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: Five publications have recently published special editions, sections, or supplements on end-of-life care:
Annals of Longterm Care, 2018;26(1):27-32. A transition team was created to track each patient’s discharge disposition over the course of 12 months...and any hospital readmission within 30 days of discharge. Frequent readmissions were identified for all patients, but special attention was paid to those discharged to a skilled nursing facility. Partnering with a health system’s community palliative care PC team allowed the authors to extend PC into partner facilities via a palliative nurse trained in communication skills to facilitate the transition of patients to hospice or community-based PC services as appropriate. Over the course of this year-long project, readmission rates for all PC patients decreased from 22% to 16%. In particular, readmission rates of patients being discharged to partner facilities decreased from 26% to 10%. This pilot project demonstrates an opportunity for collaboration between inpatient PC teams and community partners in order to improve care transitions and reduce hospital readmissions in this subset of patients.
BMC Geriatrics | Online – 14 February 2018 – The authors created a Theory of Change map that describes how and in what circumstances advance care planning (ACP) should be implemented and organised in nursing homes to achieve its desired long-term outcomes. They explicitly state which intervention components should be part of this ACP intervention. The Theory of Change map provides the first comprehensive rationale of how ACP is expected to work in nursing homes, something that has not been shown by research before, but for which repeated calls have been made. We will use these insights in the further design of the ACP intervention and its evaluation to explore in greater depth how, why and in what circumstances ACP works best in routine nursing home care in Belgium.
Related article in the same issue: ‘Description of an advance care planning intervention in nursing homes: Outcomes of the process evaluation’
BMC Palliative Care | Online – 14 February 2018 – The well-lauded community-based palliative care (PC) programme of Kerala, India, provides medical and social support, through home-based care, for patients with terminal illness and diseases requiring long-term support. There is, however, limited information on patient characteristics, caregivers and programme performance. A study was conducted in the oldest community-based palliative clinic in Kerala. While 91% of the patients registered in the clinic in 1996 had cancer, its relative proportion came down to 32% in 2016 with the inclusion of dementia-related illness (19%) cardiovascular accidents (17%) and severe mental illness (5%). The changing dynamics over a 20-year period of this PC programme...highlights the need for similar programmes to remain flexible and adapt their services in response to a growing global burden of non-communicable diseases. While a high death rate is expected in this population, the high proportion of patients choosing to stay in the programme suggests that home-based care is valued within this particular group. A diverse range of clinical and psycho-social support skills are required to assist families and their caregivers when caring for a cohort such as this one.
BMC Palliative Care | Online – 5 February 2018 – This study shows how persons with palliative care (PC) needs and their families experience transitions in a palliative context. Maintaining normality, experiencing changing roles and anticipating the future are central phenomena for these groups. The derived model of experiencing transitions in palliative situations shows a deviating view on transitions compared to the one promoted in traditional models. The results can help health care professionals understand persons with PC needs and their families. The health care professionals can use this understanding to offer targeted services, enabling the development of tailored education and counselling offers for persons with PC needs and family members/informal caregivers. The conceptual model assists in comprehending the experiences of persons with PC needs and their family members. Based on this model, health care professionals can identify available resources and support the family in their self-management strategies.
BMC Palliative Care | Online – 22 January 2018 – Results [of this study] indicate that the data posted by terminal patients on Twitter can provide insights that may be comparable to, or complement, those garnered using more traditional qualitative research techniques. While the authors’ analysis was at the structured end of the digital ethnographic spectrum, it nevertheless shows the value of such methods for understanding how terminal disease is experienced by and affects individuals, how they cope, how support is sought and obtained and how patients feel about the ability of palliative care (PC) services to meet their needs at different stages. Further research is warranted to extend this analysis across the wider trajectory of life-limiting illness and to a variety of disease types, as well as to explore the use of data mining and pattern recognition techniques to study larger cohorts and different social media platforms. As part of a wider agenda for “palliative social media,” the authors recommend efforts to engage health professionals in exploring how digital end-of-life trajectories may inform the provision of supportive and PC, to improve the quality of life and death for patients like Kate.
Related topic: ‘Do not click “Like” when somebody has died: The role of norms for mourning practices in social media’
Health Economics | Online – 19 January 2018 – Preference elicitation studies reporting societal views on the relative value of end-of-life (EoL) treatments have produced equivocal results. This paper presents an alternative method, combining Q methodology and survey techniques (Q2S) to determine the distribution of three viewpoints on the relative value of EoL treatments identified in a previous, published, phase of this work. These were Viewpoint 1, “A population perspective: value for money, no special cases”; Viewpoint 2, “Life is precious: valuing life-extension and patient choice”; and Viewpoint 3, “Valuing wider benefits and opportunity cost: the quality of life and death.” A Q2S survey of 4,902 respondents across the U.K measured agreement with these viewpoints; 37% most agreed with Viewpoint 1, 49% with Viewpoint 2, and 9% with Viewpoint 3. Regression analysis showed associations of viewpoints with gender, level of education, religion, voting preferences, and satisfaction with the National Health Service. The Q2S approach provides a promising means to investigate how in-depth views and opinions are represented in the wider population. As demonstrated in this study, there is often more than one viewpoint on a topic and methods that seek to estimate that averages may not provide the best guidance for societal decision-making.
Related topic: ‘Expensive care? Resource-based thresholds for potentially inappropriate treatment in intensive care’
Oncology Nurse Advisor | Online – 8 February 2018 – Modern medicine with its emphasis on cure frequently discovers itself struggling with an array of challenges in end-of-life care. Studies on the influence of compassionate silence in end-of-life care have indicated that clinicians' focus solely on “doing” may actually be inappropriate at times and inhibit their ability to effectively address and meet the needs of the person who is terminally ill. A prominent theme was that the “do, fix, and hopefully cure” mandate in modern medicine may not be appropriate at the end of life and, in fact, may need to be balanced with the quality of being present with those who are suffering. Being “present” to patients who are nearing death therefore entails that clinicians possess a certain comfort level in terms of “sitting with the silence” and offering the “gift of presence.” The research of Back and colleagues outlined three types of silences that can manifest between patients and clinicians in the clinical encounter: awkward, invitational, and compassionate. In regard to awkward silences, they write, “silence most often feels like it is dragging on too long when a well-meaning clinician thinks he should be ‘using silence.’ While we recognize that new skills have a learning curve before they can be performed smoothly, we also think that the problem with a directive to stop doing something is unlikely to produce the quality of silence that is actually therapeutic.”
Palliative Medicine | Online – 5 February 2018 – Although examining perspectives of patients on integrated palliative care (PC) organisation is essential, available literature is largely based on administrative data or healthcare professionals’ perspectives. The authors recruited 157 patients from 23 integrated PC initiatives in Belgium, Germany, the U.K., Hungary and The Netherlands. About 33% reported contact with a PC specialist and 48% with a PC nurse. Relationships with PC specialists were rated significantly higher than other physicians. Compared to patients with cancer, patients with chronic obstructive pulmonary disease and chronic heart failure had significantly lower odds of reporting contact with PC specialists and patients with chronic obstructive pulmonary disease had significantly lower odds of reporting contact with PC nurses. Perceptions of main responsible healthcare professionals or caregivers in patient’s care networks varied across countries. Perceived integration was significantly associated with overall satisfaction. Expert PC involvement needs to be explicated especially for non-cancer patients. One healthcare professional should support patients in understanding and navigating their PC network. Patients seem satisfied with care provision as long as continuity of care is provided.
Related article in the same issue: ‘Integrated palliative care is about professional networking rather than standardisation of care: A qualitative study with healthcare professionals in 19 integrated palliative care initiatives in five European countries’
Palliative Medicine, 2018;32(2):312-313. Entry to a care home often occurs when other services are no longer appropriate. The older person is unlikely to benefit from curative treatments, and their needs have exceeded what can be provided within their home. It also signals someone is in the last year(s) of life. There are growing programmes of research work that articulate well the palliative care (PC) needs of residents and tested and developed education and training interventions that are context-specific and dementia-sensitive. Less well articulated is how the different configurations of services that work with and around care homes improve, sustain or hinder end-of-life care (EoLC) provision to care home residents. What kind of infrastructure and “wraparound” support is needed to ensure continuity, consistency and management of the inevitable uncertainties that arise when providing PC to this population? Care homes as standalone organisations often nurture relationships over time with visiting PC generalists and specialists including doctors, nurses, therapists and social workers. The quality of these associations however are highly variable and range from episodic, reactive resident specific encounters to those that have the capacity to discuss and jointly plan EoLC services. Evidence suggests interventions that facilitate integrated working, that breakdown narratives of “them and us” can reduce duplication of effort, improve use of urgent and emergency services and foster reciprocal working.