Each month, we publish a limited selection of items that may be of interest to our global readership. Contributions are welcomed; we reserve the right to edit content.
The African Palliative Care Association published an Atlas of Palliative Care in Africa on 28 December 2017. The atlas was conceived to counter the ‘lack of comprehensive, up-to-date information on palliative care development’ in Africa.
Available as a free download here, the atlas ‘provides information on 89% (48 of 54) of countries on the continent and provides a cross-country comparison of the progress of palliative care in Africa.’
‘We wanted to improve on the methodology used in the EAPC and ALCP Atlases by initially studying and developing indicators specific to palliative care development in Africa,’ the APCA explains. ‘This consisted of a series of interviews with experts from seven different African countries followed by indicator extractions from those interviews and rating of those indicators by 16 African experts in palliative care. The indicators then went through a rigorous two round Delphi consensus process with 14 international committee members who are experts in palliative care indicators. Finally, the indicators were ranked internally by the project team to arrive at the final set of 19 indicators used to build the current report.
‘[I]nformation is scarce in many countries in Africa, and since methodology must be uniform across all countries included in the study, we believe obtaining information through experts to be the best way to obtain such data within the current constraints. Where available, we have cross-compared data provided by experts with the peer-reviewed literature through a scoping review of palliative care development in Africa from 2005-2016.’
A secondary analysis of the findings is currently being done.
SPICT (Supportive and Palliative Care Indicators Tool) is a free tool developed to ‘help health and care professionals identify people at risk of deteriorating and dying with one or more advanced, progressive conditions or a new life-limiting illness.’
Developed in Scotland as a collaborative project led by The University of Edinburgh, SPICT addresses the problem of late identification of those in need. It aims to ‘help clinicians decide when it is time to look for unmet holistic care needs. We can then start talking with people and their families about what is important to them and the available treatment and care options.’
There are three guides to using SPICT that can be downloaded from the website: SPICT in hospital, in the community, and for all. SPICT editions include: UK (the original), Spain, Brazil, France/Switzerland, Germany/Austria, Japan, The Netherlands, and SPICT-4All, a less-medically focused text for patients, family carers, and staff working in health and care.
Additionally, you can download SPICT for free on iOS for iPhone and iPad, or as an app for Android here.
The team that created SPICT notes that initial work in developing a version for resource-poor settings is currently underway. SPICT-RPS has been tested in Nepal, and clinicians across Africa have been approached.
The Conversation Starter Kit was developed to help people talk about their wishes for end-of-life care. It provokes open and honest conversations with loved ones before a medical crisis happens.
Kits are available in 11 languages: English, French, Spanish, Hindi, Chinese, Russian, Korean, Vietnamese, Portuguese, Hebrew, and Japanese.
This kit and the guides below result from The Conversation Project begun in 2010 by founder Ellen Goodman, a Pulitzer Prize-winning writer in the USA. Goodman’s impetus was having to make ‘cascading decisions for which I was wholly unprepared’ about her ailing mother’s care.
‘I realized only after her death how much easier it would have all been if I heard her voice in my ear as these decisions had to be made. If only we had talked about it,’ she explains. ‘And so I never want to leave the people I love that uneasy and bewildered about my own wishes. It’s time for us to talk.’
Other useful and free companion guides available from the same source:
The Conversation Project has created a free guide on how to select a person who will make medical decisions about your medical care if you are unable to. ‘How to Choose a Proxy & How to Be a Proxy’ offers ‘facts and tips necessary to make sounds decisions about choosing, and being, a health care proxy.
The guide is available in English, Spanish, and Portuguese.
This two-page pdf, titled ‘Talking about Treatment Options and Palliative Care: A Guide for Clinicians,’ encapsulates ways of describing treatments, plus questions health care professionals can ask patients to better understand their priorities.
It uses concrete examples of things doctors usually say (e.g., ‘This treatment has a 5% success rate’) and offers a new approach for each (‘In my experience this treatment works for very few people. For those people, they may gain a few extra months but many people have told me that the side effects are not worth it.’)
The guide uses the same technique for understanding patient questions. For instance, when a patient asks, ‘What are my chances?’, they may really be asking, ‘Am I going to die?’
The guide was part of the US National Hospice and Palliative Care Organization’s annual outreach kit.
The Australian Centre for Palliative Care has designed a group education program to be run in an in-patient setting to prepare family caregivers for the role of supporting a relative who is receiving palliative care.
The Hospital-Based Group Education Program is a 31-page pdf you can download here. It provides step-by-step instructions and guidance that allows health professionals to deliver a program to meet the information and psychological needs of family carers.
‘Four in-patient palliative care units throughout Australia participated in the evaluation of the program,’ the program guide reports. ‘Data was collected from 126 carers, including 42 men and 84 women who attended the program. Analysis of this data found that carers felt better prepared and better informed after they participated in the session. Importantly, on average, carers who participated in the program did not report feeling more distressed after attending.’
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