A resident of a skilled nursing facility is at risk for aspiration as a result of a recent stroke, but refuses thickened liquids and insists on drinking water with her meals.
Another resident has elevated blood pressure, but doesn't like and refuses the low-salt meals that are provided. He is losing weight and his health is deteriorating.
These residents' difficulties illustrate a situation common in residential facilities: the loss of autonomy and decision-making abilities in the name of safety and health. Those living independently may, indeed, consider advice from health care professionals when they make choices about their lives, but the ultimate decisions are theirs. Residents of facilities who resist prescribed care may be called "non-compliant" and viewed by facility staff as difficult residents.
Striking a balance between health and safety and a person's right to choose is the focus of the Pioneer Network, a coalition of organizations and individuals committed to changing the culture of aging and long-term care. The Pioneer Network seeks fundamental changes to long-term care practices to make them more person-centered and allow for autonomy and personal choice.
The Pioneer Network recently convened stakeholders from a variety of organizations and agencies, including the Centers for Medicare and Medicaid Services, to address food and dining issues in long-term care. ASHA, as the representative for speech-language pathologists—the primary service providers in the area of swallowing—was invited to participate in the informational symposium and subsequent stakeholder meeting. The purpose of the meeting was to develop food and dining practice standards that move away from diagnosis-focused treatment toward more self-directed living—while at the same time supporting safety and quality care.
At the heart of the issue are data that show a majority of skilled nursing facility residents leave food uneaten, resulting in weight loss and other nutritional concerns. To compensate, many residents receive (but often do not consume) nutritional supplements. A major contributing factor to the poor intake is that many residents receive therapeutic diets (e.g., diabetic, low-sodium, or low-fat) and/or altered diets for individuals with dysphagia. These diets are often unpalatable, unimaginative, and unattractive, which leads to rejection.
The new dining practice standards reflect evidence-based practice, consideration of the whole person, and honoring choice (Pioneer Network Food and Dining Clinical Standards Task Force, 2011; New Dining Practice Standards. Chicago, IL: Author). The recommendations include the following:
- Determine diet with the resident and in accordance with his/her informed choices, goals, and preferences, rather than exclusively by diagnosis.
- Assess the condition of the person. Include quality-of-life markers such as satisfaction with food, meal time, level of control, and independence.
- Unless a medical condition warrants a restricted diet, consider beginning with a regular diet and monitoring the resident's condition.
- Empower and honor the person first, and the interdisciplinary team second, to look at concerns and create effective solutions.
- Support self-direction and individualize the plan of care.
- Ensure that the physician and consultant pharmacist are aware of resident food and dining preferences so that medication issues can be addressed and coordinated (i.e., medication timing and impact on appetite).
- Monitor the person and his/her condition related to goals regarding nutritional status and physical, mental, and psychosocial well-being.
- A person's inability to make decisions about certain aspects of his or her life does not mean the person cannot make dining choices.
- When a person makes "risky" decisions, the plan of care will be adjusted to honor informed choice and provide supports to mitigate the risks.
- Most professional codes of ethics require the professional to support the resident in making his or her own decisions and taking an active, rather than passive, role in his or her own care.
- All decisions default to the resident (Pioneer Network Food and Dining Clinical Standards Task Force, 2011, p.11).
There is often no clear right answer in caring for frail elders. Possible interventions often have the potential to help and harm a resident, and health care providers must explain the risks and benefits to the resident and interdisciplinary team. The information should be discussed among the team and resident/family. The resident then has the right to make his or her informed choice—including disregarding medical advice. The team should support the person and his or her decision and mitigate risks by offering support (e.g., offering foods of natural pureed consistency when a patient refuses tube feeding). The agreed-upon plan of care should then be monitored to make sure the community is best meeting the resident's needs.
ASHA has accepted these standards and will disseminate the information to support culture change regarding food and dining in nursing homes. The complete report and additional information about the Pioneer Network can be found at Pioneer's website.