End of Life

I can remember my first experience with death.  I was 19, totally self absorbed and spent way too much time partying. My mom called me in tears to tell my grandfather had died. I wasn’t close with him, and as I told my roomates, they reacted with utter indifference. I was hurt and it was the first time I knew all the way deep down that nobody was invincible. People die. In my 20’s, my uncle committed suicide.  He was the most spectacularly kind man and had had a hard life. It took me years to let go of my anger toward the failure of the psychiatric care he’d been under for so long.  I will forever treasure the time I got to spend with him in the months prior to his passing. My first family dog died at 15 years old and that was a blow. Then my mother became ill. She was sick as a dog for almost 2 years, and was blown off by some doctors, and refused care from some others. It wasn’t until she was cripplingly sick, with a fever that wouldn't break and I literally begged her to go to the hospital where she was ultimately diagnosed. She had stage 4, inoperable lung cancer. I can remember people asking me more frequently than not, “did she smoke?” I tried to be polite and accepting of the sympathy they were providing, but all I could think was “does it matter if she smoked?  She’s dead”. I never really felt right after her passing. I had insomnia for close to a year and found comfort in alcohol. 3 years later I had a baby and my grandmother passed after 20 years of battling heart failure. I had almost nobody left in my corner. I was a mess.  I did what I needed to do, and I dove into my new role as mom, while navigating a relationship with a difficult to love, but most amazing man that was everything a father should be. My relationship with him was not always the best and it took us a good 8 years to finally truly learn how to love one another unconditionally. About 2 years after we’d finally found our happily ever after, he got indigestion. By that time I was a nurse and working in an ICU with big plans to go to nurse anesthesia school so that I could eventually contribute enough to get us financially secure.  We talked about moving to a local suburb that had schools as good as where we were, nice homes with awesome yards, better taxes…he had indigestion for about 2 months, then he got itchy. Then I noticed he was mildly jaundiced. I took him to the closest ER after night shift. He had stage 4 bile duct cancer. It was the first time he’d ever been sick, had never been hospitalized before, never even a broken bone. We had about 16 months of lows with a few good months mixed in and then he passed away at home. I was in crisis mode for 6 months. It took me a very long time to process his death.  I never felt supported by my knowledge or by any of his care team. We had bad experience after bad experience after bad experience in our local hospital system, with a few good ones. It was clear to me that the system was broken. His oncologist would not look us in the eye to tell us that he was stage 4. He couldn’t. He was still offering chemo when my husband was so confused he didn’t know what day of the week was. He had swelling so bad in his lower legs and feet that they were purple. He could barely take the three steps he took into the hospital bed where he passed 3 days after we "trialed" hospice care.

There is no doubt in my mind that we have the best medical care there is to offer when it comes to trauma, and that we “have” the best, most up to date treatments available for our sick.  But it took us months from initial ER visit to start chemo, and then more months before I was able to elicit a stage from his oncologist.

I can remember having goals of care conversations when I was still working in the ICU with doctors. They aren’t prepared. They aren’t trained. They can’t look a person in the eye and say that further treatment is futile. They continue to provide barbaric treatments while family members stand by watching with hope. We give CPR to the elderly frail because their family demands it. We torture people in the name of hope. There is rarely a goals of care conversation where there is real honesty. Everyone dies. How they die does not need to be so terribly full of suffering. People can and should be able to live their final hours, days, weeks and months with dignity and comfort. We have the knowledge and we have the ability. There needs to be a shift in how we as a culture view death.  It is (unfortunately) a fact for every single living being. It is time that we shift our perspective and learn how to give people the kindness of a peaceful final phase of life and transition out.