Avoid becoming a victim of the U.S. end-of-life care system: Choose wisely

(The author is a doctorate-prepared nurse who holds a Masters in Health Administration and has 28 years’ experience as a bedside nurse, hospital administrator, and in healthcare information technology. Dr. Wilcox is the author of How to Avoid Being a Victim of the American Healthcare System: A Patient’s Handbook for Survival (2021). He resides in North Carolina with his wife and their three dogs. – Jay Niver, editor)

The medical profession is very good at extending life past what may be the patient’s intended wishes. We have the technology to keep their bodies alive even though their brain might be dead. There are countless patients in extended-care facilities who see death as a release from the limitations of their broken bodies – people who wish they had pointed, honest discussions with their healthcare surrogate (or proxy) about what they did and didn’t want done to them if they became incapacitated.

Choosing the right healthcare proxy is very important. That person must be someone who will follow your end-of-life wishes. I have seen situations in my career in which family members have over-ridden the advanced directives. This went against what the patient wanted and took time to document. That does happen, so you need to be aware of this when you choose your surrogate. Plus, in having that discussion with him or her, you take a tremendous burden away from them. It is extremely hard to make decisions in a crisis, and having that discussion up front helps that person make the correct decision for you.

A Personal and Professional Example

As a doctorate-prepared nurse, I served as my mother’s healthcare proxy. I knew her cardiac history extensively. I knew she wasn’t a candidate for open heart surgery, that she had 11 stents in her arteries, and another cardiac event would probably be her last. Yet, when I awoke after receiving a call from an ER nurse saying they had my mother in the emergency department with a heart attack, I left “proxy mode” and went into son mode. As a nurse, I have performed many code blue events. While performing cardio-pulmonary resuscitation (CPR), I could feel ribs cracking during the chest compressions or watch as the breathing tube was inserted through the patient’s mouth and into their lungs.

My wife was a hospice nurse for six years, and I told them to code her and intubate her with a breathing tube so she could have a cardiac procedure and intervention. Thank God they called me back a couple minutes later and said her clinical picture had changed, and she was actively dying.

Let’s explore what occurred to make my wife and I, both medical professionals, step away from what my mother had so carefully outlined, discussed with us, and documented in her end-of-life care and DNR paperwork. As medical professionals, we are trained to save lives. We are trained to do everything possible to keep the patient alive and improve their condition.

With my countless years of formal education, there was never a class on how to welcome death and make sure the patient died as peacefully as possible. When I was the night supervisor at a hospital and the head of the code blue team, when I lost a patient it felt like a failure to me. There are innumerable patients living in extended-care facilities who have tracheostomy tubes to breath with and tubes in their stomachs to be fed with. These countless “victims of the end-of-life care system” were sold hope from the medical community that they could have a longer life. But the process robbed them of the quality of life that they had previously enjoyed.

I worked with an emergency department physician, and one evening we had a patient who was declared brain dead even though we were keeping his body alive using a ventilator. The physician turned to me and said, “If that is ever me, then pull the plug.” Several years later, he had a medical event in the locker room and was without oxygen for quite a while. He was rushed to intensive care on a ventilator, where he was declared brain dead.

His wife chose not to pull the plug, so they gave him a tracheostomy and feeding tube and sent him to an extended-care facility. His wife stated that a miracle would occur, restoring him to his former self. She was sold hope at my physician friend’s expense. He came into the hospital several times with various infections over the next 18 months until he passed away, robbed of any quality of life. The end result did not change, and this was not what he wanted to occur.

Resources Available to You

Thankfully the medical community does have some options available such as palliative and hospice care. My wife, who has extensive knowledge of this, said to me that many times people wait too long before they get hospice involved. There is a misperception that bringing in hospice care is giving up, and the patient is going to die. While many times the end result is death, the patient has a trained medical professional team to help the patient and their family navigate through this final transition.

My wife has also had hospice patients who got better and were discharged healthier than when they first went in. Not a lot of consumers realize that this occurs. Many people only see hospice as the gateway to death.

When you have cardiac problems, you don’t want to be seen by a podiatrist. You want to be seen by a cardiologist. When someone has carefully outlined their wishes for end-of-life care, they need trained professionals such as a hospice team to be involved.

Let’s visit my mother’s story again. I knew her next cardiac event would be her last. Perhaps, if I had accessed a hospice team to better prepare me for that phone call from the emergency nurse, I may have not gone into son mode and would have been better prepared to carry out her wishes. Over the nearly three decades that I have been in healthcare, I have seen patients’ proxies change their last wishes and the healthcare team allows this to happen. I never thought it would happen to me, but it did.

It is so important that people are educated about the American healthcare system prior to accessing it, especially medical proxies. Weighing hope, which we in the medical community sell every day, against the patient’s dignity and documented end-of-life care wishes is an extremely difficult challenge. While we have palliative and hospice teams to support healthcare surrogates, we have to do a better job of utilizing these valuable resources to better prepare those trusted representatives to prioritize the patient’s end-of-life wishes.

Many people find it difficult to discuss end-of-life care. It is extremely important, though, that you are prepared – and have prepared your proxy – for this care. Although difficult, all of us are going to die, and it can be an easy or difficult process depending on our circumstances and choices.