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 Marie Bakitas (centre, in cream and brown) with her palliative care research team and community partners
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.
Dr Chang Won Won on his rounds at the Senior Health Care Center of Kyung Hee University Hospital
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.
How can we promote upstream early palliative care involvement in cancer/non-cancer conditions?
MB: This is the million-dollar question! It takes a culture change, led by a champion, to put all the pieces in place to change the healthcare system. Societal demand and valuing quick fixes and magic bullets (pills) with the aim of curing add to the challenge. However, I believe systems change when there are opportunities to experience the value of the services. For example, few people would argue that prenatal care is essential to prepare for the healthiest pregnancy and baby. Another example: years ago, no one realised they needed a smart phone, and now, most people can’t live without it. Transformation is more likely to happen when a critical mass of healthcare systems provide early palliative care. The value becomes evident, and people will demand it or see it as an excellent healthcare system marker.
CWW & HJK: It is essential to educate both patients and healthcare professionals about the fundamental concept of hospice care. Korean cancer patients choose hospice care in the later phases of their illness, which is too late. According to the Korean National Hospice Center (2022), in 2020, a Korean patient used the hospice service for only for 28.3 days on average before they died. In many instances, hospital staff don’t consider hospice care when really, hospice care would be a better option for patients with terminal illness. It means that education is the key not only for the patients but also for the healthcare providers so the eligible population can have a better chance to receive hospice care, and have more time to manage their end-of-life with dignity.
Dr Hyeji Kim (second row, first from right) with the hospice and palliative multidisciplinary team at Seoul Metropolitan Dongbu Hospital
What have you been busy with lately?
MB: In addition to my palliative care research, I am now in charge of the research and scholarship mission of the UAB School of Nursing, and the university’s palliative care research programme. In this vital role, I ensure that early-career researchers, students and trainees have the resources, education and infrastructure to ensure their success in becoming independent investigators. It’s important to ensure that the next generation of scientists are available to continue the work of discovery and dissemination of innovations to improve the care and lives of those we serve.
HJK: I am the leader of the multidisciplinary hospice care team at the Seoul Metropolitan Dongbu Hospital, and with the care of inpatients receiving hospice care. I usually participate in the various hospice events for patients and their families, as well as attend symposiums and workshops to broaden my perspective of hospice care.
What motivates you in your work?
MB: There is a very long answer to this, but I will share the brief one. When I was a ‘younger’ oncology nurse caring for patients undergoing bone marrow transplants, I was distressed by how patients at the end-stage of their illness were often forgotten and didn’t have a good death as they were unaware that the end was coming. I also observed traumatised families watching difficult deaths and being unprepared for them. As these patients neared the end of life, I was haunted by the words:”If only I had known, I would have done things differently. These words motivate me to find ways to guarantee that patients and their families have the preparation they need, so I will never hear those words again.
HJK: Patient satisfaction is a powerful motivator for me. I am fulfilled when a patient’s suffering can be mitigated by the hospice multidisciplinary team’s approach, and they pass away peacefully. Also, the best part of my job is to hear the stories of patients and their families. I feel grateful when bereaved families say their loved one was happy in hospice care.
How has COVID-19 impacted palliative care?
MB: In many ways, the pandemic shone a light on the importance of early palliative care. Many people got seriously ill very quickly and realised how unprepared they were to face serious illness. It also challenged palliative care specialists to rethink how we provide palliative care—that is, the social isolation procedures challenged us to reconsider the notion that the ‘best’ palliative care could only be provided in person. We had to rethink that idea and become much more open to ideas like telehealth.
CWW & HJK: In the South Korean healthcare system, most public and city hospitals provide hospice care to inpatients. Since non-public hospitals have almost no profit from hospice care, the public healthcare system is in charge of hospice care. During the pandemic, public hospitals were dedicated to treating COVID-19 patients and left little capacity or resources to treat patients who require hospice care. This is an ongoing issue that has been happening for the last two years. Another issue caused by the pandemic was that palliative inpatients were dying alone because family-visiting time was restricted as part of infection control.
What are your thoughts on palliative care for older adults and patients who are frail?
CWW & HJK: There are only five eligible illnesses for hospice care covered by national health insurance in South Korea. These illnesses are cancer, COPD (Chronic Obstructive Pulmonary Disease), liver cirrhosis, chronic respiratory failure, and AIDS. Hospice eligibility needs to be expanded at the systemic level for other serious illnesses. There are many other illnesses where patients’ prognosis is only months or weeks, and these patients deserve palliative care as well. These patients receive painful medical treatment meant to just extend their lives, when really, they should be facing the end of their lives with hospice care.
What are your hopes for the future of the palliative care sector?
MB: I hope that we continue to take the innovations and lessons learned during the pandemic and remain open to the diverse ways in which palliative care can be provided to all persons at any age or type of illness. This also includes incorporating ‘non-traditional’ roles such as community health workers and lay navigators into our team to expand our reach. Finally, we need to increase our attention and services for family and friends of those with serious illness to minimise the trauma that can occur to those who love the person we care for. Simply put: “Palliative Care for Everyone, Everywhere!”
CWW & HJK: Although we are facing a global pandemic, patients nearing the end of life can continuously receive the extra layer of hospice care to focus on the best quality of life and maximise their comfort. In addition, we hope to raise public awareness regarding hospice care and to expand hospice/palliative care facilities to improve accessibility to hospice/palliative care.