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Palliative Care for Older Adults Hospitalized for Stroke From the Informal Caregivers' Perspectives

A Qualitative Study

Su, Jing Jing PhD, RN; Lin, Rose S. Y. RN; Paguio, Jenniffer PhD, RN; Leung, Angela Y. M. PhD, RN; Molassiotis, Alex PhD, RN

Author Information
The Journal of Cardiovascular Nursing: April 29, 2022 - Volume - Issue - 10.1097/JCN.0000000000000923
doi: 10.1097/JCN.0000000000000923
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Abstract

Stroke refers to the interruption of cerebral tissue perfusion, leading to brain damage, a common and life-threatening condition.1,2 Stroke is an acute condition with a profound progression of functional deterioration (eg, paralysis, sensory impairment, aphasia), emotional disturbance (ie, agitation), social isolation, reduced quality of life, and death.3 Each year, approximately 15 million people worldwide have a stroke,4 and up to 36% of patients will die within 1 year and 67% will die within 5 years after an acute stroke.5 Adding to these grim statistics is the fact that people who die after stroke seldom use palliative care (PC), and their care obligation rests predominantly with health professionals in general medicine, rehabilitation, primary care, and caregivers.6,7

International guidelines have recognized the need to integrate PC for patients with stroke regardless of prognosis.6,8 Evidence suggests that patients dying after stroke have unmet needs, experience extensive symptom burden and poor mental health, and have not been provided with adequate information.9 Palliative care uses patient- and family-centered approaches to facilitate communication, shared decision making, advance care planning, and holistic care.6,8 There is limited evidence on stroke patients' and caregivers' preferences for PC and the need for support. An unsure prognosis, the uncertainty of the dying trajectory, and the wish for cure and life prolongation often delay recognition of these situations until it is too late.8,9

Few researchers have explored the PC perspectives of the stroke population. Authors of a qualitative study examined the views of PC among patients with stroke and their family members in the United Kingdom,10 which highlighted the importance of ongoing communication with honest and straightforward information toward a peaceful and dignified death. Another qualitative project in the Netherlands also revealed uncertainty toward stroke and expressed the need for communication and information support from healthcare professionals.11 Stroke survivors and caregivers in Scotland shared grief and struggling on facing death and expressed a negative view of the term PC for its connotation with imminent death.12 Authors of another study interviewed surrogate decision-makers regarding their perspectives on stroke prognosis communication and reported a mixed feeling of anxiety and understanding toward the uncertainty.13

However, these studies were conducted in high-level healthcare systems with extensive experience in providing PC14 and recruited less severe patients who could communicate their perspectives and experiences.15 This may limit the representativeness of study findings to Asia, including China, where discussing death remains taboo.16 In China, nearly 2 million patients die of stroke annually, contributing to one-third of stroke-related global deaths.17,18 Stroke patients' access to PC is limited that discussions of death remain taboo for the lack of public education and services initiatives.8,16 Older adults hospitalized with severe stroke are often unable to express their perspectives, and their views on PC remain unheard.16 As such, caregivers (ie, family members, friends, hired caregivers) become the ideal informants/advocates, because they may process the best knowledge and understanding of the patient.7,19,20 Therefore, this study aims to explore the perspectives of primary caregivers in providing PC for Chinese patients with stroke.

Method

Design and Setting

This study used a descriptive qualitative design involving individual, semistructured interviews. Qualitative descriptive method is suitable when little is known about a phenomenon and enables an in-depth exploration of participants' lived experiences of PC for patients with stroke in the hospital.21 Presentation of the study has followed the Consolidated Criteria for Reporting Qualitative Research guidelines.22 The Consolidated Criteria for Reporting Qualitative Research checklist guided researchers to report important aspects of the study methods, research team, context of the study, analysis, and findings to enhance transparency and theoretical possibility to duplicate the study.

Setting and Population

The study was conducted in a geriatric unit of a major hospital in Guangdong, China. Caregivers who had cared for a patient with stroke for at least 1 month and provided full-time (>30 h/wk) bedside care19 were eligible to participate. For caregivers to be eligible, they should also care for patients 65 years or older, with moderate to high levels of dependency (Barthel index ≤ 59),23,24 and having had a severe stroke (experienced an acute and life-threatening stroke according to physicians' medical text note). Participants were excluded if they were unable to converse in Mandarin or without giving full-time bedside care. The sample size determination followed the data saturation principle and was attained with the 15th interview and confirmed with 2 additional interviews.25 Together, 17 caregivers participated in this study.

Ethical Considerations

Ethical approval was attained from the Nanfang College of Sun Yat-sen University (HNS/REF/17049), and permission was obtained from the study hospital. Participants were given details of the study and informed that they could withdraw at any time without giving any reason. Written informed consent was obtained before data collection. The interviewer has extensive experiences in qualitative interviewing and providing emotional support to avoid mental crisis in recalling sad experiences. Caregivers were asked about their feelings upon completion of the interview to evaluate whether further assistance was needed.

Data Collection Procedures

Participants were recruited through purposive sampling. Stroke caregivers were approached and provided with an information sheet that explained the research process after reviewing the medical record of their care recipient (patients with stroke). Written informed consent was obtained. A sociodemographic questionnaire was adopted to obtain the participants' profiles, including age, sex, education, marital status, and duration of care for patients with stroke. Their care recipients' characteristics of age, sex, education level, marital status, comorbidities, the activities of daily living assessed by the Barthel index,23 skin injury assessed by the Braden Scale,26 and fall risk assessed by Morse Scale27 were also collected. Individual, in-depth, semistructured interviews were conducted. An interview guide with probes was developed to guide the interviews, covering the physical, emotional, and spiritual aspects as defined by the World Health Organization (Table 1).28 The interviewer was female and a doctorally prepared nurse with extensive experiences in stroke care and qualitative interviewing. Interviews were conducted in Mandarin in a private room in the hospital and lasted 30 to 60 minutes. A hospital nurse was assigned to check on the patient during the interview. A definition of PC was provided to participants who were unaware of this term that PC is an approach to improve the quality of life for patients and their families who are having a life-threatening illness, covering physical, psychosocial, or spiritual aspects.28 The interviews were audio-recorded with the participants' consent. Field and observation notes were taken throughout the interview sessions. The transcripts were sent to the participants for confirmation of their accuracy. Participants' identity information was protected by assigning a code number of this study.

TABLE 1 - Semistructured Interview Guide
• Please share your perspectives of palliative care? (How do you describe/define it in your own words?)
• How do you think palliative care should be provided to your patient? What are the key areas? Why are these essential? Can you give an example? What happened to the patient after you or someone you know provided palliative care?
• How would you communicate with your patient to provide good palliative care? What would you do to make the communication effective? How does your patient communicate with you? What helps you to understand them?
• How would you take care of your patients' psychological well-being to provide good palliative care? Please think of a time when your patient had negative emotions. How did you help them feel better?
• How do you instill hope and a positive outlook in life?
• How do you provide spiritual care? What do you think of your patient's perspectives towards death?
• What would be your suggestions to improve the provision of palliative care?
• How are you feeling now (at the end of the interview)?

Data Analysis

Data were analyzed by thematic analysis29 and organized by NVivo. The audio recordings were transcribed verbatim in Chinese and reviewed for accuracy against the original audio recordings and field notes. The transcripts were then translated into English by 2 researchers fluent in Mandarin and English. The 2 researchers independently read and reread the transcripts and made notes to identify the initial codes.21 Consensus for the generated codes was achieved through ongoing discussion among the researchers. The codes were applied to 4 randomly selected transcripts to allow an iterative process of refining the codes and developing a coding frame in both languages. Codes with similar meanings and those that were conceptually related were grouped to form subthemes. Through an iterative inductive and deductive approach in grouping the subthemes, the main themes emerged.

The Lincoln and Guba framework was used to ensure trustworthiness regarding dependability, credibility, confirmability, and transferability.30 The same questions in the interview guide were asked of all participants and promoted dependability. The participants were purposively selected from primary caregivers of patients with stroke who were considered to have in-depth knowledge about stroke patients' PC needs to ensure credibility. Credibility was also confirmed through appropriate curation of data from the recordings and field notes, accompanied by a thorough quality check before coding began. All researchers were involved in coding, and group discussions were used to maximize the accuracy of data analysis. Confirmability of the findings was ensured by sending the transcript to participants for accuracy check and using participants' verbatim quotes to support the results. Researchers used reflective discussion that critically considered their personal biases as researchers and reflected on the research procedures. A thick description of the findings may enhance generalizability to other settings or groups.31

Results

Characteristics of the 17 participants and patients they cared for are shown in Table 2. The caregivers were adults with a mean (SD) age of 51.23 (4.31) years and predominantly female (88%), had primary to secondary level of education, and provided 1 to 72 months of caregiving (average, 19.35 months). The stroke patients had a Braden score of 11.06 (2.79), a Morse score of 53.52 (8.43), and a Barthel index of 12.19 (12.23), indicating high risk of skin injury and fall, and high dependence level. “Promoting comfort” stands at the core of PC and was operationalized by “meeting physical care needs,” “ensuring communication,” “providing psychoemotional care,” “providing cognitive stimulation,” and “avoiding discussion of death and dying.” The thematic diagram is presented in the Figure. More illustrative quotes were provided in Table 3.

TABLE 2 - Characteristics of Interviewees and Patients (N = 17)
No. Caregivers Patients
Age, y Sex Education Level Caregiving Period Age, y Sex Dementia Braden Score Morse Score Barthel Index
1 50 Female Secondary 1 mo 89 Female No 12 48 5
2 50 Female Secondary 1 mo 91 Male No 12 45 5
3 53 Female Secondary 12 mo 91 Female No 12 48 5
4 56 Female Secondary 4 mo 80 Fmale No 9 44 5
5 53 Female Secondary 24 mo 88 Female No 12 52 15
6 50 Female Secondary 12 mo 83 Male No 19 53 55
7 52 Female Secondary 14 mo 89 Female No 12 67 15
8 45 Female Secondary 19 mo 94 Male Yes 12 66 10
9 49 Female Primary 72 mo 90 Male Yes 6 97 0
10 51 Female Primary 24 mo 90 Female Yes 8 45 5
11 55 Female Primary 36 mo 88 Male Yes 8 45 5
12 55 Female Secondary 19 mo 94 Male No 12 45 15
13 54 Female Secondary 48 mo 84 Male Yes 11 45 5
14 58 Female Secondary 16 mo 88 Male Yes 12 50 15
15 40 Female Primary 15 mo 89 Male No 12 56 10
16 48 Female Secondary 17 mo 89 Male No 10 55 15
17 52 Male Primary 1 mo 93 Male Yes 9 57 15

F1
FIGURE:
Caregivers' perspectives of palliative care for patients with stroke.
TABLE 3 - Additional Quotations to Support the Themes
Theme Illustrative Quotations
Meeting physiological care needs “If your hygiene care was poor, he would have bedsores. If you didn't pay attention to the diet, he would have diarrhea. PC or not, I do not know. But if you done well, he understood you. Otherwise, no.”
“She has unstable blood pressure. I check her blood pressure regularly. Her blood pressure drops whenever I change her position to sit on the wheelchair. If the blood pressure is too high or too low, we don't immediately leave. When this happens, I reposition her on bed and provide oxygen support, then, she would be stable.”
Ensuring communication “I would do things while observing his reaction. Like when I am feeding him, I would watch his facial expressions, whether he liked the food or not, and if he wanted more or finished. You have to be observant and sensitive to his body language.”
Avoiding discussions on death and dying “When you give blessings for longevity, he would be happy. It would be harsh to mention it (death). When the family finished the visit, they just left. No one knows when it would be the last visit, and no one talks about it.”
“Hush. No one dared to mention this, he is still there, isn't it? Mentioning this is like cursing (whisper).”

Promoting Comfort

Few participants were aware of PC as a concept per se. However, they regarded providing and ensuring comfort as a core goal and the basis of PC for stroke patients with high care needs. The caregivers described their ability to make a difference in their patients' lives through proving comfort based on their understanding of the patients' condition and needs. A caregiver captured promoting comfort as a core concept of PC as follows:

It's trying your best to make the patient comfortable. I give her water every hour, and carry her to pee every hour. I feed her on a regular schedule. She eats well. If there was no bedsore, she would be comfortable. Those things are under my control and I can make a difference.

Most of the participants were unaware of the term PC that they did not focus on its concepts and, instead, focused on extensive day-to-day care to make the patients comfortable. One stated:

I haven't heard of it. I do not think too much (of it). You need to find ways to make them comfortable in daily life. They cannot talk, if you do not know how to make them comfortable, how do you care?

Few participants expressed uncertainty on whether this term is applicable for patients with stroke because of the unsure prognosis. A caregiver felt “bed-ridden,” “high care demand,” or “people with communication barriers” were more appropriate terms, whereas PC may be more suitable for cancer patients with a shorter life expectancy:

I've heard of it when caring for cancer patients. I think the stroke patients can be called care needy, bed-ridden, or with speech difficulties because you cannot tell the progress of their condition.

Meeting Physiological Care Needs

Participants emphasized addressing the physiological care needs as the focus of PC and determines the well-being and prognosis of older adults with stroke. The physical care for patients with stroke was considered heavy and demanding in terms of caring for activities of daily living (ie, bathing, toileting, dressing, feeding, and transferring) and any related medical conditions. To ensure physical comfort and safety of their patients, the caregivers highlighted performing skin care, maintaining fall precautions, and providing good nutritional support. They shared:

Every morning, I help her in getting up, taking a shower, feeding, and everything else. I also change her into clean clothes…. For women, the perineum should be cleaned to avoid infection. Anyway, I mean hygiene care must be done well.

To adequately address the physical care needs of their patients, participants shared the importance of anticipating physiologic needs. This includes establishing a routine that determines the right time for feeding, toileting, and bathing to provide good physical care to patients who cannot willfully express themselves. Anticipating physiologic needs implies a mastery of their patients' functioning that enables caregivers to provide care even before untoward consequences occur such as pain, hunger, dehydration, or injury. A participant captured this aspect of physical care:

I have a good understanding of his bodily rhythm. I can anticipate the time for toileting, drinking, or eating fruits. You need to understand the body. I give him the proper amount of water to avoid dehydration.

Participants also highlighted the need for seeking medical assistance from healthcare professionals when patients experienced extensive physical symptoms and are at an increasing risk of death. An important aspect of caregiving is to provide close supervision to detect urgent situations where medical care should be sought. A participant shared:

She received first aid many times, caught mainly by me. When I gave skin care, I observed her blood vessels. I knew I need to call emergency care and check her consciousness.

The participants also shared varied strategies to prevent urgent medical care needs. These included accompanying the patients for checkups or therapies, assisting in tube care, and offering appropriate nutrition to stabilize blood glucose. A caregiver shared:

I pay special attention to his tube. I need to protect the tube when he is agitated or transferring.

Ensuring Communication

Caregivers acknowledged the significant communication challenges among patients who live with language difficulties due to long-term effects of a stroke or who have dementia. They elaborated on adopting various communication approaches to deliver effective PC to their patients, including verbal and nonverbal communication techniques. Participants shared how initiating one-sided verbal communication is essential for explaining caregiving activities to secure consent and cooperation. One participant explained:

Whatever you do for him, you need to tell him ahead, so he cooperates with you. If not, he may use all his bodily strength to go against you.

Apart from task-related communication, some participants talked to their patients to offer comfort, encouragement, and express of caring. Participants shared various scenarios where they used verbal communication to deliver PC, such as when patients experienced pain:

I comfort her by talking to her whenever I saw her in pain. “Gg (nickname of the patient), it is OK, you are safe, the doctors and nurses are excellent, you will be fine after taking medicine.”

Participants shared the importance of observing body language by being sensitive to and aware of patients' nonverbal clues, such as facial expression, touch, and gaze. The participants affirmed how they use the patient's body language as their main communication channel. They shared:

When she is uncomfortable. She would sigh or make the sound of “mm-hmm-hmm.” I needed to check.

Participants described appropriate touching as an essential comforting method to communicate PC and useful when patients were nervous or uncomfortable. Stroke patients' painful experiences blunted their responses to the environment and people. Touching is considered as an efficient way to reconnect with them and check their condition (ie, temperature, shaking):

Sometimes his body became stiff, and his facial expression looked painful. I would touch his face and say, relax, relax. Then he was less nervous. Touching helped to reduce discomfort.

Participants who cared for patients with stroke who also had dementia shared the use of touch to address the symptoms (ie, behavioral and psychological symptom, or shaking). During these instances, they used touch to help patients relax.

When her tremors set in, I would touch her face and hold her hands. Somehow, touching helped her to relax and to stop the shaking.

Providing Psychoemotional Care

Caregivers described that patients with stroke gradually lose control over their own body and are unable to satisfy personal wishes and needs, and thus, they would become unhappy and emotional. They shared using various psychoemotional care strategies, including humor and showing empathy to comfort patients' negative emotions such as feelings of irritability, confusion, anger, and home sickness.

Using Humor

Participants repeatedly mentioned the use of humor by referring to the current status of their patients experiencing a “second childhood” given their childlike behaviors. As described by the participants, the surfacing of childhood behaviors was a consequence of aging or illness-related cognitive impairment. These age- or illness-related changes contribute to easy irritation and abrupt negative emotional responses (easy to anger). Therefore, interacting with patients with humor and being cheerful were perceived as beneficial to arouse positive emotions. Participants shared:

I would say, “Wow! You look so good! How come you are so handsome? You have a tall nose.” I would funnily compliment him so that he would be happy (smile).

When she is sad or confused, we played hand clap and moved legs with her. I learned that if you do not cheer her up, she would refuse to eat or communicate.

Showing Empathy

Participants shared that patients sometimes are in a bad mood, when they may not appreciate their current life and caregiving efforts. The caregivers recognized the need for understanding by offering time and space to calm down and maintain neutrality toward their patients instead of absorbing the negative emotions and reacting to them.

If she was mad, she used all her strength to go against you, like refused to change position. Its aging and disease (made her emotional). You cannot be angry at her. You need to assure her that it's OK.

Participants described different scenarios where stroke patients with dementia were emotional, became agitated or aggressive, or made false allegations of abuse when delusional. Showing empathy means recognizing the unintentional nature of this behavior, to forgive and tolerate the emotions. Participants elaborated that it was difficult at that time when this happens, but after successfully coping with the situation, it is important for caregivers to forgive and be tolerant as they continue their caregiving routines.

One time she had a delusion. She yelled and shouted at me, “you beat me, even my parents never beat me, how dare you to beat me.” I asked her “how?” She said, “you slapped me.” You tied my hands using rice straw. She insisted on calling the police. That's difficult. But if she were conscious, she would not say this. I took her for a walk, tried to satisfy her demands, and let her release emotions.

Providing Cognitive Stimulation

Caregivers shared the importance of cognitive stimulation to maintain a reaction to others and the environment as the patients usually become silent and indifferent as their condition progresses. Caregivers shared different scenarios where they talked about activities or people memorable to the patients.

Many oldest old patients, they were conscious and may be talkative, but gradually, they became silent and indifferent. They just do not talk and react any more. It just happen that way, maybe we should talk about things they liked and stimulate their reactions.

Participants repeatedly mentioned that patients were more active and alert when interacting with family members: they felt happy during family visits and felt down upon departure. They shared that praising the family's love and mentioning family memories to stimulate a patient's cognition are important.

When her children called her mummy or granny. You could see tears in her eyes. I would mention to her about family members' caring towards her. She listened and responded using her eye gaze.

A few caregivers who cared for patients for years and knew the patient's personal history mentioned practicing reminiscence, recalling memories of the past, and caring for the patients. One shared using an old song to arouse memory of their patient's youth:

I would sing the song Dongfanghong for him. He came from the North. That's his favorite song when he was young. The song brought the memory of his youth, hometown, and people.

Avoiding Discussions on Death and Dying

When exploring the perspectives of their patients toward death, caregivers shared some hesitation in sharing their views. Some considered perspectives toward death as very personal and sensitive, hard for caregivers to have an opinion and understanding:

Hard to say. Everyone has their expectations and wishes toward living and dying (looked around to ensure no other people were around). He cannot express, so we do not know, and we will never know.

Participants unanimously described that they would avoid mentioning/hinting of “death” to prevent stimulating patients' death fear and to protect the patients' feelings. Some participants shared the positive reactions from the patients when receiving longevity wishes and family visits. Some recalled patients' negative emotions (eg, sadness) when departing with their family members in silence without farewell. Caregivers stated:

Ugh, one thing is, when you take care of a patient like this, you do not say anything cruel. Like, there was a patient dead in our unit, I never mention anything to him. If I say things like this, he would be sad. You must not say this thing (death). You only say things that are happy.

Some caregivers expressed a lack of a system to support alternatives or advanced care planning, making a discussion of death and the meaning of a patient's life pointless.

The person is like this already, pointless to explore life's meaning. Other countries allow euthanasia. Not here. He cannot die, jump off the building or into the ocean, impossible. He has no option.

Discussion

This qualitative study confirms and adds depth to improve PC for patients with stroke by promoting comfort, meeting physical care needs, ensuring communication, and providing psychoemotional care. Two additional domains emerged, critical to Chinese patients with stroke: providing cognitive stimulation and avoiding discussions on death and dying. Findings indicated that the physical symptom burden and psychological distress are prominent among patients dying from stroke. They have extensive unmet needs considering the silence around a complex but essential topic: death. It is crucial to improve recognition and provision of PC among the stroke population at an earlier stage as caregivers mentioned progressive communication difficulty and autonomy loss of the patients. Palliative healthcare professionals should promote the fundamental idea that death is a natural transition and an opportunity for all involving parties to grow spiritually and thus help patients and caregivers to put aside this taboo.

The findings echoed with the literature that reported a lack of a clear definition of PC, subject to disease attributes (eg, life-limiting), clinical indicators of advanced stage (eg, oxygen dependency), patients' choice of noncurative treatment, or an increased need of PC (eg, high level of dependence).24 Findings from this study show caregivers unanimously recognized the high care need of stroke survivors. Therefore, integrating high care needs as one defining feature of PC among stroke survivors may foster recognition of this concept as it relates to the patient's prognosis.32 The caregivers' preferred term “comfort care” should be integrated into defining palliation to offset the negative connotation of death from “palliative care.”12

Previous studies on PC in patients with stroke show that both patients and caregivers rendered communication as central to positive experiences of stroke.8 However, findings are inconsistent regarding the principle of communication because some suggested honest and straightforward information on prognosis to make informed decisions10,11 whereas some studies focus on communication skills to relieve distress and isolation.33 In this study, caregivers believed that their communication should only convey positive information and affection considering a patient's loss of autonomy and lack of specialist PC support. Evidence shows that an open discussion on death and dying is associated with better quality of life, lower caregiver burden, and reduced healthcare costs.8,34 Therefore, it is crucial to initiate these conversations early, followed by referral to PC services such as grief support, pain relief, and financial support.35 Furthermore, few caregivers used cognitive stimulation through reminiscence to boost positive emotions by bringing back the feelings tied to past positive experience. Neuroimaging studies also indicated that reminiscing about positive memories can promote the connectivity between the ventrolateral and dorsolateral prefrontal cortex, buffering the stress responses.36

The findings of this study mirror the existing evidence that the death taboo and dominant curative approach hinder the promotion of PC among the Chinese population.16,37,38 The concept of death seemed to be negative; discussion about death was considered disrespectful and may be viewed as curses.37 Death is not welcomed in many societies39; however, stroke patients' extensive struggles, avoidance over discussion of death, and communication difficulty at a late stage necessitate early action. Delineating the late stage survival situation and caregiving burden may outweigh some barriers of initiating PC early on, such as patients and family members' lack of awareness and professionals' reluctance to open difficult conversations.40,41 Health professionals are in a unique position with expertise to initiate advance care planning to fully introduce PC.40 To fill in the huge human resource gaps in PC service, professionals should be trained in a culturally and contextually appropriate approach to hone skills in physical care, communication, emotional support, and cognitive stimulation. More importantly, professionals should be guided by the fundamental and universal principle of PC: viewing death as a transition and making it a life-affirming and meaningful experience.42

Limitations

The qualitative nature of the study may challenge its generalizability from a pragmatic viewpoint. However, the findings have the potential for cross-cultural applicability as PC is holistic, explaining the universality of human character and strategies to enhance comfort.43 The research team attempted to recruit male caregivers but only one participated. The researchers tried to recruit family members as primary caregivers but failed because all primary caregivers in the study setting were hired caregivers. Contractual caregiving relationships may have limited the richness of other themes on PC (ie, spiritual care or more in-depth psychosocial care) to surface. The results may also be limited because hired caregivers had no decision-making capacity about the care of patients with stroke. Participants in a face-to-face setting may feel uncomfortable or hesitant to discuss sensitive topics such as death.

Implications

This study suggests that patients with stroke experience extensive physical symptom burden and have unmet PC care needs, with minimal specialist PC support throughout the dying trajectory. A clear definition of PC that delineates the attribute of high care needs and the purpose of promoting comfort may promote recognition and operation of PC in stroke clinical settings. China's healthcare system should involve patients with stroke in the scope of PC services to meet physiological needs, communicate care, provide emotional support, and stimulate cognition. Health professionals should be prepared to initiate advance care planning for patients and family members at an early stage after stroke. Using culturally appropriate wording and placing emphasis on the death experience in different phases of PC, such as grief support and pain relief, may make the conversation less sensitive.35 All the interviews were conducted in China, but evidence shows that culture affects people's death view; future studies can expand to other geographic regions, such as Chinese immigrants in high-level healthcare systems, to explore how PC services influence the death taboo among Chinese patients and caregivers.

Conclusion

Despite the uncertainty in stroke prognosis, the life-threatening attributes, high care needs, and overwhelming disease burden are comparable with other illnesses with a clear dying trajectory. The core attributes of PC that include meeting physiological care needs, ensuring communication, providing psychoemotional care, and stimulating cognitive reaction should be incorporated into stroke PC. The perceived sensitivity over discussion of death should be approached strategically by introducing advance care planning and specialized PC to enact such core attributes, guided by the fundamental idea of viewing death as a meaningful transition. This proactive approach may allow healthcare professionals to initiate a healthy conversation with patients at an early stage to prepare patients and caregivers for the shift from life-prolonging treatment to comfort care.

What’s New and Important

  • Identification of the key domains of comfort care to optimize PC among patients with stroke in China.
  • Avoiding discussions on death and dying has prohibited stroke PC service.
  • The high care burden and unmet needs of patients with stroke are considered key motivators in operationalizing PC in China's healthcare system.

Acknowledgments

The author J.J.S. would like to thank “Angel S.P. Chan Lau Endowment in Health & Longevity.”

The authors would like to thank Prof Sharon Redding for her comments and editing inputs.

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Keywords:

caregiver; palliative care; qualitative study; stroke

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