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.

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

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.

Guppy Breathing

There’s a type of breathing when people die called agonal respirations.  The best way to describe this is a deep, regular breathing that often involves movement of the jaw and shoulders.  The jaw movement is what I almost always notice.  If you think of it, normally when we breathe your jaw doesn’t move at all. This forward thrust of the jaw is an ominous sign, and usually means death is minutes to hours away.  Another name for this type of breathing is guppy breathing, named I suppose for the movement fish make when trying to get air out of water. We have pamphlets in all the rooms explaining these things for families,so they can also recognize the signs of the dying process.

All this is background for a funny story.  We had a lady here at the house that was very curious about the dying process. She decided to read the pamphlet too, so she could be prepared for these changes in her body.  That’s understandable, but she went even a step further. The nurse went in her room one morning and found the patient sitting in bed holding a mirror up to her face. She had put on her brightest lipstick, a deep red that was in shocking contrast to her pale skin. There she sat with her cheeks sucked in, making a fish pucker face,moving her lips up and down.  “Mrs.Rose, what are doing there making that face?” the nurse asked in bewilderment. “OH, I’m just practicing” she said matter-of-factly.  “Practicing what?” the nurse wondered.  “Well, this book here talked about guppy breathing as you die, so I thought I should practice it to see how it looked…I want to do it well.”  

The nurse could hardly contain her laughter at this misguided attempt.  If she only knew how different the fish pucker face was from actual agonal breathing…and how strange it would be if that’s the face we all made when we died!

Prisoner of the home

I've started home visits this month.  A little different pace than working in the hospital.  I like getting to come into people's space.  Their homes tell so much about them. A little glimpse that most doctors don't get into their patient's lives.

One of my encounters yesterday stands out, not because of the appearance of the patient's home, but the appearance of the patient himself.  He's had squamous cell carcinoma of his sinus for 2 years.  The cancer has literally eaten away his face. 

When you see him, he has something like a curtain hanging over his right cheek.  Some pads are taped up to his eye brow, and then hang down over the area of destruction so you can't see.  He's developed a nervous tick over these 2 years, his right hand taps the tape, while his hand conveniently covers the dressing.  I assume it started whenever the first lesion appeared, kind of hiding it from people without them noticing.  Now this habit is a full blown tick, he can't stop the motion. 

I was amazed when the dressing came off.  The perspective was something I've never seen.  From below his eyebrow down to his lower lip is a large cavern.  NO longer any eye, cheekbone, top lip. It's uneven and oozing, as if some creature just took a giant bite out of him. He wears dentures still to help him drink fluid (since his lip is gone).  Thus peering down at him, I could see the top of the upper dentures; as he moved his jaw, they moved. The hole is the size of a grape fruit- his nose only half there.  He can't take any solid food, and even fluid pours out of the right side, so that only a few ounces get in. 

It must be hard for him on many levels.  One, he's a prisoner of his house, to embarrassed to leave, even with the dressing, people would stare.  He hasn't been out in over a year. The other hard thing is the visibility of the cancer.  If there's a blessing in most cancers, it's that it's on the inside...so we don't see it's destruction. To have to feel, watch, and experience the eating away of your body must be torture.  

Saliva facts

I learned an interesting fact today - on average, adults produce 1.5 liters of saliva a day.  Picture it - that 2 liter of coke in the fridge, 3/4 full of spit....everyday we do this.

You may wonder why this is important.  It's really important to hospice docs and nurses, the people who take care of those in the process of dying.  Often terminal patients, when close to the end of life, don't do the simple things like swallowing anymore - we have reflexes that keep us breathing, and keep our hearts going when we're in those deep comas close to death - but the swallow mechanism is often absent.  There's that 1.5 liters that has no where to go.  We give special medicines to help stop the saliva production... thus the interesting fact of how much we make everyday!   Just to round off the saliva discussion - did you know that the tongue couldn't "taste" food without saliva...  a dry tongue will taste nothing.  

Fun facts to pass around and mull over during your next meal.