End-stage dementia and palliative care

It is widely known that the population of Canada is aging. The first members of the baby boomer generation reached 65 in 2010. By 2026, it is estimated that one in four Canadians will be over the age of 65, with the segment over 80 growing the fastest. With aging comes an increase in neurodegenerative disorders, of which dementia is the most common. The incidence of these chronic conditions rises in prevalence as deaths from cardiovascular disease and cancer de­crease, with 30% to 40% of those over the age of 85 diagnosed with some degree of dementia. 

Although patients newly diagnos­ed with an early dementia may have years of quality life to come, it is also true that dementia is eventually a fatal illness. Patients with advanced de­men­tia develop difficulties with mo­bility, lose the ability to communicate, and do not always recognize family or friends. At that point in the illness, prognosis for prolonged survival is poor, no matter how aggressively the patient is managed. 

This fact can come as quite a surprise to caregivers, including medical staff. Consequently, patients at the end stages of their illness can be subject to distressing and uncomfortable investigations and treatments that will not change the outcome significantly, but could ad­versely impact patient quality of life. They are also not offered symptom control modalities that could ease their suffering in the same way that patients with more traditionally recognized terminal illnesses are.

An eye-opening article by Dr Susan Mitchell in the New England Journal of Medicine in 2009 describes the experiences faced in the final years of some 323 residents of Boston nursing homes who were suffering from advanced dementia. Of the patients studied, 54.8% died within 18 months. Time prior to death was characterized by discomfort from dyspnoea or pain (41.1%), concurrent illnesses, and bur­densome interventions (40.7%) in­clud­ing parenteral therapy, hospitalization, tube feeding, and emergency room visits. 

After adjustment for age, sex, and disease duration, the 6-month mortality for patients who had pneumonia was 46.7%, febrile episode was 44.5%, and eating problems was 38.6%. The authors note that with the 6-month mortality of 25% and median survival of 1.3 years, end-stage dementia is comparable in life expectancy with metastatic breast cancer and stage IV congestive heart failure. An interesting observation in the study is that caregivers with an understanding of their loved ones’ prognosis were less likely to pursue aggressive, burdensome interventions.[1]

A common burdensome intervention is tube feeding. Patients with end-stage dementia can often develop dysphagia or anorexia, which may result in malnutrition, dehydration, and aspiration pneumonia. A Cochrane review has shown that tube feeding of these patients is not beneficial in preventing malnutrition, pressure sores, or functional and survival outcomes.[2] It has also been shown that tube feeding does not prevent aspiration pneumonia.[3] However, tube feeding can decrease quality of life by disrupting a patient’s food consumption and eating routine (which can be a source of comfort), and limiting human contact. 

Tube feeding can also require restraints to keep the tube in place, leading to decreased mobility, distress from the restraining process, and decubiti from immobility. Tube feeding should not be an automatic response to decreased intake of food by mouth or dysphagia in end-stage dementia. Before tube feeding is initiated, it is important that physicians ensure that a full discussion of risks and benefits has taken place with caregivers, as the patient is in no condition to give informed consent.[4]

Families are often worried about their loved one being uncomfortable due to thirst or hunger. Patients with end-stage dementia often lose their hunger and thirst drives, and forcing them to take food or fluid can sometimes cause them to be extremely un­comfortable. Offering familiar foods and fluid in small amounts—as much as they will take—can ensure comfort. Regular mouth care is also important.

Education of caregivers is essential to improving care for patients with advanced dementia. Pain and emotional distress are common in patients with advanced dementia, but these patients are often not offered the same access to palliative care modalities as patients with more traditionally recognized terminal illnesses. 

Because patients with advanced dementia can’t verbally express pain or request medication as needed, caregivers must be educated about reading signs and signals from their loved one—otherwise pain may be undermedicated or not medicated at all.[5] Although there is always fear that narcotics could cause delirium in a frail, elderly patient, untreated pain can also cause delirium. Palliative care provision for end-stage dementia should be as well standardized as it is for many other terminal conditions, given the degree of discomfort that accompanies the final stages of the disease.[6] 

Finally, patients with a diagnosis of early dementia should be encouraged to set up financial planning initiatives, update their will, consider end-of-life advanced directives,[7] and communicate with their family practitioner, friends, and family. Taking measures like these in advance is one of the best gifts patients can give their families and loved ones. Instead of struggling to make decisions in a crisis, families can be comforted in knowing that they are carrying out their loved ones’ final wishes. 
—A. Maria Chung, MD
Clinical Assistant Professor and Acting Co-Head, UBC Division of Geriatric Medicine
Geriatrics and Palliative Care Committee

References

1.    Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med 2009;361:1520-1538.
2.    Sampson EL. Enteric tube feeding for older people with advanced dementia. Cochrane Database Syst Rev 2009;(2):CD007209.
3.    Finucane TE, Bynum JP. Use of tube feeding to prevent aspiration pneumonia. Lancet 1996;348:1421-1424.
4.    Chung AM. Percutaneous gastrostomy feeding tubes in end stage dementia: Don’t just do it. Can Assoc Radiol J 2012,63(Suppl3):S5-6.
5.    Morrison RS, Siu AL. A comparison of pain and its treatment in advanced dementia and cognitively intact patients with hip fracture. J Pain Symptom Manage 2000,19:240-248.
6.    Coleman AM. End-of-life issues in caring for patients with dementia: The case for palliative care in management of terminal dementia. Am J Hosp Palliat Care 2012;29:9-12.
7.    BC Medical Association. Advance Directives. Accessed 28 May 2013. www.bcma.org/news/advance-directives.