By Arcita Pramudita, MD, Lintang Sagoro, MD, Ardita Pramudani, MD, and Polo Camacho, PhD
Anto has been diagnosed with metastatic stage IV liver cancer. As his condition worsened and he lost decisional capacity, his children and extended family gathered by his side in the hospital ward, each hoping for a hint of good news. A general practitioner (GP) who was on shift felt unsure whether she should discuss Anto’s deteriorating condition with his family, or the possibility of Anto passing away.
As the GP briefed the family about Anto's state and how he might not have much time left, she wondered, Should I have done this earlier? She further reflected on Anto’s care and asked herself, Should I have called the palliative care team when Anto first found out he was diagnosed? Did I wait too long to talk about Anto’s prognosis? She also thought, Does talking about death mean that I've given up on Anto? How early is too early to initiate these conversations, especially considering that, in Indonesian culture, discussions about death are sometimes seen as taboo?
Because such a conversation was never initiated by the medical team or Anto’s GP, Anto couldn't share what he wanted for his care or explore the possibility of comfort-focused treatments before he passed. Consequently, his family was not prepared to care for him in the way he might have wanted.
The Indonesian Medical Education System and Palliative Care
The Indonesian Medical Curriculum developed a framework for the kinds of competencies a medical student should have by the time they graduate. There are four competency levels related to end-of-life and palliative care education. At the highest levels, in the palliative care domain, students should have the ability to:
- Manage care for terminally ill patients
- Manage acute pain and chronic pain
- Evaluate and manage symptoms
- Offer psychosocial, spiritual, and cultural care
- Document specific instructions for the management of advanced-stage serious illness (advanced directive)
- Organize and manage palliative care referrals
Although palliative care measures were initiated in Indonesian medical education and introduced in 1992, it was only in 2023 that these measures gained official recognition and support. This milestone was achieved through the dedicated efforts of palliative care advocates, including members of academia and community groups. Under the latest legal decree, palliative care was formally acknowledged in Indonesia as an integral component of medical care, alongside promotive, preventive, curative, and rehabilitative care. So, it is now legal for teaching hospitals to organize specialized/subspecialized educational programs in palliative care. Despite these improvements, however, formal palliative education is not yet mandatory for teaching hospitals, and much more is needed to integrate palliative care in Indonesia ethically.
The Significance of Bioethics in Palliative Care
Not much is said in the Indonesian medical curriculum about how bioethics should be taught, as it only states that every curriculum should include an understanding of biomedical ethics. Medical students are only required to memorize which bioethical domain is suitable to particular clinical cases, using Beauchamp & Childress’ principlist approach: respect for autonomy, beneficence, non-maleficence and justice. Rarely does the curriculum go beyond these principles to explore practical ethical considerations or the other existing bioethical principles. For example, the Hippocratic Oath is, and continues to be, the default principle in Indonesian medical education. But how should medical students implement such an oath in practical settings? The biomedical ethics requirement, as it exists in the Indonesian medical curriculum, does not necessarily help in addressing clinical ethical problems. This issue becomes apparent in palliative care settings.
There have been critiques of the Hippocratic Oath in that it does not offer concrete ethical guidance in contemporary medicine. Its most famous sentence is captured in the bioethical principle of non-maleficence: “Do no harm.” This prescription, however, is vague. For example, when a clinician is drawing blood samples from patients and they experience pain, would such a medical intervention not constitute a harm? The Doctrine of Double Effect helps in adding further nuance to the application of the principle. This principle states that if the intention and goal of some act is to benefit someone (e.g., cure disease), then secondary harms are morally permissible. Since the aim of drawing blood is to assess the patients’ health, the pain from the needle is merely secondary, so drawing blood is permissible. In the context of palliative care, physicians are at times uncomfortable initiating palliative care discussions, because they feel that doing so will be harmful to the patient (much like taking a blood sample), without realizing that the goal, in part, is to relieve suffering and achieve goal concordant care. The intention, therefore, is to care for the patient, not to harm the patient.
Despite being listed as one of the competencies, in reality, most medical faculties have not included palliative care or bioethics in the curricula and, as a result, have not yet taught it to Indonesian medical students. Medical students need training about giving patients alternative treatment options. They should understand the intention behind advocating for patient values in clinical decision-making, and why it matters bioethically to provide more care options. In addition to benefiting patients, they should understand that exploring palliative care, as a foundation in treatment planning, conveys respect for the patient’s family and community, an insight that is often missed.
Why Do Palliative and End-of-Life Care Matter?
In addition to the practical challenges mentioned above, there is also, at times, confusion about the difference between palliative care and end-of-life care. The fact that the Indonesian medical curriculum uses these terms interchangeably, for example, has resulted in a stigma within the health care work force. Moreover, limited effort and time has been dedicated to teaching medical students about the distinction. The distinction between palliative and end-of-life care is crucial because, though they sometimes overlap, they can imply a different set of treatments and procedures. Although hospice care shares much in common with palliative care, each serves unique patient needs within the broader spectrum of care. Hospice focuses on those nearing life’s end, aiming for a dignified death and a transition from the restoration of function to comfort. Palliative care goes beyond end-of-life planning; it can significantly improve the patient’s quality of life through the achievement of goal-concordant care as well as the family's quality of life.1
But when is the right moment to discuss palliative care?2 The truth is, such discussions, even if they appear premature or uncomfortable, are essential. Palliative care discussions pave the way for opening dialogue among patients, caregivers, and physicians, shaping the treatment plan and goal along the disease's trajectory.1Introducing palliative care early on in a patient’s care plan can reduce pain, provide emotional support, and allow patients to have their preferences recognized and carefully integrated into their care plan.3Early discussions equip families to utilize available services and resources, facilitate informed decisions, and avoid hasty choices typical of late-stage diagnoses.4 Proper and timely integration with palliative care can yield a smooth transition into specialized end-of-life care, like hospice.5
Central to palliative care's holistic approach is advance care planning (ACP). ACP empowers patients to advocate their personal values, aspirations, and future medical treatment preferences, while also allowing them to appoint a health care surrogate to make decisions on their behalf.2 In situations like Anto's, the lack of ACP can result in families being overwhelmed, confused, and unprepared. ACP ensures that when critical decisions need to be made, they reflect the patient's wishes, giving them a voice even when they might no longer be able to speak for themselves.2
There are many barriers in attempting to integrate palliative care in Indonesia, which include a lack of patient awareness and accessibility, followed by a prevalent knowledge deficit about palliative care among Indonesian health care workers. Despite these challenges, however, there have been significant efforts to provide culturally sensitive approaches to palliative care and ACP.2,6Studies involving 16 Indonesian physicians and 16 nurses found that the health care professionals deem cultural collectivism, communication norms, and the patient’s religious beliefs as essential to culturally sensitive approaches to palliative care.7
Many remain unfamiliar with the comprehensive benefits of palliative care and hospice services, leading to a ripple effect that leaves the broader population uninformed or, worse, misinformed.8 Resource limitations further compound the issue. The absence of formal training on palliative care for health care professionals and the scarcity of dedicated facilities make palliative and hospice care inaccessible to many patients battling serious or terminal illness. In Indonesia, a dedicated community group known as the Palliative Care Forum (paliatif.net/pedoman) is actively addressing this crucial issue. They have established themselves as a valuable resource for palliative care in Indonesia, and their efforts deserve greater recognition and support.9 Despite efforts to increase awareness, palliative care has not yet garnered substantial awareness among the population and policymakers, and thus remains unprioritized. As a result, both the government and private insurance sectors overlook its pivotal role, excluding it from insurance coverage plans and subsequently placing an undue financial burden on those seeking these essential services. Additionally, patients and their families struggle with ambiguities surrounding how palliative care approaches align with, or diverge from, curative measures, a dilemma that primary health care professionals don't always address.10 Central to these multifaceted challenges is the important role of communication. Conveying an unwelcome diagnosis with a patient must be done with empathy, clarity, and sensitivity. An unsettling reality is that numerous health care professionals, despite their proficiency in ACP, still lack the serious illness communication skills necessary for providing information surrounding end-of-life care.11
When we think about palliative care, we often associate it with dignity in dying. But, within Indonesian GP practice, the concept of dying with dignity is unfamiliar. Many individuals from Indonesia, or from Indonesian heritage, operate under the misconception that terminally ill patients who are ready for death are morally in the wrong. Thus, the very idea of planning for end-of-life is considered taboo.12 This is further complicated by the fact that, in Indonesia, medical decision making takes place within family settings. The focus thus shifts from the patient’s wishes and preferences to that of the family.2 As we note above, however, palliative care is a viable treatment option which aims to benefit patients and their families.
Anto was unable to explore or execute his end-of-life treatment options. Had palliative care been discussed sooner, Anto would have had treatment options better aligned with his values. The troubling experience with Anto and his family highlights a critical issue that numerous patients at the end of life, and their loved ones, must grapple with. Indeed, Anto's predicament is more common than we might imagine, revealing a critical gap and opportunity in Indonesian medical training. Indonesia has a 3-year subspecialty training program in palliative care which falls under internal medicine departments, but if medical training in palliative care is limited solely to subspecialty training programs, GPs may not become aware of all that palliative care entails, which could significantly impact referrals to palliative care subspecialists. Many general practitioners and specialists still lack the guidance, knowledge and skill to integrate palliative care into their standard treatment routine in a timely manner, leaving patients and caregivers often unprepared to navigate such distressing circumstances. Caring for patients who are terminally ill should gravitate more towards understanding patient needs, ensuring genuine comfort, and avoiding the pitfall of aggressively attempting to fix or cure.
Limited understanding in palliative care leads to inadequate discussions with patients who may want palliative care. Collaborative efforts should be sought between health care organizations in Indonesia and health care organizations outside of Indonesia to better address these communication gaps. Health care organizations outside of Indonesia that focus on palliative care and patient advocacy could collaborate with local palliative care entities in Indonesia such as Masyarakat Palliative Indonesia (Indonesian Palliative Society) to initiate conversations and partnerships with Indonesian medical education institutions. Collaborating organizations can commit to integrating palliative care within the core curricula for primary and specialized medical training, thus improving palliative care education in Indonesia. These improvements will help oncologists and health care professionals in Indonesia initiate palliative care conversations with patients in a timely manner, and serve as a crucial first step in respecting patient wishes, achieving shared decision-making, and promoting patient dignity in Indonesia.
Dr. Pramudita is a general practitioner in Indonesia, candidate in Master of Medical Sciences in Clinical Investigation at Harvard Medical School, and awardee from Indonesia Endowment Fund for Education (LPDP). Her research at the Dana-Farber Cancer Institute focuses on psychosocial aspects, quality of life, and survival for patients with acute myeloid leukemia/myelodysplasia syndrome. She also interns with fightcolorectalcancer.org, contributing to cancer education. Disclosure.
Dr. Sagoro is a general practitioner in Indonesia who delivers home-based primary palliative and hospice care. He is currently pursuing a Master of Medical Sciences in Global Health Delivery at Harvard Medical School and serves as a research assistant for the PEPFAR’s Director of Behavioral Sciences. His prior clinical experience in palliative care and advocacy in HIV have deepened his commitment in addressing the needs of the aging people living with HIV in lower- to middle-income nations. Disclosure.
Dr. Pramudani is a general practitioner in Indonesia and a candidate for the Master of Science in Bioethics at Harvard Medical School. She previously worked in government-owned health care facilities and the Indonesian Red Cross - Semarang. Disclosure.
Dr. Camacho is the ethics program manager at ASCO. His research focuses on biomedical ethics, particularly end-of-life ethics and clinical ethics, as well as philosophy of science. Disclosure.
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