Whether it be a dimly lit hospital room or a sun-filled examining room at a doctor’s office, we all have been aware at some point of the sterility of the surroundings when our loved ones are told of their prognosis. Little warmth is emitted by health care personnel (perhaps out of fear for getting too close or caring too much for someone who will soon leave their lives). Crisp sheets, crisp answers and cold, sterile instruments. Perhaps at this point in their journey through the medical “jungle” of conflicting diagnoses, experimentations with numerous medicines and counteless conversations with insurance carriers in hopes that mis-billed procedures will be corrected, our loved ones either don’t notice the sterility or perhaps they simply don’t care.

Who does that leave to notice? And as our loved one regresses in condition, who does that leave to deal with the sterility of it all? It would be safe to say that if a caregivers hasn’t yet dealt with the cold, crisp world of the medical community, then the caregiver is new to the role! Thousands of homebound, isolated family members today are 24/7 caregivers, and many of our loved ones no longer are able to make decisions regarding their abilities of what they are or are not able to do physically. Many are bedridden and depend on their caregiver to handle all communication with their doctors, specialists, aides, nurses pharmacists and a variety of assistants. Therefore it is the caregiver who feels the sterility (when it exists) when trying to deal with the medical community. One could wonder if any doctors ever become caregivers to loved ones and if so, what type of communication they are willing to settle for as they reach out to a fellow doctor for information and compassion.

Until Mom got so sick the only involvement I had with a doctor was with my own for my disability, and he always explained everything to me. Naturally when Mom became ill I thought that her doctors would explain things to both of us. NOT TRUE!!

Our first experience was when she had a TIA (or mini-stroke) and fell down on the kitchen floor. She could talk and recognized people but to this day has no memory of anything that happened. The ambulance took her to the hospital about 4 pm and at 9 pm they told me to go on home as she was to be admitted. At 11 pm I got a call to come pick her up, even though she could not walk, and when I got to the ER the nurse was outside with her and “could” not answer any questions as to why she was being released. She fell again during the night. The next morning I called her doctor and after telling him the entire set of events, he told me to take her directly back to ER by ambulance and advised me to have the ER personnel contact him if there were any problems. When we got to the ER the same “hospital” doctor who had seen her the previous night was again on duty, and he quickly advised me that Mom had refused Rehab so nothing else could be done for her.

I looked at him and said “HOLD ON”, turned to Mom and ask her if she knew what rehab was. She said it was a nursing home and she wasn’t going there, I looked back at the doctor and asked “why didn’t you explain to her what Rehab meant?” He completely ignored me, turned around, walked off and had the nurse get the papers ready for the transfer to the Rehab center.

Our second experience was with the same doctor who, while Mom was in the hospital, looked at me and began talking in medical terms about her condition. She looked up at him and asked him to further explain something he was talking about. He proceeded to pat her on the arm and said “Don’t worry honey, you will forget it before I get out of the room.” My blood was boiling by this time (of which I’m sure he could tell) but he left the room. I called her Internist, who does listen to both patients and the caregiver, and from then on we had a different “hospital” doctor. Seems this group of Internists don’t make hospital rounds, they just have a contract with a group that does nothing but see patients in the hospital. I also got the name and address for the supervisor of the “hospital” doctor, and I proceeded to write a letter explaining in detail what type of treatment patients received while under his care. I truly feel if a doctor can’t treat a patient with respect and answer questions to alleviate the fears of family members, then perhaps he or she should enter a different profession.

Our latest has been with the cardiologist who wants to “shock” Mom’s heart to get it back into rhythm but yet refuses to go into much detail with either of us. He looks right through me as if I don’t exist. He had prescribed Coumadin for her, and when I questioned the dosage (I’m on Coumadin and have been for over 10 years so I do know about it) he informed me that HE knew what was best for her. Mom took Coumadin for 5 days when the first bloodwork was done, and her blood was extremely thin. We stopped the Coumadin immediately, but when they repeated the blood work 2 days later her blood was even thinner than before. The cardiologist accused me–to the nurse–of still giving her the Coumadin to which the nurse responded with the explanation that I had not given her any since the day of the first blood work. I have tried to talk to him about this “shocking” of her heart and cannot get him or his nurse to talk to Mom or myself. Yet when we call her Internist he will call us back and talk to me for as long as it takes to help us understand what is needed to be done and why. He treats both of us with dignity and respect.

Why are some Doctors so nice and take what their patients have little of – TIME – to calm our fears and explain procedures, while others don’t seem to care about the patient or the caregiver. So many talk down to us or won’t explain what tests are necessary, why are they necessary and what difference the results of the tests will make in the patient’s life. I have come to believe that some doctor’s consider themselves to be GODs, feeling that their decisions are above reproach and should never be questioned. In my opinion they are people with a special gift, and one of the responsibilities that comes with that gift is the obligation to share with both the patient and the caregiver. In our case Mom doesn’t always understand and forgets the “what, when and where” when tests are to be done. These doctors need to understand that it’s up to the caregiver to give the medicines, bring them to the appointments, and it’s up to the caregiver to explain why a test is necessary and what it’s for in words that the patient can understand. Sometimes we even have to explain it more than one time. Doctors are hindering – not helping – when they don’t keep the caregiver in the know.

Doctors of today should realize that not only are people living longer but are no longer being pushed into nursing homes at the first sign of a complication in their health. Families of loved ones are increasingly becoming proactive in the health care of their terminally ill members, and it is with these caregivers that doctors will be forced to deal as this pattern grows. It is a blessing when a family finds a physician who shows warmth from within through a hug or a gentle touch, but the least we as caregivers should expect is respect and communication which we deserve. And we’d like to think that when the doctors with whom we are dealing today are forced to sit by and watch a loved one fail, he or she receives the understanding, warmth and communication for which we now so desperately deserve.

Karen Evans