At the 2022 American Society of Clinical Oncology (ASCO) meeting held in June, there was discussion about incentivizing social and organizational innovations in cancer care rather than the development of new drugs or diagnostics, particularly in low- and middle-income countries. This is a meaningful recognition for an organization dedicated to advancing the science and technology of cancer treatment. If we are going to increase patient satisfaction, reduce inequities in care, and improve the quality of life in the face of cancer we need to focus on the emotional, spiritual, and psychological well-being of patients—and that is true in the United States and other developed countries as well.
One of the ways to do this is by increasing the access to end-of-life doulas. The work of doulas focuses on the non-medical needs of cancer patients helping them to deal with the impact of functional changes with disease progression, finding ways to improve the quality of the time they have, and exploring and preserving what they hope to leave behind in the hearts and minds of their loved ones. In my twenty years of working as a death doula this is what cancer patients and patients with other terminal illnesses tell me really matters to them.
Of course we want to keep creating new drugs, diagnostics, and technologies but we need to rebalance the energy and dollars spent to focus more on the non-medical care approaches to cancer and other terminal illnesses. That might mean subsidizing death doula care, reimbursement through corporate benefits and insurance coverage, especially by Medicare and Medicaid. And then we need to train more doulas and encourage hospices and palliative care providers to incorporate doulas into their care models.
In spite of the great upsurge in interest in death doulas over the last several years the public and many end-of-life care providers are still ignorant about their services and the benefits of incorporating them into care plans. We who do this work need to advocate even more vigorously for our profession and educate the public. This will take time, but we owe it to our future clients and to our careers to make the investment in expanding awareness about doulas and increasing the opportunities for access to doulas, particularly in communities that have been historically underserved.