Should Your Parent Have a DNR?

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During the six years I cared for my mom, her trips to the Emergency Room became more frequent. Depending on the issue, the first thing out of my mouth on arrival would sometimes be, “She has a DNR on file, and I have a copy in my purse.” Sometimes, people would look at me strangely or with judgment, because they didn’t understand what was behind those words – that I loved my mother deeply, and she trusted me to make her written instructions known, regardless of how much it hurt.

How fortunate I was that both my mother and father were open to discussing and completing legal papers outlining all their end-of-life decisions, not only a DNR. Particularly during a medical crisis, it removed the burden from my shoulders of having to guess what they wanted.

Until my parents’ health began to decline, my knowledge about this document was limited. It’s clearly a very personal choice – one that should be made with an understanding of the procedures involved and their limitations. Below are answers to common questions that will hopefully aid in making an informed decision.

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What is a DNR? DNR stands for Do Not Resuscitate. It states that medical personnel should not perform cardiopulmonary resuscitation (CPR) if a person stops breathing or if their heart stops beating. If no DNR is in place, then any healthcare facility or personnel is legally required to attempt life saving measures.

Why is a DNR so critical? It has to do with the effectiveness of CPR procedures, which can include mouth-to-mouth resuscitation coupled with strong chest compressions, electric shock, inserting a tube into a patient’s mouth or nose to open up airways, and even open-chest heart massage. If someone is already in a compromised state of health due to age and illness, CPR can cause more harm than good. Statistics range, but all point to the fact that as we grow older and typically, more frail, the effectiveness of CPR diminishes in terms of increasing chances of survival or improving quality of life.

Is a DNR part of a Living Will? Just like a Living Will and Health Care Proxy, a DNR is considered a form of Advance Directive. It is, however, a separate document that only relates to the two specific conditions noted earlier – when a person stops breathing or goes into cardiac arrest. Like all Advanced Directives, it should be completed well ahead of a medical emergency.

Where is a DNR obtained? Considered a physician’s order, it’s important to obtain a DNR Order directly from a physician or hospital in the state your parent resides. A DNR is not valid unless signed by both your parent and the doctor. There should also be ample time given for meaningful discussion by everyone concerned, including whoever holds the position of Healthcare Proxy. If, due to illness or injury, a parent is unable to express their wishes concerning a DNR, in most cases, their Healthcare Proxy is permitted to sign instead.

Also, different states require that the form be printed on a specific color of paper prior to being signed. For example, in Florida, DNR’s must be printed on yellow paper. If not, medical personnel can actually opt to ignore this directive.

Is there only one type of DNR? In some states, a DNR that is completed in a hospital or nursing facility is not valid if a person is discharged to home care. In this case, a home DNR should also be completed and clearly placed where it can be seen by medical personnel entering the residence. Some hospitals may even require that this form be completed every time your parent is admitted. Make sure to ask for clarification.

Can a DNR be revoked? Yes, it can be recalled if your parent chooses to do so, but any facility, physician or other individual who has the DNR on file should be notified, and all existing copies destroyed.

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There’s no question that bringing up the subject of end-of-life choices, in general, is one of the most intimate and important talks we can initiate as family caregivers, and likely the hardest. Yet, the reality is that honoring a parent’s wishes may well be the most profound gift we can give them, and in doing so, find some measure of comfort for ourselves.

Speaking Up

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Awhile back I invited my writer’s group to compose a letter to people they interact with who are not caregivers themselves. To say the flood gates opened with this assignment would be an understatement.

Responses included:

The son or daughter who never calls, or who only calls to tell you about their problems. Or maybe they rarely visit, or never ask how you or your spouse is doing?

The busy sibling who has no time to help, yet is always happy to criticize your caregiving efforts.

Numerous acquaintances who use that well-worn phrase “Let me know if you need anything,” as a sign-off to every conversation, and that’s where it stops.

The well-meaning friend who comments on how worn out you look, just when you were feeling pretty good.

The doctors who act like you and your parents are working for them, and not the other way around.

It’s clear this particular prompt struck such a nerve, and in all instances the group remarked that they stifled their responses for fear of being labeled a complainer, a troublemaker, or a bitch. I get that keeping quiet can sometimes be the better plan, but, there are many instances where we’ve simply got to speak up, because remaining silent only reinforces a status quo which is hurtful to those we love, and to ourselves.

Here are a few excerpts from my own letter, written to some of the physicians involved in my parents’ care over the course of six years. This isn’t an indictment of all doctors, for some were compassionate, generous with their time, and truly seemed to understand the challenges faced by my parents, and me as their advocate. For the record, I gladly wore the labels noted above and did share a few of these comments with healthcare personnel.

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Dear Medical Professional,

Before we begin, please fill out this ten page form of very tiny type, documenting your qualifications. Already completed this for the last caregiver? Sorry, I’ll need you to do it all over again. You’ve been waiting to see me for an hour? Well, everyone knows that a 9 o’clock appointment really means 10.

Do not automatically assume that all patients in their late 80’s have no capacity to understand what you’re telling them. Also, be prepared to answer a list of questions about side effects, expectations of recovery, etc. after you propose a risky surgery or procedure. Never use the enticement, “You’re not paying for this. It’s covered by Medicare.” Where do you think Medicare gets their money?

Please refer to elderly patients as Mr. or Ms. or Mrs. and not by their first names, or as the UTI or cardiac cath in room 202. Surviving this country’s health care system thus far, entitles them to a great deal of respect, and you are treating a person, not a condition.

Stop saying, “How are we doing?” when a caregiver and her parent finally get to see you after sitting for two hours. WE are pretty damn tired of late night trips to the ER. How are you?

Don’t look at a caregiver and say, “You need to do such and such,” as if this person has been hanging out on the couch eating bonbons and watching soap operas, all this time. Instead, look her in the eye and ask, “And how are you holding up?”

The next time a nurse brings an elderly patient the two Tylenol you prescribed for pain due to a pelvic fracture, don’t get all huffy when the daughter/caregiver raises hell and demands to speak with another hospitalist. Prescribing opiates may not be your first choice, so do your research, or call in a pain management specialist. Just don’t minimize that patient’s distress.

To close, I get that you work long and demanding hours. As a caregiver, so do I. Maybe we can work together as a team to change things in this broken healthcare system of ours. Please accept these suggestions as a token of my commitment to this worthy goal. The next batch of suggestions will be accompanied by a bill for consulting services rendered. Payment will be due within 30 days, and FYI, I don’t accept insurance.

Respectfully,

Judith Henry

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Readers, if you’re game to give this exercise a try, pen your own letter to someone, and look closely at what you’ve written. Like the members in our writing group, you may feel a sense of relief just getting these unspoken words out of your head and onto paper. But think for a minute – is there a way to present your thoughts constructively to the person you’re writing to?  For example, instead of automatically saying, “I’m fine” to the adult kid who calls with a cursory “how are you?” be honest. To the physician who barrels in with a treatment or surgery, assuming your parent (or you) will acquiesce quietly, explain you have a list of questions prepared to be answered first.  When someone tells you, “Let me know if I can do anything,” don’t just say ok. Tell them what they can do to help, and be specific.

You never know. Your words may just start changing things for the better.

 

Are You Staying Hydrated?

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For most of us, being a caregiver is more like running a marathon than a sprint, and few things can dehydrate you faster than the relentless demands that come with this role. I’m not just talking physically, but emotionally and spiritually, as well. Those oft-ignored symptoms of headaches, fatigue, dizziness, confusion or anger can all be signs that our bodies and minds are depleted and out of whack.

So, even though we may not be able to mute the cell phone, hand our duties over to someone else, or get away for a two-week vacation, there are small ways to replenish that don’t take a large investment of time, or even money.

One caregiving friend I know takes walks with her beloved dog a few times a day. Hard to say who enjoys those breaks more. Animals are always in the moment, and they can teach us to do the same. Own a feline, instead? I can’t be the only person who’s gone into a trance while stroking my cat’s pointy little face. Research shows that petting a beloved fur baby can release a spray of endorphins that make you feel more calm and peaceful.

The benefits of music have been scientifically documented. It can reduce stress, relieve pain, and help insomnia. When traveling back and forth between Tampa and Orlando to visit my folks, I found that singing along with Barbra Streisand tunes always calmed me down. Would that I had Bab’s voice instead of her nose.

Art saves. Whether it’s a coloring book for grown-ups or a half hour of scrapbooking or knitting, focusing on a creative act gives your right brain a needed boost. It’s also the perfect escape from the barrage of information and decisions that a caregiver’s left brain must deal with every day.

Pay attention to the natural world around you. Listen to the birds chirping away. Notice the plants that are throwing out shoots or flowers. Admire the tenacity of the sugar ants still marching across the kitchen counter, despite all your extermination efforts. Oops! Meant to delete that.

Practice gratitude. Meister Eckhart said, “If the only prayer you ever say is “Thank you.” that will be enough.” When caregiving, my gratitude stemmed most often from things like a good cup of coffee, 10 minutes of quiet, and freshly laundered bed sheets. Oh, yeah, and a sense of humor that allowed me to laugh when life was at its most absurd.

Make a lunch or coffee date with a friend. Someplace close so you don’t feel stressed about stepping away from your caregiving load. One thing I realized is that each friend offered a different kind of support. Some were listeners, some were doers, and others were just great huggers.

Dig in the dirt. It’s ironic coming from me, the person who can kill a plastic plant. Seriously, though, even if you’re not a gardener, there‘s something satisfying about squishing your fingers in rich loamy soil, and repotting a droopy plant or growing a few herbs outside your kitchen door. My choice is always cactus, since they thrive on benign neglect.

Chop wood. Carry water. My interpretation of this Zen expression is that familiar tasks can actually be a comfort in the midst of all the “life changes on a dime” moments that caregiving can bring. The simple act of making mom’s meatloaf recipe for dinner, or helping your child with a homework lesson can ground you in the every day sacred. And yes, it goes without saying that some tasks are more sacred than others…

And finally, it’s ok to have a good cry. Studies show that crying can cleanse our minds as well as our bodies; releasing bottled up stress hormones that can cause all sorts of negative effects. Unfortunately, I didn’t do enough of that during the years spent caring for my parents. Instead, I drowned my sorrows in cheese and crackers. Trust me, crying is definitely better for your health and your waistline.

As caregivers, going the distance requires staying hydrated in all its forms. It keeps us from hitting the wall or at least from hitting it quite so hard. The rewards of being there for someone you love can be great, but let’s be honest – sometimes “surviving” is the real prize.

Photo from gratisography.com