WHPCA’s program to respectfully involve people with palliative care needs in all aspects of advocacy, policy, and communications.
In 2017 WHPCA (an alliance of over 350 palliative care organizations in over 100 countries) began an initiative to engage people with palliative care needs (PWPCNs) in all aspects of its organization. For decades palliative care advocates shied away from outreaching and engaging their patients due to outmoded thinking that to do so would burden them when they were seriously ill. Some patients are too ill to actively participate in raising their voice for global advocacy but many more view it as an opportunity to give back and share their experiences so others might benefit. The most effective advocates are those with lived experience. Too often we participate in policy-making forums where “experts” advocate for their cause and often appear self-interested. This approach will not drive change towards integrated palliative care.
I realized the power of sharing lived experience in January of 2018 when I shared Lucy Watts story as a palliative care patient at the WHO’s executive board meeting where Dr Tedros had just been installed as the Director General of the WHO. After my two-minute intervention, I left the floor, but Dr Tedros left his seat to chase after me. He wanted to find out more about Lucy and to meet her. He said that this was the first time in his role as DG that anyone had actually spoken about a real person and he was moved. He gave me his cell phone number and asked if Lucy would call him. Thus, began a friendship between Lucy and Dr Tedros. When we want to get the attention of the most influential person in global health about palliative care, we ask Lucy to write to him.
Involving PWPCNs in your organization requires commitment and openness. We resolved early that this could not just be tokenism. We created two trustee positions on our governing board for PLWPCNs, we got funding to support their work with us as consultants and a commitment to pay for expenses. All our interventions, whenever possible are given by these champions, which in some ways has been made easier by meetings being virtual during this pandemic. This blog has been carefully reviewed by people living with palliative care needs (PLWPCN) before submission. What is necessary is to make a real commitment to partner with PLWPCN’s and to honour their commitment.
For the past three years, we have been gathering and sharing the voices of lived experiences of palliative care from people living in low and middle-income countries in a funded program called ‘Patient Power’. The following is the unedited voice of one woman living with palliative care needs and receiving palliative care in Ethiopia:
Check up at Hospice Ethiopia
“My name is Tsegenet Asefa. I used to be suffering from severe back pain, abnormal vaginal bleeding and discharge associated with the worst bad smell due to cervical cancer. The hospice team helped me in my home and I got relieved, I am able to help myself and maintain my social activities. Cancer is a serious disease that has caused me a bad smell which even your child could not tolerate it. However, the hospice team who provide palliative care gave me the best ever care with love on the basis of my needs. I and my family have got such relief. Even if I have the disease, I have no suffering, I have no pain, I can move and work, I am thankful to God. Therefore, you people suffering from cancer and hypertension, diabetes at home I would advise you to seek palliative care at hospice Ethiopia. Please go to this organization and get a relief like me, we can function and work even if we have incurable disease. I would like to beg all people in the world, please encourage Hospice Ethiopia as they are supporting the worst disease such as cancer patients like me. Because supporting hospice meant, supporting me as they cost for drugs like for amitriptyline, and morphine. Please support us. I would also beg the government to provide land for free for hospice and help cancer, HIV patients in the care center. Cancer patients have not get enough attention like HIV, which I am begging for. Thank you.”
As you can see hers is a powerful and direct message, made all the more powerful because it comes from a lived experience of palliative care rather than an ‘expert’.
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