2017; Volume 18, No 10, October
Media Watch: an annotated list of recent articles about palliative care in the news media and the literature
Advanced care planning: Pearls, perils, pitfalls, and promises
JOURNAL OF ONCOLOGY PRACTICE | Online – 28 August 2017 – With the passing of the Patient Self-Determination Act of 1990, the U.S. government put into place a mechanism to assess routinely whether patients have a living will or advance directive. Despite the 27 years that have passed since the Act’s inception, there remain many challenges in how providers and patients discuss and implement end-of-life plans. Critics have consistently raised concerns that advance directives are “fundamentally flawed (as they) presuppose more control over future care than is realistic.” Efforts at improving advance care planning (ACP) processes ... have sprung forth from concerns ... that “advance care planning ought to be the preparation of patients and surrogates to participate with clinicians in making the best possible in-the-moment medical decisions,” with less focus on the presence or absence of the document itself. Part of the challenge with approaching ACP and completion of advance directives is that the creation of such documents is a static process that attempts to represent a dynamic, living human being. Although the values of that human being may remain consistent over a lifetime, the health and medical condition of that person often is not stable. Recent consensus panels have attempted to define more clearly what ACP actually is to better implement and measure its impact on outcomes; in addition, more succinct tools to validate ACP engagement behaviors have been recently tested.
Locating advance care planning facilitators in general practice increases consumer participation
AUSTRALIAN FAMILY PHYSICIAN (Urology), 2017; 46(9): 691-695. This study supports co-locating facilitators in general practice as an effective method for increasing advance care planning (ACP) participation. The authors agree with recommendations to incorporate ACP into routine healthcare practices, preferably when the person is medically stable and has time to reflect on their values and preferences. Initiating and integrating ACP as part of routine assessments in general practice (e.g. health assessments for people aged 75 years and older introduced by the federal government) appears to be a sensible strategy for encouraging ACP conversations in general practice and subsequent referrals to ACP programs. They estimate that less than 25% of consumers aged over 65 years in the Barwon region have participated in ACP despite more than 10 years of ACP endorsement and facilitation. Continued promotion and resourcing of ACP are required to “ensure people’s preferences are discussed, documented, actioned and reviewed by implementing advance care planning.”
Which online format is most effective for assisting Baby Boomers to complete advance directives? A randomised controlled trial of email prompting versus online education module
BMC PALLIATIVE CARE | Online – 29 August 2017 – This randomized controlled trial demonstrated that neither email prompting nor provision of additional educational material online were sufficient to significantly impact advance directives (AD) completion rates in this generational group. Nevertheless, this study is one of few that has explored online formats for facilitating completion of ADs in a specific population demographic without reference to disease or illness status. In this study, the authors have shown that although the online environment, in and of itself, may not yield an increase in completion of ADs at the point of contact, nevertheless, it provides the opportunity for a generation entering older age to contemplate the need and creation of these documents through discussion with family and friends. As more of these documents enter the healthcare sector, other aspects of AD use which may assist in increasing completion rates, such as examples of how and when to complete them, and increased conversations and discussions with those likely to be involved would benefit those wishing to complete these documents at a preferred time.
What are families most grateful for after receiving palliative care? Content analysis of written documents received: a chance to improve the quality of care
BMC PALLIATIVE CARE | Online – 6 September 2017 – Knowing family carers’ perception and understanding [of] their experiences is a chance to enhance how to be helpful to patients and family members, and allows palliative care professionals to identify positive aspects of their care in order to improve the assistance provided to patients and family carers. Despite the sadness of their loss, comments from family carers provide valuable input about their points of view of the scope of care. Family carers highlight the importance of key aspects that require a close relationship between health professionals and themselves, suggesting that this component or aspect could be used as a quality indicator of care. Three different content categories emerged from the authors’ analysis: 1) Recognition of the care received and the value of particular aspects of care within recognised difficult situations included aspects such as kindness, listening, attention to the family, empathy, closeness, affection and the therapeutic relationships established; 2) Family recognition of the achievements of the PC team indicated as relief from suffering for the patient and family, opportunity of dying at home, help in facing difficult situations, improvement in quality of life and wellbeing, and feeling of serenity during bereavement; and, 3) Messages of support related to the need of resources provided. The relational component emerges as an underlying key aspect of family carers’ experience with PC home service.
Can digital stories go where palliative care research has never gone before? A descriptive qualitative study exploring the application of an emerging public health research method in an indigenous palliative care context
BMC PALLIATIVE CARE – 4 September 2017 – The many disparities amongst countries worldwide means people face different palliative care and end-of-life scenarios. As a result, a diversity of responses are called for, which means new research methods are required to explore ways in which care might be most effectively delivered. Digital storytelling is one such method worthy of consideration.
Telemonitoring via self-report and video review in community palliative care: A case report
HEALTHCARE | Online – 31 August 2017 – Continuous monitoring and management of a person’s symptoms and performance status are critical for the delivery of effective palliative care (PC). This monitoring occurs routinely in inpatient settings; however, such close evaluation in the community has remained elusive. Patient self-reporting using telehealth offers opportunities to identify symptom escalation and functional decline in real time, and facilitate timely proactive management. The authors report the case of a 57-year-old man with advanced non-small cell lung cancer who participated in a telehealth trial run by a community PC service. This gentleman was able to complete self-reporting of function and symptoms via iPad although at times he was reticent to do so. Self-reporting was perceived as a means to communicate his clinical needs without being a bother to the community PC team. He also participated in a videoconference with clinical staff from the community PC service and his general practitioner (GP). Videoconferencing with the nurse and GP was highly valued as an effective way to communicate and also because it eliminated the need for travel. This case report provides important information about the feasibility and acceptability of PC telehealth as a way to better manage clinical care in a community setting.
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 will publish an abstract or summary of an article or report of special interest noted in recent issues of Media Watch (see below).
View the current and back issues of the weekly report.