Factors related to terminal cancer patients’ trust in palliative care doctors from the point of view of bereaved family members: a qualitative study

doi:10.21203/rs.3.rs-2089646/v1

Download PDF

Research Article

Factors related to terminal cancer patients’ trust in palliative care doctors from the point of view of bereaved family members: a qualitative study

https://doi.org/10.21203/rs.3.rs-2089646/v1

This work is licensed under a CC BY 4.0 License

Version 1

posted

You are reading this latest preprint version

Background

Trust is a key factor in achieving a good death. However, few studies have focused on factors that help terminal cancer patients to establish trusting relationships with their palliative care doctors. We therefore designed this exploratory qualitative study to identify factors related to terminal cancer patients’ trust in their doctors.

Methods

We conducted a semi-structured interview with 18 participants for data collection, and we opted to use the grounded theory approach in our analysis of the data.

Results

Our data revealed seven factors: 1) caring attitude, 2) symptom management, 3) courteous and specific explanations, 4) long-term involvement in the patient’s care, 5) being faced with inevitable death, 6) good impression of the institution, and 7) referral by a trusted doctor. These factors are categorized under three main themes: [1] palliative care doctors, [2] terminal cancer patients, and [3] institutional and professional reputation. Three of these factors are uniquely characteristic of palliative care: symptom management, being faced with inevitable death, and referral by a trusted doctor.

Conclusions

In this study, we clarified the seven factors with a qualitative study evaluating the perspective of bereaved family caregivers on aspects that related to their corresponding patient`s trust in palliative care physicians. In future, more quantitative research is needed to assess the validity of the factors identified here and to understand how these factors are associated with quality of death.

palliative care

trusting relationship

end-of-life care

good death

qualitative study

grounded theory approach

The Institute of Medicine defined good death “free from avoidable distress and suffering for patient, family, and caregivers, in general accord with the patient’s and family’s wishes, and reasonably consistent with clinical, cultural, and ethical standards. ^[1] ” Achieving a good death is major outcome in palliative care. Previous studies have reported that trust to doctors is a key factor in achieving a good death^༻2༽. Hamano and colleagues have reported that trust of the patient in home hospice staff, are associated with the quality of death for cancer patients dying at home.^༻3༽. However, few studies have clarified the factors that promote and enhance trusting relationships between terminal cancer patients and palliative care doctors. People often use the word “trust” in daily life, but few people do so based on an explicit definition of the term. We should therefore investigate trust. Research to identify factors that engender trust in physicians among end-of-life patients is needed, since investigating the conditions under which trust forms could help to refine the insights obtained in previous studies and even contribute to ensuring that patients achieve a good death.

Definitions and concepts of trust have been studied in both the medical and the social fields. “Trust” is broadly defined as a state of expecting certain behaviors and intentions from others ^{[5, 6, 7]}. In doctor–patient relationships, patients expect doctors to give them an appropriate diagnosis and treatment. The fulfillment of this expectation leads to trust. In addition, Hall and colleagues have reported that trust is inseparable from the vulnerability created by illness and invasive treatment^༻8༽. Previous studies have found that trust in medicine is generated by these expectations and vulnerabilities^{༻5, 6, 7, 8༽}. These studies have also shown that trust may have qualitatively different forms.

Previous studies have shown several doctor-related factors to be associated with trust in the doctor–patient relationship. These include background factors such as age, gender, country of training, years of experience, and institution of practice, as well as personal attributes such as attitude, competence, patient-centered communication, honesty, sincerity, altruistic behavior, insusceptibility to medical errors, and being a family physician or relative. Other studies have linked trust with interpersonal factors such as providing full explanations of care, doctor–patient relationship length, visit/appointment length, and hygienic appearance, and social factors such as appearances in mainstream media, a good reputation, a recommendation from the patient’s family, and the doctor’s status in the medical community ^{[9, 10, 11, 12, 13, 14]} .

The factors associated with end-of-life patients’ trust in their palliative care doctors may not be the same as those associated with the trust other patients have in their doctors. Hillen has studied trusting relationships between oncologists and cancer patients ^{[15, 16]}, but has not focused on palliative care doctors or patients who are near death. Indeed, to our knowledge, few studies have focused on this subset of doctors and patients. Patients at the end of life are different from other patients in that they recognize that their death is near. They gradually weaken, and curative treatment is not an option. These differences might lead to different factors being associated with trust in the doctor–patient relationship. Therefore, research focusing on palliative care doctors and patients is needed. Furthermore, clarifying the crucial factors in these relationships may help to facilitate the construction of good relationships, and this may contribute to the patient’s achieving a good death. Since terminal cancer patients gradually lose the ability to communicate with their palliative care doctors as a result of their disease, numerous previous studies evaluating end-of-life care have targeted their bereaved family members instead. In this study, we interviewed the family members of deceased cancer patients to explore bereaved caregiver perceptions of factors that contributed to patient trust to doctors.

2.1 Setting and Study period

This qualitative study was conducted in Japan to clarify factors related to patients’ trust in the palliative care doctor between 12 November 2019 and 30 September 2020.

2.2 Respondents

Family members of cancer patients who died in Jichi Medical University Hospital’s palliative care unit between 1 January 2013 and 30 September 2018 were recruited as respondents. We defined the Family members "those closest to the patient and care them intimately". It includes not biological family. Respondents diagnosed with dementia and youths under 20 years old were excluded. The first and second respondents were selected by purposive sampling from 71 bereaved family members, and the third and subsequent respondents were selected by theoretical sampling.

2.3 Data collection and interview contents

Data were collected in semi-structured interviews by the first author who had not participated in the treatment of the patient and never met the respondents. All interviews were conducted by the first author and recorded using an electronic audio-recording device. Before starting each interview, the following information was collected from the patient’s medical records: age, gender, history of terminal illness, period of hospitalization, we also recorded the respondent’s age, gender, and relationship to the patient. We prepared an interview guide composed of four parts: 1) the patient’s relationship with their palliative care doctor; 2) reasons the respondent trusted (or distrusted) the doctor; 3) reasons the patient had trusted (or distrusted) the doctor; and 4) the degree of trust placed in the doctor (on a scale of 0–10) personally and by the patient. The interviews were largely conducted according to the script in the interview guide, although additional clarifying questions were asked if unclear points remained.

2.4 Data analysis

In this qualitative study, we opted to use the grounded theory approach¹⁷⁾ to explore the factors related to terminal cancer patients’ trust in palliative care doctors. The analysis was conducted by three investigators. After the first respondent had been interviewed, the contents of the interview were transcribed verbatim, and factors related to the patients’ trust of their doctor were extracted from the transcript. This process was repeated for another respondent. In order to avoid the perception of the respondent biasing the construct of patient trust. the analysis was conducted after interviewing reasons the respondent trusted (or distrusted) the doctor and reasons the patient had trusted (or distrusted) the doctor, excluding factors that the respondent considered relevant to the formation of a trusting relationship with the physician Factors extracted from the second interview were compared with those generated by the first one, and any new factors were added to the construct. These steps were repeated until no new factors could be extracted (i.e., until we reached theoretical information saturation), at which point the recruitment and interviews were stopped. In addition, factors were analyzed with respect to “the trust”, which was determined based on the specific language chosen by respondents (e.g., in English, have to trust or we have no choice and so on). We divided “the trust” into two categories: “expectation-based trust” (positive trust) and “need-based trust” (negative trust).

2.5 Ethics approval

This study was approved by the institutional review board of Jichi Medical University. Informed consent was obtained from all respondents before the study started.

3.1 Seven factors were related to terminal cancer patients’ trust in palliative care doctors

We recruited a total of 18 respondents (Table 1); the mean interview time was 34 minutes. Each respondent represented one patient, and the group of patients comprised eight males and ten females who were aged 49–76 when they died. We identified the following seven factors related to patients’ trust: 1) caring attitude; 2) symptom management; 3) courteous and specific explanations; 4) long-term involvement in the patient’s care, (i.e., by the palliative care doctor); 5) being faced with inevitable death; 6) good impression of the institution; and 7) referral by a trusted doctor. On these factors, 3) courteous and specific explanations and 5) being faced with inevitable death were the most discussed: 10 out of 18. We constructed a theoretical framework to describe the relationship of these seven factors to the patients’ trust (Fig. 1). We then categorized the factors under three main themes: [1] palliative care doctors, [2] terminally ill patients, and [3] professional reputation (Fig. 2). The theme of palliative care doctors includes four factors: caring attitude, symptom management, courteous and specific explanations, and long-term involvement in patient’s care. The theme of terminal cancer patients includes one factor: being faced with inevitable death. The professional reputation theme includes two factors: good impression of the institution and referral by a trusted doctor. Note that expectation-based trust is related to all seven factors, while need-based trust is related only to one: being faced with inevitable death.

Table 1

Demographic characteristics of the participants and patients
Interviewees
Age
< 65 years old	8 (44.4%)
≥ 65 years old	10 (55.5%)
Gender
Male	7 (38.9%)
Female	11 (61.1%)
Relationship to patient
Spouse	15 (83.3%)
Child	1 (5.5%)
Sibling	2 (11.1%)
Period until the interview after the patient’s death
751.2 ± 156.7 days (Mean ± SD)
Patients
Age
< 65 years old	10 (55.5%)
≥ 65 years old	8 (44.4%)
Gender
Male	10 (55.5%)
Female	8 (44.4%)
Length of palliative care
< 1 week	4 (22.2%)
1–2 weeks	6 (33.3%)
2–3 weeks	1 (5.5%)
3–4 weeks	2 (11.1%)
> 4 weeks	5 (27.8%)

[insert Fig. 1. Theoretical framework of the seven factors associated with the two types of trust.]

Solid arrows indicate the relationships of the seven factors identified in this study with the two types of trust (i.e., expectation- and need-based trust). Dashed arrows indicate interactions between categories. Parenthetical “ID” codes are the respondents’ identification numbers. Relationship properties are denoted by bold font; dimensions are preceded by a colon (:).

[insert Fig. 2. Conceptual diagram of terminal cancer patients’ trust in palliative care doctors]

The theme of palliative care doctors includes four factors: caring attitude, symptom management, courteous and specific explanations, and long-term involvement in patient’s care. The theme of terminal cancer patients includes one factor: being faced with inevitable death. The professional reputation theme includes two factors: good impression of the institution and referral by a trusted doctor. Note that expectation-based trust is related to all seven factors, while need-based trust is related only to one: being faced with inevitable death.

[1] Palliative care doctors

This first theme included four factors: 1) caring attitude, 2) symptom management, 3) courteous and specific explanations, and 4) long-term involvement in patient’s care.

1) Caring attitude

1–1) Compassion

The respondents said that doctors who displayed a compassionate attitude towards patients helped to build trusting relationships. In this context, compassion means “familiar”, in the sense that the doctor treated the patient like their own family. Just as important, however, was that the doctor was “attentive”, responding to patients’ questions conscientiously and caring for them as individuals. The respondents said that the palliative care doctors’ compassion affected the patients’ treatment.

“I think compassion is related to trust … I mean, it is important for doctors to walk in patients’ shoes. It affects their treatment. If patients close their minds, treatment doesn’t go well.” (ID 11)

“The palliative care doctor was compassionate [to the patient]. He treats his patients like his family and respects their lives on an individual basis.” (ID 04)

“I think she trusted the doctor because he explained things and he was compassionate. She thought that the doctor treated her earnestly. When she talked to the doctor, the doctor would answer faithfully.” (ID 09)

“The doctor treated him earnestly and respected him. So, he trusted him. When he felt sick, the doctor would see him immediately. When making an appointment, the doctor would tell him to come at 3 pm, things like that. He took comfort in the fact that he could be seen quickly in urgent situations.” (ID 18)

1–2) Communication

The respondents reported that communication relieved the patients’ anxiety. Patients confessed things to their doctors that they could not confess to their family, such as the pain of their symptoms and the difficulty of their treatment, and felt relief when their doctors listened to them. Furthermore, the doctors sometimes told jokes to relax the patients and lighten the mood, which facilitated conversations.

“He listened to the doctor’s explanations carefully, which took a load off his mind. So, he apparently trusted the doctor.” (ID 16)

“Through conversations with the doctor, he got his bad feelings out. He would tell the doctor things he couldn’t tell his family [when he was undergoing] outpatient care, such as [describing] his tough situation and the pain of undergoing treatment.” (ID 11)

“I might rate his degree of trust as 10 [out of 10]. He told me, ‘The doctor and I have a relationship where we are able to joke with each other.’ When I heard that, I thought the doctor made jokes to relax him.” (ID 12)

2) Symptom management

The respondents reported that good symptom management by the palliative care doctor was related to the formation of trusting relationships.

“Usually, he rarely complained, but he said, ‘I can't stand the pain anymore.’ He trusted the doctor because he had the doctor relieve the pain.” (ID 10)

“He wanted to rest without pain, anxiety, or distress. The palliative care team made him comfortable and eliminated his pain. That’s why he trusted the doctor.” (ID 11)

“My dad’s hope was that his distress would be relieved, which matches the direction of palliative care. That’s why he trusted the doctor.” (ID 12)

3) Courteous and specific explanations

This category is most discussed in this study as well as 5) Being faced with inevitable death. The respondents indicated that courteous and specific explanations were related to the formation of trusting relationships because they alleviated anxiety. The topics explained by the doctors included palliative care policies, the patient’s condition, life expectancy, hospice location, opioid medications, and symptoms that were predicted to appear close to death. The respondents also indicated that truthful estimates of the patients’ life expectancy directly earned the patients’ trust.

“The doctor explained everything from A to Z, that’s why she trusted him. She wanted to be back home, so she would ask the doctor about what she didn’t understand and the possibility of returning home.” (ID 09)

“The doctor faithfully explained how long he would live, which was based on evidence. Such honest explanations, not mincing words, were what made him trust the doctor.” (ID 10)

“My wife refused to take medicines, so the palliative care doctor explained that the medicine was needed to relieve her pain, so she started to take the painkillers.” (ID 15)

4) Long-term involvement in the patient’s care

4 − 1) Length of care

Length of care was related to trust formation. The respondent explained that there were more opportunities for the patients to interact with palliative care doctors the longer they were cared for. While some felt the length of time was important, others felt that the content of the conversations was more important to building trust than time per se.

“He trusted Dr. A, the oncologist who treated my husband on a long-term basis. But he only met a palliative care doctor on the day he was hospitalized, and had no connection with the doctor after that. So, I have no idea whether he trusted the palliative care doctor.” (ID 08)

“The longer he was cared for, the more he and the doctor talked together; [that’s why] he trusted the doctor.” (ID 10)

“I get the sense that it’s not the number of days [a patient is cared for that fosters trust], it must be the content of the conversations. Patients feel calmer based on how much doctors tell them.” (ID 17)

4 − 2) Familiar doctor

One respondent revealed that her mother’s experience tending to a relative in the same palliative care unit had fostered a trusting relationship with the palliative care doctor there when she was admitted to the ward herself.

“My wife already knew Dr. B as the palliative care doctor who was in charge of her mother-in-law’s care previously. She often said that he was familiar with medication, and particular about the details of prescriptions.” (ID 15)

[2] Terminal cancer patients

This second category included a single factor—5) being faced with inevitable death—which consisted of three components: physical disability, incurable disease, and recognition of one’s life expectancy.

5)Being faced with inevitable death

5 − 1) Physical disability

The respondents reported that the patients had no choice but to trust their doctors, because of their gradual weakening due to their terminal cancer. Physical disability in this context means that patients were unable to talk or take care of personal matters independently.

“Before he passed away, he had no voice and couldn’t move the way he wanted. So, he had to rely on … [and] trust the doctor; I think that’s why it was tough for him.” (ID 15)

5 − 2) Incurable disease

The respondents reported that the patients had undergone various treatments such as chemotherapy, radiation, and surgery before they were hospitalized in the palliative care unit. They had therefore recognized that their illness was incurable and that they had no further treatment options except palliative care; therefore, they had to trust the doctor.

“There were no treatments that could cure him. So, he had nothing to depend on, except palliative care. That’s why he trusted the doctor.” (ID 04)

“He left it to the doctor, it couldn’t be helped. He’d undergone various treatments for two and a half years, he understood this. Then, an oncologist told him, ‘If this anticancer drug is ineffective, there is no effective medicine.’ So, he knew there was no possibility of his illness being cured.” (ID 07)

5 − 3) Recognition of life expectancy

Recognizing their limited life expectancy led to the patients’ placing their trust in their doctors. While some respondents used language such as “the doctor’s hands” or being “helpless”, others said that the patients wanted to live out their remaining days to the fullest extent and trusted their doctors’ advice on how to die well.

“My wife said she was helpless, that her fate was out of her control. I guess it was in the doctor’s hands. When she moved from gynecology to the palliative care unit, she recognized that her life expectancy was limited. So, she trusted the doctor completely.” (ID 01)

“He trusted the doctor because he knew that he was dying.” (ID 06)

“They were his last moments. I think he might trust a doctor. He would like to go to his final glory.” (ID 07)

“It seems to me she wanted to live out her last days by doing as the doctor said. The only medications she could take were painkillers; she couldn’t eat or drink anything. She wanted to live her last days by trusting the doctor.” (ID 15)

[3] Professional reputation

This third category included two factors: 6) good impression of the institution and 7) referral by a trusted doctor.

6) Good impression of the institution

A good impression of the institution of care mattered. Aspects included being a well-equipped institution, being engaged in cancer research, and brand image. The respondents reported that a good impression of the institution led to trust in the institution, and moreover, that the patients’ positive views of the institution promoted their trust in the doctors who belonged to it. Thus, the hospital where a palliative care doctor works is an important factor that promotes their patients’ trust.

“My wife favored the hospital. She said it is the best institution in our region. The doctors belonging to the hospital have good medical skills and explain things well. That’s why my wife trusted the hospital, I think. She was also affected by the following two factors: the hospital being a well-equipped institution and the brand image of the hospital. Those factors led to her trust.” (ID 15)

“The hospital has conducted a lot of oncological surveys. It appeared in some newspapers. So, since it has a famous oncologist, other doctors in the hospital would be trained by him. That’s why she trusted the hospital.” (ID 07)

7) Referral by a trusted doctor

According to the respondents’ explanations, the patients tended to recognize that they would receive the best medical care by being referred to another department. Some of the respondents reported that the patients had already built a trusting relationship with their former doctor, which carried over to their relationship with their palliative care doctor.

“The oncologist referred her to palliative care, and she thought the doctor would provide her with the best treatment.” (ID 01)

“My son trusted the palliative care doctor because he was referred by a previous doctor whom my son trusted and who knew his condition in detail. The opinion of the previous doctor had a large influence on us.” (ID 08)

3.2 Factors not related to trust

All the respondents stated that trust was unrelated to the sex, age, job title, or institution of training of the palliative care doctor.

Although a few respondents stated that their relative had previously experienced events that left them with a distrust of medicine, this did not affect their trust in their palliative care doctor.

3.3 Degree of trust of the patients and family

According to the respondents, the degree of trust placed in their palliative care doctor by the patients, on a scale of 0–10, was 9.1 ± 1.4 (n = 16; two cases claimed not to know their relative’s opinions on the matter). In comparison, the respondents reported their own degree of trust in the same doctor as 9.1 ± 1.5 (n = 18).

4.1 Factors explored in this research

One of the objectives of this research was to explore the factors related to terminal cancer patients’ trust in palliative care doctors. We extracted seven factors: 1) caring attitude, 2) symptom management, 3) courteous and specific explanations, 4) long-term involvement in patient’s care, 5) being faced with inevitable death, 6) good impression of the institution, and 7) referral by a trusted doctor. These could be divided into three themes: [1] palliative care doctors, [2] terminal cancer patients, and [3] professional reputation. The patients’ trust was rated 9.1 ± 1.4 out of 10, on average, by the 16 bereaved family members interviewed, indicating that these terminal cancer patients had considerable trust in their doctors.

In previous studies focused on patients who did not have a terminal illness, the factors related to patient trust have been broadly divided into two classes of skills: interpersonal and technical. Interpersonal skills include listening, having a caring attitude, compassion, honesty, and communication, while technical skills include experience and medical competence ^{[9, 10, 12, 13, 15, 16]}. The factors of caring attitude, courteous and specific explanations, and long-term involvement in patient’s care would be classified as interpersonal skills, while symptom management would be a technical skill. All of the interpersonal skills identified here have already been reported in previous research and are thus not unique to palliative care. However, we found that courteous and specific explanations affect being faced with inevitable death and symptom management, because they help the patient to recognize that their life expectancy is limited and mentally prepare them for death. Moreover, the doctor’s explanations enhance the patient’s understanding of the care policy and the importance of palliative care. This may contribute to improving medication adherence and symptom management, and this led to the patients’ placing their trust in their doctors. Therefore, courteous and specific explanations may play a key role in building a trusting relationship.

4.2 Factors characteristic of end-of-life patients and palliative care doctors

Three factors identified here have not been reported in previous research, making them unique to palliative care: symptom management, being faced with inevitable death, and referral by a trusted doctor.

Symptom management is one element a patient expects from a palliative care doctor. Yoong and colleagues indicate that the most common reason patients undergo treatment is for symptom management ^[18]. In this study, our respondents reported that the patients hoped to have their pain, malaise, and other symptoms relieved, indicating that symptomatic relief is related to patients’ trust. Miyasita and colleagues reported that dying well requires alleviation of the patient’s symptoms^༻1༽. Therefore, terminal cancer patients trust a palliative care doctor to help them achieve a good death.

Hillen and colleagues have previously reported that patients’ need-based trust seems to emerge from the severe, sometimes life-threatening nature of cancer ^[14]. They also found that especially during the acute phase shortly after diagnosis, when time matters, patients indicated that they needed to trust their oncologist to an almost unlimited degree. But Hillen et al. did not specify being faced with inevitable death or any of its components: physical disability, incurable disease, and recognition of limited life expectancy. In this study, we found that the patients’ need-based trust emerged from such components.

Referral by a trusted doctor was also related to the patients’ trust. This factor has not been reported in previous research. There are few studies on palliative care doctors in previous research. Palliative care doctors start to intervene in patient care after referral by other doctors. Therefore, palliative care doctors necessarily receive patient referrals more frequently than other doctors. That is why this factor—referral by a trusted doctor—is particularly important in palliative care.

4.3 Two qualitatively different forms of trust

We observed two types of trust, based on the respondents’ remarks, which could be classified as ‘positive’ and ‘negative’, according to motivation. Some of the respondents explained that the patients wanted to spend their remaining days resting without distress, and this is why they trusted their palliative care doctors. This trust—which we called “expectation-based trust”—was directly linked to their expectations of dying peacefully and painlessly, indicating similar qualities to the definition used by scholars such as Möllering and Mayer et al.: “a state of favorable expectation regarding other people’s actions and intentions. ^{[3, 6]} ” On the other hand, some respondents expressed the concepts “having no choice but to trust” and “leaving things in the doctor’s hands”. We called trust based on such feelings “need-based trust”, which is similar to “the need to trust” reported by Hillen^༻16༽. He identified life-threatening illness and the acute phase of illness as factors leading to this need to trust, but did not indicate that physical disability (5 − 1), incurable disease (5 − 2), or recognition of limited life expectancy (5 − 3) were important aspects. These three factors have not been reported in past research on terminal cancer patients, and yet are unique characteristics of terminally ill patients. Terminal cancer patients’ trust consists of expectations of palliative care doctors and the need to trust. Expectations of palliative care doctors are related to all seven factors identified here, whereas need-based trust is related to the fifth factor only: being faced with inevitable death. However, when approaching death, some patients opt willingly to trust their doctors to provide a peaceful death, while others are forced to trust their doctors by their situation. Therefore, recognizing the reality of imminent death does not necessarily lead to need-based trust. Previous research has reported that trust is a key factor in achieving a good death^{༻1, 2༽}. However, it is unclear how the two qualitatively different forms of trust affect this relationship, and further research is needed to address this issue.

4.4 Limitations

This study has a few limitations. First, it was conducted at a single facility, so it may not have captured the full range of variation in the population. Second, we exclude the content of the respondents’ trust in their doctors from result, to avoid affecting respondent's perception in the results, although it was difficult to eliminate it completely. Moreover, just as trust in medical facilities leads to trust in the palliative care doctors in their employ, trust in the full palliative care team may also have influenced the respondents’ trust in the doctors. Third, since this study was conducted after the patients had died, the interviewees’ satisfaction with the care provided may have affected our findings. Forth, in order to examine whether factors related to trust identified in previous research articles would have similar results in this study, this interview guide also included closed questions. but these questions may bias results in this research. Moreover, this study was conducted one to five years after the patient's death. With the purpose of recalling that time, we introduce the relative’s care history in the questions prior to asking the participant to talk about the patient’s trust experience. this could be a leading question.

This study revealed seven factors that encourage terminal cancer patients to establish and build trusting relationships with their palliative care doctors: 1) caring attitude, 2) symptom management, 3) courteous and specific explanations, 4) long-term involvement in the patient’s care, 5) being faced with inevitable death, 6) good impression of the institution, and 7) referral by a trusted doctor. We categorized these factors under three main themes: [1] palliative care doctors, [2] terminal cancer patients, and [3] professional reputation. Three of these factors are uniquely characteristic to the field of palliative care: symptom management, being faced with inevitable death, and referral by a trusted doctor. Expectations of palliative care doctors and conditions necessitating trust underlie terminal cancer patients’ trust in their doctors. In palliative care, not only are the life-threatening illness itself and its acute phase related to need-based trust, but so are other important factors: physical disability, the fact that the illness is incurable, and recognition of a limited life expectancy. The aim of this study was to identify factors related to terminal cancer patients’ trust in their doctors from there bereaved family caregivers` perspective, using a qualitative methodology. In future,more research is needed to assess the validity of the factors identified here and to clarify whether these factors encourage terminal cancer patients to establish and build trusting relationships with their palliative care doctors and potentially contribute to achieving a good death as a result.

Ethics approval and consent to participate

The study was approved by the Ethics Board of Jichi Medical University (number 20-010) and performed in accordance with the Declaration of Helsinki. Informed consent was obtained from all respondents before the study started.

Consent for publication

Not applicable.

Availability of data and materials

The data that support the findings of this study are available upon request from the corresponding author. The data are not publicly available due to privacy.

Competing interests

The authors declare that they have no conflicts of interest.

Funding

No competing financial interests exist.

Authors' contributions

M.M. contributed to the concept and design of the study; contacted respondents, data collection, interpretation, analysis of data, and writing the manuscript.

K.T. and T.T. contributed to the data analysis, they make interpretation of the data deeply. Furthermore, they contribute to manuscript editing. All authors read and approved the final manuscript.

Acknowledgements

We would like to express our deepest gratitude to Professor Kaichiro Tamba, Department of Palliative Medicine, Jichi Medical University, for his guidance and encouragement in conducting this study and writing this paper. We would also like to express our gratitude to Dr. Tomoaki Takanashi, Faculty of Health Care, Tokyo Ariake University of Medical and Health Sciences, for his guidance on qualitative research methods. We would like to express our sincere gratitude to the bereaved families who cooperated in this study.

Institute of Medicine (US) Committee on Care at the End of Life. Approaching death: improving care at the end of life. In: Field MJ, Cassell CK, editors. Washington DC: National Academy Press; 1997. p. 24-25.
Miyashita M, Morita T, Sato K et al: Good Death Inventory: A Measure for Evaluating Good Death from the Bereaved Family Member's Perspective. Journal of Pain and Symptom Management 2008; 35: 486-498..
Hamano J, Morita T, Fukiu S et al. Trust in Physicians, Continuity and Coordination of Care, and Quality of Death in Patients with Advanced Cancer. Journal of Palliative Medicine. 2017; 20: 1252-1259.
Heyland DK, Dodek P, Rocker G et al: What matters most in end-of-life care: perceptions of seriously ill patients and their family members. Canadian Medical Association Journal, 2006; 174: 627-633.
Möllering G. The nature of trust: from Georg Simmel to a theory of expectation, interpretation and suspension. Sociology. 2001; 35: 403-420.
Mayer RC, Schoorman DF and Davis JH: An Integrative Model of Organizational Trust. The Academy of Management Review. 1995; 20: 709-734.
Kim AM, Bae J, Kang S et al: Patient factors that affect trust in physicians: a cross-sectional study. BMC Family Practice. 2018; 19: 187-194.
Hall MA, Dugan E, Zheng B et al: Trust in physicians and medical institutions: what is it, can it be measured, and does it matter? The Milbank Quarterly. 2001; 79: 613-639.
Pearson SD and Raeke LH: Patients' Trust in Physicians: Many Theories, Few Measures, and Little Data. Journal of General Internal Medicine. 2000; 15: 509–513.
Hall MA, Camacho F, Dugan E et al: Trust in the Medical Profession: Conceptual and Measurement Issues. Health Services Research. 2002; 37: 1419–1439.
Etuyo N, Atushi A, Motoki O et al: [The Structure of Japanese Trust and Distrust in Medicine: Focusing on the Doctor-Patient Relationship.] Nihonjin no iryou ni taisuru sinrai to husin no kouzou : Ishikanjakankei wo Chuusinni (in Japanese).Taijin syakai sinrigaku kenkyu (Interpersonal and Social Psychology Research) 2004; 4: 11-20.
Shaya B, Homsi NAl, Eid K, et al: Factors associated with the public’s trust in physicians in the context of the Lebanese healthcare system: a qualitative study. BMC Health Services Research. 2019; 19: 525-533.
Fiscella K, Meldrum S, Franks P et al: Patient trust: is it related to patient-centered behavior of primary care physicians? Medical Care. 2004; 42: 1049-55.
Croker JE, Swancutt DR, Roberts MJ et al: Factors affecting patients’ trust and confidence in GPs: evidence from the English national GP patient survey. BMJ Open. 2013; 3: 1-8.
Hillen AM, Haes HCJM, Smets EMA: Cancer patients' trust in their physician—a review. Psycho-Oncology. 2011; 20: 227-241.
Hillen MA, Onderwater AT, van Zwieten MCB et al: Disentangling cancer patients' trust in their oncologist: a qualitative study. Psychooncology. 2012; 21: 392-399.
Shigeko SC: [Conceptual of Grounded Theory Approach] Grounded Theory Approach no gairon (in Japanese). Keio SFC Journal. 2014; 14: 30-43.
Yoong J, Park ER. Greer JA, Jackson et al. Early Palliative Care in Advanced Lung Cancer. A Qualitative Study. JAMA Internal Medicine. 2013; 173: 283-290.

No competing interests reported.

Interviewguide.docx

Download PDF

Version 1

posted

You are reading this latest preprint version

Factors related to terminal cancer patients’ trust in palliative care doctors from the point of view of bereaved family members: a qualitative study

Status:

Version 1

Abstract

Background

Methods

Results

Conclusions

Figures

1. Background

2. Methods

2.1 Setting and Study period

2.2 Respondents

2.3 Data collection and interview contents

2.4 Data analysis

2.5 Ethics approval

3. Results

3.1 Seven factors were related to terminal cancer patients’ trust in palliative care doctors

4. Discussion

5. Conclusion

Declarations

References

Additional Declarations

Supplementary Files

Status:

Version 1