End of life decisions, DNRs, and doing them the right way

I want to have a chat about end of life decisions and DNR (do not resuscitate) orders.

You might be surprised to hear that even if you have made a decision on what kind of life-preserving treatment you do and do not want at the end, your wishes might not be granted if you don’t do it the right way.

Let me give you a hypothetical.

Aunt Mary is an 80-something year old lady who moved into her new apartment about six months ago.

Her neighbors know her as a sweet, frail-looking elderly lady whom they only see rarely.

She only leaves the apartment with the assistance of a nurse, caregiver or family member. She has a great deal of difficulty walking, and uses a cane. At times, she’s in a wheelchair. When she meets a neighbor in the hall, she is pleasant, but seems to have problems with her memory and often asks the neighbor who they are, even though she’s known them for years. In conversations with you, her next door neighbor, Aunt Mary has mentioned that she has heart problems, high blood pressure, diabetes and other medical illnesses, in addition to her severe arthritis. Aunt Mary has mentioned her relatives, but you don’t know them.

Early one morning you hear a scream coming from Aunt Mary’s apartment. You rush over and knock on Aunt Mary’s door. She doesn’t answer, but the screams continue. You call 911.

Several minutes later, the paramedics arrive. They force the door open and rush in. The screams have stopped. Aunt Mary is on the floor by her bed. She is breathing, but the EMTs can’t wake her. They notice she is having difficulty breathing and start oxygen. Unable to get any information from you, Aunt Mary, or the surroundings, they try to stabilize her, then take her to the nearest emergency room.

DNR via Shutterstock

DNR via Shutterstock

At the ER, Aunt Mary’s condition deteriorates. A breathing tube is inserted, and she’s placed on a ventilator. IV lines are started and emergency meds are given, as ancillary staff tries to find out whatever information they can get on Aunt Mary. She is then transferred to ICU. In ICU, Aunt Mary experiences a cardiac arrest. She is resuscitated, but she has sustained some complications from the effects of the code, which can include broken ribs and a punctured lung, or worse.

Two hours later, Aunt Mary’s niece is located. She is horrified that Aunt Mary has been resuscitated. Aunt Mary has advanced metastatic cancer, and only has a few months left to live. Neither Aunt Mary, nor her family, wanted her to be resuscitated. They just wanted her to be kept comfortable until she died naturally.

Stories like these happen, perhaps more frequently than we’d like to imagine.

No one really wants to discuss end-of-life issues. Often, when the topic come up, people decide to deal with it later, and the discussion gets shelved. That’s understandable. Almost no one figures that he or she will wind up like “Aunt Mary.” But they do. All too often.

It’s easy to criticize Aunt Mary or the family for not having some kind of plan in place. However, sometimes even with a plan in place, problems happen. During the emergency in Aunt Mary’s apartment, even though the neighbor and the EMTs may have looked for some information, or a name or phone number, none of them may have known where to look, or even what you were looking for – a single paper, a note card, a stack of papers, a thumb drive? They found nothing.

Had Aunt Mary been in a personal care home, the outcome might have been similar. Even though the facility may have had Aunt Mary’s wishes on her chart, the on-duty staff may have been unaware of her status. The document may be missing from the chart. The EMTs and or hospital personnel may have not been able to find the document, while a decision needs to be made fast about whether to let Aunt Mary die. Even the best prepared plan may fall apart in an emergency.

What can be done to prevent something like this from happening to you, your spouse, relative of friend?

Plan in advance. Do it soon before there’s a crisis. Let everyone discuss the possible options. And what are those options?

There are several.

  • Cardiopulmonary resuscitation (CPR) or not?
  • Use a ventilator, or not?
  • What about IVs, feeding via tubes. antibiotics and other measures?

It can be confusing and frightening. But there is information that you can access that can help prevent having an Aunt Mary scenario.

Oregon has POLST (Physician Orders for Life-Sustaining Treatment), a site that has a document that allows the patient to decide what treatments he/she wants or wants to decline.

The site explains aspects of end-of-life care, and the document allows the patient to check off the desired treatments. The patient has a copy, and it’s displayed in a prominent place in the home. The patient’s doctor(s) and relatives can also get copies. Additionally, once the document is completed and signed, it is electronically filed online. The receiving hospital ER can access it even before Aunt Mary arrives there. They can see what they are permitted to do, and what Aunt Mary has decided she doesn’t want done. This can be a huge help in preventing unnecessary and, at times futile and unwanted, treatment from occurring.

Unfortunately, not all states offer something like Oregon’s POLST. You’ll need to check what, if anything, like this is offered in your state. You’ll also need to take a look at what your state allows you to do in planning for end-of-life care (for example, sometimes people think they’ll simply get a “DNR” (do not resuscitate) tatoo inked on their chest, but doctors may not recognize that as a viable form of consent — you need to make sure you do it the right way). What decisions you can make, how to document them, who needs to be involved in the decisions (patient, next-of-kin, doctor(s)) and other details.

If you can’t get the information that you need from the Internet, you might try contacting the social services department at your local hospital. They are often involved in end-of-life decision making. They may be able to direct you to online sites that might help you get the information you need.

The thing to remember is that even if you have mind up your mind as to how you want to go, your wishes might not be respected if you don’t document them in the right manner, and make them available to future caregivers.

Some other sites that may be helpful:
http://www.cancer.org/treatment/nearingtheendoflife/
http://www.nhpco.org/learn-about-end-life-care


Mark Thoma, MD, is a physician who did his residency in internal medicine. Mark has a long history of social activism, and was an early technogeek, and science junkie, after evolving through his nerd phase. Favorite quote: “The most exciting phrase to hear in science... is not 'Eureka!' (I found it!) but 'That's funny.'” - Isaac Asimov

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  • http://AMERICAblog.com/ John Aravosis

    I thought that once too, Elijah. For me, seeing family members go through what they went through showed me that there is no way I want to be kept alive if either a) all hope is pretty much lost, or b) I’m going to be a shadow of my former self (take, for example, having Alzheimers — if my mind is gone, I don’t want to be hanging around). It was an eye opener watching all of this happen to someone you know.

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  • sdguppy

    And have the hard conversations with everyone you know. Let your wishes be known, far and wide

  • SFTony22

    Pro-tip — check with the hospital, medical facility, physician, or other health care-provider/facility where you or loved one will most likely land to see what they want. in california for example, the governing statutes do not prescribe any specific form. the statutes only say that the documents must be prepared in a certain fashion and contain certain information. thus, your documents may comply with the statutes, but if the health care provider fails to recognize that the document that your attorney has drafted satisfies the statutory requirements, you (or your proxy) will need to run to court to confirm your or your loved one’s wishes. some hospitals etc want to see the directives on a particular form published by medical organizations. they just won’t honor any other document, compliant as it may be.

  • 2patricius2

    Then your hospitals must have been more sensible than others I have known.

  • Straightnotnarrow

    That’s not quite true. Having worked in two Catholic run hospitals as resident and staff physician we never worried about termination of futile efforts, either in the ED or the ICU.

  • 2patricius2

    Just a note of caution. If you or someone close to you doesn’t want to be resuscitated or put on tubes, specify that if you are going to be taken to a Catholic hospital that they don’t do these things for you. They cannot take you off once they have put you on, due to religious beliefs. If they do put you on, you have to be transferred to a hospital that is not Catholic in order to be taken off life support.

  • HeartlandLiberal

    It is important that you and your significant other complete versions of end of life directives that are compliant with each states laws. There are several Internet sites that provide links to templates you can use. Last year we each completed a multi-page document which matched our state’s laws. Then we took it to our tax accountant, who is a notary public, had her notarize our signatures, and had two of her staff sign as the required witnesses.

    It is absolutely critical that you go to that much trouble, just as you should for your wills in order to relieve your survivors of the pain and loss of probate of an estate without a will. We are at an age now where our will is 25 years out of date, and a mess. On our list for next for this year is redoing it very carefully, including how to allocate any surviving assets and value into a trust that a lawyer can disperse to our son over time, in order to insure he does not blow it all within six weeks of getting it. Seriously, such things must be taken care of if you care about what you are leaving behind and its impact and consequences.

    Unless you have the legal documents in order, it is all for naught, and your wishes will be ignored, simply because those implementing actions regarding your end of life wishes, or dispersal of your state, will be totally bound by your local state law.

  • caphillprof

    It is recommended that health care directives be placed on the refrigerator and/or inside the residence next to the front door where it can be seen with the door open.

    None of this May matter as for profit emergency rooms are known to conveniently misplace such orders. My father “lived” another nine months.

  • docsterx

    The POLST system in Oregon is designed to remove some of the problems listed below. EMTs, paramedics, nurses can follow POLST because it is a set of written physician’s orders. The patient can specify a number of treatment options that he/she wants or does not want.

    ” A POLST form is printed on brightly colored paper and is signed by a
    patient’s physician, nurse practitioner or physician assistant after a
    discussion with the patient about their preferred treatment plan. In
    Oregon, a patient can choose to have their POLST form stored in a secure
    online registry that emergency personnel can access quickly in a
    crisis.” [...]
    “The Physician Orders for Life-Sustaining Treatment Paradigm, or POLST,
    was developed by Oregon health care professionals in 1991 in an effort
    to ensure the wishes of those with advanced illness or frailty are
    followed. POLST programs have been adopted or are in development in 43
    states across the country. ”

    http://www.ohsu.edu/xd/about/news_events/news/2014/06-09-polst-orders-successfull.cfm

    “Emergency medical service (EMS) personnel cannot follow your Advance Directive during an emergency but they can
    follow a POLST Form. This is because POLST is a medical order. In
    other words, a POLST Form is a way for your health care professional to
    tell EMS what treatment to give to you. An Advance Directive is a legal
    document that does not give orders but tells the health care team at
    the hospital what you generally want/don’t want.
    Your
    health care professional (doctor, nurse practitioner or physicians
    assistant) must sign your POLST Form—they should be filling it out for
    you too! POLST is a medical order and must be signed by a health care
    professional.
    Since a POLST form is a medical order, a copy is
    kept in your medical record (and the Oregon POLST Registry unless you
    opt out) so it is easily located during an emergency. It typically hard
    to find Advance Directives.
    Almost everyone should
    have an advance directive- not everyone should have a POLST. POLST is
    intended to be used by those individuals who are seriously ill or frail
    who are nearing the end of their life.” http://www.or.polst.org/advance-directives

    http://www.or.polst.org/form-details

  • pappyvet

    When it is time for me to cross the bridge I hope to do so with as much dignity as possible. If my life , my WHOLE life can garner a few more hours with a dram fine. If not then at least allow me to show the courage of my convictions. Making that journey is How we make it is as important and personal a choice as we will ever have. The conversation may be difficult but it is the curtain call that should never be refused. The final bit of life’s poetry that should always be heard.

  • Indigo

    “Alive” is a minimalist medical condition used to justify billing Medicare or the appropriate insurance to maintain life-like bodily functions such as breathing and absorbing some form of nutrition. Not a condition I’d want to be in, to me, quality of life is much more significant that the quantity of it.

  • Indigo

    That’s one more set of good reasons to die at home even though it’s not easily planned. It’s as if one should have the DNR order posted on the refrigerator next to the instructions on where to find the will and probably a card with your cremation contract as well.

  • 2karmanot

    Bingo!

  • 2karmanot

    Define “alive.”: Non Republican fundamentalist Tea Party Christian.

  • goulo

    FWIW I’ve read many articles about how medical professionals, who often see the results of doing everything possible to keep patients alive, very often emphatically do NOT want everything done to keep themselves alive, as it’s often a miserable drawn out suffering.

    I recently read an interesting interview on the subject:
    http://thesunmagazine.org/issues/460/the_long_goodbye

    The Long Goodbye

    Katy Butler On How Modern Medicine Decreases Our Chance Of A Good Death

  • nicho

    Yes, yes it would.

  • nicho

    First things first. If your loved one has a DNR in place, do not — repeat do not — call 9-1-1. It varies from state to state, but EMTs or paramedics, once they are called, have to resuscitate. Shoving a paper in their faces won’t help. They don’t know who you are. They don’t know where that paper came from. They don’t know whether the paper refers to the person lying on the floor in cardiac arrest. When I was an EMT, our state had a system whereby someone who wanted to be DNR could get a wristband that had to be renewed every couple of months. If the wristband was current and appeared not to be tampered with, we could abstain from resuscitating — but then the question arose of why someone called 9-1-1.

    In the case cited in this post, the most finely tuned advance directive would had made no difference in the outcome. In an emergency situation, there is no time to sort out what documents are there, how valid they are, who are the people involved.

    Having said that, having clearly stated advanced directives is the best advice. Just don’t think that they will prevent situations like Aunt Mary’s. They will take effect once she is in the hospital, resuscitated once and intubated. Then, the can make her DNR for future occurrences.

  • CJTX

    When my father experienced complications from surgery, it was AGONIZING to try and decide whether he would want a pacemaker. Luckily the family was in agreement and even luckier he woke up and could decide for himself. People who knew him and/or had other beliefs objected to our wishes. Spare your families the added pain of this experience. Make your wishes clear and plain.

  • nicho

    Define “alive.”

  • Elijah Shalis

    My boyfriend and family want one of these but I want everything done scientifically possible to keep me alive.

  • bkmn

    To add, once a decision has been made it does not mean the person cannot change their mind at a later time. After my mother’s stroke the hospital staff made it very clear to her that she should make her decisions known to the staff and to family AND that she has the right to change her mind if she wants to.

    When you have a friend or relative in this situation find out what hospital they would like to go to if needed and also check to see what hospitals are closer – in an emergency the ambulance staff may take a patient to the nearest hospital that can handle the immediate needs, not where someone wishes to go.

  • http://www.americablog.com/ Naja pallida

    In our ever litigious world, hospitals and doctors tend to err on the side of providing legally required emergency treatment, no matter what documents expressing the patient’s wishes are provided. Legal decisions are above their pay grade. Unfortunately, a lot can be done by the time their corporate legal department gets around to making a judgement call, and finally allowing the person’s wishes to happen.

  • http://heimaey.us/ heimaey

    They only want you in if you’re paying a lot. People have more at home issues recovering because they’re sent home to soon. Invalids stuck in hospitals are goldmines.

  • kraftysue

    Several years ago, my 93 yr old father-in-law had a massive stroke while in a restaurant parking lot. I got the call, as his medical power of attorney and had his detailed instructions…………no respirator, no IV’s, feeding tubes, no CPR, etc……….on his chart before the helicopter arrived at the local ER. After the CT of his brain, it was determined that he would not recover. They moved him to ICU with IV’s. I first complained about the IV’s and medication and eventually about even being in ICU. It took me 3 days to convince them to stop treatment and let him go. I requested a meeting with hospital representatives after the funeral. They met with me along with the chaplain, director of nursing, medical director, and of course the lawyer. I asked if their reluctance to honor his wishes was because the document was not written correctly or because it was a Catholic hospital. I was told that the flaw in the system is that my document makes no difference at all unless the doctor writes all those things in the orders. Otherwise they are legally bound to do whatever keeps him alive. The bottom line in our discussion is that the document by itself is not enough unless you have a strong medical power of attorney to INSIST the wishes be followed and that the doctor writes these wishes as orders. It helped somewhat that I was a retired nurse but I pity the average person who has to take on “the system”.

  • trinu

    That depends on the hospital. There was a case in Texas a few months ago where they did just that. On the other hand, there have been times where they have to pull brain-dead people off life support against the families wishes because they need the machines, beds, and other resources to care for patients who could actually benefit from them.

  • 2karmanot

    Would it be too cynical to say that hospitals make a fortune on continuing zombie machine life in non-advocate cases, all in the name of humanity and righteous liability of course.

  • trinu

    When it comes to decisions like life support, it can be more complicated than just whether or not a person is willing or not to go on a ventilator. It also depends on things like, is there a reasonable chance of recovery? If I can only make a partial recovery, what would my life be like afterwards?

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