My 83 year old father has end stage congestive heart failure and kidney failure. He has both a pacemaker and an implanted defibrillator. Two years ago he was told he would not recover; his doctor suggested hospice but gave him the option of Milrinone, via a PIC line and 24/7 infusion. My father chose the Milrinone. At the time, his doctor told him him might live as long as six months, but that the Milrinone would eventually stop working. In the meantime he warned my parents that any disruption -- even an hour -- of the Milrinone could result in Dad's death.
Fast forward to today, and Dad has survived longer than any Milrinone patient his skilled nurse has ever worked with -- but he is in terrible condition. Neuropathy has left him with no feeling in his feet or lower legs. A worsening of his condition landed him in the hospital (3rd time this year) about 8 weeks ago. While in the hospital he fell out of bed and broke his arm very badly. To our surprise, a surgeon agreed to perform emergency surgery on the arm, which Dad survived. He was then sent to a skilled rehab facility for 9 days -- his last day there he fell again and ended up with a terrible contusion below his knee that turned in to cellulitis within a few days. The morning after he arrived home he fell again and broke the same arm (stable spiral fracture) again and ripped a bunch of skin off that arm -- the ER bandaged him up and sent him home.
Throughout all of this my Dad has refused any additional time in a skilled nursing facility and insists that he is going to fully recover and walk again. However, he is now unable to even stand. Yesterday, his skilled nurse showed up for his weekly visit and called can ambulance because Dad basically couldn't breath (heart rate in the 50's and oxygen level 80 and dropping). He said if he had not come, Dad would likely have died yesterday.
My mother is my Dad's primary caregiver but shows signs of pretty significant cognitive decline. Both she and my Dad have refused to allow me to do anything other than spend time with them and hire a CNA to help Dad 3 days a week -- although they are very resistant to even that or to allowing her to perform all the services she typically would (they even cancelled one of her visits).
At this point, Dad is unable to sit up to eat because there is so much fluid trapped in his abdomen that it restricts his breathing. However, nobody seems to be having a straight forward conversation with him and my mother about where he is at. When they checked him in to the hospital, yesterday, they asked if Dad has an advanced directive. He does not. He said he would want to be resuscitated, if his heart stops.
We have been told that Dad cannot receive Hospice care so long as he continues the Milrinone. Dad refuses to end the Milrinone treatment because he believes it is keeping him alive -- however, according to his nurse, it is actually palliative. What he needs right now is oxygen and something for the severe anxiety his declining oxygen level and difficulty breathing are causing. It seems he can't have both.
Are the Milrinone and pacemaker and implanted defibrillator going to mean he lingers and experiences the worst kind of death from congestive heart failure and kidney failure?
Mom and Dad both seem open to my questions and advice, but the most important -- for instance, if asked, I would advise that he stop struggling and go on hospice -- is not something I have been invited to participate in and I do not want to scare him or impose myself on his desires.
What kind of discussion should I try to have with his doctor and Dad and Mom? It isn't clear to me that any of us really understand what his options and expectations should be right now.
As a critical care caregiver, these obstinate patients even affect our emotions. I've lost sleep over them. Worst one was an entire family watching CPR for hours even though we knew the patient was gone.
Either hospice can give you a magnet to keep it from shocking dad at the end, or depending on the model of the pacemaker, the pacemaker people can send in a tech to turn it off. Mom had it turned off in her doctor's office, it was simple and absolutely non-evasive.
Hospice recommended it to us, because at the end, there was the possibility it would start shocking mom - which wouldn't have done anything to - or for - her but is difficult for family members to witness.
Mom kept it for about 6 weeks, then went to the cardiologist, declaring (and this is a direct quote!!) "This thing is a pain in my a**". She insisted it be removed, and went into hospice care.
She did NOT die right away once the milrinone was removed. I know what you mean, they told me the same thing when they hooked her up, that any disruption for even a few minutes could be deadly. But when her line clogged, and it took an hour for the nurse to clear it, she didn't suffer any ill effects, and with the doctor's blessing, I did unhook her for things like a shower, because trying to shower her with that line was a nightmare.
I had also done some of my own research about milrinone. It's primary function is for use as a "bridge" for a patient who is on the verge of a heart transplant, and whose heart is not functioning well enough to last until that transplant happens. From what I remember, those are the patients for whom a cessation of the medication becomes life-threatening. Temporary cessation of the medication seemed to be less of an issue for CHF patients that were using it to help mitigate symptoms.
Mom lasted 8 weeks after the PIC line was removed.
When I asked the VN how long she had seen people on milrinone live, she said "oh, years!"
If dad is insisting on continuing his treatment, I'm afraid there's probably nothing you can say to him that he hasn't already been told. And no, unfortunately hospice will not admit someone on milrinone, because it is considered a "life extending" treatment.
The only thing I can really recommend is to have an open discussion with dad - without mom present, so as not to ramp up her anxiety - and ask him if he has considered what he wants his "ending" to look like. Maybe if you can ease his fears about your mom's well-being, it might make the idea of palliative/hospice care more appealing.
I send you big (((hugs))). I know how hard this is to witness.
I will try harder to get an appointment with his CHF doctor. I've left messages at the hospitals Dad has been in and have also done my best to "catch" the doctor (any doctor) during my visits, but I do not get a call back and they always seem to show up immediately after I leave. Medical staff -- all heroes in my book -- are stretched so thin right now.
I am considering just staying at the hospital with Dad, this time. I suspect he has reached the end. I hope he has time to revisit the hospice discussion with his doctor and our family and make his own choice, based on realistic answers, about how he wants this to go. It may be that where I am concerned, all he really wants his the comfort of my presence.
Of course, for me, it's the hardest thing. But then nothing is easy about watching your father die. Not one single thing.
https://www.mypcnow.org/fast-fact/cardiac-pacemakers-at-end-of-life/
So it appears dad would have to agree to stop the Milrinone treatment in order to get oxygen and calming meds.........so trade comfort for life extending measures. He gets hospice care to give up the Milrinone, which is up to him of course, but is a clear cut no brainer for you and I. Your dad is so afraid to die that he is choosing to suffer OVER getting comfort meds to prevent it. That seems to be what's going on here.
I think the doctor needs to sit down with dad and explain to him that his life is winding down now, with or without Milrinone treatments, with or without pacemakers and defibrillators.........his time is nearing it's end. There is nothing more that can be done for him, medically, that hasn't already been tried. Therefore, his choice is to bring on hospice services to CUT DOWN HIS PAIN levels and to allow nature to take its course now, or, to continue on with useless life extending measures such as Milrinone treatments and suffer as a result. In any event, his body will expire when his heart is too tired to take another beat. That is the message that should come from his doctor, so your dad will understand that his body is not a machine that the doctor can plug into a wall to be kept alive by artificial means. That the only goal now is comfort care.
I pray that your dad is receptive to what the doctor has to say to him, and that his fear doesn't overtake his desire not to suffer. I hope that for your sake as well, because seeing our beloved parents in such fragile condition takes a terrible toll on us. I feel for you, and I hope that God interjects and gives you all some blessed peace now. It choked me up to read your response to sp about how your dad is trying so hard to be stoic for mom's sake. I've seen that behavior in my own father, and how hard he fought against a brain tumor to stick around for my mom and I. And how he let go when my husband told him he'd always be there to take care of mom, me and my daughter.
Who has POA for Healthcare?
Have you TOLD the docs that they need to talk to mom and dad straight and tell them the tough call they need to make?
Who told you that this med would not be allowed on Hospice? Have you asked for an actual hospice evaluation? Argued with them that the med is palliative?? Can dad pay for it out of pocket?
https://www.reliasmedia.com/articles/115851-dobutamine-and-milrinone-acceptable-for-in-home-hospice-care#:~:text=In%20the%20short%20term%2C%20dobutamine,on%20dobutamine%2C%22%20says%20Mulder.
I have been unable to have a discussion with Dad's doctor, but I have told his nurses they need to talk to Mom and Dad straight about this. In fact, Mom and I had a very straightforward conversation with his nurse yesterday -- but he is a skilled nurse and not a doctor. The discussion left me with more questions than answers.
Multiple people have told us Milrinone is not allowed on Hospice, including a discussion we had with his original skilled nursing staff (who fired him after 8 months on Milrinone because they believed he should be on hospice instead). This was confirmed by his skilled nurse yesterday, as well.
Dad cannot pay for it out of pocket. Incredibly expensive medication, even just the co-pay with Medicare Advantage.
Thank you very much for the link to the article on Hospice and this drug. I'm glad to know there is discussion and differing opinions about it with regards to palliative and hospice care.