Medical Humanities, Ethics and Legal Considerations in Palliative

Care: Toward a Good Clinical Practice in End of Life

Taufik Suryadi

, Kulsum

)

Department of Forensic Medicine and Medico-Legal Syiah Kuala University, Banda Aceh, Indonesia

Department of Anesthesiology and Intensive Care Syiah Kuala University, Banda Aceh, Indonesia

Keywords: Palliative Care, Medical Humanities, Ethics, Legal

Abstract: Palliative care is end of life care for the critical patients. Decision making for palliative care is so difficult

because its depends on several aspects such as medical humanities, ethical and legality. Medical humanities

aspects included a humanistic approach, cultural, religious and spirituality must be considered. Whereas

ethics- legal aspects include ethical and legal consideration in decision making to end of life . This article

discusses about decision making to palliative care in terminally illness of patient and hopeless.

1 INTRODUCTION

Treatment of patients nearing the end of life requires

considerable attention from health professionals,

especially doctors and nurses. The spiritual and

humanistic support of professionals is especially

meaningful for the patient enduring his life

(Wheatley et al ., 2015). Doctors and nurses as

professionals who have an ethics code of proffesion

have a duty to respect the patient's autonomy rights

in the hope of the patient at the end of their life.

Doctors are on duty to support the patient's full

expectations and nurses serve as patient advisors at

the end of their life (Wilson et al., 2013). The

increasing number of hospitalized patients

approaching the end of life in recent years

desperately needs a special so-called palliative care.

Based on a study conducted by Van Tricht et al .,

80% of 2420 patients underwent restrictive measures

and the termination of therapeutic assistance is

caused by the patient's condition that is very old, a

disease that has reached the terminal stage, having

limitation from organ function previously, chronic

diseases, and medical disorders with severe and

acute condition .

The terminal stage of an illness is a medical

condition characterized by there is no hope for

patient to recover (hopeless). The terminal medical

condition is a progressive process towards death

through some stage in the form of a decline in

physical function, psychological, social, and

spiritual for the patient. Types of diseases that often

entered the terminal stage of which is cancer,

infection, heart disease, lung disease and nerve

disease (Van Tricht et al., 2011) .

Based on the Decree of the Minister of Health of

the Republic of Indonesia Number:

812/Menkes/SK/VII/2007 about Policy in Palliative

Care, in Indonesian not more hospitals that already

gives services palliative care, it is still limited in the

five provincial capitals, namely Jakarta, Yogyakarta,

Surabaya, Denpasar , and Makassar. The limited

number of hospitals that provide palliative care

because of the large needs of patients, the lack of

doctors and nurses are able to provide an palliative

care and also facilities infrastructures are still

limited. Seeing this condition required

hospitalization -home other hospitals have facilities

and adequate resources for the implementation of

palliative care. In Aceh until now there is no

services to palliative care spesifically, Dr.Zainoel

Abidin hospital in Banda Aceh has the potential to

develop palliative care given these hospitals because

the hospital have sufficient resources, sufficient

equipment and hospital conditions were Islamic

shariah supports palliative care based on Islamic

services for patients. In its implementation palliative

care requires consideration of the medical

humanities, ethics and legal so that the activity can

be a good clinical practice in the case of end-of-life

care.

Suryadi, T. and Kulsum, .

Medical Humanities, Ethics and Legal Considerations in Palliative Care: Toward a Good Clinical Practice in End of Life.

DOI: 10.5220/0008789601250131

In Proceedings of the 2nd Syiah Kuala International Conference on Medicine and Health Sciences (SKIC-MHS 2018), pages 125-131

ISBN: 978-989-758-438-1

125

According to the World Health Organization

(WHO) , palliative care is an approach to improving

the quality of life of patients and families facing

disease-related illness- related problems , through

the prevention and recovery of disease by early

identification and a perfect assessment for the

treatment of pain and problems others, both

physical, psychosocial, and spiritual (WHO, 2018).

The main purpose palliative care is improving the

quality of life of the patient, not to cure his illness.

Therefore, both doctors and nurses must understand

the procedures for improving the quality of life

desired by the patient. But keep in mind that

palliative care no intented to accelerating or delaying

death (Rasjidi, 2010).

2 PALLIATIVE CARE

Based on Decree of the Ministry of Health of the

Republic of Indonesia Number: 812 /

Menkes/SK/VII/2007 on Palliative Care Policy,

palliative care conducted by a team consisting of a

variety of disciplines integrated, among other health

professionals (such as doctors, nurses, psychologists,

physiotherapists, nutritionists), social workers,

religious leaders, families, and volunteers who have

participated in education/training palliative care and

has obtained a certificate of competence from the

Ministry of Health of the Republic of Indonesia .

Successful palliative care depend on effective co-

operation and interdisciplinary approaches between

physicians, nurses, social workers, religious leaders,

volunteers, and other service members who meet the

needs of the patient. Collaboration between

members of the palliative care team with the

patient's family is considered a primary need that

mutually supports the smooth conduct of palliative

care (Muhith & Suyoto, 2016). The purpose and

benefits of palliative care include: (Downing et al.,

2010; Nur wijaya, 2010; Rasjidi, 2010).

1. Reduce or eliminate other disturbing pain

and complaints.

2. Make the patient understand that the

process of life and death is normal.

3. Integrates the psychological and spiritual

aspects of patient care.

4. Provide support to allow the patient to live

as actively as possible up to the death.

5. Provide support to help families overcome

the illness of the patient and in preparing

for death.

6. Use a team approach to find out the needs

of the patient and his family, including

death counseling if necessary.

7. Improve the quality of life and slow the

course of the disease.

8. Monitor underlying disease and together

provide other therapies intended to prolong

life, such as chemotherapy, radiation or

antiretroviral therapy (ART), and include

finding out the patient's need to better

understand and manage clinical

complications.

9. Respect the patient's trust and social values

and culture.

10. Balancing to benefit of the investigation

and treatment of the danger that may occur

and thus ensures the quality of living.

11. Caring for patient autonomy rights and

patient choice.

2.1 Medical Humanities

The medical humanities have some insight in the

medical literature, sometimes overlapping with

medical ethics. the medical humanities seriously

develop together aspects of the humanist, scientist,

medical and others, who believe that the doctors will

put a touch of humanity to the practice of medicine,

despite getting increase of medical science and

technology (Alabi et al., 2008). The fundamentals of

the medical humanities are inclusively defined as a

collection of the humanities sciences of literature,

philosophy, history, arts, music, cinema, theater,

law, economics, politics, theology and anthropology,

culture, religious and spiritual aspects (Gillon,

2000). According to Shapiro et al (2009), the

medical humanities is a mole, concepts, and content

of one or more of the humanities disciplines to

examine disease, pain, hope, healing, treatment

relations and other aspects of medical and health

care practices.

2.2 Spirituality and Patient

Religiousity

Patient wants to be always cared for and treated as a

complete in biological, psychological, social, and

cultural human being, not enough just to see him as

a "sufferer" only. The desire of patients treated as

whole human point include biological dimensions

(physical), mental and emotional (psychological),

social, cultural and spiritual (Alabi et al ., 2008). For

many patients, spirituality is an important part of his

recovery. There is some scientific evidence that

SKIC-MHS 2018 - The 2nd Syiah Kuala International Conference on Medicine and Health Sciences

126

many serious diseases can be cured and care with the

approach of the patients spirituality and religious

beliefs its. Religiousity/spirituality includes a

widespread practice that predicts the success of

resistance to physical illness (Koenig et al ., 2004).

A Study by Koenig et al (2004), the results indicate

that patients with a good religious predicted faster

recovery from depression, particularly in patients

with impaired physical function. In a meta-analysis

study of more than 850 respondents who examined

the relationship between religiosity and some

aspects of mental health, the majority of respondents

indicated that one's experience had better mental

health and able to handled stress if they were

religious. Another analysis of 350 respondents was

found that religious people were physically

healthier, healthier in style and needed less health

care (D'Sauza, 2007).

Some examples of humanistic values that rely on

religious and spiritual values

can be done on

palliative care. The palliative patient is a very weak

person because he is being tested with the disease by

ALLAH Subhaanahu Wa Ta’aalaa.

Patients need a

moral boost and reassurance that they can pass all

his

exam, realize that the disease is only temporary

and there is a limit and hope for a good recovery

(Ondigo, 2010).

Doctors and nurses can provide

moral support to patients and their families by

stating a few sentences of entertainment for

example,

that the illness was actually intended to

reinforce belief and can

take away sin (Haneef,

2006).

In palliative care there should also be a sense of

optimism in the patient. If the patient has despaired

from healing, the doctor and nurse should always

give her optimistic feelings and positive

expectations to her patient, bringing her the good

news and desire to heal. It is necessary to convey to

the patient that the believer should not despair of the

trials of ALLAH, ALLAH has revealed the distress

of Prophet Ayyub 'Alaihissalam, restoring the vision

of Prophet Ya'kub' Alaihissalam. ALLAH the

Almighty reveals all distress and disaster, restores

health, and replaces from sickness to health, from

weak to strong (Ramadan, 2004) . Attitude to the

patient with the pain of the patient is also needed in

palliative care. In Islamic perspective, patients do

not feel alone, emphatic to feelings of the people

who surrounded him, and the prayers that flow has

eased the pain of them and calamities that befall

them, it is truly a peak of charm humans and peak

sublime feeling to the human's needed by the patient

(Haneef, 2006 ; Malik, 2013 ).

2.3 Patient Condition

Each patient has a unique with the symptoms and

diagnosis of the disease are different, but none of the

patients had a condition exactly the same as other

patients. This uniqueness should be considered in

planning palliative care for each patient (Rasjidi,

2010). This attitude includes sensitivity and empathy

to the patient. Need consideration all aspects of the

suffering of patients, not only health problems but

also psychological and social. The approach should

be holistic and integral (Wheatley et al ., 2015) .

There are patients with palliative care always give

special attention, especially in patients with

advanced disease because the condition will tend to

decline over time (Rasjidi, 2010) . the factors non-

medical such as ethnicity, race, religion, and other

cultural factors can affect the suffering of patients,

therefore these factors must be considered in

palliative care planning (Alabi et al ., 2008) .

Palliative care must in accordance with stage

right and the patient's prognosis, because

inappropriate treatment, whether more or less, will

only add to the suffering of the patient. Giving an

extremely care (over medicalization) can excessive

risk to provide false hope to patients who could care

it becomes useless (Alabi et al., 2008). This is

related to ethical issues that will be discussed later.

Treatment is given only because the doctor feels the

need to do something even if it is useless is unethical

(Rasjidi, 2010) .

2.4 Ethical Considerations

Patient criteria to be given palliative care based on

ethical considerations can be based on principles

base of ethics according to Beauchamp and

Childress theories and by using clinical ethical

theory from Jonsen, Siegler and Winslade

(Beauchamp and Childress, 2013; Jonsen et al.,

2010; Kusmaryanto , 2012).

Decision-making by using ethical approach to

treatment of paliatif both by Beauchamp and

Childress theories and by using clinical ethical

theory from Jonsen, Siegler and Winslade (

Beauchamp and Childress, 2013, Jonsen et al .,

2010) can be seen in table 1.

Medical Humanities, Ethics and Legal Considerations in Palliative Care: Toward a Good Clinical Practice in End of Life

127

Table 1: Decision-making for palliative care.

Assessment

of Patient

Condition

Basic

Principles of

Ethics

Clinical Ethics Recommen-

dation

Patients with

terminal

stage

(terminal

state) and

there is no

hope of

recovery

Beneficence

(-)

Non-

maleficence

(-)

Justice (+ )

Autonomy (+

)

Medical

indications (-)

Patient

preferences

(+)

Quality of life

declines

Contextual

features (+)

to be given

palliative

care

Patients who

are given

optimal

therapy but

in vain (futile

treatment)

Beneficence

(-)

Non-

maleficence

(-)

Justice (+)

Autonomy

(+)

Medical

indications (-)

Patient prefe-

rences (-)

Quality of life

declines

Contextual

features (+)

to be given

palliative

care

According to the theory of Beauchamp and

Childress, medicine adheres to four basic moral

principles (principles base of ethics-the same term)

,ie autonomy, beneficence, non-maleficence and

justice. Autonomy means any medical action must

obtain the consent of the patient (or his immediate

family, in the case of his / her consent), beneficence

means any medical action should be directed to the

patient's good, non-maleficence means any medical

action should not exacerbate the patient's condition,

and justice means that attitude or medical action

should be fair - especially in terms of distributive-

justice (O'Rourke, 2000; Beauchamp and Childress,

2013). Moral dilemma is still possible if the moral

principle of autonomy is confronted with other

moral principles or if the principle of beneficence is

confronted with non-maleficence , for example if the

patient's wish (autonomy) is contrary to the principle

of beneficence or non-maleficence , and if

something measures contain beneficence and

nonmaleficence simultaneously as in rule of double

effect ( Beauchamp and Childress, 2013 ;

Kusmaryanto, 2012 ).

Beneficence is concerned with always providing

the best for the patient (providing benefits), while

non-maleficence is intended to prevent illness in the

patient (preventing harm). Beneficence aims that all

patients should be treated (general principles) if they

are beneficial, but if the patient's treatment is

virtually useless it is not the goal of beneficence.

Likewise, if therapy is continued with the

consequences of not providing benefits to patients

and their families then this is also contrary to the

principle of non-maleficence ( McLimunn, 2006).

Indications of palliative care are social,

psychological and spiritual care that are no longer

purely medical. When a patient has been established

by the treating physician that the patient has entered

the terminal phase of his illness or therapy has been

in futile and medically no longer can be taken any

action then the ethical choice is which is the most

dominant based on the primafacie principle (

Beauchamp and Childress, 2013) . According to the

clinical ethical theory of Jonsen, Siegler and

Winslade, there are four quadrants that can be

considered, namely medical indication, patient

prefference, quality of life and contextual features

(Jonsen et al ., 2010) so that this theory is often

called as four box method .

2.5 Informed Consent

In the palliative care, the patients must understand

the meaning, purpose and benefits as well as the

implementation of palliative care through intensive

and continously communication between palliative

care team with the patient and his family. If a

medical

treatment is necessary, an informed

consent is required. Implementation of informed

consent has two dimensions, both ethical and legal.

Ethically, informed consent is the implementation of

autonomy rights of patients and legally also

provided for in the law and regulation in Indonesia

(Kusmaryanto, 2012; Republic of Indonesia, 2008) .

In Indonesia generally every acts of medicine,

medical treatment or medical intervention must be

requires an informed consent (Beauchamp and

Childress, 2013), including to palliative care

(Republic of Indonesia, 2008) . Legally, both who is

receiving information and giving consent done by

the patient himself when he was still competent, but

if the patient is not competent may be delegated to

her family.

2.6 Advanced Directive

Before doing a palliative care, doctors and nurses,

with the whole team should strive to get a message

or a statement of the patient (advanced directive)

when the patient is still competent about what you

can or should do or should not do with him when

will anything happens, for example a comma

condition (Republic of Indonesia, 2008) . While

there is no rule about the right to die, there are rules

for adult patients to refuse medical treatment that

could result in his death. There are several

requirements that must be met to receive an

advanced directive will be: at the time of making an

SKIC-MHS 2018 - The 2nd Syiah Kuala International Conference on Medicine and Health Sciences

128

advanced directive patient must be competent, when

refusing a patient's actions should be voluntary

without coercion and pressure, advanced directive

can contain any explicit what action may or not do,

or it may be only delegate a person as represent him

make decisions when the patient is incompetent

(Jordens et al., 2005). Advanced directive statement

should be made in writing and entered into the

medical record that will serve as the main guide for

the palliative care team. In emergency condition, for

the best interests of patients, palliative care team can

perform medical actions if necessery, and

information can be given on the first occasion

(Republic of Indonesia, 2008).

2.7 Do Not Resuscitate

Decisions about the commission or omission of

Cardiopulmonary resuscitation (CPR) in patients

with life-threatening illnesses to be made in the

regulations related hospital palliative care (Wheatley

et al., 2015). Decision to Do not resuscitation (DNR)

can be made by the competent patient after

discussion with the palliative care team. Information

about DNR, it has been conveyed to patients while

entering or starting palliative care. Competent

patients have the right to DNR, which an adequate

information has been given and they have

understood. The decision can be made by using form

of written messages (advanced directive) or other

form in the patient's informed consent before the

loss of competence. The patients family is basically

not be made the decision to DNR, except it has been

booked in written advanced directive. The ethical

principles applied to the DNR also refer to

Beaucamp and Childress's theories of four basic

principles of autonomy, beneficence, non-

maleficence and justice. If the patient has been in

terminal stages and resuscitative measures will

neither known or improve the quality of life based

on scientific evidence at the time, the palliative care

team can make a decision not to resuscitate based on

clinical guidelines in this field (Beauchamp and

Childress, 2013; Jonsen et al ., 2010; Republic of

Indonesia, 2008) .

2.8 Withholding and Withdrawing Life

Support

Basically palliative care in intensive care installation

following the general provisions as described above.

In the face of terminal stage of deseases, the

palliative care team should follow the guidelines

determining to brainstem death and termination or

limitation equipment life - supporting (McLimunn,

2006). Consideration of bioethics that must be

considered in determining the action withholding

life support and withdrawing life support is when,

where and the condition of how the doctor convey it

to the patient's family. Firstly the physician must

respect the dignity of the patient (patient's

autonomy) in this condition the patient or his family

must have autonomy to receive relevant information

about the disease (Levin & Sprung, 2005). The

physician should determine whether the patient,

family or relative is aware of the last health

condition of the patient ( Aeckermann, 2000). The

most important thing in determining when action

withholding life support and withdrawing life

support is when a medical action has changed from

ordinary treatment to extraordinary (Malik, 2013).

The terms withholding life support and

withdrawing life support is not the same meaning. In

simple terms withholding life support means no

longer doing resuscitation. In contrast to

withdrawing life support, once discontinued

withdrawal therapy the ventilator and inotropic

should be discontinued, heavy sedation usually

arises and death will soon occur (Levin & Sprung,

2005; Malik, 2013). Decision-making to withholding

and withdrawing life support in critical care patients

should be done cautiously. It is necessary to consider

the medical, bioethics and medico-legal aspects. The

basic principle of decision-making lies in patients

who are medically present in circumstances that are

not could healed effect diseases (terminal state)

and/or medical treatment already vain (Futile). Both

of these principles become the basis of bioethics

through the basic principles of ethics and also

become the basis of law that can be accounted

professionally (Kusmaryanto, 2012; Republic of

Indonesia, 2008).

2.9 Aspects of Legal

In Indonesia, according to rules regarding the

determination withdrawal or withholding to the

therapeutic support listed by Rules of Minister of

Health of the Republic of Indonesia Number 37

Year 2014 Chapter 3 Articles 14 and 15 about

withdrawal or withholding life support that is on

patients who are located in circumstances with the

terminal state of desease (terminal illness) and

medical treatment already vain (medical futility) can

do termination or limitation of life support as same

as by term of withdrawal or withholding life support.

In the Dr.Zainoel Abidin hospital, major

provincial hospital of Aceh- Indonesia, the policy

Medical Humanities, Ethics and Legal Considerations in Palliative Care: Toward a Good Clinical Practice in End of Life

129

about criteria for withdrawal or withholding life

support for patient with terminal stage condition set

by Director of the hospital. Decision for termination

or limitation of life support to patient do by medical

team who handling the patient after consult with a

appointed doctor by medical committee or ethical

and legal committee. Planning to termination or

limitation of life support (withdrawal or withholding

life support) must informed and earn approval from

family or representing patient.

The life support treatment that can be stopped or

postponed only actions of an extra-ordinary

treatment such as hospitalized in Intensive Care

Unit, resuscitation cardiac pulmonary, control

dysrhythmias, intubation tracheal, mechanical

ventilation, drug vasoactive, parenteral nutrition,

organ artificial, transplant, blood transfusion,

monitoring invasive, and the provision of antibiotics

and other actions set out in the standard of medical

services. The life support treatment is not could

stopped or postponed covers oxygen, enteral and

nutrition fluid crystalloid because it ordinary

treatment (Republic of Indonesia, 2014). Based on

regulation of the Minister of Health of the Republic

of Indonesia Number 290 year 2008 chapter 4 article

16 on approval action medical on special situation,

that is action withdrawing or withholding life

support on a patient must got it approval family

nearest patient. Based on chapter 5 article 18 of this

regulation, on denial or refusal a medical treatment

and medical intervention that is could do by patient

and or family nearby after they received an

explanation about medical treatment to be do.

Ugliness patient condition to be worst that is

ends with dead. Determination of death based on

regulation of the Minister of Health of the Republic

of Indonesia number 37 of 2014 can be do with use

criteria of death diagnosis in clinical or conventional

or diagnostic for brainstem death criteria. Based on

article 8-13 of this regulation about criteria of death

diagnosis both clinical or conventional as it is

intended in Article 7 is based on has entirely and

permanently cessation of circulation and respiration.

Determination citeria of brainstem death only could

do by team a doctor composed of 3 (three)

competent physicians, in Aceh ussually do by

anaesthesiologist, neurologist, neuro surgeon,

intensivist and medico-legist as representative of

medical committee and the diagnosis brainstem

death may be or must made in the Intensive Care

Unit and examination conducted must corresponding

with procedure and requirement for determine the

death diagnose of brainstem. Based on article 13,

after brainstem occured, then all the life support

therapy must soon stopped. The palliative care team

has medical priviledge was given by the Chairman

of the hospital, including when home care patients.

Basically acts of a medicine must be done by

medical personnel, but by consideration to patient

safety, a medical treatment can be delegated to non-

medical skillized personnel.

Based on the decree of Minister of Health of the

Republic of Indonesia Number: 812 / Menkes / SK /

VII / 2007 on palliative care policy, the scope of

activities of palliative care as follows: pain

management, other physical complaints, nursing

care, psychological support,social support, cultural

support and spiritual as well as preparation to end of

life.

3 CONCLUSION

The large number of patients suffering from terminal

illnesses and medical therapies has been in futile,

demanding hospitals to provide a special treatment

called palliative care. The goal of palliative care is to

improve the quality of life of patients and families in

dealing with life-threatening problems without

providing extraordinary medical therapy. Prior to

palliative care should first consider some aspects of

the medical humanities, ethics and legal among

others: spirituality and religiosity, the patient's

condition, principles base of ethics, clinical ethics,

informed consent, advanced directives, do not

resuscitation (DNR) and withholding and

withdrawing life support.

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