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

Poignant Timing

I have a slight fascination with the events leading up to the actual timing of someone's death. Some may call this recall bias, in other words, I simply just remember the one's that are unique giving me a false sense of the reality relating to the timing of death. This is likely true, but I still find certain narrative's inspiring.

In the last several weeks I have had several of these perfectly timed deaths. One family feared their father might die on his daughter's birthday. They had discussed this with him while he was still lucid. The birthday arrived, and he was actively dying. Perhaps he had a choice in the matter, because he hung on until 3 hours past midnight, just making it past the birthday date.

Another patient, an elderly woman known for her vindictive controlling behavior, seemed to be punishing her daughter,who had an overseas trip that had been planned for over a year. The two had the kind of relationship that was tolerant at times but bitter mostly. During an argument, the daughter told her mother, who seemed still to have months left to live, that she was leaving for her trip no matter what.  Looking from the outside, it seemed the mother wanted to put this to the test, suddenly taking a turn for the worse and dying on the eve of her daughter's big trip. The daughter kept her word, leaving for the airport, and thus missing her mother's graveside service.

This week I experienced a new one for me. The patient was a young 96, having lived in the same home on her family ranch/farm for the past 71 years. Her only son had adopted the responsibilities of the farm after the death of her husband. I assume it was a combination of a mild stroke and leaving her home that started the slide into a dying state.
The conversation they had went like this:

 "I don't think I've got long to live" she whispered to her quiet natured son.
He sat with hat in hand, well worn jeans and work boots. After a moment he spoke up, "Well Mom, I think we're gonna start cutting wheat this week"
She seemed to mull this over and made her deceleration, "I'll wait till the wheat's baled then"
The week came and went and things started to get a bit rough with her transition. I think she was trying to hold on. The wheat cutting then finished, so after some prompting from us, her son let her know the wheat was baled... and she became peaceful and died soon after.

The lesson for me in all this is that while we may not always understand the timing surrounding someone's death, often there seems to be a reason important enough for that individual to either speed things up or slow things down.

An unlikely artist

When we got the call that Cindy was coming out to the hospice house the warning was, "She's not going to last long." Cindy was in her 50's with end stage COPD.  She'd been in the hospital for weeks stuck on a machine called BiPap. They had worked on weaning her off this machine, but weren't successful and didn't feel comfortable using opioids like morphine to help her breath more comfortably.  She was frustrated and didn't want to continue to live with a mask forcing air into her lungs, stuck in a bed in a nursing home or hospital, so she decided to come to the hospice house.

Cindy was extremely anxious when I met her, years of smoking had left her thin and much older than her stated age. Her eyes had that scared, wide open look, as someone fighting for each breath. Introducing myself, I asked if she would mind if we tried a new medicine for her breathing and explained how morphine actually would ease the work her body was doing for each breath.

Within days, much to Cindy's disbelief, we had her actually off the BiPap machine and on simple oxygen through a nasal canula. Morphine had reduced the work of her lungs to the degree that she didn't require as much oxygen and wasn't in constant panic mode.

Suddenly she went from a woman who thought she had only a few hours or days left, to someone with months to live. Cindy now had another dilemma; an abundance of time to anticipate her death.

One of the things we offered to not only fill her time, but help her process her dying was art therapy. Cindy admitted she'd never done art, felt clumsy and inadequate. However over the next months, our art therapist worked with her on expressing herself.  At one of my visits I happened to mention how fun it would be to put on an art show with everything she'd been working on. The sparkle of pride in her eyes was all I needed to pass the task off to our amazing volunteer coordinator.

This was an art show like none other.  The artist sitting, oxygen tubing on, while her room was adorned with her work. We had refreshments, while friends, staff and volunteers flowed in to admire and praise the artist. Cindy beamed, a long time automobile plant worker, I know she was tickled to think of herself as an artist. When I look at her work below, I see more than the pieces; I see Cindy's peaceful face reflecting the respect, praise and love we gave her.

A fortune

One of things hospice organizations rely on is donations, especially for those of us in the non-profit world. These donations generally come by way of organized fund raisers and memorials.

One particular memorial I will not forget.  It had been a very busy day at our hospice house, several admissions and deaths. I had 2 medical students with me as well, so any spare moment was taken up teaching them little pearls of knowledge. Someone from the reception desk suddenly appeared in my periphery and motioned me saying, "Dr. C, would you have a minute to come receive a memorial up at the front".

This in itself was highly unusual, as typically families just sent memorials to us in the mail.  I must have looked confused because our receptionist  further clarified, "They asked if they could specifically present it to one of our doctors."  Now I was getting excited, speculating that this must be quite a donation!  I had visions of lottery winners being handed over sized checks, as cameras clicked and hands were shaken.

"Sure" I replied with enthusiasm, having the two medical students come with me so they could be wowed as well.  Walking down our long hallway I was trying to speculate who it could be, and feeling just a bit nervous at this unusual request.

As I rounded the corner I encountered 4 people I knew quite well; John a mechanic in his 60's and his 3 adult children. We all hugged, as I began to recall the weeks I had spent caring for John's wife. John teared up a bit when he spoke up, "We just can't say enough about the care Dorothy received here. We wanted to personally present you with this donation so you can continue the good work you all do"  His rugged grease stained hands passed me an envelope and he gave one last hug. I smiled then as he waited for me to open up their gift.

The moment I had seen that it was John, I knew that I had been foolish to dream up some giant donation. This was a family who lived in poverty, who spent everything they had on medical bills and Internet "cures" for Dorothy's cancer.

As I opened the envelope and saw the check for $25, and met the eager tear streaked faces of the family, so proud of what they had scraped together, I too cried.

Walking back down the hallway, one of the medical students who had observed this all, including my uncharacteristic display of emotion quipped, "Wow, that must have been a really big donation! How much was it?"

"A fortune" I said, and left it at that.