Source: Clamoring for Care: Non Covid-19 Patients Bear Brunt of Suffering and Inequities
The gaping inequities between the “haves” and “have nots” of services to relieve pain and suffering for patients in the U.S. and the world have enlarged with Covid-19. Every year, one in 133 people globally need palliative care and nearly 6 billion people lack access to essential medicines to relieve suffering.
Prior to Covid-19, the situation was dire, but the pandemic has made it worse.
On World Hospice and Palliative Care Day this Saturday, October 10 – doctors, nurses, social workers, chaplains, patients and families globally are coming together virtually to highlight the importance of ensuring palliative care is included in national and local health systems and policy responses to Covid-19.
Patients in low and middle-income countries (LMICs) bear the biggest burden of inequities for palliative care and Covid-19 has placed phenomenal pressure and insurmountable barriers on healthcare systems that were already on the brink.
“We cannot forget patients with chronic needs in the midst of a pandemic. If we do, we’ve lost the heart of what we do, and we’ve lost our humanity. Patients with cancer or other life-threatening illnesses are not a statistic or ‘something’ behind a ventilator. Now more than ever, palliative care as an approach is critical because it cares for the whole person – body, mind and spirit – not just patients for families too,” said Cynthia Daniels, RN and Palliative Care nurse in Houston, Texas.
As sparse medical resources are being diverted to care for those with the virus, diseases such as cancer. TB, and AIDS/HIV continue to ravage the lives of vulnerable adults and children who are increasingly unable to access palliative care services and essential medicines.
For example, in Colombia, patients living with metastatic cancer in rural parts of the country need to travel four hours to fill a prescription for pain medicine that was locally available prior to March. “It is like chronic, cancer, and palliative care patients have become invisible since Covid-19,” said Dr. Marta Leon, an anesthesiologist and palliative care physician in Bogota, Colombia.
In Sudan, Dr. Nahla Jafer reports a similar plight when all hospitals, clinics and roads were closed and there was no access to medications for any illness early in the pandemic.
“The level of suffering was staggering,” Gafer said, “We had to come together and find creative ways to help all patients who need essential medicines and palliative care – before, during and after the pandemic.”
Palliative care inequities in the U.S.
The challenge is not exclusive to LMICs. Throughout the U.S., healthcare workers report that patients have become further stigmatized by COVID-19. And those with pre-existing illnesses such as cancer are not being seen and are seemingly silenced.
“A huge part of our work is continually reminding patients, families and ourselves that each person deserves the dignity of palliative care. Their lives have value, and the virus or the disease does not define who they are. Patients and families feel abandoned, isolated, and ostracized. COVID-19 has made it 1,000 times worse,” said Daniels.
Imperative for effective palliative care locally and globally is empowering, emboldening, educating and collaborating across institutions, disciplines, countries, and cultures.
The Walther Center in Global Palliative Care & Supportive Oncology at Indiana University’s School of Medicine and IU Simon Comprehensive Cancer Center is working to address the multiple factors that influence palliative care locally and around the world.
“World Hospice and Palliative Care day is a once-a-year event but people suffer everyday, around the globe, in our own neighborhoods. This event reminds us to honor patients and caregivers, come together and work collaboratively to see their struggle, give voice to their plight and make real change to ensure palliative care across all diseases, ages, cultures, and the world,” said Dr. Jim Cleary, MD, Palliative Care Specialist and Director of the Walther Center.
To learn more about the Walther Center, visit: https://walthercenter.iu.edu
To schedule interviews, contact: Dr. Barbara Hastie at bhastie@iu.edu or (317) 278-4006.
For more information on World Hospice & Palliative Care Day, visit: https://www.thewhpca.org/world-hospice-and-palliative-care-day/about