Findings and Implementation
Participants who viewed the 6 minute video about the goals of care were more likely to prefer comfort oriented measures compared to participants who received the verbal narrative.
This establishes evidence that the variances among patients choosing comfort care, limited care, or life prolonging care in end-of-life planning may be attributable to differences in health care literacy and understanding as opposed to cultural differences. Therefore proper patient education and decision support is particularly warranted. Even dementia patients with higher health literacy can benefit from a simplified delivery method.
When implementing video presentations in the facility, gender and cultural differences must be addressed. These presentations should be done at admission in order to ensure no cognitive changes have occurred since the initial assessment. Private viewing rooms and open discussion between health care providers and residents is imperative to ensure complete understanding of each level of care.
Conclusion
As the population ages, care givers in both rural and urban settings will be called upon to provide end-of-life care for the increasing number of patients dying with dementia. There are many opportunities to advance end-of-life care for this vulnerable and underserved population.
On an industry level, long term care facilities should look to end-of-life care for patients with dementia as an area ready for quality improvement. By implementing policies at admission to view video options for end-of-life preferences, patients and families can be assured a loved one receives the desired care.
REFERENCE ARTICLE:
Volandes, A, Ferguson, L, Davis, A, Hull, N, Green, M, Chang, Y, Deep, K, Paasche-Orlow, M. (2011). Assessing end-of-life preferences for advanced dementia. JOURNAL OF PALLIATIVE MEDICINE, 14(2), 169-179.
ADDITIONAL REFERENCES:
Gessert, CE., Haller IV, Kane, RL., Degenholtz, H. (2006). Rural-urban differences in medical care for nursing home residents with severe dementia at the end of life. Journal of American Geriatric Society, 54:1199–1205.
Pfeiffer, E. (1975). A short portable mental status questionnaire for the assessment of organic brain deficit in elderly patients. Journal of American Geriatric Society, 23: 433–441.
Appendix A.
Narrative Describing Advanced Dementia
I am going to describe to you an illness called advanced dementia, like advanced Alzheimer’s dementia, that you may or may not be familiar with. Advanced dementia is an incurable disease of the brain in which one is not able to communicate with others. People in advanced dementia are not able to move around or walk, get out of bed independently, eat by oneself, or communicate understandably with others. People with advanced dementia often have difficulty chewing or swallowing, and require assistance with feeding oneself. Advanced dementia is an incurable disease and most commonly occurs after many years of Alzheimer’s disease or as the result of strokes. People are not able to answer any questions or tell you about themselves.
Narrative Describing the Goals of Care
I am going to ask you a question about your preferences for medical care if you had a disease called advanced dementia. I will ask you what you prefer. You have three choices for medical care if you had this condition. I will first review these three choices with you. The three choices for medical care that I want you to think about for advanced dementia are life-prolonging care, limited care, and comfort care.
Life-Prolonging Care
The goal of this category of care is to prolong life. There are no limits to care. This choice includes everything a modern hospital has to offer to maintain your life. Such procedures include: cardiopulmonary resuscitation or CPR in which a doctor pushes on your chest when the heart stops and will often use electricity to shock the heart; being placed on a breathing machine, also known as life support, in which a tube is placed down your throat into the lungs; and other medical procedures performed in the intensive care unit or ICU. The goal is to prolong life.
Limited Care
The goal of this category is to maintain physical and mental functions. Care will depend on your physical and mental functioning. Such care includes intravenous (IV) therapies like antibiotics and hospitalization. But does not include cardiopulmonary resuscitation/CPR and intensive care unit/ICU care. The goal is to maintain physical and mental functioning.
Comfort Care
The goal of this category is to maximize comfort. Only measures that comfort or relieve pain are performed. The aim is to relieve pain and to be kept as pain-free as possible. Comfort care does not include cardiopulmonary resuscitation/CPR, respirators, intensive care unit/ICU care, and generally would not include IV therapy or hospitalization. The goal is maximizing comfort and relieving pain.
Imagine you have advanced dementia and became very ill and in need of medical treatment. What category of care would you want to have provided: Life-Prolonging Care, Limited Care, or Comfort Care?
