Please help me assess this

July 5, 2016 8:34 AM

Ok, YANMD. My mother had valve replacement and triple-bypass surgery last thursday afternoon...

The attending ICU doctor gently suggest to my sister (she lives with my mother. I am several hours away) that my sister should get power of attorney (no problem with that) and also to draft and sign a DNR order(!). My mother is 68, fairly overweight, has had a heart attack (about 5 years ago), stents, goes to dialysis weekly, has MRSA (had it before she went into hospital, according to ICU). After 5 days, she is still on a ventilator and sedated. I've run her numbers through a CABG mortality/morbidity calculator and come up with an unpleasant percentage, which concerns me, but that is as far as my medical knowledge goes.

What I'm trying to understand is: What signs to look for in the next 7 days or so as starting to recover or failing to recover, so I can prepare myself mentally for whichever outcome. How will we know if she's turned the corner either way?

posted by Chrischris to Health & Fitness (18 answers total)

I would ask your sister to ask the doctor exactly why he or she is suggesting such a thing. The two main possibilities are that she will have no quality of life at all even if she recovers, so that a resuscitation has little benefit even if it works, or that her chances of recovering are so low that any further drastic interventions would only be futile cruelty.

I'm all in favor of making thoughtful decisions about end-of-life care, but I worry that a fat old lady on dialysis may not exactly be getting the best advocacy from her doctor.
posted by praemunire at 8:58 AM on July 5, 2016 [3 favorites]

When my father was first diagnosed with congestive heart failure along with Stage IV cancer, his doctors suggested signing a DNR because if he were to have a heart attack, attempting to resuscitate would result in either severe injury, significantly reduced quality of life, or both. This was all explained to us at the time in great detail outlining potential outcomes. However, my dad was lucid enough at the time to weigh all the information and agree to sign the DNR. It sounds like this is not the case for your mother at the moment.

I second asking the doctor exactly why they are suggesting this course of action. A DNR is not necessarily a bad thing, but as it is a very big decision, it is a good idea to get all the pertinent information before making a decision.
posted by bedhead at 9:20 AM on July 5, 2016 [2 favorites]

My father just had quintuple bypass surgery in February. Five or six months on, he has fully recovered. He's in his mid-seventies. He was off of the ventilator within twenty-four hours. This is the way it is supposed to be. He was on his feet I think within 48 hours. He was walking (with a walker) to the lavatory from his bed within 72 hours.

With heart patients it's absolutely imperative to get off the ventilator as quickly as possible. The main worry is pneumonia. It has nothing to do with her being "a fat old lady on dialysis."

I am afraid that because of your mother's condition (dialysis, persistent infection), and the fact that she is still on a ventilator, that the prognosis is not good.

You should ask your doctor exactly what s/he meant by the comment, but you should also be realistic.

I'm really sorry to have to say this.
posted by My Dad at 9:25 AM on July 5, 2016 [11 favorites]

Not medical advice, but in terms of things to look for, their progress or lack thereof in getting your mother off the ventilator will be a key factor. Reasons for being unable to wean off the vent can be very complicated and are probably multifactorial in someone who is also already on dialysis. They may be lung specific (too much fluid in the lungs, or damage to the lungs from ARDS, or pneumonia) or she may have suffered some anoxic brain injury from the procedure itself. Sometimes there's fluid on the lungs but it can't be taken off with dialysis without dropping the patient's blood pressure dangerously low. Etc.
posted by The Elusive Architeuthis at 9:33 AM on July 5, 2016 [1 favorite]

Unfortunately, one of the things to prepare for is not ever getting a clear indicator. Recovery isn't linear. Things can, and often do, linger in the unknown for weeks or months. That's particularly true with an elderly patient with comorbidities. If you are holding out hope that there is a line to cross where you are "out of the woods," that may just never happen. Frustratingly, some signs improve while others get worse.

Mentally prepare that this may be a long, long trip through the unknown. It's hard, because we want to believe that someone is in control of scary situations, but this can be a very long, watchful wait.

(Certainly, ask for more clarity about the DNR recommendation. )
posted by 26.2 at 9:44 AM on July 5, 2016 [1 favorite]

Watch the ventilator numbers; she should need less pressure and oxygenation, not more. Here's an intro if you're not yet familiar with the terminology. Also look for success with sedation "holidays", where they dial back the drugs to see how she does with being more conscious. Also, at this point, if she still has tubes through her mouth, they have probably mentioned a tracheostomy; if they keep deciding she's not stable enough to do that, it's not a good sign.
posted by teremala at 9:53 AM on July 5, 2016 [2 favorites]

It has nothing to do with her being "a fat old lady on dialysis."

If you are under the impression that people in that class--and fat people generally, and fat women in particular--can reliably expect to receive the same standard of medical care as people outside it, you're very much mistaken.

A DNR may indeed be the right call here, but it's disturbing that the doctor is apparently not communicating in detail why it would be. It's a big step, and a huge responsibility for the sister.

OP, I'm wishing the best for your mom and your family.
posted by praemunire at 10:03 AM on July 5, 2016 [14 favorites]

The doctor should be willing to discuss the DNR order in more detail with you. In my father's case, which varied in some specifics but was somewhat similar, the advice from the Cardiac ICU folks was that a DNR during the initial recovery was a boon because if he suffered another cardiac arrest while in that state, CPR was quite unlikely to work and if it did restart his heart, they feared he would have even worse damage from which he could never recover to any reasonable quality of life. Once he recovered from the emergency surgery and was in rehab, everyone agreed that the DNR was no longer appropriate and we rescinded it.

My dad's ejection fraction was in the teens and he remained on the ventilator for 81 hours and all the statistics projected a very grim outcome. Nonetheless, 24 months later his EF is back around 50% and he is living a good and happy life again. When you put his data in the calculator now, he looks to have an almost normal life expectancy. So, you never know what you're going to get.

I'm not qualified to give you what to watch for in terms of removing the ventilator, but in my Dad's case they would take him off briefly using something called Automatic Tube Compensation (which is apparently better than CPAP, which they used to use) and test his O2 saturation. His numbers improved each time until they were high enough to justify extubation. You could ask them if they are testing and what her numbers are when they do. If her ventilator numbers aren't good enough to even test breathing independently, that is obviously not great. They did say that some people were much longer on the ventilator than others depending on the degree of sedation and other factors. My experience was that the ICU nurses were extremely knowledgeable and more than willing to explain things to me patiently, although I took a certain amount of good-natured teasing about being "Dr Google."
posted by Lame_username at 10:04 AM on July 5, 2016

ask the doctor exactly why he or she is suggesting such a thing

This this this.

A thing I have learned over the past decade of my older relatives declining is that doctors - deliberately or subconsciously - withhold information/educated opinions that may provoke a strong reaction, but then either assume the listener heard and understood their subtext, or are weighting the decision toward the one they believe is right. Most of them, if you dig in, will actually give you the specific whys, but it's on you to ask them to show their work.

It is time for someone to ask the doctor to non-gently explain. Also ask if the hospital has a social worker or nurse educator or cardiac care trainer or whatever who can come explain in lay terms what is happening and what the implications of various outcomes are - doctors are not necessarily good at this, and it's not the primary function of their job, and if you have access to someone who can help you, take the help.
posted by Lyn Never at 10:08 AM on July 5, 2016 [10 favorites]

Keep in mind that signing a DNR order does not mean that she can't get aggressive medical care. A DNR order is a recognition that CPR causes injuries with an exceedingly slim chance of success in this case. The big focus for your mom will be keeping her from developing an infection and getting her off the ventilator.
Who is taking care of her bills, finances etc..? Your sister may need a power of attorney to do that. Better to get it now just in case and not wait til your mom is unable to give consent and you have to go to court.
posted by SyraCarol at 10:13 AM on July 5, 2016 [4 favorites]

Medical power of attorney is different from the financial kind, you need both.
posted by TWinbrook8 at 11:02 AM on July 5, 2016 [1 favorite]

I'm really sorry you're going through this - my father passed away recently and Lyn Never is exactly right. My dad was in his 80s, his health had been declining sharply for a couple of years, he had a couple of chronic conditions that were basically untreatable, and still they would dance all around stuff - "we can try this; we can try that..."

Medical personnel tend to talk all around things. It helps a little to say things to them like "I realize she's very sick" and "we're prepared for the worst," and even then they tend to make recommendations without telling you why they're making them. There are several reasons I think they tend to be this way - no point in going all through them. I find it's best to just kind of keep asking the questions different ways and hope that eventually a pattern sort of emerges. Sometimes nurses are a bit more able to speak to these matters than doctors. For one thing they actually see the patient more.

A couple of data points:

- a DNR doesn't mean that they are giving up, necessarily, or that they won't continue to try to improve her condition. All it really means is they won't try to revive her if she does "code." This is still a big decision, but it's not like you're stopping care. My dad had a DNR in place for the last two years of his life, and received all kinds of treatments which were helpful at the time and gave him a few more good months.

- you might benefit from talking to a patient care specialist or a hospitalist at the hospital. Sometimes the case doctors are not the greatest at explaining things, or even at seeing the patient's health holistically.

You asked what to look for and how to tell what direction things are going, and how to prepare yourself. Not sure if it provides any peace, but it's always really hard to tell. You're not failing in due diligence by not understanding how it's going. People get better from extremely unlikely health conditions, and decline from really mundane things. We feel we can manage health, predict it - as a Christian my own terminology for it is the cliche "it's in God's hands," - however you want to think about it, matters concerning the future are always too soon to tell.
posted by randomkeystrike at 1:42 PM on July 5, 2016 [1 favorite]

Unless I'm missing something here, your sister cannot get power of attorney unless your mother consents, and your mother would have to have the capacity to give that consent. If your mother has the capacity to consent to a power of attorney, she has the capacity to make a decision about the DNR order. If that's the case, it is not ultimately up to you or your sister whether a DNR order is entered.
posted by merejane at 6:27 PM on July 5, 2016

End of life decision making varies by state. In my state, NY, if someone incapacitated before appointing a health care proxy there is a hierarchical list. Spouse, oldest child of legal age, parents, oldest sibling Etc. (Or something like that, I can't remember the exact list). In other states, a court must appoint a guardian. Anyway, one does not need to be power of attorney to sign a "do not resuscitate" order, just health care proxy.
posted by brevator at 6:57 PM on July 5, 2016 [1 favorite]

There are many good suggestions here. One that I have that I thought might be helpful is to try to understand how many organ systems are failing. Your mom went into the surgery with kidney failure, and possibly heart failure. She isn't able to be extubated now - why is that? Did she have underlying lung conditions like COPD or asthma (which could greatly complicate the ease of recovering lung function after major surgery)? Or is it something new going on, like a pneumonia?

One final possibility is that her lungs are actually doing fine, but that it appears she is not breathing because she doesn't have the mental status to do so. Is there any indication she could have had a stroke during the procedure? Etc.

How is her circulation? Is she maintaining her blood pressure with her own physiology, or is she requiring "pressor" medications to keep her blood pressure up? Requiring pressors for any reason (often septic shock or cardiogenic shock) is a sign of critical illness.

These are some of the main systems that one's body needs to stay alive. Many of these systems can be supported mechanically or medically if they are failing, but the more failing systems you have, the less likely it is that one would have any reasonable chance of survival in the event of a cardiac arrest.

Most people don't realize how abysmal the odds are of good functional survival (not just getting a pulse back, but actually living to discharge from the hospital without serious brain injury from lack of oxygen during the code) after cardiac arrest. On TV the majority of patients who have cardiac arrests survive. Recent studies suggest odds of survival to a hospital discharge after in-hospital cardiac arrest are about 25%. This is part of the reason why most doctors are very enthusiastic about DNR/DNI or comfort care orders for themselves or their loved ones. We don't want to chance high odds of either death involving many broken ribs and a full frontal assault on our bodies instead of a death with dignity and peace, or life with a pulse but with a serious brain injury. If people actually realized that only 10-20% of those who have cardiac arrest have meaningful survival afterwards - and that's including "all comers", not the subgroup that had multiple organ system failure before it happened - I suspect a lot more people would consider DNRs.

I personally advocate for every adult human being to have a healthcare proxy legally designated who knows their wishes for end of life care, but unfortunately, most people try to wait until the proverbial last minute (or just prefer to pretend the possibility of dying doesn't exist), and that strategy results in a lot of sad outcomes.

I don't want to be too focused on doom and gloom here because all this only comes into play IF there is a cardiac arrest, which already means that the direst possible situation has arisen. With the limited information provided, it is impossible to say anything about the likelihood of that happening, but these are some rumination on things to consider *in the worst case scenario* - and hopefully many years before the worst case scenario.
posted by treehorn+bunny at 7:20 PM on July 5, 2016 [5 favorites]

Considering the comment above about how doctors often have a subtext that they think people are getting, I wanted to be more clear about one of the comments above:

The reason I ask about what the causes of the organ failure are is in order to determine whether it is reasonable to expect recovery over time (i.e. from pneumonia, because it is treatable) versus problems that are unlikely to change over time.
posted by treehorn+bunny at 7:25 PM on July 5, 2016 [1 favorite]

CPR is a violent procedure. The doctors are braking bones to be attempting to restart the heart, and even when people do survive, it is a long and painful recovery.

One of the complications of kidney failure is it will slow any healing down, and an her immune system is trying fight off an awful infection, plus the recent trauma of heart surgery it doesn't look good at all.


It's a hard place to be. Getting off (weaning) from the vent is the number one priority. Having a vent puts her body at more risk for infection such as pneumonia. It also is very very expensive to maintain long term, and would most likely require extensive nursing home care if she does not come off. In addition brain activity after major surgery is super iimportant, how aware is she off of sedation (will she follow simple commands, does she make eye contact?).

Things to look for: in terms of infection being without a fever.
Vent: look for efforts to wean (are they trying? Are they attempting spontaneous breathing tests, what happens if sedation is lifted? Does she follow commands?)

Fluid overload- this will be due to the antibiotics and dialysis plus her heart failure... are they taking fluid off?

Blood pressure stability, and O2 Sats are important things to look at.

Take gentle care of you.
posted by AlexiaSky at 8:49 PM on July 5, 2016

Just to clarify my post above, I wasn't saying that you need power of attorney to consent to a DNR order for someone else. I was just saying that if the OP's sister is getting a power of attorney (for, say, financial purposes), she would need her mother's consent. And if her mother has the capacity to grant a power of attorney, she likely has the capacity to consent to a DNR order. In that situation, when the patient has capacity, you don't get to the list of surrogates.
posted by merejane at 12:17 PM on July 6, 2016