Thoughts on Decision-making for a Loved One Who Has Advanced Dementia
What type of medical care should a loved one with advanced Alzheimer's receive? That's an especially difficult question to answer when the caregiver is committed to doing everything he or she can to serve as an advocate.
Tara Parker-Pope of The New York Times addressed this quandary in "Treating Dementia, but Overlooking Its Physical Toll." The reporter noted that most people only think of dementia as a mental illness when, in fact, the disease also affects the body. I finally came to that realization in 2007 when I watched Mom participating in a modified barium swallow test. Eyes glued to the monitor, I could see in real time that Mom's coordination had been so impacted by Alzheimer's that she no longer had the muscular coordination necessary to swallow solid food.
From that point on, I realized that as Mom's physical struggles with Alzheimer's increased, my caregiver's decisions would become more loaded with life-and-death decisions. Even before she experienced swallowing troubles, I can remember fighting for Mom to go to the emergency room in 2006 when I found her lying in a stupor in her bed at the nursing home. Because we were described by the nurse as "active and involved" when she spoke to the doctor, he finally agreed to give the transport order. But did I make the right decision? Would it have been better to have let her die at that point?
Unfortunately, that quandary - what types of treatment should happen -- comes up regularly for caregivers who have a loved one with advanced dementia. Parker-Pope discussed a recently published study by Harvard researchers which followed 323 residents with end-stage dementia from 22 nursing homes. During the 18-month study period, more than half of the patients died.
The researchers found that "during the last three months of life, 41 percent of the patients received at least one ‘burdensome' treatment, like transport to the emergency room, hospitalization, feeding tubes or intravenous treatments. Advanced dementia patients are particularly prone to infections because of incontinence, risk of bedsores, a depressed immune response and inability to report symptoms," Parker-Pope wrote. "When the investigators looked more deeply into the reasons for treatment decisions, they discovered stark differences based on what family members knew about dementia. When they understood its progressive and terminal nature, only 27 percent of the patients received aggressive care. For family members who did not understand the disease, the figure was 73 percent." The study also found that pain control was often inadequate. One in four subjects were clearly suffering from pain; however, since patients often can no longer communicate, the other 75% might be experiencing pain.
The challenge that is illustrated by this study is ensuring that family members understand what really is going on with a loved one who has reached this stage. This honest and forthright conversation between the medical community and caregivers could help relieve some of the guilt that caregivers carry when they are not sure whether to advocate for rapid and comprehensive treatment for the loved one. I know that in our case, we never had that conversation with Mom's primary care physician; thus, we may have pushed for some treatments (including that emergency room visit) that otherwise wouldn't have happened. The primary care doctor (who also was the attending physician at Mom's nursing home) visited Mom when he was at the nursing home seeing other residents. He directly communicated with the nursing staff, but left us out of the loop. Our main source of information was the nursing staff, although we did go with Mom to her pulmonologist appointment and did hear directly from that doctor how bad Mom's lungs were. Nevertheless, we weren't informed about the decisions we were making or the ramifications of those decisions.
The lesson that I've learned in hindsight is that open and complete communication with the loved one's doctor is critical. If I had learned more about Mom's real condition, I might have changed my perspective and also how I would have advocated for Mom. I never would have wanted Mom in pain. I don't think she suffered, but I understand now that I may have prolonged her life in a way that she didn't desire. I hope other caregivers are able to make more informed decisions based on this information that are in accordance with the loved one's desires.