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Initially reluctant to remove her blouse for thephysical examination, Ms. Rosario allows Ms. Al-varez to wrap a towel around her to lessen her expo-sure. On examination a large, hard mass on her leftbreast is noted. Ms. Rosario says she thinks she mighthave cancer. Her heartbeat is irregular; atrial fibrilla-tion is suspected. The team agrees that Ms. Rosario’s

condition warrants further evaluation (and possiblehospital admission), including an in-depth assessmentof her cognitive and functional status and examina-tion by oncology and cardiology specialists. Dr.Bayliss tells her, “I’d like you to see these specialistsbecause there might be treatments that can make youmore comfortable.” But Ms. Rosario refuses: “It’s afree country, and I can care for myself.”

ETHICAL PRINCIPLES AND REAL LIFEHealth care professionals are responsible for fulfillingthe goals of health care services—to promote well-being, cure illness, and ease suffering. Certain ethicalprinciples can guide their efforts. But which principleshould take precedence when a patient is intent on acourse that clinicians believe will either fail to help oreven endanger her?

The principles. Paramount is the ethical principleof beneficence: the professional obligation to providea benefit to the patient. But it’s not always clear whichof several potential benefits should prevail. Forexample, in this case, should Ms. Rosario’s physicalsafety outweigh her desire for independence? Anyone

Since her husband’s death eight months ago,Mary Rosario, an 80-year-old AfricanAmerican woman, has lived alone in theirapartment. (This case is a composite basedon our experiences.) Her landlady and Janet

Hale, a deceased friend’s daughter, are concernedabout her declining health. Because Ms. Rosariohas no known family, they contact Adult ProtectiveServices, which asks the geriatrics department of thelocal medical center to perform a medical evalua-tion. When Paula Bayliss, MD, and Ruby Alvarez,RN, arrive, they’re met downstairs by the landladyand Ms. Hale, who explain their concerns: “SinceEd passed, Mary’s lost a lot of weight. She forgetsthings and falls a lot. She doesn’t keep herself cleanlike she used to.” They report that she’s refusedoffers to take her for medical care. Ms. Hale adds,“She tells me, ‘You have enough to do with yourown family—I don’t want to be a burden.’”

Ms. Rosario permits Dr. Bayliss and Ms. Alvarezto enter her apartment, where they note signs ofpersonal and environmental neglect that appear tobe fairly recent; for example, although seasonalclothing is neatly stored, the apartment smells ofurine and rotting food and Ms. Rosario is disheveledand wearing stained clothing. She moves unsteadily,holding onto furniture as she returns to her chair.

Ms. Rosario agrees to answer some assessmentquestions and allows a limited physical examination.Although her answers are appropriate, she frequentlyrepeats herself, and becomes teary when her husbandis mentioned. She reports feeling “very unhappy” andsays she hasn’t felt like grooming or cleaning theapartment since he died. Mealtimes are irregular.Asked about her physical condition, she states thatshe has “a sore area on my chest” and is “alwaystired and sometimes dizzy.” She hasn’t seen a physi-cian in many years. She reports “having the aches” inher left hip and knee. Asked why she hasn’t soughtmedical care, she explains, “I’m afraid they’ll put mein the hospital—I don’t trust hospitals.” When Ms.Alvarez suggests home care, Ms. Rosario replies, “Idon’t want strangers in my home. I can manage.”

When a Patient Refuses AssistanceThe patient says, ‘I don’t trust hospitals and I don’t wantstrangers in my home!’—how should clinicians respond?

Should physical safety outweigh a desire for independence?

By Pamela J. Grace, PhD, RN, ANP, and Eric J. Hardt, MD

cence). In order to formulate and carry out a plan ofcare, clinicians need clinical knowledge, experience,communication skills, compassion, and a willingnessto revise whatever isn’t working.

DISCUSSIONThe capacity to make health care decisions is oftenevaluated on a situational basis according to criteriathat are well described in the ethics literature. At aminimum, 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 “rela-tively free from detrimental influences such as psy-chological disturbances (for example, delusionalstates), physical impairments (for example, decreasedlevel of consciousness), and environmental factors(for example, coercive actions of health careproviders or family members).”

If a patient clearly has decision-making capacitybut declines treatment that clinicians believe wouldbe beneficial, clinicians still must fulfill the goals ofhealth care—promote well-being, cure illness, andease suffering—in ways the patient finds accept-able. If it’s determined that the patient doesn’t havedecision-making capacity, any actions taken shouldstill be consistent with the patient’s wishes, unlesssignificant harm would result.

The patient’s ability to make decisions should bereevaluated periodically. Sometimes a person isdeemed generally (rather than situationally) incapableof decision making. In such cases, ideally, the personwill have an advance directive in place granting some-one else durable power of attorney. If no advance

who has decision-making capacity (the ability tomake voluntary, informed choices) is considered tohave the moral and legal right to either accept orrefuse treatment and other services.1 A patient’s rightto make her or his own choices exists even when ex-perts disagree with the choices the person is making.Conflict can arise because clinicians also have aresponsibility to avoid causing harm, as expressed bythe ethical principle of nonmaleficence.

Real-life problems are complex and cannot easilybe solved by applying abstract principles, as bioethi-cist Carl Elliott has noted.2 The clinician must askwhat course will most benefit the patient, taking intoaccount such factors as the patient’s desires, beliefs,goals, and life experiences. The course chosen willthen more likely be beneficial and acceptable to thepatient. Principles may be used to gain clarity about asituation, but their limitations should be understood.For example, the principle of autonomy shouldn’t beused to rationalize a “hands-off” approach whenmore information and better communication mightresult in a plan of care that is acceptable to all.

Autonomy and decision making. It’s generallyaccepted that because humans have the ability to rea-son—to think through a proposed course of actionand anticipate both its results and their impact—theyhave the right to self-determination. But there aremany reasons someone might lack decision-makingcapacity. And we’re all susceptible to subtle (and notso subtle) psychological influences, making auton-omy a “more or less” proposition rather than anabsolute.

For any given situation, three scenarios regard-ing a patient’s decision-making capacity exist:• The patient clearly has decision-making capacity

according to well-established criteria (describedbelow), and the patient’s decision either coincideswith the clinician’s judgment about the patient’sbest 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 withthe clinician’s judgment about the patient’s bestinterest.

• The patient clearly does not have decision-makingcapacity, and the patient’s representative is chargedwith decision making on the patient’s behalf.Ms. Rosario’s case exemplifies the second sce-

nario. It illustrates the conflict clinicians face intrying to balance respect for a patient’s right to self-determination (autonomy) with the need to protectthe patient from harm (beneficence and nonmalefi-

Conflict can arise because clinicians also have a responsibility to

avoid causing harm.

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directive exists, a substitute decision maker must befound—either a family member or friend who will actin this capacity or a court-appointed legal guardian.

In Ms. Rosario’s case, not enough is known abouther reluctance to accept help. Although Ms. Alvarezisn’t sure yet whether Ms. Rosario has the ability tomake an informed decision, she knows that interven-tions could lessen her suffering and make her morecomfortable. Ms. Alvarez began to establish rapportsimply by addressing Ms. Rosario’s discomfort aboutundressing. She believes further evaluation may bepossible without resorting to actions such as a civilcommitment procedure, which would remove thepatient’s autonomy and probably undermine her trust.

MS. ROSARIO’S CASE: A BASIS FOR ACTIONSWhat options are open to Dr. Bayliss and Ms. Al-varez? They agree that forcing hospitalization wouldbe frightening and disorienting for Ms. Rosario andshould be a last resort. But her isolated living situa-tion 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 prob-lem is urgent. If Ms. Rosario clearly lacked decision-making capacity and was in imminent danger, apsychiatric referral would be warranted. But despiteher reluctance to accept help, she converses eagerlyand makes sense when she talks. She does admit tofalling twice recently when she “got out of bed toofast.” Dr. Bayliss decides that while she isn’t inimminent danger, falling is a concern.

When Dr. Bayliss receives an urgent page andmust leave, Ms. Alvarez stays, sensing that thepatient has begun to trust her. Ms. Alvarez knowsshe needs to learn more about Ms. Rosario’s beliefsregarding health care and what she values in life. Sheuses the patient’s earlier comments as starting points:“You said you’ve been very unhappy since your hus-band died. Can you tell me more about how you’vebeen feeling?” and “What are your concerns aboutseeing a specialist?” Ms. Rosario gradually opens up.

When Ms. Alvarez says she’s concerned about hersafety while living alone, Ms. Rosario replies, “I’mnot worried about dying; I’ve lived long enough.”Ms. Alvarez makes a mental note to assess forbereavement and depression later; the immediate pri-ority is the risk of falling. She explains that a fallcould result in immobility and pain and suggestsways to lessen the risk. She demonstrates how to getout of bed safely and asks if she can return that after-noon with a walker: “I’ll show you how to use it; itwill give you more stability. We can also talk aboutgetting you a medical alert system, which would letyou call for help in an emergency.”

When Dr. Bayliss and Ms. Alvarez meet later thatafternoon, they agree it’s vital to gain Ms. Rosario’strust. They need to better understand her goals forcare and determine whether she fully comprehendsthe consequences of refusing treatment. Breast can-cer and atrial fibrillation seem probable diagnoses; ifso, her care needs will increase. The team decidesthat Ms. Alvarez will visit regularly, addressingimmediate needs such as fall prevention and goodnutrition and hygiene; she’ll also broach the subjectof finding someone to help with household tasks. Assoon as possible, they’d like Ms. Rosario to see car-diac and oncology specialists. Eventually they’llneed to address end-of-life care, so they will askabout her spiritual views and any religious affilia-tions, as these can provide support. If Ms. Rosariobecomes incapable of decision making and self-care,she’ll need a guardian. The clinicians decide to askMs. Hale to talk with her about whom she’d like toappoint should this become necessary. t

Pamela J. Grace is an associate professor of adult health andethics at the Boston College William F. Connell School ofNursing in Chestnut Hill, MA, and a member of the BeaconHospice Ethics Committee, based in Charlestown, MA. EricJ. Hardt is clinical director of the Geriatrics Section atBoston Medical Center, an associate professor of medicine at Boston University School of Medicine, and a medicaldirector at Beacon Hospice. The authors acknowledge theBeacon Hospice Ethics Committee for help in addressing theissues associated with the composite case. Ethical Issues iscoordinated by Grace (gracepa@bc.edu) and Douglas P.Olsen, PhD, RN (douglas.olsen@yale.edu).

REFERENCES1. Federal Patient Self-Determination Act. Final regulations. Part

489—provider agreements and supplier approval. Subpart I:advance directives. 1991;42 CFR 489.100-104. http://ecfr.gpoaccess.gov/cgi/t/text/text-idx?c=ecfr;rgn=div6;view=text;node=42%3A4.0.1.5.27.8;idno=42;sid=fb10d2af2a3d97feb72a5807af80ca13;cc=ecfr.

2. Elliott C. Where ethics comes from and what to do about it.Hastings Cent Rep 1992;22(4):28-35.

The patient’s ability to make decisionsshould be reevaluated periodically.