End-of-life care

What is end-of-life care?

End-of-life care aims at ensuring the best possible well-being, comfort, and quality of life at terminal stages of illnesses, in the final months or weeks before death, and during the process of dying. End of life care addresses physical, psychological, social, and spiritual needs of people at the end of their lives.

Is there a difference between end of life care for people with or without dementia?

A key principle of end-of-life care is to respect the person’s individual decisions, needs and preferences. However, at the advanced stage of dementia people are usually unable to express their needs and voice their decisions. Therefore, needs and wishes of the individual must often be inferred from changes in activity, facial expression, movements, body posture, vocalisations, or refusal of food. Another feature of advanced dementia is that people commonly do not understand and may misinterpret their environment as well as the actions of other people. Therefore, nursing activities must be carried out very gently and mindfully. Medical challenges in people with dementia are spasticity of movements, difficulty swallowing, pain, shortness of breath, nausea and agitation. Intake of foods or liquids and inappropriate postioning in the bed can be a big issue.

When should end-of-life care begin?

Caregivers should start thinking about end-of-life issues when the person with dementia shows difficulty swallowing, choking, falls, epileptic seizures, or significant weight loss. End-of-life care involves planning, anticipation of future problems, execution of appropriate care, counselling of family caregivers and treatment of symptoms. Planning end-of-life care should include the person with dementia as much and as long as possible.

How is discomfort detected in people with dementia?

Discomfort and pain are often related to problems with muscles and bones, infections or injuries. They may reduce cognitive abilities and cause agitation, aggressiveness, depression, apathy as well as eating and sleep disturbance. People with dementia may no longer be capable of verbal expression. Therefore, it is key to be watchful of behaviours that are related to discomfort and pain, such as change in activity, facial expressions, vocalisations, body posture and movements, or refusal of food.

How are distressing symptoms in people with advanced dementia managed?

The most burdensome symptoms for people with advanced dementia are pain, shortness of breath, agitation, anxiety, confusional states, nausea and vomiting, fever, and inability to take in food or liquids. Physical causes of agitation and anxiety must be identified and treated appropriately. Whenever possible, non-pharmacological interventions should be tried in the first line. Tube feeding should be avoided.

The challenge of nutrition

People with advanced dementia often need to be fed, refuse food, or choke on liquid or solid food. Eating problems also include pocketing or spitting, and aspiration which can lead to lung infection (pneumonia). Pain in the mouth and dental problems also can contribute to malnutrition. Problems with eating and drinking may be addressed with strained foods, thickening of fluids, and specially designed spoons. Gastrostomy tube placement (PEG) or other long-term enteral access devices do not improve survival rates and are associated with an increased risk of pressure ulcers, physical and chemical restraints (to prevent the person from pulling out the tube). Therefore, these devices should not be used in people with advanced dementia or other near end-of-life conditions. 

Reference

• Statistisches Bundesamt (Destatis), Wiesbaden 2019