Death Can Be Beautiful
We always joked that my dad would be early to his own funeral. If he wasn't 10 minutes early, he was late.
Let's back up. My dad, an 87-year-old retired minister, still drove his car up until a week before he passed. His wife (my mom) and he have been married 60 years. Mom has had Alzheimer's for ten years -- five of which she's been living in a memory care center. He has been faithfully visiting her, even though she can no longer communicate. She has a smile that brightens the day like a 3-month-old baby. They sit together and hold hands.
In November, he got the itch to drive from Portland to Yakima to see us. While here, we went up to our cabin on White Pass and hiked up to the tunnel, which was closed for blasting at the time. It was a steep incline, and yes, we marveled at how well he was handling it at his age. He was the quintessential 'compliant patient,' always doing whatever his doctors advised. Walk twice daily, eat your vegetables, don't smoke, do your shoulder exercises, etc. Spreadsheets with daily blood pressure readings, exercise counts, and his latest A1C readings filled his apartment.
The Medical Details
Dad was diagnosed with Chronic Lymphocytic Leukemia (CLL) in 2012. His parents both died of complications from leukemia in 1983, just a couple of weeks apart. His symptoms were progressing slowly with intermittent oral doses of Leukeran and prednisone, then Ibrutinib in January 2017 until last December. He caught bronchitis and soon was slammed with pneumonia. He suddenly lost all stamina and strength. He could no longer walk down the hall (but he still drove to an occasional appt, or pharmacy drive thru).
In January, he was referred to a specialist with OHSU, and progressed from an oral chemo (Ibrutinib) to a more rigorous regimen. He coughed constantly, gradually draining him of all his energy. After multiple courses of antibiotics, a CT scan showed the pneumonia was better, but fluid was collecting in the pleural cavity outside his right lung. Upon draining it and testing, the fluid showed CLL and chylous, a fatty fluid filled with protein.
By this time my father, who walked up White Pass just 2 months ago, couldn't stand to get dressed. He had to use a walker. Sitting, he coughed. Laying down, he coughed.
It went on and on, weakening him physically and mentally. He was not accepted into a clinical trial for a new experimental medication, but the doctor was able to get it approved for use along with the ibrutinib. He was infused on days 1, 2, 8 and 15. Side effects were amazingly mild. No nausea, no hair loss, just a bit more fatigued after the steroids ran out about the second day following the infusion.
During this period, he was in the hospital almost every day. Infusions, transfusions (5 total), draining of the fluid to aid breathing (also 5 total).
Including the lab tests, he was poked every day, yet he never complained. It wore him down, and we started having conversations about when to stop. I asked him daily how he felt, on a scale of 1 to 100. Good days he was about 35; most days between 20 and 35.
The rituals in the hospital were exhausting. Just about when he gave up, his lymph nodes improved from a baseball sized hard mass to softer, individually-felt nodes. The doctor referred him to palliative care and discussed hospice
"Better sooner than later," he said.
When asked by palliative care what they could do to help him be more comfortable, he quipped, "How about a younger wife to take care of me!"
After the next infusion, he had a 60-score day — the highest since November.
The next day he was back to a 25.
He lost hope. This happened last week.
The chylothorax pleural effusion fluid was a fatty (cholesterol) fluid with proteins. Every time it was drained, it drained precious nutrients. My dad was losing weight daily. His appetite was decreasing, and he was put on a diet of high protein with only 10g of fat. He had to get as many calories as he could, eating fat free foods.
All the while he was working to control his type 2 diabetes with his diet. No carbs, no fat, high protein, and a million calories? That's all he needed to do...
He had consults with nutritionists and the chefs at his retirement community. Chicken, fish, no-fat. It all tasted like cardboard to him. It was stressful finding much he could eat, yet he rarely complained, and even thanked the dietary team.
When handed his fish the last evening, he quipped, "DO YOU BELIEVE IN COD?" to the server.
Coincidentally, I spent the weekend before the "End of Life Matters" curriculum at Willamette View Retirement Community (a CCRC) in Portland, wondering if we were going to have "the talk."
I stayed in my dad's independent living apartment while he was in a respite bed in the Health Center. My first night, dad and I ate dinner with a 105-year-old resident.
He ate dinner. That was a good sign.
The next morning, he ate lunch, another good sign. My brother and I hung out with him, fixing him high protein shakes between meals. Not feeling well, he slept most of the afternoon, apologizing that he didn't feel better for my visit. Around 4 p.m., feeling terrible, we called the nurse who checked his O2 level.
Amazingly, for the first time in all his 87 years, my dad took a ride in an ambulance and put on his first oxygen mask. After another CT in the ER, dad was seen by the hospitalist who had a great discussion about next steps. He would make some calls to OHSU specialists about possible surgery to repair the leak of the chylous fluid but, frankly, had little guarantee of a "better outcome," even if he survived surgery and recovery.
He was admitted Saturday night. Sunday, after extensive research, the hospitalist had an amazing conversation with my dad, sharing with him that it looked doubtful that any surgical or other intervention would result in a quality of life greater than 35-50%. Looking into his eyes, and his soul, the doctor asked dad what HE wanted to do. Lucid as ever, dad said he was so lucky to have 87 amazing years. "I shouldn't be complaining about the last three months," he said.
Dad said he was ready.
The doctor responded with the assurance that he would do ANYTHING he could to make him 100% comfortable. We discussed the logistics of hospice. His lunch of mac 'n cheese was "delightful." Dad wanted to go back to his apartment with hospice. The doctor fulfilled his promise, and more.
Dad was comfortable throughout the night, but with increasing oxygen needs. Monday morning, we met with the hospice administrators to get everything going -- hospital bed rented, O2 ordered. When we returned to the hospital to see dad, the doctor met with us for an extended time, going over and above to answer any questions we had. I shared with him that this week is "What Matters in the End" week at the med school I worked at. He took great interest in our PNWU family, and my family. He met each sibling with compassion and care, reading body language. He tailored discussions to each grieving type as they entered.
After an exam and discussion with my dad around noon, he advised us to put hospice on hold. They would be starting a morphine drip to relax his breathing. He was ready to go.
Never late, always early. That's our dad.
Our conversations over the past 24 hours had been filled with lucid memories and one-liners. He said he fulfilled everything on his bucket list. Just before I left, he said, "Ann, I thought of one more item on my bucket list: I have to go pee!"
I was lucky to be there. By 1 p.m. we were calling the relatives, still not knowing if we were talking a week or an hour.
Bea was a special guest in our room. She was a resident of Willamette View, and was "honored to help dad" at many of the daily hospital procedures. Her daughter, LaVeda, joined us at about 3:30 p.m.
Bea was a retired nurse -- the first black nurse to graduate from OHSU. She shared how she lost a son, son-in-law and husband to cancer, all in a few months. They were there as our coaches and angels. After 4:00 p.m. my brother and I were in the room, as others took a break. Suddenly, my dad sat up, staring straight ahead.
Mysteriously, my brothers and everyone else entered his room at that second, seeing me holding my dad's hand and rubbing his forehead. Bea held his head, my sister-in-law read Psalm 100, and LaVeda stood at the end of the bed. The room was peaceful. So peaceful.
It's time to go, dad.
We all looked up at the same moment, knowing he was leaving. LaVeda nodded. At that moment, we all sobbed, having witnessed a most amazing event. Our dad died exactly as he wished, in his sleep, comfortable, no longer struggling to breathe, and before the 5 o'clock rush.
That's our dad, and that's the way he wanted it.
My husband Ben's mother had a saying that she would often offer in difficult situations: "There are a lot worse things than dying."
It turns out she was right.
Chief Financial Officer
Pacific Northwest University of Health Sciences