My Life Is Dedicated to Death
A Mayo Clinic Doctor Explains What Happens at the End of Life (Well, Sort Of) [MWC Death]
I have dedicated my life to death.
For over forty winters at the Mayo Clinic in Rochester, Minnesota, I have been at the bedside with more than 40,000 patient encounters in the last stages of their lives on this earth. Held the hands of family members. Prayed with them. Listened. Answered questions (not all questions had answers, such as these: How long am I going to live? Who will be with me? Will my family forgive me? and Will I have pain?).
I am trained as an oncologist, a cancer specialist. Heart disease is the leading cause of death, but cancer is the most feared. Patients would rather be told their heart muscle is failing than that they have a mass in their pancreas or liver or lung or breast. I am also a board-certified palliative medicine doctor.
As our patients face their own death, we extend our care to them in practices called palliative care (a medical specialty known for managing symptoms and providing comfort measures) and hospice (for patients who are assessed to have just months to live and are not pursuing treatment for their terminal illness). Of course, we are happily surprised when someone rallies for reasons beyond the understanding of modern medicine, but often the road leads to a bedside and family members gathered around, consoling, cajoling, and saying farewell.
But no matter what causes someone to be dying — a dread disease, infirmity and age, a tragic accident, or most recently a cruel virus — the process unfolds in mysterious ways. Some we can understand; others we cannot.
How Do We Make Sense of Deathbed Confessions?
“Hey, Doc, aren’t you headed home?” a patient asked me one evening as I was making final rounds during my weekly rotation on what we call hospital service. I was slotted in as the attending several weeks a year, and with a top-notch nursing team and residents and fellows, we covered about forty patients at any given time, all at the end of their lives.
His nightlight was on. His skeletal head and neck sank deeply into a nest of pillows. This diminutive figure, a ninety-year-old man from a small town in Missouri who had been admitted to the hospital with advanced lung cancer wanted to talk. I wanted to listen.
He began the story of his service in World War II. “You know I was with the engineers on those islands in the Pacific. Our battalion built hangars and water systems and sewers on those little spits of land. I loved it. ’Course, I was just out of high school when the war started. We all signed up, you know.”
Between coughing spells, he told me about how he gained skills in home construction. He envisioned how cities would have housing booms once “that damned war” was over. He foresaw the baby boomers. And there he was, positioned to carve out an incredibly prosperous career once he returned to the States.
“But my dad needed me. No guys were left to work there, and the women hated it. So he wanted me back there running the store with him. I had no choice,” he told me with regret, describing his dad’s hardware store in the small Missouri town.
“So no bridges or roads or water treatment plants for you?” I asked.
“No, closest I got was selling hammers and screws. I was never happy working there.” He blamed his unhappiness on several failed relationships over the years. “Too late now to cry about that,” he said. But the sadness of those years was reflected on his face as he looked away. I knew he was deep in thought, processing what days he had left, and I quietly slipped out the door.
I never knew if he shared that regret with his children and grandchildren. But I hear many deathbed confessions and regrets.
Having been touched by these poignant encounters with the terminally ill and having maintained a clinical curiosity, for me, it is fascinating to listen to the stories of patients at the end of life. When death is near, when the eleventh-hour reprieve has been rejected by the governor, there really is no need for dishonesty.
My white coat becomes almost a priestly collar, the hospital room a confessional, and that doctor/patient interaction an opportunity to set the record straight.
Deathbed Secrets Reveal Themselves
Here are some of the themes I hear at the bedside confessional: missed opportunities, both personally and professionally; not mending fences; wasting talents; staying with an abusive partner; working hard for the gold watch and realizing too late that there was more to life; squandering chances; giving in to worry, fear, and dread; remaining in unfulfilling relationships; having estranged children or spouses; not speaking to a parent or sibling because of some long-forgotten squabble; giving up children for adoption; questioning the afterlife (especially for members of the clergy); regretting never-recouped losses (of money or anything else); feeling unvalidated because of same-sex relationships never brought out of the closet and/or alternative lifestyles never acknowledged; feeling overwhelmed by family secrets, secret affairs, or any intimate secrets never revealed.
These themes represent life’s what-ifs.
A number of patients are despondent that they didn’t have the courage to have pushed the envelope with their investments or their business activities: The shopping center that wasn’t built. The library that wasn’t finished. The political office that was never reached. A law degree out of reach. All these can weigh heavily on the souls of individuals at the end of life. Interestingly, their angst was not so much about money or the trappings of success, but, rather, that they would die thinking they would leave no legacy and soon be forgotten.
Consider Whittier’s quote: “Of all sad words of tongue or pen, the saddest are these, ‘It might have been.’” In other words, I’ll never know how good I could have been. Many were regretful that they hadn’t trained hard enough. They hadn’t studied hard enough, they hadn’t practiced enough, and they were surpassed on the corporate or professional treadmill by someone of lesser skill but greater determination.
I hear regrets about missing a special birthday party, a hockey tournament, a child’s play, that meal with friends and family, and opportunities to be with family and friends — all because of now-meaningless business meetings, business travel, or work deadlines.
There also were regrets of not having reached out to that colleague, friend, or neighbor during a difficult divorce, the death of a child, or some financial setback. So, what I heard, and what I continue to hear, are regrets about missed opportunities of not connecting with friends and family, not providing that hug or a handshake. Somehow, these actions are what most enrich the fabric of our lives. It was not about stuff money can buy; rather, their confessions were attempts to heal the wounds of our fellow travelers on the journey of life.
Another phenomenon that was equally common and always disturbing is the individual who just about reached the pinnacle of their career or profession but fell short, only to blame the coach, the manager, the agent, the boss, the tenure committee, or whichever political party was in the White House. There was no sense of personal responsibility. There was no asking the question, “Okay, this or that happened. What role did I play in this mess?”
Nevertheless, at the eleventh hour, most of these patients shared with me that when they were honest with themselves, they did realize that they were not as focused, they were not as fanatical about success, they became sloppy in their preparation. These were the reasons for their failure — it was not someone else’s fault, and it was not because of some cosmic misalignment of the stars. It was simply because they didn’t work hard enough or failed to remain focused on the task at hand.
At the bedside, in my role as medical professional, I am safe. I am anonymous, and patients feel a real need to unburden themselves to another human being regarding their setbacks and failures. I do not judge. I listen.
The life lesson for us in death is that we can all learn to seize the day and the opportunity now and never look back, to do our best, make things happen, don’t wait for “someday,” and make big dreams come true.
How to Start the Bedside Conversation
The vigil at the bedside of someone dying is a time of great drama. Emotions unravel. Past histories can become painful or comforting. Distant and alienated relatives may suddenly appear. The prodigal son returns. The banished daughter with a child comes home. And in most circumstances, legal and financial issues are never completely resolved. So what can family members do during this time of great potential peace and great potential peril?
There is overwhelming evidence for the “power of presence.” This means just showing up, without the need to say anything — even if you feel compelled to say something. Each of us has some genetic traits for compassion, and there is a fundamental human tendency to do something, even if that something is just being there. So here are some techniques I have seen work and some that don’t work.
Reminiscing about the events and circumstances, if it’s in agreement with the patient, is a powerful way of connecting: Remember that family vacation when the tent collapsed? I will always remember how you dropped me off at college. Where were we when the car broke down in the middle of nowhere and we figured out how to change the tire? I loved that trip to Ireland with all the grandkids. Tell me about your childhood. Grandma always made the best banana bread. You’ll figure out what to say and how to start the conversation.
This is not the time to talk about the bankruptcy, the divorce, the brother you hated, or any type of negativity, but if the patient is heading in that direction, you may respectfully listen.
Some people have a greater connection to their pets than their families. With the input of the appropriate administration in a hospital or nursing home (most hospices welcome the family pet), Greta the Golden Retriever can often be brought to the bedside. This may require some creative maneuvering on the part of the family, but if we are reasonable about this and the pet is a traditional companion animal rather than some wild creature, this always can be a great source of comfort. If this isn’t feasible, pictures of the pet placed on the wall or on the nightstand bring peace as well.
You should not sit on the bed without permission. Pull up a chair and just be there.
Usually at the bedside, one family member becomes the person in charge, directing the conversations, and that person needs to be acknowledged and listened to.
The dying process takes energy for the patient and can be fatiguing, and if this seems to be an issue, you should respectfully leave. Follow the lead of the main caregiver. Don’t overstay your welcome.
Whether it’s at home or in a hospice or hospital, the setting is less important than the atmosphere created by the family and close friends. Whether Grandma is dressed in her favorite flowered nightgown or Grandpa has photos of the “big one” caught on that Canadian fishing trip by his bedside, whether soothing music is playing or everyone takes a shift in just sitting by the bedside, almost always it is these final death vigils that the families of patients remember.
What Dying People Say and Why They Say It
“My friend Steve was dying from liver cancer. He was weak and melting away before our eyes in the hospital bed. The doctor had arranged for him to go home that day with hospice care, and his wife, Martha, was packing the small bag when I arrived.” A friend of mine told me this story and asked my guidance.
“Martha filled me in out in the hallway. The prognosis was not good at all. Steve was quite aware of what came next: the confinement to bed because he was so weak, the morphine at home, a few days before he would be gone. I chose not to visit them at their home. This was their time. I would be intruding. So I leaned over the bed and wrapped him in a huge hug. The words stuck in my throat. I think I managed, ‘Talk to you soon, Steve.’
“‘I’m sorry,’ he said.
“On the drive home, I kept wondering what he meant. Sorry for what?”
One of the end-of-life themes is being sorry. Saying “I’m sorry” can mean many things: sorry for never achieving personal greatness, sorry for moral transgressions, or sorry for putting the family through the illness. In Steve’s case, he was probably sorry that he couldn’t be there any longer, as a friend.
In my experiences at the bedside, I hear these phrases and more: “I screwed up.” “If only…” “Always know that I care.” “I apologize for the opportunities I missed to do the right thing.”
If there is anything to learn from these poignant end-of-life confessions, it’s that we all must find a way to live today so we have no regrets, no what-ifs, no if-onlys.
My colleague Dr. Ira Byock, a palliative expert, offers four phrases in his book, The Four Things That Matter Most: A Book about Living, that give us some lessons for what to say during that final embrace: “Please forgive me.” “I forgive you.” “Thank you.” “I love you.” He says these life-affirming phrases carry enormous power to mend and to nurture, at the end of life or in any relationship or life situation.
Sadly, COVID ripped away any chance for many of us to properly say goodbye to our loved ones. People died alone or with an iPhone Facetime screen held in front of them as family and friends choked out their feelings. Hands were held by loving healthcare staff fully geared up in PPE. Final breaths were taken when no one was there.
I can’t think of a better reason to get vaccinated to prevent these impersonal farewells.
Edward T. Creagan, MD, FAAHPM, is professor emeritus in the Mayo Clinic Medical School and author of the award-winning books Farewell: Vital End-of-Life Questions with Candid Answers from a Leading Palliative and Hospice Physician and How Not to Be My Patient. He also blogs at www.AskDoctorEd.com.
