I have a patient who lives in a group home and whose medical decisions are supposed to be made by a legal guardian, a woman who lives in another city and is difficult to reach. My patient, although legally incompetent, is quite easy to deal with, appropriate, and cooperative. She is intelligent and has some college education. The reason she was declared mentally incompetent and had her medical decisions deferred to a guardian is that she is considered to be limited in her ability to exercise reasonable judgment. For example, she inherited a large amount of money when her mother died, but she quickly lost her inheritance to scammers and relatives who requested large “loans” that were never repaid. As a result, she is now penniless. In another example, she was mauled on two separate occasions by the same dog, because she twice put herself in a dangerous position.
Despite her problems, I don’t think it is necessary to get in touch with a guardian every time I make a medical recommendation such as adjusting this patient’s medications. What exactly is the role of a guardian? Given the near-normal interactions I have with this patient, would I be doing her a disservice by not contacting her guardian concerning her most basic medical care? Is it the guardian’s job to ensure that she does what I recommend? My real concern lies in my legal duties and constraints vis-à-vis a patient with a guardian and, given the patient’s documented mental incompetence, knowing what steps I need to take to ensure that she understands and follows my medical advice.
This physician is trying to balance his duty to the patient and the legally appointed guardian and finds it difficult to know how to approach the patient. The physician is particularly puzzled because of his “near-normal” interactions with her. This commentary will discuss the legal role of a guardian, the primacy of the patient’s rights, and the position of a physician who must balance the two.
Let us consider these issues from several perspectives. First, every state has its own statutes regarding guardianship that should be consulted to understand local requirements. My comments are based on the Uniform Guardianship and Protective Proceedings Act of 1997,1 which strongly urge that guardianship be reserved for cases in which the court finds that the patient’s needs cannot be met by any less restrictive means. The standards in the act define “incapacity” as the inability “to receive and evaluate information or make or communicate decisions to such an extent that the individual lacks the ability to meet essential requirements for physical health, safety, or self-care, even with the appropriate technological assistance.”1
In a strict sense, any physician can render an opinion that a patient lacks capacity, but only a court can pass the legal judgment of incompetence and appoint a guardian. However, the guardianship should be tailored to fit the needs of the person so protected and “only remove those rights that the incapacitated person can no longer exercise or manage.”1
Secondly, the ethics literature considers clinical details of determining capacity. An often-quoted article by Applebaum and Grisso2 considers the patient’s ability to understand relevant information and communicate choices, to appreciate the situation and its consequences, and to manipulate information rationally as the cornerstones of a capacity determination. In the reality of clinical medicine, physicians are prone to make “sliding-scale” capacity decisions in which the depth and strictness of the evaluation is proportional to concerns about how harmful the outcome might be if the “wrong” decision is made.3
All of these and many other approaches4,5 require the complex responsibility of balancing the patient’s autonomy with protection from harm. The greater the risk, the stronger the evidence needed by the physician to assure that the patient has adequate capacity to undertake that risk. The law usually will see the potential loss of function or life as the greatest risk, although in medicine the quality of life and patient values are considered to be of equal importance.
In this case, stories are supplied suggesting that the patient had problems with money management (being gullible) and in not learning from negative experiences. Neither of these examples tells us how well she can “receive and evaluate” medical information or make relative medical decisions. In fact, one should never assume incapacity in one area of life based on a known incapacity in another area. For example, a person could be designated as lacking capacity to make financial decisions and needing someone specifically to be a fiscal guardian (e.g., someone with legally assigned conservatorship or power of attorney for financial decisions) without necessarily losing the right to make medical decisions. Nor should previously proven incapacity be assumed to continue to exist. Thus, each new decision is an opportunity to reassess a person’s capacity.
Although there are many instances in which incapacity can be expected to continue, this case scenario suggests that the patient should be given the chance to demonstrate her capacity, because the burden of proof is always on those who wish to remove a person’s rights. The patient may prefer to let her guardian make decisions for her, but even so, she should be asked about her preference.
Even if the patient does lack the capacity to make her own medical decisions, it is still required that the guardian’s decisions take into account the views and values of the patient. It is also suggested that the guardian maintain enough contact with the patient to know her “capabilities, limitations, needs and opportunities.”1 The guardian is also expected to “encourage the ward…to participate in decisions, to act on his or her own behalf, and to develop or regain capacity.”1 These efforts all work toward maintaining the autonomy of the ward to the maximum extent possible and ensuring that the decisions made for her are in line with what she would want. Therefore, organizing this patient’s care toward this end will best serve all concerned.
Assuming that this patient does lack capacity for making medical decisions, such decisions are to be made by the guardian. In this instance, the physician should approach the guardian just as he would a patient. Physicians are not expected to discuss every decision with patients in the course of their care, yet they are expected to inform patients adequately of the general course of treatment and advise them of any new problems or risks that would require reconsidering the course of care. The negotiation of mutual roles, goals, and expectations in the medical care process should answer any questions and clarify the approach to care. This process also provides patients or guardians with the appropriate level of control and reduces the need for micromanagement.
In this case, the physician should reassess the patient’s capacity for medical decision-making. If she appears to have that capacity and prefers to take control of her own care, she should petition the court that originally granted the guardianship to reverse it. In any event, the physician should engage her in decision-making as much as possible and ensure that her wishes are being respected unless there is reason to believe that she is acting in a manner that is inconsistent with choices she made in the past.
Of course, a patient’s values or capacity may change over time, and this, too, will require a reassessment by the physician. If the patient is not willing or able to follow a prescribed course of care, the physician should inform the guardian and then negotiate with both of them toward an acceptable alternative. This may mean that some care may not occur, just as in the case of a competent patient who refuses care knowing the potential outcomes of doing so.
The possibility of a person’s values changing over time, ensuring the adequacy of informed consent, and the role of surrogates are topics for further discussion.