DYING WITH ADVANCED DEMENTIA
Last week I attended a conference at UT Southwestern Medical Center on End of Life Issues for Alzheimer’s Patients“. A presentation by Janice A. Knebl, DO, MBA, FACP, FACOI, DSWOP, that focused on artificial feeding made me aware of how important it is for medical professionals s well as civilians to understand the science as well as the moral and issues.
Those with Advanced Dementia who die in nursing facilities are not recognized as having a terminal condition, yet Alzheimer’s Disease is terminal and the 6th highest cause of death in America. Alzheimer’s sufferers do not receive care that promotes palliation and comfort at End of Life.
According to the Alzheimer’s Association Ethics Advisory Committee, “All efforts at life extension in the advanced stage of Alzheimer’s creates burdens and avoidable suffering for patients who could otherwise live out the remainder of their lives in greater comfort and peace…Cardiopulmonary resuscitation, dialysis, tube feeding, and all other invasive technologies should be avoided.”
Feeding tubes in demented patients are associated with significant increase in restraint use, ER utilization, and hospitalization. Some findings are as follows:
- Tube feeding does not prevent aspiration pneumonia; in fact, tube feeding may increase it.
- Tube feeding does not prevent the consequences of malnutrition.
- Survival is not improved by tube feeding.
- Pressure ulcers are not prevented or improved by tube feeding.
- Risk of infection is not improved by tube feeding.
- Tube feeding does not improve functional status.
- Tube feeding does not improve comfort status.
Facilities that show the highest use of feeding tubes tend to be urban, for profit, larger (> 100 beds) and have a higher proportion of non-whites. There is a higher incidence of feeding tubes in for profit facilities because they are a cost savings and the facilities receive higher per diem rates for tube fed residents.
ADVANCED DIRECTIVES ESSENTIAL
One of the common characteristics of nursing home residents with feeding tubes is that they do not have Advanced Directives (DNR, Will, Medical Power of Attorney). Many of those with Advanced Dementia do not have Advance Directives limiting aggressive care. They are more likely to receive uncomfortable interventions before death.
Those with an understanding of poor prognosis and clinical complications expected in Advanced Dementia are less likely to request burdensome treatments. Make sure that you and those you love prepare Advanced Directives long before they are needed.
TREATMENT ALTERNATIVES FOR PATIENTS WITH ADVANCED DEMENTIA
Alzheimer’s Disease must be recognized more broadly as a terminal disease. The focus should be on comfort and quality of life, not length of life. Feeding tubes and restraints should not be used. End of Life wishes should be discussed as part of the care plan. Hospice should be part of the care plan. Pain should be managed throughout the dementia process. Caregivers and family should understand the importance of the following in the care and comfort of the patient.
- Fluids every two hours
- Reduce noise and distractions.
- Portable food and finger foods
- High calorie, dense foods
- Appropriate food consistency
- Smaller plates and bowls
- Color contrast
- Appropriate utensils
- Gentle and patient hand feeding
- Take time
Less is more for patients with Advanced Dementia. There is no survival improvement with extraordinary measures. You only prolong suffering and the dying process. Focus on patient comfort and use common sense. Use the time that remains to ensure the best Quality of Life possible.