Barriers to Goals of Care Discussions With Seriously Ill Hospitalized Patients and Their Families

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• Published: 08 June 2020

Barriers to advance care planning: a qualitative study of seriously ill Chinese patients and their families

• Doreen Au¹,
• Anthony H. F. Ip¹,
• Jenny Chan¹,
• Kenway Ng¹,
• Lok Cheung¹,
• Jacqueline Yuen^one,4,
• Elsie Hui²,
• Jenny Lee³,
• Raymond Lo⁴ &
• Jean Woo^1,four

BMC Palliative Care volume xix, Article number:80 (2020) Cite this article

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Abstract

Background

Accelerate care planning (ACP) facilitates identification and documentation of patients' treatment preferences. Its goal aligns with that of palliative intendance – optimizing quality of life of seriously ill patients. Still, concepts of ACP and palliative care remain poorly recognized in Chinese population. This written report aims at exploring barriers to ACP from perspective of seriously sick patients and their family unit caregivers.

Methods

This is a qualitative study conducted in a Palliative Mean solar day Care Centre of Hong Kong between October 2016 and July 2017. We carried out focus groups and individual interviews for the seriously ill patients and their family caregivers. A semi-structured interview guide was used to explore participants' experiences and attitudes about ACP. Qualitative content analysis was adopted to clarify both manifest content and latent content.

Results

A total of 17 patients and xiii family caregivers participated in our report. The qualitative analysis identified four barriers to ACP: 1) limited patients' participation in autonomous decision making, two) cerebral and emotional barriers to discussion, 3) lack of readiness and awareness of early word, and iv) unprepared healthcare professionals and healthcare system.

Conclusions

Participations of seriously ill patients, family unit caregivers and healthcare workers in ACP initiation are lacking respectively. A series of interventions are necessary to resolve the barriers.

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Background

Advance care planning (ACP) is an overarching process of proactive advice regarding end-of life intendance [ane]. Patients with avant-garde progressive disease make decisions regarding future medical care aligned with their individual preferences, in advance of mental incapability of determination making. Specifically, ACP for older adults includes several elements: one) discussions about values and preferences, 2) discussions with and designation of surrogate determination makers, 3) discussions virtually treatment options, four) accelerate directives (Advertizement) documentation [2]. Early and ongoing ACP conversations betwixt patients, families, and healthcare professionals can set patients for discussing specific goals of care [iii].

Palliative care improves quality of life of seriously sick patients and their family members through early prevention and relief of suffering [4]. Palliative care units have been recognized as appropriate setting to implement ACP [5]. ACP facilitates identification and documentation of private preferences. This aligns with goal of palliative care – optimizing quality of life of seriously ill patients [6]. Boosted benefits of ACP include reduced hospitalization, unnecessary futile treatments and price, and stress, anxiety and low of families [ii].

Meanwhile, in Hong Kong, palliative care and ACP are poorly recognized. Given that over 90% of deaths occur in hospitals [7] and the fact that Hong Kong population enjoys a high life expectancy at 60 [8], in that location will be a growing demand for palliative intendance in Hong Kong. Nonetheless, Hong Kong was ranked relatively depression in terms of palliative and healthcare environment and community engagement, lagging behind many other developed regions [9]. For instance, the Patient Self-Decision Act in the United Land requires most health care institutions to inform patients of their right to refuse medical intendance and right to provide accelerate direction [10]. The legislation successfully motivates majority of customs-dwelling older Americans to consummate AD [11, 12]. These patients received intendance that was strongly associated with their preferences, according to the data from the Wellness and Retirement Study [13]. In comparison, there is currently no legislation establishing the legal status of Advertizing in Hong Kong or in the rest of the China. As a result, majority of the citizens had non heard virtually Ad or did not prefer its documentation, although they were willing to talk over finish-of-life problems and were unwilling to suffer life-sustaining interventions [14, fifteen]. A local clinical chart review shows that more than than half of ACP discussions were first documented within a month earlier expiry, despite early on presentations of illnesses [16]. Unfamiliarly or novelty of the concept of ACP are suggested as major barriers to its initiation in Chinese customs [15].

Recognizing the delay in ACP uptake, implementing interventions in community and healthcare settings is necessary. This requires an understanding of existing barriers hindering ACP uptake. All the same, previous quantitative and qualitative studies were mostly conducted on healthcare professionals [17,xviii,19,twenty,21]. For instance, a Canadian clinician survey reveals that family member-related and patient-related factors are the almost of import barriers to goals of intendance discussions, whereas clinicians perceive their own skills and system factors every bit less important barriers [19]. However, at that place is limited prove reflecting perspectives of patients and family caregivers, who are central participants of ACP. They may have unlike attitudes and perspectives. Additionally, about of the studies exploring barriers to ACP are conducted in Western countries [18]. Despite being a former British colony, Hong Kong social club is nonetheless highly influenced by traditional Chinese cultural values. Such a culture may influence citizens' attitude and perspective. In view of the significance and famine of inquiry, this study aims to explore barriers to ACP amid seriously ill patients and their family members in Hong Kong.

Methods

Study background

This study is a part of Jockey Gild Finish-of-life Care Customs Project, which implements a chapters edifice and education programme in hospitals, residential care homes for the elderly, and the community at the New Territories Due east Cluster of the Infirmary Authority in Hong Kong [22]. The plan covered a wide variety of topics including communication skills in serious illness conversations and symptom management in end-of-life care through talks, workshops, forums, seminars, and conferences. It aims to improve the end-of-life care practices in hospitals through healthcare staff empowerment.

Study design and setting

This written report adopted a qualitative approach to explore terminally ill patients' and their family members' attitude towards and understanding of discussion on terminate-of-life issue. It was conducted in a palliative day intendance centre of a rehabilitative hospital in Hong Kong, where a multidisciplinary team cared for cancer and finish-stage not-cancer patients. The centre aimed to maximize patients' quality of life through symptom control, rehabilitative activities, psychological and social support, and recreational activities.

Subjects and procedures

Eligible subjects were palliative day care patients and their family caregivers aged 18 or above. They had no ACP initiation and documentation. Those with obvious cognitive and language impairment or unable to understand and speak Cantonese were excluded. We used purposive sampling to recruit the eligible subjects through referrals by nurses working in the centre. Subjects were sampled until content saturation was reached. Nosotros adopted the model of inductive thematic saturation, which suggests the extent to which new codes or themes are identified inside the data, rather than the completeness of existing categories [23]. In other words, we considered that farther data drove would not generate new insights once no additional meaningful units generated.

We carried out focus group word to explore their complex personal experiences, beliefs, perceptions and attitudes through chastened interaction [24]. After conducting three focus groups of patients to discuss, nosotros found that a number of participants were unable to come across at a item time together. Therefore, we conducted individual in-depth interviews instead. Like to focus grouping discussion, interviews can also uncover informants' perceptions and attitudes [24].

Data drove

Focus group discussions and individual interviews were conducted in a private room inside the palliative mean solar day intendance centre between Nov 2016 and July 2017. Two moderators asked questions and led the discussions or interviews. In lodge to allow flexibility, we used a semi-structured interview guide to explore participants' experience in and attitude towards iii subtopics: 1) goals of intendance advice, 2) information seeking and understanding, and 3) terminate-of-life conclusion making. The interview guide was developed based on discussions with experienced researchers and workers in end of life intendance (Additional file one and 2). For example, we asked the patients and their family members their motivation for knowing medical conditions and their bodily information seeking behaviour (question 2 and 3), in order to explore their willingness to discuss end-of-life issues and attitude-behaviour consistency. Supplementary and probing questions were also asked to analyze responses and to pursue new ideas. The individual interviews and the focus groups lasted for 20–30 min and approximately 1 h respectively. All interviews were audio-taped for accurate data transcription.

Prior to the interviews, a written informed consent was obtained from every participant. Ethical approval was granted from The Articulation Chinese University of Hong Kong – New Territories East Cluster Clinical Research Ideals Committee.

Data analysis

A nursing student transcribed the audio-recorded interviews verbatim in Cantonese. We then analyzed the transcripts using qualitative content assay, which focused on both manifest and latent content [25]. Manifest content refers to visible and obvious components of the text, whereas latent content and involves an estimation of the underlying meaning of the text [25].

Our analysis involved the following steps: 1) Reading through transcripts several times to obtain a sense of the whole; 2) Extracting text relating to difficulties in ACP uptake and converting the text into significant units; 3) Summarizing meaning units into condensed meaning units labelled with codes; 4) Comparing and contrasting the codes and sorting them into tentative subcategories and categories; 5) Revising the tentative categories and subcategories into more definitive ones. Quotes were selected through disquisitional word between authors. The first author translated the quotes to English while co-authors were responsible for proofreading.

Trustworthiness

Dependability (stability of findings over fourth dimension) was accomplished through stepwise replication, where three authors analyzed the transcripts separately [26]. The tentative categories and subcategories were then critically discussed and revised. Additionally, the commencement author adopted the code-recode strategy to code the data twice, giving a 1-month gestation period between codings. Differences between two codings were further discussed with the other two authors, in order to improve presentation of informants' narratives.

Credibility (truthfulness of research findings and correct interpretation of informants' original views) was established through peer debriefing [26]. The start writer sought comments from experts in geriatric and palliative medicine to improve the credibility of the findings.

Results

Fifty-1 patients and family unit caregivers initially agreed to participate. Twenty-1 of them dropped out on the account of, for instance, tiredness and emotional distress. The remaining 17 patients and thirteen family unit members participated in iii focus groups (two groups of three patients and one group of two patients) and 22 individual interviews (ix patients and thirteen family caregivers). Tabular array i summarizes their sociodemographic characteristics.

Tabular array 1 Contour of informants (n = 30)

Full size table

Our qualitative analysis identified four barriers to ACP: 1) express patients' participation in democratic decision making, ii) emotional barriers to word, 3) lack of readiness and awareness of early give-and-take, and 4) unprepared healthcare professionals and healthcare system.

Express patients' participation in autonomous determination making

Instead of indicating own preferences, terminally sick patients tended to get out cease-of-life decisions to their families and/or doctors, mainly due to their strong trust in their families and/or doctors and abstention of decisional conflicts. In addition, family members were reluctant to disclose medical data to the patients or to involve the patients in decision making.

Family-centered conclusion making

A patient was receiving chemotherapy with palliative approach. His treatment decision was non fabricated past himself but his girl.:

My daughter didn't ask my preference … I don't care what she has discussed with doctors. She knows me very well. (Patient, Male, Historic period lxx–79).

In improver, family members were reluctant to disembalm information regarding medical status to patients, in order to keep psychological brunt away from patients. This can, however, diminish patients' participation in ACP:

She will be nervous. This (information disclosure) volition but pose a burden on her. Her life should end peacefully. (Family unit, Female, Age 70–79; Patient, Female, Age ≥ 80).

Medico-centered determination making

With an absolute trust in doctors, both patients and family members believed that doctors would make the best treatment decisions.

Personally, I will let the doc brand decisions for me. If he thinks treatment is needed, and then I trust him. I ever concur with doctors. (Patient, Female, Age 60–69).

First, information technology is because I trust him (doc). Second, He won't do something bad for me because 'Doctoring is parenting' (a Chinese old saying). If he believes he can save that patient, he must exercise information technology. If he thinks (he can't) … and then no need to waste resources. (Family, Female, Age 70–79; Patient, Female person, Age ≥ 80).

Self-perceived incompetence in understanding treatment details was another reason underlying preference for dr.-centered conclusion making.

I would follow any instructions from doctors, because I don't know what (treatments) should be done equally the following steps. And so just let them determine. (Patient, Female, 60–69).

Avoidance of decisional conflict

More than than 1 handling selection would exist discussed in ACP. A patient, however, stated that he could exist overwhelmed past multiple options, which in turn discouraged him from discussing:

No. Sometimes there's likewise much information available. If you don't ask, there'll merely be ane direction and you become forwards. If you lot know more than, you won't know which way is better. (Patient, Female, 60–69).

Cognitive and emotional barriers to discussion

Several beliefs held by the patients might hinder ACP initiation. Some of them were not interested in conversations since they accept the inevitability of expiry or prioritize positivity over discussing life issues. Some were unwilling to express their thoughts so as not to burden their families.

Prioritizing positivity over life and decease

Patients tended to take the inevitability of death and to stay positive. In order to maintain a peace of mind, they neither actively sought information from doctors nor discussed their medical weather condition with doctors. Meanwhile, this prevented them from initiating end-of-life give-and-take:

To be honest, absolutely non (for medical data seeking). At our ages, expiry is inevitable. The most of import attribute of one'due south life is happiness. I have talked with doctors and have said I don't care (near prognosis and treatments) … If the doctors say 'no' (illness progression), then I will pretend to be fine. (Patient, Female, Historic period threescore–69).

Sense of powerlessness

Patients believed that their destinies, getting terminal illnesses, were predetermined. No thing what they did, they would end up with the aforementioned event – death. Hence, they consider ACP unnecessary.

Those who smoke can get lung cancer. Those who don't smoke can also get lung cancer. How to explain? I rather trust that is my fate. If y'all are destined for getting it, you can't avoid it. If non, you won't become it even you lot smoke or drink a lot … Just let it become if it cannot be cured (Patient, Male, 70–79).

Avoidance of burdening family

From perspectives of several patients, ACP discussion was complicated. They refused to initiate discussion in lodge to avert disturbing daily lives of their families:

At this stage, you cannot burden your family unit. My married woman and I are of similar historic period. It'south already very proficient if she can accept care of herself, isn't information technology? How can she accept care of you (me) too? Our sons and daughters have to work or become to schoolhouse. This (talking with family) will only bother them. (Patient, Male, seventy–79).

Reluctance to limited inner feelings

A family member mentioned that her husband (seriously ill patient) was unwilling to communicate his thought. In her opinion, low education and male person gender were the underlying reasons:

The problem is … you lot know I am 70 years old. Our generation have poor communication skills. Nowadays people accept received education. At least (they) have some basic knowledge of advice and know how to counsel. Our generation don't have (such knowledge) … To make things worse, he is a male, who is difficult to communicate with, or at that place is near no communication. He knows he has a serious affliction, only he seldom talks about what he wants, or annihilation else. (Family, Female, Historic period seventy–79; Patient, Male person, Age 70–79).

Lack of readiness for and awareness of early word

Terminally ill patients might non be ready for communication immediately after acknowledging their diagnosis. In improver, the patients and their family members were not aware of the option of early discussion also as its importance. These factors contribute to a delay in ACP initiation.

Lack of readiness for early on word

A family unit caregiver mentioned that patients might non be ready for discussion immediately after acknowledging their diagnosis and prognosis. Time was needed for patients to have and overcome their misfortune:

One and a one-half year has passed since diagnosis. Actually, just later knowing this news, I have tried to ask him what he was thinking about, what he wanted to practise, and which treatment approach he preferred. However, it may be impossible for patients to immediately understand why their atmospheric condition could only keep worsening. Information technology might take at to the lowest degree a few months to understand...Of course, the elderly usually tend non to talk about this (death bug). (Family, Female person, Age 30–39; Patient, Male, Age ≥ 80).

Lack of awareness of early word

A patient believed that she could not participate in ACP word, because she would not be able to do so at the cease-of-life phase:

At that moment (stop of life) I am already...how can I brand a decision? I will go out it to my family for sure. (Patient, Female, 60–69).

A family member as well had not even considered initiating word with her loved ane:

We have not talked almost it (terminate-of-life decision making), because wellness care in Hong Kong is splendid. My father'south condition remains well, so I didn't have any business concern earlier. But, after this interview, I recall I should ameliorate consider it. (Family, Female, Age 30–39; Patient, Male, Age ≥ 80).

Unprepared healthcare professionals and healthcare organisation

From perspectives of healthcare users, healthcare professionals were reluctant to and were unable to address medical, informational and emotional needs of the patients and their family unit members. Furthermore, factors hindering ACP may extend to health system level.

Reluctance to withhold futile life-sustaining treatment

Although a patient had expressed reluctance to receive futile life-sustaining treatments, an oncologist still kept persuading him to receive more treatments:

The consultant told me if I received the treatment then my life could exist extended for two months. If not, my life would be shortened for 2 months … At that time, I didn't desire to receive (the handling). But somewhen I received the treatment for three times. Later, he said I could continue to undergo the treatment. The more than treatments I received, the more sluggish I was. I asked whether I could quit. The consultant questioned me, "Actually?" … And in the side by side consultation, the md told me, I could proceed receiving treatment in view of my status … He asked "How nearly getting the handling again?" (Patient, Male, Age 60–69).

Unclear explanations well-nigh diagnosis, prognosis and treatment

Both patients and families stated that doctors tended to requite unclear responses or explanations virtually medical atmospheric condition at early phase. A family caregiver felt helpless when she knew her loved i had a serious illness. She hoped doctors and nurses could explicate more to address her needs on information:

For some patients or their families, the news came like a thunderbolt out of a clear sky. At that moment I was helpless. At the first, which ways the diagnosis stage, I hope doctors or nurses can explain the medical condition more than to patients or their families. (Family, Female, Age xxx–39; Patient, Male, Age ≥ lxxx).

Meanwhile, our participants interpreted this phenomenon in different ways:

It depends. Non every doctor explained so conspicuously. Maybe they did not have time … they had a lot of work. So, they could not answer then many questions (Family, Female, Age 60–69; Patient, Female, Age ≥ lxxx).

They are used to talking like that (giving vague explanation). I have seen a lot of doctors doing that. (Patient, Female, Age 60–69).

My mum's status keeps worsening. I told the doctor and he did not give me articulate responses, probably because he could non assistance me. (Family unit, Female person, Historic period lxx–79; Patient, Female person, Age ≥ 80).

Lack of communication skills and empathy

They also commented that doctors sometimes communicated in an unfriendly manner. This could hamper doctor-patient human relationship and hinder effective discussion:

A doc yelled "if yous don't receive the handling you will die" (in an oncology inpatient setting). From the perspective of patients, such words volition make united states experience down. So I think doctors, I don't know the reasons, but I think as a professional, the all-time fashion to communicate is not to say those words to a person in need … Sometimes their words are discouraging. (Patient, Female, lx–69).

Time constraints

Many participants cited the tight schedule of healthcare professionals as a bulwark to discussion:

I want to know the diagnosis and prognosis. I desire to know what volition happen if the condition keeps worsening. Only doctors (in astute setting) were actually too busy. He (doctor) talked with me in the corridor. That'due south depressing. (Family, Female, Age 30–39; Patient, Male, Historic period 80–89).

Lack of care continuity

Under the healthcare system of Hong Kong, patients usually are seen by different doctors across visits in the same clinical settings. They could inappreciably develop a long-term relationship and have continual communication with the same doctors. This might also prevent continual ACP discussion:

Consultations are delivered past dissimilar doctors. Information technology is non the same person every time. (Patient, Female, lx–69).

Discussion

In this qualitative study of 17 seriously ill patients and 13 family unit members in a Palliative Day Care Centre of Hong Kong, we place four barriers to ACP uptake. The barriers are discussed one by ane as follow. Given that research on Chinese patients reaching the end of life stage undergoing care in hospitals is sparse, our report tin can fill the inquiry gap.

Express patients' participation in autonomous conclusion making

While the locus of the western model of medical decision making is the patient, still, this report demonstrates that family unit members are primary decision makers for Chinese patients. Under Confucian tradition, the Chinese families often function as units in medical decision making [27]. At the same time, Chinese family caregivers are unlikely to disclose diagnosis and prognosis to end-of-life patients. They believe that patients' awareness of poor prognosis can impair patients' well-being [28]. The family unit caregivers may even request doctors to withhold the truth from patients [29]. Data inadequacy can lead to inaccurate expectations in patients and hinder ACP.

In our written report, majority of patients and a few family caregivers also preferred doctor-centered conclusion making, which is attributed to a full trust in doctors. Culturally, older Chinese perceive doctors' opinions as accented [xxx], in the sense that doctors should take 'last words' in clinical routine [31, 32]. Furthermore, these patients and family unit caregivers considered themselves as laymen who cannot make the 'best' medical decisions. They tended to leave treatment decisions to discretions of doctors [33]. As a result, both patients and family members were less likely to participate in ongoing ACP process.

Cognitive and emotional barriers to give-and-take

Consistent with a Canadian health care professional survey [19], avoidance of expiry feet discouraged our palliative patients from discussion. Additionally, under collectivism in Chinese society, patients may perceive themselves as a brunt to their families. The Chinese patients tend to prioritize family interests over cocky-interests [34]. Moreover, collectivism may induce patients' unwillingness to express their own wish and preference [35], which further keeps patients from decision making. Equally a event, end-of-life treatments could exist hardly aligned with patients' individual preferences and values.

Lack of readiness and sensation of early on word

This study reaffirms that ACP is not widely recognized by the public of Hong Kong. Surprisingly, a family unit caregiver had not even considered initiating word, due to a lack of awareness of impending death. A patient also did non recognize the opportunity for end-of-life decision making prior to mental incapability. These findings conspicuously point limited awareness of early cease-of-life discussion and decision making. Similarly, a local phone survey reveals that less than 10% of Hong Kong full general population had heard of and understood what AD was [36]. Poor noesis of seriously ill patients and their family caregivers can hinder the ACP implementation and Advertisement documentation.

Unprepared healthcare professionals and healthcare organization

From perspectives of healthcare professionals, "difficulty in accepting a poor prognosis" (emotional aspect) and "difficulty in understanding the limitations and complications of life-sustaining treatments" (informational aspect) amongst patients and family members are the most significant barriers to goals of care discussion [19, 21, 37]. On the other mitt, patients and family unit members in the present study perceived emotional and advisory support from healthcare professionals every bit insufficient. Healthcare professionals may non know what to say, how to address fear and other emotions, and how to show empathy appropriately [38]. A Hong Kong local survey shows that healthcare workers have a low competence required to cope with emotional and existential challenges from decease piece of work, including palliative care, advance care planning give-and-take and bereavement counselling [7]. They may show discomfort in against failure when they cannot cure patients. This is especially common for prognostication of patients with non-malignant concluding illnesses.

Last but not to the lowest degree, this study reveals that factors hindering ACP may extend to the entire health system. Every bit patients' preferences may change over time, ACP has to be ongoing and require multiple sessions to consummate. All the same, our patients often saw different doctors in each consultation. Hence, they were unlikely to develop a continuous relationship with the aforementioned doctors. Given the lack of ACP documentation revealed in the clinical record review, patient intendance was fragmented. This may in plough impede implementation of ACP [39]. Aggravated by a brusque contact time with healthcare professionals specially doctors, ongoing ACP was farther unlikely to be initiated [40].

Written report limitations and farther study

Our qualitative findings were generated from experience of patients receiving palliative day care services and their family caregivers. The findings may not be generalizable to those receiving other types of care including intensive care units. Even so, the richness of private experiences and views on both palliative and curative treatments tin provide a deep insight into treatment decision making and discussion. Besides, referral from the nurses working in the centre might lead to selection bias. Further studies should recruit patients of heterogeneous characteristics in different settings in social club to investigate if the factors hindering ACP uptake identified in this report apply to other palliative besides as non-palliative settings.

Conclusions

This study identifies factors hindering ACP uptake amidst seriously ill patients in Hong Kong. From unique perspectives of health service users, the barriers could be related to ane) limited patients' participation in autonomous determination making, 2) Cognitive and emotional barriers to discussion, 3) lack of readiness and awareness of early give-and-take, and four) unprepared healthcare professionals and healthcare system. These findings better our agreement of patients' and families's perspectives and signal opportunities to facilitate ACP uptake through a series of quality improvement initiatives. To raise chapters among healthcare and social workers, office play and drama centering on ordinarily occurring end-stage disease scenarios in hospitals may assist illustrate unlike intendance options and means to initiate discussion. Another initiative is to run small groups involving terminate-of-life patients and their family members separately or together, to innovate the topic in a non-threatening mode. This may enhance their awareness and readiness of early discussions. An important point is providing emotional support to patients and families during such discussions. Our findings may inform further interventional studies on strengthening ACP and finish-of-life advice in a tailored arroyo for Hong Kong or Chinese population.

With earlier and effective ACP uptake, it is believed that seriously sick patients tin make informed decisions and receive intendance aligned with their individual preferences, leading to a higher quality of life and expiry.

Availability of data and materials

The dataset analyzed in this study is available from the corresponding writer on reasonable asking.

Abbreviations

ACP:

Advance care planning

AD:

Advance directive

References

1. Department, Patient Rubber & Risk Management Sectionalisation, Quality & Safety, Hospital Authorization. HA guidelines on advance intendance planning; 2019.

   Google Scholar

2. Lum Hard disk drive, Sudore RL. Advance intendance planning and goals of intendance communication in older adults with cardiovascular affliction and multi-morbidity. Clin Geriatr Med. 2016;32:247–sixty. https://doi.org/10.1016/j.cger.2016.01.011.

   Article  PubMed  PubMed Key  Google Scholar

3. Sinuff T, Dodek P, You JJ, Barwich D, Tayler C, Downar J, et al. Improving end-of-life communication and decision making: the development of a conceptual framework and quality indicators. J Pain Symptom Manag. 2015;49:1070–80.

   Article  Google Scholar

4. The World Health Organization. WHO definition of palliative intendance; 2018. https://www.who.int/cancer/palliative/definition/en/.

   Google Scholar

5. Blackford J, Street A. Is an accelerate care planning model feasible in community palliative care? A multi-site action research arroyo. J Adv Nurs. 2012;68:2021–33. https://doi.org/x.1111/j.1365-2648.2011.05892.10.

   Commodity  PubMed  Google Scholar

6. Gramling R, Norton SA, Ladwig S, Metzger One thousand, DeLuca J, Gramling D, et al. Direct observation of prognosis communication in palliative care: a descriptive study. J Pain Symptom Manag. 2013;45:202–12. https://doi.org/10.1016/j.jpainsymman.2012.02.004.

   Article  Google Scholar

7. Cheung JTK, Au DWH, Chan WCH, Chan JHY, Ng 1000, Woo J. Cocky-competence in death piece of work among health and social care workers: a region-wide survey in Hong Kong. BMC Palliat Care. 2018;17:65.

   Article  Google Scholar

8. CUHK Jockey Club Institute of Ageing. Study on AgeWatch Index for Hong Kong 2016 and Hong Kong Elder Quality of Life Index. The Hong Kong Jockey Club; 2018. https://world wide web.ioa.cuhk.edu.hk/images/content/community_outreach/AgeWatch_Index/AgeWatch_Index_Report_for_HK_Yr2016.pdf.

9. The Economist Intelligence Unit. The 2015 quality of decease index: ranking palliative intendance across the world; 2015. http://www.eiuperspectives.economist.com/sites/default/files/2015. EIU Quality of Death Index Oct 29 FINAL.pdf.

   Google Scholar

10. McInerney DJJ. The patient self-determination human activity. Advance directives available to Minnesota patients. Minn Med. 1992;75:27–9.

    PubMed  Google Scholar

11. Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle T. Clan betwixt accelerate directives and quality of end-of-life intendance: a national report. J Am Geriatr Soc. 2007;55:189–94.

    Article  Google Scholar

12. Ott BB. Advance directives: the emerging trunk of inquiry. Am J Crit Intendance. 1999;8:514–ix.

    CAS  Article  Google Scholar

13. Silveira MJ, Kim SYH, Langa KM. Advance directives and outcomes of surrogate decision making earlier expiry. North Engl J Med. 2010;362:1211–8.

    CAS  Article  Google Scholar

14. Chan CWH, Wong MMH, Choi KC, Chan HYL, Chow AYM, Lo RSK, et al. What patients, families, health professionals and hospital volunteers told us about advance directives. Asia-Pacific J Oncol Nurs. 2019;6:72–vii. https://doi.org/10.4103/apjon.apjon_38_18.

    Article  Google Scholar

15. Zhang H, Lin South, Gao T, Zhong F, Cai J, Sun Y, et al. Association between sarcopenia and metabolic syndrome in middle-aged and older not-obese adults: a systematic review and meta-analysis. Nutrients. 2018;10:364.

    Commodity  Google Scholar

16. Lau KS, Tse DMW, Tsan Chen TW, Lam PT, Lam WM, Chan KS. Comparing noncancer and cancer deaths in Hong Kong: a retrospective review. J Hurting Symptom Manag. 2010;xl:704–14.

    Commodity  Google Scholar

17. Hu West-Y, Huang C-H, Chiu T-Y, Hung Due south-H, Peng J-M, Chen C-Y. Factors that influence the participation of healthcare professionals in advance care planning for patients with terminal cancer: a nationwide survey in Taiwan. Soc Sci Med. 2010;seventy:1701–4. https://doi.org/10.1016/j.socscimed.2010.02.011.

    Article  PubMed  Google Scholar

18. Lovell A, Yates P. Advance care planning in palliative intendance: a systematic literature review of the contextual factors influencing its uptake 2008-2012. Palliat Med. 2014;28:1026–35.

    Article  Google Scholar

19. You JJ, Downar J, Fowler RA, Lamontagne F, Ma IWY, Jayaraman D, et al. Barriers to goals of care discussions with seriously ill hospitalized patients and their families: a multicenter survey of clinicians. JAMA Intern Med. 2015;175:549–56.

    Commodity  Google Scholar

20. You JJ, Dodek P, Lamontagne F, Downar J, Sinuff T, Jiang X, et al. What really matters in end-of-life discussions? Perspectives of patients in hospital with serious illness and their families. CMAJ. 2014;186:E679–87.

    Article  Google Scholar

21. Yous JJ, Aleksova North, Ducharme A, MacIver J, Mielniczuk Fifty, Fowler RA, et al. Barriers to goals of care discussions with patients who take advanced heart failure: results of a multicenter survey of infirmary-based cardiology clinicians. J Card Neglect. 2017;23:786–93.

    Article  Google Scholar

22. The Jockey Club Terminate-of-Life Community Care Project. Innovation, impact: the Foundation of Community-based finish-of-life Intendance in Hong Kong; 2019.

    Google Scholar

23. Saunders B, Sim J, Kingstone T, Bakery Southward, Waterfield J, Bartlam B, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant. 2018;52:1893–907. https://doi.org/ten.1007/s11135-017-0574-8.

    Article  PubMed  PubMed Central  Google Scholar

24. TO North, Wilson K, Derrick CJ, Mukherjee Northward. The utilize of focus group word methodology: insights from two decades of awarding in conservation. Methods Ecol Evol. 2018;9:twenty–32. https://doi.org/ten.1111/2041-210X.12860.

    Commodity  Google Scholar

25. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24:105–12. https://doi.org/10.1016/j.nedt.2003.10.001.

    CAS  Article  PubMed  Google Scholar

26. Anney VN. Ensuring the quality of the findings of qualitative research: looking at trustworthiness criteria. J Emerg Trends Educ Res Policy Stud. 2014;5:272–81.

    Google Scholar

27. Chen Ten, Fan R. The family and harmonious medical decision making. Cherishing an Appropr confucian moral Balanc. 2010;35:573–86. https://doi.org/10.1093/jmp/jhq046.

    Commodity  Google Scholar

28. Chan WCH. Being enlightened of the prognosis: how does information technology chronicle to palliative care patients' anxiety and communication difficulty with family members in the Hong Kong Chinese context? J Palliat Med. 2011;xiv:997–1003.

    Article  Google Scholar

29. Wang XS, Di LJ, Reyes-Gibby CC, Guo H, Liu SJ, Cleeland CS. End-of-life care in urban areas of Communist china: a survey of 60 oncology clinicians. J Pain Symptom Manag. 2004;27:125–32.

    Commodity  Google Scholar

30. Bowman KW, Singer PA. Chinese seniors' perspectives on end-of-life decisions. Soc Sci Med. 2001;53:455–64.

    CAS  Commodity  Google Scholar

31. Brown RF, Shuk E, Leighl N, Butow P, Ostroff J, Edgerson S, et al. Enhancing determination making near participation in cancer clinical trials: evolution of a question prompt listing. Back up Care Cancer Off J Multinatl Assoc Support Intendance Cancer. 2011;nineteen:1227–38.

    Google Scholar

32. Hajizadeh Due north, Uhler LM, Perez Figueroa RE. Understanding patients' and doctors' attitudes about shared decision making for advance intendance planning. Heal Expect Int J Public Particip Heal Care Heal Policy. 2015;xviii:2054–65.

    Google Scholar

33. Chan HYL, Pang SMC. Readiness of Chinese frail old age home residents towards terminate-of-life care conclusion making. J Clin Nurs. 2011;xx(9–10):1454–61. https://doi.org/10.1111/j.1365-2702.2010.03670.10.

    Article  PubMed  Google Scholar

34. Xu A, Xia Y. The changes in mainland Chinese families during the social transition: a critical analysis. J Comp Fam Stud. 2014;45:31–53.

    Article  Google Scholar

35. Tsai JL, Miao FF, Seppala Due east, Fung HH, Yeung DY. Influence and aligning goals: sources of cultural differences in platonic bear on. J Pers Soc Psychol. 2007;92:1102–17.

    Article  Google Scholar

36. Chung RY-N, Wong EL-Y, Kiang N, Chau PY-K, Lau JYC, Wong SY-South, et al. Knowledge, attitudes, and preferences of advance decisions, end-of-life care, and identify of care and death in Hong Kong. A population-based telephone survey of 1067 adults. J Am Med Dir Assoc. 2017;xviii:367.e19–27. https://doi.org/10.1016/j.jamda.2016.12.066.

    Article  Google Scholar

37. Ethier J-L, Paramsothy T, You lot JJ, Fowler R, Gandhi South. Perceived barriers to goals of intendance discussions with patients with advanced cancer and their families in the ambulatory setting: a multicenter survey of oncologists. J Palliat Care. 2018;33:125–42.

    Article  Google Scholar

38. Banerjee SC, Manna R, Coyle N, Shen MJ, Pehrson C, Zaider T, et al. Oncology nurses' advice challenges with patients and families: a qualitative study. Nurse Educ Pract. 2016;16:193–201.

    Article  Google Scholar

39. Rhee JJ, Zwar NA, Kemp LA. Uptake and implementation of advance care planning in Australia: findings of central informant interviews. Aust Health Rev. 2012;36:98–104.

    Commodity  Google Scholar

40. Larson DG, Tobin DR. End-of-life conversations: evolving practice and theory. JAMA. 2000;284:1573–8.

    CAS  Article  Google Scholar

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Acknowledgements

Non applicative.

Funding

This study was funded by the Hong Kong Jockey Social club Charities Trust. The funder did not participate in the design of the written report design, information drove, analysis and interpretation and manuscript preparation.

Author information

Affiliations

1. Institute of Ageing, The Chinese University of Hong Kong, Hong Kong SAR, Cathay

   Johnny T. Grand. Cheung, Doreen Au, Anthony H. F. Ip, Jenny Chan, Kenway Ng, Lok Cheung, Jacqueline Yuen & Jean Woo

2. Department of Medicine & Geriatrics, Shatin Hospital, Hong Kong SAR, China

   Elsie Hui

3. Department of Medicine & Geriatrics, Tai Po Hospital, Hong Kong SAR, China

   Jenny Lee

4. Section of Medicine & Therapeutics, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong SAR, China

   Jacqueline Yuen, Raymond Lo & Jean Woo

Contributions

DA, EH, JL, RL and JW were responsible for study pattern. KN and LC conducted private interviews and focus grouping for information collection. J T.K. C, A H.F., JC and JY analyzed data. JC drafted the manuscript while other co-authors critically revised the manuscript. All authors take read and approved the manuscript.

Corresponding author

Correspondence to Johnny T. K. Cheung.

Ethics declarations

Ethics approval and consent to participate

The study was performed in accordance with the Declaration of Helsinki. Ethics approval was granted by The Joint Chinese University of Hong Kong – New Territories East Cluster Clinical Research Ideals Commission. Written consent was obtained earlier the start of the survey.

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Not applicable.

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The authors declare that they take no competing interests.

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Cheung, J.T.K., Au, D., Ip, A.H.F. et al. Barriers to advance care planning: a qualitative written report of seriously ill Chinese patients and their families. BMC Palliat Care xix, 80 (2020). https://doi.org/10.1186/s12904-020-00587-0

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• Received: 15 May 2019

• Accepted: 01 June 2020

• Published: 08 June 2020

• DOI : https://doi.org/10.1186/s12904-020-00587-0

Keywords

• End of life care
• Palliative care
• Accelerate directives
• Do-not-endeavor cardiopulmonary resuscitation

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