Making Rounds and Oscar (2010) (5 page)

CHAPTER SIX

"The real measure of a day's heat is the length of a sleeping cat."

CHARLES J. BRADY

WHEN A PATIENT IS TERMINAL, DOCTORS WILL TALK
about limiting care. These conversations go beyond discussions about CPR and whether or not to resuscitate the patient if his heart stops or breathing fails. In most cases, these conversations involve difficult questions about withholding tests and treatments, and whether further medical care should be limited to comfort care.

In cases where the patient has a terminal illness such as cancer, comfort-care discussions are relatively concrete. A patient often has pain or nausea. She may be losing weight rapidly and finds she no longer has an appetite. She may be yellow from jaundice. At times, her organs might even be failing. As difficult as all this is, these signs and symptoms are concrete; it's easy for a physician to talk about them with family members. The idea of treating further pain, even at the expense of length of life, is acceptable to most people. It's what we do when there are no other treatments to offer.

The same cannot be said for dementia.

Although diseases such as Alzheimer's are also considered terminal, they manifest themselves much more slowly. Like erosion that changes the landscape of a beach, the effects of these diseases are measured over months and years rather than days. Because it's usually not pain or discomfort that the patient is suffering, the discussions are more complex and ethically abstract. Care providers and families are forced to grapple with decisions like withholding antibiotics for a potentially curable pneumonia or deciding when it's no longer appropriate to conduct further diagnostic testing for an everyday condition like anemia or weight loss. In turn, doctors must also grapple with the question of whether a diagnostic workup for an everyday problem makes sense. Will I do anything even if the patient has cancer or some other disease? If not, why order the test?

Where Alzheimer's is concerned the roller-coaster ride of acute illnesses followed by partial recoveries can also leave families with a false sense of hope. I've had family members tell me, "If we can just cure the pneumonia, I know Mom will get better." "If we can just get Dad over this hump, I'm sure we'll see some progress." Families become preoccupied with the notion that if the patient is sent to the hospital and cured of his pneumonia (or his staph infection, or his broken hip), he'll eventually be healed. Lost is the fact that the chronic disease progresses steadily despite the recovery from the acute event, leaving the patient considerably weaker and less prepared to deal with the next challenge.

But finding a place to draw the line in patients with dementia can become challenging and fraught with ethical dilemmas for both the next of kin and the health care provider. It was that way with Frank and Ruth Rubenstein.

"
DR. DOSA,
I need you to see my wife right now."

The assertiveness in Frank's voice sent Oscar, resting peacefully on the countertop, scurrying for cover. He found it under the desk between Mary's legs. If I had been quicker, I very well might have joined him.

"What can I help you with, Mr. Rubenstein?"

"It's Ruth. She's more confused today than she was yesterday. And she's not eating. I'm worried about her."

"Let me finish with a few things here at the desk and I'll be down in a minute."

My response was met with a glare and for a moment, I thought he might wait at the desk for me to finish whatever it was I had to do, but he turned away eventually, muttering something under his breath. I had to remind myself that he was concerned about his wife and that his concern was manifesting itself as, well, old-man grumpiness.

"So, do you want to tell me what this is all about?" I asked, turning to Mary as he disappeared.

"Ruth's not doing so well lately, David. She's not eating and she's dropped a few pounds. I suppose he's worried that we're not taking her weight loss seriously enough."

"How much weight are we talking about?"

"About ten pounds."

I frowned. The irony is that so many of my patients could
stand
to lose ten pounds to help with their diabetes, hypertension, or cholesterol but not Mrs. Rubenstein. The 5'2" lady was probably 110 pounds sopping wet the day she entered the nursing home. Ten pounds was a big deal.

"Do you think anything else is going on?"

Mary shrugged. "I suppose anything is possible, but I honestly think her dementia is just getting worse. By the way, he's asked for a referral to a gastroenterologist. He's worried she has colon cancer."

In a healthy patient, the idea of seeing a gastroenterologist for a colonoscopy to evaluate weight loss would certainly be indicated, but with Ruth's rapid mental decline, the prospect of subjecting her to multiple tests and procedures was probably not in her best interests.

"Have we started any discussions with Frank about limiting his wife's care?"

"David, I don't get hazard pay here."

I sighed as I looked at Oscar curled up in a ball in a nook under the desk.

"You got any space down there for me?"

"Nice try, David. I talked to him last time. It's your turn to go talk to the man."

MY FIRST MEETING
with the Rubensteins had ended so badly, I was a little surprised when I saw them return. Frank had been angry and Ruth was scared--a classic tag team of denial. I suspect that they went to other doctors with the hope of finding a different answer. That's common enough: I'd probably do the same. Perhaps they simply decided not to deal with it at all. But burying your head in the sand only works for so long. After about a year, they returned to my office and became regulars.

For a while, their visits to the clinic were positive. With each subsequent appointment, the couple seemed to accept Ruth's diagnosis and did their best to deal with it. Then Ruth began to lose many of the social graces that masked her memory impairment. Embarrassed by her worsening power of recall, she withdrew from her friends. As a result, she became depressed. Medications for depression helped briefly, but did not curb the persistent progression of her cognitive decline. In time, Ruth struggled to keep up with her household chores. She burned meals repeatedly and forgot simple recipes. Her husband compensated by ordering out or buying prepared meals from the grocery store. When she could no longer clean, he hired a maid.

Despite her decline, it was a loving relationship, the kind we could all hope for. Frank's patience with Ruth was magnificent, a sign of a deep love that had grown over the years. When she forgot a name or a memory, he gently redirected her. He doted on her constantly, offering her a hand when she got up from a chair or his arm when they walked down the hallway. One day, about a year after they began seeing me, Frank pulled me aside as they were leaving my office. Like a young teen sheepishly buying condoms for the first time, he asked me if I had any samples for something that might help his impotence. Their love life had never been better, he explained, and he was having trouble meeting Ruth's daily sexual demands--not uncommon for a married couple when one of them has dementia. I left the office that day smiling to myself. We all like to believe that our parents and grandparents never have sex, that it's an activity reserved for the young and vibrant. Funny how little we know (or want to know).

Over time, Ruth's mental decline continued and Frank was increasingly unable to compensate for his added responsibilities in her daily care. During doctor's appointments he too appeared increasingly tired and unkempt. It was clear that taking care of his wife had become a round-the-clock job. The strain was taking its toll. Given his own decline, I gently began to suggest that Frank consider hiring full-time help or place his wife in a nursing home. I could have predicted the response.

"How dare you suggest that I put my wife in a nursing home? Does it look like I can't take care of her?" I bit my tongue and asked him to consider hiring an aide to assist him so he could leave the house from time to time. This suggestion didn't fare much better.

"Why can't Medicare pay for that? How much money do you think I have?"

Sadly, I told him that the federal health care system would not pay for custodial care of his wife but that the assistance might help keep her out of a more expensive nursing home. Then he was beside himself. "Why the hell did I pay all that money into Medicare over the years when they don't pay for anything?"

He was preaching to the choir--but it didn't change anything.

Despite the obvious financial strain, a few weeks later, Frank finally did hire an aide. Unfortunately, the additional assistance didn't help for long. Almost three years to the day after the couple had first walked into my office, I received a call from the emergency room. Ruth had pneumonia and would need to be hospitalized. Initially, she was started on antibiotics and began to improve. On the second evening of her hospital stay, however, she became extremely confused. Not knowing where she was, she got out of bed in the middle of the night and became tangled in her IV tubing. She began to walk across the hospital room and fell awkwardly to the floor. Sometime later, she was found on the floor by a nurse's aide. X-rays followed, revealing that she had broken her hip and would require surgery.

Things quickly went from bad to worse. During recovery following surgery, Ruth suffered a pulmonary embolus and became even less stable. Her blood pressure became tenuous and her breathing became labored. As she became increasingly short of breath, I sat with Frank, asking him to consider options for her care. I told him that if things continued, she would require a tube to help her breathe, something she had once told me in the office that she would not want. I suggested to him that it was okay to consider letting her go. We would take care of her and ensure that she did not die in pain.

My entreaties fell on deaf ears.

A tube was placed down her throat to help her breathe and she was transferred to an intensive care unit. Several weeks later, she finally did improve, vindicating Frank's staunch support. Nevertheless, Ruth had been left weak to the point where she could no longer get out of bed, let alone walk. After discussions with her husband, she was transferred to Steere House.

RUTH WAS ASLEEP IN BED
, quietly snoring, when I entered her room a few minutes after my latest run-in with Frank. He was in the recliner beside her, his own eyes closed. Evidently, the bravado displayed at the front desk had taken a toll. I pulled up a chair between them and sat down. Under other circumstances, I might have left them alone to their dream worlds, but Frank's sense of urgency notwithstanding, we had several important issues to discuss. I gently nudged him and he startled for a second before opening a single eye. He grumbled something under his breath before sitting up.

"So, what's going on, Mr. Rubenstein?" I asked.

"Look at her, Dr. Dosa. She's skin and bone. I come in here every day at lunchtime to feed her so I can make sure she eats her meal. Lately, I can't get her to eat anything anymore."

He pointed to a mostly uneaten grilled cheese sandwich on a lunch tray in the corner of the room. A container of applesauce also appeared untouched.

"Mr. Rubenstein, your wife might be losing weight now because of her dementia."

"Doctor, if you are here to ask me to consider putting my wife on hospice again, I don't want to hear it. We've been down that road before."

"This isn't about whether or not your wife belongs on hospice."

He stared at me with a quiet determination. He was the defender at the gates of her castle and I was the leader of the invading horde. There would be no agreement or compromise. I knew that and for the time being, that was all right. Ruth probably wasn't ready for hospice, but there was another pressing issue to discuss. Did it make sense to order a number of tests and procedures to determine why she was losing weight?

I tried a different tack.

"Frank, how do you think your wife is doing?" I asked.

The question surprised him. He was expecting another assault on his castle gates.

"Dr. Dosa, I know my wife has a terrible disease, but I'm not ready to give up on her. She still loves me and my time with her is important."

I considered my next statement carefully.

"I know you care deeply about your wife, but I should tell you what I think. You talked with Mary earlier about wanting Ruth to see a gastroenterologist for her weight loss. I don't think sending her to a specialist is going to change anything. She's just going to end up getting a bunch of tests. Some of those tests have the potential to be quite uncomfortable. Besides, even if those tests show that she has cancer, Frank, you know as well as I do that we wouldn't consider doing anything aggressive. She wouldn't tolerate it."

The anger returned to Frank's face. I had stepped over the line and he responded accordingly.

"Doctor, I want you to do everything for my wife that you would want for your wife or your own children. If her heart stops, I want you to restart it. If she gets that pneumonia again, I want you to send her to the hospital. If she needs a specialist, I want you to send her. Am I being clear?"

"Crystal clear, Mr. Rubenstein."

I got up to leave the room and made my way to the door. When I got to the threshold, I looked back at him and his sleeping wife. Against my better judgment, I left Frank with one last parting thought.

"Frank, I know you love your wife."

He looked up at me and I could see the anger draining from his face.

I paused for a moment. I didn't know how far I could take it.

"Sometimes, the deepest act of love is letting go," I said. "Don't make this about fighting with me or any of the other staff. Think about Ruth."

I FOUND MARY WAITING
when I returned to the front desk. Oscar had also returned to his more exposed position and was once again asleep.

"How did it go?" she asked.

"Status quo," I replied.