Negotiating the Land Mines of Do Not Resuscitate Orders

1. Negotiating the Land Mines of Do Not Resuscitate Orders Francis Degnin M.P.M., Ph.D. Department of Philosophy & World Religions University of Northern Iowa degnin@uni.edu

2. Objectives 1.  Describe legal and ethical issues dealing with DNR’s in various circumstances.  i.e.: a. Patient/family conflicts, i.e., the vague “do everything” directive b. Dealing with a DNR request after a suicide attempt c. Unusual requests (partial codes, etc.) d. Conflicts between patient autonomy and medical appropriateness. 2.  Describe hospital policies and procedures for dealing with: a. Who is responsible for code status b. DNRs existing prior to surgeries. 3.  Discuss strategies and issues for talking with patients about DNR orders.

3. Case 1: When Patient and Family Wishes Conflict? Your patient is male, elderly, in poor health, in the ICU for what is likely a terminal admission. While he doesn’t want to die prematurely, he explains that if his heart were to stop, he would just want to be kept comfortable and allowed to die. He requests a DNR order. The family adamantly objects, insisting that everything be done.

4. Questions? • What are your concerns? • What are the ethical issues? • What are the practical issues? • What do you want to ask?

5. Issues • Is the patient competent/decisional? • Is the patient consistent in her/his request? • Is the likelihood of a code immediate? • Is there time to try and bring the family around? • What is medically appropriate? • What is the relationship with the family? • What is the law?

6. The Law: Cruzan 1990 Competent adult patients, either directly or via a surrogate, have the right to refuse medical treatments, even if that refusal leads to their death. To treat a person against their will may be considered assault and battery and a violation of their civil rights. (Exceptions for ER and Paramedic circumstances)

7. When the Family Objects? • We normally accord a certain respect to the family of a dying patient. • That doesn’t mean their wishes should override those of the patient. • So, in a case where the patient’s wishes are clear, why do many health care institutions listen to the family and not the patient?

8. Cynical View: Fear of Lawsuits Some hospitals take the position that, if there is any sort of conflict, treat—that will play better both in the media and before a jury. “Peg him, trach him, ship him…”

9. Long Term Care View: If the patient becomes non-decisional… • The family may need to make future decisions. • If we damage that (trust) relationship, it may become harder to promote a good outcome for the patient.

10. What Actually Happened? • The patient was in the ICU for week before he coded. • He was still a full code at the time.

11. Case 1: Conclusion • If the patient is competent, it is his/her decision. • If the risk of a code is not immediate, it is appropriate to ask the patient for some (limited!) time to negotiate with the family and help ease their concerns. • Ideally, involve the patient in the conversation with the family. • This is a great case for ethics committee involvement—they can back up the patient, the physician, and help with the family.

12. Dysfunctional Motivations: Family 1. Guilt—some fear of what they will feel if they don’t believe that they have “done everything” to save their loved one. • “Miracle thinking”, the belief that they have to give God every chance to perform a miracle.

13. Dysfunctional Behaviors: US • We can be our own worst enemy—sometimes, even when we know the patient it going downhill, we wait and hope for the best, only discussing a DNR when it becomes absolutely necessary. - This does not allow the family to prepare emotionally. - They may feel ambushed. - Undermines trust

14. Dysfunctional Behaviors: US • Sometimes we allow an inappropriate family member to act as decision maker so as to “avoid” conflict. This can create “trouble” down the road. 5. Confusing a DNR with Do Not Treat.

15. Tips: Dealing with Guilt? Conversation—we may need to get at the reasons for what they’re asking. Family members sometimes develop “rationales” for gut emotional reactions…without realizing their real motivations. Pastoral Care and Ethics can help.

16. Reorienting the Conversation Get the family to focus on the patient’s wishes…i.e.: “I know that you love your father and want the best for him. But please understand, this isn’t about what you want for your father, it’s about what he would want for himself. Can you think of things that your father has said that suggest what he might want here?” Invite them to tell stories (including with one another) about their loved one…this can be a powerful tool.

17. False Choices = False Guilt If I present a DNR order as a neutral choice, many will perceive it as “I want your permission to give up on your loved one” or “I want your permission to kill your loved one.” Even the language, “Do Not Resuscitate” Order is deceptive—it implies, falsely, that we could resuscitate the patient, but choose not too. This may leave the surrogate with a false sense of guilt. We know that, in reality, a “DNR” is a procedure which we attempt, but like all such procedures, often fails. Consider the language of a “DNAR” Order—”Do Not Attempt Resuscitation”—it’s more accurate and less likely to inspire guilt.

18. Minimizing False Guilt If a DNR is medically appropriate, don’t present it as a “neutral” choice to the decision maker. Make it clear why a code is medically inappropriate (extreme suffering with little/no chance for a positive outcome.) Explain why you don’t want to put their loved one through this kind of suffering. Unless they object, offer it as information, not as a choice.

19. The “Do Everything” Directive Again, don’t offer a treatment as neutral which is not medically appropriate. Start by strongly affirming their directive, then add detail: “We are doing everything. We will continue to do everything that is medically appropriate, everything that has a chance to help your mother.” It might then be appropriate to offer a detailed discussion of the risks and side effects of a code, followed by something like: “Your mother is so sick that, if her heart were to stop and we were to code her, it would only result in a painful, difficult death. If this were my mother, I’d want her to die as pain free and as peacefully as possible. At this point, a code would merely extend her dying, not save her life.” I’ve even sometimes (though not often…it’s a judgment call) noted how, in some cases, a family who wanted to “do everything” to avoid one form of guilt was then left with the guilt of having put their loved one through a horrible death.

20. Miracle Thinking? • While I would never deny that miracles are possible, for many, this is really a form of denial. • However, whether it is a form of denial or a sincere religious belief, doesn’t always matter.

21. Miracle Thinking: Solutions • Get pastoral care involved. • Allow them to talk, to tell their stories, reorient towards the patient’s wishes. • Explain that while God has her/his own ways, we can only act in ways which are medically appropriate. • Depending upon the circumstances, I may raise the following questions: • If God really wants to perform a miracle, does he/she really need our help? • Isn’t putting a person on a machine is already “playing God.” If so, might not the act of taking them off (or deciding on a DNR) be to admit our limitations before God, allowing God (or nature) to take it’s course? • If the patient believes in heaven, and there is nothing left we can do to return them to a reasonable state of health, why should we keep them suffering rather than allowing them their heavenly reward?

22. Avoid “Ambushing” the Family • Develop a relationship with potential decision makers before the crisis event. Talk early, talk often. For example, revisit Advanced Directives during a patient’s yearly flu shot. 2. Enlist the family in the diagnostic process. Time can be your ally: Talk to them early about diagnostic indicators which they might also be able to observe. For example, for a patient on a respirator, show them the pressure and the O2 levels, explain how (and how much) the levels should be going down if the patient is making progress over time. If they don’t go down over several days, the family can see for themselves that the patient is not progressing.

23. Talking about DNRs 3. Avoiding beating around the bush…be sensitive, but make sure they understand. 4. Be sensitive to the fact that some patients may fear abandonment if they don’t “do everything” they believe their physician wants. - Clarify that “do not resuscitate” does not mean “do not care” or “do not treat.” - Explain that it’s just a single procedure which does not appear medically appropriate (or is against patient wishes.) - Be clear that you will still be involved in their care and comfort.

24. Confusion: DNR and Do Not Treat • A DNR is only a single procedure. • For example, a patient who is a DNR may be intubated for a pulmonary edema. • The intubation can also be refused. But if it is not part of an actual code, it does not violate the DNR. • Levels of Care/Treatment (One model) • Aggressive Treatments/Full Code • Supportive/aggressive/No Code • Supportive care • Comfort Care

25. Language Counts • In one case, an ICU nurse was doing an excellent job of explaining the “DNR” does not mean “do not treat”. But she kept referring to refusing the code as refusing “heroic measures.” • “Heroic” sounds like a good thing, so refusing it sounds like a bad thing. • Instead, speak of refusing “aggressive measures.”

26. Case 2: Medically Inappropriate Code Status: Fearful Patient Your patient is as 76 y/o male presenting with extreme shortness of breath and generally poor health. The DPAHC is held by his brother, also elderly and disabled, who is unable to come to the hospital. In phone conversations, the brother merely directs us to do “whatever we think is best.” Just before going on the ventilator, the patient was told that he would be unlikely to ever come off. He told the nurse that he wanted “everything done.” He appeared quite fearful. Two ICU nurses and the ICU attending expressed concern over the fact that the patient was a full code—even to the degree of asking why a “code” was so different than most other treatments.

27. Ethical Question Why do we allow patient’s to demand a code when it is clearly “futile” care?

28. AMA Code 2.035 Futile Care “Physicians are not ethically obligated to deliver care that, in their best professional judgment, will not have a reasonable chance of benefiting their patient. Patients should not be given treatments simply because they demand them. Denial of treatment should be justified by reliance on openly stated ethical principles and acceptable standards of care…” (emphasis added, 2006-2007)

29. Futile Care? • Confusion over the definition • NOT: No chance (impossible standard) (AMA code acknowledges that this concept of futility cannot be meaningfully defined.) • Refers to there being no “reasonable” chance of meeting the goals of care. • Greek Myth: Futilis

30. Medical Appropriateness: Reversed? Physicians are not required to offer treatments to patients which, according to the best evidence and their best medical opinion, offer little hope for achieving the goals of care. Yet in the case of a “code”, this practice is often reversed—we seem to require permission for a DNR even when the treatment offers no reasonable hope of benefit.

31. Why? • Positive Reason: • Death is permanent, so stabilize and decide later. (As with the ER and Paramedic exceptions, we are unable to access a patient’s competency and wishes.) • Only applies if the patient wishes are unclear prior to the code. • Negative Reason: • Fear of lawsuits (who will be around to sue?) • The AMA may not be there to back you up in the courtroom! • Marketing (bad publicity)

32. Impossible Situations? • Physicians are not required to perform procedures or treatments which are medically futile. • But there is a risk—anyone can try to sue. • Get the ethics committee involved. • Hospice? • Get a second opinion if appropriate. • Offer to transfer the patient if someone else will take over care. • Not everything can be fixed.

33. Tragic Choice? Assume that the patient’s wishes are unclear and the family insistent. You’ve made some progress limiting inappropriate treatments. You may choose to stay on the case, even with moral discomfort, because transferring the patient may result in losing all the progress and trust thus far earned with the family. Half a loaf is better than no bread

34. Moral/Psychological Discomfort? • Medical professionals are usually compassionate people. • They don’t enter the profession because they want to watch people suffer. • So how does one deal with having to watch a patient suffering unnecessarily on one’s watch?

35. Options? • In some cases, one can ask to be excused from the care of a particular patient. • Some health care professionals find other specialties within the profession. • Some, sadly, numb themselves.

36. Another Option • Accept and make a space to feel that discomfort. • Ask, what has it to teach me? • Take the fact that one sometimes goes to bed uncomfortable, questioning one’s involvement or decisions, as a sign that you’re awake, that you’re at least facing and trying to learn from the concrete demands of dealing with human needs. • Take a certain kind of peace in the fact that you are sometime uncomfortable—and therefore awake and growing.

37. Case 3: Partial DNRs? A 90+ y/o woman presents with a variety of medical problems, including COPD. She is on home O2 and has come in for shortness of breath. She requested a DNR, with one exception. She wants to allow intubation so long as it was expected to be short term. She was told that this was not allowed, that it was an all or nothing procedure. However, some of the nurses noted that this was not the case at all institutions. The ICU attending agrees.

38. Partial DNRs: Issues? • Can be very confusing to medical staff. • May be medically inappropriate. i.e., “Do everything but intubate me” • Can lead to mistakes in care. • Slippery slope: At what point do we stop?

39. There are Appropriate Exceptions I.e., The patient develops pneumonia and it is expected that a short term intubation will return the patient to baseline. In this case, as it is consistent with the patient’s wishes and medically appropriate, we should intubate the patient. Consider other, less invasive alternatives. I.e., a “chemical” code prior to actually coding.

40. To Avoid Confusion • There needs to be clear communication between the patient, care team, and other stake holders. • Typically, this will involve a condition which is expected to be resolved quickly, not a condition which is part of their underlying terminal illness. • We should discuss, in advance, what to do if the treatment does not appear to be effective. • To avoid confusion with staff, it may help to post a sign in the patient’s room indicating the unusual DNR status.

41. Best Option? • Don’t even call it a “Partial” DNR. • Simply recognize the sorts of procedures which can occur even with a DNR order. • The bottom line is that we are here to support patient goals within the context of medical appropriateness, not a blind adherence to a rule.

42. Case 4: Attempted Suicide Your patient is a 64 y/o former counselor suffering from bi-polar disorder and excessive clotting. Due to a state mix-up (not Iowa), he has had difficulty getting medications. Suffering from acute depression, he walked into a corn field and slit his wrists. Due to the untreated clotting disorder, he failed to bleed to death. He was taken to the state psych ward and put on a suicide watch. They left him his belt and only checked on him every 30 minutes. He hung himself.

43. DNR status? It is unsure to what extent, if any, the patient will recover his cognitive abilities. The family is considering a DNR. Might a DNR be appropriate in this case? If so, by what criteria?

44. Not Really Very Complicated • Complicating factors: • Attempted suicide • Patient is non-decisional • However, once the patient has been stabilized, the issue of the attempted suicide is no longer a significant part of the ethical discussion. • We make the decision on a DNR just as in any other case: • Given the current medical indications, • And the range of medically appropriate treatments • what would the patient, if competent, want?

45. Case 5: Confusion of Authority Your patient is a 78 y/o nursing home resident in declining health admitted to the ICU following surgery for a bowel obstruction. The patient lacks decision making capacity. Following an extended discussion with the patient’s long term physician, the family asked for a DNR. The patient’s primary care physician agreed and entered the order. When the patient’s surgeon discovered the order the next day, he called the family, insisted strongly that this was the wrong course of action, and changed the order (citing family compliance.)

46. Nursing Concerns • When physicians disagree, to whom should they listen? • Both patients and other care givers can be caught in the middle. • Some worried that the surgeon may have pushed the family into agreement.

47. Concerns over Roles • What is an “Attending of Record” • What is a “Consultant?” • Consult and Advise • Consult and Treat • How might confusion about these roles harm: • a patient/family? • Professional Relationships?

48. Inspired a Change in Policy at the Hospital in Question It is now required that there be clear communication and “hand offs,” in writing, for who is the attending. Both the former attending and the new attending must acknowledge the hand off. While other physicians may treat a patient, if there is a conflict or disagreement, the attending of record has the authority and responsibility for the patient.

49. Case 6: Surgery on DNR Patients • You are caring for a 24 y/o patient with severe MS, spinal bifida, paralysis of the lower limbs, and multiple other medical problems. The patient was brought from a nursing home to address the bowel obstruction. • While not seeking to die, the patient is generally decisional and has been a long term DNR. The surgeon insists on removing the DNR before surgery.

50. Why do surgeons usually insist on reversing a DNR during and around the time of a procedure? • Often, anesthesia effects can mimic or even induce aspects of a code. The surgeon wants to be able to address these issues. Do narcotics automatically render a patient non-decisional? • Even in the case of a true code, surgeon’s don’t want a patient dying on their table.