It is a broken system - rant

Semper_Gumby · Jun 10, 2017

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.

KatieMI, BSN, MSN, RN · Jun 11, 2017

Four principles of medical ethics are wonderful things when they are used in correct way. Pushing patient with very limited life expectancy toward aggressive chemo with known severe side effects and not expalining that max possible effect of shrinking mets 20% doesn't mean 20% chance to be cured is not "beneficience". Keeping someone in persistent vegetative state on vent for 10 years through all pneumonias and such is not "nonmaleficience". And allowing people who cannot successfully manage their own lives to make that level of medical decisions independently and accepting those decisions without further questioning has nothing to do with either "autonomy" or "justice".

I will remember to the end of my life 90++ y/o demented, legally blind, b/l AKA already and hooked to dialysis three times a week poor soul who was pretty much used as a guiney pig to try out a new state-of-the-art "closed chest" surgical system. Her family wanted "everything to be done to fix her right up" and the surgeon wanted to try his new toy. After the system failed and patient was opened up anyway for AVR and several bypasses, she was promptly left to die in ICU in the role of "teaching tool" for residents. She was too unstable for effective analgesia most of the time, and it took her a full month to finally depart in Heaven.

chacha82, ADN, BSN · Jun 11, 2017

"Consider the Conversation" is a really good documentary about this subject.

nutella, MSN, RN · Jun 11, 2017

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...

So sad - discussions can be better.

nutella, MSN, RN · Jun 11, 2017

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.

The sad thing is that we have everything in place. I work for a palliative care team in the hospital. There is no lack of social worker. We are actually ahead of many places because we have trigger systems in place that trigger information and identifies patients in the hospital who are appropriate to be seen by palliative care. The nurses, case managers and some hospital physicians are also up to the task and address "options and such."

One problem is that the acute care hospital is the worst place to have the initial conversation. People apparently have already a hard time to make decisions - when they are faced with a crisis they get anxious and that makes the whole process harder.

Another problem is that many people do not qualify for medicaid and do not want to downspend. They know and are informed about their options. But if they chose hospice and have to go to a facility, they have to pay room and board - which families often do not want to do.

The problem is in the community but everybody makes it our problem in the hospital because we are stuck with discharge plans and ultimately, people can bounce back to the ER.

heron, ASN, RN · Jun 11, 2017

Unfortunately, any attempt to change this situation immediately becomes a political football, AEB the mythical "death panels" of the ACA. I can just see the endless religious freedom arguments now.

So ... do readers think we should move more toward the British practice of DNR being decided by the attending physician?

heron, ASN, RN · Jun 11, 2017

oops:bag: Double post.

nutella, MSN, RN · Jun 11, 2017

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 appreciate your critical comment re self-reflection and introspection.

In general, I agree with the notion that healthcare decisions are not ours - they are what the patient and family decide.

But there are several things to consider IMO.

One is that when a physician can clearly come to the conclusion that a treatment will harm more than it benefits or the risks outweight the benefits - they have to take a clear position. After all, there are several ethical principles that are to be upheld. It is our job to make sure that families and patients understand the choices,but some choices should not even exist.

There are surgeon, nephrologist, interventional cardiologist who will correctly identify that kind of situation and not offer a tx based on it. They will say "I am sorry ms x - you are not a candidate for surgery based on xxxx and your best choice at this time is to choose a careplan that focuses on comfort." For oncologists it is obviously different - we all know that. I had family members yell around because they were pinning their "hope" (whatever that means in that context) on some "trial". The oncologist very well knows if the patient is not a candidate because the illness is too progressed but families do not accept it that way. They go into the city and want to be told there.

And - what is often forgotten - it is not ok to give patients/families several choices with no clear recommendation! That is the most common mistake in those conversations. Patient-centered care was never meant the way it is now carried out. For example, an oncologist may say something like "based on what I know that is important to you, my recommendation is not to continue palliative chemotherapy because it has made you weak, had many side effects and landed you in the hospital. I know that you have said it is important to spend time with your family at home - I recommend best suportive care without further chemotherapy and we should also talk about care that focuses on comfort."

Those are 2 options.

There are physicians who hide behind "patient autonomy" which can harm the patient and family when we leave them with all those options they do not understand plus ask them to make a decision that they are not ready to make or when they are overwhelmed.

Some while ago, I was in the ICU. The family wanted "everything " to be done for a bedridden patient with progressed dementia who was unable to swallow and had a sepsis. The patient was 95+ y old and had not been out of bed in ~year. Short of a breathing tube, she was on pressors, iv fluid that gave her CHF, and many other problems. The patient was a full code and the family stayed 24/7. The physician was very stressed out. But when I pointed out that in cases of medical futility there is no need to provide medical tx that are futile - which needs to be verified per two physicians - I was told that while this is true, nobody wants to get sued by an angry family because even though you may not be at fault it will follow your license.

Crazy, right? It was not until the team was ready to perform chest compressions and had the board under the patient that the family said to stop. The patient spend several weeks in the ICU and everybody knew the outcome.

I totally agree with you that care needs to be aligned with values, goals, preferences - having conversations for that is one of the main work that I do. But - when decisions are obviously also made because $$$ is king you wonder how well that really works.

I get that they do not want to burn through mom's savings - which happens when they have to pay 12 000 per month for longterm care. But I cannot change the system that is broken either. I have seen enough family members shuttle their loved one back and forth to "rehab" to get "stronger" although they are not rehabable and are often D/C after few days just because they can not stay by themselves anymore.

Rehabs should not even accept patient who do not have skilled needs or who cannot rehab.

In the bigger context of society, it is everybody's problem. Because guess what - if you pay taxes, you also pay for medicaid and medicare. We pay more money for healthcare than other developed countries and get worse quality of healthcare. Perhaps not apporaching healthcare this way actually leads to better outcome?

I have a lot of compassion and understanding for the fact that decision-making is a process that takes time - which is why it should not start 5 minutes before a person dies so to speak. But I do not support the idea that we just put out "options" and let the "customer" choose without reflection on their choice.

That is poor practice.

nutella, MSN, RN · Jun 11, 2017

Unfortunately, any attempt to change this situation immediately becomes a political football, AEB the mythical "death panels" of the ACA. I can just see the endless religious freedom arguments now.
So ... do readers think we should move more toward the British practice of DNR being decided by the attending physician?

Personally, I favor looking at DNR/DNI as what it is - a medical treatment, which is ordered by a physician. If it is a medical treatment, a physician should make the decision based on a medical understanding that resuscitating a person would cause more harm and not change the outcome. The question then always becomes how and who would make those guidelines. And where is the "cut-off".

I believe that based on what I am seeing day to day, that we do not do people a favor by pushing decisions on them when they are unable to make those or when it invokes guilt.

Everybody is afraid of getting sued nowadays, which makes it less likely that a physician will make a clear recommendation or argue with a family who has "unrealistic expectations."

I have seen cases when family was unable to make decisions or the patient did not want to go through everything known to mankind but did not want to be seen as "giving up" etc.

At times, a physician will ask if they want to just follow their recommendations that is based on the fact that he/she has studied medicine and understands all implications. Families are often relieved as it takes that burden off. I have never seen a physician recommend DNR/DNI in an unethical way or when it was not appropriate.

People are so confused - they often think that DNR/DNI equals "do not treat."

So the short answer is "yes" to your question but it should be explained to patients/families properly.

The other day, a 90 + patient said to me "you guys are crazy - they doctor asked me if I wanted to be "brought back if I die" with all kind of things. No - I do not want to be brought back from the dead. I thought you guys had common sense, I am 90 +y old"

TriciaJ, RN · Jun 11, 2017

- I was told that while this is true, nobody wants to get sued by an angry family because even though you may not be at fault it will follow your license.

And this is why no "system" will ever succeed without tort reform. Physicians are not at liberty to do the right thing when they have to constantly protect their license and their livelihood. I also agree that families should not be offered "choices" that aren't really choices.

We all know how hard it is to have a pet put down when it is time. It's understandable that families don't want to make the decision to "pull the plug". That's why we need healthcare providers to be able to have the hard conversations, encourage realistic expectations and guide the decision-making process with their expertise.

In this day and age of "customer service" we present buffet-style "options" that leave the family ill-equipped to do the right things.

Kooky Korky, BSN, RN · Jun 12, 2017

What is POLST? HLD?

Sometimes a facility will not honor a DNR written decision, an Advance Directive. I had surgery scheduled at a particular outpatient center, presented my DNR AD to them, was told they do not honor these and I would have to be resuscitated if I went through with the operation there. While I kind of understand their stance, I was aggravated that I'd be forced and that no one had informed me prior to the day of surgery.

Other than the suggestion to have a Social Worker deal with the problem and to have the topic presented to high schoolers, what suggestions do we have about this? I guess we nurses can handle it with our family members, sometimes anyway.

Read Tom Brokaw's book about his experience with multiple myeloma. So often as I read it, I felt that he simply never really realized that his life, like everyone's life, would ever end. That sentiment might be more common than we realize.

My grandfather lived to almost 100. He was in diapers, kept falling, suffered all of the indignities of being helpless in a facility that was terribly understaffed or filled with lazy workers. He had once been young and vital, was now old and totally dependent, but he did not go gently.

The gerontologist finally suggested to his kids that they consider not treating his next UTI and they decided to take that route. No one wanted him to break a hip or continue living what seemed a pointless life. He went quickly when the next infection was left untreated. It sounds and was barbaric. We need more right-to-die states. They shoot horses, don't they? But we make humans live and suffer. Help us, dear God.

Anonymous865 · Jun 13, 2017

What is POLST? HLD?
Sometimes a facility will not honor a DNR written decision, an Advance Directive. I had surgery scheduled at a particular outpatient center, presented my DNR AD to them, was told they do not honor these and I would have to be resuscitated if I went through with the operation there. While I kind of understand their stance, I was aggravated that I'd be forced and that no one had informed me prior to the day of surgery.
Other than the suggestion to have a Social Worker deal with the problem and to have the topic presented to high schoolers, what suggestions do we have about this? I guess we nurses can handle it with our family members, sometimes anyway.
Read Tom Brokaw's book about his experience with multiple myeloma. So often as I read it, I felt that he simply never really realized that his life, like everyone's life, would ever end. That sentiment might be more common than we realize.
My grandfather lived to almost 100. He was in diapers, kept falling, suffered all of the indignities of being helpless in a facility that was terribly understaffed or filled with lazy workers. He had once been young and vital, was now old and totally dependent, but he did not go gently.
The gerontologist finally suggested to his kids that they consider not treating his next UTI and they decided to take that route. No one wanted him to break a hip or continue living what seemed a pointless life. He went quickly when the next infection was left untreated. It sounds and was barbaric. We need more right-to-die states. They shoot horses, don't they? But we make humans live and suffer. Help us, dear God.

I thought it was standard practice to not honor DNR during surgery.

Where I am all the hospitals state that they will always attempt resuscitation during surgery, PACU whether or not a person has an advance directive. The assumption is if an arrest occurs during surgery, it is a direct result of the surgery and is treatable. They also assume that the fact someone chose surgery means they are choosing treatment.