1. Difficult Decisions:Ethics & End of Life Care Suzana Makowski, MD MMM FACP Director of Palliative Care Services & Education Cancer Center UMass Memorial Healthcare & UMass Medical School

2. Goals

3. Dissonance & Dyads

4. Dyad 1: Clinician-patient/family

5. Dyad 1: Clinician-Patient/family 42 year old Syrian immigrant with metastatic non-small cell lung cancer, intubated for post-obstructive pneumonia. Septic shock on maximal pressor support. Now with multiorgan failure. Family present: wife, brother, parents. “Do everything.” What are the ethical issues?

6. Dyad 1: Clinician – patient/family Futility Hippocrates advised his students "to refuse to treat those who are overmastered by their diseases, realizing that in such cases medicine is powerless." Nonmaleficence Autonomy Benifecence Justice

7. Dyad 1: Clinician-patient/family Clinician Patient Futility • Autonomy • Non-maleficence Withholding • Withdrawing IHI: Underuse • Misuse • Overuse

8. Dyad 1: Clinician/patient-family “Linger for our son…”

9. Dyad 1: Clinician – patient/family:Please don’t tell 58 year old Saudi gentleman admitted with new onset, severe back pain, with known metastatic prostate cancer. Cancer progressing despite maximal therapy. Family says “don’t tell.” Patient says “I don’t want to know.” Principle of autonomy – adding cultural sensitivity

10. Dyad 2: Conflict within clinical team

11. Dyad 2: Conflict within clinical team

12. Dyad 2: Conflict within clinical team Camille: 52 year old cyclist Bike-car accident Sunday morning resulted in massive thoracic injuries, facial injuries, bilateral intracerebral contusions/bleeding. Renal failure, hypotensive on multiple pressors, intubated Trauma intensivist: “he is stabilizing and getting better” Neurosurgeon: “he shows no signs of neurologic improvement.”

13. Dyad 2: Conflict within clinical team What is the source of conflict? What is the ethical dilemma? How do we define improvement? Clinically Defining goals of care: for whom? What other opportunities were missed? Trauma intensivist: We can stabilize him to leave ICU, the hospital. He can live. Neurosurgeon: May be stabilized hemodynamically, but without meaningful neurologic improvement. Family: We know he won’t walk or bike again, but will he be able to make jewelry again?

14. Optimal care at end-of-life: what is it? Dr. Robert Martensen: “But when you look at Medicare overall half the money that we spend in this country on Medicare is spent on patients in the last six months of their lives. And if we were providing some kind of wonderful existence, then one could make the case but as I have written about and as I certainly experienced, and I gathered you’ve experience and many others, these last six months are not, they’re often agonizing and very unsatisfying for all concerned.”

15. Dyad 2: Conflict within clinical team Early family/interdisciplinary and multidisciplinary team meetings. Goals of care defined by family, and then interpreted to clinical decisions. What is meaningful life for this person? What legacy does he want to leave? (organ donation, long-term NH placement) Role of healthcare proxy: to define goal of care, not to make specific clinical decisions.

16. How do we talk about this? “Inquiry before advocacy” Do you want us to do everything or just …? …only? We will do everything. The question is, what kind of everything? Identify cultural or religious influencers. Involve other members of interdisciplinary team. Don’t forget the chaplain to role in decision-making. The good physician treats the disease; the great physician treats the patient who has the disease. William Osler

17. Dyad 3: Life and death

18. Dyad 3: Life and death“keep me alive whatever the cost” 52 year old patient with post-polio syndrome, adenocarcinoma of the lung. Full code.

19. Dyad 3: Life and death“Doctor, help me die.” “Doctor, she doesn’t want to live like this…” 65 yo woman with a history of non-small cell lung cancer presenting with worsening mid-back pain, left hip pain, and weakness of her lower extremities. T2 spinal cord compression due to met, not responding to high-dose dexamethasone or radiation. Surgical resection of T2 lesion. Now also with severe movement related pain of left leg. Admitted to ICU for opioid overdose. IV lidocaine infusion started for intractable pain. Pleuritic pain broke through lidocaine/fentanyl due to likely PE. Persistent bacteremia.

20. Dyad 3: Life and death 32 year old gentleman with cerebral palsy admitted with aspiration pneumonia. Decision made to shift goals of care to comfort measures. Patient was NPO. All medications, IVfluids including antispasmodics were stopped. Morphine drip started at 2mg/hour IV with order to titrate for comfort. 36 hours later: Morphine 96 mg/hour. Exam: myoclonus, agitation, hyperalgesia. What went wrong?

21. Dyad 3: Life and death 62 year old woman intubated for COPD exacerbation. Respiratory status further compromised by severe muscle wasting and cachexia. Failing weaning attempts due to fatigue/weakness. Option: tracheostomy or extubation. Extubated to BiPAP: transfer to home with hospice services arranged from ICU. BiPAP with respiratory therapist waiting for patient at home. Lived for 3 months. Mostly off mechanical ventillation.

22. Dyad 3: Life - death Ethical issues: Withholding/withdrawing interventions, euthanasia, PAS, palliative sedation, symptom management at end of life. CMO ≠ continuous morphine only

23. Dyad 3: Withholding/withdrawing care: palliation vs. hastening death

24. SUMMARYEthics & dissonance in EOLC: Keats The ability to hold and cherish opposites in one’s mind at the same time. The ability to live in uncertainties, mysteries, doubts, without any irritable reaching after fact and reason. Coulihan: If we postpone or ignore care in order to irritably search for additional data, or avoid the patient when we experience uncertainties, then we don’t practice effective medicine. To cure when possible, to comfort always – University of Indiana School of Medicine To prevent premature death, to alleviate suffering, to practice non-abandonment.

25. “You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.” - Dame Cicely Saunders