My father was placed on hospice 3 months ago because he has congestive heart failure (2 arteries 80 % blocked and 1 artery is 100% blocked) he was too weak to have a heart catheterization. And because of years of mismanaged diet his diabetic kidneys were in ESRF. (He left the hospital with a kidney function at 12.) He has high blood pressure, as well as mesothelioma, COPD, and sleep apnea. He is now totally bed ridden,

He is on hospice for his heart and has a DNR. He is not on dialysis. My mother and I both care for my father but we do not agree with one another on any of his care. My father has expressed to me that he does not want to die. He has told me that he wants to beat this. I have promised to help him. So now I am butting heads with both my mother as well as his hospice. The issue I’m looking for clarification on is the attitude his hospice has. He is not on dialysis because his hospice tells us that is preventative and they do not cover that. He is on hospice because of his heart. We are unable to afford medical transportation to the dialysis center. My argument is simply that with the exception of his cancer, all other issues are related. His diabetes has caused his heart issue. They now cover his insulin but still will not budge on the transport to an from dialysis. I have managed to raise his kidney function to 19 now, and am fairly certain that with diet we may be able to get him strong enough to have the surgery and may not need the dialysis.

His most recent challenge is he has a bowel blockage. We know it’s a bowel blockage because this is nothing new to us. In the past year he has been hospitalized at least 11 times needing his stomachs pumped because of the blockages. The most recent trip was 4 days ago. He hadn’t had a BM for 4 days and woke up in considerable pain and vomiting. Because hospice told us to call them rather than an ambulance, my mom called hospice. The nurse came and after about 30 minutes of trying to get him to hold down Myralax she called the ambulance. They transported him to ER and followed them to hospital. She made it there before we did. When we got to the hospital we immediately noticed they had not treated his pain, and had not done the EKG. No tube down his throat. Nothing that they normally do. I had to insist his pain be treated, and insist they do the EKG. ( his BP reading was 218/98) after a couple hours the dr came in and told my mom he was being discharged. I questioned why she said he did not have a bowel blockage he was only constipated. Despite having to give him a shot to lower his BP and Dilaudid to manage the pain. They said he does have a UTI and sent him home with antibiotics. 3 days later hospital called to say they prescribed the wrong kind of meds and to pick the correct kind at Walgreens (they had called the right stuff in)

Now he is going on the 8th day no BM. He eats 3 times a day but nothing’s coming out. Hospice called this morning and told mom to buy some suppositories. Said she would administer it when she comes. He gets 2 stool softners a day on top of myralax everyday. He just drank a ton of magnesium stuff none of which are producing anything more than a very small amount of gas.

I am furious because from where I’m standing it appears that every single person on his team is totally incompetent. I happen to think that 8 days without a BM is an emergency. My mom believes hospice is doing good because they are trying to be so helpful with the follow up calls and going to the store to buy what he needs out of pocket. I pointed out to her that Dad is money to them. Even Ted Bundy smiled to gain his victims trust. To me that means nothing. I could be wrong. I’ve made it clear I don’t trust their opinions. Simply because we’ve literally had to beg them for everything he has. Am I expecting too much? Too close to this to be objective? I feel like I’m the only one who wants him to live except for him. But it could be stress. Would appreciate a fresh set of eyes.

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Is there a possibility that he is telling you he wants to "beat this" only because he knows this is what you want to hear? It may be time better spent to accept the reality of your dad's multiple problems and let him know that you will be ok after he passes, as this may be why he is saying this. If you feel that this hospice is acting incorrectly, call others and see if any of them might be a better fit.
Helpful Answer (19)

Is your father not competent? I was just wondering as he can stop hospice anytime he wishes. If your father wants to live (other than coronary artery blockages)why is he on hospice? Do you know what his cardiac ejection fraction is? Is he on oxygen?

What is the cause of his chronic constipation? Is cancer causing bowel obstruction? If that’s the case they can perform a colostomy.

As for dialysis, Medicare/Medicaid does pay for transportation to and from. Usually a person is started on dialysis if their kidney function is less than 15 (GFR).

Something is missing here in that there appears to be a disconnect between your mother and yourself & hospice. Hospice isn’t usually ordered unless one has a terminal illness.

The bowel issues bother me. If your father is chronically constipated they should have him on a regimen of miralax, & stool softeners daily. The family usually gives the person meds as the hospice nurse isn’t there 24/7. What is he getting on a daily basis to help him move his bowels?

Its not likely your father will improve enough to have CABG (coronary artery bypass surgery). While I don’t have recent labs, if his GFR is 19 his kidneys aren’t functioning well enough to get him through surgery. A risk too is contrast dye used in many testing procedures. With renal failure using contrast dye is contraindicated as excreting the dye can and will put his kidneys over the line.

Does he have a dialysis access - a catheter for hemo, a fistula or graft? Has he received any dialysis yet? Many times dialysis is performed on an acute basis to get excess fluid removed quickly.

You say you want to help your father “beat” this - what is “this”? Which condition? Do you doubt he needs hospice? If so, then take him off hospice and start aggressive treatment. But with a 100% blockage in one coronary artery and your father being a poor surgical risk hospice is appropriate as a treatment choice.

If you haven’t already, speak with your father’s doctors to get a validation of why your father is on hospice. I imagine your father is on many cardiac medications in an effort to improve what circulation he has to his cardiac muscle. How are they managing his blood sugars now?

I know this is a rough time for your family. Realize your mother is losing the love of her life so it may not have been easy for her to have agreed to hospice and now waiting for him to pass away. It sounds like your mother is comfortable with the decision to place your father on hospice but you are not. Maybe if you talk to his providers you can gain a better understanding of his physical conditions & why hospice is appropriate.
Your mother is likely going through early grieving and her behavior, which you disagree with, can be a coping mechanism for her to get through this.
Helpful Answer (14)
cetude Feb 2019
I agree much depends on the patient and condition. My mom will be 90 in six months but with severe end-stage Alzheimer's disease; someone like this would most likely not be a good candidate for dialysis because it would wipe away whatever little energy they have and the frequency of having to get dialyzed; they have to get to a facility three times a week and it takes hours. End-stage renal disease can be managed conservatively.
No, your are not expecting too much. Allowing Dad to be in pain and discomfort is not what Hospice is suppose to allow.

Dialysis is not done on Hospice. My GF, who was a juvenile diabetic, kidneys had failed to the point she needed dialysis. Years of needle injections collapsed her veins so regular dialysis was out of the picture. She was being given peritoneal dialysis. She was going to be allowed to to do this on Hospice if they could find or train a nurse who could do it. She passed before this could be done.

The decision to stay on Hospice is your Dads. The reason for it is to keep him comfortable and pain free. There usually is not any hospital intervention. If you and Dad feel he needs/wants to go to the Hospital, then take him. But, Hospice will probably discharge him. Mom really doesn't have a say.

By the way, they are not paying "out of pocket". Everything they are doing is billable to Medicare. The follow up calls are part of the service because they are not there 24/7. If the need for Hospice arises again, get a different one.

I say go with your gut but be aware, that if he stays on Hospice and is not getting dialysis, he will pass from the toxins in his blood eventually. All this should have been discussed before Hospice came into the picture. What they can and won't do.
Helpful Answer (12)
So good of you to educate us on how the system works. All of us has different situations and we can all learn from each other. Thanks.

You’re right about the differences between hospice facilities or treatment. The first hospice organization that my brother used wasn’t so good. He moved to a different location and decided to use an organization that was recommended by a friend of his and that one was terrific! He wasn’t in any pain, died peacefully. The social worker was very good as well.
You don't mention your parents ages.

My Dad was over 75 when he went to rehab. Mom put his diabetic socks on. (I asked why, thats why there are aides) She found two open blisters on his heels and mentioned it to the Nurse. They bandaged them but I mentioned it to my RN daughter. She looked at them when she visited. They were showing dead tissue, not good. She went out and demanded an air mattress and someone who knew woundcare. I am telling you this because my Mom was so complacent. I was the one that had that gut feeling. (We had a problem with CNA with attitude and Mom took it. Never would have allowed that from one of her children) Daughter handled that too.

Mom probably feels that Hospice knows best. Not always. There are good ones and not so good ones. It has to do with the staff.
Helpful Answer (10)
Wow, that’s scary. We usually assume hospice is wonderful but that isn’t always the case. You’re wonderful for caring as much as you did.
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First of all, if he has kidney disease do NOT give Milk of Magnesia or any kind of phosphate-based enema such as Fleets because the kidneys cannot excrete them. This will cause magnesium and phosphate toxicity. His hospice doctor should have prescribed LACTULOSE which is kidney friendly and will flush ammonia. Water and oil enemas are also good. On the average, a person can get impacted as little as 2 days and my experience with stool softeners with my mom is that they simply do not work. If he is on hospice, the nurses should be able to deal with his constipation..but sometimes you have to be proactive and insist on them getting LACTULOSE. If constipation is a chronic problem, use it daily. It is actually not a laxative but an indigestible sugar that once in the bowel will accumulate water thus allow evacuation. The same principle of sugarless candies that can cause diarrhea for some. My mom is insulin-dependent diabetic and it has not affected her accuchecks to the least. Like I said, Lactulose is not metabolized. Lactulose is requires a prescription, and is covered under hospice's formulary so it's free.

Much depends on the lifelong bowel habits. FOR SOME they can normally go once very few days. You have to know their baseline and go from there. Most people evacuate daily, but this is not the case for everybody.

Chances are he is impacted if he has not gone in 8 days, especially if he normally goes daily. He will eventually start vomiting feces. Believe me I seen it happen in other people. Vomiting feces can get in the lungs. Yes it is a medical emergency. Even at a palliative point of view.

If he is taking any kind of narcotics the chances of him getting impacted are much, much higher being a side effect.

KEEP A BOWEL DIARY, that is, write it on your calender when they had a bowel movement and write down the time. Describe if it was very small or very large or average sized. This way you will not lose track when they had their last bowel movement. My mom used to flush, but now she can't due to advanced Alzheimer's. I had to buy a flush lock for my toilet to ensure I had an accurate recording of her last bowel movement. I found a flush-lock on Amazon (it's designed to not allow children to play with the flusher) and it's been on the toilet for years.
Helpful Answer (10)
dlpandjep Feb 2019
Very informative - my Mother has trouble with constipation and I have learned a great deal from this post.  It was remiss of me to suggest an enema without mentioning that elderly and especially those with kidney failure should never use Fleets (sodium phosphate) enemas.  Thank you for such a thorough and informative post!!
Here's a different approach for you: you need counseling to learn how to support your father and your mother and stop fighting everyone and everything.

How do you support your mother? "My mother and I both care for my father but we do not agree with one another on any of his care." Her life must be excruciating right now. Don't make it harder.

While there are good and bad hospices, I can't believe "every single person on his team is totally incompetent." Talk with the manager of the hospice of your concerns. Learn the facts of his condition, what to expect on his condition, and what hospice can and can't offer. For example, my mom's hospice said we must call them if something issue develops but DO NOT just take her to the ER. If we do, then the medical costs are NOT covered by hospice. If you have a complaint, tell the manager.

You're in great pain yourself at your father's condition and prognosis. I get it. But don't make it harder on him, your mother, and yourself. His hospice very likely has counselors on staff--my mom's hospice did. He helped me enormously. Please seek them out.
Helpful Answer (8)
I totally understand feeling that everyone is incompetent. Surely you can't think 8 days without a BM is not an emergency?
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When all else fails, enemas work.  Constipation/blockage - why doesn't someone give him an enema?  Geesh.
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Not all enemas are premade. A enema bag with warm water and an oil could help without causing more problems. Soap is great but can not be used with heart disease present.
In my opinion only--if he's bed ridden quality of life is zero. Hospice at least will help with his care bringing in home health aides a few times a week for the bed bath, and they will provide a hospital bed. Bed ridden also will cause constipation due to lack of exercise.
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Hospice doesn't step in unless death is the only outcome. Most people that are dying....want to live. Call your church and have the pastor talk with him. If your Mom is in decent health and has her faculties.....she is in charge, and you should be backing her up. Hospice would not be there if there was any hope of a different outcome.
Helpful Answer (7)
acacia Feb 2019
Hospice is no longer available to only those with a life expectancy of 6 months or less. People come in and out of hospice care.
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Not an expert here.
But if the patient wants life sustaining care, instead of end-of-life comfort care, he can be removed from hospice, and be treated.

Support his efforts to explain his wishes to his wife, and to hospice.

It is my understanding that pain is treated, even in hospice, especially in hospice.
That can cause constipation and bowel blockages, which require treatment, imo.
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gdaughter Feb 2019
I don't recall if I mentioned prior, but there is a great set up called Curadux to help through these challenging medical might worth checking out. Good people.
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