Moving from an inability to swallow to end-of-life decisions
How I faced tough choices during my father's late-stage Huntington's disease
Note: This column describes the experiences of the author’s father with tetrabenazine (often known by its brand name, Xenazine). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
My dad, who had Huntington’s disease, was moved to a nursing home when his ability to swallow deteriorated to the point where he could choke on just water. Since he had gaps between care visits, we in his family decided his trouble with swallowing, known as dysphagia, was too dangerous to let him live by himself.
At the nursing home, he was put on a pureed diet with thickened fluids. Meanwhile, his speech had deteriorated as well, to the point where he could say only one word, and even that was infrequent.
A year later, he had a sudden and complete loss of his ability to swallow, leaving food and drink in his mouth. A wet, gurgling sound came from his throat, and he didn’t appear to be swallowing his own saliva.
The journey with feeding tubes
Dad was taken to the hospital, and we feared the worst. Because he was severely dehydrated, hospital staff had difficulty finding a vein for his central line, which would deliver him fluids. Then Dad pulled a line out. Eventually, and thankfully, one was fixed and secured.
We tried him on some pureed desserts, with no luck. Hospital staff tried to use a nasogastric feeding tube, which enters through the nose and goes from there toward the stomach, but Dad struggled to tolerate it and kept removing it.
Dad told me, “I need medical help.” The mental and physical strength it must have taken for him to say that sentence still blows my mind.
I then had a meeting with a speech and language therapist, who explained that Dad could have a percutaneous endoscopic gastrostomy (better known as PEG) tube, which goes directly into the stomach. The procedure for it would be relatively minor, but Dad was weak. The incision site would be prone to infection, and Dad might pull the tube or remove it, as with the nasogastric tube.
The therapist said the tube would extend Dad’s life past its natural end. That meant we’d see the disease progress past its natural end, too, as he experienced the worst symptoms possible.
I spoke to the hospital ward sister and asked her to check with a neurologist. Was there anything else we could do? Anything we were missing?
The neurologist suggested that the dosage of Dad’s medication, tetrabenazine (often known by its brand name, Xenazine), could be causing the swallowing problem. It’d been prescribed to manage his jerky movements, or chorea, but those had eased somewhat. The neurologist ordered the reduced dose, saying that at his late stage of the disease, the tetrabenazine could’ve been causing the muscles in his throat to stiffen too much.
Making the hard decision
A multidisciplinary team included me in a meeting to determine what was best for Dad. We discussed his removal of the nasogastric feeding tubes, which the team believed was a sign that he didn’t want this type of intervention. Unfortunately, Dad hadn’t written a living will or recorded his wishes for end-of-life care. Therefore, they had no other guidance.
They asked my opinion, which I found incredibly difficult, especially as Dad had never expressed his wishes to me. But I knew from our discussions of others that he’d never want to live in a vegetative state. Still, deciding his fate felt like an impossibly heavy burden.
I weighed the information and concluded that a feeding tube wasn’t in Dad’s best interest. My brother, Gavin, and my mother, however, would’ve liked him to have such a tube. Still, the team decided not to proceed with it.
But I’d underestimated Dad. Slowly, day by day, he began to eat again, and after a week he was well enough to leave the hospital and return to his nursing home.
I couldn’t believe how strong and resilient he was. Though he’s since passed away, he’d shown such a powerful and determined will to live and stay with his family for a while longer.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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Comments
Lyn Carlson
Repeatedly pulling out tubes necessary for sustaining life seems to me to be a clear message of the desire to pursue end-of-life measures. The patient alone should have been allowed to make his own decision about his life.
Rebecca Field
Dear Lyn, yes I think that was the feeling of the medical staff treating dad at the time. Very upsetting and difficult times, but ultimately it should still be personal choice. Difficult if that cannot be verbally communicated and there isn't a living will.