. . First Case, synopsis.
1. Medical Decision Making Thomas S. Derr, Ph.D.
3. First Case, synopsis “Mrs. Klein” – age 89, admitted for cellulitis of the legs. Work-up shows anemia, maybe internal bleeding.
Pt. has history of good health and self-sufficiency, expresses distrust of doctors and hospitals.
She is asked to consent to a GI series to identify source of bleeding. Despite repeated requests, she refuses: “Darling, you look, you’ll find. No more tests or treatments. Just get me back on my feet so I can go home to my cats.”
Attending requests psychiatric consult, suggests pt. not capable of making decisions in her best interests and can’t be safely discharged.
Issue: autonomy vs. best interests
4. Second case, synopsis “Mrs. Rodriguez” age 69, transferred from nursing home semi-comatose, in respiratory failure (and other problems). Put on ventilatory support in ICU.
After several weeks care team recommends a trach, to get off the vent – safer, more comfortable. Pt. unresponsive, daughter gives consent.
Pt. unexpectedly becomes more responsive, but ENT attending says endotracheal tube makes it impossible to know what she’s trying to communicate. And anyway she lacks capacity. He’s for the trach as in her best interests.
Pt. asked yes/no questions, and head nods or shakes show she approves the trach.
Issue: Is this adequate consent by the pt. had her daughter not already consented, or would a higher level of capacity be required to refuse the procedure with the daughter’s involvement?
5. Third case, synopsis “Mrs. Stern” age 74, widow living alone, admitted for repair of hip fracture. Has mild dementia, but gives apparently adequate consent for surgery.
Post-op, pt. is increasingly agitated and confused. Now needs transfusion, but unable to discuss, indicates daughter, who gives the necessary consent.
Scheduled for rehab, then return home. Care team encourages her to execute advanced directive now for future use if dementia increases.
Issue: If she lacks capacity to make care decision now (the transfusion), does she have capacity to make advanced directive? Different levels of capacity again.
6. Fourth Case, synopsis “Mrs. Stack,” age 67, admitted for rectal bleeding, chronic renal insufficiency, and other problems. Alert, capacited. But two weeks later has cardiopulmonary arrest, resuscitated, intubated, unresponsive.
Needs emergency dialysis. Son, who is health care proxy, gives permission. But she has in past refused dialysis because a daughter died of heart attack while on it.
Pt.’s mental status improves. On vent, she indicates nonverbally, and strongly, that she wants no further dialysis. Her son wants it for her, eventually wears her down, and she reluctantly agrees.
Issue: Is her consent now valid?
7. Fifth Case, synopsis “Mr. Porter,” age 52, a mailman, with advanced diabetes and gangrene in lower extremities. Family says he’s resisted seeking medical attention for fear of amputation, which he would refuse.
Surgeon concludes only amputation of left foot will save pt.’s life, while aggressive removal of diseased tissue in other foot might spare that one. She seeks his consent thus:
“Mr. Porter, we need to take you to the operating room to take away all the dead tissue on your feet. If we don’t do this, the infection will continue to spread and you could die. Don’t worry, we do this all the time in cases like yours.”
Issue: Valid consent?
8. Sixth case, synopsis: “Mr. Silver,” age 39, with prostate cancer. Physician says cancer is virulent, recommends radical prostatectomy. Pt. fears side effects (incontinence, impotence), wants radiation instead.
Physician says long-term survival 30-40% better with prostatectomy and side effects can be treated later. Pt. still refuses.
Pt.’s wife privately tells physician she doesn’t care about side effects, “just want[s] him alive. We could have many good years ahead of us if he has the surgery.”
Issue: Conflict between what pt. wants and wife wants, and physician’s obligation to each, affecting how he communicates the medical situation.
9. Seventh Case, synopsis “Mr. Jenkins,” age 28, chronic renal disease, on dialysis for several years, failing, needs kidney transplant. Has a wife, pregnant, and a 3-year old son.
Only family member compatible for donation is 19-year old brother, who doesn’t want to do it, as it would require him to give up his football scholarship to college.
Family members apply intense pressure (“How can you be so heartless?” “You’re no better than a murderer.”) and the brother agrees to be a donor, telling the surgeon he has no choice, lest his brother die and his family hate him.”
Issue: Evaluate his consent.
10. The Foundation: Autonomy The premise behind informed consent and truth-telling
Rooted in desire for control over our lives
Not an absolute right.
Succeeded traditional medical paternalism
Bred in an individualistic culture
Limits on individual self-determination
11. The Immensity of the Capacity Problem “The biggest problem in medical ethics today.”
Awaits all of us.
12. Decisional Capacity in Adults The broad spectrum of capacity/competence
Measures of capacity:
-- A mental status exam and its limits.
The capacity decision is
-- Ability to understand one’s condition
and treatment consequences
-- Formulation of goals or values
13. Other considerations:
- Judgment of capacity often depends on results of the choice.
- Does it depend on agreement with medical staff’s choice?
- Danger of labeling patient “incompetent”
- Need for reflection time
14. Surrogates When needed
Who are they?
- Knowledge of patient’s desires may be imperfect
- Tendency to impose own values
- A shared decision: good but invites conflict
- When surrogate’s decisions should be challenged
15. Advanced directives Problems:
- Few people have them.
- Current condition may not have been foreseen.
- Too vaguely worded, with bad consequences
- Change of mind in new circumstances. May be overridden if conflicts with best interests.
- Back it up with health care proxy.
16. Standards for decision making for incompetent patients “Substituted judgment” vs. “best interests”
- Substituted judgment requires knowing what patient would want
- If patient never competent, substituted judgment is harder, and approaches best interest
- Best interest is a complex quality of life judgment.
-Interests other than the patient’s?
17. Informed consent Opposed to the Hippocratic ethos (benevolent deception, paternalism)
But now the standard, part of the revolution in doctor/patient relation
Cardozo’s dictum: “Every human being of adult years and sound mind has the right to determine what shall be done with his own body,” and thus the right to full knowledge required to decide.
18. Required by Patient Self-Determination Act, 1991
It’s legal, but does it really happen?
19. Elements of informed consent:
- Disclosure of everything in patient's best interest to know. How much? “Full disclosure” vs., “prevailing medical practice”
- Comprehension: patient must understand, the “reasonable person” standard. Adequate disclosure.
- Voluntary, not unduly influenced
- A competent patient
20. Objections to informed consent:
- Patient can’t understand complex info
- Patient may choose for medically trivial reasons
- Doctor’s explanation can’t be value neutral
- Disclosure of risks can be harmful
- Many patients don’t want to be involved
- Obtaining consent is an empty ritual
21. When is informed consent not required?
- Public health emergency
- Medical emergency
- Patient incompetent and no valid proxy
- Under the “therapeutic privilege.” Trumps autonomy.
- When patient waives it.
22. Clinical Case One: “Mrs. Dunn” Jehovah’s Witnesses blood transfusion: She has a living will, legally enforceable in the particular state, admitted for surgical repair of hip fracture. Surgeon says surgery necessary and may require blood transfusion.
Pt.’s “will” refuses blood transfusion. She has “moderate dementia” now.
Her son is her health care proxy, and he says, Go ahead with surgery and transfusion. She can’t know now, and the main point is to save her.
What should be done?
23. Clinical Case Two: Mrs. Barnes Pt. admitted from nursing home with mild heart attacks and acute renal failure. Is “confused and agitated.” Daughter is health care proxy, with son as alternate.
Has living will saying she doesn’t want dialysis if terminally ill or permanently unconscious.
Attending recommends a few dialysis treatments to improve kidney function, maybe clear her mental status, while extent of heart damage is assessed. Pt. unable to consent. The proxy is for dialysis, the alternate is not, based on the living will. Conflict between living will and proxy.
24. Clinical Case Three: Mrs. Miller Pt. is 88, admitted in respiratory distress. Does well, soon ready for discharge, but home situation (husband with dementia, son with psychiatric problems) unable to care for her. Pt. apparently neglected, hence continual readmission to hospital in critical condition.
Another son is proxy, but lives elsewhere and doesn't want to get involved.
Pt. has always refused nursing home, but staff thinks that’s the only safe discharge plan.
25. Clinical Case Four: Ms. Powell Pt. age 35, HIV+, history of IV drug abuse, lives alone. Admitted with cough, fever, flank pain. In hospital for a while, and staff suspects visitors are bring her heroin. Danger of death from overdose, because she’s receiving methadone. If visitors barred, she’ll sign out AMA.
Can staff refuse to treat pt. who won’t follow treatment plan and puts herself at risk?
Shunt for hemodialysis proposed, but could become drug pathway.
26. Clinical Case Five: Mrs. Andrews Pt. is widow, age 77, admitted to ER filthy, malnourished, dehydrated. Has multiple complications, but surgery and physical therapy make discharge possible.
Lives alone, but son and family in same building may be stealing from her Social Security check.
Care team recommends nursing home as she can’t care for herself. She refuses, wants to go home and be near her children and grandchildren. Psych consult says she unable to form judgment about her discharge plan.
27. Clinical Case Six: Mr. Jeffers 58-year-old has diabetes, peripheral vascular disease, and other problems. Needs amputation of one foot either below or above the knee. He refuses amputation and also diagnostic tests.
His capacity difficult to assess because he is so uncooperative. At one point he signed consent for below-the-knee amputation, but then refused the tests needed to proceed.
His cooperation will be necessary for success. Does he lack decisional capacity? How to proceed?
28. Clinical Case Seven: Mrs. Daws Pt. is 57 with stage IV breast cancer, chronic schizophrenia, and mild retardation. Her PCP says she understands her terminal condition and is prepared. She comes to ER with respiratory distress but refuses intubation. Intubation will not benefit her long term, and once intubated she won’t be weanable. But she has also said she wants to live as long as possible. Should her refusal be honored?
29. Clinical Case Eight: Mrs. Charles Pt. is 47, developed overwhelming sepsis and multiorgan failure after work injury. Her condition deteriorates, and it is determined that amputation of both hands and feet is necessary to save her life.
She’s sedated, unable to give consent. Her family united in believing she wouldn’t want to live with the amputations and would reject surgery even if death resulted. But when sedation is lightened, she becomes alert and insists on the surgery in order to live.
Is there a failure in the decision process here?