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any Americans witnessed the emotional drama outside of the Florida hospice facility where Terri Schiavo was a patient. The media covered it constantly. I kept thinking, “What if this were one of my facilities”? Then I remembered a case a few years back. The daughter of a resident in a retirement community wished to discontinue tube feeding. The resident had suffered multiple strokes, and the family had given up hope of her possible recovery. Hospice services were instituted and the feedings stopped. None of us had any premonition of a problem brewing, and we were blindsided by what happened next. A private-duty sitter (who had cared for the resident for several years) became emotionally distraught when the feeding tube was removed. She quickly had every resident and most of the staff in the facility in an uproar. The daughter, who was the healthcare power of attorney and already struggling with her mother’s impending death, was now called a “murderer.”
       I watched the television and the local paper, believing that this would be a big news story for sure. The facility staff did not know what to do. They had never discussed this possible, but now all-too-real, scenario. As professionals in long-term care, none of us wants to have this scenario play out in our facility. What was my responsibility as a member of the healthcare team? The daughter had done nothing legally or morally wrong. It was imperative for me to understand the issue thoroughly and be prepared to discuss the risks and benefits of feeding cessation without becoming emotionally involved. It was also my job to support the daughter as her mother’s surrogate decision maker.

The Evolution of End-of-Life Care

       In the past, death occurred quickly, generally as the result of an accident or sudden illness. Treatments that are available today did not exist 20 years ago. Once the placement of feeding tubes became a relatively easy procedure, their use escalated. As families encountered illnesses, such as stroke or dementia, tubes were maintained for years until the resident died of some other cause. Today, we have advanced technology that extends life, sometimes at the expense of quality. If both quality and quantity are not possible, which is preferred? That depends on the individual.
       As a nation, we have begun a dialogue about what type of life we want extended and what constitutes quality of life. Many hospice and palliative care professionals feel that this was Terri Schiavo’s “gift.”¹ Following the Schiavo case, I noticed a sudden openness to address end-of-life issues. Several local attorneys commented that the demand for legal services to execute advance care documents had skyrocketed. This trend has extended into retirement homes, as notices of town meetings, discussion groups, and lectures suddenly were posted in areas where residents gather for social events and meals.
       The decision to place or remove a feeding tube is the toughest decision most families are confronted with. Even when faced with the end of a terminal illness, family members struggle when their loved one suddenly refuses to eat or drink. Most of the residents that we have under our care will reach the “end point” of their disease, whether they suffer with cancer, have had a stroke, or are living with a progressive neurological illness. Cessation of eating is a common denominator of all terminal illnesses. Are we in dereliction of our duties when we fail to intervene? How do we honor the resident’s right to self-determination when we are conflicted internally? If the resident begins hospice and palliative care services, what does that mean with regard to nutritional care? Does that mean we walk away and provide little to no care?
       Knowing that food and fluid may exacerbate symptoms of nausea, vomiting,

Table 1

and fluid overload in terminally ill patients (see Table 1) has allowed many professionals to view lack of intake as the compassionate use of nutrition and hydration. It may help to remind staff or family members that when the body is shutting down, circulation diminishes and vital nutrients are not distributed to the organs. Organ systems cannot handle the overload, increasing the risk of fluid collecting in the lungs and chest. Further comfort may be obtained from knowledge that the lack of fluid and nutrients will decrease the feelings of hunger, thirst, pain, and suffering in general.²
       When the disease is a progressive neurological disease, such as dementia or amyotrophic lateral sclerosis (ALS), knowing there is a 15–25% incidence of death with surgical placement of a feeding tube, that there is a 60% likelihood of death within a year, and that 50% of tube-fed residents have continued aspiration pneumonia provides me with information that I can share with family members who do not want to place a feeding tube.³
       Medical personnel are forced to consider their own ethical beliefs as they assist families with the decision-making process. The job of educating family members about risks and benefits is complicated further by the personal beliefs and ethics of each person involved in the case. Once, I heard a nurse state that her personal ethics did not allow for her to discontinue hydration and nutrition. A wise physician commented, “If I fail to honor my patient’s expressed wishes about treatment, have I not committed just as serious a breach of the ethics code?”
       Appropriate hospice care aggressively treats symptoms, whether those symptoms are physical or psychosocial. Included in this is the compassionate use of food and fluid. We can offer to find foods that the resident wants and can tolerate and that provide quality of life. Offering soft, easily tolerated foods, such as puddings, ice cream, yogurts, cream soups,

Table 2

and favorite beverages, is a good place to start (see Table 2 for a list of other appropriate uses of food and fluids). My rule of thumb: offer but do not force. Small portions and more frequent meals/snacks can be helpful. Allowing the family to sign a waiver not to give thickened liquids and/or doing away with a therapeutic diet may be significant actions to take for a person at the end of life.
       How does a care-plan team address the issues brought forth when hospice care replaces care focused on improving functional level? Rather than setting goals for weight gain, weight stability, and good meal intake, the care-plan team sets goals for pain control, psychosocial issues, and symptom management. Compassionate use of fluid and nutrition for relief of symptoms falls right into place.

Conclusion

       We can also support our residents by teaching family members that the cessation of eating and drinking is a natural part of the process of illness when it enters the terminal phase. I have even directed family members that, “Now is the time we feed the soul, because the body doesn’t need food at this time,” allowing the chaplain or bereavement counselor to take over the conversation. If I am to become an advocate for a resident who is under my care, science-based knowledge coupled with the ability to keep my emotions and personal beliefs in check are the 2 most valuable things I can use to assist families in their decision making. It is the responsibility of all healthcare professionals to fully understand the issues associated with nutrition and hydration in end-of-life care. If we fail to prepare in advance, we may find ourselves with our own Schiavo case playing itself out.