DO I REALLY NEED A HEALTH CARE DIRECTIVE?
Many people are vaguely familiar with what a Health Care Directive is, but fewer yet concern themselves with it – even if they know they should. It’s one of those uncomfortable subjects that we’d just as soon avoid. But the reality is that every one of us – irrespective of our age – should confront these issues.
I found two articles online that I believe are helpful in impressing upon us how truly important it is to have a Health Care Directive. One was written by a doctor and another by a nurse. As you contemplate the issue of Health Care Directives and whether or not you should have one, I think you will find it worthwhile to read the excerpts provided below.
If you don’t have a Health Care Directive, who will make these decisions if you become unable to do so? Will they make the same decisions you would have made? Will they make decisions that are tied to their own interests – whether wanting to not give up on you and not let you go, or based on concerns related to finances or family dynamics? If they have to make “quality of life” decisions, will their definition mirror yours?
Without a Health Care Directive – as one doctor put it: “In the name of preserving autonomy and choice, our system leads to little choice at all. Technology takes over. We simply do everything. *** And so many patients end up dying deaths they do not want, deaths their caretakers certainly would not want for themselves.”
When family members are forced into making YOUR life and death treatment choices, they agonize over decisions that often merely drag out the dying process by excruciating days or weeks.
THE BOTTOM LINE:
YOUR end-of-life medical treatment decisions should be made by YOU;
Those decisions should be well-informed decisions;
Those decisions should be made rationally; and
They should not be made at a time of crisis.
THE DOCTOR'S PERSPECTIVE:
There is a real toll taken – on health care workers, families, and patients alike – by persisting with highly invasive medical care when meaningful recovery is impossible. The procedures that make up the daily ICU routine are exceedingly invasive and uncomfortable. Tubes are inserted through noses into stomachs and down throats into airways. Big needles are stuck into necks, chests, or thighs so that large IVs can be placed. The slang term we use for performing these procedures on people unlikely to benefit from them, “flogging,” is actually rather precise. Patients require continuous, heavy sedation to tolerate their ICU stays. They often become delirious and hysterical as a consequence.
My own most damning experience involved caring for a man in his sixties who was mentally disabled from a congenital disorder. The usual life expectancy for someone with this disorder is roughly 40 years. This fellow, having experienced unusual longevity, had become both blind and deaf. Unfortunately, he grew critically ill after an arthritis-related surgery – his heart, like his eyes and ears, had ceased to function optimally, and he just didn’t tolerate the procedure. With no family around to allow him to pass naturally, as his body so clearly indicated he was ready to do, we aggressively resuscitated him. This meant, among other things, that he needed a feeding tube.
A feeding tube, even for a person who knows why he needs it, is one of the more unpleasant procedures people undergo in the name of a healthful recovery. I have grown accustomed to a particular look of betrayal in my patients’ eyes while I am placing a tube, having warned them beforehand that it might be “a little uncomfortable.” In this case, though, there was no way to communicate why the tube would help. It wasn’t even possible to give him fair warning before we began.
And so with the help of a colleague, I shoved the tube through his nose, down the back of his throat, and into his stomach while he thrashed wildly. It was terrible the first time we did it. Then, and amazingly, considering that his arms were tied to the bed and an attendant was constantly in the room, he managed to get the tube back out, requiring its replacement. This happened on three consecutive days. It felt as though I was torturing him.
Despite all our efforts, and the pain we inflicted, the patient died a few weeks later. I felt angry and at fault. What could have been done differently? We might have worked harder to find a family member who might have allowed us to adjust the goals of his care – but when, amid the constant chaos of the ICU? And what if, long-distance from New Hampshire or California or wherever – far from the feeding tubes and needles – the indifferent relative we spent hours tracking down told us to forge ahead anyway?
And what if no family exists? Who decides then? There’s no sound protocol to cover these cases in real time. Without patients’ wishes to serve as guides, doctors are frequently trapped in a messy middle ground, where the path of least resistance for us is the path of most resistance for the patient. Keeping people alive at all costs becomes the protocol.
THE NURSE'S PERSPECTIVE:
She’d watched her husband of 52 years die on a ventilator, and followed his wishes to remain a full code. But she knew that was not what she wanted for herself.
So she wrote a Living Will, had it notarized, gave it to her doctor, told all her friends and family what she did not want. She wasn’t eligible for a Do Not Resuscitate order, as she was a healthy 89-year old, but she knew what she wanted.
“I do not wish my heart to be restarted through usage of any chemical, mechanical or physical intervention…”
Of her 6 children, one fought against her mother’s decision, and it was this child, this one dissenting voice, who found her mother collapsed on the kitchen floor.
“I do not want any external device to be used to maintain my respiration if my body is incapable of sustaining it on its own.”
The daughter told Emergency Medical Services her mother was a full code, and they untubated her on the floor of her kitchen. Once at the Emergency Room, her heart stopped, CPR was performed, and her heart was shocked back into a beat. Under the hands of those trying to follow the daughter’s wishes, the woman’s ribs cracked and broke.
“I wish to die a peaceful, natural death.”
She was then sent to ICU, where her heart tried to stop 3 more times. Each time, the broken ribs jabbed and ripped into the fragile muscle and skin as CPR was performed. Electricity coursed across her body and her frail heart was restarted a fourth time. By this time, the other children were there, but the act had been done, over and over. No Do Not Resuscitate Order was written, and the Living Will fluttered impotently at the front of the chart.
“I do not wish artificial means of nutrition to be used, such as nasogastric tubes or a PEG tube.”
Her swallowing ability was lost in the storm in her brain that had left her with no voice, no sight, no movement. A scan showed she still had brain activity; she was aware of what was being done to her – including the PEG tube that sank down into her stomach, and the trach in her throat.
“I wish nature to take its course, with only medication to prevent pain and suffering.”
The daughter who wanted the mother to remain a full code also refused to allow narcotics to be given, stating she did not want her mother sedated, since she would “wake up” when the correct medical procedures were performed. Her nurses begged the doctor to write a DNR, and he said, “the family can’t get it together, and I’m not getting into the middle of it.”
“Allow me the dignity we give to our beloved pets. Let me die in peace.”
I met her one Tuesday night, and spent that night pouring Jevity into her tube, only to suction it back out. Her legs were cool and mottled, her bowel sounds were non-existent, and her blue eyes stared blindly at a ceiling she could no longer see. The doctor refused to terminate feedings, but I held them, since there was no digestion taking place. The woman was turned and repositioned every two hours, and each time, she moaned and gurgled as her lungs slowly filled with fluid. I whispered my apologies as I did the very things to her she tried so hard to prevent.
Suctioning improved her lung function, but would make her body tremble. Over the next two nights, she slowly died, all while the daughter demanded more interventions, and maintained that her mother wanted to be a full code. We had read the Living Will. We knew better.
“Thank you in advance for helping me in the last moments of my life to have a gentle, peaceful passing.”
She had another stroke, and went back to the ICU, where she was coded until there was not enough surviving heart tissue to maintain a beat. Finally her heart was broken.
And so was mine.