Facing the COVID-19 pandemic has made it quite apparent how important global health efforts are to prevent widespread disease and assist in treatment and eradication of diseases through non-medical and medical methods. However, global health also encompasses the care and wellbeing of those dealing with chronic disease and having to make difficult decisions about the future of their care and their lives.
The Yale Institute for Global Health web series Y Global Health profiles Dena Schulman-Green, associate professor of nursing at Yale School of Nursing, a palliative care researcher and teacher of self- and family management of chronic illness.
Dena Schulman-Green always felt that making the world a better place was part of her responsibility. It was this belief and seeing palliative care as a means of supporting patients and families facing life limiting illness that led her to global health research. “Global health estimates and monitors the casualties of disease, but we don’t always focus on the experience of illness or the end of life. We can and should change the pattern of disparities related to end-of-life care,” she says.
Palliative care is most associated with the final phase of life, but Schulman-Green says that’s a misconception. “We want to help people live better with care starting from the diagnosis of a serious illness that is based on what is important to the patient.” She goes on to explain that when care is crafted around patient and family goals, there can be more tailored emotional support, symptom control, treatment choices and overall better quality of life. In the earlier stages of a terminal illness, palliative care doesn’t provide a cure but can potentially provide a longer and better quality of life.
Schulman-Green’s work has taken her to Israel where she found that due to limited access to palliative care, citizens needed care and support during serious illness and at the end of life. By contacting colleagues at the Israel Ministry of Health and “cold emailing” people saying she would like to come with a group of nursing students from Yale, she was able to schedule meetings with health care professionals at all levels of their health care system. “Our colleagues in Israel were so welcoming and honest. Through our conversations we found that there is limited research and clinical time to focus on palliative care, so health care professionals often do this work on their own time.”
Spending months across multiple visits, Schulman-Green and her colleagues conducted two research projects: a national survey of nurses providing end-of-life care, and a study looking at implementation of the palliative care advanced practice nurse role in Israel. Exploring care across the country, the team joined in home hospice visits among Bedouin families living in the Negev desert – some with no running water and limited electricity. She describes how they accompanied a nurse who drove for hours to visit just three patients. “We found gravely sick people lying on the floor, out of medicine, and with nearly empty oxygen tanks.” They watched how the nurse taught families how to administer medicine dosages. “It was very powerful, we saw how much trust the patients had in these nurses.”
It is not only an increase in trained palliative care professionals that is needed in Israel, but also a way to integrate palliative care into an overall system through public education and palliative care training for nurses, physicians, and other health care professionals. Information and skill development in chronic illness management for patients and families must be delivered in a way that is culturally appropriate and acceptable. Her team has created intervention materials that have been translated and are being tested for use across Israel. The intervention can be expanded for use in other countries that are developing palliative care infrastructure. Because changing policy is not easy and there is limited funding for palliative care research, Schulman-Green says the work may proceed at a slow but hopefully steady pace. Her hope is that one day there will be better support for psychosocial family-oriented projects not just in Israel but all over the world. “We need to continue the movement for patient and family-centered management of serious illness.”