Monday, December 26, 2016

First, Dispense of False Uncertainty

First, dispense of false uncertainty.

Your father is dying.  I'm sorry.  I know this sucks.  It is horrible, and unfair, and heartbreaking.  I have been there with my own loved ones and counseled many patients through similar situations.  Your brain will try to convince you that it isn't so.  That cure is around the corner, or that if you just make the right decision everything will be OK.

Everything will not be OK.  Your father has cancer laced through his bones and inner organs.  He is bound to his bed and can no longer feed or bath himself.  He has lost interest in eating.  Although I wholeheartedly regret this,  I must not mince my words here.  My bluntness is not meant to be unkind or crude.  It is crucial that you understand where we are in order to move forward.

Death is coming no matter how much you or I wish to deny.

So let's not.

Indecision is decisive.

There will be a strong inclination to pause.  These are horrid decisions that no family member should have to make.  Yet doing nothing creates its own set of consequences.  Without actionable breakers, our medical systems can become a runaway train of horrors.  CPR will break your fathers ribs but will not remove the invaders overtaking his internal organs.  Feeding tubes and IVs will deliver nutrients, but those nutrients will more likely feed the raving beast, and less likely provide meaningful benefit to his ailing body.

Ventilators are magical and awe inspiring when they support the respiratory system of someone who will eventually recover, and conversely barbaric when they provide buoyancy to an otherwise porous ship.

You should sign your father's DNR form.  Life support will not save him, it will prolong his death.

Dignity turns process into an event.

In my interactions with your father, he has seemed a dignified and kind man.   My wish is to provide as much dignity in death as he has enjoyed in life.   To do this, we must move away from futility.  Futile medical treatment brings pain and discomfort.  Pain and discomfort turn death into a process.  A prolonged, agonizing, distressing process.

I would like, instead, to think of his life as the process and death as an event.  By treating him with dignity, managing his symptoms, avoiding unnecessary medical treatments, and providing joy in whatever ever mode possible-we can truly help him feel like he is living until the unfortunate moment he dies.

Bring it home.

I want you to know that I not only worry about your father's wellbeing, but also your own.  After his death, despite your best intentions, you will spend much time thinking about his last days.  Let's create a safe and peaceful landing place for him.

I hope to leave you with the memory that at this most difficult and important time of your father's life, you provided him selfless dignity and comfort.

You gave him one last gift.

You will sleep better during those future restless nights knowing this.


Maggie said...

Beautiful Doctor,

You have me in tears. This is so much what our children need to hear as we reach the end of our long and wonderful lives. This is so much what our spouses need to hear as we reach the end of the long decline of terminal illness.

I so appreciate the directness, and the bluntness of your language. As a hospital chaplain I see so many families who imagine that, after grandpa's heart has stopped because of the lung cancer crowding out his ability to breathe, CPR will somehow allow him to keep living.

I hope when it is my turn, that the doctors will read my advance directive. And I hope they will be every bit as blunt as this.

Thank you, so very much.

Nancy Hitzeman said...

Yes, and thank you. My Mom was in the final stages of Parkinson's disease. She weighed 80 pounds, was blind, could not speak, could not move, could not swallow or eat, was unaware of who, or what, was around her, was completely unable to function in any way.

Per her advanced directive, I was able to allow my Mom to die with peace and dignity, at home, by saying a resounding "no" to the internist who suggested a feeding tube, and an equally resounding "no" the surgeon who wanted to amputate her great toe due to a wound that wouldn't heal.

When it is my turn, I hope that my daughter or husband will have the courage to allow me to die in peace.

Anonymous said...

Thank you for this. I've known of horrible stories because of futile 'do this at all cost' and then the family members leave without seeing the consequence of their actions.

I think they should be forced to stay and see what happens.

Marcella said...

Well said. Doctors who avoid this conversation make my job much more difficult! I cannot tell you how many people come in to do estate planning and go on to say "If I die...". As an attorney, I wish doctors would allow us to do the estate planning but tell their patients the medical facts so we can tell them the legal facts in a factual context! Many doctors refuse to diagnose Demetria also. Same problem. Thanks for your blog. Marcella Downing, Esq.

Anonymous said...

But why is giving up the only dignified option? My father had stage iv lung cancer. Chemotherapy and steroids improved his quality of life, until the doctors convinced my mother to "temporarily" abandon chemo and steroids, for a surgery meant to be exploratory. He died because the doctors saw him as weak, and had no way to strengthen him (and didnt care to - all doctors want for stage four patients is a convenient death of choking pneumonia.) I will never be happy again. I can't love my newborn baby because her grandfather never met her. All to preserve some doctors idea of death with dignity. How about Life? How about trying harder to give a good man more good Days? I want to die.