April Fool's Day...

A phone rings at five am, "Doctor, your patient just died... just wanted to let you know." After 25 years of dealing with phone calls like this, you roll over process the name and get back to sleep. There is a distance that doctors are trained to keep... a distance that protects them yet isolates them. Part of my journey has been the destruction of that wall, that distance that numbed me from death and thus from life itself.

This year, April Fool's day was meant to finish the breakdown of that distance.

My father was in the hospital in critical condition, my mother had eye surgery and was having difficulty getting clearance due to her end stage Sarcoidosis.

It isn't until I walk onto the Palliative unit and enter the room that I realize the enormity of that simple early morning conversation.

My patient... a woman I have helped fight back pain for 4 years, who has survived 10 years after a diagnosis of end stage colon cancer has died. I sat with the brother and my nurse (who btw I noticed was treating me as family not doc) and we talked about what a great woman she was and how just plain cool she was.

I missed her and I cried.

Several hours later I received a phone call from the ER about a woman who was one of my private patients... a 53 year old woman had just had massive cardiac arrest and died. I barely considered her a patient. She was that healthy... and now she was dead, oh, and could I please come and sign the death certificate.

After several minutes of stunned silence I put down the phone... and I cried.

“Death, the one appointment we all must keep, and for which no time is set”

Charlie Chan

Long Drives...

There is a young man whom I have cared for who has ALS (Lou Gehrig's disease). It has come about that he has been living with this horrible illness for the last two years. Since that time he has continued to work until five months ago when his weakness confined him to home.

He worked as a maintenance man at the hospital, and he is a very popular and loved man, always laughing and making light of his illness.

As a result of this, his friends gather around him both at home and wherever he goes.

He is never alone.

His wife is a loving and strong woman who has faced the rapid decline in this young strong man whom she loves with grace and dignity, and I wish I could have met her before I did to see a smile on her face. As it is I met her when we consulted on him at this last admission... when the work of breathing became almost too much and he required a BiPaP machine and a PEG to maintain.

He is a proud man and is refusing intubation and the like, yet his demands to pull the last drop out of life are exhausting, to himself and his wife.

As I said, he is never alone, which means she is never alone either.

On consult we discussed hospice and how appropriate it would be for them to go home on hospice and he can be comfortable at home. They agreed and he was sent home for what we thought would be the last time.

The crowd of friends and family were there until the man and his wife were alone at home... when the lack of air (both literally and figuratively) that they felt drove them both to panic and call 911 for the return trip from home to the hospital.

She aged 10 years in that one night. The brave facade of the strong enduring wife replaced by the exhausted expression of a woman whose world has collapsed and she knows now... really, that she faces the end.

Upon our visit today, amidst the crowds of friends and family, she came to us from in back of the room and we discussed going to the in-patient hospice facility nearby.

She was tense as she thought things through until I looked out the window then at here and said... "It's a beautiful sunny day, why don't you take a ride out there to check it out... just you?"

At that she smiled and took the brochure and left the room, permitted to just be her, not "the wife", but just her.

At least for a little while.

A Cup of Comfort...

No new revelations on this post.

I do want to announce that I am featured as the lead story in the anthology "A Cup of Comfort for Fathers", a book that has collected many stories (both poignant and funny) about fathers and their effect on the lives of their families. My Story "A few Minutes in the Shade" was written 10 years ago and details an encounter with my then 5 year old son and how wisdom does not always come from age or experience... but rather in the simple observations of a child.

This book is available on Barnes and Noble.com is edited by Colleen Sell ( a wonderful and gentle soul) and is published by Adams Media.

A Phase in the Life: Changes... Fugues... Obsessions... Awareness... and Re-Integration

I've been away for a while.

Well, not really away like on a trip to the amazon or a stay at a monastery or something like that, but rather away from this blog and in essence away from introspection and observation of what is happening around me.

I think this happened for a few reasons that I outlined in the title.

Firstly, there have been some significant changes in my professional life (some that are ongoing as you'll see in the next few months) that go to the core of my professional identity. I work now for the most part for Catholic Health System of Long Island as Regional Director of Palliative Care.

This is a good thing.

However, it shakes my perception of myself as the rugged individualist who has a big practice on his own... an island unto himself so to speak.

This "sea change" in my professional career caused what I call a professional "Fugue State" in which for the last six to seven months I have gone about my day seeing patients and functioning, but feeling like a hamster in a wheel... running running and running and going nowhere. Granted I have been helping people all along and making those observations, but not truly thinking about anything other than keeping my nose to the grindstone and staying ahead of "the List".

Which brings me to obsessions... don't snicker, it isn't deep and dark (and by the way don't act like you all don't get them on occasion), yet I became in a minor way obsessed with a video game. An online diversion that took me, for the time I played it, away from feeling a part of the corporate machine and once again in control of myself in the form of my pixel self.

Where does awareness come from?

If I knew that I would set up a series of lectures and sell books on it... but I don't, I just know that to me awareness came as a thought in the night. I was awakened by the nurses on the Palliative unit and told that one of my long time Palliative outpatients was transitioning to the actively dying state. I handled it as he and I had agreed on and lay back to try and get to sleep. I then became aware of what I was doing... and why I was doing it. I became aware of all the patients who have trusted me to make their lives safer and more comfortable over the years... and of my own parents heading in that direction.

Suffice it to say, awareness has returned and now begins the process of re-integration... restoring "Me" to where I am... and how I care for my patients. Integrating my little obsessions into a healthy life, and most of all remembering to stop... look around... actually see what is in front of me... and enjoy the journey that I have the privilege of sharing with everyone in my life and with all of you.

Magical Thinking

Zusne and Jones (1989: 13) define magical thinking as the belief that that one's thought, words, or actions can achieve specific physical effects in a manner not governed by the principles of ordinary transmission of energy or information.

When I went to medical school, we were taught that magical thinking was either a harmless superstition like crossing one's fingers to bring them luck, or a dangerous psychotic delusion, like stepping off a ledge and expecting that you are going to fly.

Since school, I have observed (and frankly participated in) varying degrees of magical thinking. Some lines of thought are fun and some are scary but all have at their core the fervent hope that things will be different than what they are for real.

Since my "evolution" as a physician I have been able to observe that the most ardent practitioners of magical thinking are those of us in the medical profession. It is common practice, for instance, when performing minor procedures at the bedside to disinfect an area of the skin three times prior to performing the procedure. There is no evidence to prove this, but it is commonly done... so much so that the little packets of iodine swabs used for skin disinfection have three little pre-saturated swabs.

Much of this has come down to us from the middle ages mixed with the very real concerns for public health and the provable infection control practices of modern medicine... but still curious.

Unfortunately there are two common threads of magical thinking out there that are perpetuated by the health care community.

The first one is that medicine and medicines can cure anything from cuts and bruises to severe depression. Like any good magical thought, it has it's basis the provable facts of cure from many diseases, however medicine cannot cure many of the ills associated with life itself, such as aging, self abuse such as smoking and obesity. These require the more tedious and "obnoxious" change in lifestyle.

The second (and infinitely more cruel) form of magical thinking is perpetuated by the fears and hopes of medical practitioners themselves. When a person is found to have a terminal illness of any kind (cancer, heart disease, lung disease, etc...) rarely is this information related to the patient. The severity and need for frank and honest discussion of the very real prognosis is held back in the "magical thought" of not wanting to take away hope. Often the thoughts of the practitioner and the thoughts of the family and patient become so intertwined that they begin to exist in each other's fantasy of cure, instead of the reality of treatment and hope for a good life for as long as it lasts.

I am a deeply religious man and I believe strongly in prayer and the power of hope. I have seen in my life what I perceive as being true miracles. However I have seen these miracles happen in the face of a patient that realizes that these are indeed miracles, that these cures and recoveries are the products of a higher power and not the result of crossing our fingers and rubbing our rabbit's foot for luck.

"Pal Care" and Shoeboxes

Recently, my team and I were sitting and talking with a patient who was hospitalized due to severe pain from multiple myeloma. On her admission, this lovely vivacious woman was reduced to a cringing shell, praying for death.

Fortunately, we were able to positively affect her symptoms and she became much more talkative and showed us a spunky, flirtacious woman who has more life than three normal people combined.

She has labelled our team "Pal care" and I asked her if it was really that hard to say the word palliative? She laughed and said... "No silly, you guys are my pals, so you guys are Pal care".

What a great idea and one which caught us all aback, yes indeed we try to be the patient's Pal.

This lovely woman also explained to us that we now have a Pal Care shoebox.

When asked to explain, she said that everyone has a shoebox, the oncologists live in the cancer shoebox, her fears live in the stinky thoughts shoebox, and now we are in the Pal care shoebox. I cannot think of a better description of "compartmentalization".

Today, as she was preparing to leave tomorrow morning, she asked me to stay behind and speak privately to her after the team left the room.

She spoke to me of her fears... fears of death... fears of a life of pain... and fears of saying goodbye to the hospital family she has grown to love, even without knowing their names.

As I left, she touched my hand and said, "thank you for helping me deal with the stinky thoughts shoebox".

Absurdities

As of this writing, I am on the eve of removing the ventilator support for one of my favorite patients in the world. I have known her for over 15 years and she is one of the few remaining patients that I continue to see from my pre-palliative care internal medicine practice. She has severe Adult Respiratory Distress Syndrome due to sepsis and pneumonia and she is near death already on multiple pressors and full support.

In her terminal episode, she has taught me many things.

Once again I was reminded that I cannot fix everything, no matter how hard I tried.

I found myself tearful as I ordered her intubated... a chill running through me and an unspoken cry of "Oh my God this can't be happening" in my gut.

I found that I had to let go... I had to let another physician - an intensivist - take over her primary care (difficult because I am a trained intensivist), because I am definitely "too close".

And I found myself today sitting with her son in her isolation room in the ICU... two grown men talking about the end of a lovely woman's life, while we were wearing green isolation gowns, yellow masks, latex free gloves, and "poofy" blue bonnets.

In one instant tears became laughter as I visualized us both in those ridiculous outfits and I shared it with her son.

He laughed... and said that in the end... his Mom would have been hysterical laughing at us both.