On death and dying

Uncle Jim, Aunt Rita and me

On death and dying and the five stages of grief

As a medical professional, I face life and death as part of my daily routine. When I was an internal medicine resident, I always had a "black cloud." A black cloud meant that whenever I was on call, I always got the most admits and the sickest patients compared to any other resident. I figured I got lots of learning by being busy but it also meant I had lots of practice at having end of life conversations. After a while, talking about death is something that you don't even think about. It is like getting dressed in the morning or brushing your teeth, it become a part of every day routine. Unfortunately, we don't often have time to sit down and reflect on death when it does happen because we are rushed off to see the next patient or do the next procedure. Just last week, I was involved in the care of a critically ill patient in the intensive care unit and the patient was talking to me one day and then I came in the next day and found out from the nurse that the patient passed away overnight. The family was gone, the body had been moved down to the morgue. There was nothing else to do and no one around to debrief with. I crossed the name off my list and moved on to the next patient's room. 

Death and dying are so routine that sometimes we almost become numb to it, a self defense mechanism developed over time to avoid having to really feel. Feel the sense of sadness, loss, and grief. The hospital staff, while exceptionally caring and empathetic, become used to dealing with death on a daily basis yet we don't really talk about it. However, when it happens to a loved one, it is no longer part of the routine and you start to feel again. 

At first, when my Uncle Jim went in to have a mass on his neck biopsied around Christmas, I was in denial that he could have a diagnosis of cancer. "Probably just a lipoma, a benign mass," I thought. Then it did come back as poorly differentiated adenocarcinoma. Cancer. 

There are five stages of grief and chronologically they are denial, anger, bargaining, depression and acceptance. After denial, I experienced anger. How could this be? Had someone had missed something? When was his last colonoscopy? What did his labs show? Then his PET scan showed widely metastatic disease. His cancer was not only in the neck but in his spine, esophagus, lymph nodes, abdomen and liver. How could it be so widespread, and so quickly? 

I talked to him about his cancer diagnosis. The source was still not known and he had many more doctors appointments and tests to go through before his oncologist would talk about chemotherapy and radiation treatment. However, he knew one thing, "I've got two months." He said. He planned his funeral - the venue, the music, the speakers. He found someone to take his dog. He started donating his things.

Seth and I quickly planned a weekend to the Twin Cities to see him. We helped organize a small party, a celebration of life, at his apartment. He strongly encouraged me to take some of his things, likely his keyboard and an afghan quilt my mom had made and given him 30 years ago. He also gave me a picture of two of his horses that he loved. I bargained with him that doctors cannot predict these things and that sometimes we say you have "weeks to months" or "months to years" and he can't just give away all of his things. He told me it's his decision and that his doctor said two months and that I better take his things. I was in the bargaining stage. 

I have known Jim my entire life and I was the closest thing he had to a daughter. His primary love was his horses. He was single and lived alone and never had children of his own. I grew up riding horses at various barns where he trained Saddlebreds from the time I could walk. My mom sent me out to Shakopee and Hudson and Forrest Lake to ride horses with Jim. We were in horse shows all over the Twin Cities - always winning blue ribbons.  I still have the first horse trophy I ever won. He always made me work at the barn - cleaning manure from the stalls, brushing the dust off the horses and scraping out their hooves. He told me the only thing he really wanted to do before he died was to brush a horse again, just once. He never had the chance.

Jim and I when I was about 5 years old

It is so easy in medicine to keep offering treatments and prolonging life. As I said before, death and dying become part of our routine yet our primary job in medicine is to offer treatment and continue to do all that we can to keep people alive. We have a hard time not being aggressive since it is what we are expected to do every day. It is hard to not offer treatment or stopping treatments once they are started. Often we forget to stop talking and ask the patient what he or she would want. Studies have shown that doctors as a group have very different preferences about end of life care than their patients.  Most of them would elect less invasive therapies and less toxic chemotherapy than what we routinely offer patients. Doctors would rather die in the comfort of their own home than be hooked up to machines and feeding tubes in a hospital, even if it meant less days of life.

Jim did what the doctors told him and he went to appointments and more appointments and more appointments to get more tests and procedures to prepare for chemotherapy. Then he was admitted to the hospital for intravenous fluids because he was too dehydrated. The cause of his cancer was determined to be from his esophagus and there was a large mass obstructing food and liquid from getting to his stomach and he kept vomiting. His doctor recommended a feeding tube. I had officially moved into the stage of depression. I knew this was going to be the beginning of the end. I was sad but I was angry, too. Jim was very clear that he did not want to prolong his life. He did not want to suffer. He had a end of life form that clearly stated he was a DNR/DNI and wanted no artificial feeding. Pain control was his #1 priority and he was still in a lot of pain from multiple tumors in his thoracic spine that were compressing his nerves to his arm. Why were his doctors recommending a feeding tube to someone with metastatic cancer?! I called my wonderful general internist friends to make sure I wasn't crazy and demanded a palliative care consult.

Palliative care saw him and he was very clear about his goals and the procedure was promptly canceled. Jim would be going home with hospice care. The next day he felt great. He packed up his bags and got dressed and was ready to walk out of the hospital. Typical Jim, a bit manic at times, he wanted to go home for a few days to see his dog one last time. My mom and dad took him on a pass from the hospital for a few hours to go to his apartment and get his things ready so he could move out and into a nursing home where he could have 24/7 hospice care. He found someone to take his adorable dog, Romeo, and he cried as he said goodbye to him and returned to the hospital.

Over the next few days, Jim and I chatted on Facebook messenger almost daily. He told me about how he rode his bike from South Minneapolis to Shakopee and Hidden Valley ranch when he was 14. He bought his first horse for $200-Ben, an Arabian. Dixie was his first Saddlebred. Then he had another Saddlebred, the Grand Charger. "Charger almost couldn't lose an English class" Jim said. Charger won Jim lots of blue ribbons, "unless he screwed up royally."

Me on Spanky, the pony Jim bought for Christmas

One year, Jim came to Christmas at our house in Mounds View with a big red horse trailer. He backed up into our driveway and in the trailer was a pony, Spanky. He called the city to get permission and my cousins Tommy, Molly and I were ecstatic! He stayed in our back yard with some hay for a few days and then my mom made him take it back. Besides Spanky, I rode many of Jim's Saddlebreds including Rebel, Firefly, Duke, Skipper and Angler.  Some were well-mannered and others were not. I was bucked off once or twice and refused to wear spurs ever again. Between that and hayfever allergies, my days in the barns started to dwindle.

My first horse trophy!

By the time I turned 12, I didn't have much time for horses. Soccer, swimming, basketball and other things were taking up more of my time. Jim and I drifted apart as his mental health suffered too. He sold all his horses and quit doing the work he loved. He worked downtown for a while and moved out of his lovely Loring Park apartment, whose walls were covered in photos of horses. I went off to college and would come home for Christmas. Jim was usually there but wouldn't say much but he always give me a big hug and a small gift. It was only in the past couple years that he really started to open up again. He told me that he really liked that tall guy I married, if only he'd shave his beard (and I agree). I really wanted Jim to come to our wedding in Costa Rica but it was very expensive and stressful for him to come and about a month before he decided it was too much for him and he didn't come. While Uncle Jim struggled at time with mental health issues, deep down he had a big heart. He was very caring, loyal, dependable, strong, organized, funny, loving and gave great hugs. 

Jim spent the last few years helping dozens of people through both Alcoholic Anonymous and Narcotics Anonymous as a coach and sponsor. The thing he was most proud of was being sober for over 30 years. By the time I was born he had cleaned up and horses became him obsession. I feel so fortunate to have spent so many years at the barn with Jim and am proud of him for staying sober.

Today, two weeks after entering hospice, two days after his 68th birthday, and less than two months after his diagnosis, Jim joined my Grandma Jane and Grandpa Jim in heaven on Valentine's Day. Acceptance, the last stage of grief. I am so glad he is no longer suffering. I am thankful that I was able to spend some time with him at his party last month. I knew leaving they party that it would most likely be the last time I saw him and I was ok with that. I knew that his days were limited and I selfishly wanted to remember him before he was too sick to know who I was. Jim passed away peacefully with the wonderful support of hospice at Redeemer Residence in Uptown. There will be a memorial service and funeral at the end of the month. 

Uncle Jim one month ago

Jim's family - sister JoAnn, niece Anne, great nephew Theo, Jim, sister Rita, niece Katie, great niece Marit, sister Michele, and niece Molly (and 3 babies in the front)

Jim and Rita

Jim, Rita, Michele and JoAnn

Jim and his horses