ETHICAL AND MEDICO-LEGAL ISSUES IN END-OF-LIFE CARE.pptx

End life care is to important in the ethical and medico legal cases

1. ETHICAL AND MEDICO-LEGAL ISSUES IN END-OF-LIFE CARE DATE: 21-07-25 PRESENTED BY

2. INDEX Introduction to End of life care Ethical foundations in End of life care Ethical issues in practice Medico-legal framework in india Palliative care approach Therapies for alleviating suffering Psychosocial and family support Challenges and barriers in india Case scenarios and conclusions References

3. WHAT IS END-OF-LIFE CARE? Definition : End-of-life care refers to the support and medical care given during the time surrounding death, especially for patients with terminal or advanced chronic conditions. Purpose : Enhance quality of life, not prolong it unnecessarily Provide relief from pain and distressing symptoms. Respect patient wishes and dignity Scope : Physical, emotional, spiritual and social care Delivered by a multidisciplinary team Can be provided at home, hospital, hospice, or long-term care centers

4. WHO NEEDS END OF LIFE CARE? Terminal illness Advanced cancers – lung, pancreas, brain End stage of liver or kidney failure Progressive neurological disorders – ALS, Parkinsons Elderly population People with multiple comorbidities Decline in activities of daily living Other groups Severe cognitive decline – dementia Long term ICU patients with no prognosis for recovery Indicators : Frequent hospitalisations Significant weight loss Poor functional status

5. GOALS OF END-OF-LIFE CARE Symptom relief : Pain, dyspnea, fatigue, nausea, agitation Dignity in dying : Respect patient’s belief, wishes and cultural practices Emotional and spiritual support : Reduce anxiety and provide peace of mind Family support : Prepare care givers for death and grieving Decision support: Help patients and families make informed choices

6. IMPORTANCE IN TODAY’S HEALTHCARE SYSTEM Increase in chronic illness : Rose in cancer, diabetes, heart failure and COPD Aging population : India’s elderly population [ 60+] population expected to double by 2050 Health care costs : Futile treatments increased economic burdens on families and system Emotional toll : Families face trauma and guilt Need for holistic care*

7. THE FOUR PILLARS OF MEDICAL ETHICS Principle Meaning Example in EOL care Autonomy Respecting patient’s right to make decisions Patient refusing ventilator support Beneficence Acting in the best interest of the patient Giving morphine for pain relief Non maleficence “DO NO HARM” avoiding unnecessary suffering Not giving futile chemotherapy Justice Fairness in resource allocation Equal access to palliative care

8. ETHICS OF AUTONOMY “It’s not how long you live ; it’s how well you live” Defintion : Autonomy is the right to accept or refuse medical interventions. Legal backing : supported by supreme court EOL scenarios : Refusing CPR [DNR Orders] Declining ICU admission or ventilator Opting for comfort care instead of life prolonging treatment Challenge : balancing autonomy with family or societal pressure

9. DISCLOSURE DILEMMAS IN EOL SITUATIONS ETHICAL DILEMMA IDEAL APPROACH Truth telling may cause despair Use empathetic, gradual disclosure Withholding truth may be seen as deception Balance honesty with compassion Cultural angle : In India families often request doctors not to tell the truth to patients

10. WHEN CONTINUING TREATMENT BECOMES HARMFUL Futile treatment : interventions unlikely to benefit patients – chemo in end stage cancer with organ failure Ethical conflict Doctor’s duty – avoid unnecessary suffering Family’s expectations – try everything Best practice – honest communication + shared decision making Case scenario A 90 year old with end stage heart failure placed on ventilator despite poor prognosis – outcome : prolonged suffering

11. CONFLICTS IN DECISION MAKING Common conflicts : Patient v/s family: patient wants palliative care ; family insists on ICU Doctor v/s family : doctor recommends withdrawal; family wants all efforts Solutions : Advance directives Ethics committee in hospitals Family meetings

12. INFORMED CONSENT AND SHARED DECISION MAKING Informed consent : Patient must understand diagnosis, prognosis, and treatment options. Must be voluntary, competent, and adequately informed. Shared decision making : Collaborative discussion between patient, family, and physician. Important in end-of-life choices like ventilation, feeding tubes, ICU stay. Challenges in EOL; Emotional families Cognitive decline in patients Medical jargon confusion

13. ADVANCE DIRECTIVES AND LIVING WILLS Advance directive [AD] : Legal document stating patient’s healthcare preferences if they become incapacitated. Living will : Specific type of AD focused on life- sustaining treatments [no ventilator] Ethical strengths : Respects patient autonomy even in unconscious states. Reduce family conflict. Legal backing in India : 2018 Supreme court verdict legalized passive euthanasia with valid advance directives.

14. DO-NOT-RESUSCITATE [DNR] ORDERS Definition : A DNR order instructs healthcare not to perform CPR if breathing or heart stops. Ethical justification : Avoid futile suffering and prolongation of dying. Respect informed patient wishes. Documentation : Must be written, signed by physician. Ideally backed by patient/family agreement and/or advance directive. Challenges : Poor awareness among families. Misconceptions [ e.g. you’re killing the patient ]

15. PALLIATIVE SEDATION V/S EUTHANASIA ASPECT PALLIATIVE SEDATION EUTHANASIA Definition Use of sedatives to relieve suffering Deliberate act to end life Intent Relieve intractable symptoms Cause death Legality [India] Allowed with consent and guidelines Only passive euthanasia permitted Ethical view Morally acceptable [non-maleficence] Ethically debated Important note : Sedation is used only when symptoms are unbearable and no other relief works.

16. CULTURAL AND RELIGIOUS VIEWS ON EOL Hinduism : Emphasizes karma and natural death Life-prolonging interventions are often seen as interfering with fate Peaceful death is ideal. Islam : Life is sacred, only allah decides death DNR and passive euthanasia accepted if prognosis is poor and treatments are futile Euthanasia is forbidden Christianity : Suffering may be redemptive Withholding extraordinary means [e.g. ventilator] is acceptable Active euthanasia is morally wrong

17. TYPES OF EUTHANASIA IN INDIA Type Definition Status in India Active euthanasia Deliberate act to end life [e.g., lethal injection Illegal Passive euthanasia Withdrawal/withholding of life sustaining treatment Legal Legal status Active : Not permitted under IPC [considered homicide] Passive : Legalized in 2018 with strict guidelines. Ethical view : Passive euthanasia aligns with “letting die” not “causing death”.

18. A HISTORIC LEGAL TURNING POINT Supreme court verdict – common cause v/s union of India Date : 9 march 2018 Verdict highlights : Legalized passive euthanasia Recognized the right to die with dignity as a part of article 21 [ right to life] Allowed Advance Medical Directives [ living wills ] under strict conditions Court’s logic : Forced artificial life support = violation of dignity Impact : Empowered patients Encouraged ethical and legal reforms in EOL care

19. ADVANCE MEDICAL DIRECTIVES [AMD] What is AMD? A legal document stating a person’s healthcare preferences in case of terminal illness or unconsciousness. How to create an AMD [per 2018 verdict] Stored securely; family, physician and hospital must be informed.

20. ROLES OF MEDICAL BOARDS AND FAMILY IN DECISION MAKING Primary medical board : Treating doctors and hospital – appointed specialists Certify irreversible condition and futility of treatment Secondary medical board : Set up by district collector/state authority Reconfirms diagnosis and need for withdrawal Role of family : Can support or challenge AMD Must be involved in decision making Legal safeguards : Protection from IPC 306/309 [ suicide laws ] Documentation is key

21. MENTAL HEALTHCARE ACT, 2017 – EOL PROVISIONS Key provisions : Patients with mental illness can make an Advance Directive for future care Recognizes patient’s autonomy and capacity Relevance to EOL : Legal backing to honour decisions of patients with chronic mental illness [ dementia, schizophrenia ] Includes right to : Refuse specific treatments Choose caregivers and mental health establishments Ethical strength Combines respect for autonomy with legal structure

22. IMPORTANT CASE LAWS AND PRECEDENTS Aruna Shanbaug [2011] : SC allowed passive euthanasia Triggered nationwide debate on mercy killing Common cause v/s Union of India [2018] : Legalized passive euthanasia and advance directives Landmark case shaping current policy Gian Kaur v/s State of Punjab [1996] : Rejected active euthanasia But acknowledged dignity in dying as a principle Impact : Encouraged ethical clarity Pushed for legislative reforms Shaped the future of compassionate EOL care

23. What is Palliative Care? WHO definition : An approach that improves the quality of life of patients and their families' facing problems associated with life – threatening illness. Key purposes : Relief from pain and other distressing symptoms Support to live as actively as possible Psychosocial and spiritual support Enhancing quality of life, not prolonging dying

24. DOMAINS OF PALLIATIVE CARE

25. MULTIDISCIPLINARY TEAM ROLES

26. PALLIATIVE V/S CURATIVE V/S HOSPICE CARE FEATURE CURATIVE CARE PALLIATIVE CARE HOSPICE CARE Goal Cure illness Relieve suffering End of life comfort care Timing Any stage Alongside treatment Last 6 months of life Place Hospital/clinic Hospital/home/hospice Hospice/home Life prolonging Yes Sometimes No Overlap exists : Palliative care can be introduced early while curative efforts continue.

27. TIMING OF PALLIATIVE INVOLVEMENT MISCONCEPTION Palliative care : care only when death is near REALITY Should begin early in chronic or life limiting illness Benefits of early integration : Better symptoms control Reduced hospital admissions Improved patient and caregiver satisfaction Allows timely planning of end of life wishes Diseases that benefit : Cancer, CHF, COPD, CKD, Neurodegenerative disorders

28. MODELS OF PALLIATIVE CARE Home based palliative care Comfort of familiar environment Family involvement Telemedicine, mobile teams Hospital based palliative units : For acute symptoms Provides 24/7 medical support Hospice care : Dedicated facilities for final months/weeks Focused on comfort and dignity No aggressive treatments

29. MANAGING COMMON DISTRESSING SYMPTOMS Pain : Most common and feared symptom in terminal illness Assess using validated scales ; address physical, emotional and spiritual pain. Breathlessness : Subjective sensation of difficult breathing Use of fan to provide good ventilation, oxygen and low dose opioids. Fatigue : Often under recognized; affects quality of life Management includes energy conservation technique, treating underlying causes and psychosocial support.

30. STEPWISE STRATEGY FOR PAIN RELIEF

31. MANAGING DYSPNEA, DELIRIUM, NAUSEA SYMPTOMS CAUSES TREATMENTS Dyspnea COPD, CHF, Anemia, Anxiety, panic Opioids Fan – directed airflow to the face Repositioning and relaxing Delirium Common near end of life Organ failure Metabolic imbalances Hypoxia Sleep deprivation Assess for reversible causes such as infections, drugs, metabolic derangements Medications : haloperidol is preferred Nausea GIT causes [ constipation, stasis] Metabolic [uremia, hypercalcemia] Vestibular disturbances Psychological factors Determine cause Treat with appropriate antiemetics Consider non drug methods [small meals, avoid triggers]

32. PALLIATIVE SEDATION Definition : Use of sedative medications to reduce awareness in patients with refractory and unbearable suffering. Indications : Uncontrollable pain, dyspnea, agitation, or existential distress Patient is imminently dying; all reversible causes addressed Medications : Midazolam : short acting benzodiazepine Phenobarbital : longer acting option

33. NON-PHARMACOLOGIC THERPAIES

34. SPIRITUAL AND EMOTIONAL CARE Active listening : Being present, allowing patients to express fears, regrets and hopes Validates their experience and restores dignity Rituals : May include prayer, blessings, forgiveness rituals, or life review Offer comfort aligned with cultural and spiritual values Role of spiritual care providers : Chaplains, religious leaders, or trained volunteers Spiritual distress can manifest as existential suffering, loss of meaning

35. COUNSELING THE PATIENT AND FAMILY

36. COMMUNICATION SKILLS- SPIKES PROTOCOL

37. FAMILY AS PARTNERS IN CARE Caregiving role : Physical role [feeding, bathing], emotional support, advocacy Caregiver stress and burnout are common – need for support and respite Shared decision – making : Families help interpret patient values and wishes Involve them early; maintain transparent, inclusive discussions Cultural sensitivity : Different cultures assign different roles in decision – making Be aware of who the key decision maker is [may not be the patient]

38. SUPPORT AFTER DEATH Grief is normal : Emotional, spiritual, and physical responses are part of mourning Complicated grief : Risk increases if death was sudden, traumatic, or relationships were conflicted Bereavement support : Calls or visits post death Offer counselling, peer support groups, referral to mental health professionals Cultural and religious practices : Honor rituals and customs that bring closure Healthcare team role : Express condolences; acknowledge loss Provide information about what to expect emotionally and practically

39. LACK OF AWARENESS OF PALLIATIVE CARE What people think palliative care is What it actually is “It means the patient is going to die soon” It focuses on improving quality of life – at any stage of serious illness “It’s only for cancer patients” It helps patients with cancer, organ failure, dementia, neurological conditions, etc. “It’s just giving morphine or sedating the patient” Pain management, emotional, social, and spiritual support – not just medications “It’s end of life care only” It can be given alongside curative treatment – right from diagnosis “It means we’re giving up on treatment” Its about active, holistic care focused on comfort and dignity

40. CULTURAL, RELIGIOUS, LEGAL AMBIGUITIES Cultural Beliefs : Talking about death is taboo in many communities Families may withhold prognosis from patient Religious Views : Beliefs in karma, rebirth, or divine will may affect acceptance of palliative care Practices at end of life must be respected Legal challenges : Unclear laws around advance directives and withholding/withdrawing life sustaining treatment. Fear among doctors of litigation when opioids are used

41. INSUFFICIENT TRAINING FOR DOCTORS Medical education gap : Most MBBS programs offer limited to no formal training in palliative care Few doctors feel confident in managing pain, breaking bad news, or discussing prognosis Lack of exposure : Palliative care often introduced only during oncology or terminal cases Solutions : Integrate palliative care modules into MBBS and PG curricula More MD/PG diplomas in palliative medicine

42. RESOURCE CONSTRAINTS – BEDS,OPIOIDS, MANPOWER Infrastructure issues : Few dedicated palliative care units in government hospitals Urban-rule divide – most services clustered in cities Opioid availability : Morphine access restricted by NDPS act [amended in 2014] Hospitals require special licenses; many avoid prescribing opioids due to legal fears Human resources : Shortage of trained palliative physicians, nurses, social workers, and counsellors Heavy workloads and lack of incentives deter specializations

43. REAL LIFE CASE EXAMPLE – ETHICAL + LEGAL DILEMMA Case example : A 68 year old man with metastatic lung cancer is in severe pain and distress. The family insists on continuing full ICU care, including ventilator support, although the patient had previously told the doctor he didn’t want aggressive interventions. The doctor is unsure whether to follow the family’s wishes or honor the patient’s earlier statement. Ethical dilemma : Autonomy v/s family wishes Quality of life v/s prolonging life Verbal advance directive [legally unclear in India] Legal consideration : No written advance directive Legal protection for physicians under 2018 Supreme court judgement [Common Cause v/s Union of India] is still under complex implementation

44. DISCUSSION – WHAT WAS DONE RIGHT/WRONG ? What was done right : Pain was acknowledged and initially addressed Prior conversations with patient documented [partially helpful] What could have been better : Lack of formal advance directive Inadequate family counselling about prognosis and patient’s wishes No ethics committee consultation or documentation of decision – making Teaching points : Begin advance care planning early Importance of written directives and documentation Encourage open communication between healthcare providers and families

45. TAKE HOME MESSAGES – COMPASSION>CURE Palliative care is not about giving up – it’s about choosing what matters most Communication, empathy, and respect are just as vital as medications Ethical and legal awareness empowers healthcare teams to act with confidence and care Early integration of palliative care improves both quality of life and decision making Support for families is not optional – it’s essential “ Cure sometimes, relieve often, comfort always” - Hippocrates

46. CONCLUSION Ethics : Respect for autonomy, non – maleficence, beneficence, and justice Legal framework in India : NDPS Act for opioids 2018 Supreme court ruling on passive euthanasia and advance directives Palliative care principles : Holistic approach – physical, emotional, social , spiritual Early initiation, individualized care plans, interdisciplinary team work Closing line : “ Palliative care is everyone’s business – from the bedside to the law book”

47. REFERENCES World Health Organization : definition and global palliative care strategy Indian Association of Palliative Care [IAPC] guidelines NDPS Act [Amendment 2014] Common Cause v/s Union of India [2018 Supreme Court Judgement] SPIKES Protocol Pallium India and CanSupport Publications

48. THANK YOU