Mr. Roberts

Mr. Roberts was admitted to the University Medical Center with heart failure. He was well known to the staff, having had quadruple bypass surgery 10 years prior when he was 55. He had been a frequent visitor to the cardiology and surgery service with various heart complications since then. After a long night of tests and consultations, the cardiology team diagnosed Mr. Roberts with end-stage heart failure. Due to his past medical history, he was deemed to be ineligible for a heart transplant. Visibly distressed by the news, Mr. Roberts, his hands tightly clasping his wife's, asked the attending physician about his prognosis. In his current condition, he was told, he probably had a month to live. "Come on doc, there must be something you can do." The attending physician told Mr. Roberts he would consult with his colleague, Dr. Jones, to see whether there were any treatment alternatives.

Dr. Jones, an eminent cardiac surgeon at the medical center, had been preoccupied with transplants and machines since his medical school days. Although he had performed numerous heart surgeries in his 25 years of practice, the goal of creating a cardiac device that would eliminate the problems of rejection or failure had long been in his dreams. For the past 20 years, he had been developing an artificial heart in collaboration with its manufacturer, Hipprotech. In the past year the FDA approved the device for a clinical trial with humans, and 10 months ago they implanted one in a patient to much fanfare.

Although the implant occurred without incident, the patient sustained several embolic strokes and died after two months. The autopsy had shown a thrombus within the artificial heart, a problem thought to have been resolved in developing the device. After deliberating, Dr. Jones's group had decided to press ahead with the trial and to collect more data from the next eligible patient to determine whether the clotting problem was device-based or due to the patient, as well as to gather more data about the implant.

They could not decide, however, whether to disclose the clotting problem to the next patient. It was not part of the informed consent protocol, but some of Dr. Jones's colleagues argued that the problem might be in the device. They adjourned the meeting without a consensus. At that point, the cardiology service paged Dr. Jones with the news of a new candidate for the trial. Driving in to the hospital, he was excited about continuing his research. On arrival, he found that the patient's file was already on his desk. Eager to familiarize himself with the profile before talking to the patient and family about joining the trial, he immediately flipped open the folder. To his surprise, the patient was one that he had operated on several times in the past decade: Mr. Roberts.

Mr. Silver

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Mr. Silver is a 39-year-old man with prostate cancer.  Although the disease is confined to his prostate, Dr. Binder knows that, in a patient this young, the cancer is virulent and should be treated aggressively.  For this reason, he strongly recommends that MR. Silver undergo a radical prostatectomy. Mr. Silver has heard about the potential side effects of the surgery including impotence and incontinence, and he insists that he prefers radiation.

            Dr. Bender has explained that the chances of a long-term cure are 30-40 percent better with the prostatectomy and that any resulting problems can be surgically corrected later.  Mr. Silver is adamant, however, saying “Unless you can tell me that the odds are overwhelming that I will not be impotent or incontinent, I’ll take my chances with radiation.”  His wife has told Dr. Binder privately, “I don’t care about the side effects and he’ll get used to whatever happens.  I just want him alive.  We could have many good years ahead of us if he has the surgery.  I’m confused about his decision; it seems so unlike him to take this kind of risk. I’m not sure he totally understands the repercussions of what he is saying.”  Dr. Bender is very uncomfortable with proceeding with radiation.  Dr. Bender wants to respect his patient’s autonomy, but wonders if Mr. Silver is being irrational.

*Post, Blustein, Dubler. (2007). Handbook for Health Care Ethics Committees. Baltimore: Johns Hopkins University Press. 

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