Baroness Ilora Finlay opened the plenary session on the second day, presenting research which asked the question: ‘What matters most to patients at the end of life?’
“It is about living,” she said, “and we need to focus on living until the day that we die.”
Baroness Ilora noted that she was worried about the phrase: ‘the over-medicalisation of dying’, as, in her experience, she had found that people want to know that they are cared for by the best, by someone who is competent.
She spoke about the need to support and attend to the whole person.
“If your heart isn’t in it,” she advised, “you should leave the specialty. There is no shame in being burnt out, but people need to know that you are committed.”
She reported that people want those who are important to them to be supported and involved in their care and recommended that palliative care workers should sit down with the patient’s family, telling them: “You are the most important people in the care team.”
A major challenge to palliative care
She spoke about the recent press coverage of euthanasia and assisted dying, and reminded those listening that most patients are not asking for euthanasia. She noted: “It is a small but vocal minority who is asking for this.”
Baroness Finlay cautioned against changing the law in response to pro-euthanasia campaigns, saying: “If we change the law, are we removing protection from some people in order to meet the demands of others?” and warned that “normalisation in society becomes expectation.”
She pointed to the relational nature of autonomy and invited the audience to ask themselves: “What effect will our living and dying have on those around us?”
She argued that we should keep euthanasia out of medicine and especially out of palliative care, saying that asking palliative care workers to be involved in euthanasia would be: “asking us to go in the fundamental opposite direction of our whole philosophy.”
Baroness Finlay concluded by asking those listening: “Is the care you are giving your patients good enough for your Mum? We have documents and standards written,” she said, “but this is the only one that matters.”
Global palliative care development
Dr Stephen Connor gave an extremely informative talk entitled: ‘Global palliative care development and the WHA resolution on strengthening palliative care.’
At the start of his presentation, he asked the packed plenary hall how many of those present had heard about the WHA resolution: Strengthening of palliative care as a component of comprehensive care throughout the life course. Less than a dozen hands were raised.
“This is a huge opportunity for (people working in hospice and palliative care, but a time-limited opportunity,” said Dr Connor.
He reminded the audience that it is difficult to advocate for palliative care if you don’t know how many people need care, and introduced the Global Atlas of Palliative Care at the End of Life, a WHO/WHPCA co-publication which contains these important statistics.
Every week, noted Dr Connor, over one million people die worldwide, and over 800 000 of these die in unrelieved pain. Therefore, he said, it is crucial to advocate for increased access to palliative care.
The questions asked by the Global Atlas are as follows:
- What is palliative care?
- Why is palliative care a human rights issue?
- What are the main diseases requiring palliative care?
- What is the need for palliative care?
- What are the barriers to palliative care?
- Where is palliative care currently available?
- What are the models of palliative care worldwide?
- What resources are devoted to palliative care?
- What is the way forward?
Dr Connor noted that the World Health Assembly palliative care resolution calls on all countries to improve access to palliative care as a core component of health systems, but, he cautioned, “It’s all about implementation. Many of these resolutions will get passed and then just sit on a shelf.”
He mentioned the efforts by palliative care advocates and WHO to ensure that this resolution has an effect, including the development of a roadmap to guide the implementation of the resolution.
Follow ehospice to track these implementation efforts.
Advocacy in hospice and palliative care
In the Advocacy session, Prof Rong-Chi Chen, President of the Taiwan Hospice Foundation, gave a talk about hospice and palliative care advocacy in Taiwan over the past 20 years.
He reminded the audience of the importance of advocating to physicians that, when unavoidable, death of a patient is not a medical failure, however, being unable to facilitate a peaceful and dignified demise is.
He also spoke about persuading the general public that filial responsibility, an extremely important aspect of Taiwanese society, should find its expression in being with the parent and encouraging acceptance of disease and peaceful passing, rather than insisting on heroic and futile measures, such as CPR, at the end fo life.
Ednin Hamzah, chairperson of Hospis Malaysia, shared with the audience the development of a universal symbol for palliative care and the work being done to popularise this in Malaysia.
He noted that the symbol, two hearts intertwined and protected within a circle, should symbolise hope, peace and a supportive relationship between patient and healthcare team.
Dr Hamzah also encouraged those listening to visit the Palliative Care Malaysia website to pledge their support for palliative care.
Endings and beginnings
At the gala dinner on the second evening, the organising committee handed over the baton to the delegation from Singapore, who will be hosting the next Asia Pacific Hospice Conference, to be held in 2017.
The Samba Marsala percussion band had all delegates on their feet dancing, perhaps in anticipation of the event to come.