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.

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.

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

Dilemmas with pain

I love being able to treat people’s pain without worrying too much about addiction.  This benefit of palliative medicine is certainly important especially in the pain phobic, escapist society we live in.  My patients usually won’t live long enough and/or have such very real pathology (i.e. cancer) that misuse of medications is quite low.

This, however, doesn't account for patients who have very real addictions and then unfortunately find themselves with a terminal diagnosis on hospice. Suddenly the ease of treating someone’s pain morphs into quite a challenging dilemma.

For instance, one of the tenants of palliative care is to relieve suffering. Thus, ready access to opioids is essential.  A regular doctor would have qualms about filling prescriptions early for pain medications or escalating doses rapidly.  But in hospice, if a patient is dying, sometimes doses easily escalate in an attempt to provide comfort and relief of suffering. 

What to do then, when you suspect inappropriate use?  Does someone with a past or even present addiction not “deserve” medications for pain? Can I refuse? Should I set limits? Refusal certainly goes against the grain of a specialty tasked with providing excellent pain control!

We certainly don’t interfere with addictions to other substances – On hospice, smokers generally keep smoking and alcoholics keep drinking…in fact it’s expected that in the last weeks of life people aren't going to change life long habits.  Is it different then for other substances?

Going deeper philosophically I could even argue that the misuse of opioids generally starts from the ability of those substances to numb an incredible emotional pain… it’s an escape, a postponement of dealing with the hurt, etc.  The qualm then is that this desire to escape can happen in very average people who are suddenly struck with a terminal diagnosis.  It isn't unusual to treat a 40 year old woman with breast cancer who has what we coin “existential” pain because she can’t deal with leaving her 3 small children. This type of patient often has a pattern of escalating doses of morphine to escape that reality.  Is that misuse of opioids? Or is it her way of dealing with dying? I don’t know of any physician who would refuse her medications…. So why then if the escape from pain started earlier and someone got labeled an addict, do we suddenly have issues with treating their long standing existential pain?

It’s certainly a topic worth exploring and one I admit not knowing all the answers for.  I suppose for now, I will continue to treat all pain, being aware of addictions and escapism and using the safest medications available, in an attempt to minimize risk of harm

Katie's Choice

I've seen prolonged dying many times. Usually there is a good explanation, the individual is young or has kids they don't want to leave.  Sometimes it's an unresolved conflict or an irrational fear of dying. Regardless of the reason, if a reason, the process becomes extremely tough on the family.

One of the tougher ones for me to explain happened in a young woman I cared for recently named Katie.  Although there were young kids involved, they had been removed from the family. Those by Katie's bedside each day were her mother, brother's and sisters. Katie had fought cancer for several years, far outliving her original prognosis.

While I had explained initially to family I supposed this would be long and hard - They and I weren't prepared for the 4 weeks without any food or water that Katie laid in our hospice bed.  She was incredibly thin, bones outlining her face and jaw, eyes sunken. She was rarely awake, but when so, in terrible agony, not from physical pain but internal fighting and issues never dealt with.

Her family was devout, cradling her in bed, attending to any sigh or moan, never leaving her side. Each morning they looked at me with strained eyes and weary souls hoping I would tell them she would die that day.  But each day Katie's un-readiness allowed her body to somehow exist past the point of human understanding.

Her final week she had stopped making any urine. Her blood pressure, barely palpable stayed around 50/30. Her toes black from no circulation, and the blood pooling we normally see after death called liver mortis was present despite the fact that she hadn't actually died.  She was no longer able to move or talk or moan. It was as if her physical body began it's decomposition in lieu of her utter refusal to actually die.

The family became more and more erratic in their exhaustion. Telling her often that it was okay for her to die. In one unbelievable moment, as this living corpse lay with family in tears surrounding her, they began to angrily plead, "Katie, you must go, let go... it's okay, it's time to die...we can't take this any more, won't you please just die!" It was in those moments that a defiantly strong voice suddenly echoed gutturally from the skeletal figure shaking the room to silence, "NO!!!!"

Don't tell me that Katie's prolonged dying wasn't in her control. I am not sure how to envision her intangible will, but it was physically keeping her "here".  In medicine we can't measure will or fight or some one's "spirit" but one thing I've come to learn, it can play a huge role in the way we leave this earth.

While her death was prolonged and many would say full of suffering, I must respect that it truly was Katie's choice. And had we interfered medically, shortening her time, like so many had pleaded for us to do, ultimately we would have disrespected that choice. Katie of course finally did die, likely against her will, a few days after her outburst.

Suffering

I think one of the harder things to do is watch someone suffer. I'm not sure if it's because it causes us to suffer ourselves, or if it just brings up fears of ourselves being in that situation.

Recently I had a patient with a complicated cancer. She was at our hospice house for an extended time, but clearly began to lose her fight. In those rough days of her body's transition to dying, she had a lot of symptoms. She was nauseated constantly, with dry heaves frequently, and had pain with any type of movement. Despite all the pills, liquids or IV's that I suggested for her, she wanted nothing.

Nurses began to fret and suggest maybe I could do something about this refusal of medications. "She's just lying in there, suffering..." Suggestions ranged from placing a pain patch, to convincing her of the necessity for a subcutaneous site so that medications could be given, despite her refusal.

While the intentions were good, I had to step back a minute.

Who am I to decide for someone the way they should die? While most would think suffering was indicative of a 'bad' death, the reality is for some, this is exactly the way they want to go. The number one priority for me as a palliative care physician is not to treat someone the way I want to be treated, or the way YOU want them to be treated, but to treat them the way THEY want to be treated.

Although very difficult, I respected my patient enough to not cajole, convince, persuade or trick her into pain medicine. With every frown, moan or grimace I winced, but in allowing her to do things her way, I witnessed an amazing ability she had to stay present, in mind and spirit, till the last moments of her life.

She died smiling. Her journey may not have been my choice, but it needed to be hers.

No one should...

I interacted with an incredible kid recently at the House. Innocent and respectful, he was not intimidated by authority and extremely kind to all he encountered.  I think this interaction sums it up: when meeting him at hospice with his mom, who was dying with cancer, he interrupted my solemn conversation to ask if we had any microwaves in the room to pop his marsh-mellow topped popcorn that he just couldn’t wait to eat.

As we interacted over the next days, I began to compile a list of things he’d gone through that seemed absolutely unfair.

No kid should have a mom be diagnosed with cancer
No kid should have to stay up all night walking her up and down their stairs at home, at least 20 times, because she’s too restless to know any better.
No kid should have to watch his mom swing at the air and shove people away from delirium
No kid should have to experience telling their mom “I love you” only to hear “I hate you” back with a blank unknowing stare; even if it is the liver failure causing her to be out of her mind.
No kid should have to wake up every hour of the night to look at the clock and wonder if his mother was still alive.
No kid should have to sit at the bedside of his dying mother, wondering why she made strange sounds, why her feet were blue and whether she could still hear him say “don’t go”.

I wish my list ended here. But tragically I must add:

No kid should go through all that, have a mother die, and then 36 hours later have his father die to. 

Anything more frightening?

It's hard to imagine a worse reality. She had contracted some sort of encephalitis. Absolutely regular 23 year old, living life fully, when suddenly she became ill with headache, sleepiness and fevers. By the time she was admitted to the hospital, most of her organs were failing. Her kidneys shut down, requiring dialysis and her liver began to fail.

Much more troubling than these major organ problems however, was the damage occurring in her brain. After the onslaught to her body was over, she was blind and hearing impaired. Even the typical sensations of touch seemed to be misinterpreted now by her brain.

She was in the hospital for months. Nothing improved.

Can you imagine what reality was to her? I try, and it's horrifying; To not be able to communicate with anyone... to be in constant darkness and if sound does filter in, the brain can't understand what the sound means!

It was in this condition that I met her. Sitting in her room at the hospice house, she'd all of sudden cry out, "Is anyone there? Can you hear me? Help me, please! I'm here, I'm here..." But none of my words or even touch seemed to register.  She was in complete isolation. I wasn't surprised then when the crying out turned to, "If no one's out there, I wish I could just have a gun,  and let this be over"

I had no gun. But mercifully the family had, after months of this crying out, opted not to continue dialysis or treat new infections. It was only a matter of time then before her wish to no longer be living in such a frightening reality would be over.

For the record: If I am ever blind and deaf and trapped in my brain, please don't try to keep me alive

Tension

I had a hour long drive to go visit a new home hospice patient.  She lives with her family in a very small town. I passed many farm fields covered with ice and snow to get to the town.  I found her street and recognized her home easily. I had already heard that this little town had surprised she and her family by building them a new home.

Jackie was diagnosed with lymphoma last year, and has had the most aggressive therapy available for this aggressive form. She and her husband had bought an old farm house and were in the process of fixing it up when she was diagnosed.  While gone for 3 months, away from her kids, getting a bone marrow transplant, the town had volunteered and built a magnificent home.

I walked up to the front, passing bikes strewn in the snow and rubber balls hidden behind bushes. I felt myself growing sad just walking to the door.

Jackie is my age, with 5 children, ages 2 1/2 up to 12.  MY AGE and dying.

Jackie's husband welcomed me in, to more Christmas chaos with decorations and wrapping paper around.  Jackie was able to walk out to greet me for just a few minutes before retiring to bed from exhaustion and nausea.  Her hair short, having just started to grow back after chemo. Face thin, having lost 50 lbs.

It was a hard visit. For the first time, I sensed tremendous distrust in me as a young hospice physician. Perhaps it was anger on her part at my life, or just the weariness of fighting so hard to beat something impossible to beat.  Regardless, there was a lot of tension in that house.

It's so different when I work with young patients vs. older one's. Young patients often keep hoping for miracles. Comments her husband made led me to believe that they both are still expecting she'll be cured, even with all medicines now stopped.  There's often more escapism in young people as well.  When it gets so hard to face the reality of being a mother of 5 and dying, it becomes easier to take medicines to go to sleep.  She's avoiding the pain, with drugs, but meanwhile loosing the precious time she has left with her family living.

Usually I leave visits feeling good, but not this day.  Passing the bikes again, I had a heavy heart.

Pain vs Harm

There is one thing, I think most of us would agree is tough to deal with- pain.  Although in medicine we say it is the 5th vital sign, it remains largely a mystery.  What makes it so difficult is it's subjective nature.  Doctors like objective findings; tests, numbers, X-rays.  When we must trust the experience of the patient only, it is uncomfortable.

There is however, a certain attitude we Americans have adopted about pain that I'm not sure I agree with.  Like our demand for immediate gratification, and sense of entitlement, somewhere along the way we've decided that we cannot experience pain.

There are ramifications to this mind set that ricochet thru every aspect of society. I saw it last month in OB, and I've seen it this week hourly in my orthopedics rotation. In an argument with a patient who is trying to get disability status from the back pain she's incurred over years of working with heavy machinery, the doctor I was working with said simply. "Look, your back condition is painful, but it is not dangerous.  Going back to work will not harm you" This patient could not separate the two - pain from harm.  In her mind to have pain was to have injury.  But in fact, it's not the same-

This is where society has erred- to link these concepts together.  IF we assume pain is damaging, and injurious, we avoid it at all costs, and will not tolerate it.  Thus our tendency to self medicate and avoid pain - with alcohol, drugs, and other bad habits.

One huge problem with the idea that pain must be avoided - is the impossibility of this. Thus, one is already doomed to failure in pursuit of never experiencing pain. There is something necessary about pain as well --it teaches. Child psychologists remind us to let infants stumble into tables and touch a flame- because guess what, they learn not to do it again.

All that said, should pain be treated? Of course. The caveat is that a residual amount of pain is okay, and expected.  Once my chronic pain patients with arthritis, injuries, etc realize that we can't take away the pain, just make it bearable - they do great.  It's those who continue to strive for a pain free existence that fail, and live out miserable lives.

Pain won't kill us.  It sounds harsh, but it's true. I'll continue to try and minimize pain for my patients, and myself.  But I also want to adjust mind sets, and separate pain from injury. The two may both occur in an event, but pain itself does not injure. Finally, pain is allowed, and will occur simply because we are human beings. So, pass the word along: PAIN HAPPENS