Speech-language pathologists require a specialized set of skills to treat end of life (EOL) patients with dysphagia. SLPs must advance their diagnostic and prognostic skills, adapt treatment plans, and facilitate patient/family communications. The EOL population includes patients who are seriously ill and exhibit multiple comorbidities such as advanced age, progressive disease, or advanced dementia, and does not include patients in persistent vegetative state.
The technology of artificial hydration and nutrition (AHN) may prolong a patient's life, but at what cost? Callahan (1993) notes, "Advanced technology has allowed life support, including AHN, to become common healthcare practice; however, a major dilemma arises when clinicians must determine when technologies stop benefiting and actually become harmful to patients." The American Academy of Hospice and Palliative Medicine states that when a person approaches death, AHN is potentially harmful, may provide little or no benefit to the patient, and may make the period of dying more uncomfortable for both the patient and family. The Academy finds metabolic function naturally declines at EOL and that the body cannot adequately utilize nutrition and hydration.
A longstanding assumption exists within the medical community that AHN benefits patients by prolonging life, minimizing aspiration, and promoting nutrition while healing wounds and improving function (Post, 2001). This is true in some populations. However, AHN does not prolong life in patients with terminal illness, chronic/progressive illness, and those with advanced dementia.
In addition, research about withholding or withdrawing nutrition and hydration dispels some common beliefs about what happens to the body during the dying process. For example: Terminally ill patients naturally stop wanting food and fluids (Schmitz, 1991; Printz, 1988; Zerwekh, 1983); patients do not die of starvation, but of dehydration (Smith & Andrews, 2000); and patients report that dehydration has an analgesic effect, thereby increasing patient comfort (Post, 2001; Smith & Andrews, 2000). While some people experience dry mouth and a sensation of thirst, this can be alleviated with good oral care and small sips of water (Daly, 2000; McCann, Hall, & Groth-Juncker, 1994).
It is important to note that AHN does not necessarily prevent aspiration, and can be associated with increased pneumonia and pneumonia death. Percutaneous endoscopic gastrostomy (PEG) feedings cannot be expected to prevent aspiration of oral secretions, and hyperalimentation causes formula to reflux into the esophagus and pharynx causing aspiration.
Finally, tube feeding does not always improve physical function, weight gain, nutritional status, or wound healing. In addition, Finucane et al. (1999, 1995) notes that tube feeding has no effect on malnutrition or wasting syndrome in chronically ill patients. They also find that tube feeding does not assist in healing pressure ulcers.
Identifying the EOL Patient
Evaluation of the EOL patient differs from one who is expected to make a reasonable degree of recovery in that the SLP needs to spend additional time communicating with the health care team. The team must come to a consensus concerning the patient's medical prognosis in order to develop a plan of care that is consistent across all disciplines. This allows the team to "speak with one voice" when discussing sensitive information with the patient and family, therefore minimizing confusion regarding the plan of care.
The swallow evaluation includes a bedside evaluation and, as needed, a modified barium swallow study. The evaluation also includes a review of the patient's current and premorbid levels of function, medical status, nutrition and hydration status, and patient/family wishes. Once this information is gathered, the SLP needs to weigh the swallow prognosis and nutrition/hydration options with the patient's medical prognosis. We need to ask, "How close is this patient to end of life?"
The answer is not always simple or clear cut. Brown's End-of-Life Decision Tool helps to visualize this process by weighing patients' premorbid level of function against their medical status. For example, if a patient with a high premorbid level of function suffers an acute event and is medically stable, the patient has a reasonably good prognosis and will likely benefit from intervention. Conversely, if a patient with a low premorbid level of function suffers an acute event and is medically unstable or critically ill, the patient may be nearing the EOL and may not benefit from aggressive intervention. If a patient with a compromised premorbid medical and functional status suffers an acute event, the patient's ability to benefit from intervention may be unclear. A trial treatment period is helpful to determine whether treatment will be beneficial and if recovery is possible.
Developing a Dynamic Treatment Plan
The goal of the treatment planning session is to assist the patient and family in making informed decisions. Each patient and family will weigh quality of life and potential benefits and burdens differently. What may be burdensome to one patient may not be to another. For example, the patient may wish to receive AHN to be present for an anticipated birth or an important anniversary. Conversely, another patient may see AHN as a prolongation of suffering.
Groher (1990) and Sharp and Genesen (1996) recommend reviewing all risks and benefits when weighing feeding options. During the patient and family treatment planning session, Groher suggests that the SLP clarify if the patient and family view AHN as a part of routine or mandatory care. He also suggests that the health care team discuss with the patient and family whether the provision of AHN to those with terminal diseases "causes the patient to continue to suffer by allowing him or her to survive longer than if the feeding was withheld."
Sharp and Genesen suggest that the health care team discuss four areas when devising a treatment plan with the patient and family: medical indications, patient preferences, quality of life, and contextual features. Medical indications encompass the medical history, prognosis, and the futility of continued treatment. Patient preferences include a discussion of the patient's values (this should cover review of a Living Will or a Durable Power of Attorney for Health Care, religious beliefs, and goals of treatment). Quality of life encompasses concepts such as the influence of psychosocial, cognitive, religious, or other spiritual influences. Contextual features include social factors, cultural differences, financial issues, legal considerations, institutional policies, family preferences, and the burdens of care upon the care providers.
Once the above factors are discussed, the patient and family will work with the SLP and others on the health care team to decide upon the feeding or non-feeding options. These options include eating and drinking orally (with feeding assistance), tube feeding, a combination of the two, or withholding or withdrawing hydration and nutrition. Other considerations may include total parenteral nutrition or a pre-determined timed-trial (e.g., a specific number of days/weeks) for tube feedings or oral diets. The plan must place primary emphasis on the patient's wishes regardless of potential outcome. For example, if the patient chooses to risk aspiration by taking small sips of thin liquids, the patient should be supported in the decision. The health care team should be available to the patient and family to answer questions and to provide support as the plan is instituted.
Documentation is critical. It should be an accurate, chronological, concise, legal record of the medical diagnosis and prognosis, risks and benefits of specific options, and patient and family wishes and their decisions. Information regarding statements from a Living Will or a Durable Power of Attorney for Health Care should be included in the documentation.
It is also helpful to document patient and family statements and refer to physician documentation of "do not resuscitate," "no code," or "no tubes." Specific orders may also be written, such as, "Per patient wishes, the patient is allowed to take an oral diet." Some medical facilities may require an Informed Consent.
Education and Treatment
Treatment for dysphagia patients at EOL requires special emphasis on education and training to give families the confidence to provide comfort care. The health team should know their state's laws regarding end of life care and provide full information to the patient/family regarding options, including hospice.
Treatment is typically short-term and focuses on maximizing safety by teaching the patient/family compensatory swallow strategies, how to prepare modified food/liquid consistencies, and monitor for aspiration symptoms. As the patient's status changes, families are taught to minimize risks by adjusting compensatory strategies and diet textures.
End of life issues and concerns are difficult to talk about. Providing a supportive environment where patient and family concerns and traditions are acknowledged and respected is essential. They should be given time to weigh options and ask questions. If presented with a complex case involving conflicts of opinion, a referral should be made to the appropriate ombudsman or hospital ethics committee. SLPs provide valuable assistance to the patient nearing end of life. As part of the health care team, the SLP plays a vital role in helping the patient achieve a dignified death.
Brown's Tool [PDF]