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

Today’s tip is about, “What to expect after the ventilator is removed for end-of-life care in intensive care?” So, before I go into today’s topic, I also want to highlight that if you are a family member in intensive care and you are in a situation like that where you are anticipating that the ICU team wants to remove the ventilator for end-of-life care, that you don’t have to agree with that. I want to educate you that you have the right to stop them from doing that.

It is not a unilateral decision-making process, i.e., it is not something that the intensive care team can just decide for themselves whether they are going to withdraw life support and a ventilator for your critically ill loved one.

I have made countless videos about, “The difference between a real and a perceived end-of-life situation in intensive care.” If you’re not quite sure whether your loved one is in a real or in a perceived end-of-life situation, please lookup at our website, type in real versus perceived end-of-life situation, or simply contact us at intensivecarehotline.com. So, we can help you to work out whether your loved one is in a real or in a perceived end-of-life situation.

So, without further ado, let’s look at, “What to expect after the ventilator is removed in an end-of-life situation in intensive care?” Now also, thanks to my awesome team that’s working with me. We have also found by doing some research and analytics that other questions that are often typed into search engines to find out about this topic are anticipating distress and comfort for your loved one after ventilator discontinuation, caring for your loved one, anticipating distress and ensuring comfort after ventilator discontinuation and how to support your loved one, anticipating distress and promoting comfort after ventilation discontinuation. Let’s get started.

In today’s article, we delve into the topic of anticipating distress after discontinuation or cessation of mechanical ventilation in intensive care or in ICU at the end of life. Understanding the challenges and potential sources of distress during this critical phase is vital for health care professionals, patients, and their families. By providing comprehensive insights and practical guidance, we aim to support informed decision making and compassionate care in such delicate situations.

When we talk about informed decision making, that’s what I meant when I first started this video that you need to discern whether your loved one is in a real or in a perceived end of life situation because if your loved one is in a perceived end of life situation, there’s a very high chance that your loved one will continue to live and can survive intensive care. Let’s continue.

The importance of anticipating distress in situations like this. Anticipating distress after the discontinuation of mechanical ventilation is crucial in ensuring the well-being of patients and their families. This process involves recognizing and addressing potential challenges that may arise during end-of-life care in ICU. By proactively identifying and managing distressed health care providers can optimize patient comfort and facilitate a peaceful transition.

So, what I want to throw in here is well, a peaceful transition is not going to happen if ICUs withdraw treatment or withdraw a ventilator without patient or family consent. That is where often dispute happens in ICU and quite frankly, terminating someone’s life support in intensive care is not a unilateral decision. It’s not up to the intensive care team to make a decision to withdraw life support. That is ending someone’s life without consent from either a patient or from their power of attorney.

If they are withdrawing life support without consent, I argue that is murder. No other term for that. If there are disputes, once again, around if you think that an ICU team wants to withdraw life support illegally, without your or your family members’ consent, please contact us at intensivehotline.com. We can help you turn these situations around.  We’ve done it many, many times.

Next, factors influencing distress. Number one physiological factors, various physiological factors can contribute to distress after discontinuation of mechanical ventilation. These include pain, dyspnea, anxiety, and discomfort. It is essential for healthcare professionals to closely monitor and manage these symptoms through appropriate medications, therapies, and interventions.

Yes, I agree that this is the case, and you can manage those situations by giving midazolam morphine, fentanyl, or propofol to potentially numb the pain and make someone unconscious. But then the question needs to be asked here. Again, is this potentially also euthanasia? Could this be perceived as euthanasia? Once again, euthanasia is illegal in most countries.

Number two, psychological factors. Patients and their families may experience psychological distress such as fear, sadness, grief, and uncertainty during the end-of-life care process. Effective communication and emotional support are crucial in alleviating these psychological burdens and promoting a sense of acceptance and understanding.

Well, yes, a sense of acceptance and understanding is there if everyone is on the same page and if everyone agrees that end of life is the best course of action and also would also be approved of by a patient who’s incapacitated.

Next strategies for anticipating distress. To effectively anticipate distress and promote comfort during the discontinuation of mechanical ventilation, healthcare professionals can employ several strategies.

Number one, comprehensive assessment, conduct a thorough assessment of the patient’s physical, psychological, and emotional well-being. This assessment should involve multidisciplinary collaboration and consider the patient’s individual preferences, values, and goals.

Well, in this scenario where a comprehensive assessment is being made, that should also take into account. Number one, is it the patients and family’s preference to have life support withdrawn? Now, if we are talking about individual preferences, values, and goals, many, many patients and families in intensive care say, “Well, we don’t want to have end of life care in intensive care. We want to have end of life care at home.”

When I worked in intensive care, which I have done for over 20 years in three different countries, countless families told me in end-of-life situations in intensive care, “Well, it would be so much nicer to do that at home.” Well, a few years later, we are making this this a reality with Intensive Care at Home. So, end of life care for intensive care patients can also be provided with Intensive Care at Home. For more information, go to intensivecareathome.com.

Number two, advanced care planning. Engage in open and honest discussions with patients and their families regarding end-of-life preferences, including the use of mechanical ventilation and its discontinuation. Advanced care planning helps align medical interventions with the patient’s wishes and ensures the patient centered approach to care. That’s not rocket science, is it? That an advanced care plan always helps to remove any ambiguity in such difficult situations.

Number three, clear communication. Provide clear and compassionate communication to patients and their families throughout the process. Explain the goals of care, potential outcomes, and available support resources, address any concerns, fears or questions to foster trust and understanding, that’s well said here.

But the reality also is trust and understanding is not fostered if ICUs are pushing for end-of-life care and withdrawal of treatment without patient or family consent. Let’s face it. So, ICUs have yet to improve. In most ICUs anyway, improve their communication style around end-of-life care.

Let’s look at supportive interventions. To alleviate distress and optimize comfort during the discontinuation of mechanical ventilation, healthcare professionals can implement the following supportive interventions:

 

1. Pharmacological interventions. Use appropriate medications such as opiates and anxiolytics to manage pain, dyspnea, anxiety, and other distressing symptoms. Optimize medication regimens based on individual patient needs and preferences.

 

2. Non-pharmacological interventions. Employ non-pharmacological interventions such as music therapy, relaxation techniques, and mindfulness exercises to promote relaxation, reduce anxiety, and enhance overall well-being. Well, again, that’s well said here but not happening if there is conflict around end-of-life care and especially if patients, families, and ICU teams are not on the same page.

 

3. Family involvement. Encourage the active involvement of family members in decision making and care process. Of course, provide emotional support, counseling, and resources to help families navigate the challenges they may face during this difficult time.

 

Let’s look at some conclusions here, anticipating distress after the discontinuation of mechanical ventilation in ICU at the end of life is crucial for providing compassionate and patient-centered care. By understanding the factors influencing distress and deploying appropriate strategies and interventions, healthcare professionals can optimize patient comfort and support families during this challenging time.

Through effective communication, comprehensive assessment, and the integration of palliative care principles, we can ensure that patients receive the utmost compassion and dignity during the discontinuation of mechanical ventilation at the end of life.

So, I hope that helps you clarify what to expect during the cessation or discontinuation after the ventilator is removed in intensive care. But once again, I strongly urge you to not agree to anything that you are not okay with in intensive care, and I encourage you to always do your research, get an advocate, get consulting so that you can make informed decisions, which is what we’re doing here at intensivecarehotline.com. We are professional advocates and consultants for families in intensive care so that you can get maximum outcomes for you and your loved one in intensive care.

If you do have a loved one in intensive care, go to intensivecarehotline.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected] with your questions.

Also, have a look at our membership for families in intensive care at intensivecaresupport.org. There, you have access to me and my team, 24 hours a day, in a membership area and via email and we answer all questions, intensive care and Intensive Care at Home related.

If you need a medical record review in real time and you need a second opinion in real time, please contact us as well and we can help you with that. If you need a medical record review after intensive care, if you have unanswered questions, if you’re needing closure, or if you’re suspecting medical negligence, please contact us as well.

Subscribe to my YouTube channel  for regular updates for families in intensive care, click the like button, click the notification bell, and comment below what you want to see next and what questions and insights you have from this video.

Thanks for watching.

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

Take care.