I'm asking this because after six days in the hospital for severe chronic osteomyelitis, I finally met with the infectious disease doctor in charge of dads care. He told me that there was no chance to cure the infection without surgery,which my 90 year old dad was not a candidate for. He suggested hospice. After watching dad in severe pain and having delusions, I agreed. They moved quickly and got dad transferred to a hospice facility. I'm conflicted, because I do not have health care POA unless dad is incompetent. He was competent right up until he went to the hospital. He doesn't even know he's in hospice care. He may become more coherent now that he's out of the hospital and in a quiet environment. In fact, I was told that he had a full nights sleep, which he hasn't had for over a week. So, when and how do I tell him where he is? And doesn't he have the right to make his own choice if he regains his mental faculties? Honestly, I don't think I could go on that journey with him, if he decided to fight for his life. My tank is already on empty- but, I'm feeling anxious that I might have made a decision that wasn't mine to make.
He looks much better today, and we had a great visit. He's too sick to eat much, and sleeps most of the time, but the delusions he was getting in the hospital are gone.
One of our specialty doctors explained that palliative is for people with chronic diseases that aren't immediately life threatening. Someone could be on palliative care for years, with no terminal diagnosis having been made.
Palliative care could include a lot of diseases that may eventually cause cessation of life, but is not likely to do so w/i the next 6 months.
I'm still exploring this and learning more and more about palliative care, and the different levels of care offered. A few companies offer it only on a limited basis - phone consultations with their affiliated medical staff but no on sight evaluation on a regular basis. Big deal.
Others are more "hands on", sending an NP once, RNs thereafter, monthly, twice a month, or potentially more often for monitoring. It's unclear about therapy, but I've been told by one company I've called that some therapy could be provided if ordered by a physician. This would at least keep the patient in better condition, and theoretically, depending on the chronic condition, help keep the patient healthier.
Kendra, ask the treating infectious disease doctor, or perhaps the hospice doctor, what is the time prognosis for end of life? Is it 6 months or less? Will the chronic osteomyelitis be the cause of death? Raise the issue of palliative care instead of hospice. If you don't agree, you have the right to contact palliative care companies and ask for an assessment.
The Alz. Assn. has provided me with good lists of companies for different levels of skilled and nonskilled care. I just got a list of palliative companies from them and have been wearing out my ear with phone calls.
As to who has the legal right, it's my understanding that a doctor has to script for hospice and/or palliative care. However, I personally believe that the family has standing to make its own decision. And the family certainly has a right to ask for the doctor's opinion and position on decisions he/she has made.
The first thing I'd do is ask whether or not your father is getting treatment for the osteomyelitis. Monitor his cognitive functions (not with the silly 3 question "dementia test")' you'll be able to tell if/when he returns to "his old self."
I noticed a similar effect when my father went through and is still recovering from the last hospital/rehab/home care experience. The first few days were very unsettling; I anticipated a bad outcome. That was a month ago. Now he's outside walking again.
And I'm sure others here can tell you that they might have been confused and/or unable to think clearly when they were hospitalized. It's NOT an emotionally healing environment, and isn't conducive to clear thinking.
So see how your father might change from day to day, and wait until he's thinking clearly before raising the issue with him. If he's able to recover cognitively, it is HIS life, and his decision. I imagine others will disagree, but that's my opinion.
Doctors make decisions clinically, as they should, but some (as the ones we've chosen do), have treated my father for more than a decade and factor his personality and determination into their recommendations.
It's not easy to make a decision when a physician sees someone only in a hospital, under adverse conditions, and has no idea what the patient's personality and determination are.
I would not tell dad that he is in a hospice facility, there is no need. What would his other option have been ? a nursing home or being cared for in your home. The hospice staff will have more time to care for dad and the family and are experts in comfort care so this is the best place for him. No more IVs or having to eat and drink if he does not want to. he won't be made to get up every day and spend hours sitting in an uncomfortable chair. They are uncomfortable I can attest to that.
It is hard to watch someone at the end of life but don't try and change anything unless you feel the care is not first class then don't be afraid to speak up.
If he does rally towards the end don't try and explain anything to him just be with him and love him. There is only one good day so make the most of it and tell other family members to say their "goodbyes"
My Dad had the start of dementia but was clear minded enough to still be able to crack jokes, but I never told him he was on Hospice. I felt that might put him into a panic, so I just let nature take its course, with Hospice there to make him more comfortable. He was ready to join my Mom, the love of his life, who had passed a year prior.
Please note that some patients who are nearing death will rally, making us think they will be ok and will recover. That happened to both my parents. But then there is quick turn around and they start that transition journey.
Dad is NOT a candidate for surgery; meaning, I assume, that dad's doctor's won't clear him for the surgery. And that the surgery would likely result in his death.
When dad's head is clear, if that happens, perhaps you can arrange for the hospice social worker or chaplain visit him and talk about what hospice can do for him.
I'm hoping others will be along with good suggestions.