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.
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.
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.
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.
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.
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.
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.
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.