240820P - PALLIATIVE CARE (Case Scenarios)

Presentation at a workshop for Palliative Care Fellows held at the Faculty of Medicine, on 20/08/2024 by Professor Omar Hasan Kasule Sr. MB ChB (MUK), MPH (Harvard), DrPH (Harvard), Chairman of the Human and Medical Ethics Committee at King Abdullah bin Abdulaziz Teaching Hospital and member of the Ethics Committee at King Fahad Medical City. 

 

Why Palliative Care?

• Palliative care is resorted to when clinical evidence indicates no net benefit from life support or conventional treatment.
• The benefit-harm balance is considered; we should not be oblivious to the possibility of harm from palliative care to the patient and the family.
• What are the limits of palliation? How much medical/surgical intervention should be allowed in palliative care?

 

Concept of Good Death:

• The concept of a good death is a motivation for improving palliative care.
• Whereas death is inevitable, much can be done to make the death process as comfortable as possible.
• The comfort may be physical, involving pain relief and general tender loving care.
• It may also be psychological, involving allaying anxieties and fear of death among the terminally ill.

 

Concept of Pleasant Death:

• Terminal patients are resigned to their fate and are no longer concerned about the routines of life and the anxieties of living and achieving that prevent them from thinking of loftier and nobler objectives.
• They realize that they cannot make any more material achievements (wealth, power, and fame), nor can they have any major impact on the world and its affairs.
• They therefore have time for themselves to reassess their past in an objective and detached way and with no pressure or haste.
• The terminally ill can forgive those who wronged them. They can afford to be generous to their enemies. They can seek forgiveness for any harm they caused others. And finally, and above all they can make peace with their creator.
• In terminal illness, noble human qualities appear: Patience and resilience in facing pain, Calmness in the presence of adversity, Victory against adversity and tribulations, and Realization the hereafter is near and is better than the earth; prophets given a choice choose the hereafter.

 

Palliative Care: Ethical & Legal Issues:

• Deficient decision-making capacity: Advance statements, Proxy decision-makers, decisions by their waliy, if no relatives?
• Decisions on interventions: nutrition, hydration, pain control, infection treatment.
• Balance between pain control and social life, the Double effect of analgesics.
• Requests for assisted death should be refused.
• Telling the whole truth to the patient requires judgment and balance between benefits and harm.
• Privacy and confidentiality must be maintained.
• Caregivers must respect the patient’s autonomy if he is competent.

 

Challenges of Palliative Care:

• Site of palliative care: home, hospice, hospital. Resource allocation.
• Decision-making, autonomy, paternalism, shared decision-making.
• Advanced medical/surgical interventions in palliative care. Antimicrobials.
• Palliative sedation, morphine, and respiratory depression
• Communication with patients and family, truth-telling, and disclosure
• Hydration and nutrition for terminal patients with aspiration risk
• Prognosis as basis for palliative referral
• Parenteral nutrition for patients who refuse food, hydration, and thirst

 

Case Scenario – Autonomy and Site of Palliative Care:

• A 90-year-old in the intensive care unit with stage 4 widely disseminated cancer and multi-organ failure was told by the doctors that there was nothing they could do to reverse the course of the disease and that they could only provide symptomatic treatment. He asked to be discharged to die at home. His children objected, saying that he needed complex nursing that they could not provide at home. He was finally admitted against his will to a private hospice that provided palliative care at great expense.

 

Case Scenario – Family at the Site of Palliative Care:

• An 86-year-old grandmother with Alzheimer’s disease is incontinent of urine and feces, cannot feed herself, is losing weight, and is developing bed sores. She is cared for by her 90-year-old husband, who refuses to let anyone touch her. She shouts whenever a live-in nurse approaches her. The husband is willing to get her admitted to a hospice if he is also admitted with her. He is competent and can take care of all his daily activities.

 

Case Scenario – Limits of Care at Site of Palliative Care:

• A 60-year-old hemiplegic has diabetic foot, advanced lung cancer, a colostomy, and bed scores. He needs renal dialysis three times a week. His son suggests that he should move into a hospice because transporting him 3 times a week is difficult. The hospice refuses because it does not want to install dialysis equipment, arguing that that is not palliative care. The patient does not want to leave his home.

 

Case Scenario – Aggression at the Site of Palliative Care:

• A 20-year-old with unstable diabetic control, diabetic foot ulcers, and bipolar disorders was refused hospital admission, but he does not want to go home because he cannot control his aggressive behavior towards his parents and sisters, who care for him. He applies to be admitted to the hospice where he can be taken care of by professionals. The hospice staff are not sure they can handle him.

 

Case Scenario – Aggression at the Site of Palliative Care:

• A 50-year-old man with extensive testicular cancer metastases unresponsive to chemotherapy and radiotherapy is in severe pain, not controllable by IV morphine. He is verbally and physically abusive to hospital staff. Attempts have been made to control his aggressive behavior using drugs. There is no more active treatment at the hospital, and his family cannot take care of him at home and asks for his admission to hospice care. Hospice care staff are not sure.

 

Case Scenario – Family and Decisions on Site of Palliative Care:

• A 65-year-old competent man with inoperable metastasized colon cancer is cared for at home by his wife and daughter. He is on morphine for pain control but still experiences pain. He suffers from constipation when the dose is increased. He is afraid of falling and fracturing his hip so does not move much. He is also afraid that his teenage daughter may abuse his morphine. The wife suggests hospice care as the best alternative. The patient refuses.

 

Case Scenario – Family and Decision on the Site of Palliative Care:

• A 75-year-old man with advanced lung cancer was cared for at home by a palliative team. He has suddenly lost his appetite for all types of foods and drinks. He is competent and refuses all types of artificial feeding, such as IV or nasogastric tube. The family has asked to have him moved to the hospice.

 

Case Scenario – Decision Making, Autonomy, Paternalism, Shared Decision-Making:

• A 70-year-old grandmother with inoperable cancer refused to be admitted to the hospital or the hospice. She was competent and understood the implications of both home and institutional care. She had no one at home to take care of her. Her children decided to go for her and took her to the hospice against her will.

 

Case Scenario – Hydration and Nutrition for Terminal Patients with Aspiration Risk:

• A cancer patient in severe pain and constant vomiting, and aspiration, asked the palliative physicians to stop nutrition and hydration. He wanted to avoid aspiration. He also reasoned that starvation would hasten his death to avoid further suffering from severe pain.

 

Case Scenario – Prognosis as Basis for Palliative Referral:

• The palliative care team was called to the surgical ward to see a terminal patient whom surgeons wanted to refer to palliative care because there were no beneficial procedures they could offer. The palliative team asked the surgeons, “How much longer do you expect the patient to survive?’ The surgeons replied that, according to their experience of similar cases in the past, expected survival was less than a day. The palliative team refused to accept the patient.

 

Case Scenario – Parenteral Nutrition for Patients Who Refuse Food, Hydration, and Thirst:

• A competent patient with terminal, incurable lung cancer was in severe, uncontrollable pain. He was severely depressed. He refused food and water and started losing weight. All efforts to persuade him to take orally failed. The family and the physicians decided to feed him parenterally against his wishes. He kept pulling away the tubes, and discussions were held about physically restraining him.

 

Challenges of DNR:

• Incidental events in DNR
• Social CPR.
• DNR for congenital anomalies incompatible with life.
• DNR for a different diagnosis.
• Patient-initiated DNR.
• DNR vs Euthanasia.
• DNR vs DNT.
• Transferring a patient to a physician who is unwilling/unable to comply with the order.

 

Case Scenario – Incidental Events with DNR

• Doctors wrote a Do-not-resuscitate (DNR) order for an 80-year-old grandmother with disseminated untreatable ovarian cancer. Her family objected vehemently when told of this decision and sought its reversal. Before the dispute was resolved the patient collapsed after an episode of acute pneumonia unrelated to her original condition. The nurses following the DNR order did not call the resuscitation team.

 

Case Scenario – DNR: Incidental Events

• Doctors wrote a Do-not-resuscitate (DNR) order for an 80-year-old grandmother with disseminated, untreatable ovarian cancer. Her family objected vehemently when told of this decision and sought its reversal. Before the dispute was resolved, the patient collapsed after an episode of acute pneumonia unrelated to her original condition. The nurses following the DNR order did not call the resuscitation team.

 

Case Scenario – DNR: Incidental Events

• A university professor with previous episodes of transient stroke had written a directive and had witnessed that if he lost consciousness, he did not want to be resuscitated. Years later, he was brought to the hospital unconscious from head injuries sustained in a car accident. The doctors, reading his directive in his shirt pocket, decided not to resuscitate him, but his wife insisted that he be resuscitated.

 

Case Scenario – Social DNR:

• A patient on DNR was arrested, and the attending physician carried out chest compressions half-heartedly so that family members could see that efforts were made to save life. He eventually stopped and declared death.

 

Case Scenario – DNR for Anencephaly:

• A DNR order was written at birth for an anencephalic infant. When the infant was arrested on the third day of life, the order was followed, and no resuscitation was carried out.

 

Case Scenario – DNR for Severe Cardiac Malformations:

• A DNR order was written for a newborn with heterotaxia syndrome (AVSD, double outlet RV, rudimentary LV, aortic atresia). She developed a severe chest infection, leading to respiratory arrest. The nurses did not call the CPR team.

 

Case Scenario – DNR for Severe Cardiac Malformations:

• The family, on being informed at 18 weeks of gestation that the fetus had hypoplastic left heart syndrome, preferred comfort care and did not want any intervention, including resuscitation or surgical intervention. The physician wrote a DNR order at the request of the family, but was himself doubtful. The nurses did not call the CPR team when the baby was arrested 5 hours after birth.

 

Case Scenario – DNR for Quality of Life:

• Intending to relieve the patient and the family from further suffering, a physician recommended DNR for a 1-month-old newborn who had severe neurological, cardiac, and lung anomalies with no chance of a quality adult life.

 

Case Scenario – DNR with Stoppage of Nutrition and Hydration:

• Nurses stopped nutrition, hydration, or antibiotics for an infant who had a DNR order written after several failed resuscitation attempts and waited patiently for the moment of death.

 

Case Scenario – DNR and Physician Conscience:

• An infant with a DNR order was transferred from the ICU to a lower-level facility because of a bed shortage. The receiving physician was opposed to DNR, whatever its underlying diagnosis, and immediately canceled the order.

 

Case Scenario – Euthanasia:

• A 70-year-old man with advanced cancer, with severe pain not responsive to morphia, asked the doctor to kill him and save him from suffering. The doctor refused, claiming that he could not commit illegal homicide. The doctor also refused to give the patient any advice about suicide. On the patient’s insistence, the doctor agreed to stop hydration and nutrition to enable slow death.

 

Case Scenario – Life Support Withdrawal for Non-Medical Reasons

• A 90-year-old with multi-organ failure and clinical signs of brain stem death was on life support and was occupying the last available bed in the ICU because the doctors were afraid to disclose death to the family and had many vocal and angry members. However, when 50 survivors from an air crash site were brought, the doctors decided to withdraw life support from the old man to free up at least one ICU bed.

 

Case Scenario – Life Support for Organ Donation:

• An ICU doctor kept a brain stem dead patient on artificial life support to maintain the vitality of his organs until the arrival of the transplant team to harvest the heart and lungs donated by the patient while still conscious in favor of his cousin who was born with severe congenital abnormalities and would die without the transplantation.

 

Case Scenario – Research in Palliative Care

• A pharmaceutical company wanted to accelerate research on a new cancer drug that had been found effective but with too many adverse effects in animal studies but had not been tested on humans. The company’s principal researcher asked the palliative care unit to try the drug on their patients. He reasoned that since they were terminal, they would not mind consenting to a drug with many known adverse effects.

 

Case Scenario – Palliative Care at Home

• A 90-year-old in the intensive care unit with stage 4 widely disseminated cancer and multi-organ failure was told by the doctors that there was nothing they could do to reverse the course of the disease and that they could only provide symptomatic treatment. He asked to be discharged to die at home. His children objected saying that he needed complex nursing that they could not provide at home. He was finally admitted to a private hospice that provided palliative care at great expense.