The Anatomy Of A Home Death Without Hospice

Although his family was convinced that it was the metastatic prostate cancer that would eventually lead to his demise, I had my doubts.  His dementia had progressed to the point that he spent all his days in bed.  He could no longer navigate the most simple activities of daily living.   His caregiver fed him, dressed him, cleaned him up after he went to the bathroom.

I visited him in the home.  

We met eight months before his death.  His wife, two daughters, and I.  We discussed what dying looked like.  We talked of dignity, and what decisions he would make if he had the ability to rationalize his current situation.   We talked of dementia and how it eventually robbed it's victims of the ability to protect themselves from infection, aspiration, and bed soars.

They wanted him to continue seeing the oncologist and take the monthly shots that were possibly keeping the cancer at bay.  They wanted antibiotics and blood tests, but agreed to look over the POLSTt form that I brought them.  We discussed what would happened if his heart stopped, or he stopped breathing.

A few weeks later, I came back to look in on him.  The daughters were not present but his wife handed me the completed POLST form.  Heroic measures would not be necessary but antibiotics and lab tests were ok.

I examined my patient.  He no longer recognized me, but answered my questions as he was able.  His fingers had begun to contract, and there was the hint of a pressure sore on his back side.  I educated his caregiver on positioning techniques and placed the POLST form on the refrigerator where all could see.

Five months before his death, he became more confused and his urine developed a foul smell.  I came to his bedside and obtained his vitals.  The blood pressure was strong but the heart rate had risen.  We sat again, his family and I, in the living room and hashed out the details.

He had a urinary tract infection and was becoming septic.  We reviewed the options and eventually it was decided to try oral antibiotics at home.  Unlike his previous episodes, there would be no hospitalization this time.

Three months before his death his mental status became progressively worse.  He refused to take his medications and would often pass on meals.  He occasionally spit his food back at the caregiver.

Again we huddled in the living room.  They were not emotionally ready for hospice but yet were reticent to send him back to the hospital or check more tests.

He somehow made it to one more oncology visit.  His labs were strikingly normal.  He even woke up for the trip and put on a good show for his doctor.  But by this time he needed such extensive assistance to get out of bed and into the car, that even his daughter who was in quite a bit of denial about the current situation couldn't fail to see how far his state had progressed.

A few hours before his death his wife called to tell me he was having difficulty.  She held the phone up so I could hear the undeniable rattle of Cheyne-Stokes breathing.  I told her that he was dying.  That she had to make a decision to call an ambulance or to let him go peacefully at home.  I told her that this was what all our conversations had been building up to.

She hung up the phone and called her daughters.  A few minutes later, they were all by his side.  His daughters arrived in time to be present for his last breath.  Calm, quiet, uneventful.

I certainly wish they had allowed me to get hospice involved early, to make sure that appropriate meds and training had taken place.

But that was not their wish.

And it all turned out okay in the end.    

Be The Protagonist

I have said many times that we tell the stories about our own lives that make it bearable, or better yet magical, mystical.  I often use the death of my father as an example.  I was eight years old when he passed away.  Instead of embracing his premature demise as the greatest tragedy of my life, I credit this misfortune with my decision to pursue a career in medicine, and hopefully touch countless lives.  Reframing of my childhood has allowed me to feel like I grew up privileged.  Even lucky.

It has occurred to me recently that such story telling does not only have to be reserved for interpreting the past.  In fact, it is the present, and even the future that could also use a certain recalibration of lens.

I think that we, as human beings, struggle with happiness from day to day.  We bounce from stress to joy to tragedy.  We slog through our jobs, relationships, and financial issues and think little about how  our own thoughts lead to even greater distress.

I have decided to try to take a different path, and become the protagonist.

When facing the hardships of life, I am going to reframe my vantage point.  Like any good book or movie, most conflict can be distilled down (or blown up) into a battle between good and evil, right and wrong.

When you envision yourself the protagonist of this epic battle, you automatically view yourself in a different light.  For instance, the protagonist, from the outset, is innately good and virtuous.  It is the nature of the role even before any action takes place.

Furthermore, when you take on this persona, you hold yourself and your actions to a higher ethical standard.

No matter the outcome, win or lose, there is a certain glory in being the protagonist.  Success, against the odds, is expected.  And failure, even at it's worst, is filled with honor and humility.    

The role of protagonist could embody our best and most virtuous intentions.

 

Building

I have been thinking a lot lately about a dream I had as a first year medical student.

My father is standing besides my brothers.  We’re all building.  Putting the pieces together.  But I’m stuck and no longer making progress.  My mom stands besides me oblivious to my turmoil.


Does she know what I’m thinking?  This must be a dream because we are grown up now, and dad died when I was eight years old.


Although everyone’s building, I can’t.  I watch the way my father moves.  Somehow, I know this will be my last chance to see him again.  I’m afraid because over the decades his memory has faded so much.


But here he is in front of me.  I try to distill his essence, but it hurts.  I start to shake and bend over in pain.  I weep.


Mom turns to me and glares.  She’s the only one that notices.

”Tell him, tell him!” she urges and then turns away.

I crouch besides my dad while he continues to build.  I whisper softly in his ear.


”I will miss you dearly when you are gone”

These are words an eight year old never knew how to say.  But now, now I know


He turns around and smiles  He then holds me.


”I love you” he says

But I am too overwhelmed to speak.  Which really doesn’t matter.  He understands.


I hear voices, spirits, coming to take him away.  He holds my mom’s hand and she walks him to the door.  My brothers and I continue building.  But now we are joined by my wife and kids.

We continue building our lives.

As we work, I tell them we have to stick together .  We have to talk to each other.  My son and daughter look up inquisitively and ask me if I am okay.  I'm not a twenty two year old medical student anymore more but a forty two year old husband and father.  Yet with complete certainty, I answer the same way.

No.  No.  I am not okay.

I take a deep breath.  Put my head down.  Start all over.

And begin to build again.

For The Most Part, We Get It Right.

I have two refrigerators.

The full size, expensive version, sits in the usual location in the kitchen.  The small black one rests idly in the basement.  Excluding this morning, of course, when I dragged it up the steps and begrudgingly coaxed it back into action.  Let me explain.

Six months ago my old refrigerator started acting up.  Somewhere around year five, it’s motors groaned, its coolers moaned, and all the sudden the food started to smell.  So I called the repairman and hundreds of dollars later, it worked like a dream.

Until it didn’t.

The repairs held for all of a week.  I called the repairman back.  And we danced this dance a few more times.  In the meantime, I ran out to the local appliance store and bought a mini fridge to store my food.

I lived out of that little black fridge for weeks while workmen came and went.  Every time one problem was fixed, another popped up.  Eventually I bit the bullet, returned to the appliance store and brought a brand new, state of the art, full sized refrigerator to replace the old.

I happily returned the black fridge to the basement and thought little about it again.  For six months my new appliance worked exactly the way it should.  The ice bucket was always full.  Each zone maintained the correct temperature.  I had separate drawers for the fruits, vegetables, and dairy.

I thought I was truly on the pathway to appliance nirvana when the unexpected happened.  I awoke one morning to fine a horrible sound coming from my brand new refrigerator.  Hours later it was dead.  My ice cream melted and my vegetables wilted.

I called a different repairmen who showed up promptly, and fixed the problem in short order.  Money well spent, or so I thought, until the same exact scenario played itself out forty-eight hours later.  

Another trip to the basement, and the little black refrigerator has once again taken up residence in my kitchen.

This experience is nothing new.  I can’t count how many times a television has broken, an Ipad has malfunctioned, or a dishwasher latch has busted.  Each time I dutifully call an expert who sometimes gets the job done.  But often the repair  unravels or the machine is deemed DOA and unable to be fixed. 

This often makes me wonder why we expect so much out of our doctors.  The human body is far more complex than any electronic.  The number of moving parts measures in the millions.  And god knows how personal psychology plays into the range of pathology.

And for the most part, us doctors, get it right.  Eighty to ninety percent of the time.  Day after day, year after year.

I wish I could get this kind of service with my appliances.