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Letting her go.

Mrs. R, an eighty-one-year-old woman with a five-year history of multi-infarct dementia, was admitted to the nursing home after being hospitalized for a stroke. On admission, Mrs. R was responsive at times but unable to communicate in any meaningful fashion. She was incontinent and needed maximal assistance with activites of daily living, but was somewhat resistant to care. Although she was ambulatory when she first entered the home, she was unable to participate in a formal rehabilitation program. Two months later she developed pneumonia and, after an extended period of bed rest, was unable to walk.

Within six months Mrs. R again developed pneumonia, along with congestive heart failure, and was treated with antibiotics. Because she had stopped eating, a nasogastric tube was considered. Her husband, a member of the home's geriatric outreach program, wrote a letter with the assistance of his social worker. In the letter, which was forwarded to the ethics consult team, Mr. R asked that his wife not have a feeding tube inserted, stating that he knew she would not want to be fed in this manner. The primary care team responsible for Mrs. R's care was informed of Mr. R's request soon after his letter was received. Though the staff had somewhat mixed feelings at the time, they felt professionally obligated to honor the request. Their greatest concern centered on whether Mr. R could speak for his wife since there were no advance directives in place. Another concern was the issue of not providing food. However, at this time the question of the feeding tube was secondary, since Mrs. R was able to be fed with a syring and was taking sufficient amounts of a nutritional supplement.

Since there were no advance directives in place, and there was doubt about how closely Mr. R's statement actually reflected his wife's wishes, corroborating statements were obtained from Mrs. R's brother and two of her friends. The ethics consult team felt these statements were sufficient to substantiate Mrs. R's wishes, and that a feeding tube should not be inserted when Mrs. R became unable to take nourishment by spoon or syringe feeding. This was communicated to the members of the primary care team, who did not voice objections at this time.

About six weeks after Mr. R's initial request, Mrs. R stopped eating, and no feeding tube was inserted. After Mrs. R had taken nothing by mouth for five days, it became apparent that several members of the primary care team were uncomfortable with this decision, and the ethics consult team was called in.

Members of the three disciplines with the greatest involvement in the case--nursing, social work, and medicine--all expressed concerns regarding the decision to withhold treatment. Nursing staff seemed to have a particularly difficult time with the idea that they were just "letting Mrs. R go." Many felt that by allowing a resident to die they were not doing their jobs. At the same time, Mr. R's visits and calls to inquire about his wife's condition decreased in frequency. The nursing staff perceived this not only as an abandonment of Mrs. R, but also of them.

Of the two social workers intimately involved in this case the first, Mr. R's social worker, focused on his well-being. She was particularly concerned about his failing health and the deleterious effect his wife's condition was having on him. The other social worker was assigned to Mrs. R's primary care team. When Mrs. R stopped eating and no feeding tube was inserted, this worker worried about the impact this was having on the primary care team, especially the nursing and medical staff. She expressed the opinion that the staff had become family to Mrs. R, and watching her die was very difficult for them. Of particular concern was the staff perception that a decision had been made by administrative staff, and that the unit team was not given enough time or opportunity to participate in review and discussion before the consult team had reached its own conclusions.

Mrs. R's primary care physician was involved in the process from the beginning, meeting with the consult team and Mr. R after his initial request not to insert a feeding tube, and also participating in the first unit team meeting. From the outset, he expressed a very strong opinion that Mr. R wanted to "strave his wife to death," and was clearly very uncomfortable with the request. He seemed to feel that Mr. R was not speaking for his wife, but rather for himself. The psychiatrist on the team was distressed that he had not been included in the earlier stages of decisionmaking (he had been absent from the first unit team meeting). In addition, he had a long-standing relationship with Mr. R as his psychiatrist in the geriatric outreach program. He felt that Mr. R's lengthy history of depression precluded his ability accurately to articulate his wife's wishes. In addition, this physician also expressed doubts concerning the validity of the corroborating documents.

How would you address the concerns expressed by nursing, social work, and medicine? What can be done when the views of primary care providers differ from those of the patient's family and of the staff distant from the case?

Nursing homes have long struggled with the image of being the place of last resort for frail older individuals. Staff education, especially for nurses and nursing aides, has stressed the supportive and restorative aspects of resident care, not only in efforts to enhance quality of life for nursing home residents, but also to maintain the morale of staff who often work with physically and mentally impaired residents no longer capable of showing much appreciation for their efforts. Despite popular opinion, nursing homes tend to avoid the issue of death and dying, viewing death as a negative outcome and a sign of failure, not the inevitable and expected end of life in a usually very old individual. The concerns expressed by the staff in this case are legitimate and will likely be recurrent. Could the ethics consult team have done something different to assist the decisionmaking process and minimize the problems that arose? I believe so, fully recognizing that hindsight is 20-20.

First of all, if the initial decision to respect Mr. R's request on behalf of his wife not to start tube feeding had been more of a joint effort--giving everyone the opportunity to weigh the evidence and voice their concerns and opinions before a final decision was made--many of the problems raised by the staff could probably have been anticipated and averted. Participating in the decisionmaking process would also have given the primary care team a better understanding of how a decision is reached and more of a sense of ownership for the decision, rather than viewing it as an unpleasant directive, as it appears to have been in this situation. Nevertheless, including the primary health care team in the decisionmaking may not have been enough to allay their concerns, which in this case seem to focus on what the nursing staff perceived its professional obligations to be. Again, nurses and nursing assistants have only recently been asked to change their role in the nursing home setting to include caring for residents from whom treatments have been withheld or withdrawn. Many physicians find themselves in a similar situation, when they can no longer decide alone always to provide maximal care. Most nursing homes have provided little education in ethics to staff, who must be made aware of the facility's legal and moral obligation to respect the wishes of residents, despite any personal disagreement they may have with those wishes.

Recognizing patients' wishes as determinative does not mean, however, that staff concerns should not also be addressed. The social workers remind us that we cannot make such determinations in a void. Even if it appears that not tube feeding Mrs. R is the right outcome for her, the impact of such a decision on others must be considered, if only to help prepare them for its implementation. They must get all the support they need in terms of counseling and comfort care issues. Those whose personal feelings still make it too difficult for them to care for a resident from whom treatment is being withheld could then be given the option of withdrawing from the case. In this case, I would also consider temporizing measures such as intravenous fluid for a few days, to allow staff time to work through their conflicts before they feel they have participated in a death. Allowing the staff some time to air their concerns rather than immediately offering them the option to withdraw not only acknowledges the importance of their feelings but is more likely to lead to staff growth.

The concerns of the social workers also caution us, however, to remain focused on Mrs. R, and to work with the staff and family and friends to do the same. In addition to staff feelings, Mr. R's failing health could easily have influenced a decision in either direction that was not necessarily justified. The psychiatrist expressed concerns over his ability to function as a credible spokesperson for his wife. His frailty seemed to make the social worker want his wife's suffering to end for his sake. And it might have been responsible for Mr. R's decreased visits to his wife, which the nursing staff interpreted as abandonment. These are issues that must be known and considered by the ethics team, but that may be irrelevant to the final decision.

This sense of abandonment felt by the nursing home staff is not uncommon to long-term care. Staff often perceive residents to be abandoned by families, and in many instances they consider themselves surrogate family. This relationship clearly makes it more difficult for staff to understand requests from these same families to limit treatment, even when there is little reason to question the documentation. In most instances, with their good care, staff do not perceive the resident to be suffering, something so often alluded to in discussion with families. There remains a real dilemma in the minds and hearts of many caregivers in nursing homes as to whether the biological or nursing home "family" can best represent the interests of the nursing home resident.

It is the greatest challenge of any group involved in ethical deliberation to tease apart these aspects and enable all involved to make the best possible decision for the person in question. Education and discussion of these issues by staff before they are confronted by actual situations is helpful, providing opportunity to address staff concerns ahead of times of crisis. It also enables institutions to develop policies and guidelines that they know their staff at least understand, if not support, and can implement when appropriate.
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Title Annotation:Case Study; includes commentaries; caring for terminal patients
Author:Olson, Ellen; Bowles, Alvin L., Sr.
Publication:The Hastings Center Report
Date:Nov 1, 1992
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