Joan Marston, Founder of PalCHASE (Palliative Care in Humanitarian Aid Situations and Emergencies) writes about the challenges of providing palliative care to people affected by infectious disease outbreaks.
Recent infectious disease outbreaks and the probability of new outbreaks have challenged us as a palliative care community to identify and play an active role in these situations.
We need to learn from lessons of the past, identify what we can do in the present and plan for the future.
One of the greatest challenges for palliative care is providing services in situations where they are most needed, but also most difficult and often dangerous to provide. Infectious disease outbreaks – such as the ongoing challenge of Ebola in the DRC, measles in Samoa and the DRC, the recent outbreak of pneumonia caused by a new corona virus in Wuhan, China and the predicted rise again of polio warrant our attention.
These outbreaks usually occur in low-income countries with limited resources, in situations of continuing unrest, or in humanitarian situations where health systems are fragile and care is difficult and often dangerous to provide.
Vaccination programmes break down as vaccines are difficult to obtain. Health-related suffering, end of life care, bereavement needs and mortality are high – all these within our field of “expertise”.
Malnutrition increases risk, especially to the most vulnerable – children, older persons, pregnant women, those with disabilities and individuals with pre-existing conditions that weaken their immune systems. Infectious conditions in pregnancy may expose the unborn child to a life-limiting or life-threatening condition, eg Zika, HIV, and Rubella.
The Political Declaration that came from the High Level Meeting of the United Nations on Universal Health Coverage “Universal health coverage: moving together to build a healthier world” on 23 September 2019 included this statement:
“Recognize that universal health coverage implies that all people have access, without discrimination, to nationally determined sets of the needed promotive, preventative, curative, rehabilitative and palliative essential health services, and essential, safe, affordable, effective and quality medicines and vaccines…” (my italics).
If palliative care is the response to serious health–related suffering, a human right, and should be available to all, then it must be an integral part of a comprehensive package of health care and humanitarian provision in these situations and must also promote prevention, cure and control measures.
Sadly, it is seldom provided due to difficulties in reaching infected populations, competing health and supportive care priorities, lack of palliative care resources, including personnel and medicines, and very real associated dangers.
Despite these challenges there are examples of successful provision, including that given by The Shepherd Hospice in Sierra Leone for people with Ebola; neonatal palliative care in Afghanistan, and an initiative to the Rohingyan population in Cox’s Bazaar in Bangladesh.
Humanitarian health response organisations are working on integrating palliative care into their programmes and there is an increasing awareness of the need for palliative care practitioners to become more actively involved in training, advice, advocacy and the provision of palliative care.
The question is what can we do now in infectious disease outbreaks – and how do we plan for the future?
We can provide pain and symptom management, holistic care, training of families and good end of life and bereavement support. We can train and mentor professionals and community members. Many are willing to help and the possibility of palliative care response teams has been explored. Major challenges include serious barriers to reaching many in need, and the funding to achieve this.
Learning from the past, the experience in sub-Saharan Africa and Asia when HIV and AIDS was rife and hospices changed the way they worked, namely through training community workers and the scale-up of home community-based care, also to those with drug-resistant TB and malaria.
There are innovations coming from low-income countries that teach us how to reach into areas that are difficult to access with minimal resources. Political will and the allocation of resources by governments, especially at the primary health care level is essential; as is collaboration with other entities working in the region.
In the present, we can do more to support the many palliative care initiatives that are already collaborating; introduce research into what makes them effective; and adapt these to infectious disease situations. We can also make use of the excellent publications available. Importantly we need to come together to plan our response for the future as we know these outbreaks of infectious diseases will not abate.
If you are interested in joining the PalCHASE initiative please email Joan Marston at firstname.lastname@example.org.