A flood of fresh tears flowed as I thumbed through the twenty-eight page document. The Medicare “Summary Notice” coldly spelled out the amounts paid to the mile-long list of medical providers. I couldn’t help but re-live the experience of dad’s final days as I moved chronologically through the papers. The final ER visit. Multiple blood draws. An electrocardiogram. Numerous ex-rays and a CT scan. The chest tap and chest tube. The ambulance ride back to the nursing home. The physician’s final visits.
Perhaps what stood out most was the ER doctor’s description: “Emergency department visit, problem with significant threat to life or function.”
Dad was, indeed, gravely ill when he landed in the emergency room in mid-November. His white blood-cell count was sky-high, indicating something was seriously wrong. When I arrived at his bedside, I couldn’t help but look at his frail body and think that we might not be there had it not been for a snap decision made by a physician a month earlier.
In October dad had been admitted to the hospital for overnight observation after taking a fall at home. Since no serious injuries were found, the hospitalist prepared to discharge him. Part of the process included making a list of dad’s routine medications. Without knowing my father’s medical history, the doctor wrote to discontinue the diuretic medication dad had been on for years to keep fluid from building up in his body.
When dad was admitted to the rehab wing of a nursing home for short-term physical therapy a couple of days later, that medication list followed him. The attending physician chose to follow the hospitalist’s recommendation. Though I voiced my concern, the doctor felt the medicine was no longer necessary because dad’s legs and feet showed no signs of swelling.
That decision unleashed a nightmare. Stopping the diuretic (and not starting it again for nineteen days) led to a chain-reaction of medical calamities, including congestive heart failure, painful leg and feet swelling, multiple blood clots, the onset of foot ulcers that became infected with MRSA, and a blackened, gangrenous toe. (See Trusting God When People Screw Up for more details.)
Dad was weakened even more by the ordeal, which no doubt contributed to another fall in early November. I received the obligatory call notifying me that dad had taken a tumble in his room. I was assured that he was fine. The nurse said they would implement their “fall protocols” and monitor him.
Only he wasn’t fine. Dad had cracked three ribs. The heavy blood thinners he was on (because of the blood clots that had formed from taking him off the diuretic) had caused him to bleed internally into his chest cavity. It was only when the resulting infection caused a change in dad’s lab tests did the nursing home finally realize that something was wrong – nine days after the injuries occurred. Hence, dad and I found ourselves in the ER once again.
Two liters of accumulated blood were crowding out dad’s right lung, causing him to have trouble breathing. A hemothorax, they called it. When dad was moved to an inpatient room, the doctors almost immediately began pushing for decisions: “Do you want to insert a chest tube to remove the blood, or put him on comfort care?” I knew from my mom’s end-of-life experience that what they were really asking was, “Do you want to treat the condition or let nature take its course?”
I was stunned at how quickly things had come to this. The power of life and death landed on my shoulders like an anvil. Thankfully I didn’t have to bear the burden alone, and immediately called my out-of-town brothers. Our initial decisions had to be made over the phone as they scrambled to make travel arrangements to come to the hospital. We approved the chest tube and IV antibiotics, but continued to be faced with the weight of deciding how much additional treatment to pursue.
The doctors gave us little hope. Early on, dad’s primary care physician stated, “I think this is the beginning of the end.” For three days we agonized with dad as he painfully suffered. He was no longer able to speak. He couldn’t swallow without choking. He pulled in agitation at the IV’s and wires attached to his emaciated body. It was torture watching him struggle, and our hearts were breaking.
We turned to Dad’s living will as a resource, but it was not much help. He had marked a “middle-of-the-road” approach – allowing some reasonable procedures (like antibiotics), but not wanting to be treated with all means possible. Since dad was no longer able to communicate his wishes, we couldn’t ask him first-hand.
The chest tube procedure, though excruciating, successfully removed the accumulated blood in dad’s pleural cavity. The antibiotics even showed signs of beating the latest in a series of infections. But dad was overall extremely weak with multiple risk factors. He still couldn’t swallow safely, which meant he couldn’t take food, medication or water orally without potentially aspirating. His living will clearly stated he didn’t want tube feeding, but it didn’t address the option of IV nutrition.
We agonized between the tension of wanting his suffering to be over and holding out hope that he might improve with more treatment. But we also knew that the treatments themselves would cause additional misery, and at best his resulting quality of life may still be very poor.
I longed to flee the responsibility of deciding dad’s fate. I confess I even hoped something sudden would end his life, like a pulmonary embolism they kept warning us could occur. But that didn’t happen, and we were left with the sacred burden of making the choice for him.
His doctor advised, “Either decision (to treat or not to treat) is correct – you can’t make a wrong choice.” The perfectionist in me couldn’t accept her statement, thinking one choice had to be better than the other.
The social worker implored us to consider what dad would want, not what we desired. In considering her advice, I knew first-hand that at age 93, dad was more than ready to go home to heaven. The night before he was admitted to the hospital, he told me very clearly that he knew his time was near and he was looking forward to seeing Jesus (see Dying Peacefully).
I cried out to God for wisdom, and dozens of friends joined the concert of prayer for our family. My heart was telling me it was time to let dad go, but the medical facts were not cut and dry.
Initially my brothers and I were not all on the same page. Eventually, however, we soberly came to the consensus that the most merciful and loving thing to do was to cease further treatment. Dad was transferred back to the nursing home where he would receive “comfort care” until he passed away.
Staying the course once that decision was made, however, turned out to be the hardest thing I’ve ever done. I assumed that someone as fragile as dad would die fairly quickly once IV fluids were stopped. I was wrong. Dad had already gone several days without food. He lasted six more days without food or water.
Day five of six was the toughest. Although dad had mercifully slept most of the day before, on day six he seemed to rally and was alert for hours – even repeatedly kissing my hand when he saw me.
I was horrified. His body was stronger and more resilient than I had ever imagined. It seemed like what was ending his life now was not an illness or injury, but the deprivation of food and water. In stark terms, it felt like we were killing him.
Part of me wanted to scream – “I’m sorry dad! Quick – let’s get a doctor to hook up an IV! Let’s give his body a chance to live!”
But I didn’t. I could see that dad was at peace with what was happening. He wasn’t fighting it. He wasn’t questioning it. He wasn’t angry. Although his body was taking a long time to shut down, he continued to demonstrate unwavering faith. I knew dad was trusting God’s timing, even on his death bed.
Still, it was killing me.
That night, the tide changed and dad slipped into a semi-comatose state. The next evening, he crossed the finish line and the bedside vigils finally ceased.
I’ve lost count of how many people have tried to comfort me with the well-meaning words, “His suffering is over now.” “He’s in a better place.” Both are true, but I have still tortured myself with second guesses.
“Could I have done more to prevent the chain-reaction of medical issues that contributed to his decline?” “Did we make the right decision to cease treatment, which ultimately ended his life?”
As I have wrestled with these thoughts, I have concluded that it comes down to one fundamental question: Do I believe that God ultimately holds the power over life and death, or not?
In the rawest days of my grief, two Scripture verses jumped out at me:
“All the days ordained for me were written in your book before one of them came to be.” Psalm 139:16 (NIV)
“I know that you can do all things. No plan of yours can be thwarted.” Job 42:2 (NIV)
As I pondered my rage over the medical providers’ errors and pummeled myself with doubt over our choice to end dad’s treatment, I began to ask myself, “If it was dad’s time to die, could anything have prevented it? If God knows the exact length of our days before we are even born, and no plan of His can be thwarted, then what makes me think that I, or any other human, could have changed the timeline of dad’s life?”
Even harder to process, I began to think, “What if the mistakes and the imperfect care were part of achieving God’s ultimate plan? What if making the choice to cease treatment was exactly what was supposed to happen?”
We don’t like to think that God’s will can include human mistakes, suffering, or even death. But if God doesn’t hold the authority to both prevent and permit such events, then He really isn’t all-powerful.
When tough times come, we are faced with the opportunity to trust God, no matter the outcome. If we believe that God is truly sovereign and good, then everything He ordains in our lives is ultimately best and comes from His heart of love. Even the stuff that seems like it might initially destroy us.
As Oswald Chambers puts it, “The things that happen do not happen by chance, they happen entirely by the decree of God. God is sovereignly working out His own purposes.”
I’m beginning to look at the chain of events that contributed to my dad’s death through the lens of God’s sovereignty and love. My perspective is starting to evolve as I realize no amount of effort to control the circumstances could have (or should have) changed the ultimate outcome. It was dad’s time. He knew it. And he was ready. This realization is beginning to silence my second guesses and self-imposed guilt.
It’s also opening the way for grace to bathe the anger I have felt over dad’s imperfect care. I know that the medical administrators, doctors and nurses never intentionally meant to cause him harm. Were poor decisions made? Yes. Was their monitoring, follow-through and responsiveness top-notch? No. Did they collectively fail from a medical standpoint? Yes. But did any of these things occur outside of God’s will? No!
I will always remain cognizant that dad’s care could have been better. However, by faith I am choosing to trust God’s higher plan and forgive the medical establishment. I am also trying to extend grace to myself, knowing that I tried my best to help dad. These steps are critical in order for me to experience healing.
As Johnson and Randolph state in their book, Nourished, “Often it is not the actual event or person that keeps on hurting us, but our thoughts about the event or person instead. They may have hurt us once, but by rumination, we reinjure ourselves again and again.”
It’s time for me to stop ruminating and reinjuring. As I choose to reframe my dad’s death in light of God’s higher plan and goodness, I am gradually beginning to feel a toxic cloud of blame and failure lift. I am starting to inhale deep breaths of peace with each honest effort to trust God’s sovereignty. And I know that’s exactly what dad would want. It’s almost as if I can hear him singing one of his favorite choruses: “In His time, In His time, He makes all things beautiful, in His time.”
“For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord. Isaiah 55:8 (NIV)
“Be still and know that I am God. . .” Isaiah 46:10 (NIV)
“The Lord works out everything to its proper end . . .” Proverbs 16:4 (NIV)
“In their hearts humans plan their course, but the Lord establishes their steps.” Proverbs 16:9 (NIV)
“Oh the depths of the riches and wisdom and knowledge of God! How unsearchable his judgments, and his paths beyond tracing out!” Romans 11:33 (NIV)
“I am the Living One; I was dead, and now look, I am alive for ever and ever! And I hold the keys of death and Hades.” Revelation 1:18 (NIV)
“And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.” Romans 8:28 (NASB)
“For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.” 2 Corinthians 4:17 (NIV)
“Deep grief . . . takes making the decision to stop asking for answers and start asking for perspective.” – Lysa Terkeurst
“Try saying, ‘I trust you, Jesus,’ in response to whatever happens to you . . . think about who I AM in all My Power and Glory; ponder also the depth and breadth of My Love for you. This simple practice will help you see me in every situation, acknowledging my sovereign control over the universe.” – Sarah Young in “Jesus Calling”
Jane, thank you so much for sharing so eloquently the wrenching process you went through – and continue to go through – of dealing with your dad’s death.
You heart-felt, honest and vulnerable sharing once again–and the rawness of the reality of your experience–it moves me. Your choice to trust even though it hurts is an example to me and to whoever will read your blog. Thank you for walking through the pain again to look for truth and for the One who loves you so much–to show us that it is possible to see anything through the lens of God’s love and sovereignty. This is the kind of faith-clarity that only happens with great suffering, and you have beautifully written, expressed your heart, and shared truth that hits at our core as humans in this world of pain.
I wish I new what to say to bring you truly to peace, Jane. This was heartwrenching to read, but I am glad to see it ends in hope. The verses you chose to end with were especially meaningful. May God’s peace and grace continue to heal your heart.
Thank you Jane for the poignant reminder of both God’s sovereignty AND goodness…in real life.
Thanks for letting us be a part of your journey, Jane. It is a journey and you are on it with the One who knows the way.
Thank you Jane. What you have been sharing about your dad is helping me get through my own trying times with my mom.
Collette – Thank you for your comment! I am very sorry your family is going through trying times with your mom. My prayers are with you.
Thank you, Ellen! I am grateful you are a part of my journey! It is so comforting to know we can trust God to show us the way. As my dad would often sing, “My Lord knows the way through the wilderness, all I have to do is follow . . . “
Yes! It’s so important to remember God’s love and goodness is intertwined with His sovereignty!
Thank you for your kind words, Lorna, and for feeling my pain with me. Yes – hope lives, and God’s peace and grace is dynamically at work.
Thank you, Kelly B! You are an example to me in demonstrating faith in great suffering! Thank you for being a great encouragement in my life.
You are welcome, Geoff! Thanks for being a faithful reader!
Thank you for sharing my beautiful sister..I pray God’s peace over you. ❤❤
Jane…such a wonderful article on your reflection of the events that preceeded your dad’s death. Juler
Thank you, Deborah. God’s peace to you, as well!
Thank you, Juler!