Let me introduce my step-father:
This is a man whose own family has used him up and cast him out. An incredibly hard worker his whole life and the most intelligent and compassionate of humans. He and my mother married just short of 10 years ago and he was delighted to find that my siblings and I welcomed him so completely. He has been a huge part of my life, even walking me down the aisle at my wedding.
Back then, he had many health conditions from a life of traveling and wining and dining for work. He was overweight, had diabetes, gout, and had suffered multiple heart attacks. My mother did her best to encourage a healthier life style and keeping him on track with the doctors' and nutritionists recommendations.
18 months ago: He has come down with pneumonia. Not the first time. He becomes septic and is hospitalized. Also not the first time. But this time, his kidneys have failed. He eventually makes it into a rehab where he is getting PT to help him regain his strength and is adapting to a life on dialysis.
He has been bed ridden ever since. Eventually he makes it home where my mother adapts to a life of being his in-home caretaker. She does an amazing job, as well as the nurses, therapists, and the rest of the team caring for him. They have a home dialysis set-up and a hospital bed.
He was doing well in his PT until they noticed a sore on his foot. He is told to stop the PT until that is healed and begins to lose all his built up strength again. The sore gets worse and worse and will not heal. Eventually, they do a done scan and find that he has a bone infection. It is determined that he will need to have his leg amputated.
At this point, we are shocked. It feels like every time he takes one step forward, he get pushed back two. Still, we are positive and coping. There are many current medical advancements that will offer him a mostly normal life. He is only 68yo- this is not the end.
Last week: the nurse that visits him at the house notices his blood pressure is abnormally low. He is taken to the hospital with critical heart failure. Now it is a race to get his heart stabilized so they can safely remove his leg. They put a catheter in his heart and he is approved for the surgery. It is successful.
Only something has changed in him. Obviously, he has gone through a great loss, and I'm personally surprised that he isn't immediately seen by a therapist. Due to COVID we are unable to visit to lend our support but with his shift in personality, I'm starting to think that is a good thing. He is bound and determined he is going home. NOW.
He refuses his medication and his dialysis. He is completely defeated. As it turns out, one of the doctors has put it in his head that he is never leaving the hospital because of his heart. Eventually my mom gets to Zoom with him while a doctor and a nurse are both present and she gets him to agree to let them administer his meds and dialysis. He refuses to verbalize that he wants to die, but admits knowing he can't survive without treatment.
Before the Zoom call, he was talking conspiracy theories. He has done this before while being in intensive care but this time is different. He isn't on any major pain-killers (which I know can cause anger and disorientation) but is talking nonsense. My mother is scared and confused and being torn down by him either being angry with her that she doesn't understand his delusions or the fact that she says he can't come home yet. We both tell him that as soon as his heart is well enough we will bring him home but by the way he talks, he just want to come home to die.
He has a heart scan today that will determine whether his heart is doing better or worse after getting the leg removed. Function had gone from 55% to 16%. He needs good news. We all do.
He keeps talking about exercising his rights. My mother is his POA but he is coherent enough to fight her. How do we determine whether he is in his right mind to make a decision to refuse treatment?
As much as I sympathize with my father's plight, I have found that I am having a hard time understanding that his willingness to end his suffering is justified. It just doesn't feel like he won't make it through when he always has. The doctor used the phrase 'multiple organ failure' to describe his current condition and it was very hard to absorb, though I know it's true.
I absolutely want to do what is best for him, no matter the outcome. I think that the possibility of him not being in his right mind makes it easier for me to question his decision making though I would do the same in his shoes. He is being seen by a team that is set to help him figure out his goals though I'm not sure how well he is cooperating.
My main concern is that he will not say that he wants to die- only that he doesn't want treatment. In my mind those are not the same things, though I can see how he may just not be able to, or feel comfortable, vocalizing his yearning for the end. I feel like if he said 'I'm done and I understand that means the end' I would know that he knows what he is choosing, but that is asking an awful lot.
As of right now, they are trying to move him out of ICU so he can be in a more comfortable room and hopefully that will help with whatever delirium he may be experiencing. I have not heard the results of the heart scan but will be sure to update, given the invested responses.
Once again, I couldn't have asked for more from you cool cats and am so very thankful for your support.
He sounds exhausted, as I'm sure you and your mom are. It sounds like he may have some delerium? He is being consistent with his central thought, however.
Why not ask for a palliative care consult? That team can work with him to help clarify what his wishes are. A palliative care consult provides supportive care with the intent to treat conditions, as opposed to hospice, which is care to keep the patient comfortable. They'll assess what his state of mind is and get a neuro or psych consult if need be. They'll collate all the information from the various teams that are seeing your stepdad and come up with a care plan that meets your stepdad's needs. Good luck!
Could one of his doctors talk to him? A few years ago my mother needed valve replacement. We all sat in his office and the head cardiologist asked my mother how long she wanted to live. She replied longer. So she had that surgery and that aspect of her life improved.
Now she is bedridden after a septic infection. I wished she could have given me a sign of her wishes. Because of her religion I don't think she is likely to do that. She is having PT and seems to enjoy the basic freedom of sitting in a wheelchair and making it go somewhere. I would never want this life. She is also off of oxygen which I had been told would be unlikely.
My point in all this is that people get to the stage when they are ready. Not always of course but some do in situations. I think the right individual in the medical world around him might help him arrive at what he wants from the life he is living. It's not necessarily up to us to figure it out along as the person in conscious. I hope you can find peace with whatever happens.
Your physicians may request a consult from neuro-psyc and that is appropriate at this time. I can only tell you that were this my Dad, I would understand completely his wish to now be done with life, with pain, with misery. I can only tell you that I would welcome and support his wishes if this were my Dad. I can only tell you that I have zero fear of death, but my fear of being forced to live on under these circumstances is strong indeed.
Only you and your family can best decide how to proceed. I am hearing in your writings really no acceptance yet. I cannot know where your Mom is in this. If your father chooses palliative and Hospice care I can only plead with you that you honor his wishes. If you do NOT, I think that in terms of life span left to your Dad it will not make an enormous difference. What has befallen him has little to do with willingness to fight, with wanting to die. What has befallen him is diabetes and this is often the way of this disease.
I couldn't be more sorry for all your stepDad has been forced to go through. It sounds as though he has been very good to you, a very loving man, and your fierce love for him does that honor. I am so very sorry.
These decisions are for the patient. Please listen to him and honor his wishes. You cannot imagine the exhaustion of having to live and endure near constant pain and debilitation. You see it. But you are not LIVING it. I cannot tell you how many patients were unable to be honest with their families in letting them know their wishes to be gone; they told their nurse. That was me.
I think you all have to go along with whatever your dad is saying right now; just pacify him. If he's talking about conspiracy theories, just agree with him, what's the difference. Does he have a living will in place or has he made his wishes known for how he'd like end of life care to proceed, should he find himself in such a position?
I don't think he can 'refuse treatment' while suffering from obvious hospital delirium and have the doctors agree to such an order. Also, your mom is his medical POA and I believe SHE can exercise HER rights in this case and override him if need be. Besides, he's in the hospital FOR treatment of a serious condition, so the doctors are obliged TO treat him.
I think you need to have a chat with his doctors about this very subject; express your concerns about his hospital delirium and what rights he has in such a state. And what rights your mom has as his medical POA.
Wishing you the best of luck and the best outcome possible for your dear dad right now. Sending you a hug and a prayer for strength, too.