Food is love, food is caring. The first time I thought about the "comfort care" side of nutrition and dying was in Zimbabwe, Africa. A San Bushman in the Kalahari desert described how "the end" comes while looking at a vividly drawn cave painting. He stated that "when a person is too old to walk to the next campsite, they are provided with food, water and spears behind a thorny thicket fence. Contact is made to the ancestor spirits, family members say good bye and the band moves on."
Out in the desert of South Africa that works, but in modern day life many families and patients are caught up in the terror and fear of the end-of-life. Food and feeding options can provide comfort for the patient and family as they transition into acknowledging the impossibility of everlasting self-preservation. Palliative nutrition care-when death is not imminent within a six month period-can keep individuals more focused on improving quantity and quality of life instead of curing a disease.
As a hospice dietitian, my goal is to find out what is important to the person, what they and their family care about and what they hope to accomplish as their life-threatening illness consumes more of their day. Most of the patients and families that I have worked with want to avoid hospital, but they are at a loss for moving beyond the learned helplessness that the current medical system has provided. Each case of palliative nutrition counselling is unique. One case may require menu ideas and cooking tips for a frail caregiver with diabetes who relies on frozen meals to feed her sarcopenic COPD husband. Another consult may involve a family member requesting organic food for their father who has lost the ability to swallow. The most challenging cases are individuals with depression caused from a stroke which resulted in a PEG tube placement because advanced directives were not in place.
Nutrition is important not only to meet the body's physical requirements but also many social and psychological needs. When a patient experiences reduced oral intake whether from distractions (dementia) or swallowing difficulties or pain, nutrition supplementation needs to be designated to meet the goals of the patient and the family.
In palliative and hospice care, restrictive diets are not needed and can do more social and emotional harm than good. Limitations of high sodium foods may be helpful to reduce thirst and fluid retention but calculating a 2-gram sodium diet and educating a family for compliance would not be in the best interest of the patient. Many cancer patients prefer sweets to protein foods so as body systems begin to shut down and early satiety is a problem, small amounts of protein in an easy-to-digest form would be recommended.
Nutrition needs change as illness progresses, resulting in fewer calories consumed. Food cravings often change frequently. Family members and caregivers must be careful to not make patients feel guilty about not eating enough. Eating can temporarily relieve symptoms and improve vitality so offer favourite foods whenever the patient wants them.
Here are the general guidelines that I keep in mind for each palliative and hospice care case:
• Discuss sleep, mood and energy needs of the body
• Encourage protein foods and discourage foods causing metallic and bitter taste
• When a patient reports nausea, avoid discussing food unless patient is comfortable talking about food
• Medication and metabolic disorders can alter saliva production so moist foods with liquids may be needed
• Don't hesitate to request dysphagia assessment for swallowing ability.