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.
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: