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.
A patient who wants to " beat" his illness is not appropriate for hospice care. Who "placed" him in Hospice?
Can you not get Medicaid or Medicare coverage for transportation to dialysis?
https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.cgsmedicare.com/hhh/coverage/coverage_guidelines/esrd.html&ved=2ahUKEwjng_X4vMzgAhUOMt8KHS6TDC8QFjABegQIDxAG&usg=AOvVaw1A7lRbXXMvq--YPoDvwEI7
Perhaps you should look for a hospice organization that will agree to dialysis. If his terminal dx is not related to ESRD, it appears that dialysis should be provided.
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.
Contact the patient advocate of the hospice agency.
File a complaint at Medicare.gov.
Tell a Medicare beneficiary ombudsman that you'd like to file a complaint, and he or she can help you.
Sep 10, 2018
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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.
I’m so sorry for your dad’s situation. He certainly has a lot going against him. 😢
He is existing on very little heart function and with him being unable to tolerate the surgery, I don’t see how that’s going to get any better on its own.
The mesothelioma is also a chronic condition that will not get better. From mesothelioma.com;
”Average life expectancy for mesothelioma patients is 12 – 21 months. How long a patient lives depends on several factors, including age, stage of the disease and overall health. Approximately 40% of patients live past one year, and 9% live longer than five years.”
The diabetes is also a chronic disease with no hope of a cure or reversal and it wreaks havoc with the circulatory system, causing heart disease, high blood pressure and kidney failure. Maybe the blood pressure can be brought under control with meds but often not well enough.
COPD is chronic and usually worsens as time goes on.
The chronic constipation and colon blockages can be from being bedridden, narcotic use and possibly a bit of dehydration.
Your dad may be afraid to pass away. That’s often why people who have terminal illnesses want to “fight it”. Realistically speaking, the future doesn’t look too positive for your dad to regain his health. He may be in denial of the severity of his conditions. My stepdad had end stage lung cancer but was going to “fight it” too. He lasted 6 months. I think he did it for my mom.
Please talk to all his doctors about the possibility of treatment and cure. Doctors usually don’t suggest hospice unless nothing more can be done.
If this hospice isn’t “right” for him/ your mom and you, select another one-preferably one that has a high rating or referral. Then, ask to speak with a counselor. You can come to see that this situation possibly won’t change for the better, but, all the while, you will be able to support your dad in his decisions to ask for treatment (of what the doctors will and can give him). In other words, it may be a good idea to prepare yourself for a negative outcome but present a positive picture to your dad.
God bless you all in this difficult time.
The only additional information I can attest to is that Dilaudid (per others here ANY narcotic) can result in impaction. I was given this Rx after spinal surgery and there's not much worse than having to get a ride to the ER while still wearing a cervical collar to get a manual evacuation and enema.... I avoid medication in general and will NOT take narcotics again (never say never, but unless I am on a lettuce only diet, I will avoid them)!!
Ill try and answer some of the many questions many of you have had.
Yes I am in denial. I know that I am because I know me and my philosophy has always been I won't give up until he tells me he is tired and doesn't want to fight or he has taken his last breath. My mother on the otherhand, gives up without any fight what so ever. Which is why he is on hospice. The cardiologist and kidney specialist were in the hospital giving him dialysis and the cardiologist was trying to determine (I think anyway)if dad could get strong enough to at least have stints put in. He was asking if Dad was a smoker (no )was dad a drinker(no)mom got upset with questions and asked him to leave and out of fear and frustration demanded that he be sent home on hospice. That is how he came to b on hospice. When hospice came to the house to discuss everything with us even they asked mom if she was sure she wanted hospice. She again became angry and said yes she is sure. So he is on hospice. She has never been a caregiver wife or mother. We all know that. I do everything for him but change his diaper. She does that. He doesn't want me to see him that way and I don't either even though I will if I have to. He doesn't like to ask her to do anything so he waits until she leaves the room and then he will ask me to scratch an itch or rub biofreeze on his back.
You all are right he is on limited time. So I do not make my feelings known to my parents because I know it will just make things harder for my dad.
Dad is approaching 73 mom is approaching 71. And no mom and I have never gotten along. But that really isn't so much the issue - for me anyway. I want my dads last days to be wonderfully memorable for us as well as for him. But I don't trust my mom. I don't trust her at all. A prime example is tonight at dinner, she was cooking. I said I would take his glucose reading and give him his meds. I did. I gave him his shot and his pills. I logged it on the notebook. We ate I went to the restroom and announced I had to pick my daughter up I would b back in a minute. Walked past dad and noticed he was getting ready to give himself another shot. I stopped him and asked what he was doing she defended him by saying she was giving him hi_ shot. I said I just gave him his shot before dinner. She said oh see I didn't know that. That is why I suggested the notepad. Same problem with his pain meds. If he needs one I give it to him. Mom gets mad and says he is going to get hooked. So he waits till she goes to bed and asks me to get him a pain pill and leave 1 on his tray invade he wakes up in the middle of the night. He doesn't want to bother waking mom up for a pain pill.
Im sorry I intended on making this a quick update and ended up venting. I want to thank everyone for the suggestions. It's helped more than you know.
Just now I did a quick search.
From https://www.nhpco.org/about-hospice-and-palliative-care/hospice-faqs
"Will I be the only hospice patient that the hospice staff serves?
Every hospice patient has access to a hospice volunteer, registered nurse, social worker, home health aide, and chaplain (also known as the interdisciplinary team). For each patient and family, the interdisciplinary team writes a care plan with the patient/family that is used to make sure the patient and family receive the care they need from the team. Typically, full-time registered nurses provide care to about a dozen different families. Social workers usually work with about twice the number of patients/families as nurses. If needed, home health aides, who provide personal care to the patient, will visit most frequently.
All visits, however, are based on the patient and family needs as described in the care plan and the condition of the patient during the course of illness. The frequency of volunteers and spiritual care is often dependent upon the family request and the availability of these services. Travel requirements and other factors may cause some variation in how many patients each hospice staff serves.
Is hospice available after hours?
Hospice care is available ‘on-call’ after the administrative office has closed, seven days a week, 24 hours a day. Most hospices have nurses available to respond to a call for help within minutes, if necessary. Some hospice programs have chaplains and social workers on call as well."
The above is more than I wanted to post, but the first paragraph covers what staff is provided and talks of a care plan, the second the fact that care should be available 24/7.
I have also read others comments about how hospice is there for the family too. Do you have access to his "care plan"? Is it possible your mom prevents them from coming nights or weekends? If this group is just bad at doing the job, do you have authority to change to another organization (aka POA that might override mom's decisions or help dad find another place without consulting mom?)
Given mom seems to have issues with both the care and medicating, is it possible to have dad move to a NH, where he might get better/consistent care, and perhaps maybe at least feel better? Unless you live with them and can provide most of the care/medicating, and ensure mom's "care" isn't counterproductive, this could be an option, if he is agreeable. So long as he still is capable of making decisions, mom shouldn't be overriding what HE wants.
Venting, however much or little, can be good! Glad to hear that dad's been able to "go".
Had to break my comments into two! yak yak yak!
Although I can commiserate with you on where there's a spark do what one can to keep life going. My oldest cat (almost 20) has been going slowly down the CKD path (similar to dad's kidney disease.) I realize a cat might not compare to a parent or other loved one, but she is special to me. She's been with me since about 2 months old (found as a stray) and we are very attached to each other.
There is no cure for CKD, only some treatments to ensure the cat doesn't feel like crap. After being medicated for Hyperthyroidism but still losing weight, she went in 2 years ago for the "cure" treatment - no issues since (she was 18 then.) Having found some lung growths in April, I took her to a specialist, hoping for treatment, if possible, or at best palliative care suggestions. What a waste of time and money! The doctor there only repeated the tests we had just done the month before (had those results sent to him before the appointment) and was told the only way they can determine treatment, including palliative care, was to do a surgical biopsy or lobectomy (location prevented regular biopsy.) Given her age, CKD and inability to gain back all the weight lost during the medication treatment period for the thyroid, I would not put her through surgery (warning given was that she might not tolerate/survive it anyway!) So, long story short, I give her whatever she wants to eat and try to make sure she's not suffering. Much as I would like to cure the lung issue, at this point it is a race in time between the kidneys and the lungs. That useless exam was 6.5 months ago and she's still here. So long as she is eating, using the litter box, able to get around on her own and relatively comfortable, I will let nature take it's course. I had been preparing myself for losing her, but another developed a sudden serious issue (age 15) and was lost the same week as the lung results and losing my uncle. :-( I was NOT prepared for either!
In your dad's case, it is a difficult place you are in. He wants to live. Your mother can't or won't deal with any of that. You want to help your dad. Rock and hard place. I would probably be more in your camp, but at some point would have to try to be more realistic.
If the kidneys still have some function, keeping up whatever you are doing to keep them going is good. If he could get transport to dialysis, would he be capable/willing to sit through many hours of treatment? It is not a quick trip!
Same with the heart, working on whatever you can to help - get some suggestions from the doctors, such as any kind of exercise that might help.
You had mentioned mesothelioma - I had to look that one up. That does not have a good prognosis, unless treated VERY early. Someone else posted the estimates for survival, but we don't have any idea when this was found nor how far along it was before being found. Despite your best efforts, surgery might be very bad for your dad (he might not survive the anesthesia due to both the heart and kidneys.) Obviously it would have been best to let the doctors do their testing to determine that, but even their best guesses might not be right, either way.
So, given other's comments and my feedback on hospice, it might be good to explore what options you have for hospice. Changing to another group might work out for the best. If dad continues to improve, he can always go off hospice and seek treatment for the heart and/or kidneys. Focus on quality of life rather than quantity. Would it be better to spend 1/2 the week in dialysis or spend that time doing something more enjoyable, getting out with your dad if you can to make some good memories (assuming he can get out with your help)? If he cannot get out and about with you, find things you can do together to make his time more fun - games, puzzles, movies, small projects, etc.