Called to the hospital to admit an 86-year-old woman who had suffered a stroke, I found a distraught son of Indian descent. He and his mother had emigrated from India. She had been unresponsive since her stroke and had gone several days without food, although she had been getting fluids and electrolytes through an IV. The son, worried she was starving to death, had been offered a tube feeding for his mother and he was conflicted whether to have it placed. He wanted her to get better, but wasn’t sure if the tube feeding would give her that chance.
So I asked him, “What has the doctor told you about your mother’s condition?”
He said the doctor didn’t know whether she would wake up or not, but that every day that went by made it less likely. I then asked, “What is your goal for you mother at this time?”
He said, “Well, if she will wake up and go back to how she was before, I want to give her that chance. I think the tube feeding would sustain her until she can get better.”
“And what has the doctor said about that happening?”
He said, “The doctor said if she wakes up she would need a lot of therapy.”
“And how was your mother doing before the stroke?” He described an elderly woman who had more and more difficulty getting around. She’d had falls and was losing weight. He had been working “on building her up” but she was weak and wouldn’t eat enough.
I said, “It sounds like your mother was not doing very well even before the stroke. She was kind of in a downward spiral. Do you think she would want to go back to that, but, possibly even more debilitated?”
He was conflicted. He explained that if there was a chance she could get better he wanted to give that to her.
This loving son needed to understand all of the issues surrounding tube feedings, or artificial nutrition so he could make a good decision for his mother. But first of all, we needed to explore what his mother had indicated she would want in such a situation. So I asked him, “Does your mother have an advanced directive or a living will?”
He said, “No, she did not.”
I asked, “Did you ever have a conversation with her about what she might want done in this situation? Is there anything you can remember about what she would want?”
He thought and said she never indicated anything to him about this. In this circumstance, it is up to the son to make the best decision for his mother; always keeping in mind his first responsibility is to do what she would have wanted.
The Hospice and Palliative Nurses Association (HPNA) has a position paper on end of life artificial nutrition and hydration, which is helpful. http://www.hpna.org/pdf/Artifical_Nutrition_and_Hydration_PDF.pdf
The paper acknowledges the reasons families and patients would want artificial nutrition and encourages an individualized decision. In this situation the goal would be to sustain the patient until her body could heal itself and she could return to eating.
However, the woman’s health was not good when she had the stroke. She was weak, not walking much, not wanting to eat and losing weight. Her son agreed that her quality of life was not good. Now she was unconscious for five days after her stroke. If she woke up again, she would face the left side of her body being paralyzed. She likely wouldn’t be able to swallow well, putting her at risk for aspiration pneumonia, and she may not be able to communicate. I explained to her son that if she was able to complete physical, speech and occupational therapy that she likely would not ever return to the condition she was in before the stroke.
I also explained the problems with artificial nutrition. Aspiration of the formula into the lungs can occur causing pneumonia. Sometimes people have diarrhea due to not tolerating the formula. There is risk of the body getting too much fluid at a time when the kidneys are not functioning well, thereby not excreting the extra fluid, causing extra strain on the heart and the breathing. This can make the patient uncomfortable.
The son, a good son, concerned about his mother’s comfort wants what is best for his mother. He is genuinely concerned about her starving. He doesn’t want her to be uncomfortable because of hunger.
I can remember when I was a young student learning that a person can go 2-3 days without water and 4-5 days without food. In hospice care it is not unusual to have a person, debilitated by their disease, stop eating and drinking and still live for 2-3 weeks. A person who takes fluids, but not food can go longer, months even without nutrition. Nearly everyone who dies in hospice care, no matter what their age or their disease process, stops eating and drinking in their last few days. We always offer food and water, but they refuse and if able, they tell us they don’t want it, they are not hungry. It seems to be nature’s way of saying; this body doesn’t need food anymore.
We also know that if we give fluids artificially in the last few days of life, when the organs are shutting down that fluid can be retained by the body causing swelling in the extremities, and excess water in the lungs and around the heart making our patient very uncomfortable as they gasp for air and struggle to move heavy swollen limbs around.
The concern that a person is starving to death probably comes back to our way of nurturing those we love. We feed them. When we can’t feed them we feel at a loss as to how to nurture. Very few people starve to death in the United States. People die of cancer, heart disease, stroke…but they don’t starve. Just because they don’t eat in their last days or weeks of life doesn’t mean they are dying of starvation. They are dying of their disease process. Nurturing can be achieved in other ways; a quiet presence, a hand squeeze, a quiet conversation, reading together.
I was aware during our conversation of possible cultural differences I did not understand surrounding this family and their decisions. When encountering a different cultural milieu, sometimes I am aware of what particular customs or beliefs are important in that culture, but even when I think I know, I always like to ask. Just as in the United States, different families have different cultural beliefs and customs, so do individuals in other cultures. So I asked the son if there was anything in his mother’s belief system that would indicate to him what he should do. He said, no, nothing.
He paused for a minute with a pained look on his face. He clearly wanted to do what was best for his mother but was reluctant to let her go. She wasn’t thriving before the stroke and he had been trying to improve her health by giving her nutritious food and trying to get her to eat. He had been trying to strengthen her, by walking and guarding her against falling. He knew she wasn’t doing well, but he’d hoped he could turn that around. Now she was worse, much worse than before. In that moment he faced the reality of his mother’s condition.
When the son was informed of all the issues, and when his questions were all answered, he was decided. He would not use a tube feeding. He had tears in his eyes as he realized his mother was dying. The time had come to stop trying to help her get better because that effort was futile and perhaps would even cause her more discomfort. It was time to sit by her side, hold her hand and tell her what a wonderful mother she had been.