Media Watch is intended as an advocacy, education, 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 publishes selected abstracts or summaries of articles or reports of special interest from recent issues of Media Watch.
Note: Two publications have recently published thematic issues on end-of-life care:
Palliative Care in Dementia, Palliative Medicine (Vol 32, Issue 3)
Pediatric Palliative Care, Children
BJA Education | Online – 2 March 2018 – The European paediatric resuscitation guidelines 2000 have since undergone a number of sequential changes, during updates in 2005, 2010, and 2015. During this time, survival to return of spontaneous circulation has increased to 77% and survival to hospital discharge to 44%, for in-hospital cardiac arrests. This article reviews the current (2015) guidelines for healthcare professionals. It also highlights evidence behind key changes undertaken since the year 2000.
BMC Palliative Care | Online – 15 March 2018 – Auditing the care provided in the resident’s last month of life aims to improve care through the identification of ineffective practices, enhance the quality of training provided to staff, and ensure the effective use of resources; all of which have the potential to change practice... [T]here is a general recognition for the need to develop brief, quality measures for end-of-life care (EoLC). Also, gathering timely information is needed in order to monitor and improve the quality of EoLC, including valid and reliable data about the care provided, the recipients, the facilities, and the caregivers. By developing a brief chart audit tool that captures best practices derived from expert consensus and the research literature, nursing home facilities will be equipped with a valid means for monitoring and assessing the care delivered to residents in the last month of life. These assessments will help drive improvements in care by providing direction for staff education, the development of initiatives aimed at reducing ineffective practices, ensuring the optimal use of resources.
Canadian Medical Association Journal, 2018;190(9):E238-E246. Case fatality after total anterior circulation stroke is high. The authors’ objective was to describe the experiences and needs of patients and caregivers, and to explore whether, and how, palliative care (PC) should be integrated into stroke care. They conducted 99 interviews with 34 patients and their informal and professional carers and identified several major themes: patients and caregivers faced death or a life not worth living; those who survived felt grief for a former life; professionals focused on physical rehabilitation rather than preparation for death or limited recovery; future planning was challenging; and, “palliative care” had connotations of treatment withdrawal and imminent death. Major stroke brings likelihood of death but little preparation. Realistic planning with patients and informal caregivers should be offered, raising the possibility of death or survival with disability. Practising the principles of PC is needed, but the term “palliative care” should be avoided or reframed.
Asian Bioethics Review | Online – 14 March 2017 – Since the concept of the living wills emerged nearly 50 years ago, there have been practical challenges in translating the concept of an advance directive (AD) into documents that are clinically useful across various healthcare settings and among different patient populations and cultures. Especially challenging has been the reliance in most ADs on pre-selected “choices” about specific interventions which either revolve around broad themes (e.g., “prolong life /do not prolong life”) or whether or not to utilize particular interventions (e.g., CPR, mechanical ventilation), both of which about most laypersons know little and, more importantly, lacking context, prove to be of limited meaningfulness. Moreover, whether by foundational frame, decade-long misunderstanding in medicine and bioethics, or different societal customs, these ADs present decision-making responsibility for initiating, continuing, or withdrawing medical interventions as a patient responsibility – creating a burden for which most patients are unprepared – and hence reducing healthcare providers’ responsibility to mere technical application or customer service. At the authors’ institution, significant efforts have focused on embracing the unique and complementary responsibilities of patients (articulating their goals, values, and preferences) and physicians (using medical expertise to reach patient goals) for enabling appropriate plans of care. This includes restructuring its AD form to more accurately represent patients’ values as the frame within which physicians are responsible for determining appropriate care. Rather than specifying interventions, the AD makes patients responsible for specifying what matters to them as well as what they value in terms of function, interaction, and level of acceptable burden, thus providing clear goals for clinicians to pursue – or when goals are not reachable by available medical interventions, to acknowledge and allow for logical shifts to what may be achieved, including, in end of life contexts, care focused on respect and dignity.
Nursing & Palliative Care | Online – 2 March 2018 – The results [of this study] showed that it was important that the public health nurse (PHN) respected that they were a guest in the patient’s home, where the patient decides. This is in line with previous research, which found that the PHN should have an understanding of what the home symbolises for the patient. In order to practice nursing at home, the PHN was required to accept the patient’s lifestyle, culture and the way they have it at home... Care in the patient's home should be based on a caring science theory that the patient is at the centre of care and is an expert on herself... Care becomes more personal when it occurs at home and more on the patient’s terms, such that the PHN has to have increased consideration for patient self-determination and must support the patient's decision if the patient wants to be cared for in a hospital. The authors’ experience is that relatives often experience the situation at home as insecure, which causes some patients to be cared for in hospital. It is important to be aware of this.
Palliative Care: Research & Treatment | Online – 20 February 2018 – The authors observe, in clinical care, a disconnect between the science, including pharmacology, of the use of opioids and the practice of pain management. The biggest variable seems to be clinical culture. The World Health Organization (WHO) stepladder was introduced in 1986 as a global tool to improve patient outcomes by facilitating a common approach to the practice of pain management. The 3 steps provide guidance to clinicians in identifying the right pain medication based on its intensity. These guidelines were developed primarily for patients with cancer pain. More than 30 years later, pain continues to be sub-optimally treated. This is true not only for patients with a diagnosis of cancer; more studies are providing evidence of pain being under-recognized and inadequately treated in patients with other diagnoses. In addition, the WHO stepladder intended to address pain from a physical perspective – in applying the principles of palliative care; we know that pain is multidimensional and requires a more holistic approach to incorporate aspects such as psychological and spiritual realms to adequately manage it. Even when limiting the focus to managing the physical aspect of pain, there is great variation in treatment practices. Variations exist between individuals within a team, the measurement of symptoms, the choice of opioids to manage pain, the frequency and manner of dosage escalation, and the personal choices and comfort in the use of opioid conversions.
Palliative Medicine | Online – 28 February 2018 – Enabling successful discharge of palliative care (PC) patients to home and prevention of readmissions is a key issue for health services. To date, the focus of interventions to achieve this outcome has been on patients. Yet we know that carers are crucial in enabling PC patients to remain at home. This study shifts the focus of current practice of discharge planning to include whether and in what way the support needs of carers might be assessed and addressed during the transition to home care. In so doing, it offers a new direction for intervention development for hospital discharge with the potential to improve support for carers over the transition to home and prevent breakdown of care at home, which is often a cause of readmission of patients to hospital.
Palliative Medicine | Online – 19 February 2018 – Palliative care (PC) patients are often described as complex, but evidence on complexity is limited. We need to understand complexity, including at individual patient-level, to define specialist PC, characterise PC populations and meaningfully compare interventions/outcomes. Semi-structured interviews [were conducted] across six U.K. centres with patients, family, professionals, managers and senior leads, sampled by experience, background, location and setting (hospital, hospice and community). Participants provided an understanding of complexity, which extended far beyond the commonly used physical, psychological, social and spiritual domains. Complexity included how patients interact with family/professionals, how services respond to needs and societal perspectives on care. “Pre-existing,” “cumulative” and “invisible” complexity are further important dimensions to delivering effective palliative and end-of-life care. The dynamic nature of illness and needs over time was also profoundly influential. Stakeholders found it acceptable to capture complexity at the patient-level, with perceived benefits for improving PC resource allocation.