Advance Care Planning Among Adult Patients and Their End-of-Life Care Preferences

Abstract

To explore people’s intentions to opt for a good death when planning for their end-of-life care, this study examined the type of end-of-life care preferred by patients receiving advance care planning (ACP) consulting services for five specified clinical and disability conditions and possible factors affecting their decision-making. This cross-sectional study analyzed 1303 hospital patients and 1032 nonhospital patients who attended a clinic providing ACP consulting services. This study revealed the following two results. First, patients who were older, were female, did not have an appointed surrogate decision-maker, and were nonhospital patients had a higher intention of not receiving life-sustaining treatments (LST) or artificial nutrition and hydration (ANH) under the five specified clinical and disability conditions. Second, people who were the least willing to receive LST or ANH under the following conditions (in descending order): permanent vegetative state, severe dementia, irreversible coma, other disease conditions recognized by the central competent authority, and end-of-life stage.

Keywords

adult patient advance care planning advance decision end-of-life care preference

Introduction

To prevent patients who are receiving end-of-life care from experiencing physical pain or suffering, advance care planning (ACP) consulting services have become an important issue and have increased global focus on ACP, with attention from policy-makers, more education programs, laws and public awareness campaigns (Rietjens et al., 2021). ACP consulting services represent a process of discussion (Wang et al., 2017), and they are affected by society, culture, ethics, and policies (Robinson et al., 2012). ACP involves multiple conversations that appoint a surrogate decision-maker, identify personal values, goals, and preferences about end-of-life care, and complete advance directive documents (Lum et al., 2015). Allowing capable adults to express their willingness to receive terminal care can effectively increase the quality of end-of-life care and the satisfaction of families, thereby reducing their pressure and anxiety (DeCourcey et al., 2019; Detering et al., 2010). ACP consulting services provide people with the right to make choices and receive medical treatments in accordance with their values and wishes. These services can optimally reduce pain and maintain the dignity of patients (Dixon et al., 2018; Feng et al., 2020; Walbert, 2017).

The guidelines of the United Kingdom’s National Institute for Health and Care Excellence specify that by using ACP consulting services to review people’s needs, identify adults who may enter the end-of-life stage, and access multidepartment services and communication, an institute can ensure that patients with motor neuron diseases, dementia, and disabilities receive the appropriate form of care (United Kingdom’s National Institute for Health and Care Excellence, 2019).

Although numerous studies have discussed the signing completion rate of ACP documents and the characteristics of those who signed ACP agreements, (Chung et al., 2017; Kim et al., 2019; Lee et al., 2018; Ottoboni et al., 2019; Park et al., 2019), few have discussed the content of these agreements. At the time of writing this report, the literature on the choices and degree of acceptance of patients who signed ACP agreements for specific clinical conditions and disabilities is still lacking. Thus, the purpose of the present study was to explore the end-of-life care model expected by patients who were receiving ACP consulting services for five specified clinical and disability conditions; it also discusses the factors that may affect their decisions.

Materials and Methods

Study Design and Subjects

At the end of 2015, the Patient Right to Autonomy Act was legislated, allowing medical facilities to provide ACP counseling in Taiwan. Accordingly, Taipei City Hospital offered ACP sessions for outpatients in its seven branches to provide ACP counseling and make advance directive (AD) notes. ADs are official documents that indicate the intentions of patients with specific clinical conditions and whether they will accept or reject life-sustaining treatment (LST) or artificial nutrition and hydration (ANH).

The study subjects were at least 20 years old with legal capacity and received ACP counseling from January 2019 to February 2020 at Taipei City Hospital. The protocol for this study was approved by the Taipei City Hospital Research Ethics Committee (Approval no.: TCHIRB-10,904,001-E). We conducted a cross-sectional study using secondary data from Taipei City Hospital. The purpose of this study was to explore the possible influencing factors of adults who received ACP counseling and whether patients with different primary characteristics made different choices regarding nonacceptance or acceptance of LST or ANH under the five specified clinical conditions.

Data Collection and Definitions

For this study, secondary data were acquired from ACP counseling records and medical charts. Two kinds of data were analyzed in the study. First, ACP counseling data were collected from patients who received ACP counseling from January 2019 to February 2020, including the pre-ACP checklist and signed ADs. The primary data of the willingness to receive medical care were categorized as follows: (1) I am unwilling to receive LST or ANH; (2) I hope to receive LST/ANH for a specific period of time; however, my appointed surrogate decision-maker could express his or her opinion to stop my LST/ANH at any time during that period; (3) My surrogate decision-maker is authorized to make decisions for me; (4) I am willing to receive LST/ANH; (5) I have not decided. To simplify the statistical analysis, “being unwilling to receive LST/ANH” was labeled “1”. In contrast, the other categories were labeled “2”. Second, ACP counseling data also included basic personal information, including age, sex, religious beliefs, and medical diagnoses of mental and physical disabilities or severe illness.

The five specific clinical conditions were being an end-of-life patient, being in an irreversible coma, being in a permanent vegetative state, having severe dementia, and experiencing unbearable pain due to other disease conditions recognized by the central competent authority.

Statistical Analysis

SPSS was used to organize and debug the data. Descriptive statistics are used to describe the distribution of the sample as the rate and frequency for categorical variables and the average and standard deviation for continuous variables. T tests and chi-square tests were used to examine the correlation of independent variables and the willingness to receive LST and ANH. Logistic regression analysis was used to examine the correlation of independent variables and the willingness to receive LST and ANH after controlling for the influence of all kinds of variables; additionally, models were used to calculate the odds ratio as well as its 95% confidence interval or p value, and the significance level was p < 0.05.

Results

Analysis of Basic Characteristics

A total of 2500 patients received ACP counseling at Taipei City Hospital from January 2019 to February 2020. A total of 2335 patients were included in this study to analyze the influencing factors of ACP counseling, excluding 35 patients who received ACP counseling more than once, 35 hospital employees, and 95 hospital volunteers.

Among the 2335 patients, 1303 (52.9%) were patients at Taipei City Hospital, while 1032 (41.9%) were not. The patients were mainly female (1,503, 64.4%), and 977 (41.8%) were older than 65 years of age. In addition, 41.6% of the patients were mainly practicing Buddhism and Taoism. In addition, there were 64 (2.7%) low- and middle-income household patients, 212 (9.1%) patients with a disability or major injury, and 249 (10.7%) patients with appointed health care attorneys (Table 1).

Table 1.

Characteristics of Patients in ACP.

	Total N = 2335		Hospital Patients N = 1303		Non-hospital Patients N = 1032		p value
Gender
Male	832	(35.6%)	475	(36.5%)	357	(34.6%)	0.374
Female	1503	(64.4%)	828	(63.5%)	675	(65.4%)
Age
20–49	478	(20.5%)	218	(16.7%)	260	(25.2%)	<0.001
50–64	880	(37.7%)	468	(35.9%)	412	(39.9%)
≥65	977	(41.8%)	617	(47.4%)	360	(34.9%)
Religious belief
Buddhism or taoism	971	(41.6%)	523	(40.1%)	448	(43.4%)	0.117
Christianity	222	(9.5%)	118	(9.1%)	104	(10.1%)
Others	1142	(48.9%)	662	(50.8%)	480	(46.5%)
Low and middle-income household
Yes	64	(2.7%)	35	(2.7%)	29	(2.8%)	0.956
No	2271	(97.3%)	1268	(97.3%)	1003	(97.2%)
Mental and physical disability or severe illness
Yes	212	(9.1%)	149	(11.4%)	63	(6.1%)	<0.001
No	2123	(90.9%)	1154	(88.6%)	969	(93.9%)
Authorized surrogate decision-maker
Yes	249	(10.7%)	146	(11.2%)	103	(10.0%)	0.376
No	2086	(89.3%)	1157	(88.8%)	929	(90.0%)

The Correlation of Sociodemographic Data and Willingness to Engage in ACP

The analysis of patients who were unwilling to receive LST or ANH under the five clinical conditions and their associated sociodemographic factors is presented in Table 2. The unwillingness of females was higher than that of males for all five clinical conditions. The unwillingness to receive LST and ANH increased with age in different age groups under the conditions of irreversible coma (p = 0.037; p = 0.028), other diseases recognized by the central competent authority (p = 0.003; p = 0.004), and end-of-life stage (p = 0.001; p < 0.001), and the unwillingness of ANH in advanced dementia (p = 0.046). Regarding the source of the cases, the unwillingness under the five clinical conditions was significantly higher in nonhospital patients than hospital patients. The unwillingness of middle- and low-income families was generally higher than that of high-income families under the five clinical conditions and was notably significantly higher in the condition of other disease conditions recognized by the central competent authority (p = 0.035; p = 0.034). When analyzing the variable of appointed surrogate decision-makers, the unwillingness to receive LST or ANH was significantly lower in those with an appointed surrogate decision-maker.

Table 2.

Patients’ Unwillingness to Receive LST or ANH Under the Five Clinical Conditions and its Possible Influencing Factors.

	n	End-Of-Life Patients		Irreversible Coma		Permanent Vegetative State		Severe Dementia		Other Disease Conditions Recognized by the Central Competent Authority
	n	LST	ANH	LST	ANH	LST	ANH	LST	ANH	LST	ANH
Gender
Male	832	83.3%	83.4%	87.7%	87.6%	88.7%	88.5%	88.3%	87.6%	84.6%	84.5%
Female	1503	89.1%	89.2%	90.5%	90.5%	91.5%	91.3%	91.3%	91.0%	89.1%	89.1%
p value		<0.001	<0.001	0.045	0.037	0.034	0.033	0.026	0.013	0.002	0.002
Age
20–49	478	82.2%	81.4%	86.6%	86.4%	88.3%	87.7%	87.9%	86.8%	83.1%	83.1%
50–64	880	87.5%	88.2%	89.4%	89.4%	90.7%	90.6%	90.3%	90.0%	87.8%	88.1%
≥65	977	88.9%	89.0%	91.0%	91.0%	91.4%	91.3%	91.3%	91.0%	89.4%	89.0%
p value		0.001	<0.001	0.037	0.028	0.158	0.083	0.116	0.046	0.003	0.004
Source
Hospital patients	1303	85.4%	85.0%	87.9%	87.9%	89.2%	88.9%	88.9%	88.4%	86.0%	85.8%
Non-hospital patients	1032	89.1%	89.8%	91.6%	91.5%	92.2%	92.0%	92.0%	91.5%	89.3%	89.5%
p value		0.011	0.001	0.005	0.006	0.018	0.018	0.015	0.019	0.019	0.008
Religious belief
Buddhism or taoism	971	88.2%	88.4%	90.1%	90.3%	91.5%	91.3%	91.2%	90.7%	88.6%	89.0%
Christianity	222	87.4%	88.3%	88.7%	89.2%	88.7%	89.2%	88.7%	89.2%	87.8%	87.4%
Others	1142	86.0%	85.9%	89.1%	88.8%	90.0%	89.6%	89.7%	89.1%	86.5%	86.2%
p value		0.331	0.210	0.711	0.517	0.344	0.332	0.348	0.429	0.359	0.150
Low and middle-income
Yes	64	95.3%	95.3%	96.9%	96.9%	96.9%	96.9%	96.9%	96.9%	96.9%	96.9%
No	2271	86.8%	86.9%	89.3%	89.3%	90.3%	90.1%	90.0%	89.6%	87.2%	87.2%
p value		0.07	0.074	0.081	0.08	0.121	0.111	0.109	0.09	0.035	0.034
Mental and physical disability or severe illness
Yes	212	87.3%	85.8%	90.1%	89.6%	91.0%	91.0%	91.0%	90.6%	89.6%	88.7%
No	2123	87.0%	87.3%	89.4%	89.4%	90.4%	90.2%	90.2%	89.7%	87.3%	87.3%
p value		0.998	0.626	0.861	1	0.872	0.787	0.771	0.776	0.382	0.648
Authorized surrogate decision-maker
Yes	249	72.3%	73.1%	76.7%	75.9%	79.9%	78.7%	79.1%	77.9%	71.9%	71.5%
No	2086	88.8%	88.8%	91.0%	91.1%	91.8%	91.7%	91.6%	91.2%	89.4%	89.4%
p value		<0.001	<0.001	<0.001	<0.001	<0.001	<0.001	<0.001	<0.001	<0.001	<0.001

Note. LST = life-sustaining treatment; ANH = artificial nutrition and hydration.

Table 3 displays the logistic regression results of patients' unwillingness to receive LST or ANH under the five clinical conditions concerning demographic variables. Females were unwilling to receive LST or ANH under the five clinical conditions at a rate 1.317–1.628 times that of males. For the five clinical conditions, the unwillingness to receive LST or ANH was 1.634–2.206 times greater in the subgroup of patients aged 65 years and older than in the subgroup of those aged 20–49 years. Except for receiving LST for the conditions of irreversible coma, a permanent vegetative state, or severe dementia, the unwillingness to receive LST or ANH in the subgroup aged 50–64 years was 1.431–1.861 times that of the subgroup aged 20–49 years for most clinical conditions. Nonhospital patients were 1.452–1.662 times more unwilling to receive LST or ANH than hospital patients for all five clinical conditions. Under the condition of other disease conditions recognized by the central competent authority and end-of-life stage, the unwillingness of low- and middle-income household participants to receive LST or ANH was significantly higher than that of high-income household participants (3.409–5.122). Under the five clinical conditions, those with appointed surrogate decision-makers were significantly less likely to refuse LST or ANH (OR = 0.295–0.357) than those without appointed surrogate decision-makers.

Table 3.

Logistic Regression of Factors Influencing Patients' Unwillingness to Receive LST or ANH Under the Five Clinical Conditions.

	End-Of-Life Patients				Irreversible Coma				Permanent Vegetative State				Severe Dementia				Other Disease Conditions Recognized by the Central Competent Authority
	LST		ANH		LST		ANH		LST		ANH		LST		ANH		LST		ANH
	OR	p value	OR	p value	OR	p value	OR	p value	OR	p value	OR	p value	OR	p value	OR	p value	OR	p value	OR	p value
Gender (“male” as the reference group)
Female	1.626	<0.001	1.628	<0.001	1.317	0.050	1.325	0.044	1.351	0.039	1.345	0.040	1.366	0.030	1.402	0.016	1.473	0.003	1.479	0.003
Age (”20–49” as the reference group)
50–64	1.616	0.003	1.861	<0.001	1.399	0.058	1.431	0.043	1.365	0.096	1.436	0.049	1.367	0.089	1.449	0.038	1.574	0.006	1.622	0.003
≥65	1.996	<0.001	2.206	<0.001	1.782	0.001	1.825	0.001	1.587	0.014	1.667	0.006	1.634	0.008	1.728	0.002	1.938	<0.001	1.908	<0.001
Source (hospital patient as the reference group)
Non-hospital patient	1.473	0.003	1.662	<0.001	1.580	0.002	1.556	0.002	1.475	0.010	1.478	0.009	1.490	0.007	1.471	0.008	1.452	0.005	1.498	0.003
Religious belief (buddhism or taoism as the reference group)
Christianity	0.866	0.530	0.928	0.752	0.809	0.382	0.826	0.439	0.693	0.136	0.734	0.215	0.710	0.162	0.791	0.342	0.867	0.542	0.797	0.330
Others	0.841	0.196	0.816	0.132	0.922	0.579	0.867	0.328	0.863	0.337	0.832	0.227	0.852	0.291	0.849	0.270	0.844	0.213	0.785	0.077
Low and middle-income (“no” as the reference group)
Yes	3.427	0.040	3.409	0.041	4.037	0.055	4.081	0.053	3.621	0.076	3.725	0.070	3.735	0.069	3.939	0.059	5.033	0.026	5.122	0.025
Mental and physical disability or severe illness (“no” as the reference group)
Yes	0.966	0.876	0.838	0.409	1.021	0.932	0.958	0.858	1.032	0.901	1.050	0.850	1.063	0.810	1.050	0.845	1.180	0.489	1.067	0.780
Authorized surrogate decision-maker (“no” as the reference group)
Yes	0.325	<0.001	0.333	<0.001	0.322	<0.001	0.305	<0.001	0.357	<0.001	0.336	<0.001	0.349	<0.001	0.341	<0.001	0.302	<0.001	0.295	<0.001

Note. LST = life-sustaining treatment; ANH = artificial nutrition and hydration.

Discussion

The present study investigated 2335 people who visited an ACP counseling clinic and signed the relevant agreement document for the end-of-life care model that they wanted to receive under specific clinical and disability conditions. The following key findings were obtained: (1) Under five specified clinical and disability conditions, the people who were the least willing to receive LST or ANH under the following conditions (in descending order): permanent vegetative state, severe dementia, irreversible coma, disease conditions recognized by the central competent authority, and end-of-life stage. (2) Patients who were older, were female, did not have appointed surrogate decision-makers, and were nonhospital patients had a higher intention of not receiving LST or ANH.

A systematic review paper stated that the barriers that hinder the promotion of ACP counseling can be classified into four levels, namely, the individual (patient’s attitude, religious beliefs, knowledge, and behavior), interpersonal (family and friends), provider (provider’s knowledge and attitude), and system (contact, process, and care model) levels (Risk et al., 2019). Among families who observe traditional Chinese customs, medical decisions are typically highly patriarchal. Medical decision-makers are often not the patient themselves. Clinical physicians are pressured by the family members of a patient with respect to medical decisions. They cannot administer palliative medical treatments and will try to prolong a patient’s life to the fullest extent, which involves life-prolonging measures that cause pain for a patient and deprive them of dignity (Tang et al., 2009). Because of population aging and changes to family structures, the participation of family members in a patient’s medical care is becoming increasingly complex and requires improved communication methods (Thoresen & Lillemoen, 2016). Among patients whose illnesses are expected to worsen and among end-of-life patients, ACP counseling is regarded as a process for increasing their autonomous communication (Thoresen & Lillemoen, 2016) to achieve an agreement between patients and their decision-makers (Briggs et al., 2004), reduce physician–patient conflicts, and increase medical treatments that respect patients’ wishes Brinkman-Stoppelenburg et al., 2014). ACP counseling also addresses the traditional Chinese taboo of talking about death (Deng et al., 2020).

Feminist research on the gender roles of men also found that men may be socialized in childhood to be less willing to share their feelings or problems and to maintain a strong sense of dignity, leading them to not be able to admit that they are struggling with inner pain because expressing emotions is a behavior of the weak. A British study found that the rate of medical consultation for men is 32% lower than that of women, and the consultation rate for men to receive evaluations for antidepressant prescriptions is 8% lower than that of women (Wang et al., 2013). This means that men may need more help from ACP medical teams when promoting advanced medical decisions in the future, such as helping them understand their own emotional, mental, and health conditions or enabling them to meet their end-of-life care needs.

ACP consultation involves discussions about various clinical scenarios, and patients must understand how these scenarios affect their decisions. Another finding of the present study is that under specific clinical and disability conditions, people who were the least willing to receive LST or ANH under the following conditions (in descending order): severe dementia, irreversible coma, disease conditions recognized by the central competent authority, and end-of-life stage. This finding may be related to the despair (hope) felt by patients and their survival rate (Cohen et al., 2021). Patients who experienced hopeless were less willing to receive LST or ANH.

ACP and ADs enable patients to face the final journey with dignity. This study showed that the unwillingness to receive LST was higher in nonhospital patients, which showed that the patients who came purposefully to Taipei City Hospital were strongly determined. However, Taiwanese people do not yet have a common understanding of ACP and ADs. Traditionally, there is an issue about filial piety in Chinese family that the patient should being rescued until rescue didn’t work, if they didn’t do the procedure that they will be unfilial. To overcome this deviation, it is necessary to increase the promotion of ACP to achieve social learning.

ACP is especially important during the COVID-19 pandemic. New challenges and opportunities for ACP have arisen during the COVID-19 pandemic (Bender et al., 2021). APC must be prioritized during and after COVID-19. The pandemic further enhances the widespread and urgent need to participate in ACP discussions for all adults. ACP discussions are importance to reduce the need to ration limited medical resources during emergencies (Farrell et al., 2020). Due to the high morbidity and mortality and many uncertainties associated with COVID-19 illness, it would be beneficial to encourage all adult patients to discuss and document their wishes for end-of-life care. ACP is an important step in identifying an individual’s preferences for treatment options and end-of-life care, especially during a medical crisis.

The present study has several research limitations. First, this study has limited generalizability, and the research was conducted in a single hospital; thus, its findings may not be generalized to other hospitals. Furthermore, different medical teams may adopt different counseling methods, which may affect the results. However, to reduce this effect, the investigated medical teams attended a comprehensive educational training course before they provided counseling services.

Conclusion

Clinical physicians must carefully evaluate the clinical conditions of patients to determine the most suitable treatment methods. They must also respect the opinions of these patients and their families to increase the quality of life of patients who are receiving end-of-life care. Promoting ACP counseling services can increase mutual understanding among physicians, patients, and families, allowing patients to choose to face death with dignity and preventing the use of ineffective and intrusive treatments.

Footnotes

Data Availability

The data that support this study cannot be publicly shared due to ethical or privacy concerns.

Declaration of Conflicting Interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Chia-Jen Liu

Author Biographics

Chia-Jen Liu, PhD, is the Secretary-general of Taiwan International Compassionate Community Development Association and an Adjunct Assistant Professor at University of Taipei. His main research interests include health and welfare policy, community-based integrated care, and healthcare management.

Chun-Yi Yang is Chief of Social Work Department of Taipei City Hospital. Her main research interests include medical social work, long-term care, and advance care planning.

Ming-Hsuan Hsieh is a PhD student at Fu Jen Catholic University and she works as the Director of Development and Planning Center at Taipei City Hospital.

Chih-Kuang Liu, PhD is a Chair Professor of Graduate Institute of Business Administration at Fu Jen Catholic University. He is specializing in healthcare quality management, healthcare performance management, and strategic management of healthcare.

Ming-Chih Chen, PhD is a Professor and the Director of Graduate Institute of Business Administration at Fu Jen Catholic University. Her main research interests include production and operation management, and total quality management.

Sheng-Jean Huang, MD, is an Associate Professor at Surgical Department, School of Medicine, National Taiwan University. His research focuses neurotrauma, neurointensive care, integrated community/ home-based health care, and palliative care.

Te-Chun Yeh, PhD, works at the Taipei City Hospital and is an Adjunct Assistant Professor of the Taipei University of Marine Technology. His research interests include biostatistics and health policy.

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