As hospitals brace for a wave of patients, and an overwhelming number of patients to end up in the ICU on ventilators, I wanted to take a moment to share my thoughts on limitations of care. This is especially relevant if you have a loved one that has severe chronic illnesses, requires help to get through their days (with showering, meal preparation, going to the restroom, referred to as Activities of Daily Living), or is physically dependent.
One of the most heartbreaking things in my job is to have a patient admitted to the ICU on a ventilator, perhaps with CPR prior to their coming, and when I call the family they say “Oh, they were a DNR, we didn’t want that”. It happens more than you might imagine. Or, I have family members say “they would never want to be on life support” and I look at the ventilator and dialysis machine and wonder where there is such a disconnect.
This is never a good situation, and family and the care team have to work together to get on the same page and provide appropiate care going forward. But, at this time when there may be no extra beds, we want to make sure that our care for every patient is in line with their wishes, appropriate for their medical condition, and communicated effectively.
When we admit a patient to the ICU, several things must happen mentally at one. First, my team has to stabilize whatever is going wrong—low blood pressure, airway, oxygen saturations. While we’re doing that, I must figure out what is causing this problem and start empiric treatments. It requires a rapid series of diagnostics to get answers and make sure we are on the right track with appropriate care. Next, it’s my job to figure out how far from normal and from their baseline their current function is, and is it reversible. Finally, I look at pitfalls. If their heart or lungs stop (cardiac arrest) are they appropriate for CPR?
CPR, or cardiopulmonary resuscitation, is pushing on the ribcage (100 times a minute) to squeeze down on the heart and mimick the heart pump action while the heart isn’t beating. It is a wonderful, life-saving therapy for younger patients with an isolated heart problem. You can replace the pump of the heart, shock the heart back into rhythm, and then treat the underlying cause. Patients can go on to live and function a relatively normal life.
I always ask families to think about: will CPR fix what is making them sick? There are so many instances now where adding chest compressions adds little to the outcome, but may be painful and uncomfortable. Underlying severe infections, multi-organ failure, advanced cancer are situations in which this aggressive form of care may add very little to what is already being done.
In the ICU, the risk of clinical decline to the point of death is higher than average, and we address this issue with every patient. Thousands of time I’ve asked myself these questions:
1. If we do CPR, will the ribs break? Breaking ribs can puncture lungs and be extremely painful.
2. Is there severe lung disease such that bruising the lungs from CPR will only make it worse?
3. Does the patient have severe heart dysfunction which will not correct with treatment if they do survive an arrest?
4. What is the baseline functional status? We expect patients will not return to their baseline, so what can be expected if they survive the CPR?
5. Can the patient understand what we are doing? Severe cognitive issues, such as dementia, complicate care. Being intubated and having the necessary cares is challenging if you understand the reasoning behind it, but without that level of comprehension, are we doing more harm than good?
6. What has been this patient’s involvement with healthcare? When I see patients who choose to forgo treatments for conditions at the mild level, it makes me wonder if they would approve of more aggressive cares. (Ie, the woman who ignored a fungating breast tumor, then develops a head bleed from metastatic disease.)
After I review these questions in my mind, I speak with family. It’s hard to understand the patient’s function outside of the hospital when we meet under critical circumstances, and discussion the family is critical.
I used to work in a trauma center that had a high level of geriatric patients admitted with bad falls, hip fractures and head bleeds. My discussions with family would start with “they were completely fine until this.” But, upon further questioning, there was a slow decline over months and they weren’t ‘fine’, but very compensated and not doing well. Sometimes the family needs some time to realize what has been happening, because slow changes aren’t always as recognizable until there is a crisis.
Recently, I admitted a gentleman on oxygen at home. I had to get more context for his level of function. It look several discussion with the family to elicit that he couldn’t get out of bed because he would get too short of breath and used a bedside commode because he couldn’t walk to the bathroom. That helps me prognostically as we made difficult decisions for him regarding a ventilator.
Age is one factor in care, but certainly not the only one. There is ‘chronological’ age and ‘physiological’ age. We do have to be realistic that the average age of patients in the US is around 78 years old. So, when I had an otherwise healthy 96 year old with a brain bleed, I asked the family to critically look at what her life would be like on the other side of her care, should she survive.
I tend to be blunt, realistic and talk about these things with families. I ask them to consider things that wouldn’t normally be on their radar: would your loved one be ok living in a nursing home? Would they want to stop eating and have food put thru a feeding tube instead? Would they mind not being able to walk and get around independently?
In the face of the pandemic and possible overwhelm of our healthcare system, I ask that you do three things if you are responsible for caring for someone who might fall into these categories:
1. If you KNOW someone prefers not to have CPR or “be on machines” (ie, ventilator) or would not want to be intubated, make sure that it’s written down. Most facilities have someone who can help with this process. Some states require it both in the hospital and outside of the hospital.
2. If you are responsible for the care of someone who may fall into the above categories, have a frank discussion with them about what they would want if they would become critically ill and not be able to make their own decisions. Your job is to represent their wishes, not make decisions for them. I much prefer having these conversations in a calm setting when someone is well than at 3am with an impending arrest.
3. Think these things through and how they would apply to your loved one, should they be admitted. It will come up and someone will ask, whether they expect your loved one to reach that point or not.
Every patient admitted to the hospital should have the opportunity to make decisions regarding their care, and limitations of that care.
Please note, this is not specific to the current COVID outbreak and has no bearing on the natural course or severity of disease we are seeing. It’s literally the process I work thru with every patient admitted. It’s just a good time to be prepared, should this respiratory illness affect your loved one.
What do you do if you’re asked, “Do you want us to do everything?” This is my absolute pet peeve and it happens every day. (No, please save the good stuff for someone else and give my family the crappy care, said no one, ever.) I have to do a lot of educating that we always ‘do everything’ we can to help patients, it’s just sometimes our goals change. In some cases, we accept the current discomforts of care to try and help a patient survive an acute illness. In other cases, a more gentle approach and focusing on keeping someone comfortable and accepting a shorter life is much more appropriate.
This just to get you thinking and talking if it applies to you. I hope you have trusted and supportive people to help you should you be in the position of making difficult decisions, during this situation, or at any time.