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A family conflict: "Should we let Nature take its course?"
I am the oldest child of three. Starting in her early eighties, our widowed mother suffered from severe, progressive dementia. Two years ago, we had to place her in a skilled nursing home. For a year, she had not been able to recognize anyone or communicate. One day after I visited her, her doctor asked to speak to me. He stated we needed to talk about her future because eventually, she would no longer be capable of feeding herself and sometime after that, she would lose the physical ability to swallow. He asked me if my mother had discussed – either with her previous doctor or with me – what level of feeding assistance she would want, or if she had given any other indication of how long she wanted her existence to be prolonged.
I explained that my mother had consistently refused to talk about such things. She called them “morbid.” The doctor nodded and said, “Only 1 in 9 patients talk with their doctors about their end-of-life wishes. I suggest you consult with an elder-care attorney. Here are three names. Come back after you speak to one. Unfortunately, these decisions won’t go away. You and your brother and sister will have to make them.”
After the lawyer heard the story, he advised me that there was no basis, let alone clear and convincing evidence, to make a medical decision on what my mother would have decided for herself, which he called substituted judgment. The alternative was to obtain a consensus from my sister and brother on what we thought was in her best interest. Best interest is the alternative to substituted judgment. The principle was, as her closest relatives, we knew her best and should therefore be considered her legal surrogates to speak for her. But first, we must make sure we all agreed on what would be best for our mother. Otherwise, if we did nothing, she would have to accept society’s default treatment plan, which is to do everything possible to prolong her life.
I asked my sister and brother to meet me for a difficult discussion. I began by noting how sad it was for us to lose Mom’s personality and humanity, even though she still looked like she was here. I reviewed my discussions with the doctor and the attorney. Then I shared how these discussions made me feel obligated to struggle with two difficult decisions about mother’s future care. I said, “First, when she can no longer swallow, we must decide whether or not to offer her a feeding tube. Most dementia patients do not understand the need for tubes so they require physical restraints to prevent pulling them out. The restraints are uncomfortable, cause further loss of dignity, and increase the risk of lethal infections from bedsores. Even with tubes, Mom might regurgitate and aspirate, which can lead to a lethal bout of pneumonia.”
After I assured my brother and sister that the doctor would provide comfort care to reduce Mom’s sensation of thirst as Nature took its course, and that her life would end peacefully, they both agreed to refuse tube-feeding on Mom’s behalf when she lost the ability to swallow.
I feared the second decision would be far more difficult, so I planned how to present it. “You know how confused Mom has been recently. Her personality and humanity has been gone for a year and since her dementia is progressive, there is no chance they will ever return. More and more often, she does not know what to do with her spoon and straw. Now, I must ask you the hardest question I have ever asked in my whole life. Why wait? Why wait to withdraw food and fluid from Mom until she can no longer swallow?”
My brother and sister just stared at me, their facial expressions pleading for a fuller explanation. Here is what I shared. “I’ve been thinking deeply about this. I feel it would be both right and kind to refuse food and fluid on behalf of Mom when she has lost the understanding of how to eat and drink. I think that would be best for her.” I purposely used the word “best” since I anticipated I would need to explain the principle of “best interest.”
My sister asked how can we be sure that Mom no longer understands how to eat and drink?” I explained what the doctor said. “We tell the nursing assistants to continue to place food and water on her table, but not to raise the spoon to her mouth, not to put the straw between her lips, and not to demonstrate how to use the spoon and straw. Then we wait and observe. If Mom just sits in front of the food and water for a period of time without eating or drinking, we can be certain that her refusal is not due to her temporary lack of thirst or hunger. Then we can conclude she no longer understands how to eat and drink. At that point, we can ask the staff to stop offering her further food and water so that her disease of dementia can take its natural course. How long should we observe? The doctor suggested one full day, maybe two.”
My sister and brother wanted more information. So after letting that information sink in for a moment I added, “I feel this plan does NOT deliberately hasten Mom’s dying. It just lets her to die Naturally from the consequences of her mental disease. It’s similar to letting her die from the consequences of her physical disease, when she can no longer swallow. Spoon-feeding could be considered forced feeding and it would NOT respect Mom’s dignity OR be in her best interest because it would only prolong her indignity without providing any benefit.”
Simultaneously, my brother nodded his head to agree as my sister exploded. “How can you even suggest we abandon the very person who brought us into this world? I know it takes the staff four hours to feed her, but I don’t care. As long as Mom is alive, regardless of the condition of her mind and body, she deserves to be treated as a human being with all the ordinary care that all living humans deserve.” I was about to reply as my sister stood up, her voice now louder. “Providing nourishment is a form of care owed to all helpless people. It’s how we express love and concern. I just can’t stand the thought of letting our own mother starve to death.”
I tried to be calm as I said, “It’s not starvation but dehydration that would cause her to die. Spoon-feeding sounds nurturing, but it really is not. This is how people used to die. Refusing tube-feeding when Mom has lost the physical ability to swallow is similar to refusing spoon-feeding when she has lost the mental ability to know what to do with a spoon and a straw.”
My sister sat down as she shook her head. “I’m not convinced.”
I tried again. “Our society is making a huge mistake by presuming – unless otherwise specified – that patients want to prolong their lives at any cost, regardless of their ability to function. I feel that if Mom could speak for herself, this is exactly what she would want. That’s why I feel so strongly that refusal of food and fluid on her behalf would be in her best interest.”
My sister glared at me in silence so I invoked my backup plan. I called Mom’s doctor on a speaker phone. He cited an AARP survey that showed that almost 9 out of 10 people over 50 felt that total physical dependency would be worse than death, and in situations like Mom’s, 8 out of 10 felt it would be important to be off machines that extend life. Many other surveys revealed that the overwhelming majority of Americans indicated they would not want to prolong their lives if they became severely demented. I asked the doctor if he thought it would be in his patient’s best interest to not continue spoon-feeding. He clearly said yes.
But this strategy didn’t work as my sister countered, “How can we know for sure whether Mom is among those one or two out of ten?” For the next two hours, we went around and around in circles. Finally, I gave up. The next morning, I called the doctor and said, “We all agreed to withhold tube-feeding when she can no longer swallow. But as long as she can swallow, I guess you’ll have to continue Mom’s spoon-feeding.”
My mother lived another eight months. The huge financial cost was just part of it. Worse was the enormous emotional drain as I was forced to witness the staff fighting with Mom during spoon-feeding. As expected, Mom never again interacted meaningfully with her environment or the people she used to recognize and love.
When Mom did finally lose her ability to swallow, her doctor ordered the staff to stop spoon-feeding since it was too great a risk. Two days later, she developed a fever but her doctor administered no antibiotics or hydration. Finally, Nature took its course. Mom died three days later.
I wish I could erase from my memory, the sight of my mother lying in her bed as her muscles became more contracted. She hardly moved from the fetal position except for the many seizures during her last two months. When I recall those seven months, I ask, What was the point? My brother agrees. But I won’t discuss my feelings with my sister.
Two positive things emerged from my mother’s awful, prolonged ordeal. It motivated me to write my own Advance Directive in a clear and convincing way. I designated my brother as my agent and I gave him the authority to refuse food and fluid on my behalf. I also listed alternates if my brother cannot serve as my agent. In addition, I specifically put it writing that my sister should never serve as my agent. My brother knows this, but my sister does not. She will only discover it if my brother and all alternates are not available. I don’t want her to feel badly, but if she does find out, she’ll know why I made that choice.