Bare Foot Visit

I have been told that when treating delirium, you should look for reversible causes first.  In other words, before adding in lots of medication, try to see if a simple solution exists.

One such reversible cause for delirium is hypoxia, or not getting enough oxygen to your brain. This can be a very simple thing to fix for some patients; just add oxygen.  However, this can be more difficult when the delirium is at play.

Such was the case with Ronald.  He had been diagnosed with lung cancer, and had spent a few days in our hospice home to give his disabled wife, who was also his caregiver, a break.  Ronald was just starting to show signs of the roller coaster ride of up and down moods and confusion that can happen as the body slowly begins to shut down.  He was a handful, and the staff was beginning to feel they needed a break as well.

When the nurses took him to his rural home 15 miles away after his respite stay, they made sure to alert his wife of some of the changes we were seeing, especially the new delirium and confusion that was worse when he didn't wear his oxygen. They bid he and his wife farewell until the following day's scheduled nurse visit and departed with relief.

I need to mention at this point that it was winter in Kansas.  We had recently had several inches of snow, and more was on the way.

Several hours passed of peace and quiet at the Hospice House, when all of a sudden one of the nurses heard a banging sound at the back door.  Confused on who it would be, she made her way to the back hall and opened the door.  As a blast of snow and air hit her, she squinted in the bright light, her draw dropping as she took in Ronald standing in the snow in sweatpants and bare feet.

"Nurse, you have to come now!" He said in a panicky voice. The nurse had to prioritize the multiple shocking things in front of her.  Ronald needed help, Ronald had no shoes on in a snow storm, Ronald had somehow arrived from his home 15 miles away.

That's when the nurse noticed Ronald's old pickup idling in the back parking lot. She blurted out "Ronald, what in the world is going on?" which seemed to sum up all of her concerns.

"I had to get here, my oxygen tank is broken at home.  I can't get it to work, and I absolutely need oxygen now. YOU need to come with me back to my house to fix it" Ronald explained.

Here's were delirium's irrational side comes in.  Instead of having his wife call the nurse, or he calling the nurse to work thru the problem, Ronald had run to his truck in his bare feet and driven through a snowstorm to come get a nurse.

There really was no way to persuade him of any other solution than having a nurse follow him back to his house to figure things out.

The nurse drove in her own car, and followed to make sure Ronald was safe as he made his way back to his home.  Even back at his house, he spoke in a rapid, paranoid way.  She helped him inside, and he led her to the troubled oxygen concentrator.

"You see, there, it's not working!" Ronald said flipping the switch on and off in exasperation. The nurse immediately glanced to the wall were the cord to the concentrator lay, unplugged. She calmly walked over, plugged the machine in, and the machine's whirring sound began again.

The remedy to Ronald's delirium was oxygen, which was readily available, however it was the delirium itself which prevented him from being able to help himself.

Without Work

Frankie had worked as a barber in a small town for over 40 years.  It's important to note that in a small town the barber shop has its own sub culture. Men of all ages, from all walks of life and socioeconomic status, enter on equal footing.  The barber with blades in hand, is ruler of the roost siphoning in information from gossip, secrets, and confessions of clients. The power is all his, as the morsels he collects he can choose to hold tight to or to pass on to others.

For forty years the castle was his. Others clamored for his favor to win tidbits about others. He was respected. He was independent. His job was his life.

When they found a nodule in his lung he started chemotherapy in secret.  He had listened and passed on tales of countless other peoples cancer woes and didn't want the awe filled pity that accompanied the news.

He pushed through the fatigue and side effects, never missing an day at work.

The news came that the cancer was spreading rapidly, but he continued to ignore this reality. Finally one morning he didn't have the strength to make it to work.   With no work to go to, he called hospice.  Now he was ready to die.

I met Frankie the day he enrolled with hospice.  We talked about his life, his hopes, his disease.  I cautioned him that although his weakness and fatigue were preventing him from going to work it still appeared that he had several weeks left, if not a month or so before the end.

Word got out about Frankie's cancer, the very world of information exchange that he had controlled now passed around his own tale.

Without his job, Frankie floundered. He refused visitors, he lashed out at family. He climbed so inward into himself that he'd often ignore my visits. If anything was muttered, it would be about wanting to die.

It's as if, in Frankie's eyes, 100% of  his value was in being a barber and when that was taken away there was nothing left. No amount of medication, dignity therapy, or listening could fix the suffering from loss of identity.  It was agonizing. He laid in bed, rejecting the world for over a month before he died.

I've tried to funnel the heartbreak of not being able to help Frankie into a check up of my own self value. There's got to be balance of worth that comes from both external and internal things.

If only Frankie could have acknowledged that despite not being able to go to work, he was still a father, a grandfather, a friend, and still a barber with a lifetime of stories to be shared.

Hard Things

Families that take care of dying loved ones in their homes, go through such extraordinary things. We expect illness and dying to affect us physically, but often we don't anticipate the loss of dignity. It is left to the family members to muddle through the hard things; helping a mother eat, helping a father button his shirt.

Today as I met with a family who had brought their mother to our hospice house for the last days of her life, I was reminded of how tough it is to be caregiver and child at the same time.  Each sibling spoke of separate moments that they each had, when that final line of humility was crossed.  For the daughters, their moments came in assisting their mother to shower.  A modest and proud woman who hid her protruding mass from family for years as it slowly grew and then opened, she wept with the daughters as they apologetically helped her shower. They admitted their surprise at the effects cancer had on her body, but more how sorry they were that she was humiliated to need help from them.

Her son had been spared such intimate tasks for as long as possible, until one morning it was only he that was present. His mother's bed was wet, she shivered, needing dry clothes and sheets.  Like his sisters before, he cried as he attempted to change her, her modestly and discomfort obvious as her dignity ebbed.

These are the things we forget, when we ask how things are going at home. Is it not enough, patients must wonder, to endure the physical changes of dying and have to lose dignity as well?

To take care of a dying loved one is an extraordinary thing, often a hard thing, and always a gift that must not be taken for granted.

Absolution

Faye had been dealt an over abundance of difficult things. When she was born, she was not wanted by her drug abusing mom, so her grandmother adopted her, but the seeds of being unwanted were planted.

Faye got married and had children, then her husband didn't want her and left. She eventually met her current husband and they married and another child was born. Unfortunately, along the rocky road of searching for love and being abandoned, Faye was introduced to the same companion her birth mother had found solace in - drugs.

The problem with substance abuse is that it masks not just emotional pain, but physical pain as well. When Faye started having abdominal pain and loosing weight, she and everyone around her assumed it was the drug use. For months, vague symptoms persisted, but nothing was done.

She finally came to the hospital when days had passed and she hadn't been able to eat. The pain was severe and by now she'd lost nearly 70 lbs.  I'm sure you know where this is heading. CT scans showed a mass in her liver, and further tests showed the cancer to be everywhere. Suddenly this 30 year old mother was told she only had a few weeks to live.

I met Faye at the hospice house, the paradox of sunken cheeks and thin upper body with a distended belly and fluid filled legs from her cancer were what greeted me. She was just days into the knowledge of her disease, and it showed, she wanted medications and more medications to knock her out of her reality.

Despite this, her one clear question to me during my exam reminded me that she was absolutely still processing this. Her question came after her family had stepped out. In this private moment of a patient and their doctor, she grabbed my arm as asked, "I'm embarrassed to ask, but I have to know, did my drug use cause this?"

She was asking what everyone asks when facing death at the wrong time; "Why?"  As humans we think if we can ascribe cause and effect to things, we gain some control. Often, though, the why question is laced with culpability, which is what Faye was asking.  Not only was she struggling with the question of why her life was ending, she was struggling with her role in that fact.

I had a sudden dilemma, on the one hand her drug use did have a major role in how late she presented for medical attention, potentially preventing early detection and beneficial treatment.  On the other hand, the drug use didn't actually cause her cancer.

What Faye needed from me was absolution, and though just her doctor, I gave it.  "Oh Faye...listen, you need to know that no decision you've made or action you've taken has caused this disease. It's horrible, it's ugly, it's not fair that you are in this situation, but it is absolutely not your fault."

She began to weep and just say "thank you" over and over again.

As a palliative care doctor, my role is to relieve suffering, sometimes this is done with medications, but often it is done with words. I couldn't take away the suffering related to being young, a mom, and dying with cancer, but I could certainly take away any guilt associated with her disease.

Where We Find Our Worth

It's in my nature to want to understand why some people take so long to die. Jenny was a middle aged woman who's primary cancer had spread to her brain. This is always a big deal, but more so for Jenny who prided herself in being the caretaker of the family.  A wife, mother, and career woman, she had balanced it all, keeping things organized for everyone in the family.

With the spread of the disease came trouble remembering details, or doing tasks, like operating her cell phone. Most people in desperation of loosing these key abilities would just give up. Not Jenny; though voicing her comfort and readiness to die, it was clear she was doing everything in her might to stay living.

As days turned into weeks this suspicion of actual un-readiness became clear. There were days she looked as if her transition had begun, only to rouse herself and force herself to eat a bite or two.

My last real conversation occurred a few days before she died. She complained to me of unrest, and I suspected terminal restlessness was setting in. In trying to clarify her feeling of unease, she suddenly said, "It's because I can't do anything anymore". I asked if she believed her worth as a human was based on the tasks she preformed.  "Absolutely" she said, putting as much emphasis into her response as her body would allow.

I could see now the reason for her struggle. She had defined herself by what she did, and no longer able to do things, she lost value. There was something deeper there too, as I explored with her, not only did she feel lost without being able to "do" things, she was questioning if she'd ever done enough to justify her existence.  I asked gently, "Are you able to believe that you have worth, simply by being you? Based not on doing, but on being?"  With utter despair, she shook her head no.

Like so many I meet, these big issues were left to be dealt with too late. In the next days she struggled against her bodies attempts to shut down. The nurses attempted getting family in to "give permission" for her to go, and her minister came to speak calming words. Ultimately, though, she didn't want to die.

I've seen the last minutes of dying, and she by far did it the slowest I've seen. Even when air stopped being exchanged, it was as if she willed herself to keep breathing - minutes of going through the motion without actual breath. Then when we felt surely she was gone, a muscle in her throat strained with spasm in an effort to mimic breathing for several more minutes.

The unrest we all felt in that room, the nurses, family, etc, was troubling. I wish Jenny had believed in her inherent worth, it would have made dying more peaceful.

A Good Death

What is a good death anyway? The word in Greek for good is "eu" and the word for death is "thanatos", so in Greek this becomes "euthanasia".  But "eu" also means easy - thus, often people think of a good death being synonymous with an easy death.  Of course, in our current culture, that word euthanasia is steeped with controversy and moral pull, leaving very little that is easy about the word.

I think for many, the idea of a good death does encompass something about easy; no pain, no suffering, no struggle.

This was not the case for Frank. Although this elderly gentleman had professed a readiness to die when he entered our hospice house, newly diagnosed with cancer, certain clues pointed elsewhere.  After about a week of avoiding sleep at all cost, I knew something was amiss. His avoidance of slumber was classic, he refused to get into his bed and spent 24 hrs a day in a recliner. He also, like my own 3 year old at home trying to avoid sleep, would continue to talk even when no one was in the room. The incessant speech was certainly meant to keep his brain from nodding off.

I headed into the room, with a mystery to solve. He had professed no fear in dying, so why did his behavior scream avoidance?  I played the normalcy card, speaking of patients in the past who had been afraid to sleep because they assumed they would then die. This struck a nerve, and in my waiting silence he confessed.

"I admit it. I am afraid...." then a long pause, and finished with "afraid of it being too easy." What came next were tears, for the fear wasn't in death, but in a death without struggle.  He felt that dying in his sleep would be a disaster, that dying with pain medicine easing his struggle to breath would be cowardly.  Then he told a story.

He was a veteran in WWII and had rescued a man who had been burnt, ending up injuring himself in the process. He found himself in a military hospital next to this man he rescued. Charred, with flesh falling off, this man looked Frank in the eye and told him, "You SOB, you better survive and be here in the morning".  Frank made the same valiant demand back. The entire night, he heard the moans and groans and cries of the burnt man. As morning dawned the agony filled cries ceased and nurses came, pulling a sheet over the mans face as he took his last breath.

Frank looked at me, and no further words needed to be said. That was a good death to Frank.  That was the noble death Frank was looking for.

The story and Frank's personal ideal of what "eu  thanatos" was for him, explained a lot of the decisions he'd been making while in our hospice house. He felt very guilty in the revelation. I reminded him that our job isn't necessarily to change who people are, but simply listen so we can understand who they are.

What's your definition of a good death? Is it easy? Is it noble? Is it going out with a fight? Something to ponder.

Art work:  The Soldier (1538) from "The Dance of Death" by Hans Holbein

War Baggage

There have been books and lectures written on veterans and the dying process.  I have witnessed a variety of cases.  The issue has to do with baggage left unprocessed. These are men and women who pushed down their experiences and suddenly on their death bed, the strength to suppress is gone and the issues come catapulting to the surface.  Practically this takes on two forms - either hallucinations and delirium that is out of control, or tears and weeping that won't stop.  The former is an attempt to still suppress, the later is the cleansing experience of finally dealing with the memories.

I've been meeting daily with a patient going through this catharsis.  He served in WWII, never spoke of his past and prided himself for being a "man's man" and showing no emotion. Suddenly he has found himself crying constantly. Everything out of his mouth comes back to war. He admitted to direct responsibility of the death of men, which has haunted him throughout his life. Today he said something that put in all in context.

My patient was injured in the war and therefor exited active duty by way of a hospital. The General in command of the hospital met with he and 4 others who were also injured to honor them with medals, as well as encourage them.  The final words he received from this high ranking official were, "Remember, the first time you ask for help...you've lost"

Through tears at this retelling, my patient said "and I never did ask for help"

Startling to me, this message of strength equated with self reliance. It explains a lot of the man he became and the man who sits now unable to stop the tears.

The message I share with him today is the opposite; that I see strength and courage in his ability to work through his past. That what he is doing now takes more of a "man" than hiding it away. That the tears are the evidence of healing and wholeness.  I think the first time you ask for help...you've won!

image from PBS.  Copyright © 2007 WETA, Washington, DC and American Lives II Film Project, LLC. All rights reserved