I recently 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 they let her son go. The neurologist recommended they take him off the ventilator. She reported that even her son and she had discussed death and he had stated that he would never want to be kept alive by machines and intervention. In spite of this, that is what they are planning on doing. “We are leaving it in God’s hands,” they say. But are they?
Katie Forster recently reported on the case of the baby, Charles Gard in the UK. “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.”
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 murders, neglectful parents, or lazy relatives. Death has become synonyms with failure. If you died, you gave 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 lead 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; a research and development process. I wonder if it isn’t a subliminal beginning of a screenplay for a Jennifer Garner movie? Rather than actually following the Hippocratic Oath, which 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.” there’ seems to be therapeutic nihilism going on.
Therapeutic nihilism is having the “cure” do more harm than good. I am addressing over zealous efforts to keep new born babies, senior citizens, and terminally ill alive. Ask yourself, have you heard of anyone dying lately of old age? Even if they are well into their nineties, the cause of death is reported as heart failure, cancer, Alzheimer’s. 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, he writes about a patient with end-stage dementia who screamed “kill me” as a feeding tube was inserted into his nose.
Very few octogenarians or even nonagenarians are hanging with their peers. Friends have died, spouses have died, they are living in facilities, not of their choice. There are exceptions, but that seems to be the rule. “Adult Day Care” centers are popping up, “Adult Living Facilities” are huge now. They are big business. The national median monthly rate for a one-bedroom unit in an assisted living facility is $3,500, according to the 2014 Cost of Care Survey released in April by Genworth Financial Inc. of Richmond, Virginia. That’s $42,000 per year, an increase of 1.45 percent over 2013. These facilities are private pay. The senior or their children will have to pay these insane prices until either the person dies or everyone runs out of money. This generation survived WWII and the depression. They paid $13,000 for a home and $3,000 for a car. They supported their family by working at a grocery store. Now? Now they are supposed to pay almost $4000 a month for a one bedroom apartment and jello? So sad.
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 ________” fill in the blank. What used to be an annoying neighbors 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.
According to an article written by Donna Cohen, Ph.D., Professor, Department of Aging and Mental Health, Florida Mental Health Institute, University of South Florida: “Older adults have homicide-suicide rates that are twice as high as younger adults. Each year more than 500 homicide or 1,000 deaths occur in persons 55 years and older, which means that nearly 20 older Americans die each week in a homicide-suicide.
What about those caregivers who are caring for children with disabilities? 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. 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 can not be predicted. Efforts to keep the child alive override the reality of what caring for this child for a lifetime may be.
On average, at least one disabled person is killed each week by a parent or caregiver, according to a Ruderman Family Foundation report that documented more than 200 deaths from 2011 to 2015. This article is not meant to justify these horrific acts of violence or cause one to sympathize with the murderer. I am addressing the mental, financial, and physical, stress that caregivers endure for sometimes a lifetime. The efforts to keep children alive by medical professionals do not take into consideration the endless care for this child.
Having shed light on this issue, 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, can not appreciate the simple joy of a simple blessing. My remarks are only intended to ask, can we let our burdens come as God intended? Natural law catastrophes afford so much suffering on its own. We don’t need man shoveling on to the pile of heartache.
In third world countries, of course, the rate of infant mortality is so far above the numbers in the USA. Poverty, lack of clean water and malnutrition leads to such a high percentage of children barely making it to the age of 5. 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 thanked the heavens, literally, that we had medical insurance! Even with, we had enormous debt for a young family with five other children at home.
We brought home a baby with severe brain damage and the inability to eat properly. That being said, we figured it out. 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. We rejoice in his presence and am so grateful for his membership in our family. He has brought more joy than heartache, more laughter than tears. We are lucky. I receive daily posts from families caring for children or suffering from earthly cares that require more than truly is humanly possible to endure. We need to think about our intervention. We have to think about death as we do life, it can be a blessing.