So the last few days has been interesting for me. As GoGently Australia launched their latest campaign to advocate for assisted dying legislation, I’ve been removed from the public response in Australia, while attending the ICEL conference in Halifax. It’s been a great chance to hear about recent developments in Canada, and reflect on the data and some of the ‘lived experiences’ of practitioners, family members and patients, which has emerged through recent research.
We at Palliverse support open dialogue between researchers, clinicians, policy-makers and the broader community as to how things are going and what are the priority areas for future work. Please see below a research opportunity which is relevant to researchers and clinicians working in Australian adult palliative care settings. Continue reading
It’s well known that research can be a demanding and sometimes lonely road, particularly for those new to the discipline. Early career researchers often have to build networks, lead projects, write applications to funders and ethics committees, liaise with project stakeholders, analyse data and present findings, all while building networks and managing a precarious career pathway with little security. Support and skill-sharing is critical during this process. The Palliverse researcher hub was formed in 2016, following a discussion between some of our crew at a conference. The idea was a regular, informal get-together for post-grad and early career palliative care researchers, to discuss aspects of our projects, seek advice and share experiences. We meet bi-monthly for around an hour, and keep a relatively open agenda, to aim for the kind of reflective discussion you don’t always get at departmental seminars or CPD sessions. We’ve started small, and now are ready to branch out a little. If you are a palliative care researcher working in Australia or New Zealand, and think you’d like to join our group, please get in touch with us by emailing firstname.lastname@example.org. Happy researching!
Today is World Elder Abuse Awareness Day. The United Nations, in their resolution 66/127, established June 15th as a global day, which aims to raise awareness about elder abuse as a global issue, ‘everybody’s business’ and one that will become of increasing importance as our global population ages.
Elder abuse is defined as ‘a single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust which causes harm or distress to an older person’ (WHO). It can include physical, psychological, emotional, financial or sexual abuse, and neglect.
While palliative and end-of-life care is not solely an issue for older people, it is timely to remember that many people accessing palliative care are also ageing, and often experiencing issues associated with elderhood, including societal attitudes towards older people. Many of these issues can influence people’s access to support, social engagement, health services and the enjoyment of personal freedoms and decision-making rights, making this an area of direct relevance for palliative care.
Many of you who are regular Palliverse readers will be aware of our ongoing promotion regarding the need for the community as a whole to support open discussions about death, dying and end-of-life care. A group of researchers from the University of Alabama have recently published on a novel approach to this issue. In this study, they report on the effects of training lay community members as ‘health navigators’, who work with patients in hospital to help them understand the process of advance care planning, and to facilitate their further discussions with their family and healthcare team.
Registrations for the Palliative Care WA State Conference are now open. The conference will be held on 29-30 November 2016 at Joondalup Resort. Online registration is available here. Look forward to seeing you there!
End-of-life care and decision making is not something many people feel comfortable discussing, and yet is a conversation that all of us would benefit from having.
In order to generate awareness of and discussion around Advance Care Planning, Health Issues Centre is presenting a theatrically inspired event in Melbourne titled Unspoken (What Will Become of Me?).
I have seen few topics that can simultaneously enliven a dinner party conversation and create such moral divides as the debate about euthanasia and physician-assisted suicide. Conversation increases in volume and speed. Wine glasses are clutched tightly to chests. Slippery slopes, autonomy, choice, sanctities and human rights to life and death are bandied across the room. Other party-goers are drawn in, almost against their will.
While this dinner party conversation may eventually give way to renovations or school holiday plans, the public debate continues.
Perhaps it takes hold so readily because we all share such a deep stake in the issue. Whether committed to autonomous, communitarian, religious, ideological or professional positions, we are all part of a broader community, sharing a common experience of human life and death.
Robert Larkins, in his book Funeral Rights explains how “…in a little over 80 years, it has become the norm in Australia for a person to die in an institution and for strangers to collect the body and spirit it away to some mysterious and inaccessible mortuary.” He ascribes this transition to a combination of complex legislation, inadequate community awareness and in some cases, exploitation by those in the ‘death-care’ industry.
Demoralisation has been described as a form of psychological distress that is associated with hopelessness, helplessness, and a loss of meaning and purpose. It has been explored across a number of settings, but is thought to be particularly important in palliative care settings, where it may affect up to 20% of patients who face end-stage disease.
Such a pattern of distress goes to the core of our identity, and presents challenges to well-being and the often-cited idea of ‘living well until we die’. It also has important implications for decision-making and consent in relation to medical treatments.
Practitioners in palliative care understand the far-reaching impact of demoralisation, and Professor David Kissane, along with colleagues at Monash University have been advancing our understanding of this concept Continue reading