I have a letter to my family that I keep in a gray, fireproof box.
The state calls it an Advanced Directive. I call it a Love Letter.
I have watched enough dying to know how I want to live….and how I want to die.
I have known patients whose love was brave enough to face the hard questions so their family didn’t have to; and I have been with family members who agonized over whether they had made the right decision in those last, desperate moments of panic.
My grandmother didn’t need an Advanced Directive. She was 92 years old and living in a nursing home. She told my mom she was tired and wanted to take a nap. Thirty minutes later she passed peacefully in her sleep.
My mother was always healthy and always practical. She had filled out an Advanced Directive decades before she ever needed one. She wanted us to know her wishes so she told us where she kept the original and gave copies to her doctor and to each of her children. She was healthy until she was 82 years old and had her first stroke. When her second stroke came less than a year later, the neurologist told me she would not recover this time, that her brain would continue to bleed and her bodily functions shut down. He gave us the option of putting in a feeding tube to prolong her life.
My mother was awake and alert when I told her what the doctor had said. Unable to speak or move, she was still able to understand, and even though we had talked often about her wishes, now was when it really mattered. Even though I knew what her answer would be, I asked her if she wanted the doctor to put in a feeding tube. She mouthed the word “No” and shaking her head said, “Take me home.”
My mother fell into a deep sleep and peacefully died at home 4 days later, just as she had requested. She was surrounded by her family in a room filled with prayer, music and candlelight.
My sister died 2 years ago today, and she is the reason I am writing this.
How my sister died is the reason we all need to have an Advanced Directive.
You see, my sister had been on life support for two weeks before I even knew she was in the hospital. She did not have an Advanced Directive, even though she had been very, very ill for over 3 years, bedridden with chronic, degenerative disease from which she would not recover. She spent the last years of her life in and out of nursing homes, the last having a locked psychiatric unit – because that’s just how sick she was.
In previous years, I had brought up the subject of putting her last wishes in writing when she could still understand what an Advanced Directive meant. But she never wanted to talk about it.
A few weeks before she died, she came down with pneumonia and landed in a hospital emergency room.
Pneumonia has been described as one of the more peaceful and least painful ways for the body to die. Dr. Ira Byock, Director of Palliative Care at Dartmouth Hitchcock Medical Center says,
“The human body is hardwired with a variety of ways to shut itself down naturally, and pneumonia is one of its least painful exit strategies. It’s also one of the most treatable, so doctors rush in to intervene, and each regimen–antibiotics, ventilators, surgery – forces the body of a critically ill patient to find a more painful way to die.”
As is typical with pneumonia, my sister’s oxygen levels were dropping. She was having trouble breathing so the doctors cut a hole in her neck to insert a tube into her airway and hooked her up to a ventilator that would breathe for her. They did this (her nurse told me later) even as she screamed at them to stop. She was not out of her mind, she was just tired of fighting her illness and did not want any more medical intervention.
But there were no documents supporting her decision. And sadly, practicing medicine has become more about protecting ourselves from lawsuits than asking if we are doing what is ethically right for this patient at this point in her disease. So, numerous other lines and monitors and tubes followed, to breathe for her, feed her, keep her hydrated, give her medications, monitor her heart, and record her brain activity. She was technically alive, but only with the help of the machines she was attached to.
An Advanced Directive could have prevented this– not her death – but how she died.
She still would have died, just not the way she did.
The way she died wasn’t just awful for her, it was awful for me and it was horrific for her husband.
It was excruciatingly painful for those of us who had to make the decision to take her off life-support – to make decisions that could have and should have been discussed and decided before they were ever needed and even if they were never needed.
You may not know this, but it’s a lot easier to put someone on life support than to take them off. Not just emotionally or ethically – but legally.
People don’t like to think about it or talk about it, but the reality is, every one of us is dying. At some point we are called home. We may fall asleep peacefully, or we may have a chronic disease that gives us some time to plan, or much more likely, we won’t have any time to plan.
Either way, if there are people who love us and who would be shattered by having to make those hard choices for us, then the most loving thing is to decide for ourselves. Today. Ahead of time. In advance. Hoping that we never need to use it…
Because to put our love in writing is to save others from having to live with doubt or guilt that maybe, just maybe, it wasn’t the right choice. And it’s those unanswered questions that keep us awake at night.
You don’t need a lawyer or a notary to write an Advanced Directive.
It’s not hard to find and it’s not hard to fill out.
But it becomes very hard for the people you leave behind if you don’t fill one out.
So, if you can’t do this for yourself, do this for them.
They will want to know they honored your wishes.
They will want to know they made the right decision.
Don’t let them down.
Just Google “Advanced Directive” or “Living Will” or pick up a hard copy at your local hospital or doctor’s office.