Mrs. K

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Mrs. K, a chronically debilitated and bedbound 86-year-old woman, was admitted to the hospital with an acute change of mental status. At baseline, the patient was alert and oriented but required assistance with all activities of daily living except feeding herself.. The patient had declined surgery for both the aortic stenosis and the hip fracture.

The patient, widowed in the 1970s, has one adult child, John, and lives by herself.  For 18 months prior to this hospitalization Mrs. K had paid for an around-the-clock caregiver, but in recent months the caregiver's hours had been reduced to 6 hours a day (9AM to 3PM) because of financial limitations. During the evening and overnight, Mrs A was by herself. To pay for caregivers, the patient had taken a reverse mortgage on her home, sold most of her belongings, and used credit cards to their limits.

Her son, who is 57 years old, is her designated health care agent and the only family member involved in her care. He visits periodically to check on Mrs. K, but these visits and his ability to provide assistance are limited by frequent travel and work obligations (he is a semi driver).

About 8 months prior to admission, a meeting was convened to share concerns with the patient about her safety. Participants included a social worker from Adult Protective Services (APS), her son, her EHCP physician (also her primary care physician), and an occupational therapist. The APS social worker was involved in this case for 2 years and had tried, along with Mrs. K's son, to arrange for her to move into an assisted-living facility (to be financed through a Medicaid waiver), but Mrs. K declined. Occupational therapists had worked with the patient for more than a month to see if she could become more independent, hoping to improve the safety of her home situation, but she remained chiefly bedbound. The patient was told by the assembled multidisciplinary team of professionals that her current arrangement was unsafe and that it placed her at higher risk of developing various medical problems and eventually clinically deteriorating. According to her EHCP physician, the patient clearly understood what was at stake: her Mini-Mental State Examination score was 28 of a possible 30, and, more importantly, she had the capacity to understand the risks. The patient's response to being confronted by the professionals was telling them, “You'll have to drag me kicking and screaming out of the house if you want to put me into a nursing home.” The EHCP physician and her son confirmed that this position was consistent with the patient's previously and repeatedly expressed views on the topic.

In the emergency department, she presented wearing a hospital gown, was oriented only to person, and was considered delirious. She was unkempt, had extensive dental decay and a small stage 2 ulcer on her buttock, and was lying in stool and urine. She was given intravenous antibiotics and rehydration. By hospital day 2, she was markedly improved, her mental status was considered to be back to baseline, and discharge planning was initiated. The physical and occupational therapy team recommended a short-term, subacute rehabilitation placement.

Mrs. K is not interested in rehabilitation and wants to go directly home as soon as possible; going home and staying at home is her foremost priority. Given their insights on the patient's home situation, members of the health care team, including social workers, physical and occupational therapists, physicians, and nurses, are concerned about her safety if she were to go home in her current state. She was told that she would likely become sicker, develop worsening bedsores, and have poorer hygiene. She was told that her chances of quickly returning to the hospital or even of dying at home alone were high. In addition, she was informed that her ability to secure in-home caregiver services would end when her money ran out. Although these concerns were shared with the patient, she remains adamant about going home, stating that she is aware of the potential risks and that she is not going to go anywhere else. The medical team thought she had the capacity to make this decision but, given the gravity of the situation, consulted the psychiatry department for a second opinion. After two evaluations, the psychiatric consultant concluded that the patient is competent, but she noted:  “the patient may not fully realize the extent to which her health has deteriorated and her increased need for care. There is uncertainty about how thoroughly the patient has thought through the ramifications of going home. During the evaluation interview, the patient seemed either unwilling or unable to engage in a careful (and adequate) conversation about the risks associated with her proposed course of action.” The psychiatric consultant indicated that the patient's depression was adequately treated.

Mrs. K’s strongly expressed desire to go directly home and not to a rehab facility appears consistent with her long-standing expressed wishes.  Communication with her son revealed that Mrs. K’s attitude toward “nursing homes” stemmed from a time in her life when she volunteered with a seniors’ facility. In doing this, she visited several nursing homes and developed an unfavorable view of them, insisting she never wanted to go to one. Accordingly, her son explained, past efforts to have her consider assisted-living options were always unsuccessful.

*http://www.hopkinsbayview.org/medicine/residency/files/grandrounds/Carrese_RefusalOfCare.pdf