Since her husband's death eight months ago, Mary Rosario, an 80-year-old African American woman, has lived alone in their apartment. (This case is a composite based on our experiences.) Her landlady and Janet Hale, a deceased friend's daughter, are concerned about her declining health. Because Ms. Rosario has no known family, they contact Adult Protective Services, which asks the geriatrics department of the local medical center to perform a medical evaluation. When Paula Bayliss, MD, and Ruby Alvarez, RN, arrive, they're met downstairs by the landlady and Ms. Hale, who explain their concerns: "Since Ed passed, Mary's lost a lot of weight. She forgets things and falls a lot. She doesn't keep herself clean like she used to." They report that she's refused offers to take her for medical care. Ms. Hale adds, "She tells me, 'You have enough to do with your own family-I don't want to be a burden.'"
Ms. Rosario permits Dr. Bayliss and Ms. Alvarez to enter her apartment, where they note signs of personal and environmental neglect that appear to be fairly recent; for example, although seasonal clothing is neatly stored, the apartment smells of urine and rotting food and Ms. Rosario is disheveled and wearing stained clothing. She moves unsteadily, holding onto furniture as she returns to her chair.
Ms. Rosario agrees to answer some assessment questions and allows a limited physical examination. Although her answers are appropriate, she frequently repeats herself, and becomes teary when her husband is mentioned. She reports feeling "very unhappy" and says she hasn't felt like grooming or cleaning the apartment since he died. Mealtimes are irregular. Asked about her physical condition, she states that she has "a sore area on my chest" and is "always tired and sometimes dizzy." She hasn't seen a physician in many years. She reports "having the aches" in her left hip and knee. Asked why she hasn't sought medical care, she explains, "I'm afraid they'll put me in the hospital-I don't trust hospitals." When Ms. Alvarez suggests home care, Ms. Rosario replies, "I don't want strangers in my home. I can manage."
Initially reluctant to remove her blouse for the physical examination, Ms. Rosario allows Ms. Alvarez to wrap a towel around her to lessen her exposure. On examination a large, hard mass on her left breast is noted. Ms. Rosario says she thinks she might have cancer. Her heartbeat is irregular; atrial fibrillation is suspected. The team agrees that Ms. Rosario's condition warrants further evaluation (and possible hospital admission), including an in-depth assessment of her cognitive and functional status and examination by oncology and cardiology specialists. Dr. Bayliss tells her, "I'd like you to see these specialists because there might be treatments that can make you more comfortable." But Ms. Rosario refuses: "It's a free country, and I can care for myself."
ETHICAL PRINCIPLES AND REAL LIFE
Health care professionals are responsible for fulfilling the goals of health care services-to promote well-being, cure illness, and ease suffering. Certain ethical principles can guide their efforts. But which principle should take precedence when a patient is intent on a course that clinicians believe will either fail to help or even endanger her?
The principles. Paramount is the ethical principle of beneficence: the professional obligation to provide a benefit to the patient. But it's not always clear which of several potential benefits should prevail. For example, in this case, should Ms. Rosario's physical safety outweigh her desire for independence? Anyone who has decision-making capacity (the ability to make voluntary, informed choices) is considered to have the moral and legal right to either accept or refuse treatment and other services.1 A patient's right to make her or his own choices exists even when experts disagree with the choices the person is making. Conflict can arise because clinicians also have a responsibility to avoid causing harm, as expressed by the ethical principle of nonmaleficence.
Real-life problems are complex and cannot easily be solved by applying abstract principles, as bioethicist Carl Elliott has noted.2 The clinician must ask what course will most benefit the patient, taking into account such factors as the patient's desires, beliefs, goals, and life experiences. The course chosen will then more likely be beneficial and acceptable to the patient. Principles may be used to gain clarity about a situation, but their limitations should be understood. For example, the principle of autonomy shouldn't be used to rationalize a "hands-off" approach when more information and better communication might result in a plan of care that is acceptable to all.
Autonomy and decision making. It's generally accepted that because humans have the ability to reason-to think through a proposed course of action and anticipate both its results and their impact-they have the right to self-determination. But there are many reasons someone might lack decision-making capacity. And we're all susceptible to subtle (and not so subtle) psychological influences, making autonomy a "more or less" proposition rather than an absolute.
For any given situation, three scenarios regarding a patient's decision-making capacity exist:
* The patient clearly has decision-making capacity according to well-established criteria (described below), and the patient's decision either coincides with the clinician's judgment about the patient's best interest or is unlikely to cause harm.
* It's unclear whether the patient has decision-making capacity concerning the choice at hand, and the patient's decision doesn't coincide with the clinician's judgment about the patient's best interest.
* The patient clearly does not have decision-making capacity, and the patient's representative is charged with decision making on the patient's behalf.
Ms. Rosario's case exemplifies the second scenario. It illustrates the conflict clinicians face in trying to balance respect for a patient's right to self-determination (autonomy) with the need to protect the patient from harm (beneficence and nonmaleficence). In order to formulate and carry out a plan of care, clinicians need clinical knowledge, experience, communication skills, compassion, and a willingness to revise whatever isn't working.
DISCUSSION
The capacity to make health care decisions is often evaluated on a situational basis according to criteria that are well described in the ethics literature. At a minimum, one must be able to do all of the following:
* comprehend information related to a proposed course of action.
* deliberate about the potential course of action (or inaction).
* describe how the proposed action (or inaction) fits with her or his goals.
And as one of us (PJG) stated in this column in November 2004, the person should also be "relatively free from detrimental influences such as psychological disturbances (for example, delusional states), physical impairments (for example, decreased level of consciousness), and environmental factors (for example, coercive actions of health care providers or family members)."
If a patient clearly has decision-making capacity but declines treatment that clinicians believe would be beneficial, clinicians still must fulfill the goals of health care-promote well-being, cure illness, and ease suffering-in ways the patient finds acceptable. If it's determined that the patient doesn't have decision-making capacity, any actions taken should still be consistent with the patient's wishes, unless significant harm would result.
The patient's ability to make decisions should be reevaluated periodically. Sometimes a person is deemed generally (rather than situationally) incapable of decision making. In such cases, ideally, the person will have an advance directive in place granting someone else durable power of attorney. If no advance directive exists, a substitute decision maker must be found-either a family member or friend who will act in this capacity or a court-appointed legal guardian.
In Ms. Rosario's case, not enough is known about her reluctance to accept help. Although Ms. Alvarez isn't sure yet whether Ms. Rosario has the ability to make an informed decision, she knows that interventions could lessen her suffering and make her more comfortable. Ms. Alvarez began to establish rapport simply by addressing Ms. Rosario's discomfort about undressing. She believes further evaluation may be possible without resorting to actions such as a civil commitment procedure, which would remove the patient's autonomy and probably undermine her trust.
MS. ROSARIO'S CASE: A BASIS FOR ACTIONS
What options are open to Dr. Bayliss and Ms. Alvarez? They agree that forcing hospitalization would be frightening and disorienting for Ms. Rosario and should be a last resort. But her isolated living situation poses some risk: if she falls and injures herself, she would be unable to contact anyone for help. Neither choice seems best. How should they proceed?
First, they need to determine whether the problem is urgent. If Ms. Rosario clearly lacked decision-making capacity and was in imminent danger, a psychiatric referral would be warranted. But despite her reluctance to accept help, she converses eagerly and makes sense when she talks. She does admit to falling twice recently when she "got out of bed too fast." Dr. Bayliss decides that while she isn't in imminent danger, falling is a concern.
When Dr. Bayliss receives an urgent page and must leave, Ms. Alvarez stays, sensing that the patient has begun to trust her. Ms. Alvarez knows she needs to learn more about Ms. Rosario's beliefs regarding health care and what she values in life. She uses the patient's earlier comments as starting points: "You said you've been very unhappy since your husband died. Can you tell me more about how you've been feeling?" and "What are your concerns about seeing a specialist?" Ms. Rosario gradually opens up. When Ms. Alvarez says she's concerned about her safety while living alone, Ms. Rosario replies, "I'm not worried about dying; I've lived long enough." Ms. Alvarez makes a mental note to assess for bereavement and depression later; the immediate priority is the risk of falling. She explains that a fall could result in immobility and pain and suggests ways to lessen the risk. She demonstrates how to get out of bed safely and asks if she can return that afternoon with a walker: "I'll show you how to use it; it will give you more stability. We can also talk about getting you a medical alert system, which would let you call for help in an emergency."
When Dr. Bayliss and Ms. Alvarez meet later that afternoon, they agree it's vital to gain Ms. Rosario's trust. They need to better understand her goals for care and determine whether she fully comprehends the consequences of refusing treatment. Breast cancer and atrial fibrillation seem probable diagnoses; if so, her care needs will increase. The team decides that Ms. Alvarez will visit regularly, addressing immediate needs such as fall prevention and good nutrition and hygiene; she'll also broach the subject of finding someone to help with household tasks. As soon as possible, they'd like Ms. Rosario to see cardiac and oncology specialists. Eventually they'll need to address end-of-life care, so they will ask about her spiritual views and any religious affiliations, as these can provide support. If Ms. Rosario becomes incapable of decision making and self-care, she'll need a guardian. The clinicians decide to ask Ms. Hale to talk with her about whom she'd like to appoint should this become necessary.
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