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Augment is produced quarterly and highlights some of the recent literature and web resources relevant to clinicians with an interest in palliative care in residential and community aged care.
Some of the articles or documents included in this newsletter may require a subscription to read in full. You can register to receive Augment via email or you can view previous editions on the Decision Assist website.
What’s New in the Literature?
What’s New on the Web?
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What’s New in the Literature?
Hackett J, Godfrey M, Bennett MI.
Palliat Med. 2016 Sep;30(8):711-9.
Despite advances in treatment of pain in advanced cancer, it remains a major source of suffering with adverse effects on patients' life quality. There is increasing understanding of its multi-dimensional nature and the variable responsiveness of medication to complex pain. Less clear is how patients and their caregivers respond to and manage pain complexity.
The aim of this study was to explore patients' and carers' experiences of advanced cancer pain and the processes that they engage in to manage pain.
This qualitative study employed face-to-face interviews at two time points as well as audio diaries. Data were analysed using grounded theory strategies.
Purposive sample of 21 advanced cancer patients and 16 carers from oncology outpatients in a tertiary cancer centre and a hospice ensued.
Three distinct patterns of pain were discerned in patients' accounts, distinguishable in terms of complexity, severity, transiency and degree of perceived control over pain. Pain was dynamic reflecting changes in the disease process, access to and effectiveness of pain relief. For patients and carers, neither pain relief nor expertise in pain management is secured once and for all. The main drivers of help-seeking and action by patients to manage pain were the sensory experiences of pain and meaning attached to it, not beliefs about analgesia.
The complex and dynamic nature of pain and how it was understood shaped help-seeking and pain management is discussed.
The authors conclude that variable effectiveness of pain relief for different pain types were challenging for patients and professionals in achieving relief.
Kimbell B, Murray SA, Macpherson S, Boyd K.
BMJ. 2016 Jul 18;354:i3802.
Everyone dies, but uncertainty about how and when that will happen is inevitable. Uncertainty can be seen as an “enemy” to be constrained by medical science. Work continues on tools that try to provide a reliable prognosis for people with advanced health conditions as far as six or 12 months ahead on the grounds that meaningful choices require robust evidence of risk of death. However, such tools are unreliable when applied to individuals. Uncertainty also drives fears about future debility, loss of control, and either inadequate or excessive healthcare.
The authors question the perception that uncertainty is a barrier to appropriate person centred care towards the end of life. Uncertainty may in fact be more friend than foe. An unpredictable but evident risk of deteriorating and dying should be a trigger for planning care with all people who have an advanced illness and in all care settings. It offers a prime opportunity to accept and manage the inherent uncertainties of living and dying well with progressive, advanced conditions.
Agar MR, Quinn SJ, Crawford GB, Ritchie CS, Phillips JL, Collier A, et al.
J Palliat Med. 2016
Delirium has a high mortality rate. Understanding predictors of prognosis in patients with delirium will aid treatment decisions and communication. This study aimed to explore variables associated with death during an established episode of delirium in palliative care when haloperidol treatment had been commenced.
A consecutive cohort of palliative care patients, from 14 centres across four countries, is reported. The outcome of interest was death within 14 days from commencement of haloperidol treatment for delirium. Clinicodemographic variables explored were delirium severity, age, gender, primary life-limiting illness, body mass index (BMI), total daily haloperidol dose at baseline (mg), functional status, and comorbidities.
One hundred and sixteen palliative care patients where vital status was known were included in the analysis; 45% (n = 52) died within 10 days, and 56% (n = 65) died within 14 days. In multivariate analyses no clinical or demographic variables predicted death, apart from lower BMI in non-cancer patients.
This study has shown a very high mortality rate within two weeks of commencing haloperidol for delirium in palliative care, with no clear clinical predictors for those with a higher chance of dying. Having a higher BMI offered some benefit in survival, but only in non-cancer patients. When delirium occurs in advanced illness, discussion should be initiated about the gravity of the clinical situation.
Macfarlane S and O’Connor D.
Aust Prescr. 2016 Aug;39(4):123-125.
Psychotropic drugs are often prescribed to manage psychological and behavioural symptoms in dementia, yet are known to increase the risks of hospitalisation, falls and death. The authors describe the challenges of managing patient symptoms as well as carer and staff pressure for a quick solution with practical advice, including the limits of drug treatment and the need for ongoing behavioural management strategies.
The authors note that: “While a drug might have a PBS indication for treating behavioural disturbances, this does not mean that all symptoms are likely to respond equally well to that drug. There is no drug that will stop people wandering, undressing, urinating inappropriately, shadowing staff or calling out.”
For information about the Commission’s work regarding the role of antipsychotics in the care of dementia and delirium, see the Better way to care resources, and the recently launched Delirium Clinical Care Standard.
We need to talk about caring: dealing with difficult conversations
As people age, talking to family about what might happen in the future is often fraught with difficulty. Asking questions about where to live and how to be cared for forces families to confront complex emotions. Often, discussions on the matter are avoided altogether.
This report summarises new research from Independent Age, looking into how and why families avoid talking about challenges they may face in older age.
We need to talk about caring: dealing with difficult conversations (freely accessible 0.99MB pdf)
Improving the quality of care in the last days of life
This UK document identifies best practice in the way medications should be managed in the last days of life.
It sets out practical, high level, evidence-based recommendations to help guide those responsible for care to review their processes and consider ways to make change where necessary.
Improving the quality of care in the last days of life: A practical guide to getting medications right (freely accessible 1.46MB pdf)
Who knows best? Older people’s contribution to understanding and preventing avoidable hospital admissions
With an ageing population and with pressures mounting on acute care, the emergency hospital admission of older people has become a key policy issue and the subject of significant media debate. Often, the assumption appears to be that potentially large numbers of older people are admitted to hospital without really needing the services provided there, but because there is nowhere else for them to go or because other services are operating ineffectively.
In response, there is a growing body of research around what is often termed as ‘inappropriate’ hospital admissions, with recent studies either drawing on clinical opinion or using more structured clinical review instruments in order to calculate rates of ‘inappropriate’ admission. However, such studies tend to overlook the importance of local context, do not always draw sufficiently on the tacit knowledge of front-line professionals and, above all, fail to include a patient perspective.
The latter is particularly important given that other areas of policy are actively promoting the notion of ‘nothing about me without me’ and given that older people and their families are the only people with a long-term sense of how their health has deteriorated, what happened to necessitate a hospital admission and what options there might have been at various stages for different interventions and outcomes.
Who knows best? Older people’s contribution to understanding and preventing avoidable hospital admissions (freely accessible 2.03MB pdf)
Redesigning the experience of dying
We often talk about giving our loved ones a 'good death'—but the reality is that many people's final hours are spent in the sterile surrounds of a hospital.
Dr BJ Miller believes we can do better.
He's a hospice and palliative medicine physician at the University of California who works with cancer patients and their families.
Last year he gave a TED talk about 'what really matters at the end of life' which has been viewed more than four million times.
Dr Miller joins Fran Kelly on RN Breakfast.
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Decision Assist Linkages Project
Palliative care is core business for aged care providers. This was a real eye opener for me. I made a presentation to the Board and it was a light bulb moment for them.’ (Aged care service representative.)
The Decision Assist – Palliative Care Linkages project aim is to enhance linkages between aged care service providers and specialist palliative care service providers involved in the delivery of palliative and end of life care to older Australians across a range of settings. Twenty demonstration sites implemented at least one of seven strategies designed to improve collaboration between aged and palliative care: role clarification; formalised agreements; communication pathways; multidisciplinary team work; designated “linkage worker”; knowledge exchange and upskilling; and continuous quality improvement.
Many aged care services moved to a clearer understanding that their clients or residents would benefit from input of a palliative care team. Improved collaboration, referral pathways, building the capacity of aged care staff to provide care, prevention of avoidable transfers to acute care, and better clinical care for dying older people were seen during the course of the project. For most, palliative care has been integrated into the routine care provided to clients and residents, and is truly seen as ‘core business’.
A suite of resources will be released shortly, including videos, a linkages toolkit, and a booklet of case studies, all of which provide important suggestions for implementing linkage strategies. Keep an eye on the Decision Assist website for more information.
Specific and Special Needs
Palliative needs can differ significantly across the Australian community. In recognition of this, Decision Assist seek to provide guidance and resources in advance care planning and palliative care delivery for aged care providers. Holistic palliative and end-of-life care embraces the physical, emotional, psychosocial, spiritual and cultural dimensions of human life and respects diversity and individual needs.
Below are links to a number of resources available on the Decision Assist website:
More information: www.decisionassist.org.au
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