Lynette Cederquist, M.D. Clinical Professor of Medicine Chair, Ethics Committee

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1 Lynette Cederquist, M.D. Clinical Professor of Medicine Chair, Ethics Committee

2 Patient has had a prior stroke, with severe neurologic damage 6 months ago. She has minimal awareness, cannot talk or swallow. She has to be fed through a feeding tube. She has been residing at a skilled nursing facility for the past several months. She has now been readmitted to the hospital with pneumonia because of aspiration. She has been in the ICU for over a month on a ventilator. She also now has kidney failure requiring dialysis

3 The doctors meet with the family to explain that the patient is not improving, and is now dependent on staying in the ICU to be kept alive She has multiple adult children and grandchildren involved in these discussions. The doctors believe that it is becoming futile to continue treating her aggressively, as she will not ever improve enough to leave the hospital.

4 Her family is in conflict, with 2 daughters acting as primary decision makers they disagree with each other The patient never completed an advance directive

5 The doctors? The family? Which daughter should the doctors listen to?

6

7 If we look up the word, "futility" in the Oxford English Dictionary, we learn that it means, "leaky, vain, failing of the desired end through intrinsic defect." What then is "failing of the desired end" in the case of medical futility?

8 Quantitative definition: If there is less than: 5% chance? 1% chance? Of achieving a benefit, would be considered futile to try. Limitations: 1. Where do we set the cutoff, 1%? 5%? who decides this? In many situations, we don t have exact outcome data available too many variables.

9 Qualitative: When there is no reasonable chance of achieving a benefit Limitation: Rely on subjective terms, such as reasonable. Who decides what is reasonable? There is no universally accepted definition of medical futility!

10 All policies and laws addressing medical futility determinations focus on conflict resolution: Always clarify prognosis and goals of care what are we hoping to accomplish and what are the chances we can accomplish our goal? Are we still hoping for a cure? Are we hoping to extend survival? Are we hoping to improve the patient s quality of life? Are we hoping to relieve suffering?

11 Is there still a realistic chance of a cure? Are we just trying to prolong survival for a patient who cannot be cured? (chronic disease management) Are we hoping to improve the patient s quality of life? Get them out of the hospital Improve function Are we trying to relieve suffering?

12 In medicine, there is always more treatment that can be rendered, but if all we are going to accomplish is to prolong the dying process, and/or add to the patient s burden of suffering, then treatment becomes inappropriate, non-beneficial, and futile!

13 After a month, the family continued to insist on full aggressive treatment despite no evidence of improvement. The patient was too ill to arrange transfer to any kind of chronic care facility. She was essentially permanently ICU dependent. The nurses were very distressed because she appeared to be suffering tremendously, with no end in sight.

14 Must ask why? Mistrust? Hope for a miracle? Guilt? The daughter from N.Y. syndrome Secondary gain?

15 Patients of racial minority and lower socioeconomic status have much higher rate of wanting to continue aggressive treatments against recommendations of the physician(s) Thought likely to be driven by mistrust of the medical system They suspect discrimination The doctors could help me/my family member, but they don t want to spend money on me because I have Medi-Cal

16 Suggest that the patient/family seek input and guidance from a person they trust to represent their best interests: Community leader Religious leader Trusted physician

17 In the past when patients sought a miracle they went to church and prayed to God; today they come to the hospital and demand it of the physician. - Defining medical futlilty. L.J. Schneiderman Some religious beliefs interfere with the patient s capacities to understand and appreciate the facts relevant to specific treatment decisions. Tales Publicly Allowed: Competence, Capacity, and Religious Belief, Martin,A.. Hastings Center Report, Jan.-Feb.2007

18 Patients have the right to refuse treatments offered based on their particular religious beliefs, but they do not have the right to demand non-beneficial or inappropriate treatment based on those beliefs. Usually reasonable to agree on a time limited trial of treatment

19 Most often, the family member demanding everything has been disconnected from the patient. Driven by guilt Wants to make up for lost time Demonstrate their love for the patient

20 Clarify who is representing the patient s wishes Treatment decisions should not be based on family members wishes Is or was the patient able to designate their wishes? I m tired of being poked and prodded I just want to go home to see my cat I feel I ve had a good life, but I m done

21 Is the family member speaking for the patient gaining something by extending survival? Pension, etc Somewhere to live

22 One daughter cared for the patient at home for 5 years. Stated that her mother repeatedly told her: If I am ever terminally ill, don t let the doctors keep me alive on machines, don t let me suffer too long. For the past 2 years, when that daughter became ill, a second daughter moved in and took over lived with patient full time, shut out rest of family, wouldn t let them see or talk to the mother. Currently, she is living in the patient s house, and suspected of cashing her social security checks by the other siblings. Patient never completed and advance directive or designated which daughter was her D.P.O.A.

23 Second daughter claims her mother instructed her keep me alive no matter what, and she is just honoring her mother s wishes Accuses the physicians of wanting to murder her mother because Medi-Cal is not paying them enough to keep treating her. Threatens to bring her lawyer to family meetings

24 Who is representing the patient s real wishes? Does the second daughter have secondary gain by keeping her mother alive longer? Fear of lawsuit practice defensive medicine by continuing all treatment? Increasing moral distress among ICU nurses care for the patient who are convinced all they are doing is inflicting more suffering on the patient

25 If this patient had completed and advance directive, documenting her wishes regarding end of life care, and designating which daughter she wanted as her D.P.O.A. for healthcare, this situation might have been avoided.

26 Survey of general population, 70% indicate their preference would be to die at home in the presence of their loved ones. In reality, 80% of people in the U.S. die in a hospital.

27 If despite clarifying diagnosis, prognosis, and goals of care, the patient or family still wants aggressive treatment: Obtain second opinion regarding futility determination Request ethics consultation If second opinion and ethics consultant support the physicians determination that treatment is futile or non-beneficial, the physician is not obligated to continue treatment (per hospital policy) Patient/family must be given reasonable time to seek transfer to another facility, or proceed with legal action.

28 Family continued to insist on aggressive life sustaining treatment for their mother They rarely visited her over the next month The patient became a little more responsive, but could not talk because of the breathing tube/ventilator One day she mouthed the words Please let me die to the nurse and one of her doctors. Daughter was present, but claimed that her mother had been coerced by her doctors to say this. Continued to insist they keep her mother alive, and threatened legal action if they did not.

29 Ethics consultant, critical care physicians, and nursing met with family again to try and achieve consensus to transition to comfort care Family continued to insist on full life sustaining treatment Family informed that patient would be taken off the ventilator in 48 hrs Patient removed from ventilator 48 hours later died peacefully with family at her bedside

30 Can we mediate these conflicts? Not the same as mediating a fight over money or property Must promote shared decision making neither side has complete unilateral power Emphasize shared goals We all want to do what we feel is best for the patient Focus on transitioning to the best comfort care possible not just stopping treatment

31 "Whenever the illness is too strong for the available remedies, the physician surely must not expect that it can be overcome by medicine." "To attempt futile treatment is to display an ignorance that is allied to madness."

32 Questions?

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