Reflection
Author: LING Cheuk Chi Gigi (RN, PhD), The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong

Throwback to a few years ago, a poll in UK revealed that persons over 50 are more terrified of developing dementia or getting cancer than other chronic illnesses (“Older people are more scared of”, 2014). Meanwhile, living and dying with comorbid cancer and dementia becomes increasingly prominent with the ageing population (McWilliams et al., 2018).

Family caregivers often devote a considerable time and effort in providing physical and psychosocial care to their loved ones during the end-of-life.  Providing end-of-life care for persons with either dementia or cancer is well-known to be a stressful and burdensome experience (Secinti et al., 2021). The comorbidity of cancer and dementia might further amplify the intricacies of the end-of-life caregiving experience when the person’s physical, cognitive, emotional, and behavioural aspects are affected altogether at the same time by both illnesses. Understanding the unique struggles encountered by this specific group of family caregivers is essential to provide information in the development of nursing interventions to effectively support both the persons with comorbidity and their family caregivers. Nonetheless, limited studies have acknowledged this unique family caregiving experience.

In view of this, an interpretative phenomenological analysis (IPA) was employed to examine the unique end-of-life caregiving experience among family caregivers of persons with comorbid dementia and cancer (PwDnC). Twenty-one family caregivers of deceased PwDnC with diverse backgrounds and characteristics were recruited purposefully from a palliative care unit in Hong Kong. A total of eighteen semi-structured interviews were done as some caregivers in the same family were interviewed together. The audio recordings were then transcribed and analyzed in accord with the principles of IPA. This study yielded a high volume of information. The findings shared below is only part of the data set that mainly focus on the unique internal struggles that encountered by the family caregivers of PwDnC.

A main theme of unconfirmable silent suffering is unveiled with two subthemes that capture family caregivers’ internal conflict and perception towards the pain of their loved ones: (1) uncertain silent of dementia and (2) undoubted suffering of cancer. Family caregivers in this study believed cancer was the origin of noxious and yet their loved ones could not express their cancer pain due to the unexpressive nature of dementia. These two fallacious beliefs collided when dementia met cancer and ascribed to a sense of silent suffering and worries in family caregivers of PwDnC. On one hand, family caregivers worried their loved ones were suffering silently. On the other hand, family caregivers were also suffering from their own uncontrollable worries, which resulted in their immobilization and helplessness in providing care and management symptoms.

These findings give voice to the family caregivers and acknowledge the intricacy of family caregiving in the context of comorbid cancer and dementia. From the findings, we could see that the cancer diagnosis, the grave prognosis, and the possible interactions of all the new and preexisting signs and symptoms might increase family caregivers’ sense of uncertainty and resulting in impertinent worries regarding cancer pain. Taking account of the diversity of family caregivers, careful considerations is needed to develop appropriate assessment and relevant education for this unique group of family caregivers to reduce the ambiguity and uncertainty of caregiving. Further research is suggested to better understand the impact of perceived silent suffering to enable healthcare professionals and family caregivers to provide better care and symptoms management for persons with comorbid cancer and dementia.

All in all, family caregivers suffered not because of the heavy burden of caregiving, but because they loved and cared about their loved ones.

Image: Captured through my lens: Suffered from your Pain. Chinese ink on rice paper

Inspired by the data, I created this Chinese Calligraphy during data analysis in 2020. It represents the interpretation and perception of reciprocal suffering through love and caregiving.

References

• Older people are more scared of dementia than cancer, poll finds. (2014, August 4). The Telegraph.      https://www.telegraph.co.uk/news/health/elder/11008905/Older-people-are-more-scared-of-dementia-than-cancer-poll-finds.html
• McWilliams, L., Farrell, C., Grande, G., Keady, J., Swarbrick, C., & Yorke, J. (2018). A systematic           review of the prevalence of comorbid cancer and dementia and its implications for cancer-related care. Aging & Mental Health, 22(10), 1254-1271. https://doi.org/10.1080/13607863.2017.1348476
• Secinti, E., Lewson, A. B., Wu, W., Kent, E. E., & Mosher, C. E. (2021). Health-Related Quality of Life: A comparative analysis of caregivers of people with Dementia, Cancer, COPD/Emphysema, and Diabetes and Noncaregivers, 2015–2018 BRFSS. Annals of Behavioral Medicine, 55(11), 1130-1143. https://doi.org/10.1093/abm/kaab007

This study was presented at ICCN2022 virtual conference.

Registration for ICCN2022 virtual library now open. For more information, please access https://www.iccn2022.com/registration/

Yiyuan Zhao¹ （RN，MSN，NP）, Jingjing Wang¹  （RN，BN）, Yanli Wang²（RD）, Yening Zhang³（MD）, Ying Zhang¹（RN，BN）, Bin Zhang¹（MD，Professor）, Yuhan Lu⁴（RN，MSN，NP, Professor）

1. The Key Laboratory of Carcinogenesis and Translational Research (Ministry of Education), Department of Head and Neck, Peking University Cancer Hospital & Institute, Beijing, China

2. The Key Laboratory of Carcinogenesis and Translational Research (Ministry of Education), Department of Nutrition, Peking University Cancer Hospital & Institute, Beijing, China

3. The Key Laboratory of Carcinogenesis and Translational Research (Ministry of Education), Department of Psycho-oncology, Peking University Cancer Hospital & Institute, Beijing, China

4．The Key Laboratory of Carcinogenesis and Translational Research (Ministry of Education), Nursing Department, Peking University Cancer Hospital & Institute, Beijing, China

Rehabilitation management is crucial for postoperative inpatients with head and neck cancer (HNC) to reduce treatment related complications such as excessive salivary flow, anastomotic fistula and poor nutritional status. Recently, we conducted a study that aimed to establish a Nutrition-Rehabilitation Multidisciplinary Team (NRMDT) led by nurses and evaluate the effects of adopting this model in rehabilitation management on improving clinical outcomes among patients with HNC.

The NRMDT consists of a group of experts--surgeons, oncology nurse specialists, registered nurses, dietitians, palliative care physicians (Figure). The oncology nurse specialist in this department is also a certified Dysphagia Specified Nurse. The NRMDT is led by the oncology nurses who play essential roles in nutritional and symptom assessment, coordination of and monitoring multidisciplinary perioperative care (Table). They also provide a food-intaking-transition training to patients who have postoperative dysphagia (Picture).

Quasi-experimental design with a sequential sampling method was used in this study. The study was carried out from January 2017 to August 2021. A total of 49 HNC patients recruited were divided into the NRMDT group (n=38) and the control group (n=11). Patients in the control group received usual care from January 2017 to April 2018, whereas those in the NRMDT group were offered nutrition and rehabilitation management during the period of May 2018 to August 2021.Clinical outcomes including rates of weight loss, gastric tube dwelling time, the positive ratio of secretion, the occurrence rates of anatomic fistula, rates of hypoproteinemia, and length of stay were collected. SPSS software V.22.0 was used for data input and statistical analysis. Chi-square and independent-sample t-test were used to evaluate the clinical outcomes between these two groups.  

The positive ratio of secretion in the NRMDT group was significantly lowerthan that in the control group（13.16% versus 45.45%, P=0.02).  Furthermore, 2.63% of patients underwent anastomotic fistula in the NRMDT group, which was significantly lower than that in the control group (36.36%, P=0.01). The participants in the NRMDT group reported the proportion of weight loss and hypoproteinemia was 43.75% and 15.79% respectively, versus 54.54%(p=0.47) and 36.36% (p=0.29) in the control group. The days of gastric dwelling time and hospital length of stay were 16.87±7.91 and 19.89±6.31 in the NRMDT group compared with 21.18±9.87 (p=0.14) and 23.73±10.53 (p=0.27) in the control group.

This study demonstrated that the model of NRMDT may reduce the positive ratio of secretion and occurrence of anastomotic fistula among patients undergone surgery with HNC. A full‑scale study is warranted to examine its effects on improving other clinical outcomes for these patients.

Appendix

Figure                  The team members of NRMDT

 

Picture         Assessment of dysphagia

Table    Roles of nurses in the NRMDT model

	Oncology nurse specialist	Registered nurse
Preoperative stage	Quality control and management of perioperative and multidisciplinary care	Assessment of symptoms and food/fluid intake and output, coordination of multidisciplinary care, and timely respond to patients’ needs
Early stage of postoperative	Quality control and management of perioperative and multidisciplinary care	Coordination of multidisciplinary care, provide post-operative care, timely respond to patients’ needs
Rehabilitation stage	Assessment of dysphagia, nutritional status, provide food-intaking-transition training to HNC patients	Implementation of oral intake/ nutrition plan designed by oncology nurse specialist / dietitian
Stage of discharge and home-nursing	Follow-up all the discharged cases in the online or face-to-face nursing clinic	Provision of general health education and evaluation (with other team members if needed)

This study was presented at ICCN2022 virtual conference.

Registration for ICCN2022 virtual library now open. For more information, please access https://www.iccn2022.com/registration/

Authors: Yongyi Chen, Yang Liu, Junchen Guo

Affiliations: the Palliative Care Committee of China Anti Cancer Association (CACA)

On April 23, Parallel session of Palliative Care for 2021 Chinese Conference on Oncology (CCO) was held online. A total of nearly70,000 experts and representatives have attended this conference.

Those who share the same aspirations are not far away

Daiming Fan, the chairman of China Anti Cancer Association (CACA), attended the opening ceremony and delivered a speech. He pointed out that palliative care is at a flourishing stage. As the first palliative care conference for annual CCO, more and more health care workers would benefit from this influential conference. The integrated perspective and multi-dimensional strategies would be applied to improve the whole life cycle health.

Yazhou Xiao, the Director of the Palliative Care Committee of CACA, extended a welcome speech. He called on palliative care workers to work together for the better palliative care collaboration, the more refined quality improvement, and the higher level of science and technology innovation. The ultimate goal is to achieve the improvement of the quality of life for end-stage patients.

The video "Journey of Life, Love is always there" filmed by the Association was played at the conference. A book release ceremony for "Love in Peace: narrative stories from the palliative care ward" was held. Prof. Ruixian He, Xiaoxia Xu, Zhangyu Pan, Huiqing Yu, and Yongyi Chen were served as the hosts of the conference.

Those who are in harmony do not regard the region as the boundary

The conference comprised of three modules: The development of palliative care, the practice of palliative care, spiritual comfort and quality management of palliative care.

Concurrent Session 1: The development of palliative care

The topic of Prof. Yazhou Xiao was"Palliative Care: Protecting the dignity of the last mile of life", shared the review and reflections of understanding the development process of palliative care from various angles, the responsibility of promoting the steady development of palliative care from multiple dimensions, the practice of improving the service capacity of palliative care through multiple channels, and the countermeasures and prospects for the all-round development of palliative care with multilevel assistance. He emphasized that the "last mile" of life is a livelihood project and a system project that requires the joint efforts of all medical staff and even the whole society.

In "Palliative Care Development in China: Past, Present and Future", Prof. Jin Gu from Peking University Cancer Hospital elaborated on the development and practice of palliative care in four aspects: the unprecedented changes in a century, the changes in doctor-patient relationship, and the construction of palliative care centers, medical humanities and hospital culture. He introduced how to spread the concept of palliative care and led the behavior of medical care, so as to arouse more attention and investment in palliative care from the society.

Concurrent Session 2: The practice of palliative care

ProfGuijun Lufrom Tsinghua Changgeng Hospital in Beijing elaborated"Palliative Care Discipline Development and Professional Practice Outlook" in three aspects:re-examination of medical model, palliative care discipline development, and thepractice outlook. He reviewed the demand, current situation, and policy evolution of palliative care in China. He also put forward "four assessments": funeral assessment, burial assessment, grief assessment, and growth assessment, as well as the "five satisfaction": the deceased, bereaved families, teamwork, policy integration, and self-satisfaction.

Prof. Wenwu Cheng from Fudan University Cancer Hospital shared his in-depth analysis of the difficult issues of palliative care in clinical practice in "Difficult aspects of palliative care in clinical practice". He offered corresponding countermeasures and suggestions on how to promote the concept of palliative care, popularize knowledge and education, formulate corresponding norms to safeguard the rights and interests of all parties, improve the breadth of coverageand perfect the protection system, build a diversified model for quality services.

Concurrent Session 3:Spiritual comfort and quality management of palliative care

Prof. Yifang Wang shared his plenary address regarding "Spiritual Comfort at the End of Life in Chinese Cultural Perspective". His speech began with traditional Chinese folklore and expanded to physical, psychological, social, and spiritual palliative care, multiple and multidirectional transmission of holistic concepts, philosophical rhetoric and philosophical categories. He also shared the concept and historical of spirit development, the essence of spirit, and spiritual care from the perspective of care, analyzed the concept of death, near-death experience, and near-death image, and emphasized the importance of spiritual comfort at the end of life.

Prof. Yongyi Chen of Hunan Cancer Hospital shared the practice of quality management from the perspective of high-quality development of palliative care. She explained in detail the model, assessment tools and management exploration of palliative care quality management around three aspects: opportunity, practice and prospects. She believed that rigorous and scientific quality management will help to realize the systematization of the quality assessment of palliative care and the homogenization and standardization of the quality assessment of palliative care.

Those who know each other are not thousands of miles away.

The conference set up an "expert connection" session, three experts discussed online and explored the future development of palliative care.

Prof. Ping Zhao of the Cancer Foundation of China reviewed the development history of palliative care. He pointed out that although China moved up from the 71^st to 53^rd in the Death Quality Index released in 2021, there was still significant space for improvement in death quality.

Prof. Duanqi Liu analyzed the palliative home care model in the context of normalized COVID-19 pandemic. He believes that advanced cancer patients are a rather vulnerable group under the COVID-19. He emphasized it was necessary to realize the integration and coordinated development of needs, resources, and professions from the perspective of integration.

Prof. ShiyingYu from Tongji Hospital considered that how to transform the realization of palliative care wishes into concrete actions is a question worthy of in-depth consideration. We can refer to the international document, standards, and guidelines on the core elements of palliative care to retain the dignity of terminal patients,

Prof. Yongyi Chen made a summary of the conference. In the future, the committee will continue to take the responsibility to realize service optimization to get out of the "acceleration" of the high-quality development of palliative care, utilized the ability to press the "fast-forward key" of the high-quality development of palliative care, and carry out popular science education to drive into the "fast lane" of the high-quality development of palliative care.