Failure to communicate

Our frustration and anger at the local doctors who are supposed to be supervising our son’s care at the local nursing home (except I am not sure exactly who is in charge -- hospice or the doctors?) has been increasing daily during the past week, complicated by the fact that our son is somewhat friggled in the head, as my father would say.

Being his parent has always been a very challenging and frustrating experience for us (that was a topic of many of the early posts on this blog) because he is just “different” – not mentally retarded, not mentally ill, but probably a very high-functioning person with Asperger syndrome. The fact that he is dying has not changed him in that respect. He is still a challenge and he is still frustrating.

Early on when he was discharged to hospice, with one of the doctors at the local medical clinic as the admitting physician to the nursing home, hospice arranged for us to sign a power of attorney that allows us to make medical decisions for him only in the event he becomes mentally incapacitated to make decisions for himself.

But he is not yet mentally incapacitated. He is still mentally competent and independent and capable of making decisions, and unless we are also present in the room when any of the medical people taking care of him are there, none of these people are under any obligation to inform us of what has been said or what decisions have been made – indeed, they were prohibited by the HIPPA rules from disclosing anything at all.

So. Last Thursday, because of the alarming size his belly has grown too, the nurse practitioner from the clinic and the hospice nurse agreed that the doctor should do a belly tap and drain fluid out of his abdominal cavity. We happened to be in the room when this discussion took place. We were left with the impression that once the equipment needed for this was collected, the doctor would come in on Monday morning and drain the fluid. Over the weekend, the hospice nurse collected all of the equipment needed for this procedure and brought it to the nursing home. We assumed everything was good to go.

On Friday, one of the doctors at the clinic who comes to the nursing home to see patients – but not the primary care doctor of record – came into our son’s room and said “Hold on a minute… we can’t just go sticking needles in your belly without first finding out what is going on in there… we think your colon might be distended, we are not sure where your intestines are and how big the tumors are, and we need to get an ultrasound so we don’t kill you….”

Which is a prudent thing to do. The only problem is that we were not in the room when this conversation took place and during the many conversations we had with our son on Friday and Saturday and Sunday, he never bothered to mention this conversation to us. Later on when Richard confronted him about it, he said, “I didn’t think it was relevant.”

He didn’t think it was relevant. 
So, we waited on Monday for a telephone call from our son telling us that the doctor was there to do the procedure. And it never came…

We were very upset and Richard had a long discussion with the nursing staff at the nursing home and had them add our names to the HIPPA form, and had our son sign the form, so that we could be informed directly of medical decisions.

And then things got really wanky. We assumed he would be transported to the nearest hospital or to the imaging clinic for the ultrasound, but only later did we find out that the nursing home has a contract with a company that comes with a portable ultrasound unit.

Nobody arranged for the ultrasound.

The nurse practitioner who coordinates patient care at the nursing home for the clinic had jury duty on Monday and Tuesday so he was not even there to get the ball rolling -- and the clinic has no back up nurse practitioner to see patients -- and, so nothing was done. Finally, yesterday, arrangements were made for the ultrasound to be done this morning at the nursing home. 

A week has gone by. Our son’s belly swells by several more centimeters each day. He is now back on oxygen because the pressure from this fluid build up against his diaphragm is making it hard for him to breathe and his oxygen saturation levels are dropping. Any sudden movement at all puts so much pressure on his stomach that he vomits – not because of nausea but because whatever is in there is forced out.

Hospice is doing a wonderful job. There have been a few hiccups at the nursing home but it too has done a wonderful job at caring for our boy. The doctors: not so much.

So, here we are…. wondering how long of a delay there will be before the radiologist evaluates the ultrasound images and reports back to the doctor…. and then how long it will take the doctor to show up to do the tap… and… trying to take a deep breath and calm down and move through the day with some semblance of calmness.

On another note, I feel so blessed to have had the wonderful comments from people who have read the blog and have added us to their prayers and have sent such kind and caring remarks. I appreciate you all so much.