Special Section

Attuning to the Erratic End of Life: The Logic of Care in Hospice at Home

 

 

Anne-chie Wang

Academia Sinica
anne0806@gmail.com

 

Abstract

How do dying people receive good care at home in a highly institutionalized death context? The Ministry of Health and Welfare in Taiwan, for example, has promoted hospice home care and respecting patient autonomy to improve the quality of end-of-life experiences. However, this study finds that end-of-life care is not automatically personalized or empowering for patients. From the theoretical perspective of care practices, this study accentuates the importance of family carers’ invisible work in achieving these goals for patients. Drawing from in-depth interviews and twelve months of participant observation in a medical center in northern Taiwan, the study found that family caregivers are meticulously attuned to the patient’s condition to provide care, which includes rearranging the place, coordinating resources and other carers, and practicing care. This paper reveals that the practice of hospice home care does not depend merely on the patient’s autonomy but also on the family caregivers’ and medical team’s work, which is relatively invisible within the health insurance system.

 

Keywords

care practices, institutionalization of death, the logic of care, hospice palliative care, relational autonomy

 

Introduction: Dilemmas of Patient Autonomy in Hospice Home Care

Care is an essential theme in feminist technoscience that reveals the intersectionality of power relationships in everyday life (Mol 2008; Martin, Myers, and Viseu 2015; Lindén and Lydahl 2021). This study investigates what it means to practice good care in end-of-life situations. Biomedical discourse argues that patients’ quality of life can be improved by enhancing their autonomy, implying that patients should be able to make their own decisions rather than be subjected to the patriarchal rule of medical professionals. Globally, some trends promote patient autonomy in care, especially for end-of-life patients, because they are likely to occupy a marginal position within social relationships. Specifically, research has long described terminally ill patients’ social death, meaning people are treated as if they are dead (Glaser and Strauss 1965; Sudnow 1967).

In Taiwan, implementing hospice home care is a reasonable attempt to improve the end-of-life experiences of patients.1 Death at home has significant cultural implications related to local filial piety culture in Taiwanese society, as in other Asian countries (Long 2005; Stonington 2020). The ideal image of a good death in Taiwanese culture usually depicts the elderly aging and dying at home under the care of their children and grandchildren, which connotates the elders’ achievement of strong family relationships (Tang 2000). This ideal image implies the critical role of the cultural norms of intergenerational reciprocity in elder care (Lan 2002). However, in Taiwan, death and dying are increasingly institutionalized, as in North America and many European countries (Kaufman 2005; Timmermans 2005). According to national statistics, in 1994, nearly 60 percent of people died at home, and 30 percent died in the hospital (Ministry of Health and Welfare 1994). By 2019, 30 percent of people died at home, and 57 percent died in hospitals (Ministry of the Interior 2019). Dying is increasingly sequestered in institutions and managed by medical professionals (Timmermans 2005). As a result, it is becoming more difficult for Taiwanese people to die at home. Most patients have no choice but to die at the hospital, even if they want to die at home (Ueng et al. 2013).

The Taiwanese government advocates for hospice home care as the ideal situation to offer an alternative to institutionalized death and allow patients to choose to die at home. There are two main reasons for this approach. The first is to reduce government expenditures on national health insurance (Lo 2002; Hung et al. 2018).2 The Taiwanese government wants to minimize over-institutionalized death because of its tremendous cost to national health insurance resources (Chen, Chang, and Huang 2015). Second, the medical profession assumes that hospice home care can improve the quality of patients’ end-of-life experiences through holistic healthcare (Tang 2000; Ueng et al. 2013).

However, the number of people using hospice home care has grown more slowly than expected by the government. According to Ministry of Health and Welfare statistics, approximately twelve thousand people used hospice home services in 2019, much lower than the estimated value. The puzzle is, if home care is an ideal that the Taiwanese government and culture consider worth pursuing, why is the proportion of patients receiving end-of-life care at home relatively low? A common explanation in the medical profession is that patients and their families have low death literacy (Huang et al. 2017). The concept of death literacy comes from health literacy, which means that if people acquire correct end-of-life knowledge, they will choose more appropriate care methods (Noonan et al. 2016). However, the explanation of death literacy does not reveal the difficulties and dilemmas of care practices in hospice home care.

This phenomenon raises the following research question: How do dying people access good care at home in a highly institutionalized death context? How do family caregivers care for terminally ill patients at home, under the supervision of hospice care professionals? What are the consequences of the family caregivers’ caregiving actions? By investigating the practices of hospice home care, this study reveals that hospice home care might come at the cost of inequality intersecting with gender, class, or race/ethnicity. Yet hospice home care also raises suggestions for how the ideal good care practice could be possible in a socially justice way. Scrutinizing the gap between the medical framework and actual care practices helps us to investigate well-being beyond the individual as part of a more extensive cultural context (Silan, Chen, and Lai 2022).

Good care has been a fruitful feminist topic for decades (Gilligan 1982; Noddings 1984; Tronto 1993). A fundamental shift in the discussion is from defining good or ethical care to investigating how good care is provided (Mol, Moser, and Pols 2010). Annemarie Mol (2008) conceptualized the logic of choice and the logic of care to deepen the discussion of care practices. The two models have different views on how to achieve good care. According to the logic of choice, making a decision is the most critical activity. Patients choose their preferred healthcare models based on their value judgments. The logic of choice provides an illusion of control in the doctor-patient relationship.

In contrast, people who act according to the logic of care will focus not only on the moment of making a decision but also on meticulous and continuous care activities. Patients and medical staff repeatedly adjust their healthcare practices to target their bodies, technologies, and knowledge. Mol notes that the two logics are not necessarily superior or inferior and may coexist.

Mol (2008) states that caring is never easy, and choosing may give people a sense of security in maintaining control. However, many things in real life, including our bodies, cannot always be controlled (Jain and Stacey 2015). The only thing that can be guaranteed is that our lives end in death. So Mol advocates the characteristics of an active patient. Being active does not mean controlling everything; people actively participate in care but can also let go when they are out of control. The active patient also implies that people must be persistent and flexible during caregiving. Patients and medical professionals collaborate to share doctoring and collectively coordinate patients’ needs, equipment, and treatment methods. Treating one’s body well and maintaining flexibility in decision-making are positive behaviors that can differ from rational choices.

The case of hospice home care could extend the logic of care discussion to the temporal dimension. Usually, care takes a very long time; for example, caring for the elderly and people with chronic diseases can take decades. However, the case I am discussing is end-of-life care, where one can expect a definite endpoint, and the duration of care can be short, with rapid changes, mostly less than six months. The erratic character of death trajectories makes end-of-life care more complex, and medical staff and families often try to choreograph death trajectories (Kaufman 2005; Stonington 2020). The case of end-of-life care helps us further understand the characteristics of contemporary death care practices and how they are changing in response to various social and cultural factors such as technological mediation, secularization, and globalization (Dawdy and Kneese 2022).

Does patient choice ensure good care? From the perspective of feminist technoscience, good care is much more than making a choice. Mol, Moser, and Pols cast good care as “persistent tinkering in a world full of complex ambivalence and shifting tensions” (2010, 14). I argues that end-of-life care is based not merely on autonomous personal choices but on meticulous care practices. The power of individual choices should not be overemphasized. This study re-examines the problem of patient autonomy overshadowing the complexities of care practices. It reveals the intersectionality of gender, class, race/ethnicity, and age issues in end-of-life care.

 

Methods

To investigate the practice of end-of-life care, I did participant observation for twelve months in a palliative care ward in a medical center, Z Hospital (pseudonym). After obtaining approval from the Z Hospital research ethics committee, I conducted ethnography as a clinical researcher. I went to the palliative care ward thrice weekly for six to eight hours. While observing, I shadowed hospice care team members such as physicians, nurses, hospice volunteers, social workers, psychologists, and hospice chaplains in the ward. I also followed the hospice care team for home visits fifteen times. Most of the patients in Z Hospital have cancer rather than chronic illness. The rapidness of cancer’s illness trajectory influences the care practices people need to tackle problems quickly.

I interviewed twenty-one family caregivers and ten hospice care team members in-depth to probe their practice of caring for patients at home.3 Before the interview, I informed the participants of the research purpose and ensured the confidentiality of the research data. Most of the participants were recommended to me by palliative care team members, while I approached others myself. Among the participants, there were fifteen women and six men. About one-third of the participants were single. Thirteen family caregivers are the patient’s children, four are spouses, three are siblings, and one is a daughter-in-law. Most caregivers are on leave without pay, retired, or engaged in more flexible work. I conducted the interviews in the ward or the hospital lounge, according to the situation. The length of the interview varied from thirty minutes to two hours.

In addition, I also interviewed ten hospice care team members, including doctors, nurses, and hospice volunteers, who participated in hospice home services. Most of the interviewed members served in the hospice ward of Z Hospital, and the rest were medical staff recommended by the hospice ward team members. The interviews focused on their experience caring for hospice home patients and how they observed family members’ caregiving experiences. Most of the respondents I interviewed and observed worked in urban areas. Because the provision of health services varies with populations’ socioeconomic status, the experience of hospice home care in rural areas needs further exploration in future research.

After collecting all the field notes and interview recording transcripts, I did an abductive analysis to interrogate the meaning of the data (Timmermans and Tavory 2022). First, I found that the discussion of the difficulty of home care came up repeatedly. Then I coded how family carers and medical professionals solve problems of hospice home care. Second, I found a gap between the official discourse and what caregivers report happens. Specifically, the family carers experience a lot of problems. Based on these themes, this article analyzes how family carers assemble end-of-life care infrastructure and practice caring for their loved ones.

In this paper, I investigate family members’ care practices in hospice home care in Taiwan and the limitation of patient autonomy in the liberal framework. In the first section, I analyze the care scripts and social forces that push patients to adopt hospice home care, including the national health insurance’s socioeconomic factors and the hospital’s institutional logic. In the second section, I scrutinize how family carers assemble resources, organize a division of labor, and practice care attuned to the uncertainty of death.

 

Not Only Patient Autonomy: The Social Forces in Care at Home

Medical professionals advocate for hospice home care by constructing a set of cultural scripts that define “good care” at end of life. From a medical professional’s view, home is “the best place for caring” and “a place with dignity” for terminal patients with no acute syndrome. They believe patients who are receiving care at home have a greater sense of control than what the care practices in a hospital setting can offer.

A typical medical care script emphasizes that most patients want to go home for the rest of their lives and that patients can always get home care support from medical professionals (Ueng et al. 2013). For example, the Ministry of Health and Welfare and the Buddhist Lotus Hospice Care Foundation (2013) issued a brochure for the general public titled It Is Good to Go Home: About Hospice Home Care, presenting a typical good care script:

 

A-Fu, an indigenous person in east Taiwan, was hospitalized for gallbladder cancer. Due to the ups and downs of their terminal illness, A-Fu stays in the hospital for nearly three months. His family knows A-Fu wants to return home, but they are afraid to let him go home due to not knowing how to take care of him. Later, the hospice care team taught A-Fu’s wife and children nursing skills and cultivated their confidence in caring for patients. After all the efforts, A-Fu was finally able to go home. During their time at home, A-Fu was paid a home visit by the medical group once a week. In addition, the nurse often guides A-Fu's family on the phone to conduct special care for A-Fu step by step.

 

Many care scripts state that home is comfortable, familiar, and emotional, positioning “home as the best ward” and promising that hospice home care will support the family (Buddhist Lotus Hospice Care Foundation 2013). Medical professionals persuade terminally ill patients to choose hospice home care by framing this decision as an empowering choice. As Mol (2008) states, this framing process is a disciplining technique that requires much investment. From the medical professionals’ perspective, patients’ choice of hospice home care is based on self-determination.

There are broader social forces driving these families’ participation in hospice home care, however. Their assessment of what constitutes “good care” for terminally ill patients occurs within the context of broader society. In other words, patients and their families exercise “relational autonomy”—the consideration that persons are socially embedded and shaped by intersecting social identities such as gender, class, race, and ethnicity (Mackenzie and Stoljar 2000).

Most actors are motivated by the hospital’s administrative regulations rather than the patient’s will. Many family caregivers and patients do not express specific expectations, so they are pushed by the hospital to be discharged. Hospital organizations consider resource allocation and formulate hospitalization protocols and work schedules that optimize benefits (Kaufman 2005; Livne 2019). In Z Hospital, after the hospice team assesses that the patient’s symptoms are relatively stable, they will recommend hospice home care until the patient has acute symptoms.

Some family members followed the advice of the medical staff to take care of them at home. For example, when I talked to Meiyin and Yongze about taking their families home for care, they said, “We do not know much, so we respect the professional’s evaluation.” They feel that since they are working class with limited medical knowledge, it is best to trust the medical professional’s judgment. In addition, their financial situation is constrained, and since the cost of institutional care is close to their monthly salary, they decide to take care of family members at home. Further revealing class stratification in hospice care, working-class families may not have the economic capital to outsource caregiving or hire domestic care workers.

Medical professionals seldom explicitly state that they discharge patients in consideration of the hospital’s regulations instead of considering the patient’s best interest. Policies regulating the national health insurance system and medical institutions require that medical personnel limit the length of hospital stay for inpatients so that new patients waiting for beds can be admitted to the hospice ward as soon as possible (Huang et al. 2005).4

In other cases, hospital regulation conscripts patients or families to do care activities. Restrictions makes them want to go home for care. For example, one of the respondents, Dr. Xu, observed that some families chose hospice home care because the patient or family members want to follow Buddhist practices of praying for eight hours after a person has died and not touching the body. It is challenging to perform these rituals in the hospital, where the deceased patient is sent to the mortuary shortly after they die. Patients and their families cannot stay in the ward for too long because the hospice team needs to give the hospital bed resources to the next patient. Hospitals organize things in a way that keeps things moving and is unlikely to keep terminally ill patients long without medical care goals (Kaufman 2005). The logic of efficiency in hospital regulations conflicts with and overrides the logic of care that allows family members to accompany the deceased patient.

Only a small number of families voluntarily engage in hospice home care. Usually, these families have abundant financial resources, understand how to practice hospice home care, and are willing to support patients in home care. For instance, an old woman named Fangling, who was in her eighties, was diagnosed with colorectal cancer, and the treatment effect was not as good as expected. Her husband also suffered from cancer and received hospice home care for half a month before his death. He passed away peacefully at home. Her husband’s end-of-life experience affected her; she also wanted to die at home and receive hospice home care. Her children were also willing to support her. Fangling’s family had high economic and social capital to support her peaceful home care. Abundant resources are needed to support in-home care, and family caregivers must also have professional skills and knowledge to provide such care. With these resources, this group of family caregivers and patients believes that “home” can support end-of-life care and is a more comfortable place than a medical facility, which is only a place for temporary symptom control.

In the logic of choice, medical professionals provide medical facts and treatment options, allowing patients to decide based on their value orientation (Mol 2008). They expect patients to manage their care plan actively. However, from the perspective of the logic of care, facts are not given in advance but emerge within the context of power relations, such as the interests of medical professionals and the nation. These cases show that patients who adopted hospice home care were influenced by more than the logic of choice. Instead, care practices in hospice home care reflect the entwinement of individual preference, Taiwanese cultural beliefs, socioeconomic status, biomedical culture, and national health insurance expenditure calculations.

In the following section, I elaborate on how family carers practice care and what resources they need to support their choice of hospice home care.

 

Making Home Become a Caring Place

In the view of patient autonomy, the most prominent part of hospice home care is making patients return home. However, home does not automatically provide care. Intense labor is involved in care practice. Carers put much effort into managing resources, including transportation networks, home space, and care devices, to make the home suitable for care. People assemble different things in the care network to pursue a better life, linking labor, affection, and ethical politics (Puig de la Bellacasa 2017).

 

Assembling Resources

Family carers need to do a lot of work to achieve the medical professionals’ expectations about making the home more like a hospital. The physical space configuration within the house affects care practice. According to the design standards of medical institutions, the ideal care space is preferably flat, which is convenient for moving patients. According to medical and health care, the hospitable home team will educate or assist carers in improving the home care environment (Driessen, Borgstrom, and Cohn 2021; Exley and Allen 2007). For example, the hospice home nurses and clinic physicians I interviewed said they would observe home environments and suggest improvement directions. The interviewee Dr. Su revealed that many people thought hospice care only deals with tinkering with family relationships; however, the hospice care team also cares about the physical layout of the house. He said, “House is like hardware, home is like software, and home care needs to take care of both.” Some families have the resources to renovate the house, such as arranging handrails in the bedroom and adding non-slip mats to the bathroom. For instance, a family carer Yiwen, a retired executive manager in her fifties, did a lot of “pre-deployment” to take care of her terminally ill mother at home. After the hospice home care professional advised on the ideal caring environment, Yiwen reorganized the house into a barrier-free space where a wheelchair could smoothly go to every room.

Hospice home care raises the expectation and the standard of “good care.” Caregivers must purchase and prepare a lot of equipment and learn how to operate it. There are many standard care types of equipment, such as electric beds, bedpan chairs, wheelchairs, oxygen cylinders, sputum machines, blood pressure monitors, and blood oxygen machines. Family caregiving requires assembling various technological objects and care equipment according to the health education guidance of medical professionals.

Many family caregivers consider preparing the setting and making the home like a hospital ward challenging. For example, most family carers I interviewed told me about the complex process of arranging an electric bed for patients. Electric beds are standard equipment in most hospitals and can help patients with reduced mobility adjust their body posture. Electric beds are supposed to make care more convenient, but for ordinary families, electric beds are equipment that requires special assembly. An electric bed also takes up a lot of space, which many families do not have. Some research participants said that because their bedroom is not large enough, they plan to use a ready-made bed at home. Some people rent an electric bed from local organizations but may have to wait in line for a long time. Some patients may pass away before family carers assemble the equipment. Some clients’ financial situations prevent them from purchasing additional care supplies, and they will use ready-made equipment at home.

In addition, the patient will not automatically receive care from the medical product. The family members need to be proficient in using the specialized technology. For example, a carer named Liying demonstrated that she learned to adjust the height of the electric bed according to different nursing purposes. For example, when caring for her bedridden mother, she changed the bed to her waist height so she can take care of the mother without bending her waist too much. When her mother wants to get up from bed, Liying will lower the bed to the height of the wheelchair so that her mother can move into the wheelchair more smoothly. Assemblage resources are not just about purchasing products but actively engaging in caregiving. In the feminist technoscience theoretical position, technology and care are not antagonistic but incorporated (Mol 2008). These cases all show that “home” is either a natural place or a suitable place for care; it needs to be built through the efforts of family caregivers and requires professional skills.

 

Organizing the Division of Labor

Hospice home care requires skilled caregivers, who can be grouped into four categories, listed below in order of majority to minority. The first category is paid care workers hired by patients’ families. In the cases I interviewed, 70 percent of the interviewed families hired domestic migrant workers. In Taiwan, migrant workers from southeast Asia play essential roles in the privatized care market in the international transfer of caretaking (Parreñas 2000; Lan 2006). Family members or nurses train hired migrant workers to learn caring skills. Two interviewees mentioned that they discussed their willingness to go home for care with the domestic migrant worker before considering the need for a peaceful stay at home; the family members would only go home with confidence after the migrant worker agreed. The privileged Taiwanese family can hire migrant care workers to help with caregiving, while the less privileged family might do the carework themselves. In these ways, the privatized healthcare system reinforces inequality within class, gender, race, and ethnicity (England 2005).

The second category is for family caregivers to find channels to learn and develop caring skills. More than half of the family members mentioned that they would collect information about home hospice care or ask relatives and friends about their experiences. One of the more exceptional cases is Ping-Hao, a retired civil servant who was admitted to the Long-Term Care Institute of the University of Medicine to care more professionally for his father, who was terminally ill with pancreatic cancer. Ping-Hao’s case highlights that family caregivers know the difficulty of caring, so they actively seek standardized training methods to develop their specialized skills. The above two categories are closer to professional care, hiring workers with professional skills to assist or family caregivers seeking professional knowledge and training.

In the third category, there are also family caregivers who use their past care experience. Four interviewed family members had previous experience caring for terminally ill patients. They said that although the types of diseases differed, the needs of terminally ill patients were similar. Alternatively, two family members mentioned that caring for terminally ill patients reminded them of their experience caring for an infant, such as changing diapers and patting the back to make them burp after having a meal. These similar experiences allowed them to master the professional skills of nursing more smoothly.

The fourth category is family caregivers who leverage their social experience or work experience to provide care. Some family members have a medical or nursing background, have received professional training, and can quickly grasp the key points of patient care. For example, a hospice volunteer named Meixiang had nursing training. When caring for her terminal father, she quickly mastered the necessary skills. However, family members with a medical background are in the minority. Even with medical knowledge, becoming familiar with the specialized skills of caring for terminally ill patients still takes time.

Besides family carers, domestic workers, and medical professionals, the hospice volunteering group is vital for hospice home care. In the early 1960s, in the development of palliative care in the United Kingdom, hospice volunteers were essential care workers outside the medical profession, helping to accompany patients and their families (Field and Johnson 1992; Morris et al. 2013). After introducing the hospice care system in Taiwan in the 1990s, hospitals also recruited and trained hospice volunteers (Li 1997). Hospice volunteers accompany patients on psychological and spiritual levels and provide some physical care. In contrast with volunteers in patient groups, which mainly empower patients and help them recover, such as those in breast cancer recovery (Klawiter 2004), hospice volunteers require training in comfort care and emotional companionship skills. Volunteers can also act as a communication bridge between the patient’s family and the medical team. Some hospice volunteers I interviewed said they had paid home visits to patients to comfort them and their family members several times. Sometimes they also support family care to do some complex tasks. For instance, they help to bathe patients because it is a challenging task for most family members.

 

Practicing Professional Care at Home

Lay carers also face challenges in trying to provide professional-level comfort care at home. Some caregiving activities may seem ordinary but can become more complex at home. Bathing is especially challenging, as it requires people and technological assistance. Many family members said it was challenging to bathe patients at home because most terminally ill patients are too fragile to move. For example, informer Shiwei recounted that his mother had a broken bone, and it was difficult for her to walk without assistance. Shiwei showed me the skill he had learned for bathing his mother. First, he would squat, let his mother hold on to his shoulders, and quickly wash her body while she could stand for a few minutes. He observed that the more relaxed the mother was, the easier she was to clean. When his mother feels nervous, she exhausts herself quickly and cannot stand independently. In another example, Zhenyi takes care of her ninety-year-old father, who has pancreatic cancer. She places him on a commode chair and then pushes him to the bathroom for a shower. Her dad was a thin man, who weighed about forty kilograms, but Zhenyi, who is in her sixties, still finds it hard to move her dad quickly. Zhenyi said it takes more than an hour to help her father take a bath every time, and she sweats profusely doing it, so most of the time, she gives him a sponge bath in bed. Some family carers will ask long-term care personnel to provide home bathing services to support them and make up for their lack of specialized skills. In the logic of choice, patients are free citizens who can abide by their rights and obligations and control their bodies in a liberal framework. But the natural body is often difficult to control and predict, especially the body with disease and illness (Jain and Stacey 2015). The logic of care emphasizes respecting one’s body and adjusting the way of care at any time. In the case of hospice home care, the family carers adapt to the patient’s condition to care rather than control it.

In contrast to home, hospitals have more human resources and special care equipment. For example, the hospice ward of Z Hospital provides patients with a weekly bathing service. One or two hospice volunteers, a nurse, and one or two family members attend the bath. The bathroom has a professional bathing machine that can elevate patients easily and allow patients to lie down with a shower or a tub bath. The bathing case shows that the lack of technical assistance and sufficient human resources at home makes the care process more laborious.

For lay carers, it is hard to control the uncertainty of death and the erratic character of the disease. Observing signs of impending death is essential for hospice care professionals because they must prepare for a patient’s death. Usually, professionals observe many signs to foresee the death trajectory (e.g., lower blood pressure, decreased urine output, and change in breathing pattern). Medical professionals make health education leaflets to teach carers to identify the main death signs. However, for most laypersons, predicting survival and dealing with symptoms of impending death is challenging and complicated to learn because it requires medical expertise and experience. Many respondents said, “I keep observing all day, but I do not know whether those signs are normal or abnormal.” Carers often feel uncertain about their observation. For example, the health education leaflet shows a critical sign of approaching death called “death rattle,” which is a kind of sound that causes by the secretions accumulating in the throat and upper chest. The median duration between the onset of death rattle and death is about eleven to twenty-eight hours (Lokker et al. 2014). Though the sign of death rattle is vital for a family carer to predict the patient’s survival time and prepare for death, the rattle is easily confused with coughing with phlegm. In some situations, carers fail to identify the death of signs, and patients pass away. The confusion could make carers deeply distressed due to not having time to say goodbye to the patient. As the technology of prognosis advances, the expectation of deathwatch is also enhanced. Medical professionals expect lay carers to observe death signs to accompany the dying patient vigilantly, which is difficult given the erratic character of dying.

Another laborious work is handling complex symptoms like massive bleeding, cancer pain, and breathing difficulties. When patients are not feeling well, families must decide whether to treat the symptoms themselves or send the patient to an emergency room. Some carers felt depressed and guilty about being unable to control their family members’ symptoms. For the layperson, the care practice is complex and emotion-laden. The logic of choice might come with regret when people think they have made the wrong choice.

Though many medical studies emphasize that the patient’s choice of the preferred place of death is critical, the time and place of death are full of uncertainty and contingency that make it hard to guarantee that the patient’s choices will be honored. In some cases, although some patients choose in advance to die at home, eventually, they die in the hospital. For example, when visiting the elderly woman named Fangling, who suffered from vomiting blood at home, the hospice home nurse determined that Fangling needed to go to the hospital and would likely die there. Indeed, Fangling died in the hospital. Although her family and the nurse made many efforts to help her feel comfortable at home, controlling severe bleeding at home is challenging because of the lack of advanced medical devices. They felt pity and guilty for not fulfilling Fangling’s wish to die at home. A hospice home nurse told me she receives about a hundred cases yearly, and less than one-third die at home. These cases demonstrate that although some terminal patients choose to be cared for at home, they may not be able to fulfill their wishes because of the uncertainty at the end of life. As Mol (2008) suggests, care will spontaneously go on and on till the last day of life, and we need to adjust care practices according to the situation every moment.

 

Discussion and Conclusion

In this study, I want to emphasize that care at home is not merely an autonomous personal choice; it is an unsettling care practice that needs to be supported by carers' efforts. Hospice advocators build narratives about how to care for the terminally ill to shape the cultural script of a good death. The cultural script emphasizes the importance of patient autonomy, suggesting that terminally ill patients can achieve a good death through advanced care planning. Cultural scripts reinforce the idealized culturally appropriate death by caring for the families of the terminally ill at home with the help of hospice expertise to alleviate pain and distress. Moreover, the medical professional emphasized the logic of choice to make the hospice care more certain. However, patients are not guaranteed the same care outlined in their chosen advanced healthcare directive. The idealized death promoted by professionals raises the expectation of “good care” and makes laypeople face daunting challenges to caregiving at home.

Home death is an explicit goal of contemporary institutional medicine in Taiwan. Government and professionals attempt to manipulate cultural preference and practices, providing an illusion of control in hospice home care. This study stresses that getting total control of end-of-life care is impossible. People need to attune to the situation to change their care practices. Therefore, I suggest more specific hospice home care should be promoted. It is essential to scrutinize the patients’ social position to give people individualized care rather than using a homogenous category of “end-of-life patient.”

This study focuses on family carers’ care practices for end-of-life patients at home. The standpoint of feminist technoscience helps us to scrutinize the shady side of “care,” which is full of undervalued invisible work and heartbreaking affection. The medicalization of death raises the standard of care at the end of life that the family carers need to meticulously make the home a caring place, practice professional care, and coordinate caring procedures. Family caregivers often have to adopt professional care practices, such as using complex technical machines, completing high-skill care tasks, and anticipating prognostication of unpredictable illnesses. Therefore, recognizing the contributions of laypeople who engage in professional-level work to maintain the patient’s end-of-life quality at home is essential.

This study contributes to the literature in four ways. It begins by highlighting the various invisible tasks in hospice care to ensure a good death. Second, it reveals the discrepancy between hospice care’s aim and reality. If we emphasize patients’ choice of end-of-life care too much, we risk ignoring the complexity and uncertainty of care practice and the broader social contexts in which it takes place. Third, the case of hospice home care enriches our understanding of the temporal dimension within the logic of care, shedding light on how family caregivers and medical teams navigate the evolving dynamics to orchestrate death trajectories. Lastly, the study reveals the multiple implications of “home” in end-of-life care. The hospice care network emphasizes that the home is the most appropriate place to care for terminal patients because of the social significance of home and family. Nevertheless, it overlooks care related to social relationships and physical locations that might generate or fail to generate care.

 

Acknowledgments

I want to extend my sincere appreciation to the respondents for their valuable time and thoughtful insights. My heartfelt thanks go to the reviewers and editors for their invaluable feedback, which significantly enhanced the quality of the manuscript. Special recognition is owed to Professors Caitlin D. Wylie and Coleen M. Carrigan for their dedicated efforts in organizing the special issue and facilitating the writing workshop. I am deeply grateful to Professor Chia-ling Wu for her insightful feedback and unwavering support. Lastly, I would like to acknowledge the invaluable assistance provided by the writing groups throughout my Ph.D. journey.

Notes

1 As an imported framework of care practices from Europe and North America, hospice care redefined the concept of culturally appropriate deaths in Taiwan. In the 1990s, the hospice care profession was established in Taiwan by a group of medical professionals trained in the UK or the US (Lai and Su 1997). The hospice care network gradually established norms, cultural cognition, and regulations regarding what constitutes a good death and how it should be achieved.

 

2 The national health insurance system and regulations create advocacy for end-of-life home care. In Taiwan, national health insurance was first established in 1996. Taiwan’s national health insurance coverage rate is almost 99 percent (Wu, Majeed, and Kuo 2010). To reduce the national health insurance expenditure on ineffective curative medical treatment for end-of-life patients, the Taiwanese government tried to promote hospice care in 1996 (Chao 2000). Palliative care has been gradually added to national health insurance coverage. In 1996 the National Health Insurance Bureau included hospice home care in a health insurance trial plan. After this pilot program gradually stabilized, in 2006, hospice home care and in-hospital hospice care were officially included in the national health insurance benefit package.

 

3 The names of interviewees and institutions I mention are all pseudonymized.

 

4 The government strictly audits cases of patients who stay longer than thirty days in the hospice ward. Those patients who do not meet the standards of in-patient care will lose health insurance benefits. These regulations show that the state tightly controls expenditure on hospice in-patient care. This policy also drives medical staff to encourage terminal patients without acute symptoms to go to home care to limit their hospice stay to less than thirty days.

 

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Author Bio

Anne-chie Wang is currently a postdoctoral research associate at Academia Sinica, Institute of Sociology. Her research focuses on the sociology of health and illness, science and technology studies, death and dying, and caring practices.