#advanced directive

so I’m linking this article that explores the same sentiment, how a queer person who was scared of cemeteries came appreciate the love and humanity of them through the lens of preserving Black history

and now some resources for protecting trans identities in death:

this video by Order of the Good Death which talks about how trans peeps (or anyone really) can ensure their wishes (including to be gendered and named correctly in death) are carried out

this website called Cake that helps you organize the shit you need to make sure the person you want to handle your death affairs has the legal power to do so and your wishes are legally documented

and on a more positive note,

this website translifeline that provides trans peer support and has a million resources for living your best trans life

this article about a cute Australian mouse species that was declared extinct 100 years ago but has actually been chilling on an island this whole time (because all of this death stuff can be a lil depressing tbh)

It’s here folks. I’ve seen it. And yet I’m STILL listening to people talk about having parties and hanging out with people outside of work and extended families. STILL. ಠ_ಠ We were all advised of the sacrifices necessary to avoid this outcome and yet...

It’s not just COVID. This affects anyone who has a medical need. Clinics are closing in order to divert staff to hospitals. As a result, thousands of patients across the country risk falling through the cracks without their needed checkups to maintain chronic conditions such as heart failure, diabetes, hypertension, and COPD. Inevitably those people will become more acutely ill, requiring a trip to emergency room. For example: CHF exacerbation, hypertensive crisis, DKA or HHS, and acute respiratory failure are some of the most common reasons for hospital admission and are all considered “acute-on-chronic” problems.

This time, however, if you need to be admitted, we may not have a bed for you. Neither will any hospital for hundreds of miles. If you’re lucky, you might be transferred to another hospital after hours of waiting in the emergency department. Or, you might be sent home after being stabilized with instructions to just come back if you get worse again.

How about planned surgeries to replace hips and knees, or to remove cancerous tumors? What will be the complications from delaying those procedures? Oncology patients who have a dangerous reaction after starting a new chemotherapy treatment? They are already severely immunocompromised. Can they wait in a bed in a hallway? I’ve cared for oncology patients who are routinely admitted to the hospital every two weeks in order to receive an 8-10 hour chemotherapy infusion. If those patients can’t be guaranteed a bed and a chemo nurse every two weeks for 6 cycles, how will that impact their treatment plan?

I’ve decided to share my unique perspective as an ICU RN in order to lift the veil somewhat and allow you all to grasp the reality of the situation.

🩺A typical Full Code COVID patient in the ICU, in my experience:

•A tube is in their mouth, extending down into their trachea, where it is held in place by a balloon to prevent air leaks. This tube is their lifeline and so it is secured to a device which is adhered to their cheeks to prevent dislodgment. The tube is connected to a machine at the side of the bed which forces air into the lungs at a set pressure, volume, and rate. We use a wand with suction to clean out their mouths every two hours. If needed, we occasionally thread a smaller tube through their endotracheal tube in order to suction out the gunk that makes you cough so it won’t clog up the breathing tube. If we switch modes to allow the patient to control their breathing, COVID patients will try to breathe 30-40 times a minute (normal rate is 12-20). They will also try to take deep breaths and cough. COVID makes tissue in the lungs so fragile that inflating them with high volumes and pressure will cause damage and scarring. We can’t let these patients breathe the way they want to breathe or else they will destroy their lungs and die.

•All of this is uncomfortable for the patient and so they are sedated. Medications to make them sleepy and to prevent agitation are given through continuous IV infusions. These medications also drop the patient’s blood pressure and so they also receive continuous IV infusions of medications called “pressors” which raise blood pressure. These “drips” are titrated up and down constantly by nurses to keep the patient sleepy enough to breathe with the vent, while also maintaining enough blood pressure to perfuse their vital organs.

•These pressor medications are very caustic and can burn and scar peripheral veins, so the doctor will place a central line. This is a long tube that’s threaded into a vein in the neck to almost reach the heart. In order to closely and accurately monitor blood pressures, we will use another long tube that’s inserted into an artery (either wrist or groin). That line continuously measures the average arterial pressure and nurses adjust those pressors based on that number.

•When your body is very sick it has trouble self-regulating to achieve homeostasis. Your kidneys are one of the first organs to suffer damage when you are very sick. Healthy kidneys help regulate blood pressure, electrolytes, and the acid-base balance of your blood. In the ICU we have to regulate all of that for you. We draw blood to check labs frequently, sometimes hourly, to monitor: how well you are getting oxygen in, how well you are breathing carbon dioxide out, how well your body is managing your acid-base balance, your electrolyte levels which will cause cardiac arrhythmias and even brain swelling if they are too high or low or if they change too quickly, blood clotting factors, level of waste products in your blood, etc. The nurse is constantly drawing these labs, reading the results, and giving medications or making ventilator adjustments to correct imbalances.

•Because the patient is asleep and has a tube in their mouth, they are unable to eat or drink anything. We put another tube in the mouth with the vent tubing, but this one goes down the esophagus and into the stomach. We then attach it to suction to remove gastric contents, use a syringe to administer medications, or hook it to a pump with a bag of liquid nutrients called “tube feeding” that will slowly trickle in just enough fluid (20 mL/hr) to ensure your gastrointestinal tract stays active and you have enough calories to meet your basal metabolic needs (the amount of calories your body burns by lying in bed).

•Because you aren’t eating or drinking or moving and the sedation medications are making your bowels sleepy, we give you laxatives to keep you pooping. Since your diet consists of a bag of liquid calories, it comes out of you much the same way. So we even have a tube for that, called a rectal tube (or “fecal containment device”) that’s held in place by a balloon in your butt and your poop just runs into a bag.

•It’s important for us to monitor how much urine your kidneys produce each hour. In order to be as accurate as possible, we insert a tube into your urethra which is held in place by a balloon in your bladder. Urine runs continuously into a bag where it can be assessed and measured.

•We monitor the heart via 5 wires stuck to the chest that give us a continuous visual representation of the electrical activity of your heart. COVID damages cardiac tissue and so arrhythmias and cardiac ectopy are common. If your heart beats too fast it can’t fill with enough blood to maintain your blood pressure, so sometimes we need to add even more continuous IV medications that prevent the heart from galloping off or doing too funky of a beat too often. The heart can sometimes be so damaged that it can’t squeeze effectively either, so we use other IV drips to help the heart beat and prevent it from giving up entirely.

•When we’ve done all we can do and the patient is still not improving, we will try “proning” and/or paralyzing. Medically paralyzing involves giving a continuous IV drip that stops muscles from being able to contract. This removes the extra oxygen demand of muscles, maximizing the oxygen that the COVID-damaged lungs can process. We need to give the least amount of paralytic medication necessary to prevent long-term complications. We are able to check the degree of paralysis by attaching electrodes to the patients face or wrist, sending electrical pulses (like a bark collar does), and then counting the muscle twitches. Paralytics also affect the body’s ability to create tears, so we need to pry open your eyes to administer eye gel regularly.

•Putting a patient in a prone position (on your stomach) helps by increasing blood flow to different areas of the lungs. It takes 5+ people to roll a patient VERY CAREFULLY onto their stomach without pulling out any of their tubes or lines. These are very sick patients and sometimes the movement can be too much of a strain on their heart and lungs. It’s a delicate, time consuming process. Patients remain proned for 16 hours, then returned to their back for a few hours. We may repeat the process again several times over the next 2-3 days, depending on if it is helping or not.

So how does this COVID patient get out of the ICU? Rarely, a patient improves enough to be awake and off sedation with the vent settings allowing breathing at the patient’s own rate. If the patient continues to improve, they are extubated (breathing tube out) and moved to a progressive care unit in the hospital to continue recovery. Unfortunately, the patient will often return to the ICU after only a day or two in the PCU. They deteriorate again because of all those COVID complications: heart damage, clotting (in lungs, legs, brain, etc), worsening pneumonia, etc. They can also develop complications that occur just from being hospitalized, such as: MRSA, cDiff, ventilator-associated pneumonia, bloodstream infection from the central line, UTI from the urinary catheter, peripheral limb ischemia from high doses of pressors, delirium (confusion/hallucinations), or injury related to falling.

•If the patient is still requiring mechanical ventilation after about 10 days, the next step is to have a surgeon create an opening in the neck called a tracheostomy so the ventilator can be attached through the hole in their neck. This way they can have long term ventilator support while continuing to attempt treatment. These patients are then transferred to a long-term acute care hospital where they will have to survive months of therapy to try to optimize their quality of life. After their prolonged hospitalization they will need to learn to breathe on their own again, swallow again, walk again, and learn how to take care of themselves as much as possible again. If they survive all of that then the patient will next move to a rehab center or nursing home. By this point, many do not survive due to new complications, the stress of prolonged sickness and comorbidities, or because the patient and family decided to pursue comfort cares instead.

🩺Some real talk here because knowledge is power:

I encourage EVERYONE (regardless of age or current health status) to fill out a Healthcare Advanced Directive, and choose who will make medical decisions in the event you are incapacitated. Consider your wishes NOW, and make sure you also know what your parents, grandparents, and spouse want. If your family member is hospitalized with COVID-19 and becomes so sick that even BiPAP is not helping, the doctor will ask you to make a decision between invasive mechanical ventilation (and everything that I described above) or “comfort cares.”

The specifics of “comfort cares” is individualized, but it essentially focuses the plan of care to acknowledge the patient’s decision that their quality of life is more important than extending it artificially without reasonable chance of recovery. The doctor prescribes medications to ease anxiety, and pain and the patient eventually passes away naturally without aggressive measures like a breathing tube or chest compressions. Families can be present with their loved one via telephone or Zoom video, though visitor restrictions may be eased for end-of-life patients, depending on the facility.

If you already have existing health complications (comorbidities) that make your chance of recovery from cardiac or respiratory arrest unlikely, you are able to let the doctor know from the beginning whether you are okay with CPR and a breathing tube, or if your wish is to make your code status DNR/DNI. DNR means that if your heart stops beating, you don’t want us to do chest compressions or shock your heart to try to restart it again. DNI means that if you can’t breathe on your own, you don’t want a breathing tube in your throat with a machine to breathe for you. You can choose one or the other, or both. You can also change your mind at any time, revoke your code status, and be considered a Full Code again. Full Code that means that we do everything medically possible to keep you alive, including breaking ribs during CPR, and putting a tube down your throat.

It’s important to not only have in mind what your own wishes are, but to discuss with your loved ones about their wishes. Very often, patients are either unconscious or too sick to communicate clearly and so the doctor will ask the next-of-kin or Healthcare Proxy to make the decision. Don’t make that emotional moment be the first time you think about it. And don’t put your loved ones in that position either. Have a conversation, put it in writing, and free them from the burden of that decision.

Feel free to ask me if you have questions and I will answer them to the best of my ability.

Anyway, amused myself here;

Her family overthrew her Do Not Intubate code status on Christmas Day and she has been on the vent since.

Yesterday, they chose to finally make her a DNR but refused to take her off the vent. This is the last thing she would’ve wanted.

In a very unsettling development in the COVID-19 pandemic, the Washington Post has an article in its March 25, 2020 edition that reports that some hospital systems in the United States are considering imposing Do Not Resuscitate (DNR) orders on all patients who are admitted with the viral infection.

The implications of this for all of us are worth noting and talking about. If we have advance…

Where Could I Go But to the Lord?

Post Date:

Monday, 2017-11-13 SCRIPTURE

From:

2 Samuel 22:2-4 (TLB)

Text:

2 “Jehovah is my rock, My fortress and my savior. 3 I will hide in God, Who is my rock and my refuge. He is my shield And my salvation, My refuge and high tower. Thank you, O my Savior, For saving me from all my enemies. 4 I will call upon the Lord, Who is worthy to be praised; He will save me from all my…