We took the opportunity to interview Dr Marie Bakitas and Dr Chang Won Won about the future of palliative care while they were part of the SPCC-SHC Research Workshop panel held on 27 August 2022. Dr Chang’s colleague in South Korea, Dr Hyeji Kim, also added her thoughts to this conversation. The one-day event was attended by more than 100 palliative healthcare professionals.
Dr Marie Bakitas (MB) is a Professor at the School of Nursing at the University of Alabama at Birmingham. She is internationally recognised as an oncology and palliative care advanced practice nurse and scientist. Her mission is to reduce suffering and enhance quality of life for persons with advanced illness and family caregivers, especially in under-represented populations and rural areas.
Dr Chang Won Won (CWW) is a Professor at Kyung Hee University and Director of the Senior Health Care Center at Kyung Hee University Hospital. He is the President of the Korean Society of Sarcopenia and was Chair of the Board of Directors of the Korean Geriatric Society from 2020-2021.
Dr Hyeji Kim (HJK) focuses on family medicine with a speciality in hospice and palliative care at Seoul Metropolitan Dongbu Hospital. She leads the Hospice Palliative team, heads the planning team at the hospital, as well as sits on the committee of Korean Society for Hospice and Palliative Care. She is also a lecturer on Death Preparation Education at a welfare foundation.
What is a dignified farewell to you?
MB: A dignified farewell is one in which the patient, family, and friends are prepared and have a major voice in what the last days look like. For some, it may be at home in the presence of family; others might prefer a hospital setting undergoing experimental treatment. Our job as healthcare professionals is to understand every patient’s values and preferences and do everything we can to make their care wishes happen.
CWW & HJK: We believe that patients should navigate their own care with autonomy and make their own decisions about their care and their deaths. In many cases in South Korea, patients’ families are making important care decisions for the patients, and the patients are not involved. It is important for patients to advocate for themselves for their care and the end of their life. A dignified farewell includes keeping the best quality of life for patients and their families until the end.
How does palliative care research make a difference?
MB: Over the last three decades, the goal of palliative care research has been to ensure that these services align with patients’ and families’ needs and preferences. This research is about challenging assumptions and myths about palliative care being only about end-of-life and developing interventions that make this care available to everyone, everywhere and early in the course of the illness when it can have the most impact on improving the quality of life! Palliative care research is about tailoring care to the individual’s cultural beliefs, values, and preferences. When done well, it has changed clinicians.
CWW & HJK: Palliative care research can provide concrete guidelines to relieve suffering as a result of serious illnesses such as pain, delirium, and dyspnea in patients who are receiving both palliative and hospice care.
What are the barriers to patients/families receiving or accepting palliative care?
MB: Probably the most significant barrier is the lack of knowledge or misinformation from uninformed healthcare providers about the timing and role of palliative care. Clinicians who say “the patient isn’t ready for” palliative care are typically placing their own bias into the equation. Most patients and families are unfamiliar with palliative care, but once the service is explained properly, very few decline it. Who doesn’t need or want extra support for themselves or their families when challenged by illness? Who doesn’t want to have the quality of their life improved? Unfortunately, many care providers mistake palliative care for a service that only helps patients who are actively dying, and this incorrect notion creates the biggest barrier to patients receiving this care.
CWW & HJK: In our experience, two barriers exist for patients and their families who are receiving hospice care. First, most patients and their families are having a difficult time coping with their illness and dying. Another reason is the bias surrounding hospice. For example, patients and their families strongly believe that they are abandoned by the primary healthcare team, so they have no choice but to choose hospice care. Another big misunderstanding of hospice is that it shortens the patient’s lifespan. The goal of hospice is for patients to live as comfortably as possible in the last few months or weeks of their life. This is something important for patients to understand.