My Dad Cannot Safely Swallow

Dear Beth,

My dad is a difficult case, and I was hoping to get your advice. He is 89 and just moved into a memory care facility. He is high functioning, still walking, has a strong appetite, knows who everyone is (even those not present, grandkids, etc.) and what’s going on. Definitely gets confused but can still hold a conversation and remembers things. 

The problem is he has failed multiple barium swallow tests to the point that the doctor at the facility has directed nothing by mouth. 

Have you seen a case like this? His advanced directive says that he does not want tube feeding, but he seems so healthy otherwise (except for the cases of aspiration pneumonia that have so far responded to antibiotics). We are wondering how long it will take for a relatively strong and physically healthy 89-year-old to die without food and water. 

And how uncomfortable will that be for him?

We are going to meet with a local hospice group as soon as possible, but his case seems to be unique (the facility has never seen this) and complicated, so I wanted to ask for your advice.

Thank you for any insight you may have for us at this heart-wrenching time. 

Good morning friend, 

I am sorry you are in this difficult situation with your dad. I have to say it is heartwarming to feel your care and concern as you advocate for him.

I cannot give medical advice, but I can tell you some things I do know from my 18 years of experience in hospice. I will ask questions along the way, but you don't have to respond back to me, they are just to help you inform your decision. 

I have definitely seen many cases like this, and it is incredibly uncomfortable for the family, maybe even more so than the hospice patient.

It sounds like your dad has cognitively clear days/moments/hours. Does he have decision-making capacity? Have you had a conversation with him about this? How does he feel about his inability to take in food or fluids?

He can follow the doctor’s NPO order (nothing by mouth) or not. I have taken care of many patients who cannot safely swallow, and we still give food if they request it. It is pretty hard to watch the aftermath though; the choking, the coughing, the potential for aspiration, and then pneumonia, which will likely be the eventual cause of his death. He can continue to eat and continue to go to the hospital for aspiration pneumonia and administration of antibiotics. It is possible each infection and journey to the hospital will lower his physical baseline and quality of life. And you will be at this crossroads again. But that is a possibility. Not making a decision is making a decision. 

One could die from choking, but I personally have never seen that happen. I did have a patient who was eating ice cream and choking at the same time. He told me if he died this way, so be it. “Tell my family I died happily. Cause of death: chocolate ice cream."

Because your dad is in a facility, the staff may not feel comfortable with the choking and the coughing. It is pretty awful to witness. 

As for the timeline: When patients are unable to safely eat or drink, they generally survive about two weeks. I have seen it happen quickly, in a matter of days. And slowly. I had one very weak, cancer-riddled patient survive 31 days (though he was getting multiple IV flushes daily, and I am certain these saline flushes prolonged his life — 10 mls at a time). I had another patient with Congestive Heart Failure survive about 42 days, but she did have small sips of water throughout the day. I also noticed orange-flavored TicTacs at her bedside and I wonder if they bought her some time. Who knew? My guess is your dad may survive about a month or longer because he is so robust and healthy and sounds like he has a strong will to live. 

As for the process: If he does not eat any food or fluids, he will feel thirsty and hungry initially. When people cannot eat, their body begins to burn fat (instead of carbs) which elevates ketones in the body. This process called ketosis diminishes the feeling of hunger after three to four days. Thirst will be an ongoing symptom to manage by excellent oral care, oral moisturizers, and swabbing the mouth with water. Dehydration (which is part of this process) may have an analgesic effect which reduces pain.

I love my food and plan my entire day around my meals, so I do know how hard this is for everyone. The best you can do is provide reassurance, distraction, great oral care, and moisten his mouth. We nourish our bodies with food; try to reframe it by nourishing him in other ways: games, life review, whatever television is meaningful to your dad, going through pictures, hand massages, walks in nature, sitting in the sun, enjoying the rain and watching whatever wildlife is outside his window. Get a bird feeder or squirrel feeder for his window. 

Over time, he will get weaker and will need more assistance with general hygiene, toileting, and walking. He will sleep more often. He may continue to feel thirsty and may become agitated or delirious (which can be alleviated with medications hospice will provide). He will need 24/7 care in the next few weeks. Hospice will provide medications like morphine if he does have any pain and Ativan for anxiety or Haldol for agitation or delirium. And eventually, he will sleep almost all of the time and then slip into a state of unconsciousness. You can read my blog on what happens 24-48 hours before death because that is a pretty typical death for most patients no matter the diagnosis. 

I am glad you summoned hospice because they will help you manage any physical symptoms and navigate this emotional time.

One of the reasons I work in hospice is because time becomes so precious and people rally in beautiful ways; patients and families have the opportunity for goodbyes, thank yous, and I love yous. My own father died suddenly in the backyard of an apartment building he owned. I never had that opportunity to tell him thank you and I love you before his heart unexpectedly stopped. Potentially this bitter news about your dad’s inability to swallow and eventual death is a gift. A gift you dont want, but a gift that could mitigate future regrets.

One resource that may be helpful: Compassion and Choices educates about end-of-life choices, and although your dad is definitely not choosing this, their info on VSED (Voluntarily Stopping Eating and Drinking) may be helpful information about the process of dying without food and fluids. I referenced it as I wrote this. 

I hope this is helpful. Thank you for reaching out.  

Blessings.