Q1. End-of-Life Counselling (5 Marks)

Definition

1. Goals of EOL Counselling

• Elicit and respect the patient's treatment preferences and values
• Clarify prognosis honestly and compassionately
• Discuss goals of care: cure vs. comfort vs. quality of life
• Facilitate advance care planning (living will, healthcare proxy, DNR/DNAR orders)
• Address unfinished personal, family, financial, and spiritual matters

2. Communication Skills - What Patients and Families Need

• Honesty with compassion - patients deserve truthful prognostic information
• Listening actively - understanding fears, hopes, and values
• Avoiding medical jargon - use plain language
• Assessing understanding - "tell-back" method to confirm comprehension
• Acknowledging emotions - do not rush past grief, anger, or denial

• Paternalistic - physician decides (least appropriate)
• Informative - physician presents facts, patient decides alone
• Shared decision-making - physician and patient decide together (preferred)

3. Components of EOL Counselling

A. Prognostic Communication

• Prognostication in terminal illness is imprecise but necessary. Scoring tools (APACHE, SAPS in ICU settings) give probabilistic estimates.
• Phrases like "time-limited trials" allow a structured reassessment rather than a binary choose-or-refuse conversation.

B. Advance Care Planning (ACP)

• Initiated ideally before functional decline
• Documents: Living Will (instructional directive), Durable Power of Attorney for Healthcare (proxy directive)
• Establishes: DNR status, preferred place of death, organ donation wishes, wishes about artificial nutrition, mechanical ventilation

C. Symptom Management Counselling

D. Withholding and Withdrawing Life-Sustaining Therapy

1. Beneficence - relieving suffering may be more beneficial than sustaining life
2. Non-maleficence - painful interventions unlikely to help may cause more harm
3. Autonomy - patients may refuse unwanted treatments
4. Justice - fair allocation of scarce resources

E. Emotional and Spiritual Support

• Acknowledge the patient's fear of death, loss of control, and concern for family
• Involve chaplaincy, social work, and bereavement counsellors
• Support for the family both before and after death (bereavement care)

4. Settings for Dying Patients

• ICU - most patients in developed countries die following withdrawal of life support
• Hospice/Palliative care unit - focused entirely on comfort
• Home - preferred by many patients; requires family support and community services
• Research shows patient preferences for place of death are frequently unmet, highlighting the importance of early, explicit counselling

5. Special Considerations

• Surrogate decision-making when the patient lacks capacity: surrogates use (a) substituted judgment - "what would the patient have wanted?" or (b) best-interests standard - what is objectively best for the patient
• Cultural and religious beliefs - must be explored and respected
• Paediatric EOL - decisions involve parents/guardians, but children with capacity should also participate in decisions appropriate to their understanding

Q2. Informed Consent - Issues and Informed Refusal

Informed Consent - Definition and Basis

• 1914 - Schloendorff v Society of New York Hospital: Every adult with capacity has the right to determine what can be done to their own body
• 1957 - Salgo v Trustees of Leland Stanford Hospital: First use of the term "informed consent"; established that physicians must inform patients of risks, benefits, and alternatives - not merely obtain a signature

Elements of Valid Informed Consent

1. Disclosure - The physician must provide information about:
   • Nature of the proposed procedure
   • Risks and benefits
   • Alternatives (including no treatment)
   • Expected outcomes
2. Comprehension - The patient must understand what has been disclosed
3. Voluntariness - The decision must be free from coercion or undue influence
4. Capacity - The patient must have decision-making capacity
5. Authorization - The patient gives an explicit (usually written) agreement

Competence vs. Capacity

1. Can the patient receive and understand treatment information?
2. Does the patient have insight about the disorder and treatment options?
3. Can the patient logically compare risks and benefits?
4. Can the patient communicate a choice?

Special Issues in Informed Consent

A. Premedication and Capacity

• Premedication does not automatically invalidate consent
• Pain and anxiety can themselves impair capacity; treating them with opioids or anxiolytics may actually improve consent capacity
• Each case must be assessed individually

B. Vulnerable Populations

• Elderly patients - cognitive impairment may be overestimated; capacity must be individually assessed
• Children - legally incompetent below age 18 in most jurisdictions, but many have functional capacity; they should be included in discussions. "Emancipated minor" doctrine allows exceptions
• Mentally ill patients - mental illness alone does not negate capacity
• Biases: Studies show capacity assessments are more likely to classify female and non-White patients as lacking capacity, reflecting implicit bias

C. Language and Communication Barriers

• Hearing loss, expressive aphasia, and language barriers can create false impressions of incapacity
• Certified interpreters, not family members, should be used

Informed Refusal

• Patients have the right to make "bad" decisions (from the physician's perspective) if they have capacity and adequate information
• Functional capacity must be judged separately from the perceived quality of the decision itself
• Refusal may reflect deeply held values (dignity, independence, religious belief) rather than impaired judgment

Refusal on Religious Grounds - The Jehovah's Witness Example

• Many JW patients refuse blood transfusions on religious grounds
• The physician must have a thorough, documented preoperative discussion directly with the competent patient (not surrogates)
• A physician who cannot comply has an ethical obligation to find an alternative caregiver
• Courts strongly support competent adults' right to refuse blood products
• Transfusion of pediatric JW patients by court order is common but is evolving as bloodless surgical alternatives improve

Responding to Refusal

1. Ensure the refusal is truly informed (patient understands consequences)
2. Explore the reasons - often values-based, not capacity-based
3. Do not challenge competence simply because you disagree with the decision
4. Document thoroughly
5. Seek ethics committee consultation for difficult cases
6. Respect the refusal if capacity is confirmed

End-of-Life Context: Informed Refusal of Life-Sustaining Therapy

• Substituted judgment - what would the patient have chosen?
• Best-interests standard - what is objectively best, given the patient's values?