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

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.

A Mother's love

This Valentine's I am remembering Megan and the incredible love she had for her daughter.

When I first met Megan I was extremely skeptical about her ability to care for her newly born daughter Lilly.  Megan, 17 and Todd, her boyfriend, also 17 had just brought Lily home from the hospital for the first time.  They had no home or apartment of their own, so they were "crashing" with friends.  I entered the small apartment just hours after they had been discharged. Four other people were already living in the apartment, which was scantly furnished, yet cluttered and untidy. 

My primary interest was in 4 week old Lily, so I squatted down on the floor to meet Lily, as they had no baby furniture/equipment to put her in.  She was bundled in blankets on the floor, with an oxygen tube taped to her cheek.  Lily had several issues; besides being born with a congenital brain malformation, causing certain parts of her brain not to form, she also was born with a cleft lip and palate.  The combination of the brain malformations and the cleft left her with basically a large whole for a mouth and nose and lopsided eyes which she could not see out of.  All her nutrition was through a feeding tube.  Medically she had severe seizures on a sometimes daily basis, and didn't enjoy being touched and would scream out when being held. 

The reason I was seeing Lily was that she had been given a prognosis of only weeks to live, and I distinctly remember thinking that I hoped, for Megan and Todd's sake this was true.  They were just too overwhelmed.  I left that first night thinking a lot about Megan and Todd, both high school drop outs who had enjoyed playing video games during the day and partying at night. They had unexpectedly become pregnant and decided to do the "right" thing and keep the baby.  Now they were being expected to do something super human, and care for a dying child who had a distorted face and didn't like to be cuddled or touched.

Todd didn't handle it long, and left after about a month at home.  Lily, surprisingly thrived in Megan's care. At my monthly visits, I watched Megan work like a pro, getting the tube feeds ready, administering seizure medications, etc.  Even when she'd been up all night due to Lily's seizures, she spoke to Lily as only a mother could; gently, lovingly, and sweet.  The two of them had moved from one friends apartment to another.  Although different locations their "home" always looked about the same - always other teenagers at my visits, hanging out playing video games, always evidence of fast food meals, cigarettes and alcohol. But also just as consistent was Megan paying attention to Lily, asking about milestones and telling about little victories in Lily's head strength and cognition. I could tell when Megan looked at Lily she only saw beauty and possibility. 

Lily lived just past her 1st birthday.... Her death was tragic, not because she suffered or  had pain as she died, but because over the course of the year, Megan had fallen head over heals in love with Lily.  The immature teenager I first met had been transformed by love to become a wise responsible woman.  Megan embodied the kind of love that "always protects, always trusts, always hopes, always perseveres."  

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.

Night Visitor

Blake's mom had been sick since he was born. She was diagnosed with lung cancer right as he came into the world. She went through very aggressive therapy and unfortunately began having strokes as well. Each stroke seemed to take part of her person-hood. Her husband and parents would work tirelessly to help her regain function to undergo more chemo, and then a new stroke would occur.

When I finally met Blake's mom, she had just had her most debilitating stroke. Unable to communicate reliably, her arms and legs were contracted, so that any sips or bites were hand fed to her. She often had a blank stare leaving me to wonder if she was still in there, but the family was determined to keep her living for Blake, her 4 year old son.

She was at our hospice house for many weeks, her husband with her at night, her mom with her in the day.

This particular night Blake had spent time during the day visiting his mom, and was at home with his grandmother. Ready for their nightly routine Blake's grandmother began looking for him, to have him call the hospice house to say goodnight to his Mom.

"Blake" she called, "time to call your mom", repeating this several minutes before Blake finally reappeared. "Blake" she then scolded, "why didn't you coming when I called, you love calling your mom." Blake grinned and told his grandmother "No", leaving her aghast at his indolence.

He then explained, "I don't need to call tonight, because she came to see me, she told me goodnight and that she loves me"

The grandmother was now quite alarmed, calling the hospice house. Her fears realized as she learned her daughter had indeed died just a bit earlier, the husband having not even had time to call yet.

Another unexplainable moment in the world of Hospice and Palliative Care

Failed Admission

When I walked into Bill's room all I knew was that he had a type of bone cancer diagnosed 3 years ago. He was in his 70's and was not at the end of his disease by any means. Just based on his cancer and functional status, he probably had another year or so to go.

Arriving at our hospice house, I assumed he must be coming for pain control, since his type of cancer is notorious for pain.

He greeted me cheerfully when I entered, introducing me to his wife and 2 children who were visiting from out of state. I noticed the daughter's hand full of crumpled tissues, eyes still moist from tears. They seemed close, hovering near Bill who seemed surprisingly calm and symptom free to have been rushed into the hospice house.

When I finally came around to the, "and what brings you to the hospice house" question, Bill stated in a matter of fact way, "I am getting weaker now, it's harder to take care of myself and I just don't feel I am contributing any longer to society, so I'm hoping you can give me something to help this go quicker"

These types of statements come up from time to time, so I just did as usual, and addressed it openly, naming his suggestion. "Well, Bill, you know we can support any symptoms you have here, pain or anxiety, etc, but I cannot give you anything to hasten your death, it's illegal actually" At this point normally people say they understand and were just joking...

However, this is when the body language changed in the room. The daughter quipped incredulously, "You can't?" while Bill asked, "Well, where in town can I go for that?" I felt everyone bristle with shock, which confused me that they were this serious.

"I am sorry, but again, there is no where in the United States that a doctor can actually administer a medication to make you die, that is euthanasia and it is illegal" I explained.

Then his son blew me away when he addressed his father, "Well Dad, do you just want to go home then? It seems that the reason we came here, to help you die, they won't do...so want to leave?"

I tried to look as if this conversation was normal, however, realizing that this entire family had come in, even flown in from out of state to have some hollywood moment of saying goodbye while I lethally injected their loved one was startling.

He did leave the house, not just because he wanted, but I couldn't justify him staying - there were no symptoms of pain, anxiety, dyspnea or even emotional pain. He was logically just done and actually didn't require any medication while he was with us transitioning back home.

So my first admission for desired euthanasia, was a failed admission. Thankfully, failed

A story for Mother's Day

The bond between mothers and kids can be strong, but this Mother's Day I'm thinking of a particular bond I witnessed that was excessive.

The patient was nearing 100, and her only son accompanied her to our inpatient facility. I've come to expect tears and displays of emotion in my line of work, so wasn't at first concerned with the overt tears that were constantly adorning the son's face.

But then I began to hear their story. Nearing 70 himself, the son had spent only 2 days apart from his mother in his entire life. They had never vacationed or taken trips, they just stayed, all those years, in the house... together. Well, except for the time in his 30's that he became so depressed with the thought that his mother could die, that he had to spend some time in a hospital on medication.

He'd say things like, "The sound of her breath is what gets me up in the morning, and what lulls me to sleep at night." He was constantly by her bed, holding her hand- even as he and she slept.

I've heard people say before, "I don't know how I'll live when xxx dies". But in this case, I believed it. I'm not sure what else this man had in his life besides his mother? Over the years he'd become enmeshed, and as she lay dying, he seemed to be dying as well.

So this mother's day, be reminded that there may be such a thing as too much....

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.

Artificial flowers

Walking around work recently I noticed a sudden new addition of plastic flowers in some of the winter lorn gardens. They weren't hard to miss, bright pink and yellow, they were planted in both pots and soil in this one particular area.  I thought to myself it was a bit uncharacteristic of our neatly manicured flower beds. 

Later that day I met one of the pediatric patients I'm caring for. It's always tough to have a young kid with a terminal disease at the hospice house.  I learned however, that this is one incredible kid. He has been able to get up to a wheel chair from time to time and get out of the room.  It was on one of these outings that he crossed paths with the patient in the room next door.  The adult patient, having been pushed outside in her hospital bed, was heard lamenting that she may not be alive to see spring.

With that perfect sweetness that can come from a child, my little patient whispered to his parents, "We should get some flowers for her, so she'll be happy."

Thus, the fake flowers appeared.  I smile at them daily, not just because they are the precursors for spring, but as a reminder of my little patient... though dying himself, he is unselfish enough to think of another's happiness. 

Unforgettable

I had one of those unexplainable moments at work this week.

We had just admitted a little baby. He was born with so many birth defects, that the doctors had told the family there was nothing to be offered.  There were problems with his brain, his eyes, his mouth, his heart, his intestines were even formed on the outside of his body. Once the decision to focus on comfort was made, the breathing tube was removed and he was transferred to our hospice house.

Mom got here 1st with him. She was 20 something and overwhelmed. As I was meeting her and the little boy, I noticed some sudden breathing changes. His color was changing to more blue/grey and I realized the worst; this little baby was dying just minutes after getting here. 

We gently interrupted our process of admission to see if she wanted to hold her son, trying not to be alarming, but letting her know that her son's breathing was slowing and it looked like he was dying.  She cuddled him. I and the nurse hugged her from each side as we sat and cried.  The breathing was a pattern of long 40 sec. pauses with just a short little gasp/gulp in between.  I listened to his heart which had almost stopped, just an occasional out of sync little beat. 

If only his father was here, but he was still enroute. Mom prayed for more time...I prayed for more time, I think all of us were praying for more time. 

And then, something I have never seen.  That baby boy's color began to pink up. I listened again to the heart, confused at the color change, and as I listened that heart beat began again, strong and fast.  Simultaneously the breathing started again, quick and fast. 

Just like that, he was back, living and breathing.  The nurse and I were flabbergasted. She whispered to his mom, "You're son's spirit must be strong, he wasn't ready to go yet."  His mom wept anew, but this time with joy.

A little miracle.  I wish I could say he went on living, or that all those malformations were healed. But in truth his heart was much too weak. Instead, his father arrived a little later. The two of them, mom and dad, spent the next hours holding him and loving him, and then just as before, the breathing changed.  This time though, they were together as a family. They ushered him out of this world together, peacefully.

Best Christmas ever?

When I first met Mr. R, who had just been told that his heart was so weak, that he'd likely die within weeks, and asked him who I could contact for a family meeting, he told me "no one".  Of his 3 children, he was estranged from them all. I pitied him, he'd clearly chosen a life of solitude.  The event that prompted his admission to the hospital was being found by his neighbor on his floor of his home. He was extremely thin, having lost  60lbs of weight this year, he was very weak and he was having a hard time breathing.

I almost left it at that, accepting that there was no one he wanted to contact, but I pressed him a bit to see if there was a glimmer of hope. Finally he teared up and weakly said I could try his daughter on the east coast. I think he was more afraid of rejection than the hope of seeing his kids again.

A few days later his daughter arrived and the tears flowed as the power of forgiveness wafted over each of them.  "Can I call Teddy?" his daughter asked, speaking of one of his sons. He bristled as the mood changed and he grunted "No".Well I thought, at least he'd been reconnected with his daughter.

Mr R. left the hospital and I lost track of him until this week, when I started back at the hospice house.  When I walked into his room I was surprised to see a room full of people. Such a contrast from the lonely, sad man I had first encountered weeks before. I asked Mr. R to introduce me to everyone. He beamed with pride as he introduced grandchildren he had recently just met and then had to pause as tears started when he came to his son.  It had been 20 years since they'd talked.

These are precisely the moments I live for in palliative care. I was a witness to healing; not a physical kind of healing, because Mr. R is still in the process of dying, but a relational healing.

It's seems backwards to say, with Mr. R on his deathbed, that this will be the best Christmas ever for them - but strangely it is.