The current home hospice care model includes not only hospital-based teams but also community-based home hospice teams composed of primary healthcare personnel from local communities. These community teams offer care of comparable quality to hospital teams and provide the advantages of more immediate and accessible service, making the goal of dying at home more attainable.
As the concept of palliative care becomes more widespread, public acceptance has notably increased. Dying at home is a common wish among terminally ill patients and the general public. Traditionally, home hospice teams have been made up of hospital-based medical staff, but logistical constraints such as transportation and staffing issues can hinder timely care. When faced with rapidly changing conditions in terminal patients, family members often struggle to manage alone and may opt to transfer the patient to the hospital, resulting in the patient spending their final days in transit between the home and the hospital.
To enhance the capacity for home hospice services and fulfill the wish of dying at home, the Ministry of Health and Welfare introduced Community-based Home Hospice Care (Type B) Benefits in 2014. This policy relaxed training requirements for physicians and nurses at local health centers, clinics, and home nursing stations, encouraging these primary care providers to establish hospice teams and offer community-based home hospice services.
Creating a Win-Win Scenario for Hospitals, Communities, and Patients
Dr. Chien-Yi Wu, who trained at Kaohsiung Medical University (KMU) Chung-Ho Memorial Hospital during his residency, has been deeply involved in hospice care. Following his interest in the field, he remained at the hospital as a family medicine physician, focusing on palliative care.
Through his work, Dr. Wu discovered that despite government efforts to promote community-based hospice care, 95% of home hospice care was still managed by hospitals. He identified that patients often preferred to stay with their original hospital teams due to established relationships, while community clinics were less engaged in hospice care due to lower insurance reimbursements and limited confidence in providing such care. This reluctance has made it challenging to build a robust community-based hospice network.
Dr. Wu has long aspired to develop a community-based hospice system similar to those abroad. "I hope to integrate hospital and community home hospice resources to provide more suitable care for patients."
To advance community hospice care, the Ministry of Health and Welfare introduced the Promotion of Community Hospice Care Model Project, selecting key hospitals to provide professional support to local clinics, health centers, and community nursing institutions. The goal was to connect hospital and community resources to deliver comprehensive home hospice services. In 2018, Dr. Wu successfully secured funding for KMU, making it the only hospital in Kaohsiung to be part of this project.
After receiving the subsidy, Dr. Wu led the KMU hospice team to Nantou to learn from Dr. Yih-Chyang Weng, Director of Radiation Oncology at Nantou Hospital, who had been successfully promoting community-based hospice care in Nantou since 2008. Subsequently, they organized a meeting with various clinics and home nursing stations in Kaohsiung, forming the KMU Community-based Home Hospice Network.
Once the network was established, KMU's hospice case managers evaluated and communicated with patients and families to understand their preferences and locations, initiating referrals to appropriate community-based hospice teams. KMU served as the core hospital, providing guidance and establishing a collaborative care model with community teams. "We're not concerned about losing patients; we refer them when appropriate to help build community care capacity, aiming for a win-win situation for KMU, the community, and the patients," says Dr. Wu.
In the initial stages, KMU's team conducted the first visits with community teams to build confidence among patients and community providers. They also created a LINE group for continuous communication between the community teams and KMU, ensuring a seamless transfer mechanism. Regular monthly meetings were held, inviting community teams to the hospital for case discussions, thereby enhancing their care capabilities and practical experience.
Dr. Wu addresses concerns about patient deterioration after referral by explaining, "We reassure patients and families that referrals are intended to find nearby teams for suitable care. Community teams are professional providers, and if acute issues arise, KMU will manage them. Community-based home hospice care is a two-way process; we continue to monitor and assess referred patients to ensure high-quality care."
Connecting with Community Pharmacies to Establish a Comprehensive Network
Dr. Wu notes that even after the one-year project concluded, KMU's community-based home hospice network has continued to thrive, referring 70 to 100 patients annually to community home hospice teams. These teams have now become quite adept at providing hospice care independently, with KMU offering supplementary support as needed.
The integration and expansion of this network have broadened KMU’s home hospice services beyond a 30-minute drive, extending north to Lujhu and Alian, and south to Daliao and Linyuan. This expansion ensures a wider coverage area and better supports patient needs.
To assess the effectiveness of community-based home hospice care, Dr. Wu conducted a retrospective study analyzing the medical records of 138 KMU home hospice patients from the project period. The study found that 48 patients were successfully referred to community home hospice care. "Once the hospital initiates the referral process, about 30% of patients are willing to accept community-based hospice care, demonstrating the critical role core hospitals play."
Regarding visit frequency, physicians from community clinics often visit patients only when their schedules allow, due to their other practice commitments. In contrast, community nurses show higher flexibility and frequently visit patients. Consequently, KMU refers patients to community nurses first, who then coordinate with physicians to form community-based home hospice teams. Dr. Wu explains that the regular visits by community nurses help them build strong, trusting relationships with patients and their families. Many patients receiving community-based home hospice care are able to spend their final days at home, successfully fulfilling the goal of dying at home.
Furthermore, the community-based home hospice network also involves community pharmacies. Patients in palliative care often require narcotic pain relief medications, which are expensive and classified as controlled substances, making it less likely for general pharmacies to stock them. This leads to patients having to return to the hospital for their medications, despite opting for community-based home hospice care. To address this issue, the Kaohsiung City Health Bureau has promoted the Controlled Drug Collection Cooperation Model for Home Hospice Care, encouraging community pharmacies to collaborate with community home hospice care clinics to handle prescriptions for controlled substances. This initiative allows patients' families to conveniently pick up medications nearby, enhancing the overall community-based home hospice care network.
Prospective Study to Develop Home Hospice Shared Decision Making (SDM)
Dr. Wu has long wished to analyze the effectiveness of KMU's community-based home hospice promotion using medical economics. In 2022, he applied for the Hospice Foundation’s Hospice Care Advocacy, Education, and Research Project grant to conduct a prospective study on Cost-Effectiveness Analysis of Community-based Home Hospice Care.
Unlike previous retrospective studies that analyze data after the fact, this prospective study obtained consent from patients and their families in advance and passed ethical review. It involved designing questionnaires and recording the actual time spent at each stage of patient care to conduct a cost-effectiveness analysis of community-based home hospice care.
Dr. Wu admits that due to limited manpower, accurately calculating the time spent during visits was challenging, and some data were recorded afterward. "However, we strive to collect data as soon as possible after the patient’s death, rather than waiting a year to review medical records as in previous retrospective studies."
For this research, Dr. Wu and the KMU team developed a Shared Decision Making (“SDM”) assessment form for home hospice care, addressing the issue of unilateral decision-making previously predominant in hospitals. Dr. Wu integrated his experiences and knowledge from developing the community-based home hospice network into the SDM assessment form to help patients participate in decisions and select the most appropriate care model.
Dr. Wu's research indicates that in 87 SDM cases, the average anxiety scores of patients and families (on a scale of 10) decreased from 3.5 before SDM to 2.5 after SDM, significantly reducing their anxiety and worry.
Dr. Wu explains that facing the unknown inevitably causes anxiety. The SDM assessment form not only educates patients about home hospice care, but also assists them in making informed choices between hospital and community-based home hospice teams based on SDM guidance. This approach provides patients with more options and helps ensure that their final moments are free of regrets.