I have written about dad’s hospitalization before, in a sort of summarized version of 2 months worth of events. Today I am going to focus on the discussions about end of life care with dad’s physician that resulted from this emergency.
It was Saturday morning in November; exactly a year after mom fell and broke her hip. An aide from Ruby Court, my father’s assisted living facility, telephoned to tell me that dad had blood in his urine. It was too much blood she said and he needed to go to the emergency room right away. I could come and get him or she would call 911. I said to call 911 and I will meet him there. I believed he would be seen faster if he arrived by ambulance. I was out the door and at the ER in record time.
While driving to the hospital and waiting for dad to arrive, my mind went back a year to mom’s last illness. I had really re-lived those days hundreds of times already. How can I get the doctors to take 5 minutes to talk to me about our goals in the hospital? How do I explain that yes, I want dad to get good treatment, but I want them to prolong life, not prolong death.
I wanted to talk about the difference between curative care and comfort care and make sure that dad got all the comfort care he needed without pushing for the latest technology for whatever his problems were. Of course, no one even knew yet what the problem was.
When dad came in, they first put him in a temporary intake room and then in one of the ER cubicles. After filling out initial forms (name, insurance, etc.), very little seemed to happen for many hours. The emergency room, like all emergency rooms, was overcrowded and understaffed. The nurses and doctors were triaged to people more obviously ill such as the patients brought in from a nearby serious car accident.
A nurse tried to catheterize dad but were unsuccessful. He was then in a lot of pain and they gave him some cream for the pain. He had to urinate frequently all day and each time they placed a small urinal in his bed. They refused to let him up because they were afraid he would fall. He had difficulty going in the urinal in his bed. His urine was so bloody it seemed to be 90% blood and less than 10% urine.
They ran some tests including a culture and determined that he had a UTI. Other scans and tests didn’t show anything conclusive. After we spent about 10 hours in the emergency room dad was discharged with a prescription for an antibiotic and instructions to follow up with his geriatric physician the following Monday.
Sunday when I went to visit dad he had no memory of spending the day before in the emergency room. He did tell me several times that he had blood in his urine, and he told his aide also.
Monday morning when we arrived at his doctor’s office, she took one look at dad and said she wanted me to take him back to the hospital and have him admitted. He was too weak to stand up. I asked how we could make them admit him when they discharged him two days before. She said she would call them and ask that he be admitted.
I asked her how dad’s medical wishes would be followed according to the forms he had completed with the lawyer. I said I was afraid things would move too fast in this hospital the way they did for mom in the southern hospital. She said dad needed to complete a standard state DNR form to put in his medical record. She then filled out the paperwork and gave it to me to bring to the hospital so they would have the forms in his file.
I had done a similar form on yellow paper in the south when mom and dad were admitted to their ALF. In this state, the form was bright pink and would also follow the patient wherever he went.
I had to make a quick decision as I had never seen the forms before and it was different from the forms I had completed before. (This one had more options.) However, we did have the legal forms dad had done with the lawyer just months before. Based on that, a quick discussion with the doctor and my knowledge of the wishes dad had expressed in the past, I checked both DNR (Do not resuscitate) and DNI (Do not Intubate).
I want to stress here that these state DNR/DNI forms are legal documents and are more binding than the “advance directives” and statements of a health care surrogate. Even when I bring the lawyer prepared health care surrogate forms with me to the health care setting, it is not necessarily accepted by the health teams caring for dad. However, the state DNR form is almost always accepted by EMS and other health care settings in the state in which it was prepared and kept in the medical records. It is important to have both the health care directives (which can be more specific about health care procedures desired) and the state specific DNR/DNI forms).
Within less than an hour, we were back at the emergency room, waiting again. Again they tried to catheterize him – twice – and both times were unsuccessful. That day was pretty much a repeat of Saturday, waiting most of the time for doctors who rarely made an appearance. But this time, at 9 PM, instead of discharging him, they were giving him a room in the hospital. Technically, he was not being “admitted”. He was merely being kept for observation on the same floor where he would be if he were admitted.
There are legal differences between an “admission” and an “observation patient”. If he were admitted, he would have certain rights under Medicare that he did not get as an observation patient. In the end, it didn’t matter as after several days he was officially admitted. However, it could have been be much more expensive for dad if he were not admitted. Medicare will not pay for a nursing home stay after a patient is an observation patient rather than admitted.
This had been another long day in the emergency room. I was exhausted and so was dad. It was the beginning of a ten-day of hospitalization for dad. Already he had no memory of why he was there. And I wasn’t sure of the ultimate cause, other than the UTI we already knew about. I worried constantly about the conflict of when to push for treatment and when to say no, it was time to focus on symptom and pain relief.