Dementia, Palliative Care, and End of Life: Are We Doing It Right?
By Jamie Wilson
“I am not afraid of dying. I am afraid of suffering. Don’t let me suffer. Okay? Don’t let me suffer.” My mother said this to me long before she ever got sick, long before Alzheimer’s disease ravaged her brain, long before I even understood what she was saying or believed that she could ever be sick or die. My mother watched her mother died of Alzheimer’s disease. It was a slow, insidious and undignified illness and death. She didn’t want that. No way.
I promised Mom on the day she said those words that I would always take care of her and I kept that promise. But, I think I could have done better. When she was diagnosed with AD I read every book, earned every certification and became an authority on dementia in order to protect her and her dignity until the very end. By the time she was at the end stage, I had started my own company to help others navigate the dementia journey. I had also been ordained, become a certified senior advisor, and served as a hospice chaplain and bereavement counselor. I was a professional dementia instructor and sought-after speaker on dementia issues, aging, and grief. I felt that if anyone understood how to navigate her care it was me. I felt comfortable that my comrades in palliative care and I could manage her last weeks and months the right way. Below is the time line of her last 12 days.
Dec 15 – Mom falls and sustains a significant contusion to the left frontal and temporal regions of her head. CT scan reveals no serious damage. She is stitched up and released back to memory care. She does not complain of any pain and is not given pain medication by the ER.
Dec 16 – Mom is sleeping more, even less responsive than usual, and having more difficulty swallowing. She has been pocketing food over the last few weeks and is having some choking episodes, even with fluids. Doctor recommends another CT scan suspecting a slow bleed that was not seen at the ER and advises starting hospice. I refuse the CT scan since the doctor and I agree that surgery would not be a realistic option and that if the bleed exists, any discomfort could be managed through hospice. So hospice begins.
Dec 17 – Mom continues to be more and more unresponsive and has significant difficulty swallowing and increased choking. Improvement is not expected. The decision is made to withhold food and water and focus on comfort care. We hire 24- hour private care in addition to the memory care facility, hospice, and family. Mom has been in bed almost continuously since the fall. She is mostly nonverbal, does not express pain, and is not given any medication for comfort at this point.
Dec 19 – Mom becomes feverish and Tylenol suppositories are used to reduce her fever. Staff continues to suggest we bring her to the dining room and see if she would like to eat even though they are aware of the food and water restriction and hospice.
Dec 20 – Mom is still feverish, and I am told that Tylenol is being given PRN. At this point, I demand that it be given every four hours since Mom is aphasic and unable to communicate any discomfort. I know her back must be hurting from being in bed and she has a pained look on her face. I request additional comfort medication.
Dec 22 – I realize Mom is being given morphine PRN. I have to demand that she be given it every two hours. I am told that if she is given morphine regularly she will “be out of it.”
Dec 27 – Mom passes. Hospice has not visited in over four days.
Please don’t misunderstand me; I am very grateful to the memory care facility, the doctors, home care aides and hospice team that we worked with. I think they did their best to care for my mom and preserve her dignity. However, between what I witnessed with my own mother and what I see routinely with my clients, I would have to say when it comes to end of life and dementia, we can do better.
Because Mom was not verbal and was not expressing pain it was assumed by all of us (including me) that she was not in pain. As I look back now I know she must have been in some pain throughout those days until we got her on regularly scheduled Tylenol and morphine. Even then, the morphine was a very small dose and I am not sure it was taking away all her pain. I fear she may have suffered.
This inability to communicate makes managing palliative care far more difficult in dementia patients. Studies have shown that those with dementia receive one-third less pain medication than those without cognitive impairment. This is not because they have any less pain, but because they do not specifically indicate they have pain. The standard pain scale is of little use with advanced dementias. Often pain is expressed through emotions and behaviors. Anti-anxiety meds, antidepressants and antipsychotics are usually given in these instances often with only minor impact.
I saw this first hand when I had a client who was in the later stages of AD and was very aphasic. She was verbal but her speech was jumbled and usually incomprehensible. She was very combative and agitated especially in the mornings when staff tried to bathe her and often later in the day or evenings. She was being given all of the “antis” I listed above. When I looked at her medical records and personal history forms I noticed that she had had knee surgery a few years back and that she also had arthritis. She was not being given any medication for her arthritis or her knee. She did limp some but it was not as obvious a limp since her gait had changed due to the AD. I worked with the family and the doctor and asked if we could start a scheduled regimen of Tylenol or other non-narcotic pain medication and see if that improved her behaviors. I also suggested heat/ice therapy for her knee and elevation of that leg later in the day. Within days her agitation decreased significantly. The staff quickly realized that if they waited until her morning Tylenol had a chance to work, she was much less combative during bathing. After a couple of weeks the doctor was able to wean her off of many of the “antis” without the recurrence of the agitation. Her pain just needed to be managed. The PAINAD or Pain Assessment in Advanced Dementia Scale is a good tool to utilize and will help care providers better identify issues and changes.
Tools and Training
Inability to communicate is not the only hurdle to providing good palliative care. There is also a significant lack of dementia training in the care industry. Hospice and home care are not required to have dementia training and, depending on the State, some assisted living and memory care facilities are not required to have dementia training either. MDs and RNs do not get dementia training in medical school and nursing school. In addition, traditional assessments often don’t work with cognitively impaired persons.
The hurdles continue when we look at use of hospice and end-of-life care.
FAST Scale — not developed to be a prognostication tool. Only works for Alzheimer’s type dementia. There are many other dementias.
In one study, the FAST criteria could not be applied to approximately 41 percent of the persons with dementia because their disease had not progressed in the ordinal sequence of the scale.
Dementia clients admitted to hospice actually declined from 13 percent (2010) to 12.5 percent (2011) while hospice use overall is increasing.
US estimates of dementia of all types total 8 million people. In 2011, only 132,375 received hospice with diagnosis of dementia, a group that represents only 1.65 percent of dementia patients.
When hospice is not offered or used we see an increase in hospitalizations and invasive procedures which do not extend life or improve comfort.
Hospitalizations and Drastic Measures
When a person with dementia is hospitalized the new environment and routine, unfamiliar faces, combined with invasive procedures, and new medications often escalates fear, anxiety, and discomfort. Mortality rates increase 5.4 times for those with AD once they are admitted to the hospital.
In advanced stages of dementia we will often see infections and loss of the swallowing mechanism or unwillingness to eat. This will often lead to the use of feeding tubes, but artificial nutrition has not been shown to prolong life, prevent pneumonia, aspiration, or malnutrition. Nor does it improve comfort, and there is a 5 percent chance of morbidity and mortality with the procedure itself. Complications of the procedure can cause diarrhea, cramps, nausea, vomiting, and abdominal distention and can also result in the use of restraints. Relative dehydration may actually be adaptive, decreasing and thickening oral secretions to reduce aspiration. Studies estimate that the probability of death, with or without antibiotics, approaches 50 percent as a person advances and may not improve comfort.
Even if hospice is deemed appropriate and offered, often family members do not understand the benefits or see the need for this type of care and the patient usually can not participate in that decision.
However, in studies where families were aggressively educated about end of life and dementia, the “do not hospitalize” orders increased from 2-4 percent to 62 percent.
Are We Doing It Right?
Not completely. Not yet. So how do we get there? Dementia is different than other disease processes and to do it right requires care providers to think differently and be willing to change the care paradigm. There needs to be better dementia-specific tools and better training and education made available to care providers and families. Nationwide this would seem like a huge undertaking, but if we look at this company by company, facility by facility, maybe it is just a matter of a couple hours of specific training. Could it be that easy to turn the tables and do it right? With the staggering number of people expected to get dementia and the lack of a cure, I sure hope so.