Dr. Eli N. Root Distinguished Lectureship Ethical Issues in Cancer Care: from First Diagnosis…to the End-of-Life

1. Dr. Eli N. Root Distinguished LectureshipEthical Issues in Cancer Care:from First Diagnosis…to the End-of-Life St. Luke’s Grand Rounds Monday October 29, 2012 Jeffrey Spike, Ph.D. Samuel E. Karff Professor McGovern Center for Humanities and Ethics UTHealth (Houston) jeffrey.p.spike@uth.tmc.edu

2. Conflicts of Interest • None. • No one helped me write any of the content in this presentation, neither I nor my family have any investments in any product mentioned, nor do I suggest off-label uses of any medications.

3. Objectives • Review some pearls on breaking bad news and informed consent • Improve timing of when to refer patients to palliative care or hospice • Clarify the reasons for withholding and withdrawing feeding tubes and other LSMT

4. Informed Consent Warning Signs • If all of your patients agree with you, you may be giving biased information • Sometimes a refusal can be a sign of success • If you let others get your consents, they may not be as thorough as they should • Even if telling more won’t change the decision, some information could still be helpful to the patient to plan their life better (e.g. visit a loved one before having surgery or starting chemo)

5. Patients Who Make ‘Bad Decisions’:Refusal of Beneficial Treatment • Refusing treatment is always one of the options for patients with capacity • The side-effects of tx may not be worth it • There are also some religious beliefs such as Jehovah’s Witnesses and Christian Science that influence medical decisions • Asymmetry: patients cannot make you do something that is not indicated, but they can stop you from doing something that is

6. Bad News Telling: The Six Step Approach • Step 1. Getting started (quiet, private, protected) • Step 2. Find out how much the patient knows • Step 3. Find out how much the patient wants to know • Step 4. Sharing the news empathically • Step 5. Responding to the patient’s feelings • Step 6. Planning and follow-up • From: Buckman, R. How to Break Bad News. Baltimore, 1992; Johns Hopkins University Press • Education for Physicians on End-of-Life Care; 1999;AMA

7. Step 3: Determine how much the patient wants to know • Example questions • Some people prefer that I go into great detail, while others prefer that I just present the big picture. What would you prefer? • Is there someone else you’d like to have with you when we talk about your treatment choices? Or someone you prefer I talk to instead of with you?

8. Step 4: Sharing the news empathically • Examples • “The test results are not what we hoped for Mr. Smith, they indicate that you have colon cancer. I wish things were different.” (STOP) • “I’m afraid I have bad news, Mrs. Smith. The biopsy shows that the lump in your breast is cancerous.” (STOP) • “Mrs. Jones, I’m sorry to have to tell you this, but your cancer has returned and the tumor has grown.” (STOP)

9. Step 5: Responding to the patients feelings and reactions • Be prepared for a range of responses • Affective—anger, sadness, grief, etc. • Cognitive defenses—denial, blame (displacement), intellectualization, etc. • Flight-fight response (can’t hear you: their own heartbeat can drown out your voice) • If you don’t understand the patient’s response, ask them for clarification. • Respect the patient’s feelings. Don’t try to “rescue” the patient from strong emotions.

10. Step 5: Responding to the patients feelings and reactions • PEARLS skills—especially: • Partnership– “This is something we’ll tackle together.” • Empathy– “I can see you’re frightened” • Legitimization– “Anyone would be scared by this news.” • Support– “I’ll be sure to follow-up with Dr. Miller about his plan so I can answer any questions you might have.”

11. Step 5: Responding to the patients feelings and reactions • Don’t rush the patient • Follow the patient’s lead in deciding when to move on (don’t intrude on their reaction) • Listening shows more empathy than talking (“Knowledge speaks but wisdom listens”) • Studies show most docs only wait 18 seconds before ‘redirecting,’ and most patients would only talk 45 seconds if not interrupted!

12. Step 5: Responding to the patients feelings and reactions • While seeing the cup as half full, and encouraging them having something to look forward to is good, don’t encourage denial • If you do, then patient may feel mislead later • “Don't wish me happiness--I don't expect to be happy, it's gotten beyond that, somehow. Wish me courage and strength and a sense of humor--I will need them all.” ~Anne Morrow Lindbergh

13. “How much time do I have?” Discussing prognosis • Avoid giving too precise a time frame • Provide reasonable range (e.g. less than six months, or 6 mo-2 yrs) • Provide realistic reassurance and hopefulness • I will keep you informed • I will be available and supportive • We will do everything we can to make you as comfortable as possible • We will explore all treatment options • You may benefit psychologically, and perhaps even live longer, with group therapy and palliative care

14. Step 6: Planning and follow-through • Before they leave office, make follow-up appointment • Strongly encourage them to join a support group… • Fellow-travelers can say things you can’t, and know things you don’t… • Evidence is it can even increase survival

15. Step 6: Planning and follow-through • Later in the disease process, if it appears the prognosis is terminal… the goal is still to help patient live well in whatever time is left. • All patients die eventually, so caring for the dying is essential part of being a doctor. • And while no one wants to die, many people do achieve important things during this period. Having a realistic deadline can help them find purpose and set goals.

16. Common Reasons for Requests for Futile Treatment worth a frank discussion Slide 1 of 2 • Denial: Family can’t admit a terrible truth, that there’s nothing left to do that’s worth doing • Guilt: Family fears not doing all they can for loved one • Responsibility: Family feels they caused/contributed to the illness or injury • Love: Family not prepared to lose him/her • Socioeconomic: Poor/minority family doesn’t trust doctor’s diagnosis or prognosis (and often fear under-treatment/rationing from discrimination)

17. Common Reasons for Futile Treatment under your control Slide 2 of 2 • Denial: Doctor can’t admit there’s nothing he/she can do that’s worth doing • Guilt: Doctor fears not doing all he/she can for patient • Responsibility: Doctor feels he/she caused/contributed to the illness or injury • Love: Doctor’s identification with an educated or well-to-do patient causes over-treatment • Socioeconomic: Wealthy patient/family has sense of entitlement for anything money can buy (and w/ fee-for-service, this creates a conflict of interest)

18. Doctors too Can Make ‘Bad Decisions’ • Be reflective about your own values. Many physicians put more trust in medical treatment than it deserves; it may be a professional hazard. • Keep in mind that most Americans think doctors over treat patients at the end of life • Physicians’ denial can contribute to patients dying ‘bad deaths’ in hospitals instead of ‘peaceful deaths’ at home.

19. When to refer to palliative care orhospice • Average hospice patient gets two days to two weeks of hospice, when 6 months is paid for • Studies show one reason is physicians cannot predict death accurately until two days before, so… • Trying to predict death may harm your patients • Better: ask yourself if you would be SURPRISED if this patient died within the next 12 months. If not, then it’s time to bring up possibility of hospice or palliative care, and recommend one or the other. • Hospice is helpful for patients and their families

20. Can patients enter hospice too soon? • After six months, the hospice won’t kill them! • Some studies indicate hospice lengthens lifespan • If patient improves enough, they will be considered “graduates” • If patient still needs hospice, they can get a second six months • So answer is “No” patient cannot enter hospice too soon (no harm can result from it)

21. Palliative Care Hospice Cure Palliate Cure H

22. What can a physician group offer as an incentive to patients over a pure fee for service specialist model? • A promise of lifelong follow-up, and assurance of non-abandonment • Can include visits even if patient enters hospice • Can include a condolence letter to the family and perhaps attending the funeral • These can have an enormous positive impact, and be viewed as very valuable

23. Common Concerns • Legally required to “do everything”? • Is withholding treatment euthanasia? • Are you killing the patient when you remove a ventilator, or feeding tube? • If I try hard to relieve symptoms (e.g. pain, or shortness of breath) and the person dies, is that euthanasia?

24. Withholding vs. Withdrawing Treatment • Withhold = do not start treatment • Withdraw = stop treatments that aren’t achieving your goals • There is no ethical or legal difference • But - they feel different emotionally • One religious group distinguishes between them • Risk of treating them differently: failure to give potentially beneficial interventions a trial

25. Ethical Principles • Autonomy: • The ‘gold standard’ is called “substituted judgment”: ask what would she tell us to do if she awoke and knew she only had 15 lucid minutes? • Beneficence and Nonmaleficence: • Do the benefits outweigh the burdens of treatment? • The “Best Interest” standard • Remember we never “withdraw care.” We withdraw some invasive or toxic treatmentsbecause we care.

26. Some Pearls from Palliative Care • Start with large bolus for pain, to get control, then can titrate down. Don’t start low and try to increase slowly. • All patients should have a DNR order in the chart before they die; there’s no harm in it being there a week. Do not try to time it, or you risk doing it too late. • Hospice adds valuable services such as psychological help for the patient and for the family. • Malnutrition is natural analgesic and euphoric before it lowers the entire sensorium—a good, natural death • d/c IV hydration when you d/c artificial nutrition

27. The Right to Refuse Treatment • Patients have the right to refuse treatment • Does not depend on their condition being “terminal” • Though is often one of the ‘trigger’ conditions chosen for when a living will goes into effect • Informed consent: we cannot treat without permission • Anything a patient can consent to, they can refuse • So they can refuse any life-sustaining tx

28. Resuscitation (CPR) Tracheal intubation Surgery Dialysis Blood transfusions, blood products Steroids Artificial nutrition and hydration Antibiotics Pressors Future hospital or ICU admissions Pacemakers and defibrilators Life-Sustaining Medical Treatments

29. Include DNR discussion with Advance Directives • This involves patient, introduces shared decision-making paradigm, preferable to seeing DNR as a doctor’s order (unilateral) • 30%-40% of persons over 70 years old don’t want CPR even if the possibility of survival is good • Survival rate <7% for patients with cancer • Successful resuscitation should mean not just restoration of pulse and breathing or discharge from ICU; but discharge from hospital. • Physiological outcomes (of “successful” resuscitations): Brain damage – 2%, Rib fractures – 33%, Lacerated spleen or liver – 5% • Psychological outcomes: Major depression - >50%,Survivor expresses he or she would not want CPR again - >50% --Schneider AP, et al. “In-hospital cardiopulmonary resuscitation: A 30-year review.” J Am Board of FamPract 1993; 6:91-101

30. Myths About ANH • Prolongs life • Reduces suffering • Never say “Starvation” (and correct others who say it) • Decreases aspiration and other complications • It’s “Ordinary” care (not medical care) or else “Medically Necessary” care

31. Normal Dying (Natural Death) • Loss of appetite • Decreased oral fluid intake • Positive effects – analgesia & euphoria • Artificial nutrition and hydration may make situation worse: • Shortness of Breath (dyspnia) • Coughing/gurgling • Edema or ascites or third spacing • Nausea / vomiting / aspiration • Incontinence and UTI

32. Feeding tubes: Artificial Nutrition and Hydration • When a patient needs a PEG, it is also time to think about prognosis, and whether to get a referral for hospice and palliative care • Inability to swallow is as good a predictor of final year of life as inability to walk (unless there’s a reversible physical cause, like a recent stroke) • Remember almost all patients would prefer to die at home, not in a hospital. That takes planning (and deferring ‘the talk’ may make it impossible) • Never use the words “food” or “starvation”

33. ANH is a Medical Treatment • It requires medical intervention, including an surgery to place the tube (and informed consent) • It does not deliver food, but rather special mixed formulas and medication • It has burdens (side effects) that may outweigh the benefits, especially for those incapable of feeling hunger or thirst • For many patients it doesn’t even extend life • Hospice: ‘It is better to die dry than to die wet’

34. Weissman’s triad and the death spiral • The finding of a dying patient with a feeding tube, restraints and pulse oximetry (‘Weissman's triad’) • Set goal: no patients die with Weissman’s triad • Reason: Placement of feeding tubes has an in-hospital mortality of 15-25%, and one year mortality of 60%. Predictors of early mortality include: high age, CNS pathology (CVA, dementia), cancer-except early stage Head/Neck cancer, disorientation, and low albumin • Does ANH decrease risks? Nasogastric (NG) tube – 67% aspirated, 43% developed pneumonia, 66% pulled it out; Gastric (G) tube--44% aspirated, 56% developed pneumonia, 56% pulled it out - --Fast Facts and Concepts #85 . “Swallow studies, tube feeding and the death spiral.” Weissman, DE; February 2003. End-of-Life Physician Education Resource Center www.eperc.mcw.edu.

35. What if Family is Conflicted? • Often the family is certain the patient “wouldn’t want to live this way” but cannot stop ANH for emotional or religious reasons • Often there are differences of opinion between family members • Sometimes there is a long history of discord that comes out in this stressful period • Try to make everyone tell you what the patient would have wanted (better chance of agreement)

36. Culture and Medicine: the Patient • Each patient comes from a certain culture, and one must be sensitive to the variations in assumptions. It is up to the patient to decide which cultural norms to live by. • The best way to discover this is by talking to the patient, not the patient’s parents or adult children. There can be very large differences in cultural norms between first and second generation Americans.

37. Culture and Medicine: the Doctor • Everyone in this room is a member of two different cultures • First, you are a member, probably slightly diluted, of the culture your family belongs to • Second, you are a member of the medical culture • Neither of these is exactly neutral, neither is universal, and neither is always rational • Medical education teaches us to be non-judgmental, so able to overcome the biases of our familial culture • Sometimes we must overcome our medical culture too

38. Conclusions • When in doubt or facing differences with family or staff, first consider an open team meeting, and listen to the nurses who spend the most time with the patient and the family • Next, get a palliative care consult • Then, consider an ethics consult

39. More References • Back AL, Arnold RM, Baile WF, Tulsky JA, Fryer-Edwards K. Approaching difficult communication tasks in oncology. CA Cancer J Clin. 2005;55(3):164-77. • Back AL, Arnold R, Tulsky J. Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and Hope. 2009: Cambridge University Press. • Curtis JR, Engelberg RA, Wenrich MD, Shannon SE, Treece PD, Rubenfeld GD. Missed opportunities during family conferences about end-of-life care in the intensive care unit. Am J Respir Crit Care Med. 2005;171(8):844-9. • Halpern J. Empathy and patient-physician conflicts. J Gen Intern Med.  2007;22(5):696-700. • Levinson W, Gorawara-Bhat R, Lamb J. A study of patient clues and physician responses in primary care and surgical settings. JAMA. 2000;284(8):1021-7.