By Joan Marston (#4), Founder and Co-Chair, PalCHASE (Palliative Care in Humanitarian Aid Situations and Emergencies network) and Katherine Pettus (#3), Advocacy Officer, IAHPC
People sometimes wonder why they should join and support our global palliative care organizations. After all, we don’t deliver services directly: most of our work is behind the lines, promoting palliative care policies, budgets, and education through advocacy and networking. It’s uphill and largely invisible, not conducive to immediate gratification! But this story illustrates how that backstage work — building long-term relationships on a firm foundation — produced a rapid response and directly served one tiny patient, (#1) pictured below, in dire need.
In 1929 Hungarian writer Frigyes Karinthy proposed the concept of “six degrees of separation,” the hypothesis that anyone on Earth can be connected to any other person on the planet through a chain of acquaintances with no more than five intermediaries. Karinthy argued that, despite great physical distances between the globe's individuals, the growing density of human networks makes the actual social distance far smaller. In the story related below, two global palliative care networks created a temporary super-network that wiped out vast geographical and social distances to help a suffering child in the middle of a pandemic. See if you agree! Hint: Each intermediary in the chain has been assigned a number (#).
In palliative care, the patient and family are always #1! (This is why palliative care practitioners find the term “social distancing,” the lingua franca of the current pandemic, so challenging when they are called in for consults. Because palliative care presupposes a certain intimacy, practitioners prefer to call it physical distancing.) In fact this story shows how “social distance” disappeared as soon as Lynn Graham (#2), a concerned individual in the Philippines, sent a message to the IAHPC website (which is based in the U.S., but managed in Argentina) about a little boy and his grandmother (#1) in Cagayan de Oro who urgently needed help — I (KP #3), in Spain — reacted immediately by contacting Joan Marston, #4, Global Ambassador of the International Children’s Palliative Care Network, in South Africa, to see if she knew any providers in that province.
The message I relayed to Joan from Ms. Graham (#2) was blunt: “He is seven years old yet looks three... He can barely open his mouth to process food, resulting in his undernourishment and worsening health condition. The family has no money to give him the medical attention and other basic necessities he needs.” Within the hour, Joan had contacted #5, Carmen Auste, vice-president of Cancer Coalition Philippines in Manila, who identified free medical and social work resources available for both the child (James) and grandmother, and contacted Dr. Mae Dolendo (#6) in Davao, who heads the Pediatric Cancer Unit of the Southern Philippines Medical Centre. Dr. Mae asked the Cagayan de Oro team to visit #1.
They located the grandmother caring for James — who was severely undernourished and hydrocephalic — at her home across from Mother of Perpetual Help Chapel, and the nurse offered to refer the child to hospital. But grandma refused, because she was afraid of exposing him to COVID-19. She said that the local hospital had offered to operate before, but given the 50:50 odds of success, she preferred to care for him at home, “so he could live longer and better.” Her problem was that they had no money and, because of the pandemic, could not buy food or fulfill basic needs.
Dr. Mae (#6) reported to Joan (#4) that the team had referred the family (#1) to social services, which would monitor their progress. But given COVID-19 constraints, she was realistic. “We’ll do what we can, but we won’t make promises we can’t keep… We’ll try our best.”
Two global palliative care networks overcame six social and geographical separations, completing the connections within two-and-a-half days. The synapses reaching from the Philippines (where I was born, by the way) to Spain — through a U.S. website designed in Argentina — to South Africa, and back to the Philippines, all lit up in response to one desperate grandmother’s urgent plea for help for her little grandson.
Absurd, perhaps, by cost-benefit standards, but priceless by the ethical standards entrenched in palliative care, which keep our organizations going from day to day. Those are also human rights standards, bolstered by the conviction that every life is precious for its own sake, no matter how short, how long, or how marginalized by mainstream ideologies that prioritize profits over people. Our networks, as Karinthy hypothesized, overcame all the apparent “degrees of separation” to do what they were designed to do — relieve serious health-related suffering.
The World Food Program estimates that about 265 million people globally are expected to face acute food insecurity this year because of the pandemic. This is more than double the estimated 130 million who suffered food shortages last year. To alleviate that pandemic of hunger, which is actually a pandemic of indifference, as Pope Francis has said, we will have to overcome other degrees of separation. As a holistic discipline, palliative care attempts to address socioeconomic suffering, which palliative care workers are doing all over the world. For one example, see IAHPC Board Member Harmala Gupta’s feature story about the work of CanSupport published in April.
Do you have a story to share about how palliative care has overcome degrees of separation? Telemedicine seems to be doing that these days! Please send them to newsletter editor Alison Ramsey.
My advocacy work this month included preparing the July 2 webinar on Advocacy for Integration of Palliative Care in the COVID-19 National Response and its accompanying briefing note, and working with Dr. Abidan Chansa, one of our six country Advocacy Focal Points, on his statement to the Commission of Narcotic Drugs for the release of its 2020 World Drug Report. The Vienna NGO Committee on Drugs (IAHPC is a member) selected Dr. Chansa as the civil society speaker at the intergovernmental meeting.
Only Honduras, the International Narcotics Control Board (INCB), and the IAHPC mentioned the importance of ensuring continued access to controlled medicines for the relief of pain during the pandemic. The INCB statement was very strong: “It remains essential for Governments to ensure continued access to controlled medicines for all COVID-19-related medical needs and also for other ongoing critical medical needs such as those related to pain relief, palliative care for oncological treatments, for older adults and medicines for neurological and mental health disorders.”
Stay tuned for next month’s report on the final webinars and briefing notes of the Special Series on COVID-19 and Palliative Care. These include Advocacy on July 9, and Palliative Care for Vulnerable Populations in COVID-19 (such as incarcerated persons, homeless persons, and persons in the LGBTQ community) on July 16. The final webinar, on July 23, will address fundraising and ways forward. See the IAHPC News section for synopses of the most recent webinars, and links to their detailed briefing notes.
I am delighted to announce the publication of my new book Global Palliative Care: Reports from the Peripheries, 2015-2020. The 126-page book is a collection of blogs written since 2014 to record my home visits with palliative care teams all over the world. Many of our readers will find themselves in it!! It also contains short essays on the evolutionary potential of palliative care, reports and discussions of advocacy, and theological reflections, for those who are so inclined. Available from Amazon (ISBN: 979-8648101401) in softcover and as an e-book (Kindle).
All proceeds from the book will go to Hospice Africa Uganda to support bursaries and scholarships for nurses.