End of Life is a Difficult Decision for Surviving Family Members

Last year, I received a letter from a distraught mother whose son was in a horrific motorcycle accident. She explained that the end-of-life team had suggested that they “let her son go.” The neurologist recommended they take him off the ventilator. Prior to the accident, she had discussed death with her son, and he had stated that he would never want to be kept alive by machines and intervention. In spite of this conversation and his wishes, they planned to keep their son living with interventions. “We are leaving it in God’s hands,” they said.

But are they?

Katie Forster, Health Correspondent for Independent news in the UK,  reported on the case of the baby, Charles Gard. “Doctors at Great Ormond Street Hospital in London said it would be kinder to move the baby to an end-of-life care regime, but his parents disagree with the doctors’ assessment of Charlie’s condition and want to be allowed to take him to a hospital in the US where they hope he can be treated.”

She continues in her article, “A High Court judge, in April, ruled against a trip to the US and in favor of Great Ormond Street doctors. Mr. Justice Francis concluded that life support treatment should end, and said Charlie should be allowed to “die with dignity.”

Is Extending Life for the Patient or the Survivors?

I wonder, when did it become taboo for people to die? People of all ages should be allowed to die. Let me repeat that, HUMANS SHOULD BE ALLOWED TO DIE! More importantly, perhaps, those who authorize death should not be SUED or judged as selfish murderers, neglectful parents, or lazy relatives. Death has become synonymous with failure. If you die, you give up.

I recently heard Terry Gross interview Haider Warraich on NPR’S Fresh Air. He is a fellow in cardiology at Duke University. He is quoted as saying that “death used to be sudden, unexpected, and relatively swift, the result of a violent cause, or perhaps an infection.”  But, he says, “modern medicines and medical technologies have led to a “dramatic extension” of life — and prolonged dying processes.”

I am not suggesting that we don’t fight to survive. I’m not recommending people don’t use common sense when dealing with illnesses or physical needs. I’m addressing the seemingly heroic efforts that are beginning to resemble more of a Frankenstein science experiment or a research and development process. I wonder if it isn’t a subliminal beginning of a screenplay for a Jennifer Garner movie? The Hippocratic Oath states, “I will apply, for the benefit of the sick, all measures which are required, avoiding those twin traps of over treatment and therapeutic nihilism.” Rather than follow the oath, there seems to be a lot of therapeutic nihilism going on.

Therapeutic nihilism is “having the ’cure’ do more harm than good.”  I am addressing overzealous efforts to keep new born babies, senior citizens, and the terminally ill alive. Ask yourself, “Have you heard of anyone dying of old age, lately?” Even if they are well into their nineties, the cause of death is reported as heart failure, cancer, Alzheimer’s or other issues. The cause of death is reported as “if we only would have found the ‘cure,’ these people would still be alive!” Would they be? SHOULD THEY BE????? Dr. Warraich goes on to say in his NPR interview, “Prolonging life might sound like a good thing, but medical technologies often force patients, their loved ones, and their doctors to make difficult painful decisions. In his new book, Modern Death: How Medicine Changed the End of Life, Warraich writes about a patient with end-stage dementia who screamed “kill me” as a feeding tube was inserted into his nose.

Today, few of us have to wait for much. Amazon Prime delivers in two days. Within seconds, Google answers the question, “who was that guy that played in ________?”. What used to be the neighbor’s annoying vacation slides from upstate New York are now daily barrages of Instagram posts. Babies’ births are scheduled and ironically, so is conception. Unfortunately, man’s determination to be “in charge of all things” sometimes causes mishaps. Bad things happen, which honestly, should be allowed to play out.

I am not minimizing the pain, anguish, suffering and catastrophic feeling of choosing between letting the inevitable play out or choosing medical interventions of any means. No one deserves this experience; yet families go through it every day in various situations.

  • Horrifying accidents, such as my friend at the beginning of the article
  • Babies born with disabilities
  • Children and adults who become disabled later in life
  • Terminally ill
  • Aging, elderly and infirmed
  • And the list never ends

Charlotte Fitzmaurice fully experienced the turmoil that comes along with fighting for one to be free of pain and to “die with dignity.” In 2014, Fitzmaurice won a landmark court case in Essex England to stop treatment for her disabled daughter and end her life, freeing her from chronic pain. Her daughter, Nancy, was born blind with hydrocephalus, meningitis, and sepsis. By 12-years-old more illnesses, infections and chronic pain settled in causing her to scream and writhe in pain 24 hours a day, seven days a week. “Although I will live with the guilt forever, I know I have done everything I can for her and she is at peace,” stated Fitzmaurice.

Personally, I can speak to our experience with my son TJ. Cerebral Palsy is one of the most common congenital (existing at or before birth) disorders of childhood. Premature babies — particularly those who weigh less than 3.3 pounds (1,510 grams) — have a higher chance of having CP than babies that are carried to term. In addition, so do other low-birthweight babies and multiple births, such as twins and triplets. Cerebral Palsy is usually the first diagnosis followed by a list of other disabilities: epilepsy, blindness, feeding problems, just to name a few. Often the physical and medical needs of the child cannot be predicted. Efforts to keep the child alive override the reality of what caring for this child for a lifetime may be. It makes me question; how does one decide to “let things play out as God intended” or sustain life via unnatural means?

My words, choices and story are not meant admonish people’s choices.  The efforts to keep children alive by medical professionals do not take into consideration the endless care for a child. One cannot deny that this life was not meant for pleasure and perfection. We must all travel a path that includes hills and valleys, scarcity and abundance. We must know pain to know joy. Those who have not suffered in some way, cannot appreciate the simple joy of a simple blessing. My remarks are only intended to ask,

“Can we let our burdens come as God intended? The unexpected challenges of life we face, and the natural catastrophes afford so much suffering on their own. We don’t need man shoveling on to the pile of heartache.”

Through this article, I wish to offer that when making these choices, we need to be informed to be aware of the outcomes and the necessities caregivers and families will experience for the lifetime of the child/adult. When the answer is given to us, as it was for my friend, directly from her son, then we should definitely follow his/her wishes. There was a reason that conversation took place.

We are fortunate in this country, and I am grateful for the knowledgeable and generous medical staff that performed immediate surgery on my son to repair his physical malformations that would have resulted in his immediate death, if left alone. He was soon removed from his ventilator after surgery and just over a month after his birth; we brought him home.

We brought home a baby with severe brain damage and the inability to eat properly. That was just the beginning. We were fortunate that he did not require too much more medical intervention. He needs 24/7 care, but his care does not revolve around hundreds of medications, treatments, or supervision standing watch all night. However, our entire lives changed to a level we never expected. We figured it out through trial and error, failing, laughing, crying, praying, succeeding, rejoicing and getting more help than we ever thought possible.

About René Steelman

“Find the Strength in Your Solutions, Not Your Struggles.”

Award-winning interior designer, René Steelman knows quite a bit about tilting the balance towards solutions rather than struggles.

“Designing our lives and careers is so important because chaos is so hard.”

This is true in our living rooms, as well as living in general! Life doesn’t always turn out like we plan. Sometimes, a curve is thrown our way that mixes up the balance of our lives or careers. Sometimes those changes are jarring. They require us to take charge of our own lives in ways we didn’t expect.

As an active philanthropist and founder of Steelman Family Foundation, René strives to provide as many families as possible with wheelchair accessible vans. Partnered with United Access, SFF has contributed more than 30 vans since 2016 to families around the country, holding true to their mission, helping “Families who Roll.”

As professional speaker, author of Heaven Sent and Bent and cerebral palsy advocate, René Steelman leads audiences to sift through the challenges and strip down life’s priorities to discover and experience joyful moments. Through humor, compassion, and a take-charge attitude, René shares skills and solutions to cope, survive, live, and thrive during life’s unexpected and overwhelming circumstances.

When not traveling the country speaking or promoting SFF, René spends time with her husband, six children and many grandchildren. Around the clock, with great support, and her family, she cares for her adult son, TJ, who has cerebral palsy.  To reenergize for her next mission, she sips umbrella drinks by the pool counting her blessings.

Contact René for your next event or to inquire about sponsoring a family in need.