By Katherine I. Pettus, PhD
IAHPC Senior Advocacy and Partnerships Director
“You cannot talk about compassion without talking about communication, […] without talking about pain and symptoms, without talking about the complex conditions in which the patients find themselves. At the family level, lack of resources challenges a compassionate response. The resource issue may be financial; it may have to do with skills at the health care provider level or at the family caregiver level; it may be an issue of space—you need space in which to provide the best care for your loved one.[…] Sadly, we need to clamor for more investment in the health care system to make it work for the patients and palliative care teams, and at the same time.”
—Dr. Emmanuel Luyirika, APCA
Our two roundtables on global palliative care with World Health Organization (WHO) Director General Dr. Tedros Ghebreyesus elicited his promise to send a letter to all 194 heads of state urging them to integrate palliative care into their health systems. WHO recently published a press release summarizing responses from heads of state expressing support for the call to “face this global challenge on palliative care with collective compassion.” Some specified their commitment to strengthen palliative care services, expand access, and develop educational programs.
I had the great privilege of attending an online discussion in March on “Quality Palliative Care: Compassion in Action” with Dr. David Addiss, Director of the Focus Area for Compassion & Ethics (FACE); Dr. Emmanuel Luyirika, Executive Director of the African Palliative Care Association (APCA); Dr. M.R. Rajagopal, Chair of Pallium India; Prof. Liz Grant, Director of the Global Health Academy at the University of Edinburgh; Dr. Shams Syed, Unit Head for Quality of Care, WHO; Dr. Marie-Charlotte Bouësseau, Ethics and Health Team Lead of the Department of Integrated Health Services, WHO; Prof. Philip Larkin, Chair of Palliative Care Nursing, University of Lausanne; and Rob Jones, Parent Advocate and Trustee, International Children's Palliative Care Network (ICPCN). The transcript of all panelists’ remarks is well worth perusing.
In June, the WHO released an updated Clinical Management of COVID-19: Living Guideline that includes a link to a clinical management course covering a holistic pathway of care for a patient, from screening and triage to rehabilitation, testing and treatments, care for older persons, and palliative care. There are excellent references to palliative care and ethics in the guideline. We recommend that palliative care advocates send the guideline to their health ministries with a cover letter introducing their organizations and describing their work.
The WHO has an open-access video course, updated with the latest guidance and evidence, on Clinical Management of Patients with COVID-19: Investigations and care for mild, moderate and severe disease. Developed for health care workers during the COVID-19 pandemic, the course provides crucial knowledge necessary to provide safe, effective quality patient care and addresses all aspects of clinical management. It includes facility preparation and surge planning; health worker infection prevention and control; interfacility transfer; clinical management of mild, moderate, and severely ill patients with COVID-19; special considerations for geriatric, pregnant, and pediatric patients with COVID-19; rehabilitation; and ethics and palliative care. Each module contains five to eight lectures, downloadable presentations, and a quiz to evaluate knowledge acquisition. It is available in six languages.
What Keeps Me Up at Night is an End-of-Life University podcast where Drs. Ira Byock and Karen Wyatt discuss the history of hospice programs in the US and how the original care-oriented insurgent primary care response to medical abandonment of patients at the end of life has mutated into a non-patient-centered industry. Byock flags the fact that for-profit hospices, many of which are traded on Wall Street and purchased by hedge funds, now outnumber nonprofit hospices by nearly 3 to 1. Though both types of hospices are equally funded under Medicare, problems with for-profits include poor staffing (patients have fewer nursing visits and are therefore less likely to see a doctor or social worker) and they select patients less likely to need intensive care over time. Their predatory nature makes it hard for nonprofits to stay in business.
Dr. Wyatt cites her recent interview with Dr. Jessica Zitter, who presented her film Caregiver: A Love Story for IAHPC last year. Zitter is another palliative care professional voicing serious concerns about sending hospice patients home to untrained family members. Both Byock and Wyatt mourned the marketing and “branding” trends that distance palliative care from hospice and from death and dying, maintaining that “we have to be brave enough to talk about death and deal with the things that people in our society are afraid of. Death remains a hard sell. But we want to integrate what we do within the concept of full and healthy living, which, you know, does include living fully as mortal beings.”
The constructive conclusion of this frank and disturbing conversation was that advocacy for upstream palliative care, at the point of diagnosis, should proclaim that “we provide the best care possible through the end of life (instead of at the end of life).” The red flags this conversation raises about commercial development of hospice and palliative care can guide our advocacy with governments that are considering integrating palliative care into their health systems. Rather than leaving service provision to the private sector or underfunded charities, they must strengthen the public, primary care systems. This was the topic of my talk at the Madrid Symposium.
I was invited to represent the IAHPC at a June 22 International Symposium on Global Palliative Care: Challenges and future expectations held in Madrid and hosted by the WHO, the Ramón Areces Foundation, and the Atlantes Research Institute (now a WHO Collaborating Center). In my presentation, “How the International Organizations Support Palliative Care,” I discussed the basics of IAHPC partnerships with UN agencies and how we have worked with them to include palliative care in more progressive public health, human rights, and drug policy narratives. YouTube has the recordings of Panel 1 and Panel 2, which includes my presentation in Spanish. You can read my slide captions in English or view my slides in Spanish.
The event included some excellent presentations. Particularly powerful was Dr. Matías Najún’s presentation on caring for indigent patients and the most marginalized people in Buenos Aires, with Hospice Buen Samaritano.
I would like to remind our readers about the webinar series The Global Palliative Care and Pain Relief Research Hub, a rich resource (co-sponsored by IAHPC) offered free of charge to registrants anywhere in the world. It is an opportunity to learn from global experts about the latest research and policy developments in palliative medicine, palliative care, serious health-related suffering, and health systems.
All you need to do is create a free account on the website and register for the series, which consists of five sessions. The third session, held in June, focused on “Epi-Transitions in the Global Disease Burden and the Need for Palliative Care.” Panelists presented the latest research on demographic shifts in the global burden of disease, palliative care needs of ageing populations, the distinction between “preventable” and “responsive” mortality, and the social justice implications for health systems now that this data is available. I provided comments at the end of the session.
Recordings are available to registered participants if you cannot attend the live sessions, and CME credits can be obtained through a user-friendly process. The fourth session, on August 25, will focus on “Comparative Models in Palliative Care: Perspectives from Africa, Asia, and the Americas.”
This course is intended for multidisciplinary health care providers, palliative care specialists, students and trainees, researchers, and multi-sector stakeholders and advocates invested in advancing palliative care and access to pain relief.
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