Advance Care Planning

( Rita Benya Adriani )

The world's elderly population is increasing. In 2018, the population aged over 64 years has

exceeded the population of children under 5 years of age. In Indonesia, the elderly population is

0.06% of the entire population of Indonesia, increasing 0.01% from 10 years ago (Ritchie, & Roser,

2019). Changes in the age structure of the population will affect various aspects of society, one of

which is health services, especially palliative care. End-of-life care, as a part of palliative care, is a

patient-centred approach to care, where this care emphasizes the value of life and treatment

preferences. Thus, the patient's value of life and treatment preferences must be known, informed

and accessible to the healthcare team when a decision has been made (Heyland, 2020).

Legal proxy is usually the one who makes decisions that can cause distress for other family

members, because it is influenced by their level of knowledge or proxy only follows the choice of

her/himself. In addition, family members often rely more on physicians to make decisions. All of this

will cause distress or conflict in family members (Carr & Luth, 2017). Advance care planning (ACP) is

one way to deal with this issues.

Definition

ACP is a process that involves individuals, family members, and health care teams to define, discuss,

document, and review the value of life and treatment preferences for medical care and subsequent

treatment (Rietjens et al., 2017). The goals of the ACP are (Fleuren, Depla, Janssen, Huisman, &

Hertogh, 2020):

1. Respect the patient's right to autonomy

ACP supports the patient's decision on health care preferences, so that all treatment given is

based on the patient's preferences. The ACP process is useful for improving patient self-

control. In addition, the ACP also changed the responsibilities that were previously given to

family members and healthcare workers, to the patient. This will provide protection for

healthcare workers against the risk of liability and complaints from the family who have
 different views on the treatment preferences chosen by the patient. In addition, ACP is also

very supportive of self-determination (a person's ability to make decisions and manage his

own life).

2. Improve the quality of care

ACP is performed on patients with decision-making capacity. Through the ACP, the patient

will be informed about the disease and the prognosis. This allows healthcare workers to

prepare patients for conscious decision making on end-of-life care. Timely discussion of

preferences and prognosis will lead patients to accept palliative care options earlier in the

disease course. The discussion also emphasized the improvement of end-of-life services and

good death. In contrast to good death, bad death can increase emotional distress on

healthcare workers and family members.

3. Improve relationship

ACP empowers families to stand up for patients, increase relational autonomy, and achieve

more agreement on goals of care. Especially at the end of life, patients want others to

support them, so as to ease the burden of illness and physical decline. Families and friends

can show their empathy with the patient.

4. Prepare for end-of-life care

ACP's goal is to focus on finding meaning and peace of mind through discussions about the

future, for example dying the way they want. Discussing how you want to die can prepare

you emotionally for both dying and death.

5. Reducing overtreatment

ACP helps patients and healthcare professionals to avoid overtreatment. For example, giving

CPR physiologically in some patients does not provide much benefit. In addition, CPR can

also cause psychological distress on the family, or cause an undignified death. Reducing

overtreatment can have an economic impact, so ACP will reduce treatment costs without

compromising the patient's quality of life.

ACP is critical in determining the need for palliative care and end-of-life care. Another benefit is to

reduce the use of aggressive treatment and improve the quality of life before death and create a

good death. ACP also helps family members to reduce the burden of decision making, reduce anxiety

and depression, prepare for the death of a loved one, resolve family conflicts, and help cope with

grieving (Carr & Luth, 2017; Hamilton, 2017).

Advance statements in the ACP usually relate to medical treatment or social aspects. The patient

may consider refusing treatment or nursing management if at any time he loses his capacity (e.g.

unconsciousness, or impaired cognitive function). However, basic care should still be given, such as

giving food or drinks by mouth (Hamilton, 2017). Sometimes, a patient comes to the emergency

department before he or she is involved in ACP. If this happens, the patient, family, and healthcare

team usually focuses on the good death component, such as the use of hospice or palliative care

facilities, reducing the use of invasive treatments, such as NG tube or ventilator; improve sense in

decision making; desire to die at home rather than in health care facilities; as well as reducing

unwanted treatments by patients (Carr & Luth, 2017).

ACP in Asian Culture

ACP originated and developed in western culture which is quite different if applied to Asian society.

The majority of Asian people embrace Buddhism / Taoism, Islam, and Hinduism, which provide a

different perspective on life and death. Buddhists prefer to refuse life-prolonging therapy if the

patient is in poor condition. Catholics refuse to make a withdrawal of life support. Islam views that

human life is very valuable and life must be preserved as long as it can be maintained. Hindus have a

view to rejecting life-sustaining therapy and supporting patient decision-making (Cheng et al., 2020).

Religion and culture also greatly influence how Asian people communicate about end-of-life care.

People in Japan, Korea, or Taiwan rarely talks about this. Family members and doctors as decision

makers in end-of-life care are characteristics of Asian society (Cheng et al., 2020).
In Asia, only Singapore and Taiwan have ratified laws governing the Advance Directive (AD). Korea,

although it does not yet have a statutory regulation of AD, has several places for registration of AD.

Meanwhile, other countries, such as Hong Kong and Japan, only practice ACP (Cheng et al., 2020).

ACP in Indonesia is still not much developed. The only accepted ACP documentation is do-not-

resuscitated (DNR). Whereas legislation on palliative care has been issued since 2007 numbered

812/Menkes/SK/VII/2007. The law also regulates advance decisions, it is written that the healthcare

team seeks to obtain messages or patient statements, when the patient is in a competent condition,

about what should or should not be done to him if his competence then declines. This is also

supported by the existence of national guidelines for cancer palliative programs which mention this

advance decision. The palliative care team can initiate ACP while the patient is still competent,

although this ACP is not described in the legislation (Cheng et al., 2020).

Asian Patient Perspective in ACP

ACP practices are influenced by societal norms and values. Health care teams, especially in Asia, rely

on family members as decision makers. Health care teams also rarely involve patients in ACP, even

when the patient has the capacity. This is because the health care team considers that the patient is

not ready for ACP (D. Martina et al., 2021; Zhang et al., 2015).

The success of ACP in terms of patients includes knowledge, belief, willingness / unwillingness to

perform ACP.

1. Knowledge

The success of ACP begins with aspects of knowledge of disease conditions and prognosis, as

well as the concept of ACP. The lower the knowledge, the lower the patient's willingness to

be involved in ACP. Aspects of knowledge will affect belief.

2. Belief

1) Behavioural belief

Patients' belief in the benefits of ACP is a strong motivation for patients to engage in

ACP. The advantages of ACP include that ACP prioritizes patient autonomy rights,
 provides comfortable end-of-life services, reduces burdens for family members, and

facilitates understanding for family members.

2) Normative belief

There are 3 components in normative belief so that patients have a willingness to

participate in ACP, namely family support for ACP, support by the health care team, and

faith or religious belief.

3) Control belief

Changes in the mindset of ACP can occur because patients care about the complexity of

ACP and future plans, socioeconomic dependence on others, and the readiness of the

health care team to ACP.

3. Willingness / unwillingness to do ACP

Willingness/unwillingness to perform ACP is related to 3 factors: (1) who performs ACP; (2)

the start time of the ACP; (3) how the ACP is performed. The implementation will be divided

into two, (1) the patient participates actively in ACP along with family members and the

health care team; (2) engage passively, by handing over autonomy and decision-making to

family members or the health care team.

Asian Healthcare Perspective in ACP

The knowledge, attitude and experience of the health care team towards ACP greatly influences how

they initiate ACP (Diah Martina et al., 2021).

- Health care teams often perform ACP by involving family members, but not involving the

patient.

- The health care team provides more opportunities for family members to express opinions,

compared to patients. This is in contrast to western culture. Decision-making by family

members in Asian society is usually done because the patient has decreased capacity, or the

patient has expressed his wish, but this desire is against the wishes of the family. The health
 care team allows this to happen to maintain harmony between family members, a

characteristic held in Asian societies that adhere to a collectivism culture.

There are several obstacles experienced by the health care team in carrying out ACP, including the

limitations of formal education on ACP, laws and regulations, institutional support, and cultural

factors.

Asian Family Member’s Perspective in ACP

Although family members are always involved in the implementation of ACP, there are several

problems that can hinder the implementation of ACP (Ali et al., 2021).

1. Factors related to family members

Family members realized that discussing end-of-life care would cause anxiety for the patient,

and they also thought that discussing end-of-life care was very inappropriate for anyone.

Decisions on the treatment to be received can be made through consultation involving other

family members and the health care team. They assume that family members understand

the patient so that decision making will be in accordance with the patient's preferences.

2. Socio-cultural factors

Discussions about end-of-life care are also influenced by socio-cultural factors, where family

members consider it taboo and against Asian culture because they have great respect for

elderly. In addition, they believe that there are supernatural powers that may exist during

the discussion. This will bring bad things, and can disturb the patient.

ACP in Pandemic

The impact of the COVID-19 pandemic has raised awareness among Americans about end-of-life

care. In the state of West Virginia, hospitals have provided an advance directive format. The demand

for ACP has also doubled compared to 2015 (Funk, Moss, & Speis, 2020).

The following topics for discussion about COVID-19 can be addressed to young or healthy adults or

those who wish to become involved in the ACP:

1. Who would you like to make decisions with if something unexpected happened to you?
 2. Have you ever discussed with the person what health care you want or don't want?

Sometimes there are some people who do not want to be put on a ventilator machine for a

long time.

3. Most COVID-19 patients with severe symptoms are the elderly, but not a few are young

people or adults with severe symptoms. We can discuss if at any time you experience severe

symptoms.

During this pandemic, ACP can be done by telehealth or telephone visits. This method makes it easy

for patients and family members to make repeat visits. In addition, a multidisciplinary approach in

ACP can also be applied, because various professions such as physicians, nurses, or social workers,

can provide views on end-of-life care for patients. Telehealth or telephone can also overcome the

distance restrictions imposed by the government in dealing with COVID-19. Family members who

live outside the patient's household can participate in ACP discussions (Bender, Huang, & Raetz,

2021).

Future Directions

1. Laws and policies

The absence of legal recourse to ACPs creates confusion over the legal status of ACPs and

their implementation, leading patients and families to question the importance of ACPs. The

implementation of ACP requires support from various parties, including policies at the health

system and institutional level, which has an impact on positive changes for staff, families,

and patients towards end-of-life care.

2. Culture

The culture that exists in Asian societies makes decision making on ACP left to family

members and physicians, not to the patient. To overcome this, it is necessary to take a

cultural approach, as well as understand the social and spiritual characteristics of carrying

out ACP.

3. ACP perception and acceptance

1) Patients and family members

Educating the public is very helpful in the success of ACP, because ACP will enable

patients to set health care goals. In addition, it is necessary to educate family members

in making decisions if a patient is in a state of not having the capacity.

2) Healthcare Team

ACP's success from the healthcare team's perspective is knowledge of practical and legal

issues, as well as communication skills. One way to improve this is through educational

interventions for the health care team, as well as improving skills and attitudes towards

ACP. It is hoped that the health care team can provide better ACP qualities, by providing

correct information, providing useful advice, and showing empathy.

 DAFTAR PUSTAKA

Hannah Ritchie and Max Roser (2019) - "Age Structure". Published online at OurWorldInData.org.
Retrieved from: 'https://ourworldindata.org/age-structure' [Online Resource]

Kebijakan Perawatan Paliatif 2007. (Indonesia)

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