Tips for patients & families

Question and challenge and question some more!

Driving home on November 15, 2010, I heard the CBC’s medical consultant, Dr Brian Goldman speaking about when future treatment is considered “medically futile”. That, he explained, is the excuse doctors give for not providing or continuing with a patient’s treatment. However, when the CBC host asked Goldman about the basis for this diagnosis he confessed it was mostly based on gut instinct. That’s a problem for doctors, patients and families. Gut instincts can be wrong. Gut instincts may be based on bad medicine, inconsistent observations, and other variables that wouldn’t stand up to peer or legal scrutiny.

If gut instinct is an acceptable option, how do we – the public and those responsible for the care of another person – know someone isn’t just having a bad day (that could be patient or doctor), is overworked or distracted?

In our situation the doctors claimed our family member was non-responsive. Well, that could be due to the early hour they checked the patient who, because hospitals are so noisy, didn’t get a good night’s sleep or because their body clock isn’t used to being awake at that hour, or, as in our case, takes two medications at 6 am which cause drowsiness and dizziness. Two hours after medical rounds ended the nurses would greet me with the news that the patient was alert, cheerful, laughing, responsive, etc. These were two totally different observations solely because of the time of day.

On another occasion when the doctors were discouraged about the patient I asked if the fact that food and prescribed blood pressure and thyroid medication had been withheld for ten days would have any impact on energy and responsiveness? It was something they had overlooked.

When we came into the hospital, I was told it was important to monitor two sets of numbers. Those numbers would tell the doctors a lot. So we did as told and kept abreast of those figures. And it’s a good thing we did because there were times when the doctors hadn’t read the chart and didn’t know these two numbers had crashed and the patient needed an immediate blood transfusion.

Like 90 percent of the patients in our hospital, our family member was on a medical rotation that started out with five doctors. Every five weeks a doctor would see the patient again. The patient’s own doctor doesn’t do hospital rounds. I learned from the vice president of medicine that 15 years ago there was a “double cross” – her words not mine – in the local medical community which caused a rift that had never been repaired or resolved, so in our area most local doctors don’t do hospital rounds.

In theory, a doctor rotation can provide fresh opinions on a patient’s situation. In reality, a lot of time seems to be wasted bringing the incoming doctor up to speed. And then there’s a reluctance to initiate any new tests or treatments for fear of overlapping on to the next doctor’s week.

It’s not an ideal situation because some doctors are more communicative than others. One doctor only spent 10 minutes with the patient in his week. Another doctor we never saw touch the patient during her week, instead she half hid behind the bed curtain as if afraid of catching something and more or less showed up to confirm the patient was still alive.

The longer we were in hospital, the harder it became to trust. The vice president of medicine told me I asked too many questions, that my constant questioning had negatively impacted the patient’s health care (“the health care would have been better but for you”) because doctors were afraid to go into the room! She also said, “someone has to be in charge of the case and that has to be the doctor.” Fine, except that one of the doctors told me, “It’s not my role to make recommendations.” I wondered: why are you here? Someone had to look out for the patient and it became clear it had to be us.

This same doctor actively discouraged us from requesting medical investigations. When a mass was seen on an X-ray, I asked what do we do now? The response was, “nothing. What if we investigate and find something? We might open a door we don’t want opened?”

I found that an extraordinary position to take. She seemed to expect us to sit around for weeks worrying about the unknown. What if it was something that could be treated and grew worse because it wasn’t?

Twenty three days after entering the hospital the medical team decided to stop their investigations because they felt they knew the problem. For the next two months they had one theory of the illness. Then for the four months after that they switched to a second theory. Finally, six-and-a-half months after admission they found the cause of the medical problem which brought us to the hospital. All previous theories were wrong.

During those months of medical guessing, I was pressured to stop the treatments which were taking place. I felt that our family member was treated in a manner similar to how property developers get rid of an old building they don’t want to restore: let it fall into such disrepair that it’s impractical to repair.

I was expected to make a life-and-death decision without definitive details. Since they were guessing at the condition, I couldn’t, in good conscience, give in to their recommendations. I was right. As I said elsewhere on this site, if I had taken the medical advice pushed at me I would now be visiting a graveyard not a nursing home.

It’s important to ask questions. And it’s important to keep notes. We don’t know what we don’t know and many of the people working in the hospital don’t grasp how little most of us comprehend about their world, their language, their way of working. So you’re constantly lost and/or frustrated. And when information does come to you, it comes in waves and often is so shocking that you’re overwhelmed. While we think we understand, it’s only when we have time to think or try to explain the situation to someone else and they ask questions that we realize some questions we forgot to ask or how much we’ve forgotten of the conversation.

My advice: never go to a hospital unless armed with a notebook or a tape recorder, if for no other reason that it will help track the inconsistencies. At a May 7th meeting with three female hospital managers, I pulled out my tape recorder so I could remember all the information I expected was coming and share it with the family later on. The hospital site manager told me. “We have a no tape policy.” She was not prepared to waive the policy, so I reluctantly put my tape recorder away. Later, I wrote and asked her for a copy of the hospital’s policy and when it was approved by the hospital board. No such policy exists. She was not truthful with me.

This “untruth” and earlier denials by doctors as to what they told me eroded my trust in this hospital. On seven occasions, four different doctors told me a certain condition didn’t exist. So when that condition was discovered months later and I asked what happened, one doctor when to ground, while three others claimed the tests they did were never for that condition. But I could open my notebook and contradict them: you said on this date that this test was for that; you said isn’t it great about the results; etc. That made them uncomfortable.

The other thing to be concerned about is anyone who says we are in  “go forward mode”. “Go forward” is health care speak for “we’re not telling you what you want to know.” They figure if they say it enough they’ll wear you out and you’ll stop questioning them.

We were in hospital long enough for our family member to have 36 roommates. Roommate number two was our longest. One morning a doctor – not her own – walked into her room, took her off one medication and reduced the rate of another medication her doctor had prescribed. She had been ill long enough to know that didn’t seem right. Within hours she had been rushed to the ICU and her family called to come see her one last time. She lived another month.

Roommate 34 has a son who is a local pharmacist. She always knew what medications she was taking. One evening a young nurse came in with some pills. “What are these?” “They’re your evening pills, you get them every day.” “I’ve already taken mine.” “The doctor says you now take these.”

The roommate knew this wasn’t right and knew the dosage was incorrect since it was 10 times what she normally took. She asked the nurse to call the doctor. It was then the young nurse said, “Oh, I’m in the wrong room!”

Don’t be afraid to question everyone and everything. No question is too basic, too silly, too complicated, too out there. Don’t give in. Get a second opinion. I got advice from our family doctor. He is someone I trust and someone who could explain things in terms I understood. I also sent him regular reports on what was happening to the patient since GPs are generally kept out of the loop by the hospital. It’s only when a patient leaves hospital that their doctor, if they have one, gets a report.

So never stop questioning. Questions save lives.