In part 1 of this article, which appeared in the February issue of AUANews, we reviewed the medical ethics literature and discussed advance directives (ADs). We also introduced the case of an elderly man with dementia who needs consideration for transurethral prostatectomy (TURP) because of urinary retention, representing a clinical case that a general urologist will see on a regular basis. In part 2, we discuss decisional capacity, surrogate decision making, best interest, substituted judgment and informed consent.

Does the Patient Have the Capacity to Make the Decision for Surgery?

Autonomous patients’ decisions are intentional, require adequate information, occur volitionally and are rational.¹ But what happens if a patient lacks the capacity to make a specific medical decision, such as consenting to surgery? Capacity is the ability to make a specific decision at hand. In the hospital setting, capacity can wax and wane based on age, baseline cognition, situational stress, metabolic derangements, medication influence and delirium. Capacity can exist in a fluid state. The amount of capacity required varies with the level of complexity and risk-benefit ratio of the decision at hand. The level of capacity has to increase with the complexity of the decision that needs to be made (a complexity-risk assessment).² Any physician can determine capacity; it is a clinical assessment, and not a legal designation.³ A physician should take into account the following factors to assess general capacity: 1) the patient’s awareness of the situation; 2) factual understanding of the issue; 3) appreciation of the consequences; 4) rational manipulation of information; 5) functionality in the environment; and 6) the extent of the demands.² If this patient does not have the capacity to give consent for a surgical procedure, then a health care representative is necessary. Capacity assessment can be facilitated by published tools, such as the Aid to Capacity Evaluation (ACE).⁴ The capacity assessment includes the patient’s ability to understand the medical problem, the proposed treatment, the alternatives and the option of refusing the proposed treatment. The patient must be able to foresee the consequences of accepting treatment and the consequences of refusing treatment. Capacity assessments should take into account significant mitigating psychological factors, such as severe depression, delusions and psychosis.

Competence, on the other hand, is a legal concept. A court of law is required to determine competence. A legally incompetent patient would require a legal surrogate or legal guardian designated by the courts.¹ A designated power of attorney for health care (HC-POA) is a legally named surrogate who has been chosen by the patient to make decisions when it is deemed that the patient no longer has the capacity to make the decisions for himself or herself. This designation is revocable and is applicable only during periods of incapacity. Individual states have health care representative forms where patients can designate their own representative without the need for an attorney’s involvement. If a patient has no designated health care representative, then a default surrogate decision maker is necessary. The default surrogate hierarchy varies in each state, but the individuals usually include the spouse, parent, adult child/ren and siblings. It would be appropriate to discuss the option of TURP with the power of attorney for health care or designated health care representative. If no surrogate decision makers are identified, the facility can continue to provide emergency care until the hospital can apply to the court for an appointed guardian.

Mr. Jones has a power of attorney for health care, which names his daughter as his health care representative. Mr. Jones does know he is at a physician visit and verbally expresses his dislike of the catheter. He knows the name of his daughter and the day of the week but does not know the date or the name of his facility. He is currently conversant and not agitated. He is able to make eye contact and answer simple questions. He is able to identify the “tube is needed to pee.” The nursing staff need to assist in emptying the catheter bag but he is able to dress himself and feed himself. He notes that his last surgery did not hurt too much, and he is not afraid of surgery again. He cannot remember how long his urination has been an issue other than “a long time.” His daughter states today “is a good day” for him. He does not have the capacity to consent to surgery when judged against the criteria outlined above. When a TURP is brought up, he is familiar with the “roto rooter” procedure. On discussion of the surgery with his daughter, he does reflect that he preferred his life before the catheter. Despite not being able to give consent, he is at least willing to assent to the procedure.

What Is in the Patient’s Best Interest?

Three hierarchical modes of decision making generally govern ethical decision making: autonomous decisions (as stated by patients or by ADs), substituted judgment (when a knowledgeable surrogate stands in for a patient) and the best interest standard, which bases decisions on what is thought to be the best thing for the patient under the current circumstances using principles of weighing the balance of risks and benefits.⁵ The principle of beneficence is a foundational moral imperative of doing right.⁶ A best interest standard is one that bases the decision for an intervention on what is thought to be the best thing for that patient.⁵ In order to assess what is right for this patient, an analysis of the risks and benefits of surgery vs a chronic catheter needs to be undertaken. Part of the process of consideration of the patient’s best interest includes attempting to maximize his ability to be part of the surgery discussion. For example one can discuss with involved family or surrogates whether in the past he has had any discussions with them stating his wishes and preferences about similar decisions when he did have the capacity. What does the daughter feel his hypothetical choice would be if presented with the current decision?⁷ What would this patient want if he could make the decision for himself? Exploring previous statements allows the use of a substituted judgment standard for decision making. Autonomous decisions and substituted judgment are preferred methods for decision making. The best interest standard is used as a type of “last resort” as studies have previously found that the hypothetical decisions of patients and surrogates around decisions correlate imperfectly, ie about two-thirds of the time.⁸

What Is Involved in an Informed Consent Process?

The informed consent process requires expression and reception and understanding of the risks, benefits and alternatives of an intervention. The patient or health care representative needs to comprehend and explain back in their own words what has been discussed with them. It is important to understand the facts presented, appreciate the possible consequences, manipulate the information provided and indicate choice.² According to the American Urological Association’s Code of Ethics, the “information provided must include known risks and benefits, costs, reasonable expectations and possible complications, available alternative treatments and their cost, as well as the identification of other medical personnel who will be participating directly in the care delivery. ” ⁹ The “impetus for the law of informed consent was the argument that doctors could not make decisions for patients because they did not know patients’ beliefs.”¹⁰ Our society has moved away from a paternalistic approach and has shifted decision making to align with patient autonomy.

The risks of a long-term catheter include urethral trauma, recurrent urinary tract infection, sepsis, catheter malfunction, need for repetitive changes, tripping over the catheter and glans erosion. The benefit of a long-term catheter is that there is no need for a surgical procedure. The patient has failed maximal medical therapy. Transurethral procedures include UroLift®, microwave therapy, laser prostatectomy and TURP (gold standard). The risks of TURP would include stress incontinence, bladder neck contracture, impact on sexual function, bleeding and need for transfusion, infection, urethral stricture and continued inability to void secondary to bladder decompensation. The anesthetic risks can include worsening of clinical dementia, and cardiac, pulmonary and thromboembolic events. Based on previously determined goals of care and what is in his best interest, the patient declares he does not want to live with the catheter and is willing to assent to the surgical procedure. His health care power of attorney is in agreement with his declarations based on previously expressed oral statements. These are consistent with his living will, suggesting that even in a persistent vegetative state, he would want life-sustaining treatments. His daughter consents on his behalf for the TURP without reservations.

Conclusion

In this case presentation and literature review, we analyzed the ethical framework that urologists need to explain the processes they are already undertaking on a daily basis. In this brief and common case, the topics of advance directives, decisional capacity, surrogate decision making, best interest, substituted judgment and informed consent can arise. There is a paucity of literature addressing ethics in the field of urology. This is a call to action for the field to realize that there are complicated ethical scenarios, some of which are unique to urology, that need to be presented and discussed as part of the larger ethical discourse.