Wednesday (21/6), the Center for Medical Bioethics and Humanities held the Raboan Discussion Forum. The topic that we raised was Patient Preference VS Family Preference in Palliative Care. The speaker for this discussion was Dr. Christantie Effendy, S.Kp., M.Kes. and moderated by dr. Galuh Dyah Fatmala.

The family in Indonesia is consists of extended family, so making decisions cannot be based on personal preferences. Elderly people in Indonesia are often not the important to have the opportunity to express their opinions, as they are perceived as lacking competence in decision-making.

Patient is a person who is waiting for or undergoing medical treatment and care. The word patient comes from a Latin word meaning to suffer or to bear. Traditionally, the person receiving health care has been called a patient. A client is a person who engages the advice or services of another who is qualified to provide this service. The term client presents the receivers of health care as collaborators in the care, that is, as people who are also responsible for their own health.

Promoting Patient centred care from diagnosis to end of life requires a better understanding of physical, psychological, social, and spiritual coping factors in advanced cancer. PCC makes the client and his or her family an integral part of the care team, and as such they collaborate with health-care professionals in the decisions that impact on the care that they receive.

8 dimensions of patient centered care:

• Patient preferences: There is a need to be honest about the patient’s illness and educate them so they can actively participate in deciding the best solution for their disease.
• The Role of Healthcare Workers
• The concept of family caregivers: Sometimes because they really love patient, many relatives does not ask about the patient’s opinion, assuming that the best decisions should come from the family.
• The concept of decision-making autonomy: In challenging disease situations where a cure is difficult to do, the patient should be given the opportunity to express their desires and make decisions together.
• Ethical Dilemma
• Advance Care Planning

The communication gap can make patients more stressed because they don’t know what illness they have or how long the treatment will take. Proper communication with patients must be carried out so that we understand the patient’s wishes and level of understanding. There are still difficulties for healthcare workers to convey bad news to patients about their health condition. The COVID-19 phenomenon has caused a change in attitude towards sharing sad news, so the patient’s family no longer considers painful facts about the patient as taboo.The phases of the palliative care pathway :

• The first phase : when diagnosed
• The middle phase : constituted the time between the early phase and the terminal phase
• The terminal phase : comprised the last weeks and days before death

Palliative home-based care is a good choice for patients because the best indicator of the end of life is when they pass away peacefully at home. But healthcare workers still need to monitor the progress of the condition of patients being treated at home.

Five levels of involvement:

• Contributing to action sequences
• Influencing the problem definition
• Sharing the reasoning process
• Influencing decision making
• Experiencing emotional reciprocity

4 boxes method – Facilitating ethical and legal practice:

• Clinical indications: Sort out which therapies are still effective and which are no longer effective.
• Patient preferences: Involve the patient in deciding something related to their life.
• Quality of life: The patient’s wishes for food/activity need to be aware because it can help patient to be more enthusiastic about maintaining good health (provided it is monitored).
• Contextual features: Are there any external factors that affect the patient’s mental well-being?

A Seven Step Model

• Determine the facts.
• Define the precise ethical issue.
• Identify the major principles, rules, and values.
• Specify the alternatives.
• Compare values and alternatives.
• Assess the consequences.
• Make a decision.

On Wednesday (24/5), the Center for Medical Bioethics and Humanities held the Raboan Discussion Forum. The topic discussed was the Moral and Legal Guidelines for Genetic Editing. The speaker for this discussion was Prof Benjamin Gregg (expert in epigenetics) and it was moderated by dr Wika Hartanti, MIH .

Epigenetics is the study of how a person’s behaviour and environment can change the genes in their body. A genome is all of an organism’s genetic information. The germline consists of the cells that form the egg, sperm, and the fertilized egg. They pass on their genetic material to the offspring.

Prof. Gregg explained that genetic editing involves changing the genetic material of living organisms by inserting, replacing, or deleting DNA sequences. There are several problems in the application of genetic editing related to moral and legal guidelines.

Some frequently asked questions are:

1. “Could genetic manipulation emancipate humanity from genetic diseases?”
2. “Should parents have a right to determine the best genetic inheritance for their future children?”
3. “Will people in the future have a right to be free from genetic alteration?”

General principles to guide the regulation:

1. Standards for regulation guided by several questions such as
2. Human capacity for critical self-reflection: an aspect of entwinement of human cognition and human made culture.
3. Political bioethics does not view human nature as a static Essence with innate properties, rather political bioethics views Human Nature as a dynamic co-evolution of biology and culture.
4. political bioethics stresses cultural adaptation over biological adaptation as a species that constructs itself mainly in culture humankind accomplishes most of its tasks in communal life through cultural learning.

Prof. Gregg said that genetic manipulation can be justified when considering what kind of genetic modification will serve the interests of future generations. The interests and well-being of individuals in the future also require an awareness of the responsibilities of the current generation toward the next generation.

Prof. Gregg argues that the embryo is not a person. If we define a person as something more than the potential to become someone biologically, it means culture as well. further an embryo doesn’t’ have ability to veto, of course it cannot veto the planned genetic manipulation from which the future person will develop. According to the Prof. Gregg’s argue that a future person’s overriding interest in avoiding an otherwise avoidable genetically based incapacity for decisional autonomy. The primary concern should be the future person’s interest in avoiding any genetically derived incapacity for decisional autonomy, which wouldn’t be preventable. because it preserves the future persons decisional autonomy.

Wednesday (13/4), the Center for Medical Bioethics and Humanities again held the Raboan Discussion Forum. The topics discussed at this event were Unplanned Complication and How to Deal with It. The speaker on this topic was Dr. dr. H. Sophan Yahya Warnasouda, Sp.OT and Traumatology, Master of Health Law, a bioethicist from the Indonesian Bioethics Forum. Meanwhile, the moderator is dr. Tiea Khatija.

In medicine, ethics has an important role in life. So that its application covers all areas of life, including in health services. Doctors have the obligation to follow the regulations stipulated in KODEKI Year 2012 Article 1 and Law of the Republic of Indonesia Number 29 Year 2004 concerning Medical Practice. 

The purpose of ethics education in medical education is to make prospective doctors more humane and have intellectual and emotional maturity. The Principles of Medical Ethics contain four (4) principles: autonomy, beneficence, nonmaleficence, and justice. Ethics related to the medical profession are recorded in the form of the Indonesian Code of Medical Ethics, namely: general obligations, obligations of doctors to patients, obligations to colleagues and obligations of doctors to themselves. 

In KODEKI, actions or actions have been regulated categories of violations, namely: purely ethical and ethical violations. The Indonesian Disciplinary Honor Council explained that communication errors caused 45% of disciplinary infractions. So communication in health services is very important. Doctors who make mistakes are responsible for ethical, disciplinary, legal, and responsibility to God. 

So Informed Consent is needed to avoid complications. The doctor must give Inform Consent so that the information that needs to be conveyed using language that the patient can understand. 

So that ethics are needed to create behavior, behavior is not only about being given information about which is good which is bad, which is okay which should not be in accordance with the code of ethics and then can change its behavior, but it needs sustainable environmental conditions, from students to becoming doctors, it needs to be escorted by meetings that discuss ethics, so that it can sharpen and still maintain medical ethics. Therefore ethics are constantly required in medicine. 

 

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Unplanned Complication and How to Ethically Deal With it – Dr. dr. H. Sophan Yahya Warnasouda, Sp.OT MHKes

 

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https://youtube.com/live/cnMGCdqFbRs?feature=share

On Wednesday (29/03),  Center for Medical Bioethics and Humanities held the Raboan Discussion Forum again. This time, the topic raised was Ethical Aspects When Seeking Treatment In A Neighboring Country. The speaker of the discussion was dr. Effiana with the moderator dr. Tiea Khatija.

Every year the number of Indonesian people seeking treatment in neighboring countries such as Malaysia, Singapore, and Thailand increases. In this discussion, the object of discussion is the city of Pontianak which is near Kuching city in Malaysia.

There are four terms for medical treatment abroad namely health tourism, medical tourism, medical travel (feeling that doctors cannot handle the disease in their origin city), and medical exile (considered as refugees). Nowadays, generally, it’s more common to call it a medical trip.

According to Ormond, two reasons can motivate people to seek treatment abroad: dissatisfaction (dissatisfaction) and limited access or services (disfranchisement). It is also influenced by two factors such as the pull factor perspective (availability of world-class health facilities/services in the country you want to go to) and the push factor perspective (dissatisfaction with health facilities/services in the origin city).

There are several phenomena of medical travel carried out by Indonesian people (especially in Pontianak), namely having experience of being misdiagnosed by doctors in their country of origin, not trusting medical personnel in their country of origin, having experience of being students abroad, having foreign spouses, and working immigrant.

Those who seek treatment abroad have a higher trust in doctors in the destination country. Some of them had satisfying experiences of being treated abroad so that if they got sick again in the future, they would return for treatment there. Feeling that the price is the same as going to Java for treatment, they can already travel together. They also have experience trading in the country, so they seek treatment there because they feel more familiar with the environment.

Medical trips carried out by Indonesian people have a wide impact, so in deciding to seek treatment abroad, careful consideration of ethical issues/aspects is required to carry out the treatment appropriately.

Wednesday (22/02) Center for Bioethics and Medical Humanities (CBMH FK-KMK UGM) just held Raboan Discussion Forum. The weekly online forum invited Gita Nasution, Ph.D from Australia National University. She presented her research titled Gendered Care and Ethics in Social Research. The discussion was lead by Erlin Erlina, Ph.D from FK-KMK UGM.

Gita presented her ethnographic study that explores the emergence and dynamics of the baby sitter profession in Indonesia, with a focus on the social and economic factors driving its growth and the aspirations of both employers and workers. The study highlights the gendered nature of care work, with women primarily taking on the role of careers in both domestic and public settings.

The study finds that the rise of the service sector in Indonesia has created a need for child care, which is particularly acute in middle-class families where both parents work. Hiring a child carer/nanny is seen as crucial to support dual income families in looking after their children. Meanwhile, from the worker’s perspective, becoming a baby sitter is often a result of limited employment opportunities and the need to provide for their families.

The study also reveals the dual role of agencies in the baby sitter profession: as a supplier of workers and as a training institution. However, there are challenges in the industry, including mismatched expectations, unskilled workers versus demanding employers, and persisting issues of discrimination and class hierarchy.

Overall, the study shows that the baby sitter profession is a social phenomenon that reflects the transformation of domestic work and sheds light on how people adapt to changing social and economic circumstances. While care work has become more professionalized, there remains a power dynamic between employers and employees, and care work remains a gendered profession.