Chapter 19 Palliative Care: End of Life

GOALS OF NUTRITION CARE Although clients with a terminal diagnosis often feel a loss of control, nutrition is one aspect of their care that they often feel they can control. Allowing clients to help their well-being through what they eat and drink is important. Clients usually desire a proactive approach to nutrition care early in the diagnosis of their illness (7).

O’Sullivan Maillet suggests that the responsibility of health care providers to client’s early in the diagno- sis of a terminal disease is to encourage a varied food intake, weight maintenance for those who are over- weight, and weight maintenance or increased weight if possible for those who are underweight (8). Encourag- ing intake of a varied diet that is calorie appropriate is a way to put control into the clients’ hands. Liberal- ization of diets can go a long way in giving residents a sense of control and in encouraging them to eat a varied and calorie-appropriate diet (9). Families of terminally ill clients frequently feel powerless. Including them in nutrition-counseling ses- sions can bring them into the care of their loved one. Family members can reinforce nutrition principles and encourage eating; however, they should be cautioned that there is a fine line between nagging, which is counterproductive, and encouragement (10). Goals of nutrition care for clients with a terminal disease who have chosen palliative care are very indi- vidual. Goals may also vary as the illness progresses. For example, the nutrition goals for the client whose life expectancy is several months or longer may be to provide tube feeding to prolong length and quality of life. Nutrition support via percutaneous endoscopic gastrostomy tube feeding can achieve this goal for a client with amyotrophic lateral sclerosis (ALS) who has dysphagia and is at risk for suboptimal energy and fluid intake, worsening of muscle atrophy, weakness, and fatigue (11). Similarly, tube feeding may be appro- priate for clients undergoing aggressive cancer thera- pies or for clients after a stroke when rehabilitation is the primary goal (12). However, the nutrition goal for a palliative care client, whose life expectancy is short, may be to use food and drink as little or as much as desired by the client to maximize enjoyment and to minimize pain (6). When eating and mealtimes can accomplish either of these goals, they should be enjoyed. If eating is not an enjoyable experience, however, then eating and mealtimes should not be overemphasized. It is at this time that registered dietitian nutritionists (RDNs) can be strong client advocates and family allies by reassur- ing both that loving care can be demonstrated in ways other than dining (13).

THE REGISTERED DIETITIAN NUTRITIONIST’S ROLE IN

ACHIEVING NUTRITION GOALS Health care providers, including the RDN, should start talking about end-of-life care when the patient is first diagnosed with a life-threatening illness (14). According to Maurer Baack:

The role of the nurse . . . is first, to come to terms with personal, psychological, and moral and ethical issues surrounding nutrition and hydration on an individual level; and second, to enter into a partnership with the client and family and guide them through the storm of emotions and questions using a framework based on principles of ethics, crisis intervention, and effective communication. (15)

Maurer Baack’s advice to nurses applies to RDNs as well. After self-understanding, the RDN will perform several functions to achieve nutrition care goals, such as (7):

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assess the client’s physical and psychological condition for the role that curative and palliative treatments, food, and mealtimes have on causing symptoms, and ascertain if dietary modifications can alleviate these symp- toms and improve well-being;

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identify the client’s and family’s nutritional con- cerns and dietary questions;

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establish goals of treatment and integrate dietary interventions as appropriate into the overall plan of care;

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counsel the client and family on specific and prac- tical dietary modifications that can enhance well-being; and

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reevaluate nutrition goals and interventions peri- odically, and implement changes when appropriate.

Assessing the Client’s Condition Assessment is the first component in the provision of nutrition care; a plan of care is only as good as the completeness and accuracy of the data collected and the assessment of the client’s condition and the fami- ly’s situation. Box 19.1 (see page 270) contains an assessment instrument that includes important nutrition-related questions that the facility or home care nurse might ask the client and family during an initial visit and during ongoing visits. Answers to these questions will give clues about the nutritional status and eating behavior of the client. In addition, use of this tool

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