13 October 2018
To mark World Hospice and Palliative Care Day, six women affected by serious illness and palliative care have written open letters to decision makers who can influence access to palliative care. The women from Australia, Bangladesh, India, South Africa and the UK are calling for strong leadership to ensure palliative care for all.
Our Steering Committee member Kate Swaffer wrote to Australian Senator Anne Ruston (Assistant Minister for International Development and the Pacific) giving her personal testimony as the Chair, CEO and co-founder of Dementia Alliance International. You can read Kate’s letter in the Worldwide Hospice Palliative Care Alliance (WHPCA) report, ‘Because I Matter’.
WHPCA, a member of the Global Alzheimer’s & Dementia Action Alliance, says that 61.5 million people worldwide experience serious health-related suffering which could be addressed by palliative care. Unfortunately, less than 10% of those that need palliative care can access it and 42% of the world’s countries have no palliative care services at all.
Hospice and palliative care aims to improve the quality of life of people living with and dying from life-limiting conditions. The hospice and palliative care approach focusses on meeting the needs of the whole person not just treating their condition. It addresses the physical, psychological, spiritual issues and other problems faced by those affected including family members and care supporters. Hospice and palliative care is commonly associated with end of life, however there is growing understanding that it should be available as soon as people are diagnosed with a life-limiting condition.
Kate Swaffer’s letter in full:
As an Australian citizen, I am also writing to you as a
woman living with younger onset dementia and someone who advocates and
works globally and nationally to ensure the 50 million people currently living with dementia globally, and the projected 152 million people with dementia by 2050 receive the care that they need. This includes the more than 425,000 people living with dementia in Australia.
My own diagnosis of dementia came as a shock to my family and friends, especially as I was only 49; a married working mother of two teenage sons. As a result of the poor treatment I received and the stigma I experienced personally, and that is still being reported to me daily, I co-founded a global organization called Dementia Alliance International, which is a registered charity in the USA, but represents people with dementia from 47 countries. This organization was founded in part to ensure that the voices of people living with dementia worldwide are heard at every level. As a retired trained nurse, and someone who talks with people with dementia and their care partners almost every day, I know that an important part of good care is access to palliative care. I’m well aware that one day I may need it too, and I may need my pain managed which is notoriously under-treated with people with dementia. I’m very aware as my condition progresses I will have swallowing difficulties and breathlessness; I already have swallowing difficulties. Therefore, I understand well the importance of developing advance care plans so my family know how I want to live and be cared for if I no longer have the capacity to explain. I was actively involved in developing the recently updated Advance Care Directives in South Australia.
Lack of access to palliative care is a human rights issue worldwide, including for people with dementia. 42% of countries have no hospice and palliative care service and it is estimated that less than 10% of people who need it can access it. All around the world, we see people regularly physically or chemically restrained, harmed or abandoned, and in many countries, they are entirely let down by the health care system which fails them in their care right through to the end of life. Even in countries where palliative care is available, it may not be accessible to people like me with dementia. As you are well aware, Australia has just commenced a Royal Commission into the Aged care system in Australia, due to continuing reports of systemic abuse and very poor care.
Australia is one of the few countries which has a national dementia strategy with strong inclusion of palliative care and as such we could and should be leading the global charge for good access to palliative care for people with dementia worldwide. As countries move towards Universal Health Coverage, I hope that you, as the Assistant Minister for International Development and the Pacific, will join with us to recognize and act upon the unrelieved serious health related suffering experienced by people with dementia worldwide and show leadership in making palliative care available to all. We know that an essential package of palliative care costs just $3 per capita in low and middle income countries and I ask for your personal support to make this happen through the Australian government’s international policies and programmes.