Medical treatment and health care are not the same thing
Bangor Broadside
November 2002 - Maine Media Women 2003 First Place Award, Personal Column
In her last pre-election broadcast debate with Democratic U. S. Senate Candidate Chellie Pingree on Oct. 29, Republican U. S. Senator Susan Collins repeated the often-heard mantra: "We have the best health care system in the world." That debate was shortly after I had returned home from my dad's funeral in Ohio. Having witnessed my father's final two weeks of life in the intensive care unit of a large - and well-regarded - metropolitan hospital, I have sincere doubts about the accuracy of Collins' pronouncement.

Yes, we may, by and large, have the most advanced technology and gizmos of any industrialized country in the world. But real health care is a lot more than fancy machines and state-of-the-art lab tests. Those intense two weeks, which began for my father as an intestinal blockage and ended with his death, brought that fact home for me - hard.

Most of the lapses I saw were either procedural or administrative, but they had a profound effect on the quality of care my dad got in his final days.

For instance, there was no continuity of the nursing staff assigned to each room. We would see nurses my dad had one day working down the corridor or around the corner the next day. As a result, new nurses, and there were many, would use their first look at my dad as a baseline, unaware of subtle changes in his demeanor and condition, signs that my mother and I would spot every time we were allowed to visit (four one-hour visits each day, at mealtimes and in the evening). The nurses, male or female, did not recognize that his sudden belligerence was out of character for him, they simply put his call button out of reach. They did not see that he was clearly hallucinating, or that his speech, already affected by a stroke four years before, had suddenly gotten much worse.

There was one nurse, my father's favorite, who was the most attentive and even came to check on him when she was assigned elsewhere in the ward. After one such visit, she quietly expressed to us her concern over the possibility that my dad's kidneys were shutting down. She had to do it quietly, because we had been informed firmly on my dad's first day in that unit that nurses were not allowed to discuss the patient's condition with his family. Hospital rules, strictly enforced. Only the doctors could do that - if you could catch them.

My father did not lack for doctors attending to his various parts, each focused exclusively on his own narrow realm of responsibility. One was concerned about Dad's high white blood count, another about his high blood pressure, a third about the "stoppage" that had brought him in, yet another about the spike in his diabetic sugar count. The cardiologist signed off early, saying there was no need for his services.

I saw no evidence that these doctors made rounds together, or consulted with each other, beyond the notes they made in my dad's growing medical file.

When Mom and I raised the question of a possible new stroke, yet another specialist, a neurologist, was called in. A CAT scan was ordered, and we were told the doctor would be in the next morning. But nearly 24 hours later, that neurologist had not seen his new patient. By then my patience with hospital procedure was running thin. I called the neurologist from the nurses station. My suspicions were confirmed - the CAT scan did not show anything "recent," and, trusting the technology, he had concluded our concerns were unfounded.

I told him that when my dad had had his first stroke four years before, a CAT scan also showed nothing. This piece of anecdotal information (which should have been in his medical records) brought the doctor in within the hour. A brief examination confirmed our lay observations, and he gave us the stark prognosis: A series of mini-strokes was affecting many different parts of his body. Dad was facing, at best, nursing home care. The "at worst" pronouncement hovered unspoken over the conference table around which our family was clustered.

Most troubling, beyond dad's deteriorating medical condition, was the simple issue of food.

As an organic farmer, I am well aware of how far good nutrition could go toward fighting off an illness. And my father liked to eat - my mom's good cooking had kept him well fed for more than 60 years. Yet there he was, hooked up only to an IV of dextrose and water, continually complaining about being hungry and thirsty, and being ignored by the medical personnel who favored drugs, chemicals, and loads of machinery to fix what ailed him.

As the days passed, even after his gut had been declared up and running again, none of the attending physicians seemed at all concerned about getting some food into my dad. When we pushed the issue (nagged actually), they did eventually order a soft diet. But he gagged on a little pudding and milk, so they did some tests and cut him off again, declaring that his swallowing muscles were not functioning.

As my mom and I pieced together one symptom after another, we came to the conclusion that my father's internal systems were progressively and sequentially shutting down. We talked among ourselves about the Living Will my father had signed years before.

Yet the family physician who was supposed to oversee all this remained cheerily optimistic. All Dad needed was a stomach "peg," the doctor said, a feeding tube through his abdomen, and he would be back to his old self in no time. A feeding tube down his throat would interfere with the physical therapy Dad would need to get his swallowing muscles back up and running. The Living Will was nowhere near being implemented, he insisted.

My dad, still occasionally coherent, had agreed to have the stomach peg, the doctor said. We were not witness to that discussion, despite being at the hospital at 7 a.m. for a pre-arranged meeting to do just that. We think Dad acquiesced so readily because the doctor had told him that once that procedure was done, he would be on his way home. Dad so desperately wanted to go home, to sit in his recliner one more time, to spend one more night in his own bed.

Mom had a power of attorney, and reluctantly signed the authorization papers. But when I asked for a copy for her records (it was, after all, a legal document that she had signed), we were told that it had suddenly become part of my dad's medical record, and that we would have to get his doctor's permission to even get a copy. (We got it two days later.)

So the surgeon on Monday signed Dad up for the operation - to be performed two days later. Still Dad got just the simple IV for hydration, no other nutrition. By then he was running a fever of unknown origin. More tests were ordered to try and pinpoint the cause.

With no food in his system for so long, his body had nothing to use to fight an infection. I asked the doctor if it was wise to operate on my dad while he was running a fever. He said no problem.

Dad seemed to come through the operation OK. He woke up that afternoon, and understood groggily that the operation was over. So he quite logically told Mom to bring him his shoes so he could go home. He was quite upset when she told him she couldn't do that just yet.

The surgeon said they couldn't start feeding dad through the "peg" until the next day. Yet another day without nourishment. It was now two weeks since he had had a real meal.

At 11:35 the next morning, the doctor signed the order for the thick liquid food. Dad was resting fitfully, still a bit sedated, when we left at 1 p.m. The nurse said the food was on its way up from the cafeteria.

When we got back in at 5 p.m., he had still not been fed.

I hit the roof. I ranted to his nurse, who explained that food service had 500 other patients to feed first and they would get to him when they could. I said they hadn't gotten to him after lunch, after they had fed 500 patients that meal, so that excuse wasn't good enough. The nurse called food service. They ignored him. The nurse went on break (which always happened within minutes of our appearance). I waited 10 minutes, ranted at the nurse covering for him. She called food service. They ignored her. I waited 10 more minutes, ranted again, finally demanded that the surgeon be called. He was paged, he never answered the page. Meanwhile, to everyone who passed by the nurses station and asked if they could help me, I loudly proclaimed that I was trying to get some food into my dad, who had not been fed for 14 days, and was the hospital trying to starve him to death, and how was it that food service could overrule a doctor's order, and get around to feeding someone only if and when they felt like it.

You get the idea.

Finally, yet another nurse had me talk to a dietary supervisor, who said she would be right up with Dad's meal. We waited some more. Fifteen minutes later, the charge nurse got a call from Food Services, asking about two conflicting doctor's orders. That was clarified, another promise was made to bring the food right up.

Finally, at 6:30 p.m., the thick liquid was delivered, the pump was activated, and my dad started getting the first nutrition he had had in two weeks (except for the little bit of pudding that he choked on the week before).

That night, Dad's fever spiked to 104 degrees. He was still hot when we came in at 9 a.m. He was asleep but no longer moaning or agitated. He had a full belly, and appeared content. Mom said it looked to her more like he was in a coma. We left at 10:05. The hospital called the house at 10:30 and said we should come back in.

Dad was gone. He had simply stopped breathing, and his heart followed shortly thereafter. They had honored his Living Will. Dad had died of a massive infection of unknown origin. The young resident doctor who broke the news to us told us that such fatal infections were common among patients who had been in the ICU for so long.

I was astonished at her matter-of-fact complacency.

It was probably for the best. My dad would have hated being helpless in a nursing home. He would have begged my mother every day to take him home.

But I can't help but think my dad's last days on earth would have been better, on a human level, if (as is the case in some other hospitals):
  • Visiting hours were unlimited, day or night, in ICU for immediate family members.
  • Nurses were assigned to the same patients day after day, and were allowed to explain to us what was going on.
  • Doctors made rounds together, and then consulted with the family - daily.
  • Someone was assigned to look after the important issue of simple nutrition.
My dad had an astonishing amount of medical treatment the last two weeks of his life (paid mostly by Medicare). But he did not get enough health care to suit me.