CASE 1 A 50 years old male patient was brought to ER by his family in unconscious conditions. Family mentioned initially patient complained of having headache since morning, accompanied with nausea and vomiting, then followed with gradual decreased of consciousness since 3 hours ago. Initial examination found poor GCS score (E1V1M2), while CT scan confirmed Intra Cranial Hemorrhage (ICH) in posterior fossa, with clot size of approximately 3 cm. Patient had history of chronic hypertension, and without history of head trauma. Doctor was unsure of whether to perform surgical evacuation of clot, because there was risk for death during surgery, otherwise survival usually yields severe permanent neurological deficit, such as persistent vegetative state. However, family insisted that all possible intervention must be performed at all costs, including surgery, even if it might result worse outcome such as death or permanent major neurological deficit. What should doctor do/ suggest to patient and family in this case? Clinical Ethics Worksheet 1. Identify the facts Medical Indications Based on the medical indications, the patient has suffered an intra cranial hemorrhage (ICH) in the posterior fossa with a clot size of approximately 3 cm. The patient's Glasgow Coma Scale (GCS) score is poor (E1V1M2), indicating severe neurological impairment. The doctor needs to consider the risks and potential benefits of surgical evacuation of the clot. Surgery carries the risk of death, but not performing surgery could result in severe permanent neurological deficits. The medical indication suggests that surgery is a potential option to consider. Patient Preferences The patient is currently unconscious and unable to express their preferences. Therefore, the doctor needs to consider the values and wishes of the family as surrogate decision-makers. The family insists on pursuing all possible interventions, including surgery, regardless of the potential risks and outcomes. The doctor should have a conversation with the family to understand the basis for their request and explore their understanding of the risks involved. Quality of Life The potential impact on the patient's quality of life needs to be evaluated. In this case, the likely outcomes of surgery include death during surgery or survival with severe permanent neurological deficits, such as a persistent vegetative state. These outcomes would significantly impact the patient's quality of life. The doctor should discuss these potential outcomes with the family to ensure they have a realistic understanding of the potential consequences. Contextual Features Considerations in the contextual features include the patient's medical history, the availability of resources, legal and institutional policies, and the involvement of other stakeholders. The patient has a history of chronic hypertension, which may have contributed to the hemorrhage. The doctor should take into account the hospital's policies regarding surgical interventions in such cases and the availability of necessary resources. Additionally, it is important to consider any legal or ethical obligations that may affect decisionmaking. 2. Determine the conflicts Description of Conflicts/Issues Conflicting Ethics Principles/Values The conflict centers around the family's 1. Autonomy: Autonomy refers to an insistence on pursuing all possible interventions, individual's right to make decisions about their including surgery, despite the significant risks involved. The family wants to prioritize the preservation of life and the exploration of all treatment options, even if it could result in worse outcomes such as death or severe permanent neurological deficits. On the other hand, the doctor needs to balance the family's wishes with the principle of non-maleficence, which emphasizes avoiding harm to the patient. The potential harm in this case includes the risk of death during surgery and the possibility of surviving with severe permanent neurological deficits, such as a persistent vegetative state. own healthcare, based on their own values, beliefs, and preferences. In this case, the family's insistence on pursuing all interventions, despite the risks, reflects their desire to exercise autonomy on behalf of the unconscious patient. They prioritize the patient's preservation of life over the potential negative outcomes associated with surgery. 2. Non-Maleficence: Non-maleficence is the principle that emphasizes avoiding harm to the patient. The doctor must consider the potential harm that could result from surgical intervention, such as death during surgery or surviving with severe permanent neurological deficits. The doctor has an obligation to weigh these potential harms against the potential benefits of surgery, keeping the patient's best interests in mind. 3. Explore the options List of All Possible Options/Alternatives Surgical Evacuation of Clot Strength Conservative management (observation & monitoring, BP control, ICP management, seizure prophylaxis, nutrition & fluid management, rehab and physical therapy, etc.) It has the potential to remove the clot and alleviate the pressure on the brain, potentially improving the patient's condition. It may prevent further deterioration and additional complications associated with the hemorrhage. It aligns with the family's insistence on pursuing all possible interventions. This option avoids the immediate risks associated with surgery, such as intraoperative complications or death. It may be a more suitable approach if the patient's overall prognosis is poor and the potential benefits of surgery are outweighed by the risks. Weakness There is a risk of death during surgery, especially considering the patient's poor GCS score and the size of the clot. Even if the surgery is successful, there is a possibility of severe permanent neurological deficits, such as a persistent vegetative state. The decision to proceed with surgery needs to be carefully balanced with the patient's overall prognosis and potential quality of life outcomes. Conservative management may lead to the progression of the hemorrhage and exacerbation of symptoms. It does not actively address the source of the problem (the clot) and may not result in significant improvement in the patient's condition. There is a possibility of further neurological deterioration and long- term complications. Palliative Care and Comfort Measures (pain management, symptom control, emotional & psychological support, spiritual & existential support, assistence with ADLs, end-of-life planning, family support, bereavement support) Palliative care focuses on providing comfort and symptom management for the patient. It ensures that the patient's end-of-life wishes are respected, if applicable. It may be considered if the patient's overall prognosis is extremely poor and further interventions are unlikely to yield significant benefits. This option does not directly address the underlying cause of the hemorrhage. It may be challenging for the family, as they have expressed a strong desire for aggressive intervention. It requires careful communication and support to ensure the family's understanding and acceptance of the approach. 4. Action plan Prioritized Actions Reason/Justification Surgical Evacuation of Clot: This option may be considered if the patient's overall condition and prognosis suggest a reasonable chance of benefiting from the procedure. Factors to consider include the patient's age, pre-existing health conditions, size and location of the clot, and the feasibility of the surgical intervention. If the potential benefits of clot removal outweigh the associated risks, surgery may be a viable option. Justification: The justification for recommending surgical evacuation would be based on the potential to relieve pressure on the brain, prevent further deterioration, and improve the patient's condition. However, the risks of death during surgery and the possibility of severe permanent neurological deficits should be carefully weighed against these potential benefits. Conservative Management: If the patient's prognosis is poor, surgical intervention may carry significant risks, or the patient's wishes are unclear, conservative management may be a suitable option. This approach focuses on supportive care, monitoring, and symptom management to ensure the patient's comfort and well-being. Justification: The justification for choosing conservative management would be based on the understanding that aggressive interventions, such as surgery, may not significantly improve the patient's outcome or quality of life. Instead, the emphasis is placed on providing comfort, minimizing suffering, and maintaining the patient's dignity. Palliative Care: Palliative care may be considered if the patient's condition is deemed to be terminal or if the risks and burdens of invasive interventions outweigh the potential benefits. In such cases, the focus shifts towards ensuring comfort, symptom management, and providing psychosocial and spiritual support. Justification: The justification for recommending palliative care would be based on the understanding that the patient's prognosis is extremely poor and further interventions are unlikely to provide meaningful benefits. This option respects the patient's autonomy and prioritizes comfort and quality of life during the remaining time. Ultimately, the decision regarding the most appropriate option should be made through a collaborative process involving the medical team, the patient's family, and the patient if possible. It should be based on a comprehensive evaluation of the patient's clinical condition, prognosis, values, and preferences. The medical team's expertise, along with open and honest communication, will be crucial in guiding the decision-making process and determining the best course of action for the individual patient in this complex and sensitive situation. CASE 2 Adam is a 12-year-old boy being treated for osteosarcoma of the arm in the paediatric oncology unit. Although he initially responded well to treatment, he has suffered a relapse and now has widespread metastatic disease. His parents have been told about his relapse and a further cycle of chemotherapy, with the hope of prolonging his life by a few months, has been suggested. The chances of cure are negligible and the side effects likely to be very significant. His parents have considered the options and decided they would like him to have further chemotherapy. However, they are adamant that they do not want Adam to be informed that his cancer has spread or that he is likely to die even with the additional chemotherapy. They wish to protect him and are very worried that telling him will cause him great distress. The doctor and medical team has encouraged the parents to involve Adam in decision-making and explained that families are encouraged to discuss things honestly with their children, even when the prognosis is terminal. However, his parents insisted on not allowing doctors to disclose the medical information and prognosis to Adam, and continue making plans with him for the following year and telling him he needs further chemotherapy to ‘get better’. What should doctor do in this situation? Clinical Ethics Worksheet 1. Identify the facts Medical Indications Patient Preferences Adam, pasien berusia 12 tahun, mengidap osteosarcoma pada lengannya dan saat ini kankernya telah bermetastasis. Saat ini, Adam sedang dirawat di unit onkologi pediatri. Adam telah melewati beberapa tahap kemoterapi dan direncanakan untuk mengambil kemoterapi lanjutan. Walaupun kemungkinan untuk sembuhnya sudah tidak cukup signifikan, tetapi kemoterapi lanjutan ini dapat memperlama masa hidup Adam, setidaknya beberapa bulan. Keputusan pasien terkait kemoterapi lanjutan tidak jelas diberitahukan dalam kasus di atas. Namun, Orang Tua Pasien telah menyetujui bahwa akan tetap dilakukan kemoterapi lanjutan meskipun kemungkinan sembuh dari kanker bisa dibilang tidak signifikan. Orang tua pasien tidak ingin pasien mengetahui efek samping dan output dari pengobatan ini agar pasien tidak putus asa akan penyakit yang dideritanya. Orang tua pasien hanya ingin pasien merasa ‘berhasil’ telah melewati beberapa tahan kemoterapi dan hanya butuh beberapa kemoterapi tambahan untuk akhirnya ‘sembuh’. Quality of Life Contextual Features Pada kasus di atas telah disebutkan bahwa harapan hidup dan kesembuhan pasien sudah bukan menjadi prioritas utama meskipun dengan kemoterapi tambahan. Namun, dengan dilakukannya kemoterapi tambahan pasien dapat memperlama masa hidupnya selama beberapa bulan terlebih pasien Pada kasus Adam, Adam sebagai pasien tidak memberikan keterangan secara jelas apakah ia menerima atau menolak kemoterapi tambahan. Adam juga tidak diberitahukan pertimbangan-pertimbangan keberlanjutan pengobatannya. Seluruh keputusan berada di tangan orang tuanya. memiliki keluarga yang supportif. 2. Determine the conflicts Description of Conflicts/Issues Conflicting Ethics Principles/Values Isu pada kasus Adam adalah tidak terlibatnya Adam, pasien kanker, dalam pengambilan keputusan terkait keberlanjutan pengobatannya. Seluruh keputusan pengobatan Adam berada di tangan Orang tuanya tanpa sepengetahuan Adam sendiri. Konsep shared decision making process tidak terlaksana sepenuhnya disini. Kebimbangan terjadi antara apakah harus tetap tidak melibatkan pasien dalam pengambilan keputusan pengobatan sesuai dengan keinginan keluarga pasien (mementingkan aspek beneficial dan paternalism) atau tetap melibatkan pasien dalam mengambil keputusan meskipun keluarga pasien tidak menyetujuinya (mengedepankan aspek autonomi dan pelaksanaan decision-making yang baik). 3. Explore the options List of All Possible Options/Alternatives Strength Weakness Tetap tidak melibatkan Pasien tetap merasa memiliki Pasien tidak diberikan pasien dalam proses harapan hidup dan less stress. kebebasan memilih terutama decision-making. hal yang berkaitan dengan kesehatan dan keberlangsungan hidupnya. Hak autonomi pasien dikesampingkan. Melibatkan pasien dalam Pasien memiliki kesempatan proses decision-making. untuk mengambil keputusan yang berkaitan dengan keberlangsungan hidupnya. Meskipun dalam kasus ini, pasien masih di bawah umur, pasien tetap memiliki hak autonomi akan tubuh dan hidupnya sendiri. Ketidaksiapan orang tua/wali pasien akan keputusan yang diambil pasien tidak sesuai dengan harapan mereka. 4. Action plan Prioritized Actions Melibatkan pasien dalam proses decisionmaking. Reason/Justification Meskipun Adam masih di bawah umur, Adam masih memiliki hak autonomi dan hak asasi manusia terkait tubuhnya sendiri. Adam mempunyai hak untuk tahu keberlangsungan pengobatannya akan seperti apa. Peran tenaga kesehatan dalam kasus seperti ini adalah menjelaskan hal-hal yang berkaitan dengan kondisi kesehatan pasien sesuai dengan kapasitas pemahaman pasien beserta keluarga. Tenaga kesehatan juga harus bisa menjelaskan apa saja pros dan cons dari seluruh opsi yang dapat diambil kedepannya. Hal ini diperlukan untuk meminimalisir miskomunikasi antara tenaga kesahatan, keluarga pasien, dan pasien itu sendiri serta agar shared decision-making terlaksana dengan baik.