It is a broken system - rant

I've taken care of a 90+ year old with advanced dementia who was full code. She didn't understand what was going on, but her family refused to make her DNR.

Now being in the ICU I see it even more. I've taken care of patient's whose bodies are actively trying to die, but we are doing everything we can to keep them alive.

It defies all logic. We do invasive procedures that add nothing to quality of life and only increase the pain/suffering of the patient. We do CPR and attempt resuscitation on patients who will never survive or if they do will have zero quality of life- will be unresponsive and intubated for the rest of their life.

I blame part of it on TV and movies- people don't really understand how violent and invasive codes can be. They don't understand how poor the outcomes are, the ribs that are broken, etc. On TV and movies they see people getting shocked out of asystole (my biggest pet peeve) then getting up and walking out of the hospital a couple days later like nothing even happened.

I've been saying for years in order to start receiving Medicare that an advanced care planning discussion should HAVE to take place and it should be mandated that it is re-evaluated at least every 5 years and with major life/health changes. Maybe families should also have to watch a video of a real code, get all the statistics, and see the real outcome.

If my family keeps me in the state as some of my patients then I will come back and haunt them.

I agree with you. People are so scared of death and equate to the worst thing ever that can happen. When in all reality having a 90 year old a full code on a vent and not able to effectively communicate, just hanging in death's limbo the worst thing that can happen.

I don't get why people refuse to think about having living will drawn up. I think it makes them have to think about their own mortality. But it truly needs to be done. Families can't let go. They don't want to be the ones to make that decision. Or, they think nana should live forever.

Doctors don't often want to have these conversations either. I feel like it's pulling teeth sometimes to get them to communicate with families on poor prognosis. So they linger. Costing thousands of dollars in pointless care.

We have to stop making death taboo to talk about.

Thanks for the post!

When I worked on burn, we'd call in the palliative team to discuss treatment management whenever we had an older patient with numerous co-morbidities who would probably survive the initial burn but for whom the numerous required surgeries, rehab, etc. would probably take a toll. The conversation would inevitably be something like "Okay, what's your goal?" and the patient would of course say "I want to get back home and live independently like I did before the accident." So we'll have this 80 year-old with bilateral full-thickness leg burns with poorly controlled dm, afib, htn, hld, cabgx3, copd, a bit of dementia, who wasn't really fully independent before the accident. It's like what the patient really wants is a time machine to take them back 40 years. But we can't do that...

I wish that this was discussed in high school health classes. We're always taught about how a youthful body functions, but students never learn about any of this end of life stuff, and they grow up to be sandwich generation people who feel that they have too much on their plates and are terrified of making the wrong decision. It is a lot to deal with, and we can't expect people to make rational, educated decisions about their loved ones when their emotions are at their peak. You're absolutely right that doctors should talk with patients and their families about this long before the need for the discussion arises.

You need social workers in the hospital to address these issues with families right then and there and explain what the various options are. (Because patients and families don't know.) Then make it a goal to get a POLST signed for every appropriate patient. It's human nature to avoid difficult decisions until they are right in your face.

I have quoted a reply I made on another thread to a similar post of yours.

"You have these concerns as a nurse, as many nurses, physicians, and other health care practitioners do. However, the person at the center of all of this, the person receiving the care, the person who is paying for the care along with their insurance company usually, is/are the patient and their family. Their perspective is often very different, and their wishes are very often not aligned with health care practitioners views of what is sensible, practical, economical, etc. They are invested differently. This is their body/mind and their life, and from the point of view of their family members, this is their loved one. Their priorities are theirs and shouldn't be chipped/bludgeoned away at by health care practitioners who are aiming to do some social good/conserve resources etc.

Patients have the right to be told by their physician what their medical problem/s are; what their treatment options are; the risks and benefits for each treatment option and the likely outcomes of the various treatment options, including the likely outcome if the patient chooses to receive no treatment. Then it is up to the patient and their family to decide what they want.

I think health care practitioners tend to forget that the patient/their family often only wants to be provided with sufficient information for them to make an informed decision, not to have health care practitioners make their decision for them. They have the right to make their own decisions about their health care, and whether or not we believe they are making good decisions is irrelevant as our beliefs are based on our perspectives/values, not theirs.

I really think our angst is misplaced. When we (health care practitioners) gnash our teeth about patients end of life choices/other health care choices, I believe we would be better off doing some introspection. Our perspectives/values are ours not our patients or their families."

I have quoted a reply I made on another thread to a similar post of yours.

"You have these concerns as a nurse, as many nurses, physicians, and other health care practitioners do. However, the person at the center of all of this, the person receiving the care, the person who is paying for the care along with their insurance company usually, is/are the patient and their family. Their perspective is often very different, and their wishes are very often not aligned with health care practitioners views of what is sensible, practical, economical, etc. They are invested differently. This is their body/mind and their life, and from the point of view of their family members, this is their loved one. Their priorities are theirs and shouldn't be chipped/bludgeoned away at by health care practitioners who are aiming to do some social good/conserve resources etc.

Patients have the right to be told by their physician what their medical problem/s are; what their treatment options are; the risks and benefits for each treatment option and the likely outcomes of the various treatment options, including the likely outcome if the patient chooses to receive no treatment. Then it is up to the patient and their family to decide what they want.

I think health care practitioners tend to forget that the patient/their family often only wants to be provided with sufficient information for them to make an informed decision, not to have health care practitioners make their decision for them. They have the right to make their own decisions about their health care, and whether or not we believe they are making good decisions is irrelevant as our beliefs are based on our perspectives/values, not theirs.

I really think our angst is misplaced. When we (health care practitioners) gnash our teeth about patients end of life choices/other health care choices, I believe we would be better off doing some introspection. Our perspectives/values are ours not our patients or their families."

I see where you're coming from and I think you have a very empathetic view. I think sometimes we do need to step outside of what we know, and try to view it from the patient's/loved ones' perspectives, keeping in mind that our goal is never to persuade people, but to inform them.

I also think that many of us get "angsty" about it because one of our roles (and arguably the biggest role we have) is to be patient advocates. I have watched an elderly man with dementia actively die while groaning, arching his back, and just staring at the ceiling with wide eyes--his daughter chose not to allow hospice to give him any morphine because she was worried it would hasten death. That man did eventually get morphine, and it's because I worked very hard to ensure that everyone was on the same page. I was a CNA at the time. I talked to the daughter (which did nothing at first), I called my company and asked for advice on what to do, and then I called the hospice nurses and explained what was happening. They were able to discuss this with the daughter. At first she was angry that I did all of this, but we both had a heart to heart and we both cried together. She knew I wanted what was best, and I knew she wanted what was best, and after addressing her fears, the team (the daughter, hospice nurses, and me) were able to collectively agree that comfort measures were in order.

Sometimes we do need to let things be, but when families clearly have a misunderstanding of the dying process, it's our job to step up as patient advocates.

In response to Susie:

I don't even know where to begin, but I find your comment about "healthcare practioners who are aiming to do some social good/conserve resources" extremely insulting. While I do think the financial aspect does need talked about and addressed- I forget the statistics but we spend a lot of money in the last months of life (most of it futilely)- that is not my main concern and frankly when taking care of patients isn't even remotely on my mind. My only concern is quality vs quantity and advocating for my patient. The family might not understand that by advocating for a change of code status I have the patient's best interest at heart- but I truly do.

Anyone who has ever been involved in a code knows how violent they are. I would in no way want my elderly relatives and friends to go through one, especially when they have co-morbidities that complicate them even more. Why in heavens am I going to break the ribs of a frail 90+ year old with advanced dementia who doesn't know anything? Who is aspirating on their own oral secretions? Or an end stage COPD patient who will end up intubated and will never wake up?

I've had an end-stage ALS patient who is already vent dependent, who can't eat, can't talk, can't move, etc. remain a full code. ALS is a horrible disease and I can't imagine going through it or having a loved one with it- but why on heavens earth are we going to prolong that persons suffering?!?! They have zero quality of life and no hope of it ever improving- it is only going to get worse. If they code they'd be in even more pain than before if medical staff have to do compressions, etc.

QUALITY VS QUANTITY!!!! That is what needs discussed!!

In response to Susie:

I don't even know where to begin, but I find your comment about "healthcare practioners who are aiming to do some social good/conserve resources" extremely insulting. While I do think the financial aspect does need talked about and addressed- I forget the statistics but we spend a lot of money in the last months of life (most of it futilely)- that is not my main concern and frankly when taking care of patients isn't even remotely on my mind. My only concern is quality vs quantity and advocating for my patient. The family might not understand that by advocating for a change of code status I have the patient's best interest at heart- but I truly do.

Anyone who has ever been involved in a code knows how violent they are. I would in no way want my elderly relatives and friends to go through one, especially when they have co-morbidities that complicate them even more. Why in heavens am I going to break the ribs of a frail 90+ year old with advanced dementia who doesn't know anything? Who is aspirating on their own oral secretions? Or an end stage COPD patient who will end up intubated and will never wake up?

I've had an end-stage ALS patient who is already vent dependent, who can't eat, can't talk, can't move, etc. remain a full code. ALS is a horrible disease and I can't imagine going through it or having a loved one with it- but why on heavens earth are we going to prolong that persons suffering?!?! They have zero quality of life and no hope of it ever improving- it is only going to get worse. If they code they'd be in even more pain than before if medical staff have to do compressions, etc.

QUALITY VS QUANTITY!!!! That is what needs discussed!!

And this is where I think a lot of primary care providers are falling down -- they are the ones who know the patient -- they are the ones who should be initiating this conversation. The conversation should take place well in advance of when the actualy decision needs to be made. It is not the place of the nurse in the ICU who just met the patient after the code on the floor broke half of his ribs. But it seems that the nurse is the first one to even consider that the conversation needs to take place.

Gunderson Lutheran hospital in LaCrosse, Wisconsin has a reputation of being one of the finest places in the country for end of life care. I can attest that they address the question of goals early and often. They ask about feeding tubes, antibiotics and code status. They also decided what options to offer the family based on realistic outcomes. A family who isn't presented with an option for interventions that aren't going to change anything won't feel guilty about turning them down. They can choose between realistic options that will make the patient more comfortable.

While I agree that we need to put our own perspectives aside since it's about the patient and their goals, I feel very strongly about being an advocate for mitigation of suffering. Very strongly.

I have seen strong, healthy men of 90+ lose all semblance of dignity in a very short period of time secondary to a sudden cardiac diagnosis. In the old days, these patients would pass in their sleep at home, etc. I have seen sharp, beautiful elderly ladies, passionate about their modesty and philosophical about their end of life, end up with every terrible intervention under the sun; even knowing them only a short time, I knew we were going against their wishes.

I have seen a wonderful former military and law enforcement officer go from walking independently in from the ED gurney to his patient room reduced to a pegged, trached, screaming and incontinent soul, crying out for days on end for us to kill him or for Jesus to save him. He had suffered a v-fib arrest on the way back to the floor following a normal stress test. The family could not agree on a plan of care. He lingered on our unit for weeks before going on comfort care/inpatient hospice. He died within hours of tube feeds being halted.

I'm sorry, but these are examples of doing harm. We need to advocate for our patient's dignity. I believe this. We cannot force our viewpoint, but we can educate, listen, try to assuage fears. Involve a multidisciplinary team to help make these tough decisions; transparency and realism can go a long way with an indecisive family.

I recently cared for a patient with late stage Alzheimer's, tube fed, bipap dependent, who was approved for open heart surgery. I was absolutely shocked. I have no idea what went in to the decision making process here -- I can only make judgments from the outside looking in. Our surgeons usually don't go in for something like that; we have a very solid team in the ethics department. Nonetheless, it happened.

I have suffered multiple losses in my life; some would say a statistically improbable amount of loss. I've been the person making the decision to withdraw care. But I agree with Nutella -- it's a multi-faceted problem; families are divided and fear "killing" their loved one and don't want to live with guilt. In the examples listed above, the patients DID make their wishes known during the admission process, both to staff and to their family. However, in the absence of the official documentation, a family divided can do a lot of damage.

I know that in at least 3 recent cases (including the police officer) the patient verbalized their wishes to at least one family member before things turned bad - often in a casual "in passing" but sincere style. The family were just unable to support their loved one's wishes one last time, for a myriad of reasons. I've also had a couple of cases where the patient just as clearly stated "don't ever give up on me" to their family members. In those cases, I have no problem parking my personal opinion about futile interventions at the door and doing what the patient wants, even if the consequences are terrible -- they made their wishes known.

Bottom line - The system *is* broken -- and the results are tragic more often than not. Quality over quantity to be sure; or, if you prefer, more elegantly stated:

"It is not length of life, but depth of life."

"Is immortality only an intellectual quality, or, shall I say, only an energy, there being no passive? He has it, and he alone, who gives life to all names, persons, things, where he comes. No religion, not the wildest mythology, dies for him; no art is lost. He vivifies what he touches. Future state is an illusion for the ever-present state. It is not length of life, but depth of life. It is not duration, but a taking of the soul out of time, as all high action of the mind does: when we are living in the sentiments we ask no questions about time."

Ralph Waldo Emerson, Immortality

And this is where I think a lot of primary care providers are falling down -- they are the ones who know the patient -- they are the ones who should be initiating this conversation. The conversation should take place well in advance of when the actualy decision needs to be made. It is not the place of the nurse in the ICU who just met the patient after the code on the floor broke half of his ribs. But it seems that the nurse is the first one to even consider that the conversation needs to take place.

Gunderson Lutheran hospital in LaCrosse, Wisconsin has a reputation of being one of the finest places in the country for end of life care. I can attest that they address the question of goals early and often. They ask about feeding tubes, antibiotics and code status. They also decided what options to offer the family based on realistic outcomes. A family who isn't presented with an option for interventions that aren't going to change anything won't feel guilty about turning them down. They can choose between realistic options that will make the patient more comfortable.

That hospital sounds wonderful. Would that all hospitals could approach end-of-life care similarly!

My husband's grandmother is in her late 80's, sharp as a tack, living independently and in relatively good health for her age. She has her hot pink DNR paperwork posted on her fridge. I am so grateful her provider had a conversation with her about her wishes! I wonder about my own grandparents, who are all in much worse health and, I suspect, still full codes.

While I agree that we need to put our own perspectives aside since it's about the patient and their goals, I feel very strongly about being an advocate for mitigation of suffering. Very strongly.

I have seen strong, healthy men of 90+ lose all semblance of dignity in a very short period of time secondary to a sudden cardiac diagnosis. In the old days, these patients would pass in their sleep at home, etc. I have seen sharp, beautiful elderly ladies, passionate about their modesty and philosophical about their end of life, end up with every terrible intervention under the sun; even knowing them only a short time, I knew we were going against their wishes.

I have seen a wonderful former military and law enforcement officer go from walking independently in from the ED gurney to his patient room reduced to a pegged, trached, screaming and incontinent soul, crying out for days on end for us to kill him or for Jesus to save him. He had suffered a v-fib arrest on the way back to the floor following a normal stress test. The family could not agree on a plan of care. He lingered on our unit for weeks before going on comfort care/inpatient hospice. He died within hours of tube feeds being halted.

I'm sorry, but these are examples of doing harm. We need to advocate for our patient's dignity. I believe this. We cannot force our viewpoint, but we can educate, listen, try to assuage fears. Involve a multidisciplinary team to help make these tough decisions; transparency and realism can go a long way with an indecisive family.

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Bottom line - The system *is* broken -- and the results are tragic more often than not. Quality over quantity to be sure; or, if you prefer, more elegantly stated:

"It is not length of life, but depth of life."

I had a similar experience as a student doing my ICU clinicals. I had a patient in her 80's who'd had advance directives filled out and one of her children was her healthcare POA. She did not want a trach or feeding tube, she wanted to be allowed to pass peacefully. Well, something happened that caused her to end up in the ICU with a very poor prognosis, and from what I understand, her entire family was on board with her wishes--but one. And because of that one, this lady ended up with the trach and feeding tube she didn't want, and that one family member was suing for healthcare POA. I was appalled.

The diploma program I attended (formerly a Catholic hospital school of nursing) taught us to provide excellent, compassionate care. It also taught us the value of a dignified death. I think that's something that is missing from our culture in the present day. People are so determined to hang onto their loved ones that they do everything they can to prolong life in a manner that I think most people wouldn't want, if they really thought about it. It really is a question of quantity over quality and it's unfortunate so many providers are afraid to broach the subject.