Infuriating Code Status Changes

[JBMmom, MSN, NP]

One thing I've had a really hard time with ethically, especially in the past few months, is when an alert, oriented, informed, patient is admitted- usually a COVID patient- and makes themselves a DNR/DNI. Then, as they become hypoxic and hypercapnic, confusion can set in. We have had MULTIPLE times when family members step in and change that person's code status to full code, and they have been intubated. Most of them die, after an awful intubation course. But we've had a couple make it. One in particular is trached, pegged, and miserable. He constantly pulls things out, Foley, PEG tube, central line, and recently, he purposely threw himself over the bed rail onto the floor. He does not want any of what he's enduring and now he's stable and there's nothing we can do.

I've considered contacting our ethics committee members to see what their guidance is on this issue. It seems that defensive medicine will always win, a dead patient can't sue us, but the dead patient's family members can. So, we ignore the wishes of a patient and acquiesce to the family. In one particularly horrifying instance, we had a patient admitted who stated she had a living will. She had also named her daughter as the health care proxy. The daughter refused to bring in the living will and made her mother a full code until she basically rotted away on the vent. Her family members were furious because they knew it wasn't what the patient wanted. The ethics committee was called about that situation, but they don't meet often so it wasn't addressed before the poor woman lingered for almost a month on a vent before dying.

It's bad enough that all these people are dying, but to know that some of their suffering could have been avoided, per their OWN wishes, is just infuriating. 

[Susie2310]

I sympathize with the difficulties you are experiencing.

I think it can be difficult for a family member, even for a person who wants to make their very best effort to follow the patient's Advance Directive and conscientiously tries to do this, to follow exactly what is written down.  Sometimes, I think the wording leaves enough room (and even at times when the wording is very clear), that even a family member who wants to conscientiously carry out the patient's wishes and knows the patient well/is close to the patient, can struggle to decide how best the patient's expressed wishes should translate into decisions about the patient's care that the family member is now responsible for making.  What seems a simple, clearly expressed wish to a person without emotional ties to the patient, may be much less clear when it actually comes to carrying it out and making care decisions, to a family member who has strong emotional ties to the patient.  I don't think that these situations necessarily involve an intention on the part of the family member to disregard the patient's wishes (though of course, they can), but I think these situations can be very difficult emotionally for family members who have the responsibility to carry out the patient's wishes, and sometimes these are the results.  I think that if the family member is receptive, that a gentle conversation between the patient's physician and the family member, if the family member has a trusting relationship with the physician, in regard to the family member's decision making/carying out the patient's wishes, could possibly be helpful.  

[Guest219794]

The fact that we allow this abuse of patients is a disgrace.

There is no possible justification for it.  Hospitals allow it because the victim is entirely powerless, and cannot object, or sue.  

It is completely irrelevant whether the family member's intentions are benign or malicious, it is not their decision.  And, they are not at fault.  When the patient made these wishes known to the hospital, the hospital agreed to carry them out.   But, the hospital takes the easy way out at the expense of the patient.

I would love to see a prominent and expensive lawsuit in which the hospital is sued for abuse dictated by a third party.

[JBMmom, MSN, NP]

6 hours ago, Susie2310 said:

Sometimes, I think the wording leaves enough room (and even at times when the wording is very clear), that even a family member who wants to conscientiously carry out the patient's wishes and knows the patient well/is close to the patient, can struggle to decide how best the patient's expressed wishes should translate into decisions about the patient's care that the family member is now responsible for making.

I sympathize with what families are going through and I do understand that discussing code status when it seems to be a hypothetical situation is much easier than when faced with a family member struggling to breathe. HOWEVER, our intensivists have become very clear in their wording when discussing code status when patients are admitted to the critical care unit. For those that come in on high oxygen support, the doctors make sure the patients have a very clear understanding of how things could go and if they choose to be DNR/DNI I don't think anyone should be able to override that decision. 

[Susie2310]

5 hours ago, JBMmom said:

HOWEVER, our intensivists have become very clear in their wording when discussing code status when patients are admitted to the critical care unit. For those that come in on high oxygen support, the doctors make sure the patients have a very clear understanding of how things could go and if they choose to be DNR/DNI I don't think anyone should be able to override that decision. 

If a patient is able to make informed decisions about their care, and is sufficiently informed as to what the best and worst outcomes of their care could be, and makes the decision to be DNR/DNI of their own free will, I think that the patient has the right to expect that their wishes will be carried out.  Also, an Advance Directive, such as a DPOAHC, is a legal document.  It seems to me that in the case of a family member trying to over-ride a patient's DNR/DNI decision, that there should be a mechanism within the facility, such as the ethics committee that you mentioned, that will review the situation and recommend a course of action.  

[JKL33]

On 1/26/2022 at 5:32 AM, hherrn said:

The fact that we allow this abuse of patients is a disgrace.

There is no possible justification for it.  Hospitals allow it because the victim is entirely powerless, and cannot object, or sue. 

Yep, and they don't fill out surveys or get on fakebook and rant about how the hospital killed their family member.

This is a disgrace and there is no justification--you've summed it up.

I don't think it helps that more and more healthcare professionals now answer to lunatic administrators, including the docs. This shift to doing anything someone wants has progressively gotten worse, even to acquiescing to unreasonable, not scientifically supported care that is 99.99999% likely to truly be futile. Every doctor and nurse knows that the right thing to do is to utilize compassion and empathy and provide family support while standing firm/upholding the patient's stated/written wishes after they are unable to speak for themselves.

>10 years ago I was working on an inpatient floor when my DNR patient stopped breathing. A family member was at the bedside and screamed/summoned me to the room and I started to say "I'm sorry..." but before I could get my statement out she screamed across the bed, "Don't just stand there---DO SOMETHING!" I have no idea where my calm came from at that stage of my career, but I said something along the lines, "I'm so sorry [for your loss]....        ......her wishes were that she did not want any type of intervention...." I will never forget her reaction: Her shoulders and face fell and she said, "I know...." and then began sobbing, took her loved one's hand and started sort of saying her good-byes. 

I am sure this is so very gut-wrenching and heart-breaking, but we cannot ABUSE people and actually commit medical battery so that someone else doesn't have to face their loss right at that particular moment.

?

[JBMmom, MSN, NP]

18 hours ago, JKL33 said:

but we cannot ABUSE people and actually commit medical battery so that someone else doesn't have to face their loss right at that particular moment.

100%! None of us took these jobs to force people into accepting care they did not want.  It's happening more and more these days and I think we fail as a society in accepting that death is a natural part of life and working to prepare families to allow their loved one a peaceful death with dignity. To rob someone of that in their final hours, against their wishes, is absolutely the worst part of the job. And to watch the very few that survive, deal with what's left of their life, is almost as bad. I can only hope they find some comfort in the additional time that they will have with loved ones, even if their road to recovery is challenging. 

[Guest219794]

On 1/26/2022 at 9:46 PM, JKL33 said:

I am sure this is so very gut-wrenching and heart-breaking, but we cannot ABUSE people and actually commit medical battery so that someone else doesn't have to face their loss right at that particular moment.

Apparently, we can.

Until somebody wins an expensive lawsuit, and this abuse becomes expensive.  Right now, it is the easiest path.  I hope somebody makes it harder.

[Susie2310]

7 hours ago, JBMmom said:

It's happening more and more these days and I think we fail as a society in accepting that death is a natural part of life and working to prepare families to allow their loved one a peaceful death with dignity. 

I think there are a number of reasons for this.  

Today we have hi-tech life support equipment and medicine that can be very effective at keeping one alive.  The downside is that sometimes the price for being kept alive is a decreased/low quality of life.

Decades ago, if you had a stroke, there wasn't any of the sophisticated care of today.  People were bedridden/paralyzed, and relied on care from family members.  Health care wasn't the huge, money making business it is today.  The town doctor 80 years ago made house calls and made enough money to support himself, but he wasn't well off and didn't expect to make a lot of money practicing medicine.

As healthcare has evolved, so have people's expectations.  Years ago, my family members developed trusting relationships with the few physicians who served their area.  They felt their doctor did their best to help them, and although there weren't many treatments available, they were satisfied and grateful.  My grandmother trained as a nurse, expecting to spend her career providing hands-on bedside care to sick patients.  Today, healthcare has morphed into big business, with health care facility stocks traded on the stock exchanges, and some health care practitioners refer to themselves as businessmen.

I think that the general public have lost a lot of trust in healthcare.  And I think this shows in how they conduct themselves as consumers of health care.

[MunoRN, RN]

I've found views on this to be largely regional, or at least certain cultural views that are typically associated with particular regions.

In some parts of the country / in certain regional cultures, you just don't acknowledge your inventible death, you die on every possible form of aggressive treatment.  These parts of the country (mainly southeast US) are responsible for a concerningly large portion of our healthcare costs mainly due to futile end of life treatment, and the only product of this is avoidable torture.

My critical care career started in this environment, where families would simply wait for a family member who had chosen to be DNR. CCO, to be unable to make their decisions, then would reverse all of those decisions.

I then moved to an area with much different views, including the first, and only, time I saw a nurse literally grab a doctor by his ear and drag him off to tear him a new one.  The Physician, a new ER doc, asked a family member of a patient who for very good reasons had a POLST that stated "Comfort Measures Only" if they really "wanted the patient to die" because they wouldn't allow the physician to intubate the patient, the nurse training me physically dragged the physician away by his ear.  The physician called in the CMO and CNO assuming the nurse would be fired on the spot, the physician was fired and the CMO and CNO initiated criminal charges against the physician.  It was at that point that I realized views on the subject vary widely.  

Where I work now, part of the admission process to the Covid-ICU is that once a certain level of care is in place, there is no potential benefit to resuscitation protocols, so we're not offering those treatments, you are going to be DNR.  

We also clearly establish a patient's wishes given certain scenarios, and make a point of making sure their POA (either POA by default or legally designated) is aware of these choices.  This means when the patient is no longer able to express their views on particular levels of treatment we don't have to worry about how their POA will respond, they POA's only responsibility is to make sure the patient's wishes are followed, which is pretty straightforward at that point.

If the POA says they want to enact treatments are against the expressed wishes of the patient then they are automatically removed from being POA since they have violated the basic requirements of the POA.  

[JBMmom, MSN, NP]

7 hours ago, MunoRN said:

If the POA says they want to enact treatments are against the expressed wishes of the patient then they are automatically removed from being POA since they have violated the basic requirements of the POA.  

That sounds like what should happen! Interesting that you find a regional component, I'm in the northeast and I'm not sure where we fall as a whole, I've just seen frustrating situations personally.

Thank you all for the discussion. 

[PMFB-RN, RN]

Been there, doing that right now.

   This is why we have slow codes. Oh I know the ethics people always get their underpants in a bunch when I mention a slow code, but curiously they are never around when we could really use an ethics team, as described in the OP. But never a shortage of ethics Monday morning quarter backs to review and criticize. 

   Like the OP and many of you, I could tell true story after true story similar to those the OP has described. 

   As a full time rapid response team RN (our RRT is just one RN) and code blue leader, and documenter of all code blues that occur while I'm on shift I'm in a position to influence how we code people.

    In November I flat out refused to code a patient. I knew him well and he had been adamant he didn't want to be coded. He was a retired emergency physician and knew what he was talking about. Like described in the OP, his family changed his code status once he became hypoxic and confused. 

    When he went into arrest I arrived to his staff RN doing CPR. I announced I could not in good conscious take part in the code. Well I'm the code leader so the ward nurses stopped their efforts.

   I fully expected to be fired, but nobody ever mentioned it to me or wanted to talk about it. I get the feeling that my nursing management REALLY doesn't want to talk about it. 

   Luckily it was at night and no family members were present.