Research from abroad shows that purposeful and meaningful conversations are crucial for patients with limited time. Effectively using a Question Prompt List (QPL) can significantly reduce decision-making difficulties for patients.
Entering the field of hospice care often means stepping into confusion. This sentiment resonates deeply with Ya-Chun Cheng, a supervisor in the Nursing Department of Hualien Tzu Chi Hospital. Despite over two decades of the Palliative Care Act being in effect, Cheng observes that challenges still persist, making it difficult for families and medical teams to navigate this path smoothly. One of the most significant hurdles remains effective communication.
Communication Barriers in Hospice Care
A family member of a patient who received hospice care shared with Cheng that, even long after their loved one passed away, they felt more confusion than gratitude when reflecting on that period. “At the time, we couldn’t fully understand the information provided by the medical team,” the family member admitted.
They expressed that although they had many questions, they didn’t know how to ask them or even how to articulate their concerns clearly.
Another family member told Cheng that if they had better understood the hospice care’s philosophy and processes before receiving it, the hospice team could have provided more assistance with managing the patient's symptoms and preparing the family mentally.
Cheng recalls instances where she observed family members nodding repeatedly in agreement with the doctor’s explanations during consultations, only to quickly ask a nurse afterwards, “What did the doctor just mean?” Although the nurse patiently explained, the family had already missed the best opportunity to voice their doubts.
Cheng explains that the communication gap arises from several factors, such as the patient’s health literacy and the limited time available during consultations. Furthermore, hospice care carries stigmas for some people, such as being associated with “waiting to die” or “being abandoned,” which leads the medical team to vaguely suggest options like, “Let’s see if another doctor can help,” or “Maybe we can try another approach.”
The difficulties in hospice care became more apparent to Cheng after she took on the role of supervisor for hospice care and adult oncology. While she was pleased to see some cancer patients receiving shared care with hospice, she also noticed that many patients and their families did not fully understand the role of the hospice team. Instead of being gently referred, they often felt forced into accepting hospice care, which led to less-than-ideal outcomes. Unwilling to see this cycle repeat, Cheng resolved to make a change.
Question Prompt Lists: Bridging Doctor-Patient Communication
In recent years, doctor-patient communication in Taiwan’s healthcare system has improved significantly, thanks to various efforts. Specifically, the Health Promotion Administration and the Joint Commission of Taiwan have introduced various Question Prompt Lists (QPLs) to facilitate shared decision-making in medical care. These lists are available for surgeries, medications, cancer treatments, and more. Patients can review these lists before consultations to think about what questions they need to ask, alleviating some of their concerns.
“However, there currently isn’t a relevant prompt list for hospice care in Taiwan,” Cheng noted. This led her to consider, “When patients and their families enter this unfamiliar field of hospice care, can we provide them with some guidance to help alleviate their confusion and understand what questions to ask?” With the support of her two PhD advisors and funding from the Hospice Foundation of Taiwan, Cheng began researching a “Question Prompt List for Advanced Cancer Patients and Their Families in Hospice Care.”
“In the clinical setting, good communication and listening are important, but asking the right questions is the key,” Cheng emphasizes. She believes that although Taiwan is moving towards precision medicine, the time available during consultations is still very limited. A QPL can help get to the heart of the matter quickly, “allowing patients to directly ask about their concerns and the medical team to respond to their needs.”
During the development of the QPL, a patient offered Cheng valuable feedback. He recalled that when hospice care was first initiated, he was simply told, “We can ask another team to assist you, and we’ll see if this can make you feel more comfortable.” But he didn’t understand what “we’ll see” meant and he felt lost until a doctor clearly stated, “Shortness of breath is your most uncomfortable symptom right now; let’s address that first.” This direct approach helped him understand how the hospice team could assist him.
“Clearly stating the primary goal of the treatment helps patients receive the most effective care,” Cheng concludes. She believes that the design of a QPL must be straightforward and concise, helping patients and medical teams focus on the key issues. This approach avoids vague questions such as, “Do you have any questions?” which often leave patients unsure of where to begin.
In her review of the literature, Cheng also discovered that the development of QPLs for hospice care abroad is already quite advanced. After obtaining a QPL, patients can prepare their questions before the next appointment, with case managers providing guidance before they meet with the doctor.
However, after considering the differences in cultural practices, health literacy, and medical systems between Taiwan and other countries, Cheng realized that foreign QPLs were not suitable for use in Taiwan. She concluded that there is an urgent need to develop localized QPLs specifically for advanced cancer patients and their families in Taiwan’s hospice and palliative care settings.
Enhancing Quality of Life on the Final Journey
After a year of interviews and surveys, Cheng completed a QPL containing 25 questions. Preliminary results revealed that patients and families who used the QPL experienced significantly reduced anxiety after their consultations.
This outcome convinced Cheng of the necessity of QPLs in hospice care. She believes that patients who lack critical information for making treatment decisions may experience poor care and quality of life at the end of life. On the other hand, early communication and proactive guidance from medical teams can increase the acceptance of hospice care among patients with advanced cancer.
Cheng explained that her current QPL is focused on advanced cancer patients rather than terminal cancer patients due to her extensive clinical experience.
“In the past, we often encountered patients who passed away the day after being admitted to the hospice ward. We don’t want to see that happen,” she recalled. Cheng shared the story of a patient who not only received shared hospice care early but also continued with home hospice care. Even when he was readmitted, he was smoothly transferred from the acute care ward to the hospice ward. “This means that many patients can go home and spend more time with their families if they receive proper hospice care,” she said. “This is why we want to promote early palliative care for advanced cancer patients.”
“Although the initial draft of the QPL is completed, I hope to refine it even further,” Cheng said. She plans to collaborate with hospice care experts and make any necessary adjustments before applying the QPL in clinical settings. “I hope to complete it within a year so that advanced cancer patients can benefit!”