MY life was gone, but they brought me hope, says Anne Nakate, who has a lemon-sized cancer tumour behind her ear. Outside her home in Gayaza, she greets her visiting palliative care team from Hospice Africa Uganda with delight: â€œIâ€™m so glad to see yo
MY life was gone, but they brought me hope, says Anne Nakate, who has a lemon-sized cancer tumour behind her ear. Outside her home in Gayaza, she greets her visiting palliative care team from Hospice Africa Uganda with delight: â€œIâ€™m so glad to see you. This morphine is what I need, it keeps me going, Iâ€™m so grateful.â€
â€œIâ€™ve been taking morphine since 2007,â€ she explains. â€œThe nurses work with me to manage my pain. I also share any worries I feel with them, so we can find a way forward together. The team makes such a difference. Now I can continue with my daily activities, move around, eat. My life is back.â€
That is what palliative care does. It restores quality of life to people with illnesses from which they will not recover, such as cancer or AIDS-related diseases. But it does not just tackle physical pain and symptoms.
Palliative care offers psychological support of all kinds, from help with practical problems (helping a sick parent arrange childcare), to spiritual issues (reconciling patients to the approach of death) and emotional support (helping families cope with bereavement).
It restores dignity to people who are terminally ill, often enabling patients and families to function normally for months or even years longer than would otherwise be possible, preventing much unnecessary suffering in patients and their carers. In short, it is the kind of care we would all want for ourselves and our families.
Tragically, millions of people in Africa who need palliative care do not get it. In 2007 alone, 22.5 million people in sub-Saharan Africa lived with AIDS and there were 7.6 million new cancer cases and 6 million deaths from cancer.
Few of these patients will have died a pain-free, dignified death. But there are two pieces of good news. The first is that Uganda is among the countries spearheading palliative care development in sub-Saharan Africa. That is why the African Palliative Care Association (APCA) is based in Kampala.
APCA works to promote palliative care across the continent by supporting local and national palliative care associations and programmes, promoting palliative care education for doctors, nurses, social workers and other therapists, and advocating with governments to include palliative care in their national health plans.
The organisation has its work cut out. Palliative care remains neglected despite the challenges of AIDS and cancer, and does not feature in the national health strategies of many African countries.
Instead, it is limited to a few islands of good practice in a sea of neglect. Barriers include lack of trained palliative care professionals; extremely basic health and social care infrastructures, and drug laws that restrict the availability of essential pain-beating medication, such as morphine.
It all sounds rather grim â€” but the second piece of good news is that everyone of us in Uganda can play our part in strengthening palliative care provision in and beyond the country. The question is how.
We can support this yearâ€™s World Hospice and Palliative Care Day, on October 10, when people take part in events and activities to raise awareness and funds for the development of palliative care. This yearâ€™s theme is â€œDiscover your voiceâ€, based on the idea that anyone can speak out and support palliative care. Anyone can make a difference. We can also support any of the pioneering organisations which APCA works alongside, such as Hospice Africa Uganda, the Mildmay International Centre and the Palliative Care Association of Uganda (PCAU). For my part, I will be at the PCAU fundraising football tournament on October 10, with my son and his friends.
The challenges to palliative care across Africa are significant, but not insurmountable. Those who desperately need palliative care may one day be our own family members, or even ourselves. So I believe we should all discover our voice and speak out to ensure that the unnecessary suffering of patients with life-limiting illnesses can be reduced and their quality of life improved.
The founder of modern palliative care, Dame Cicely Saunders, said: â€œYou matter because you are you. You matter up to the last moment of your life. And we will do all that we can to help you to live until you die.â€ As Anne Nakate proves, palliative care really does just that.
The writer is M&E research manager at the African Palliative Care Association
Include palliative care in our national healthcare strategy