On the whole, medical texts do not provide a satisfying answer to whether age is a disease or could be. (Spiro, 1988)
Where should we look to find the causes of and cure for aging? (Wilson, 1977)
As speech-language pathologists, our professional duties increasingly include providing dysphagia services to patients who have reached an advanced age and who have the realistic expectation of mortality. Unfortunately there is a poorly formed relationship between aging bodies, medical practice, and the dying transition. Modern American clinical medicine has an inclination to action with continued treatment of specific diseases and problems in the frail elderly even when it is understood that the outcome of treatment cannot always be a cure.
Persons over the age of 65 constitute the vast majority of deaths in the United States; of those, most occur in acute-care hospitals. A very high proportion of the elderly receive intensive care unit treatments or some other form of high-technology intervention at the end of life. Contemporary medicine proliferates the blurring of the boundaries between normal and pathological aging, frequently equating aging with disease.
Strangely, no one is officially permitted to die of "old age." In 1951 the National Office of Vital Statistics ordered all state and federal agencies to adopt a standard list of 130 contributing and underlying causes of death. None of these 130 identifiers included natural causes or advanced age. As a result physicians are prevented from writing "old age" on death certificates and instead are forced to use specific clinical pathological descriptors. Thus, people in modern America die only of discrete diseases.
This situation raises several questions for SLPs, who are faced with increasing numbers of seriously ill and dying elderly patients presenting with dysphagia in a variety of settings: Does this phenomenon lead to the pursuit of "treatment" of those diseases, regardless of outcome for the patient? Should SLPs be involved in palliative care issues: that is, providing care to patients whose disease no longer responds to curative treatment?
Dysphagia in the Frail Elder
A high percentage of elderly patients with disease processes such as Parkinson's disease or Amyotrophic Lateral Sclerosis (ALS) are expected to experience some degree of dysphagia, which is readily identified and managed during the evolving procession of the disease or acute medical event. In some cases the elderly patient will present with dysphagic symptoms and an overall physical condition that is worse than any specific disease from which the patient is suffering. This physical descent is disproportionate to the patient's physical and psychological condition and is usually beyond the expected age-associated "normal" decline. The clinical picture for these patients typically provides few indications of the cause or treatment of the physical deterioration.
The medical community has identified this syndrome of deterioration with various monikers such as "slipping syndrome," "wasting syndrome," "dwindling adult," and most frequently "failure to thrive." In this syndrome, the frail elder is in a clinical state of vulnerability to stressors that results from aging-associated declines in resiliency and physiologic reserves and the progressive decline in the ability to maintain biological stability.
For the elderly population some authors attempt to differentiate between frailty and "failure to thrive." The incidence of frailty in the elderly is estimated to be from 4%-10% of those 65 years of age, to greater than 55% for 90-year-olds. Of 985 patients older than 65 admitted to the Palo Alto Veterans Administration, 27% were judged to be frail; of those, 45% had a one-year mortality rate. In contrast to frailty, which suggests a risk of deterioration, "failure to thrive" is considered a process of deterioration, and for many, a condition of "pre-death."
Frailty and Functional Reserve
The size and nature of the parts in a body's system must be matched to the overall functional demand and must be robust enough to cope with the highest expected functional demands. A well-integrated and healthy body must include some safety margin to prevent the body's system from failing when it is overloaded by physical exertion, injury, infection, starvation, and dehydration.
For most of the body's systems, we use only 30% of normal capacity to perform activities of daily living. In other words, our maximum ability to lift heavy weights, walk long distances or toil in the hot sun is, in most instances, far greater than our need to maintain function. With this reserve power, the normal functioning body is prepared to accomplish extraordinary physical tasks when it is necessary for survival. For most healthy individuals there is a 70% margin of loss before evidence of failure presents itself.
In the normal elder there is a decline in functional reserve, which has been demonstrated in tasks such as ambulation and weight-lifting. Changes in functional reserve are evidenced by recent advances in measuring lingual pressure and muscle composition in the aged population. Nicosia et al. (2000) demonstrated age-related changes in isometric lingual pressure generation and in peak lingual pressures used in swallowing as compared with younger individuals. When elderly individuals were asked to give a maximum effort in pressing their tongue against a manometric array, peak pressures were lower when compared with a younger group, while the peak swallowing pressures remained roughly equivalent.
This study demonstrates that although there is an expected reduction in functional reserve in the normal elderly, the pressure needed to perform the task of swallowing still is within their range of strength. Changes in swallowing occur as we age, with increased oral and pharyngeal transit times, longer duration of pharyngeal pressures, and a higher incidence of pharyngeal residue after swallowing (Nilson, 1996). It is possible that these findings indicate that the healthy normal elders accommodate physiologic decline and use available strength more efficiently as they age. However, when an overlying disease process is present in an elder, the delicate gap between reserve and minimum necessary strength can be compromised, leading to poor outcome (Barczi, Sullivan, & Robbins, 2000).
The Frail Elder and Palliation
Many individuals choose to die in the hospital, but as recently as five years ago about three-fourths of teaching hospitals in the United States lacked an interdisciplinary team approach to end-of-life care designed to maintain function, relieve suffering, and promote the best possible quality of life for patients and their families (Pan et al., 2001). Care of patients nearing the end of life should start at the time of diagnosis and continue through the dying process. SLPs must be involved in a multidisciplinary process that actively educates patients and their families about their disease process and its impact upon nutrition and swallowing, helping them to make good decisions in a supportive environment.
There are questions to be considered by the patient, family, and medical team, centering on artificial nutrition and hydration (ANH) when nutritional status or swallowing safety is compromised. Will it:
- Improve nutritional status?
- Decrease risk of disease?
- Increase length of survival?
- Improve comfort/quality of life?
ANH may improve the nutritional status of patients with advanced cancer undergoing radiation therapy (Lee et al., 1998). In elderly patients with advanced dementia, ANH can increase complications such as aspiration pneumonia and infections, and cause discomfort because of the increased need for restraint and sedation and the deprivation of enjoyment derived from eating. "…Although oropharyngeal dysphagia may be life-threatening, so are the alternatives, particularly for the elderly population. Therefore, contributions by all team members are valuable in this challenging decision-making process, with the patient's family or care provider's point of view perhaps the most critical contribution" (Robbins and Kays, 2006).
Clinicians can help to alleviate fear and allow natural progression of illness to death by teaching patients and their families that suffering will not occur when nutrition and/or hydration are withheld at the end of life. Withholding fluids in dying patients can increase patient comfort as secretions are diminished, urine output is reduced, and nausea, vomiting, bloating, and regurgitation can be diminished. Terminally ill patients stop wanting foods and fluids and symptoms of hunger, thirst, and dry mouth can be alleviated with small amounts of foods, fluids, and/or application of ice chips and lip lubrication (McCann et al., 1994).
The professional understanding of what palliative care is and when it should be provided is improving. As recently as 2001, fewer than 40% of Veterans Health Administration (VHA) medical centers had a formal palliative care program. Current national policy mandates that all VHA facilities have a palliative care consult team. In the past two years, VHA has tripled the number of veterans receiving hospice care at home and in inpatient VA facilities (Edes and Shreve, 2006). This growing demand and focus on end-of-life care highlight the critical need for advances in health care provider training, outcome measures, and resources to enhance care for patients and their families as we venture into domains far beyond the traditional medical model approach.