Striving for Palliative Care that Leaves No One Behind: Aiming for a Communication Barrier-Free Reality

Released on April 3, 2024.

 

Are you familiar with the “Pain Diary”?

 

This diary is a pain management tool that serves to support patients with cancer by allowing them to record their pain levels and perceptions and share them with healthcare professionals.

 

You might wonder why a pharmaceutical company would create a “Pain Diary.” SHIONOGI is actively engaged in research and development in the palliative care sector and in disease awareness initiatives, with the goal of supporting patients who are struggling with illness.

 

The marketing department of the palliative care sector plays a key role in these efforts. This department aims to support the patients’ everyday needs and persistently address complex issues to achieve “Palliative Care for Everyone” and “Pain Treatment for Everyone.”

 

As part of the palliative care marketing team and involved in the creation of the “Pain Diary,” Yasuhide Yamaguchi reflects on his journey and shares his passion for palliative care.

Only patients with cancer truly understand the pain that this disease inflicts. To alleviate this pain, it must be conveyed accurately. Nevertheless, many patients struggle to articulate their pain, feel that they must endure it, or believe that their pain is misunderstood. To address this, we created the “Pain Diary” under the supervision of the Palliative Care Center at the Japan Cancer Research Foundation Ariake Hospital in order to help patients accurately communicate their pain.

Pain varies greatly in terms of intensity, location, and type—whether it is a stabbing or throbbing sensation—hence, it must be conveyed as precisely and truthfully as possible. The “Pain Diary” is helpful in this regard, with creative features allowing patients to record the intensity, nature, location, timing, impact, and coping methods of their pain using illustrations and symbols. To consider the most appropriate pain management for the patient, medical staff can use the information in the diary.

Patients with cancer can lose their sense of self due to the disease and its treatment, leading to job loss, diminished social interactions, and a loss of hope for the future. The initiative began with the desire to create an avenue where patients can remain true to themselves despite such losses. We were determined to make the diary accessible not only to patients using our products but also to those using others.

Exactly. Over a decade ago, while working as a medical representative at a cancer hospital, I realized how shallow my understanding of suffering was through discussions about pain and distress with doctors, nurses, and pharmacists.

 

Alleviating physical pain is crucial, but it only addresses a part of the pain that patients with cancer experience. Empathizing with emotional pain is also essential, which is why promoting a correct understanding of palliative care and medical narcotics, as well as fostering appropriate communication with patients, families, and healthcare professionals, is a significant theme for us.

Aside from cancer, many patients with cancer also suffer from other conditions or symptoms, including infections, diabetes, back pain, or dementia. Recognizing that the suffering from cancer is not simply physical pain motivated us at SHIONOGI to explore what more we could do.

Yes, from the perspective of palliative care and CBF-PJ from the perspective of hearing impairments, we both strive to improve communication gaps. This shared vision led us to collaborate with CBF-PJ, aiming to create an avenue where patients with cancer and hearing impairments can correctly understand palliative care and medical narcotics.

Oftentimes, cancer, its treatment, palliative care, and medical narcotics are explained to patients in a stressful and anxious manner, making it difficult for them to understand and recognize the information accurately. The amount and quality of information depend on the interpreter’s understanding and perception, and it is challenging for patients with hearing impairments to convey their pain and discomfort accurately.

Through interaction with CBF-PJ members, we started focusing on the diversity of patients with cancer and initiated the “Pain Diary × CBF-PJ” project. This project is still in its early stages, and we are currently discussing what kind of diary should be created.

 

Medical professionals who supervised the “Pain Diary” have commented that using the diary can signal to patients that “It is okay to talk about your pain” and “The main character in pain relief is the patient themselves.” They suggest that we should consider materials that are easy to use not only for patients with normal hearing but also for those with hearing impairments.

By collaborating with CBF-PJ and creating synergy, we aim to develop a “Pain Diary” that is adaptable to the external environment and incorporates diversity, equity, and inclusion perspectives. At present, we are discussing whether to enhance the diary itself, incorporate elements of Universal Design to create something new, or consider a completely separate approach.

 

By incorporating various opinions and ideas, we aim to create a “Pain Diary” that truly empathizes with patients. We believe that by nurturing this new norm in the medical field, we will eventually achieve “Palliative Care for Everyone” and “Pain Treatment for Everyone” when the seeds we plant blossom.

 

※The information in this article is based on the situation at the time of the interview.