On 17 November 2021, we hosted our final webinar of 2021! We were honored to have had Dr Sayaka Takenouchi, Associate Professor at Kyoto University Graduate School of Medicine Department of Fundamental Nursing, deliver her insightful presentation on Conversations that Value What Matters to Patients with Serious Illnesses- A Nursing Perspective.
Due to time constraint, we were not able to get through all the questions posed during the Q&A session. Dr Takenouchi has kindly answered the remaining questions in her own time:
*Participant names have been removed for privacy purposes
Q: What are the challenges in multi-professional collaboration especially in ACP, and how to fix or get through that challenge?
Thank you for your important question. In Japan, many medical professionals have heard of ACP but do not fully realize its significance or do not have specific skills. Therefore, in multidisciplinary collaboration, it is necessary first to have individual members learn the concept and particular skills of ACP. Japanese ministries are providing support for ACP training for health care professionals, which is very much appreciated.
I have carefully explained the importance of this project to the hospital administrators, including the medical director, the head of the nursing department, the head nurse, the director of the pharmacy department, etc., and they are supportive of the project, which is also a powerful backing to promote multidisciplinary collaboration.
Q: What is your experience with family members? Sometimes the patient is ready, but the family carer is reluctant to let them have this conversation.
I see your point! I have faced similar challenges regarding family members being present in conversations.
What I find on a daily basis is that patients often look/behave differently when they are alone than when they are participating in conversation with their families.
For this reason, in the first few interviews, we try to have the patient participate alone as much as possible. Then, with the patient’s consent, we try to have them speak in their own words. In this way, we can learn about the changes in the patient when the family is present. Patients who are reserved or worried about the reaction of their family members usually speak with great concern for their family members’ response and often let them speak for themselves. When the difference between the patient’s own opinion and the patient’s opinion when the family is present becomes clear, we would also be able to see how we should talk to the patient and the family in the future.
Q: Thank you so much for your impressive presentation. Could you let us know how you cooperate with other members of your team to update patients’ ACP? (hospice team, social worker,… who could talk to the patient about their values and wishes as well)? Is it necessary to review ACP more often to update that information or only when the sickness gets worse?
Thanks for your question! When I work with my team members to update patients’ ACPs, I try to get them to keep the conversation in their medical records with as much detail as possible. And although I wasn’t able to present this information in yesterday’s presentation, I will also prepare a template for the record to update the information in a timely manner, as systematically and comprehensively as possible. Information that is not important enough to be written in the medical record, but is of some concern, is sometimes communicated in a casual, verbal manner.
As you pointed out, it depends on each patient whether it is better to check the information every few months or to reconfirm it as the patient’s medical condition changes. Still, I believe that we should always update the information when there is a significant change in the course of treatment or when there is a change in the place of medical treatment/care provision.
Q: Hi Dr Takenouchi thank you for your fabulous presentation. May I know how often do you review ACP with your patients and what are some of the ethical issues you experience as an ACP facilitator?
The frequency of updates/reviews of information related to the ACP is as described above.
The ethical issue that I face when facilitating ACP is when there is a discrepancy between what the patient’s attending physician thinks is the best course of treatment and what the patient wants. As a nurse, I can understand both perspectives. When I try to communicate the patient’s wishes to the attending physician as a patient advocate, there are times when the attending physician is annoyed or does not accept the patient’s opinion as unreasonable. Even so, I try my best to remain a patient advocate, but I feel a great deal of moral distress because it may adversely affect the trusting relationship that the physician and I have built.
Q: The life-line review was quite an interesting concept. What pros and cons do you think there will be if it is incorporated into ACP discussions?
Thank you for your interest in the Life-line Interview Method (LIM) and our research! The LIM has the advantage of being able to assess the patient’s life and illness trajectory along with their emotional ups and downs, with no/minimum emotional burden for both the patient and the medical provider. Since major emotional ups and downs due to life events are often related to the person’s values, it is a great advantage to be able to get an idea of the person’s values by asking the reasons for the emotions of each of these events! The average time required is about 15 minutes.
As you might notice, the LIM would be one of the accessible tools for us to utilize in our practice, but the concern is that it may be too time-consuming for physicians to use during their limited outpatient clinic hours. Also, some patients may go on and on about their life history in the LIM, and it needs to be used when there is little time to spare.
Q: Thank you so much for an excellent and very insightful presentation, Dr. Takenouchi. How do you motivate and encourage the nurses who hesitated to fully participate in ACP? When do nursing students learn about ACP in Japan? Thanks
Thanks for asking such an important question!
In order to motivate nurses and promote the practice of ACP, I am first focusing on educational activities, providing training not only in knowledge but also in conversational skills that can be used in clinical practice.
Some nurses are hesitant to engage in ACP because they see it as a unique and challenging initiative. So I encourage them first to try to focus on understanding what matters most to the patient by using the basic skills of nurses: listening and empathy.
I also encourage nurses to work with a team of doctors, nurses, and other health care professionals in good cooperation, as it is not advisable for a single profession to practice it alone, as has been claimed in existing papers.
Whenever I have the opportunity, I try to emphasize the importance of weaving ACP conversations into our daily nursing practice.
Regarding basic education on ACP, unfortunately, ACP is still not mandated in the curriculum offered to nursing students in Japan. However, we believe that there are many nursing faculty members who recognize the importance of ACP. Therefore, we expect that ACP will be taught to students by more nursing instructors through palliative care education, which is currently mandatory.
Q: Sayaka, would you be able to share with us the Advanced Directive document (should there be any) that the Japanese Palliative Care team uses in daily work? Thank you
Thanks for joining the webinar and your question! Unfortunately, there are no official advance directives in Japan. For this reason, our team only records the essential information in the appropriate section of the medical record.
A huge thank you to everyone who attended the webinar session, we were truly overwhelmed by the great response! Stay tuned for the announcement of our 2022 Webinar Series!