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Quick Tip for Families in Intensive Care: The Hospital Ethics Committee Recommends End-of-Life Care for My Mother in ICU but She Wants to Live

Hi, it’s Patrik Hutzel from intensivecarehotline.com with another quick tip and questions answered for families in intensive care.

So today, I want to elaborate on when there is conflict between families in intensive care and intensive care teams and what that often looks like and what you can do to negotiate with intensive care teams, especially in the absence of current advanced care plans and in the absence of when patients can’t speak for themselves.

So, this is actually from last year when we were working with a client who had his mother in ICU and the client’s mother was on end of life. But regardless, the client and his mother wanted to continue with life prolonging treatment.

I want to focus on today on the ethics committee report that was part of when we worked with the client. I want to elaborate on what happened there and how you can deal with ethics committees in particular in hospitals if you think the ethics committee is not very ethical and is not deciding what you think is ethical and it is not deciding in your loved one’s favors. So, I want to elaborate on that today.

Now, disclaimer, I am a critical care nurse by background, and I have worked in critical care for nearly 25 years in three different countries. I have also worked as a nurse unit manager for over 5 years in intensive care. I’ve been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com.

We have saved many lives with our consulting and advocacy. You can verify that on our testimonial section at intensivecarehotline.com or on our podcast section where we’ve interviewed some of our clients to verify the work that we have done for them.

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So, going into an email from our client there last year.

“Hi Patrik,

I called early in the morning, and I told the nurse that I needed to speak to the doctor and why my mom hasn’t got dialysis, and she should be getting dialysis today and what’s going on with the input and output and the fluid balance. It is just a whole number, but it’s not specifically saying if it’s stool or urine. As I’m writing this, she still hasn’t got dialysis, and the doctor is still not calling me back and the nurse says all the nurse can do is relay the message back to the doctor.

Have you seen anything in the medical records about my mother getting any dialysis today? Because now, the nurse said it’s up to the doctor. I said we haven’t consented to stop of treatments, especially dialysis and what is happening?”

So, when we work with clients, one-on-one, we often look at medical records directly and we keep our clients updated with any clinical news and interpret all the data that is going on in the medical records.

Now, I do want to read out the ethics report because there was obviously a dispute at the time whether his mom should be getting life prolonging treatment. Apparently, there was an advanced care plan from 2019, but his mom was in hospital in 2023. At that stage, she had clearly said in ICU even when she was a patient, when she was able to write, even while she was ventilated with the tracheostomy, that she wants all treatments to be done or treatments to be offered and life should be prolonged.

Now, let’s look at the Bioethics committee.

“There is a Bioethics Follow-up Note which states that your mom mentioned dated from the 31st of July 2019 that she didn’t want to have sustained aggressive medical interventions to keep her alive. She further indicated that she would not want to be intubated and would only want artificial nutrition for a trial period, and in the palliative care consult dated from the 19th of September 2019, in which she indicated that she would never want to be in a skilled nursing facility based on her experience with her husband.

This documentation is being used, along with the current clinician’s prognosis, to strengthen their ethical issues; to withdraw aggressive medical treatment to your mom since her condition is terminal and any intervention would not lead to any medically attainable goal. It is not expected that it would help her achieve her goals in terms of allowing her to leave the hospital, getting her home and being able to interact with her grandchildren.

Furthermore, it is stated in the report that that in the absence of the patient’s ability to do so, the medical team would look to any documented conversation or legal document, such as an advanced directive to provide guidance as a direct reflection of what she would have wanted.

Right now, as we acknowledge that between 2019 and between 2023 some time have passed and she may have changed her mind.

However, the interventions being advocated by the son are not in keeping with what the patient had expressed in 2019, which was not to be on a ventilator or on prolonged nutritional support. The son should base his decisions on what his mom would have wanted under the circumstances and not his own personal preferences regarding her care.

It is also recommended that the family should be offered the time and opportunity to seek outside consultation if they disagree with the decision to withdraw supportive treatment.”

Just pretty much what they’ve done by reaching out to us. But also, like I said, it became crystal clear and apparent that the client’s mother wanted to have all life supportive measures at the time.

The report continues, “The bioethical analysis and recommendations are written. Again, Ethics Committee reports are strictly advisory. Your decision should be considered since you are the power of attorney. Kindly see further details below.

Other reports of palliative care consult dated from the 19th of September 2019 and the wishes document by your mom in her advance care plan on the 31st of July 2019 are true based on your knowledge.”

So, the client then responded that yes, that his mother did document in 2019. However, his mom changed his mind while she was in ICU. I’ve seen it many times in ICU that patients and families change their mind.

So, the report continues.

“Ethical issue:

In this case, the surrogate, i.e., the son is asking for aggressive interventions and treatments such as continued ventilation, medications, and other requests that are not being offered or recommended by the treating team. Based on review, these interventions appear inconsistent with the patient’s previously expressed goals of care.

Background:

In summary, the patient is a 70-year-old female with a history of liver cirrhosis complicated by esophageal varices, hepatic encephalopathy, and hepatocellular carcinoma, COPD/chronic obstructive pulmonary disease, and Diabetes Mellitus who has been hospitalized since July 2022 after presenting to a regional medical center for altered mental status and being diagnosed with ICH (intracerebral hemorrhage) with herniation. The hospital course has been complicated by ARDS/acute respiratory distress syndrome requiring intubation with the tracheostomy on the 23rd of September 2022. The son declined the PEG tube placement because of concerns of gastric varices and patient continues to have a nasogastric tube for nutrition.

The patient was transferred to another hospital and has remained in the ICU with multi organ failure, unresponsive, tracheostomy ventilated and had been on dialysis since the 26th of July 23. She also has Stage 4 decubitus ulcer on her sacrum and is being followed for wound care.

Per her physician, it is unlikely that the patient would ever leave the hospital at this point due to being on dialysis and not having a PEG tube even if her condition were to stabilize. In discussion with the intensivists, the patient’s condition is considered terminal. Her code status is DNR (do not resuscitate). She is currently being kept alive with aggressive medical intervention such as mechanical ventilation, dialysis, and inotropes.

In prior conversations with the medical care team (physician, and social worker), the patient was clear that she didn’t want to have sustained aggressive medical interventions to keep her alive. These wishes were documented again in her advanced care plan in 2019, in which indicates she would not want to be intubated and would only want artificial nutrition for a trial period. The palliative care consult dated in 2019, which she indicated that she would never want to be in a skilled nursing facility based on her experience with her husband.”

Now, I can tell you that an advanced care plan should usually be reviewed every so often and even that he she changed her mind, the advanced care plan from 2019, which is 4 years ago, is no longer relevant. If it was the other way around, I do believe that intensive care teams would sign off on that.

So, what I mean by that is if an advanced care plan, for example, says “I want everything to be done all life sustaining treatment offered”, and then they change their mind to, “I don’t want it any longer.” Intensive care teams would go along with that.

So why are they not going along if a patient or a family changes their mind the other way around? You have to ask that question because, is it that the ICU needs the bed? Is it that the ICU no longer wants to spend any resources on the patient? They are relevant questions and need to be asked in a situation like that.

So, the report continues.

“In the family meeting on 1st of September 2023, attempts were made to discuss the inconsistency between the patient’s prior document wishes and her current plan of care, but it was difficult to do so because the son frequently interrupted the physicians throughout the meeting. Towards the end, the conversation was able to be redirected towards the patient’s current state and goals of care.

The plan eventually agreed upon with the family was that support would be withdrawn on 4th of September and the client or the patient would be allowed to die a natural death with medications to keep her comfortable at the end-of-life. The family had asked that the patient be given last rites since she is Catholic, and they were going to arrange for family members to come in and say their goodbyes.

Since that time, multiple attempts have been made to contact the individual family members to coordinate another family meeting. Both daughters are no longer responding to the calls. The son has been difficult to reach but when he has had conversations with the physicians, it has been to focus on only the medical intervention and not to discuss what is in keeping with the patient’s wishes.”

Well, like I said to you, the son has confirmed multiple times that when he talked to his mom that she wanted all life sustaining treatment to be considered and continued.

 

Suggested links:

• Quick Tip for Families in Intensive Care: Dad isn’t Improving on the Ventilator & ICU Says Tracheostomy Not Feasible Despite Advanced Care Plan!

• Being Told to Disconnect Life Support for My Dad Without My Consent! Quick Tip for Families in ICU!

• Quick Tip for Families in Intensive Care: Not Knowing If My Mom is Dying, I Don’t Want to Pull the Plug If She Has Chances of Surviving?

Now, the ethics report continues.

“Recommendations:

Number 1, it is ethically permissible to withdraw aggressive medical interventions and treatment in accordance with the patient’s previously documented wishes. The patient’s son by continuing to request aggressive measures, is not acting in good faith as the patient’s surrogate and respecting her autonomy to make her own decisions regarding her care at the end-of-life based on her advanced care plan from 2019.”

Once again, if it was the other way around, the intensive care team would go along with that. But now, all of a sudden, they want to say a document is valid from 4 years ago.

Next, “Based on conversations with the clinicians regarding the patient’s terminal condition (multi-organ failure), the current interventions are not able to provide a medically obtainable goal. There is no ethical requirement to provide treatments that lack a medical benefit.”

I say here, a lack of “perceived” medical benefit.

The report continues, “Comfort measures appear to be in line with what the patient would have wanted based on the documented conversations.

Next, family should be offered the time and opportunity to seek outside consultation if they disagree with the decision to withdraw supportive treatment.

Ethics Committee strictly advisory. These are recommendations only. Involved parties may have competing values and how to proceed is unclear. There are oftentimes when no option is ideal. Some options are ethically preferable while others are less so. The goal of this committee is to provide ethically viable options and to aid in prioritization of those options. All decision-making authority remains with the involved parties.

The report continues.

Ethical principles applicable to this case:

Number 1, respect for patient autonomy. Even when unable to make autonomous decisions in the present or future, people have the right to have their previous expressions of autonomy honored in the future, but also have the right to change their mind and withdraw those preferences. Examples of these rules include honoring a last will and testament for organ donation.

Number 2, beneficence refers to the moral duty to promote the course of action that the provider believes is in the best interest of the patient, promoting good while minimizing harm (non-maleficence).”

Now, I object here. It says here, “Beneficence refers to the moral duty to promote the course of action that the provider believes is in the best interest of the patient.” Well, what about what the patient believes is in the best interest of them? What about when the family believes what is in the best interest of their family member? The Ethics committee doesn’t talk about that.

Report continues.

“Ethical analysis:

There are two issues here, both are different, but they lead to the same conclusion in terms of the recommendations stated above.

The first issue is respect for the patient’s right or autonomy to make decisions regarding her own care. Under normal circumstances in which the patient is able to understand the medical information provided and can communicate her choices, the medical team would involve her in the discussions and ask her what she herself would want.

In the absence of the patient’s ability to do so, the medical team would look to any documented conversations or legal documents such as an advanced care directive or POLST (physician’s orders for life sustaining treatment) to provide guidance as a direct reflection of what she would have wanted. Since one can never anticipate every medical possibility, in those cases, the surrogate who is most knowledgeable about the patient’s wishes and is willing and able to participate in discussions with the care team would provide input as to what the patient would have wanted, using what is called substituted judgment.

The report continues.

The second issue is whether the interventions currently being provided are of benefit and would lead to medically obtainable goals of care. Based on conversations with the physicians, the patient’s organs have systematically shut down, her disease process is irreversible, and the prognosis is terminal.

Even with aggressive medical interventions, it is not expected that it would help her achieve her goals in terms of allowing her to leave the hospital, getting her home, and being able to interact with her grandchildren.

Both issues then lead to the same conclusion in terms of recommendations made above in that it would be ethically permissible to withdraw supportive treatment and interventions and transition the patient to comfort care, which would seem to align with her previously stated wishes.”

So here is what I have a problem with ethics committees in hospitals in general, they are employees of a hospital and the same people that might be part of the treating team, I’ve seen that in my extensive hospital work, might be part of the ethics committee.

So, one could argue straight away that there is a conflict of interest. If even ethics committee would be an outside team and would also talk to the family or a patient respectfully, which wasn’t always the case in this situation, it would have a different tone to it.

But my experience with ethics committees is they are employees of the hospital, and they are very biased. They will never take a neutral point of view or an objective point of view because at the end of the day, they’re getting paid by the hospital.

I think that is one of the most important factors here. They’re getting paid by the hospital and they won’t be going against their employer and the employer in this case is the hospital who wants the patient out.

Now, don’t misunderstand me. The patient was dying. It is more about this is something that, I criticized when I worked in ICU directly, that many patients and families want to go out with a fight, and they want to have a say with how they want to go out and that is often not respected.

In those situations, in particular, I can assure you that this lady changed her mind when she was in ICU, and she wanted to have all life sustaining measures thrown at her for lack of a better term.

Also, if this case would have gone to court, which it didn’t, very likely. Don’t get me wrong, I’m not a lawyer, I’m not an attorney, but the reality is this was in the state of California, in the U.S. When you look at the laws in California, it is up to a patient or then a surrogate decision maker to decide what’s going to happen with treatment. It is not up to intensive care team. So, if this would have gone to court, chances are that the hospital would have needed to provide the ongoing treatment regardless.

I am well aware that with all my time in ICU, there’s a lot of good things happening in ICU and there’s a lot of hard-working professionals in ICU. By the same token, we need to pay attention to the disputes in ICU and how we can resolve them amicably so that it’s a win-win situation.

This situation, it didn’t end up with a win-win situation. There were two parties that didn’t want to talk to each other in the end, which is never a good situation because at the end of the day, what about the patient who requires treatment in ICU even if it’s end of life care.

In any case, I hope that gives you more insight about what ethics committees do in particular and why I believe that as long as the ethics committee is not completely independent, you shouldn’t get them involved. I would object to that strongly, if was you.

My extensive experience with the ethics committee is not a good one. Like I said, they are hospital employees, they’re not independent, they’re not objective, they’re getting paid by the same people who are on the intensive care team.

So, I hope that makes sense.

If you are in a similar situation where you have disputes with hospitals, we are here to help here at intensivecarehotline.com. That’s also why we created a membership for families of critically ill patients in intensive care. You can become a member and get help by going to intensivecarehotline.com, by clicking on the membership link or by going to intensivecarehotline.com or go to intensivecaresupport.org directly. In the membership, you have access to me and my team, 24 hours a day, in the membership area and via email and we answer all questions intensive care related.

In the membership, you also have exclusive access to 21 e-books and 21 videos that I have personally written and recorded. All of that, the access to myself, my team and their e-books and the videos will help you to make informed decisions, have peace of mind, control, power, and influence.

I also do one-on-one consulting and advocacy over the phone, Skype, Zoom, WhatsApp, whichever meeting works best for you. I talk to you and your families directly. I talk to doctors and nurses directly. I ask all the questions to the doctors and nurses that you haven’t even considered asking but must be asked when you have a loved one, critically ill in intensive care. By talking to you and your families directly, by talking to doctors and nurses directly, I make sure you make informed decisions, have peace of mind, control, power, and influence, and making sure your loved one gets best care and treatment. I also represent you in family meetings with intensive care teams.

We also do medical record reviews in real time so that you can get a second opinion in real time. We also offer medical record reviews after intensive care if you have unanswered questions, if you need closure, or if you are suspecting medical negligence.

All of that, you get at intensivecarehotline.com. Call us on one of the numbers on the top of our website or send us an email to [email protected] with your questions.

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Thank you for your support and thank you so much for watching.

This is Patrik Hutzel from intensivecarehotline.com and I will talk to you in a few days.

Take care for now.