A publication of the Kentucky Center for Public Service Journalism

Lyn Hacker: Do Not Resuscitate and other end of life decisions — think about them now, while you can

Share on FacebookTweet about this on TwitterPin on PinterestShare on LinkedInShare on StumbleUponShare on RedditEmail this to someone

The death of much beloved rock icon, Tom Petty, and maybe the violence in Las Vegas has brought up some serious considerations of the concepts of DNR or Do Not Resuscitate Orders. DNRs and Advance Directives are not things that people tend to think of until they get much older, which might be unfortunate. It seems the younger you are, the more resistant you are in thinking something catastrophic might happen to you. But it is the very truth of life, that life can be much shorter than it seems, and can suddenly be threatened, often in the blink of an eye. The resultant chaos can confound attempts at saving a life and leave a family and/or loved ones in painful confusion over last minute decisions, trying to second guess what their loved one might have wanted.

I’ve found people have romantic notions about end of life decisions. They’ve perhaps seen a loved one, friend or relative lie in a hospital bed, hooked up to countless wires and tubes, and have shaken their heads, declaring that scenario was not for them. I have had friends, and patients, say to me, “I’m going to have DNR tattooed across my chest.” They seek to avoid the above scenario, but in truth, they are negating any chance of surviving a near death incident. In such an incident, they might have to undergo some period of discomfort, some disability, but there is also every chance to live, love, laugh and continue to enjoy life to its fullest another day. I’ve also heard patients speak of how they didn’t really appreciate life until they had experienced such an incident, a “near death experience.” It was only after they almost lost their life, they said, that they realized how precious it was. Life took on a new meaning for them.

Being a respiratory therapist, I’ve had a fair amount of experience working in emergency situations, chronic care and in ventilator weaning. I’ve seen the tubes that everybody is afraid of, but I’m here to say, scary as it looks, I still wouldn’t make such an order for myself. Medical technology is amazing. We used to laughingly joke about how many brain cells we were killing by drinking alcohol – we had been told that brain cells cannot be regrown, but guess what? They can. Scientists have discovered that within weeks of a stroke, “new blood vessels begin to form, and newly born neurons migrate long distances to the damaged area to aid in the regeneration process of the brain,” according to an article in Science Daily. “Brain cells can be seriously damaged or die, impairing local brain function. But the brain is a battler.”

Mind blowing.

Over and over the other night I read one of my all time favorite songwriters, Tom Petty, was brain dead, but also that he was “clinging to life.” Those two states are not compatible. According to the National Institute of Health, brain death consists of three components: coma, absence of brainstem reflexes and apnea (lack of spontaneous breathing). If Tom Petty had been removed from life support (a ventilator usually), and was “clinging to life,” as the media was saying, he was breathing on his own, and so he was not brain dead. He had had a heart attack, they said, but they didn’t stipulate whether the heart attack was caused by a clot in a cardiac artery or by a sudden cardiac arrhythmia (SCA). Simple heart attacks, where damaged heart muscle due to an arterial blockage is the culprit, are surprisingly survivable. It’s only when you get into the SCA scenario that the odds of death increase.

Petty might have been apneic for a time and so might have suffered some brain damage. It’s quite possible if it had been a simple heart attack due to a clot in the artery, that artery could have been stinted, and the brain damage could have been mitigated by some of the newer modes of treatment such as hyperbaric therapy and new drugs coming on the market. Instead, since there was a DNR order in place, he was removed from life support and allowed to die without further intervention, and so no further chance at recovery. That is so very sad. One can only hope that we, the public, are not getting the full medical story and that there were major mitigating circumstances that warranted no further treatment of his condition. How doubly sad would it be that his life was lost because of a misunderstanding of medical protocols.

DNR orders and Advance Directives are very different things. A DNR means do not resuscitate, not under any circumstance. It means no CPR, which is simply basic cardiopulmonary resuscitation. No intervention at all, regardless of the reason. An Advance Directive, however, realizes that there are many contingencies in an incident where someone’s life is threatened and provides for those. I don’t think slapping a DNR order on your hospital records or in your doctor’s file is necessarily a good thing until you’ve read up on such things and fully understand what you’re giving up.

CPR is a very valuable medical intervention. It is the basic life-saving technique you would use if you were golfing with your friend and he or she had a heart attack, or if someone was in a wreck, or had a drowning accident, or if a loved one overdosed on drugs, or if a baby (kitten, puppy, calf, foal, etc.) was born not breathing. There are a slew of circumstances where it’s entirely feasible one’s heart could be started again and life could go on after a little intervention. A paramedic would naturally perform CPR on an unresponsive victim, and it may be that the paramedics did perform CPR on Petty when they found him unresponsive at his Malibu home, thus nullifying the order from the onset.

Sometimes people stipulate a do not intubate order (DNI) thinking to prevent going on a ventilator. But without intubation (putting a tube into one’s lungs), it is really hard to maintain a patient’s airway and so basic CPR can be unsuccessful. Ventilator support does not have to be forever, and many times people can be on it for a period of time and then come off to live perfectly normal lives. One can always pull the plug.

CPR does have some issues. It might cause the breakage of ribs in extremely elderly people whose bones are already frail and easily broken. This could lead to a condition called flail chest which is a precursor to pneumonia. Contacting your local American Heart Association is one of the best ways to learn CPR and when to use it, and in the process make yourself extra useful to your community. You can learn basic techniques there, as well as special ones such as CPR to pregnant women, to children, babies and pets. Most everyone is able to perform CPR.

About the only time I could understand a DNR order is for a patient for which there is no hope of continued life, and if that someone was suffering terribly from some sort of horrible disease where survival was not possible, and that they no longer wished to fight anymore. It should always be the patient’s personal decision though, and not dependent on what a doctor or family members might want. It may be that the most important document you put on file with your doctor, your family and your local hospital is not a DNR but an Advance Directive instead.

An Advance Directive is a document that “makes provisions of health care decisions in the event that, in the future, (a person) becomes unable to make those decisions. There are two main types – the “Living Will,” and the “Durable Power of Attorney for Health Care,” according to the Patient’s Rights Council.

To help with this, an organization called Aging With Dignity is offering a legally valid Advance Directive called “Five Wishes” on their website for a mere five dollars. There is even an on-line version. According to their organization, which is recommended by the AARP, “Five Wishes is used in all 50 states and in countries around the world. It meets the legal requirements for an Advance Directive in 42 US states and the District of Columbia. In the other eight states your completed Five Wishes can be attached to your state’s form.” Part of the mission of this organization is to safeguard patient rights, and it is available in 28 languages. According to Aging With Dignity, “Five Wishes meets the legal requirements for an advance directive in Kentucky. Just like in most other states, you can use Five Wishes in Kentucky to express how you want to be treated if you are seriously ill and unable to speak for yourself, using a document that is easy to understand.”

This document covers the five following subject matters:

1. The naming of a health care agent or a durable power of attorney for health care. This is one person who can be counted on to make the decisions you want to be made when you are not able to make them on your own. My health care agent is my good friend, who is in the medical field. I know she can understand the medical jargon and pathophysiology that is part of the decision. I also know that she is strong enough to make the difficult decisions that will have to be made if I can’t make them.

2. Wishes for life support. There are many kinds of life support dependent on the condition of the patient. If a patient needs oxygen, then oxygen could technically be considered life support, if you have to have it. Likewise with certain drugs for certain conditions. For instance, if you’ve had your thyroid gland removed or radiated, you must take replacement thyroid hormone for life, or you will become comatose and die. In that case, synthroid or a drug like it, is technically life support. Just because these things are necessary for life to continue, that’s no reason to refuse them and let yourself die. Granted, usually when one speaks of life support, they’re referring to a type of ventilator. But other means of life support can include cardiopulmonary bypass during open heart surgery, kidney dialysis, enteral (tube) feeding, etc. Dialysis is an interesting topic because it doesn’t have to be a short-term thing. Patricia LeBlack has been on continuous kidney dialysis for 39 years, having raised two children during that time. She is considered to be the oldest dialysis patient alive (The Guardian). Dialysis is often used on diabetic patients, which is one of the fastest growing patient populations in America.

3. Personal care preferences. This covers how comfortable you want to be in terms of pain management and/or hospice options. These are end-of-life preferences. According to Harbor Light Hospice, “The more that terminal patients and their loved ones know about their pain management options and the higher of a priority that pain management is made by physicians, the higher the quality of life that can be enjoyed by people at the end of their lives.” Letting these preferences be known relieves the patient or family of any sort of embarrassment or inhibition, if asking for more pain medication is needed.

4. How you want to interact with people. This means how you want people to treat you, if you want people with you, to visit you, to pray for you, if you want family around, family photographs in the room, ambient music, etc. It may also include family pet visits or pet visits from service animals.

5. What you want your loved ones to know. You can write in terms of final messages to your family and loved ones, how you feel about them, issues of love and forgiveness. Sometimes issues left over from a lifetime can hinder an easy passing, and this gives you the ability to “clear the air,” so to speak. Issues such as your funeral, burial, and organ donation can also be covered in this document.

Paul Malley, the president of Aging With Dignity, an organization that created Five Wishes, thinks of it as a “gift to your family, a plan before a crisis, to get everyone on the same page so loved ones are not left to guess. You don’t need to think about it again,” he said. According to Malley, “You don’t have to have an attorney, spend a lot of money. You can think through the questions and ask that it be included in a medical chart.” You can also copy it and give copies to those that might need to have them, like your attorney, or other family members. Five Wishes costs a grand total of $5 to download from agingwithdignity.org, and copies are available for $1 each for group organizations. The website is well worth a visit regardless of your age and/or health.

Most of the time we’re not given the luxury of knowing when our time may come, but for me, I will not “go gentle into that good night,” as Dylan Thomas cautioned us. He maintained that “old age should burn and rave at close of day,” and encouraged us to “rage, rage against the dying of the light.” All well and good if we’re conscious and have that choice. But what if our consciousness has temporarily left us? Is there someone around we can count on to speak for us, or should we leave ourselves at the hands of strangers? And just because we cannot live the way we used to, is that a reason to give up on living? Is it okay to live hooked up to wires and tubes for a certain period of time, if there is a possibility, however slight, that one can leave them at some point in time and continue life another way they can get used to living? In other words, is life worth fighting for?

I would look to our soldiers for that answer.

“‘Nuff said,” as my Mom used to say.

lynhackermug-150x1501

Lyn Hacker is a Lexington native raised by Appalachian parents to be not only educated but proficient in the living arts – working very hard, playing music, growing gardens, orchard management and beekeeping. The UK graduate has been a newspaper staff writer and production manager, a photography lab manager, a Thoroughbred statistics manager, a Bluegrass singer and songwriter, a registered respiratory therapist, a farmer, a Standardbred horsewoman, and a beekeeper. She lives on a farm in Sadieville.

Share on FacebookTweet about this on TwitterPin on PinterestShare on LinkedInShare on StumbleUponShare on RedditEmail this to someone

Related Posts

Leave a Comment