“I want to be kept alive on machines and undergo as much invasive treatment as possible, regardless of how little time or quality it will add to my life. My community can pay tens of thousands of dollars, while watching me suffer the indignities of such treatment!” said…Who?
No one, EVER as far as I know, has made this request!
But because our culture has such an aversion to discussing death, this is often exactly what happens. There are countless studies that point to the huge share of our health care dollar that is spent in the last 6 months of life.
Sadly, so little real planning and conversations take place until it is simply too late. Starting in January of this year, Medicare will reimburse physicians $86 for a 30 minute consultation on end of life issues. It is recommended that insurance plans do the same.
Unfortunately, many physicians are neither trained nor comfortable having this discussion. Add the fact that most Americans have not discussed with their wishes with their own families and the problem is exacerbated.
Several years ago we brought my mother to Redding from Florida via air ambulance. She had been on a downward health spiral for some time. Her long term care plan had always been to live 6 months with each of her 7 children on a rotating basis. I got the first shift.
I tried to discuss Hospice with her and had no luck. So I became her personal Hospice caretaker.
I was most grateful for the help of my dear friend and family physician, Jack Kimple who took her on as his patient. He reviewed the ridiculous excel spreadsheet I was using to manage her Rx and reduced them to just a few. I prepared a high protein diet, got her out in the sun and within a few weeks she had gained 10 lbs., her wounds were healing and she was enjoying a lovely quality of life.
Nonetheless, I was well aware that it was unlikely any of my siblings would see the next shift. Her lungs were shot from COPD (Chronic Obstructive Pulmonary Disease).
A few months later we were late for Sunday Mass, so she decided we should “skip it and go shopping”. I pushed her around in her wheelchair for the better part of the day, until I was worn out and begged her to let us go home.
As we were getting her into the car, she had a sharp pain in her chest and struggled to breath. I helped her increase her oxygen and we headed home for more breathing treatments. She was still struggling on Monday, so we went to see the doctor. He thought she had a pneumothorax, (collapsed lung). The on-call doctor was very kind and explained to her that he could hospitalize her and insert a chest tube, but in reality, she just wasn’t going to get better. The air hunger was just going to get worse. He used the standard “get your affairs in order” phrase, then wrote an Rx for liquid morphine explaining how it was to be used to ease her air hunger and her transition.
Sitting in the drive through at Walgreens, Mom asked quietly, “Is it going to hurt?” “I promise you Mom, I will do everything I can to make sure it doesn’t,” I replied.
Later that day, she called her sister to ask if what she was doing was ok. Mom was a devout Catholic. Her sister assured her that she was not taking her own life and reminded her that their own mother had died at home.
For 3 days I gave her tiny doses of morphine, just to protect her from the air hunger, but not enough to put her into a coma. We talked, laughed and watched TV together. Sometimes we were simply quiet; content in our mutual presence.
My brother came up to visit for a few hours and insisted that she go to the hospital. She told her son “no”. “You don’t want her to die in your home, do you?” he asked, incredulous. I told him there was no other place on earth I would want her to be. I slept on the floor next to her bed so she would not be alone. She slipped into a coma about 12 hours before her breathing changed to where I knew it was close. It was a beautiful and peaceful passing. It was 13 years ago, today.
I have had the privilege of being in attendance at several deaths; in home and hospital. My personal preference is home in a warm and cozy bed. No sterile hospital lights or noises. As Jack said, “The greatest gift you can give someone is a graceful and dignified exit.”
Shouldn’t we all have the opportunity to understand and communicate our choices before it’s too late?
