White Paper on Surrogate Decision-Making and Advance Care Planning in Long-Term Care

Some Important Clinical Issues

Understanding of the evidence about outcomes of specific treatments can help guardians to make decisions. A brief summary of research about some specific medical interventions in incapacitated long-term care facility residents here follows. It is important to note that in most instances the outcome data and other information presented is in the context of caring for incapacitated elderly long-term care facility residents, particularly those with dementia, and may or may not be applicable to children or younger adults in long-term care.

Cardiopulmonary Resuscitation (CPR)

Current federal law mandates that long-term care facilities must ask residents (or their surrogates) whether they wish to receive CPR in the event of a cardiac or respiratory arrest. Research on CPR performed on elderly nursing home residents consistently shows very poor outcomes. Survival following CPR is less than 5% in this population, with most studies showing 0% survival.^21,22 The poor outcome of CPR in nursing home residents is more likely a result of the irreversibility of the underlying diseases that end in cardiopulmonary arrest in such patients.

The way in which treatments processes and outcomes are described strongly influences the decisions of patients and surrogates with regard to those treatments.²³ When presented with information about the actual likelihood of surviving CPR, for example, older patients who have previously expressed a wish to undergo CPR generally decide not to.^23,24,25

Despite consistent evidence of its ineffectiveness, CPR continues to be offered and performed in long-term care facilities, by either facility staff or emergency medical technicians.²⁶ Nursing facilities are prevented from implementing facility-wide "do not resuscitate" (DNR) policies and procedures,²⁷ and are required instead to ensure that decisions about resuscitation be expressed by individual residents or their surrogates.

In the case of CPR performed in the long-term care facility, the level of discordance between outcome data and national policy, or between evidence and practice, is extreme. This highlights the importance of educating patients, surrogates, and health care providers about the outcomes of specific medical interventions. The issue of CPR may also reflect our society's unrealistic expectations of technological interventions, even in situations in which they are likely to fail. Moreover, lawmakers and regulators may be averse to system-wide or facility-wide policies that might be viewed by some as denying choice or care to patients. Based on the best available evidence, however, it is recommended that CPR not be performed in mentally incapacitated elderly long-term care facility residents unless they have clearly indicated their desire for such treatment before becoming incapacitated.

Tube feeding

Enteral (nasogastric, gastrostomy or jejunostomy) tube feeding has recognized benefits in specific clinical situations, for example, in the treatment of acute stroke when swallowing is impaired. In the setting of severe dementia, however, its benefits are questionable.

The natural history of dementia often results in loss of ability to swallow without a significant risk of aspiration. At this stage of dementia, some clinicians initiate tube feeding in an attempt to prevent aspiration pneumonia, malnutrition and its consequences, pressure ulcers, provide comfort, or prolong life. The published research about tube feeding in nursing facility residents with advanced dementia has been extensively reviewed.^28,29 There is no good evidence that tube feeding succeeds at avoiding or reversing any of these poor outcomes.²⁸ Specifically, there is no evidence that tube feeding reduces the risk of aspiration pneumonia. In fact, the risk of aspiration pneumonia may actually be increased by tube feeding.²⁸ Furthermore, the leading cause of death in tube-fed patients with dementia is aspiration pneumonia.²⁸ Nasogastric tubes violate the gastroesophageal sphincter and, like gastrostomy tubes, provide a ready source of material in the stomach for reflux and aspiration. Nor is jejunostomy is associated with lower rates of pneumonia than gastrostomy, as neither procedure eliminates aspiration of nasopharyngeal secretions.

To date, there is no evidence that tube feeding prolongs survival among older nursing home residents. One-year mortality among tube-fed older nursing home residents with severe cognitive impairment is significantly higher than that of those not treated with tube feeding.^30,31,28 There is no published evidence to indicate that tube feeding improves the outcomes of pressure sores in this older population.²⁸

The decision to initiate tube feeding in severely demented or terminally ill long-term care facility residents is generally based on a desire to provide adequate nutrition and to prevent suffering and inexorable deterioration. Many people consider it unethical to do otherwise. Unfortunately, the use of feeding tubes in the terminally ill (such as those with end-stage malignancies) may prolong suffering, and their use in the severely demented may be counterproductive. Initiation of tube feeding in a cognitively-impaired long-term care facility resident often has adverse outcomes aside from aspiration pneumonia. Placement of the feeding tube itself has associated morbidity. Cognitively impaired residents may inadvertently or intentionally remove feeding tubes, requiring subsequent reinsertion. Physical and chemical restraints are sometimes used under such circumstances to prevent patients from removing their feeding tubes, however, physical and chemical restraints have their own adverse consequences, including discomfort, aspiration, pressure sores, and reduced quality of life. Tube feeding deprives patients the enjoyment of tasting food as well as contact with caregivers during the feeding process.

Tube feeding is not necessary to prevent suffering during the dying process. Terminally ill patients often stop eating or drinking in the days or weeks before death. Those who are cognitively intact and able to communicate frequently indicate that they do not experience hunger, thirst, or discomfort as a result of having stopped eating or drinking. Symptoms related to dry mouth can effectively be relieved with sips of water or periodic swabbing of the mouth. While patients with severe dementia may be unable to report whether they experience pain, hunger or thirst from not eating or drinking, observational studies have not shown any physical or physiologic signs of distress among those in whom tube feeding is not provided. There is no evidence that voluntary cessation of eating and drinking makes terminally ill persons physically uncomfortable.²⁹

Based on the best available evidence, therefore, it is recommended that tube feeding not be initiated in severely demented patients unless they have clearly indicated their desire for such treatment before becoming incapacitated.

Hospitalization

In patients with severe dementia, hospitalization for the treatment of acute illness entails serious risks. Even cognitively intact elders when hospitalized have an increased incidence of confusion, anorexia, incontinence, falls, deconditioning and inactivity.³² These conditions can result in such medical interventions as the use of psychotropic medications, restraints, nasogastric tubes and urinary catheters, all of which carry their own risks such as thrombophlebitis, pulmonary embolus, aspiration pneumonia, urinary tract infection, falls and sepsis.

Hospitalization is not always the best method for managing infections or other acute conditions in nursing home residents.³⁵ For example, hospitalization is not always necessary for optimal treatment of nursing home-acquired pneumonia. Immediate survival and mortality rates are comparable between patients treated in the long-term care facility and those treated in the hospital^36,37,38, and 2-month survival is higher in patients treated in the nursing home compared with those treated in hospital (Fried JAGS 1997)

Hospitalization itself is associated with additional loss some functional ability, such as the ability to transfer, toilet, feed or self-groom. These functional losses do not improve significantly by discharge, and they resolve more slowly than the acute illness that precipitated the hospitalization.³³ A large percentage of long-term care facility residents are older adults with preexisting pressure sores, cognitive impairment, decreased physical or social activity, and are thus at added risk for these complications.³⁴ Hospitalization of many long-term care facility residents thus exposes them to substantial risks that require important consideration before deciding upon hospital transfer. Emergency room or hospital transfer should be used only when it is consistent with the overall goals of care, and not as a default option when an unexpected acute illness arises.

Antibiotic Therapy

In older patients with acute infections such as pneumonia, treatment with antibiotics administered orally is often just as effective as antibiotics administered parenterally.⁴⁰ Intravenous therapy is difficult to administer to cognitively impaired patients, as they may not understand its rationale but may experience discomfort from it and try to remove the intravenous access catheter. In patients for whom parenteral antibiotics are indicated by the severity of the illness, once-daily cephalosporin therapy administered intramuscularly may offer a reasonable alternative to intravenous therapy for many infections.

In patients with advanced dementia, the effectiveness of antibiotic therapy may be limited by the recurrent nature of their infections, because the underlying causes of the infections, such as impaired swallowing, aspiration, and decreased immune function, persist after treatment of each acute episode.⁴¹ Use of antibiotic therapy for infections does not prolong survival in patients whose cognitive impairment is advanced, in those who are unable to walk unassisted, or in those who are mute as a result of severe dementia.⁴² Antibiotics do not prolong survival in patients with advanced dementia and fever.⁴² Antibiotics may not necessarily even provide comfort in patients with dementia who develop acute infection. In a study of patients with dementia treated with antibiotics for acute infection, no difference was found in patient discomfort compared to similar patients not receiving antibiotic therapy.^43,44 Analgesics, antipyretics, and oxygen can provide adequate comfort in the absence of antibiotics.

Antibiotic therapy is associated with numerous adverse effects, such as gastrointestinal upset, c. difficile infection, diarrhea, allergic reactions, hyperkalemia and agranulocytosis. While diarrhea may be a temporary annoyance to younger patients, in immobile patients and those with dementia, it can result in fecal incontinence that may lead to problematic skin breakdown. In addition, procedures that are often performed in order to diagnose or treat infections (i.e.blood-drawing, sputum suctioning) are associated with at least moderate discomfort. These procedures may also increase agitation in cognitively impaired patients who cannot understand or remember the reasons for them. Moreover, diagnostic procedures frequently fail to indicate the source of fever in these patients.⁴² Treatment is therefore often empiric. The decision to use antibiotics in long-term care facility residents with advanced dementia should take into account the recurrent nature of these infections in such patients, the adverse effects of antibiotics, the discomfort produced by accompanying diagnostic and therapeutic procedures, and the absence of evidence that these measures enhance some patients' comfort.