Identifying End-of-Life Preferences Among Chinese Patients With Cancer Using the Heart to Heart Card Game

Abstract

Background:

Understanding the preferences for end-of-life (EOL) care is imperative in providing quality care to patients with life-threatening illness. However, it is difficult for patients, families, and health-care providers to initiate EOL conversations in China. An easy-to-use tool that could help health-care providers initiate EOL discussions is the Heart to Heart Card Game (HHCG), originally designed for Chinese Americans.

Objective:

To evaluate the EOL preferences among Chinese patients with cancer using the HHCG.

Methods:

We conducted a descriptive study to assess EOL preferences using HHCG among patients at the oncology chemoradiotherapy department of a Chinese tertiary hospital.

Results:

We recruited 58 patients in total of which 40 (69%) patients completed HHCG. The most frequently selected card was “I want my family to get along,” followed by “I don’t want to be a burden to my family,” and “I want to maintain my dignity.” Among the 3 cards selected, social needs were rated as the most important (36.7%), followed by spiritual needs (35.8%), physical needs (20.0%), and financial needs (7.5%). The evaluation of the HHCG revealed that more than 70% of the participants highly valued HHCG.

Conclusion:

The HHCG can be used as a communication tool to encourage EOL discussions between cancer patients and health-care providers in China. Moreover, Chinese patients with cancer attach significant importance to their family and maintaining dignity at the EOL.

Keywords

end of life preferences Chinese patients with cancer Heart to Heart Card Game death discussion

Introduction

End-of-life (EOL) care is the support and care provided at the terminal phase of life. Understanding the preferences of EOL care is imperative in providing quality EOL care for patients with life-threatening illness.¹ However, initiating discussions about EOL issues are usually difficult for patients, families, and health-care providers.^2,3 Methods to improve EOL conversation in Western societies include EOL communication training, understanding and disclosure of prognosis, understanding the patient’s preferences, and family involvement.² However, the Confucian concept of filial piety and the taboo of talking about death in the Chinese culture further complicate EOL discussions in China.^4,5

An easy-to-use tool that could help Chinese health-care providers to initiate EOL discussions with patients is the Heart to Heart Card Game (HHCG; https://caccc-usa.org/en/activities/heart2heart.html) developed by Chinese American Coalition for Compassionate Care (CACCC). The HHCG was originally designed for Chinese Americans as a communication tool to identify EOL wishes, values, and preferences. After negotiating and reaching a work agreement with Coda Alliance, the CACCC derived the Go wish Card Game, a product of Coda Alliance that is widely used tool to identify individuals’ wishes related to EOL care in America and developed the HHCG based on concerns that Chinese were likely to have regarding EOL care.^6

-9 The HHCG was then tested and modified using focus groups to suit the Chinese American communities. We also conducted a pilot evaluation of the HHCG in China.

Honoring and ascertaining EOL preferences could maximize overall benefit for the patients, affirm a holistic view of patient’s needs, maintain patient autonomy, and improve patient satisfaction.¹⁰ Identifying EOL preferences could enable health-care providers to better understand patient concerns and ensure that EOL care is in line with their preferences, cultural needs, and expectations.¹¹ In recent years, Western researches have focused on patient’s values and priorities at EOL and not just on the preferences for life-sustaining treatment.^12
-14 Since talking about death is a taboo in China, most family members and health-care providers usually avoid discussing EOL preferences to protect the feelings of the patients.^15,16 Thus, patients rarely express their EOL preferences. Besides, cancer patients in China usually allow their family members to make EOL medical decisions for them.¹⁷ Since most family members of patients with cancer in China are not aware of the patients’ EOL preferences, they tend to choose life-sustaining treatment instead, out of filial piety.^5,18 This study, thus, aimed to evaluate the EOL preferences among Chinese patients with cancer using the HHCG.

Methods

Design

We conducted a descriptive study to evaluate the EOL preferences using the HHCG in the oncology chemoradiotherapy department at a tertiary academic hospital in Wuhan, China, between September and October 2019.

Patient Population

We recruited patients from the Oncology chemoradiotherapy department using purposive sampling. The criteria for selection of participants included a diagnosis of cancer using pathological examination, patients’ knowledge of diagnosis, age older than 18 years, cognitive and physical ability to sort and read the deck of cards, and to communicate with the researcher, voluntary participation, and family’s consent.

Tools

General information questionnaire

General information including participants' demographic information (age, gender, ethnicity, educational level, residence and marital status) and clinical information (diagnosis) were collected.

Heart to Heart Card Game

The HHCG consists of cards representing individual EOL preferences. Each deck of HHCG contains a total of 54 cards, including 13 Spades, 13 Hearts, 13 Diamonds, 13 Clubs, and 2 Jokers (Special Wish cards). Each of the 4 suits of a standard deck of playing cards represents a special need: hearts for spiritual needs, diamonds for financial needs, clubs for social needs, and spades for physical needs. Each category of needs further includes 13 different issues. The 2 “Special wishes” cards are blank and allow participants to add 2 personal issues not included in the other cards.

Heart to Heart Card Game Evaluation Form

The HHCG Evaluation Form, designed by CACCC, evaluates the effects of HHCG, whether patient’s views are respected, the promotional option for HHCG, and the willingness to participate in Advance Directives.

Procedures

A data collection team, constituting a researcher along with an oncology nurse specialist and a registered social worker working at the department, was formed. The oncology nurse specialist recruited participants, while the researcher introduced the HHCG to the participants. The participants were then instructed to choose 12 cards from the deck that were important to them (3 hearts, 3 diamonds, 3 clubs, and 3 spades) and set the rest of the deck aside. Further, the participants were instructed to choose 3 cards that are most important to them from the 12 cards. Subsequently, the researcher recorded the cards selected by the participants on the Heart to Heart summary sheets. The participants were required to complete the HHCG Evaluation Form after the game. The registered social worker provided psychological support for the participants if needed.

Data Analysis

We performed the descriptive statistical analysis using SPSS version22.The measurement data were presented as mean (M) and standard deviation (SD). The categorical data and card results were both presented as frequencies and percentages. Further, χ² test was used to compare the demographic and clinical differences in selection of the 3 cards.

Research Ethic

The researchers obtained written informed consent from both patients and their family prior to starting the card game and also informed participants that they had the right to refuse or withdraw their participation at any time. This study was approved by the institutional review board of School of Health Sciences, Wuhan University (2020YF2005).

Results

Demographic and Clinical Characteristics of the Participants

We recruited 58 patients in total of which 40 (69%) patients completed HHCG. Table 1 presents demographic and clinical characteristics of the participants. All participants were of Han ethnicity. The participants were aged between 25 to 80 years with a mean age of 56.4 years (SD = 11.66). Moreover, 65.0% were male, 90% were married, 67.5% lived in urban areas, and 60% had studied till high school or middle school. The 2 most common cancers were gastric cancer (37.5%) and colon cancer (37.5%).

Table 1.

Demographic and Clinical Characteristics of Participants.^a

Characteristics	n (%)
Age, mean (SD)	56.8 (11.66)
Ethnicity
Han Chinese	40 (100)
Gender
Male	26 (65.0)
Female	14 (35.0)
Educational level
Primary school or below	11 (27.5)
Middle or high school	24 (60.0)
College or above	5 (12.5)
Residence
Urban area	27 (67.5)
Rural area	13 (32.5)
Marital status
Married	36 (90.0)
Unmarried	3 (7.5)
Widowed	1 (2.5)
Type of cancer
gastric	15 (37.5)
Colon	15 (37.5)
Others	10 (25.0)

Abbreviation: SD, standard deviation.

^a n = 40.

Top 20 EOL Preferences Among the 12 Cards Selected

Table 2 shows the top 20 EOL preferences among the 12 cards selected. The most frequently selected preference was “I want my family to get along” (75.0%, n = 30), followed by “I don’t want to be a burden to my family” (67.5%, n = 27), “I want to maintain my dignity”(65.0%, n = 26), “I don’t want to suffer” (65.0%, n = 26), “I want to die without regret”(62.5%, n = 25), and “I want my finances to be in order” (60.0%, n = 24). Additionally, no patient selected 2 “special wishes” cards.

Table 2.

Frequency of Top 20 Items Among the 12 Cards Selected.

Items Listed on Card	n (%)
I want my family to get along	30 (75.0)
I don’t want to be a burden to my family	27 (67.5)
I want to maintain my dignity	26 (65.0)
I don’t want to suffer	26 (65.0)
I want to die without regret	25 (62.5)
I want my finances to be in order	24 (60.0)
I want to be free from anxiety	23 (57.5)
If I’m going to die anyway, I don’t want to be kept alive by machines	19 (47.5)
I want to be able to go outside	19 (47.5)
I want my family to respect my wishes	17 (42.5)
I do/don’t want to die at home	17 (42.5)
I want to be alert when I die	17 (42.5)
I want pleasant and quiet surroundings	16 (40.0)
I want to take care of unfinished business	16 (40.0)
I want to talk about what I have done in my life	13 (32.5)
I want to be kept clean and comfortable	13 (32.5)
I don’t want to die alone	13 (32.5)
Don’t cry while I am dying or around my body	13 (32.5)
I want to know what’s going to happen next	10 (25.0)
I’d like to travel before I die	10 (25.0)
I want my family to be emotionally prepared for my death	10 (25.0)
I want to listen to the music I like	10 (25.0)

Top 10 EOL Preferences Among the 3 Cards Selected

Table 3 presents the frequency of top 10 EOL preferences among the 3 most important cards selected. The most frequently selected preference was “I want my family to get along” (42.5%, n = 17) and “I don’t want to be a burden to my family” (42.5%, n = 17), followed by “I want to maintain my dignity” (37.5%, n = 15), “I want to die without regret” (32.5%, n = 13), “I want to be free from anxiety” (22.5%, n = 9), and “I don’t want to suffer” (20.0%, n = 8).

Table 3.

Frequency of Top 10 Items Among the 3 Cards Selected.

Items Listed on Card	n (%)
I want my family to get along	17 (42.5)
I don’t want to be a burden to my family	17 (42.5)
I want to maintain my dignity	15 (37.5)
I want to die without regret	13 (32.5)
I want to be free from anxiety	9 (22.5)
I don’t want to suffer	8 (20.0)
If I’m going to die anyway, I don’t want to be kept alive by machines	5 (12.5)
I want my family to respect my wishes	4 (10.0)
I want to know what’s going to happen next	4 (10.0)
Don’t cry while I am dying or around my body	3 (7.5)

Despite the small sample size, there were significant differences in gender, education level, and residence with regard to the 3 most important cards selected by the participants, but there were no significant differences in other demographic and clinical characteristics.

The distribution of 4 EOL needs is displayed in Table 4. Among the 3 most important cards, social needs were most frequently selected (36.7%, n = 44), followed by spiritual needs (35.8%, n = 43), physical needs (20.0%, n = 24), and financial needs (7.5%, n = 9).

Table 4.

Distribution of 4 EOL Needs Among the 3 Cards Selected.

Categories of EOL Needs	n (%)
Social needs	44 (36.7)
Spiritual needs	43 (35.8)
Physical needs	24 (20.0)
Financial needs	9 (7.5)
Total	120 (100.0)

Abbreviation: EOL, end of life.

Evaluation of HHCG

Table 5 displays the results of the evaluation of HHCG. Of 40 participants, 38 (95%) felt that it made sense to discuss EOL issues using HHCG and that their opinions were respected. Thirty-five (87.5%) participants felt that HHCG made it easier to discuss EOL issues and helped them express their preferences. Moreover, 35 (87.5%) participants shared that they would recommend HHCG to others, and 29 (72.5%) participants expressed the willingness to participate in Advance Directives.

Table 5.

Evaluation of HHCG.

Items Listed on HHCG Evaluation Form	n (%)
It makes sense to discuss EOL issues with HHCG	38 (95.0)
My opinions were respected	38 (95.0)
HHCG makes it easier to discuss EOL issues	35 (87.5)
I can say what I want to say with HHCG	35 (87.5)
I would recommend HHCG to others	35 (87.5)
I am willing to participate in advance directives	29 (72.5)

Abbreviations: EOL, end of life; HHCG, Heart to Heart Card Game.

Discussion

This study evaluated the EOL preferences among patients with cancer in China using the HHCG. The evaluation of HHCG revealed that more than 70% of the participants highly valued HHCG. This finding suggests that HHCG can be used as a communication tool to encourage EOL discussions between patients with cancer and health-care providers in China. To the best of our knowledge, this was the first study to explore EOL preferences among Chinese patients with cancer using the HHCG. A large proportion of participants selected social needs (“I want my family to get along” and “I don’t want to be a burden to my family”) and spiritual needs (“I want to maintain my dignity”) as most important EOL needs.

“I want my family to get along,” a want for family members to maintain harmonious relationships, is considered a core component of family functioning and has crucial impacts on family happiness and health in Chinese culture.¹⁹ Conversely, “I don’t want to be a burden to my family” expresses the desire to not pose a financial, care, and emotional burden on the family. “I want my family to get along” and “I don’t want to be a burden to my family” were both most frequently selected EOL preferences in this study. Consistent with past findings, this result highlights the importance of family in the EOL care for Chinese patients^20,21 since family support constitutes the major aspect of social support for patients in China.²² This family support is unique to the concept of filial piety in the Chinese culture that advocates the responsibility of mutual caring, loving, and giving among blood relations.²³ Influenced by this concept, patients at the EOL should be cared for by their family members and should not make EOL care decisions independently. This may, however, result in a loss of independence and autonomy among the patients, thus making them feel like a burden to their family. One study also found that the top 3 EOL preferences identified by Chinese Americans using the Go Wish Card Game were freedom from pain, not being a burden to family, and being with family.⁹ This finding further confirms the role of family at EOL for Chinese patients. Conversely, Delgado-Guay et al reported that the 2 most common EOL preferences identified by American patients with advanced cancer using the Go Wish Card Game were “to be at peace with God” and “to pray.”⁸ Consistent with this finding, a literature review regarding priorities for a good death in a mainly white population revealed that family was not rated as a high priority.²⁴ This may reflect cultural differences in the importance of family in the 2 cultures. Chinese bioethics emphasizes family and harmony, while Western bioethics emphasizes individualism and autonomy.¹⁸ Therefore, further research to explore a family-centered EOL care model in China is required.

Among the 12 cards selected, “I want to maintain my dignity” tied with “I don’t want to suffer” for the third place. Among the 3 cards selected, “I want to maintain my dignity” held the third place, but “I don’t want to suffer” dropped to the sixth place. This result shows that dignity at the EOL is more important when participants face limited choices. The need to maintain patient dignity at the EOL among terminally ill patients with cancer in China has also been confirmed in a qualitative study.²⁵ However, this finding was inconsistent with a previous study of Chinese Americans reporting that “freedom from pain” was ranked as the most frequently selected EOL preference, with maintaining dignity ranked as the fifth.⁹ This finding suggests that patient dignity in EOL care has not received enough attention in China. Dignity is a value-based concept greatly influenced by culture and is considered to be an attribute of a good death for terminally ill patients.²⁶ “Dying with dignity” has been described as a human right, respect, autonomy, independence, privacy, limited life-sustaining treatment, minimal symptom distress, meaningful relationships with others, and spiritual satisfaction.²⁷ However, family relationships are more important than individual rights in Chinese culture; thus, patients often lack sufficient autonomy and independence in EOL decision-making.¹⁸ Additionally, patient autonomy, independence, and privacy are highly respected in America; thus, Chinese Americans paid more attention to freedom from pain. The understanding of dignity at the EOL varies across cultures. Therefore, future research should aim to develop culturally appropriate interventions for supporting patient dignity at EOL among Chinese patients with cancer.

Religious needs were rated as one of the most important aspects of spiritual needs in the Western culture.^7,8 Although spiritual needs were rated as one of the most important needs in this study, few participants rated religious needs as important. This inconsistency may exist because most Chinese people follow no specific religion. Similarly, a survey of spiritual needs among Chinese patients with cancer revealed that religious needs were rated as least important.²⁸ Spiritual needs are the need to seek purpose and meaning in life and to acquire inner peace.²⁹ As per the results, “I want to maintain my dignity” was the most frequently selected spiritual need, followed by “I want to die without regret,” “I want to be free from anxiety,” “don't cry while I am dying or around my body,” “I want to talk about what I have done” and “I want to listen to the music I like.” We apologize for this error. Please change this sentence: As per the results, “I want to maintain my dignity” was the most frequently selected spiritual need, followed by “I want to die without regret,” “I want to be free from anxiety,” “don’t cry while I am dying or around my body,” “I want to talk about what I have done in my life” and “I want to listen to the music I like.” Consistent with findings of the studies of Taiwanese and Hong Kong patients, this finding highlights the importance of the spiritual needs to face death peacefully and maintain patient dignity among Chinese patients with cancer at the EOL.^30,31 Spiritual needs are associated with personal experiences and culture. The essence of Chinese culture has developed from Confucianism, Taoism, and Buddhism.³² These 3 philosophies are not regarded as religious beliefs but rather as a set of universal values for most Chinese. Confucianism emphasizes on relationships and responsibility between people,³³ while Taoism advocates maintaining harmony with nature and regards death as a natural process of life,³⁴ and Buddhism stresses on Samsara (wheel of life) and karma (cause and effect), which means that a person’s acts in the current life may affect their next life.³⁵ Influenced by these 3 philosophies, holding onto hope, facing death with peace, fulfilling personal responsibilities, accepting death as a natural process of life, connecting with others, and maintaining dignity are associated with spirituality for Chinese patients. Patients from different cultural backgrounds may have different spiritual needs. Fulfillment of spiritual needs is significantly associated with a better sense of well-being, better quality of life, higher patient satisfaction, and lower EOL costs.^36
-38 Thus, medical professionals should actively recognize the spiritual needs in EOL care and develop effective spiritual interventions appropriate for the Chinese culture.

Due to the cultural beliefs and moral concerns, EOL discussions in China are rare. However, a high proportion of participants highly valued HHCG in this study. This finding suggests that HHCG can be used as a communication tool to encourage EOL discussions between Chinese patients with cancer and health-care providers in China. Previous studies investigating EOL preferences among Chinese patients focused only on the preferences for life-sustaining treatment and hospice care.^39,40 However, HHCG emphasizes the importance of identifying patient’s preferences regarding EOL care and values pertinent to the Chinese culture. And HHCG encourages a more holistic view of the patient by focusing on a range of physical, spiritual, social, and financial needs. Moreover, no patient selected special wishes cards, which suggests that other content cards could meet the EOL needs of the participants.

Limitations

The small sample size poses as a limitation for this study, as it limits the scope for analysis and the extent to which the current findings can be generalized. Moreover, we did not evaluate EOL preferences of family and health-care providers, both of which play critical roles in EOL care for Chinese patients.

Conclusions

Our study suggests that HHCG can be used as a communication tool to encourage EOL discussions between Chinese patients with cancer and health-care providers in China. Chinese patients with cancer attach significant importance to their family and maintaining dignity at EOL. Future research could attempt to involve health-care providers and family members in HHCG to ensure that the patient’s preferences are understood and honored. We recommend health professionals to pay careful attention to family involvement and maintain patient dignity at EOL.

Footnotes

Acknowledgments

The authors wish to acknowledge the kind support provided by Sandy Chen Stokes and Shirley Pan from the Chinese American Coalition for Compassionate Care.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by the Project of Humanities and Social Sciences of the Ministry of Education, China [grant number 16YJAZH004, 2016].

ORCID iD

Tong Li

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