An excerpt from The Adventures of Dr. Anonymous.
During the COVID pandemic, I wished I could put out a public service announcement for physicians, patients, and families about end-of-life care. Palliative care is critical to hospitalist practice and one of the least discussed fields of medicine. It also is a major contributor to the burnout of physicians, nurses, and support staff. Watching a dying patient languish in the hospital is tough on the soul.
In my years of experience, many patients and family members have no idea what a code status or an advanced directive really is. Most commonly they say, “Of course I want to live!” when you ask them. Or the family members will say, “You have to do everything to keep them alive.” In reality, neither party is aware of what “doing it all” actually means.
Health literacy is one of my top priorities in medicine. I feel the most satisfaction when a patient understands why they are in the hospital, what may have caused it, and what the treatment plan is. And they can explain it to a family member or a friend. When I am done talking with a patient, I often ask if they can sum up what I’ve said and ask if they have any immediate questions. As a frequent admitter on night shift, this helps set the stage for the hospital stay.
My last question is usually, “If your heart were to stop, would you want us to restart it?” Followed by, “If you were to need a breathing machine (ventilator), would you want that?” These two questions broach a discussion that helps clarify goals. It’s great if family is there and can hear the response firsthand. I also encourage patients to put it in writing. Many times someone will tell me they would not want to be brought back but their kids will want everything done. Spouses and then children are typically the legal decision-makers if you are incapable of speaking for yourself.
What happens during a code? Technically, the heart has stopped or you have stopped breathing on your own and you need resuscitation. Resuscitation can come in several forms: medications, chest compressions, and a ventilator. Full cardiac arrest means you need all 3 of these things. If you’re having trouble breathing, you may just need a ventilator. For a heart arrhythmia, medication may be sufficient.
So, what does “doing everything” mean? A typical code scenario runs the advanced cardiac life support (ACLS) protocol over 20 minutes. This involves ongoing chest compressions (which break ribs if done correctly), high doses of medications, and inducing a sleepy state in order to place an endotracheal (breathing) tube that delivers oxygen to the lungs via a ventilator (a.k.a. life support).
After the code is over, the patient is on sedation drips for comfort if they survive. Daily spontaneous breathing trials are done with the goal of extubation, or liberation from the ventilator. If not, at about the 14-day mark, a feeding tube and a permanent tracheostomy (hole in the throat) are performed for long term nutrition and oxygen requirements.
“Am I going to be a vegetable?” “I wouldn’t want to come back if I’m brain dead and have no quality of life.” To these frequent assertions, I advise that there is absolutely no guarantee what your functional outcome will be after being on life support. People are usually NOT brain dead. They are weak, get infections, and may have neurologic impairment but are still alive.
What is your quality of life like if you survive the hospital? You are transferred to a long-term acute care facility (LTAC) where you wean off ventilator dependence and slowly learn how to speak, eat, and move again. Some people bounce back and forth between the hospital and LTAC many times. Some never have the tracheostomy or feeding tube removed.
For a young or healthy person, surviving a cardiac arrest is more positive. However, for the elderly or those with underlying health problems, the likelihood of ultimate survival is uncertain. Quality of life is typically not ideal. The problem partially lies in communication. Physicians are often afraid to burst the bubble of hope in family members. This happens for many reasons. Emotional reactions (anger, sadness, and fear) are common. Family members are hoping for a miracle, that their loved one will survive despite the dismal odds. There is often major guilt associated with making decisions or choosing to withdraw care. Unfortunately, there is a cloud of ambiguity that typically encompasses these discussions. As a physician, It’s important to say what you mean and allow for all questions to be answered.
What’s the alternative to doing everything? People usually recoil when I first say the word “palliative” or “hospice.” However, most people prioritize comfort at the end of their life. Many family members have thanked me for my honestly, delivered with compassion. Palliative medicine does NOT mean giving up. Hospice does NOT mean you are “put down.” The goal is to focus on comfort and a sense of control over their final weeks, days, and hours.
The best death scenarios are ones where family members are at bedside and comfort is prioritized. I call it the red carpet VIP treatment. They love when I say, “You can have all the ice cream, pain medication, and care that you need. You can request (or not) medications for pain and anxiety.”
The worst death scenarios involve prolonged and repetitive CPR, increasing drips to keep up the blood pressure, and tubes in every orifice. Sometimes family members insist on withholding sedation for their loved one, convinced they will wake up without it.
My plea: Talk to your loved ones. Honor their wishes. Put it in writing. Do it while they can still talk to you and make decisions for themselves. The likelihood of your wishes being carried out directly correlates with making sure they are fully understood by your legal next of kin.
Thanks for listening. Feel free to share widely with all your family, patients, and friends. It’s a topic everyone needs to talk more about.
The author is an anonymous physician and author of The Adventures of Dr. Anonymous.