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My father is 93 and started gagging on his food in the last few weeks. He had previous problems with acid reflux, hiatal hernia, but was tolerating food very well prior to this time. He also has congestive heart failure but has been doing well. He developed a UTI and the gagging started around the same time as the UTI. He's recovered from the UTI but the gagging continues. I just have a bad feeling about this. If the problem turns out to be cancer I don't see any value in telling him. He has shared with me that he is very afraid of dying. Has anyone else faced this dilemma and how did you handle it?

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The ER found a tumor in my Dad’s head that looked like it was possibly cancer. They said nothing to me or my Dad. His PCP called me and told me she felt it was best not to put him through all the testing to see if it was indeed cancer and if it was going through all that radiation and chemo. She said he is 80 years old just let him live out his life. I asked her ‘so don’t tell him?’ And she confirm that is correct. I still am not a peace with it. I see both sides of it. My 3 older sisters out voted me and said not to say anything to him. It is really really hard to know what is right and wrong for an 80 year old. He is about to turn 81.
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Dosmo13 Nov 2020
WOW. Just not tell him? Did she say why she felt it not best? You know your dad better than the PCP.
She gave you the facts about the (possible or probable) diagnosis. That's her responsibility. But the judgement call will be up to you and your sisters.
Is he the kind that would want to know regardless? Or is he one who would find the possible diagnosis and treatment too difficult to face? Perhaps he is too frail at 81 to even decide rationally.
In any case, since you are not at peace about it, you need to settle it in your own mind and heart. Sounds like you might need more discussion with the sisters You know him better than a stranger. Consider, too, that he might not even be able to survive the treatment. Perhaps that's what the doctor was thinking. Cancer treatment can be rough at any age. What a difficult heart wrenching decision for you to make. My heart goes out to you.
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It sounds like you want to contue your care for him. Call the Dr. he can order a person to determine what he can swallow. If he has throat cancer ...put him in his Dr's hands for treatment or pureed and liquid foods. The Dr. can have his throat scoped and see what is going on.
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Regarding telling him or not telling him
1) What makes you think he has cancer?
2) You should have this discussion with his Doctor
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No mention of dementia, but swallowing problems can show up for many reasons. Recently OT/PT asked about doing a swallowing test (they were brought in after mom, 97, had a stroke, to try to strengthen her right side to aide in feeding herself and pivoting with assistance. Staff thought she developed some minor issues with swallowing before the stroke, but it wasn't often so we didn't pursue it.

Post stroke we had to discontinued one OTC eye vitamin, as she was usually spitting it out anyway and it isn't a "critical" medication. She's now reported having issues with one of her BP meds. For now the plan is monitor BP and whether she takes the med or not - if BP remains relatively stable, let it ride. If it goes up, we'll need to figure out an alternative.

Anyway, swallowing tests can sometimes pin-point the cause. Sometimes it might not, but can determine ways to prepare foods that won't cause gagging and choking. As with others, cancer wouldn't be #1 on my list, but I'm also not a doctor! Leave Dx to them! Whatever is causing the problem, telling him depends a lot on his cognitive ability. If he doesn't have dementia, it's his body, he has every right to know what the test results are and should be consulted as to how he wants to proceed. If he does have dementia, telling him may become an ordeal if he can't remember you told him, so you'd have to put him through that pain over and over. In that case, I wouldn't tell him. Anything else, whether he has dementia or not, you'll have to work with him for whatever intervention is decided on.
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Imho, firstly you must get a diagnosis from his physician. Prayers sent.
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Has he been to a doctor yet about the gagging? if so, are you allowed to know the results?  maybe it won't be as bad as you think so don't fret yet.  IF it would be cancer I would hope that the doctors can tell you how to help your father eat better with pureed foods.  I wish you luck......but sometimes in dementia patients they forget how to swallow so maybe a therapist can work with him.  but you don't say if he has dementia.  good luck
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Hi, I used to take care a 95 woman who just passed away a month ago.. she was always telling me that she was scared and didn't want to die... so what I used to tell her was this:
"We're all going to die one day, so we should be grateful for everything we already had during our lives and try to find peace, prayer meditation can help to relax. " Also think that death is a release of all our problems in this world"
I think that the place all the good people go when they die is a wonderful and happy place because nobody has come back from there. 💞 Much love and Blessings 🛐
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He was clear with you that he's afraid of dying, so I wouldn't share the info. A cancer diagnosis, if you've never had one, is total panic to begin with and it occupies every minute of your time with thoughts about it. That's just at diagnosis and while you're waiting to get an appointment for the next phase.

To back it up a bit, tell dr prior to first consult that dad is very afraid of dying so if he wants any tests done - then leave the word cancer out of it for now. If dr thinks it could be cancer or wants to rule it out, they set you up with appt that won't happen for a week or so. THAT period of time starts the whirlwind of thoughts, so no point in being a nervous wreck before the test. You finally get to the appointment for xray, mri, etc and even if you ask what the tech thinks, they won't tell you. So now you play the waiting game again for someone to review test and another appointment with the referring doctor. I would NOT tell him why he is having tests. There's always the chance it's not cancer, so leave it be.
If it turns out to be cancer, you can have the initial conversation with the doctor to find out what a treatment plan would be and how hard it would be on him - or if dr even recommends treatment considering other health issues. That's when you can talk to dad to find out how he wants to proceed. It's no necessary to use the word cancer in the discussion either. You could say, there is a growth near your 'whatever' and doctor thinks some meds (leave out chemo) would help. (Actually some chemo is giving by pill, not )always IV. Or doctor thinks a little radiation would help.
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Dysphagia is a common gagging problem in the elderly. Do some research on it. The elderly man I care re gently developed this problem and we started blending his food to a puree consistency. It has helped immensely! Of course we spoke with his doctor and was checked go make sure Dyson agua was the problem. It is not likely cancer so get him checked. Unchecked he can aspirate develop pneumonia and could die from that. Best to you both.
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He is thinking about dying. Whether or not he has cancer (quite likely he doesn't, but get him checked anyway), he knows that at 93 he hasn't much longer to live. He won't be surprised, no matter the diagnosis. His fear of death is understandable. Death is not an easy subject to talk about, so the fact that he mentioned it makes it appear that he might like to express his fears somehow, to someone. Is it the fear that dying will be painful? Or the fear of what an afterlife might be?
I don't think it would be fair to ignore this fear that he shared since it is obviously bothering him. Does he have some past religious affiliation? Do you have a clergyman that you trust... or even a lay person who might be comfortable discussing death? If he is admitted to the hospital,a chaplain accustomed to helping terminal patients will be available to him. No matter his diagnosis, I hope you will be able to, somehow, address this concern of his also.
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Please have your father evaluated by a doctor for his "gagging problem". Many things can cause this: cancer, mild stroke, dementia... His doctor may require him to have a swallowing evaluation which will determine how well he swallows different thicknesses of food as well as other eating problems. The tech can give you instructions on how to adjust meals and eating techniques to prevent gagging based on the results of the evaluation..
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I wonder why you immediately jump to cancer from gagging. Deal with the gagging issue first, it's not at all uncommon in the elderly.

Cancer, at 93? Might be a blessing in disguise. I had cancer and am in remission. The tx was beyond horrible and I wouldn't do it again for anything or anyone.

SOMETHING is going to get everyone. For all the times I went in for testing thinking I had cancer, I only really had it the one time. Not that that wasn't enough--I just think that should not be your first go-to.

Mush more likely it's a symptom of dry mouth, gag reflex being too strong--don't look for trouble!
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JulieAnnB,
Does Dad have dementia?

Depending on his memory, he may not remember the diagnosis (even a cancer diagnosis) anyway.

IMO, he has the right to know about any condition he might have.

Would'nt it be better to hear it gently from you, as opposed to a slip of the tongue from someone else.

Sending prayers that it's not cancer!!
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since he has reflux, try a wedge to raise his head while sleeping. Mom has terrible coughing fits, could find no relief for years until she tried wedge, a life saver!
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Do not loose hope! Even if it would turn out to be cancer I would find out what can be done to fight it before speaking to him. Always the first question after a diagnosis is to find out what treatment is available. There has recently been some huge breakthrough's in cancer research. They believe they have found a cure for some types of cancer.
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I remember reading about this one caregiver's blog after his mom died it took three years for him to recover and get his life back on track.

I never forgot that.
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Hopefully it's not cancer. Make sure you also take care of the acid reflux, which can cause gagging from mucus accumulation and coughing. Talk to his doctor about it. You might also want to consult a hospice worker if it turns out to be cancer, and get him into hospice (often can be hospice at home). All the best to you.
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More to the point, are YOU prepared for it. Do estate planning, pre-arranged funeral, DPOA, Wills and Executor (DPOA no longer is valid after death), and share bank accounts if he is still able to sign. He's going to eventually die of something, and the business end of death is HORRENDOUS. If you financially depend on him it's going to be very hard on you. You need to start thinking about how are you going to make a living. If you are retired, you are lucky.

No matter what you are going through--the bills will keep on coming in relentlessly. That is where the term "life goes on" comes from. The bills.

I am so thankful I have no children. I would never want them to go through what I went through after my folks died. When mom died it nearly destroyed me emotionally, and the financial impact was also horrendous. After one year, I'm still suffering emotionally, but I come to terms with it and re-established my life. The business of death--even with estate planning--was extremely difficult for me. I can't imagine how bad it would have been if I didn't do that. It was awful.

If you have siblings you will find out just how dirty they can get to get a piece of the money pie.
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As others have noted, first he would have to be diagnosed with cancer. IF he is, let me share my experience. I was a home health RN assigned to admit a man with a diagnosis of untreatable cancer. All over the admission paperwork was written "patient does not know, family does not want him told". Yikes. My first couple of visits, the wife hovered over me I felt was to be sure I didn't say anything. After developing a relationship, I encouraged her to go out for a walk while I was there. On that day, he turned to me and said, "I know I have cancer, they just don't want to talk about it". Trust me, patients know. Then he turned to me and said, "Am I going to die"? I knew what answer he wanted but told him, "yes". As he startled, I told him we ALL die. The difference is that none of us know when or usually how. As I shared with him I could be hit by a bus leaving him and die. It was important to live every moment and time for the family to open up together. He agreed. Next visit I said to the wife, "he knows he has cancer, you know. HE told me. Now it's time for you both to share and love and open up." They did and found peace and acceptance and of course sadness.
IF he gets a cancer diagnosis that is deemed terminal, get Hospice in ASAP. They are NOT about giving up but living every day to the fullest. The staff are well experienced in how to help those with the fear of dying. Do get them in early and not wait. You do NOT need a doctor's order or permission to have them do a home visit for information.
Best of all peace and golden light to you all.
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Why expect Zebras? (old saying when searching for a diagnosis, If you hear hoofbeats think horses not zebras)
Gagging or choking can be caused by any number of things.
You do not mention anything in your profile about his medical history.
The choking or gagging could be because he is not swallowing properly, it could be because of acid, it could be inflamed tonsils, ....
Make an appointment with his doctor, if he was seen by a Gastroenterologist make the appointment with that doctor since they would have previous information about his health.
IF your dad has not been diagnosed with any form of Dementia then YES the diagnosis should be shared with him and he should be involved in his care plan. IF he has dementia then there would be no need to share the diagnosis IF you do not plan on treating it and just contact Hospice.
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I think I'd weigh up the pros and cons of sharing a cancer diagnosis after my loved one had actually been given one. Aren't you rather crossing a bridge before you've come to it?

What investigations are being ordered?
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Lets's not jump ahead. That is a lot to assume. The fact is that of all the things that could be wrong here, Cancer is the most unlikely of them. Swallow problems are common in many dementias and just in aging.
What is needed here is a good swallow eval by OT. Contact the doctor.
As for myself, as a nurse, I believe hiding the truth from a patient, from ANY patient, is a terrible mistake.
Please don't be afraid to discuss the "dying" remark with Dad. Ask him for details about why he feels this way. Ask him if it is his heart problems, or his swallow that is of concern. The fact is that with CHF your father has a weakening heart. You know him best and what he wants to hear most, but denying what he is going through may NOT be reassuring.
I would say "Dad, why do you think you are dying? What is worrying you? You have some CHF and that means your heart isn't as good a pump as it was when you were young, so handling fluids in your lungs and in your legs might get to be a problem. You wouldn't expect your heart to be the same as when you were 29 years old, right? What bothers and worries you the most right now? Can you talk to me about it? Is there something we can do? Because we can see the doc about things of concern and talk about them."
Some people are more afraid of death than others. It is a lot for anyone to absorb, right? But he knows where he is in living. Let him talk with you about all this.
I had patients who waited until their family left the room to speak the truth with ME, and that's kind of sad.
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Countrymouse Nov 2020
I agree with you 100% about the value of truthfulness. What the patient then wants to do about talking things through - and with whom - must remain his choice, as you say.

We have a client who was diagnosed with inoperable prostate cancer in March. His wife went with him to the consultation. Since then, he has refused to discuss the matter in any way whatsoever with anybody - our call instructions are that he is not aware of how ill he is* and we are not to talk about the disease.

[*Of course he IS aware - he can't very well have missed that his body is wasted and the cancer is erupting through his left groin. What they mean is that he declines to acknowledge it and we must respect his right to do so.]
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My dad had a similar problem, and the doctor gave him nitroglycerin tablets to use when it happened. He was just having spasms in his esophagus. The pills cured him.

Easy peasy.

Take him to the doctor.
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My mother had CHF, as they increased her diuretics she had trouble swallowing food; everything was very dry to her, even things I cooked in a crock pot.
Her cardiologist told me diuretics can cause dry mouth, which can lead to trouble swallowing.
I agree with calling his doctor, there might be something they can give him to mitigate the symptoms.
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JulieAnn,
Hoping you will have your father tested. And get the advice of a physician.
People who decide to get palliative care or forego treatment are first dealing
with the facts, using medical science instead of relying on our own feelings about another's health. This is not said to hurt your feelings. Of course you are worried for your father. Jumping to conclusions will make it worse for you and him. imo.

And I do not want you to create more worry for yourself. You said:  "I just have a bad feeling about this. If the problem turns out to be cancer I don't see any value in telling him." That is not how cancer is diagnosed. And your father has rights.

It is much too soon to be considering these things. I know this because my loved one was told "it may be cancer" and his daughter went around crying wolf for the next 6 years: "My father is dying of cancer". He did not have cancer.

Funkygrandma gave another possibility. Just wait up, more answers will come, and I hope people are kind and understanding to you. Now pull yourself together, wash your face, and take care of business, despite the challenges.
💞🍵💞
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I agree. Call his doctor and get him in to check this out.
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I don't think I am understanding why you have automatically jumped to the conclusion that it must be cancer. He might just be having trouble swallowing his food, and that is causing him to gag. You can take him to the Dr where they can perform a swallowing test to see if in fact that is the issue. In the mean time, I would only give him really soft or pureed foods, and drinks that are thickened. My husband ended up with aspiration pneumonia, after he starting gagging on his food, and I was told that it was caused by his vascular dementia. That his brain wasn't communicating any more with his throat, telling it to close as needed. He almost died because of that, and I had to keep him on thickened drinks and soft foods for the rest of his life. Wishing you and your father the best.
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JulieAnnB Nov 2020
Thanks to all of you for responding. It actually helps me to look at the worst that can happen and make a plan for that, then anything less is easier to deal with. And it helps to talk to others who are or have been going through this journey. You all have given me great advice.
Anyways it’s time to call the doctor and get some answers. On to the next step, right? Thanks for listening and God bless you all.
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