns of end-of-life care emerged in the 7 countries examined. Decedents in Belgium, Canada, Germany, and Norway received more hospital-centric care with correspondingly high expenditures for hospitalizations, where hospital-centric implies higher rates of death in acute care hospitals and other measures of inpatient utilization. End-of-life care in England was hospital-centric but at a lower cost. Decedents in the U.S. and The Netherlands received care in acute care hospitals less often and for fewer days, although hospital expenditures near the end of life in the U.S. were higher (commensurate with expenditures in Canada and Norway), while hospital expenditures in The Netherlands were lower. Second, the U.S. had the lowest proportion of patients dying in the hospital. Third, the U.S. was prominent in its use of expensive, resource-intense services at the end of life. Fourth, this study collected a wide variety of data on decedents across 7 developed countries.
THE LANCET, 2016; 387 (10013):2. The National Institute for Health & Care Excellence (NICE) published its first guideline in response to the Neuberger review of the controversial Liverpool Care Pathway (LCP), and the Department of Health’s follow-up report 1,2,3. The LCP, an algorithm for the physical, psychological, social, and spiritual care of people who were dying, had been widely criticized by the U.K. media and some patients’ families for poor implementation, with particular concerns around recognition of when people were dying, and inappropriate use of sedation and hydration. Although around three-quarters of deaths in England each year are expected, our understanding of dying is poor. Recent decades have seen changes in the way people die, from different causes, at older ages with more comorbidities, and with friends and carers taking on increased importance as family structures have changed. The NICE guideline ... sought to address gaps in understanding by consultation with a wide variety of experts, from palliative care consultants and specialist district nurses to end-of-life (EOL) doulas. The guideline could be criticized as simply repackaging the LCP with changed emphasis on individualized care instead of the proforma, one-size-fits-all approach. But there is something hopeful about this new guideline. With recommendations on how to recognize when someone is dying, communication, shared decision making, and appropriate use of fluids and drugs, the guideline places respect, conversation, and thoughtfulness at the heart of care. It does not address some of the more practical aspects of EOL care, e.g., pain management, and guidelines on implementation are expected in 2017.
1 ‘Care of Dying Adults in the Last Days of Life,’ NICE, December 2015. [Noted in Media Watch, 21 December 2015, #441 (p.7)]
2 ‘Review of Liverpool Care Pathway for Dying Patients,’ Department of Health, July 2013. [Noted in Media Watch, 22 July 2013, #315 (p.6)]
3 ‘One Chance to Get it Right: Improving People’s Experience of Care in the Last Few Days and Hours of Life’, Leadership Alliance for the Care of Dying People, June 2014. [Noted in Media Watch, 30 June 2014, #364 (p.7)]
Media Watch is intended as an advocacy and research tool. The weekly report, published by Barry R. Ashpole, a Canadian communications consultant and educator, monitors the literature and the lay press on issues specific to the quality of end-of-life care. It is international in scope and distribution. Each month, this section of the IAHPC Newsletter will publish an abstract or summary of an article or report of special interest noted in a recent issue of Media Watch (see below).