Respiratory Distress

Before You Wind Up In Respiratory Distress, Read This

Before You Or A Loved One Winds Up In Respiratory Distress, Read This

We are in the midst of shockingly hard times. People my age have survived the Cold War, 9/11, and wars in the Middle East, but this out-shocks them all, putting us face to face with possible imminent mortality. As President Trump warns us, “This will be probably the toughest week between this week and next week, and there will be a lot of death.” Because death might be so imminent for so many hundreds of thousands of people, now is the time we need to be talking about our end of life desires, as hard as such conversations might be.

If that sounds unbearable and scary, please read this post I wrote first—about how Death Is No Ending. See if you can let that post land before you read on, since I’m not going to expend words in this one to soften the blow, given the urgency of what we’re facing. But please listen for the softness of my voice and the care of my intention. I’m writing this post not to freak you out, but because I’m a doctor, and I care about helping people live a health span that equals their life span—and die well when it’s time. My intention in writing this post about how ventilators are not a panacea is to help you get clear on what getting on a ventilator might mean—so you can make a clear, free will choice, before some stressed-out doctor or uninformed family member makes the choice for you.

I know it’s hard to talk about death. It brings tears to my eyes to even imagine that my daughter might not have a mother next week—or that I might not have a daughter. It’s easier to just pretend we’re invincible, and this virus won’t touch me or her or anyone else I love. I don’t like to dress rehearse disaster or catastrophize when everything is still copacetic. But if we fail to at least consider possible futures many of us might face, some of us could wind up with a fate worse than death, one I feel like everyone needs to have the right to choose with intention—and with an open heart.

Please bear with me as I invite you to what will be a hard conversation. This pandemic is forcing us all to become a bit more hardy. There’s no way to soften what I’m about to say, but I hope it will sincerely help you and your loved ones, which is why I’m daring to write it. First, let’s face the reality of what we now know about this virus. Initially, experts were saying only the elderly and the chronically ill are at risk of dying. While that’s still mostly true and those folks are at the highest risk, the doctors I know are telling me this is not like the flu, that people who are young and otherwise healthy are dying too, just at a much lower rate. This means that if you thought death might be coming for others but not for you, your partner, or your children, you’re probably right. Chances are good that if young, healthy people get this virus, they will not die. But we now have enough case studies to know that this is not always the case. This may be hard to face. Maybe you’re still in shock, and the possibility of your mortality—or the mortality of a spouse, child, or parent—hasn’t hit you yet. But denying this possibility because it’s so scary to consider it could create unnecessary suffering for you and your loved ones, not to mention the front line workers that might be expected to make decisions on your behalf, should you not make your wishes known now. As hard and scary as it is to consider that anyone of us might be the next to fall to this virus, we need to be having tough conversations now in preparation for the next couple of weeks. This means talking frankly and vulnerably about end of life issues.

The War On Death

We live in a culture that goes to war on death. We fight it like an enemy and feel like we’ve lost the war when death inevitably comes for us all. But to deny the reality of our death—and the uncertainty of its timing—is to blend with a childlike, naïve part that feels like it is invulnerable to mortality. The truth is that we have no idea when our time will come—and it could come next week for some of us. This is more obvious than normal right now, but this is always true. This essential vulnerability all of us face is now in stark relief, and we cannot turn away from it.

Well, I guess we can turn away from it—with distractions, avoidance, numbing, spiritual bypassing, positive psychology, etc. But doing so could come at great peril unless you want others to make tough choices for you. What comes next is intended to help you make your own choice about end of life issues—from a calm, well-informed, conscious, mature, eyes wide open place. Please, if you feel resourced, read it slowly and carefully—and share it with your loved ones.

Why Ventilators Are Not A Panacea

I am alarmed by the way people are talking about ventilators as if they’re the next wonder drug. Anyone who thinks this way has no idea what it actually means to get admitted to the ICU, put in a medically induced coma, get a tube put down your trachea, and have a machine push air into your lungs by force. Anyone who thinks the easy solution to this pandemic is more ventilators does not have a clear picture of what actually happens. People talk as if the real problem is just a ventilator shortage. What few people are talking about is how many people who get mechanically ventilated get off the ventilator—and how many die on the ventilator or soon after being weaned off? What are their long term outcomes when they do get successfully weaned? The truth is we don’t know those numbers. Sure, some people will get on a ventilator for a day or two, their life will be saved, and they’ll be taken off the ventilator successfully, with no long term sequelae. But that is not the reality of what will happen to most people who get put on a ventilator. We should not assume that more ventilators will solve the bigger problem.

Let’s look at the limited numbers of what we do know. Probably the best-published information we have so far is from the Intensive Care National Audit and Research Center (ICNARC) in the UK. Of 165 patients admitted to ICUs, 79 (48%) died. Of the 98 patients who received advanced respiratory support—defined as invasive ventilation, BPAP or CPAP via an endotracheal tube, or tracheostomy, or extracorporeal respiratory support—66% died.

The numbers from a study of Wuhan, China, published in the venerable journal The Lancet are even grimmer. This study looked at 52 patients with confirmed COVID-19 who were admitted to an intensive care unit (ICU). Among those who were put on ventilators, 86% died. Another early study of mechanically ventilated patients with Covid-19 from China reported that 31 of 32 (97%) of mechanically ventilated patients died.

A study of 18 ventilated patients in Washington state found that nine were still alive when the study ended, but only six had recovered enough to breathe on their own. In other words, ventilators are no panacea for Covid-19.

Keep in mind that mechanical ventilation is not harmless. Even if the ventilator itself doesn’t kill you, remember that preventable medical error is the #3 cause of death in our country, as I wrote about here. Choosing to be put on a ventilator means you’re much more at risk of hospital-induced death unrelated to Covid-19, especially in the current environment, when doctors are overwhelmed, under-slept, under-supplied, and terrified of dying themselves. These conditions breed the perfect set up for medical error, and when you’re on a ventilator, any single error can mean rapid death.

I wish I had better news about what conventional medicine has to offer right now. As someone who endured 12 brutal years of education to hopefully be equipped to help save lives, it’s devastating to find ourselves at the mercy of a system that is collapsing. It’s easier to pretend all we need is more ventilators, but the truth is that the health care system has been collapsing for decades. Like the straw that broke the camel’s back, all it took is one pandemic to show us how unprepared we are for mass illness or injury, something our world is likely to face in the near future as many conditions brew to create natural disasters, pandemics, and biosphere destruction. Now is the time for us not to collapse in helplessness, but to rise to the challenge together.

Part of rising to this challenge means we need to talk about death, not as the enemy, not as something to fear, but as something to prepare for since it will come for all of us one day. I know this reality check is hard to hear, but please try to stay with me, so you can make informed choices for yourself and your loved ones. This may feel brutal right now, but trust me—as a doctor who worked on the front lines in urgent life-and-death situations for more than a decade, I can assure you that it’s better to have these conversations when everyone is healthy and calm than when someone is wild-eyed and gasping for air, and the conventional medical default is to resuscitate imminent death at all costs.

Four Ways To Die

If you die at home, you’re either dead, or you’re alive. But that’s not the case in the hospital. In the hospital, there are at least four ways to die—respiratory failure, cardiac arrest, brain death, and starvation. If you can’t breathe because you’re in respiratory distress, you will not get enough oxygen to the brain and heart, so the heart and brain will die soon after you stop oxygenating your blood—unless you’re put on a ventilator. Make no mistake about it though. If you’re put on a ventilator, you have already died one kind of death—a respiratory death—and you have been resuscitated by a life-saving intervention.

This is not a harmless intervention, especially in the face of Covid-19. Please read this wonderful New York Times article describing exactly what happens if you do get put on a ventilator. It behooves you to make a choice now—and share your choice with your family—about whether you would want to be resuscitated with a mechanical ventilator should you wind up in respiratory distress. You may not have that choice. If there are not enough ventilators, ICU beds, and critical care doctors to offer you this intervention, you will most likely die soon of cardiac arrest, should you wind up in respiratory failure. Many hospitals are not “coding” cardiac arrests in Covid-19 patients because of the high risk of transmission to health care providers in a “code blue.” But assuming you have the choice of being put on a ventilator or of being resuscitated if you have a cardiac arrest on a ventilator, it’s important to understand that:

  • You might die on that ventilator, isolated in a glass ICU room, saying goodbye to your family on Facetime—or not even having a chance to say goodbye—instead of dying at home.
  • You might die on that ventilator as the result of preventable medical error, which is the #3 cause of death in the US.
  • You might get your life saved only to have doctors discover that you are brain dead because of lack of oxygen to the brain during your respiratory distress.
  • If you didn’t have brain damage because of lack of oxygen before you got put on a ventilator, you might have a cardiac arrest on the ventilator, get “coded” and wind up brain dead because of oxygen deprivation during the “code.”
  • Should you get weaned off the ventilator successfully, you might die of heart failure after you are weaned off the ventilator because of the strain mechanical ventilation puts on the heart with this virus.
  • Should you get discharged from the hospital alive, you might wind up in a long term rehab facility after you are weaned off the ventilator.
  • Should you go back to your normal home life, you might have permanent long term health issues secondary to mechanical ventilation because of the damage it might do to your lungs and heart.
  • Should you avoid all those other outcomes, you might get off the ventilator with no long term sequelae and enjoy a full recovery, feeling so grateful for the ventilator—and the doctors—who saved you.

Nobody can predict for sure which outcome you will have if you do choose to get put on a mechanical ventilator, but younger people and those without comorbid chronic illnesses will likely fare the best. Ventilators are awesome if a young person is in a car crash and needs mechanical ventilation while other organ systems recover. If there is no infection in the lung, there is much less chance of permanent lung or heart damage. Such is not the case with Covid-19. As this Washington Post article discusses, if you don’t die from the virus itself, the hard part comes in the recovery. The physical recovery process doesn’t even address the mental and emotional sequelae—the PTSD and other mental health aftermaths of surviving the ICU.

It’s important to understand that doctors are trained to rescue people at all costs, without much concern for the quality of life during an acute illness or afterward. So if you do not make your wishes known about whether you would want to be put on a ventilator, doctors will defer to putting you on one if supplies and resources are available. If you do not want to be put on a ventilator, you need to make this very clear to your loved ones, ideally in the form of a legal advanced directive. You might even want to have a conversation about whether you want to be taken to a hospital at all, should you wind up in respiratory distress from Covid-19. Some people would prefer to risk either recovering on their own at home—without medical intervention—or dying at home, attended by loved ones wearing masks.

You might also want to be clear with your loved ones about the power of attorney. In other words, who would be the surrogate decision-maker, capable of implementing your end of life desires, should you be unconscious or otherwise unable to make your own decisions? If you don’t assign a power of attorney, family members may wind up fighting about what they think you might have wanted, adding the pain of a polarized family in dispute to the pain of your illness and possibly your death.

What To Consider In An Advanced Directive

As I said, there are many ways to die and many levels of life-saving intervention. If you decide you would want to be put on a ventilator if you get Covid-19, would you also want to be resuscitated with a defibrillator should you have a cardiac arrest while on the ventilator? Although some hospitals are not giving people that option, would you want that if your hospital is implementing cardiac resuscitation efforts? What if you say yes, and you’re on a ventilator, you survive to have paddles on your chest which restart your heart, only now you’re brain dead because your brain didn’t get enough oxygen during the cardiac arrest? What if you’re on the ventilator too late and brain damage already occurred, but your heart is still working? Do you want to stay on life support if there’s brain damage? What if there’s brain death?

If you’re brain dead but your heart is working, and they wean you off the ventilator—and you keep breathing, do you want IV fluids and a stomach tube to feed you? If food and water are withheld, you will then die, but maybe not for days or sometimes weeks. Would you want that?

Some people want the “full-court press,” medical lingo for “everything possible to save you at all costs.” Me, I don’t even want the ventilator. I probably won’t even enter a hospital right now, should I become very ill. But that’s just me, knowing what I know and choosing what it’s my right to choose.

It’s not just me. Many doctors I know have expressed that they would not even go to the hospital should they wind up in respiratory distress. Most of us also have pretty strict advance directives. Why? Because we know what happens in the long term to people who get resuscitated after they die one of the possible hospital deaths. We know what happens to people with acute respiratory distress syndromes, should they be lucky enough to get off the ventilator. Chronic infections. The bed sores. The nursing homes. The pharmacopeia of drugs needed to treat the sequelae of life-saving interventions. We know about brain death and other living hells.

If you’re not afraid to die—because you know death is no end—death may be a preferable alternative to living a half-life.

But this is where our personal preferences come in. Some people are content with living a chronically disabled life, feeling grateful to have been “saved.” Some, like my housemate who has chronic lung problems because she was put on a ventilator like a premature baby, are survivalists who will do anything to be the “last man standing.” She wants the full-court press. I don’t. Neither is right or wrong. But if you have a preference, now is the time to tell your loved ones and make your wishes clear. Even if you’re young and healthy, you never know when your loved ones might be faced with making these decisions for you. If you don’t express what you would want, you might wind up in living hell.

So . . . now is the time to find the courage to initiate these conversations—with yourself and your loved ones. What would you want? What do your loved ones want? Write down your wishes and at least sign them at home, if not in a legal document. During the next couple of weeks, someone may be extremely grateful that you did so.

Now . . . take a deep breath. Or listen to this coronavirus meditation I recorded for you here. In case this blog jacked up your nervous system, take a moment to calm yourself. We are all in this together, and somehow, together, we will get through this.

Conventional Medicine AND Sacred Medicine

I’m so grateful to my physician colleagues for doing everything in their power to save lives right now. We are rightfully treating them like heroes, and they are martyring themselves in the name of keeping others alive. I’m in no way diminishing such efforts, nor do I intend to suggest that ventilators aren’t helpful right now. One of my friends, who is both an ER doctor and an energy healer, is currently on the front lines. When I asked him to read what I wrote, he said, “I agree ventilators are just one small piece of the approach to this disease. But if all our ventilators are in use and a child comes in who can’t breathe, even with CPAP, and I have to intubate the little girl, who will keep bagging her to keep her alive? This happens. Last time I checked, they have only 1 vent at Mount Everest base camp. Families take turns bagging intubated members there. We don’t do that here. So our concern in the ER is who will have to be taken off the vent to put that little girl on the vent? Who do we have to euthanize so we can save a little girl? No one wants to be in that position.”

So yes, let’s get vents, so no doctor has to make Sophie’s Choice, and nobody needs to die needlessly. But let’s also notice our temptation to default to the medical orthodoxy—find the enemy (virus) and find the cure to dominate the enemy (ventilator, drug, vaccine), without even questioning why one human body might be vulnerable to dying from the virus, when another is not, or what conditions in the culture make us vulnerable to a viral pandemic and what we might do to reverse our choices as a collective species.

I’m just challenging what seems to be a growing idea—that the problem is a shortage of ventilators and ICU beds, and if only we get more ventilators and ICU beds, problem solved—end of the story. Yes, ventilators will help us. But that’s not enough. We need to question how we respond to a crisis, which usually requires finding an enemy and controlling the enemy. (For a brilliant philosophical synthesis about the war on death and the war on the coronavirus, read Charles Eisenstein’s The Coronation.

The reality is that we will need far more than ICU beds and ventilators to get through this crisis unscathed. All of the tools from the world’s cutting edge and ancient medicine bags are necessary, now more than ever.

In case you think conventional medicine is the only way to deal with Covid-19, rest assured that my team, along with Sounds True, is working diligently and as quickly as possible to put out STAT Sacred Medicine resources as a preview of what will one day be in my book Sacred Medicine: A Doctor’s Quest To Unravel The Mysteries of Miraculous Healing (Sounds True, Fall 2021.) I’ll be putting out a free ebook very soon, and I hope what I’ll share will help you feel empowered to both prevent infection and facilitate full recovery should you get sick. If you want to make sure you don’t miss the ebook, sign up for my newsletter here.

Now take another breath . . . and give yourself a hug for staying present during a difficult conversation. We can do hard things with great love.

With love,

Lissa Rankin,

 

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