For maybe the first time in 3 years, my heart filled with warmth, fondness, and a kind of happy nostalgia, not with sorrow and longing, as I remembered my dad and smiled. I was thinking of when I visited him in his office at the bank when I was 8 or 9. I remembered the dark wood panels on the walls and my dad sitting at his large mahogany desk. There were several rotary phones on a side table, which he used to communicate with branches within Rio de Janeiro and across Brazil. I fondly recalled going down to the “technology” room, where his colleagues would show me some of the first desktop computers in the country. That reminded me of my first personal computer, which my dad got me a few years later. It was a CP200, a clone of the United Kingdom-produced Sinclair ZX81. You needed a cassette player to upload anything and home modems were not quite widespread yet. Despite its very basic functions compared to even a simple smartphone today, I spent so much time on it I thought I might become a programmer when I grew up (coder might be a more familiar term to the younger reader). My favorite trinket at my dad’s office, however, was the telex machine, occupying a full room of its own. It was amazing to imagine that someone in Europe or the United States was sending words we received immediately thousands of miles away (kilometers, I would think in kilometers back then. Still do, actually). The work day would finish and we would walk to a boteco, the Brazilian version of a pub, where men (back then it was mostly middle-class men who would hang out after work) would drink a beer (not me, I got a Coke or guaraná, a local soft drink) and eat peanuts, French fries, steak cut in strips, or sausage and onions.
Grief is a process. We read about it, we receive training on it, we live it.
My biggest regret? I wasn’t there the night my father died. When I said goodbye 10 days earlier, I thought he would make it to Christmas and I had tickets to spend the holidays with him and my mom. It was not to be. As he got sicker faster, requiring admission to the palliative care unit for terminal care, I changed my flight to December 14, just a few days later. It still wasn’t fast enough.
I do take solace knowing he was surrounded by loved ones and had a really good last day (as last days come). Gone were the nausea and vomiting that cut short our last trip together to the wine country in his home state of Rio Grande do Sul a few weeks earlier. He was comfortable, without any pain, and saw a number of friends and family. Besides my mom, my brother and sister, and my nephews, my uncles, aunts, and cousins all came to say goodbye. I know he was particularly happy to see my friend and medical school classmate, Gustavo, and his young boys, 6 and 3 at the time. A picture of my dad smiling was the best gift Gustavo could have ever given me. He was my proxy there that last day. For that, I’ll be forever thankful.
My brother was with him the night he died in his sleep. I can’t imagine and we couldn’t have asked for an easier passing. His breathing started to slow down around 1 AM and he stopped breathing at 4:30 AM on December 14, 2018. Hours after my 45th birthday ended, I had finally grown up.
The following day I saw 30 patients, and relished being busy while waiting for the flight home that was scheduled that evening. Ever the practical man (he opened his newsstand up to two weeks before his last admission), my dad died on a Friday morning so we could do the wake and funeral over the weekend and be back to work on Monday, as he would have expected us to do.
What is the meaning of life and death? Can we evade the Grim Reaper? Gilgamesh, Xi Huang Di, Kisa Gotami, Lazarus. Most cultural traditions have myths, folklore, and philosophical texts to help us seek the meaning of life and death. Another day I may jump into that rabbit hole. Today, I would rather share practical advice, learned as a practitioner and a son on what we can do as physicians, friends, and family when a loved one dies.
I usually follow a few simple steps. Being on the receiving end of it reinforced how important the grieving process is and reminded me, hopefully indelibly, that while we may see sick and dying patients every day, for a dying person’s loved ones this is a life-changing event they will remember forever. My family and I will always remember the kind care my father received from everyone at the hospital I trained in.
- Don’t start by asking, “How are you?” “How do you think?” is the honest response that most family members are polite enough not to voice. Instead, acknowledge the loss, the suffering, and that you can’t imagine exactly how they are feeling. Even if you have lost someone yourself, each one of us is different and therefore grieves in different ways and at a different pace. A simple “Hi!” coupled with good eye contact and the appropriate nonverbal communication are a good opener.
- Do ask about the loved one who died. But don’t push it. For some, this will bring good memories, for others it may deepen the pain. But everyone wants their loved ones to be seen and remembered as the individuals they were.
- Ask what they need. People may not know what they need yet. Ask again, be specific, be practical. Often, at the first moment, grief is disorienting. Five years earlier, when I was told by a colleague and friend at the endoscopy suite that my dad had his first cancer (of the colon), a former student of mine hugged me and walked me down to the colorectal surgery clinic where he spoke with another friend and colleague who would go on to be my dad’s surgeon, before I even realized objectively what was going on. I will always remember that.
- Connect your patient’s loved ones with those who can help further: other family members, friends, counselor, social worker, pastoral care. It takes a village. Friends and family need to be notified, funeral service arrangements need to be made and tended to.
- If family members want to see the loved one who just died, prepare them for what they will see. Always ask how much they may feel comfortable with. Most will have never seen a dead body before—my brother hadn’t before our dad died, as we had never lost anyone so close. (He’s a lawyer. While we studied on the same campus, he had never peeked into our anatomy lab, which disastrously actually had windows that passers-by could look down into, and yes, it was in the basement.) Don’t keep the children away, as long as local rules allow them to visit. Gustavo, the friend and classmate I mentioned above, brought his kids to see my dad the day he died and used it as an opportunity to normalize what we now hide. (Do read Atul Gawande’s superb Being Mortal, for a much-needed discussion on why we need to do better as professionals and as a society.)
- Allow for anger and seemingly irrational thoughts and behaviors. It is not about you, it is about your patient’s loved ones and their grief. Once, a bereaved husband bluntly told me I did not care about my patient because I was traveling away for a conference (the ASCO Annual Meeting, as it turned out) when she was at her sickest. This one hurt deep because I do feel guilty that I am not able to be around in person 24/7. I usually try to compensate by giving all patients my mobile number (you would be surprised to know that most are extremely respectful of my personal time and only use the direct line after hours and over weekends when truly needed).
- Finally, acknowledge that nothing you say will make them feel better right now. The most important thing is to be present and to listen. It doesn’t really matter if you are with them for a minute, an hour, or a day, as long as you are fully present for the time you can be and you are sincere.
I purposefully did not mention Elisabeth Kübler-Ross and the five stages of grief. While the bereaved do experience denial, anger, bargaining, depression, and eventually acceptance, the evidence does not support the existence of neat, progressive stages. They can overlap, coexist, ebb and flow, go back and forth, and be everywhere in between. Each one of us goes through our own process, which may rhyme with that of others but will never be exactly the same.
For our family, my nephew, who was 3 at the time, said it best: “I don’t want Grandpa to be a star in the sky. I want him here. I want to give him a kiss goodnight.” Today, I remembered his words as I thought about my dad and smiled. I realized I had not written much since he died 3 years ago. I hadn’t quite felt like celebrating my birthday since his death either. This year, I definitely will.
Cesar Gonzalez De Leon, MD
Dec, 18 2021 2:53 PM
thanks so much for sharing your thoughts and feelings in a superb way . Hope we can meet sometime soon to tell you in person
Gilberto Lopes, MD, FASCO, MBA
Dec, 20 2021 1:59 PM
Thank you! Hopefully at ASCO 2022?