The term Death Panels has been bandied about, in heated moments at the infamous town halls and political conferences, as if "they" were required as a tenet of the health care reform proposed by President Obama.
This innuendo and LIE angers me a great deal. The idea that people should discuss their wishes and desires relating to the exit from this life is a good one. Don't make me, or anyone else, try to decide what you would want. And when you don't choose you put me and other healthcare providers, friends, guardians and family in just that position.
I have cared for people in all stages of health and illness including those at the end of life. I have participated in a relatively small number of codes over the years. That surprises me given how sick many of the patients I have cared for were. I have made it my call, many times, to discuss end of life care with patients and their families or guardians upon arrival if the patient appeared in extremis. There are nurses who will not do this. It's a hard discussion sometimes. Not having the discussion worried me more.
So many people act as if they will live forever. This simply does not happen. I feel comfortable calling that a fact. So let's move on, shall we?
It's 230am and 96 year old gray haired Julia is wheeled in from a local nursing home. She is on a stretcher and smells strongly of urine. Her breathing is labored and she grabs out and yells unintelligible words. The look from the attendants bringing her up from the ambulance is impassive. What do you do first?
They slide her onto the freshly made bed and stuff a packet in your hands "from the nursing home." The really nice ones will help you position the patient or help you roll her out of her diaper and help you do a quick visual for bedsores and other skin breakdown. Then they are off and Julie and you are now buddies in crisis for the night.
"Where's Linda?" she hollers. "Who's Linda?" I ask. "She's my daughter. I need her." She then begins to relate stories about Linda that clearly indicate that she is living in the past. Linda is thirty years old and your patient is fifty-two, so she thinks. She has to help Linda. She has to get things ready so the kids will get to school on time. She's on a roll and you listen for any hint of lucidity. By this time, if you are lucky, a coworker has stuck his/her head in and offered to help you get the patient situated.
After cleaning up Julia and putting up the bed rails for safety you get her vitals. She continues to breathe hard and you wonder how much is from debilitated health or a fluid overload in the lungs and how much anxiety and fear is playing into the symptoms you see. Her color is good. The stethoscope is helpful.
She's well-ventilated judging by the air she's moving; maybe she's over ventilated and physiologically overcompensating. Time for labs and trying to figure out when she last got any of the twenty meds listed on the form from the nursing home. If this mysterious Linda would show up you might find out something more than a quick verbal report from hurried attendants and a fact sheet from the nursing home.
You get orders from the doctor if you can get through to him in the middle of the night. Leave a message; dial a pager and go on with your night. You step towards Julia's room and see she is climbing out of bed, or trying to. Is this her normal or is this unusual for her. No way to know yet.
The patient has an irregular heartbeat and the doctor ordered telemetry to "see what she's doing" and an IV lock for medications. Everything is nicely in place and you are making rounds and working with other patients and you hear shrieking and find your IV handiwork is ripped apart and Julia is bleeding all over the bed and the floor.
You mentally curse the doctor who ordered the spaghetti and you start over. You save the patient from herself and hook everything back up. You round more often and marshal the help of other nurses, aides, early tray passers, housekeeping, clergy and lab in one way or another to try to keep the patient safe from her own actions. Julie is only one patient of seven or eight you are caring for this night.
It's 8am and you are very tired. Time to go home.
Pushing back tired hair out of even tired-er eyes you hear your name and Linda has arrived. She wants to know why her mother has a telemetry monitor and an IV lock. She wants to know why she is at the hospital at all. She is a DNR!
People like to think that DNR status means a do not care status. I think of it as an "if I die, let me go status." Some options that can be exercised include the DNI status which is "do not intubate." Some people prefer a "drugs only" approach if their heart stops but don't want the CPR. Give them what they want but make it possible to know by giving them a choice to make their wishes known. If your choice is "life at all cost" then every attempt at resuscitation should be made.
If Linda had been available when her mother was brought in I would have asked her if her mother's behavior was her normal or not. Sometimes this is useful but there are many family members who do not spend enough time with mom in the nursing home to see if she has a problem with something referred to as Sundowners. It is not uncommon for marginally alert patients to get more confused at night. The new environment and people, the noise and the smells, the round the clock scheduled interruptions of labs and medications and assessments all make it worse.
I would have asked Linda if her mother had ever indicated what her preference was if she were to die given her age, her breathing troubles and her propensity to make very poor choices due to confusion. I cannot rely on this patient to tell me what she wants.
I did not have an hour, right away, to dig through the paperwork and try to figure it out. In settings where you have enough staff or ancillary people who can skim the chart looking for key information its helpful, and quicker to know.
I have met some doctors who are comfortable with DNR status and even a few who would permit it in their operating rooms but many doctors are very uncomfortable with DNR status and some refuse to write the order for it on the chart. Some will not respect it although many will. There is an underlying feeling, so I have heard expressed, that DNR status ties the doctor's hands and keeps him from being able to do his work.
There are nurses who don't care for the concept either although spending a lot of time with very sick patients exposes you to many ethical and moral thoughts about quality of life. I do not recall ever knowing a nurse who wanted more quantity over quality of life. You see things when you do this sort of work.
I am the type of nurse who wants you to have your dignity and have your say. Sometimes all you can do is honor this request for someone. I cannot impose my will.
Comfort in care is sometimes all we have to offer. At some point in many lives the mantra for cure is not useful. Some health problems and, of course, agedness can not be cured.
If I choose to be a DNR I think I will have it tattooed on my forehead. At least there won't be any mistake as to my intentions should the question arise.
What about you? Are there situations you have experienced or teachings and religious beliefs that influence what you believe? Have you ever watched someone die and then, reawaken and express that she is really pissed after she was resuscitated because her DNR status was not respected and she would have to die again? I have.
Are you afraid to have the conversation periodically and let others know what YOU want?