Walking You Through The ICU Episode 5: Tools for Patient Advocacy

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Kali’s guest is Sara Merwin, an MPH level epidemiologist, who shares her perspective about helping patients navigate a hospital and the emergency department.

Episode Transcription

Kali Dayton
Sarah, thank you so much for coming on the podcast. Do you mind introducing yourself?

Sara Merwin
I’d be delighted to so my name is Sarah Merwin. I am an MPH level epidemiologist. And I come to you today in three different manners as a researcher, as a patient advocate, and as a family caregiver. So this this perfect, wonderful storm of experience and training has given me a lot of richness and perspective about helping patients navigate a hospital, emergency department. and

Kali Dayton
I see you experience and you have dedicated those experiences to writing the book correct and participating in other projects related to patient advocacy.

Sara Merwin
Yes, I was fortunate to, to cross paths with and share an office actually with Dr. Karen Friedman, who is the residency program director now at Northwell. In in New York, and we collaborated on a book called “The Informed Patient of Complete Guide to a Hospital Stay”, where we walk the reader through what they need to know to have a safer and more comfortable hospital encounter.

Kali Dayton
And all of these resources, everything we’re going to refer to will be included on the blog for this episode. So with what you’ve experienced, what you’ve shared, and how you guide patients and families, what is the role of family members or loved ones in the ICU throughout this hospitalization?

Sara Merwin
The role of family is so important in any medical encounter these days. We have to talk about the pre pandemic era and separated a little bit from the current landscape with COVID. But essentially, when you have a loved one in the hospital, your job is to advocate and make sure that everything happens as smoothly as possible to ensure the best outcome for your loved one.

So I like to think so I like to think of it as a test of one’s method mettle and strength. And of course, we want to “ace a test”. So we can use this acronym- ACE.

A is for ad good advocacy.

C is for communication.

And E is for education.

So you want to ace this one of the most important tests you may ever face in your life. So in the informed patient, we emphasize how important it is to stand up and and be vigilant it for your loved one in the hospital no matter where they are in their hospital journey. And this is because although although everyone who works in the hospital is there because they almost everyone is because they really care about the patients. Medicine is so complex these days, that there there needs to be participation from the patient and family side to ensure that things go smoothly. So that’s where the advocacy advocacy comes in.

Communication is the cornerstone of, of advocacy. When you think about it, it’s making sure that all the clinical people are in touch with each other and exchanging information correctly and in a timely manner. And that you the advocate have explained in and spoken To everyone taking care of your loved one, what their priorities wishes, and, and values are. And finally, education. The more you know about what’s happening, what the tests are, what the meds are, what the possible outcomes can be, the better your communications and advocacy skills will occur.

Kali Dayton
So ACE- advocacy, communication, education?

Sara Merwin
Yes.

Kali Dayton
And how have you seen that in action with families at the bedside?

Sara Merwin
We see that families who are present and knowledgeable and speak up have a better experience a better joint experience with the clinical team. They become partners with the clinical team, patients who can speak up for themselves also can participate in this communication. Partnering with the team, giving them the information that they need to take care of the patient is central to to this success.

One of the ways that we used to do this, before COVID imposed visitor restrictions on family members was to to have shifts of family members stay in the ICU with their loved one, such that they could watch over the patient and make sure that everything that needed to happen was happening. And to help the clinical team understand the patient’s needs, but also to bring comfort to the patient to keep them engaged to be involved in the actual day to day activities.

One small example is we know that patients who are at risk for delirium, based on their clinical status, their medication their age, they need to be constantly reoriented such that they don’t descend into a delirious episode. And so a family member present can engage with the patient if they’re awake. And show them pictures, talk about family, read them stories. And do things as simple as provide eyeglasses or hearing aids to orient them. Raising the shades in the room has been determined to to help patients differentiate, differentiate between day and night, it has also been shown to be helpful.

And when the ICU we have this complicated situation where many patients are sedated, and so that it makes it more difficult to engage with the patient. But working with the clinical team to ensure that the patient is woken up during their sedation episodes so that they have some awake time getting them out of bed, the family can be helpful and getting patients out of bed since we know that early mobilization is key to a successful post ICU in course, and can prevent what we know as post intense intensive care syndrome. And if you add which is P ICs. And if you add the F to that, it becomes the family who is both affected by post intensive care syndrome but also can help prevent it.

Kali Dayton
Absolutely, from my perspective, coming from an awake and walking ICU or patients, even and especially on the ventilator, our awake family is an intricate part of keeping them free of delirium. Calm oriented, and progressing throughout their critical illness. It is amazing to see patients that do have delirium from other things, you know, they’re not necessarily being given sedatives to make them comatose in this ICU. But there are lots of things that can cause delirium. But family is one of the only treatments for delirium.

And when we don’t automatically, deeply sedate these patients. That’s when we really get to see how incredibly powerful family can be. You as a family member, are the grounding point you are the familiar, safe person in this really confusing world of hallucinations and delusions that they’re having during delirium. You’re the person bringing them back to reality and making them feel like they’re okay, they’re safe.

Usually, they know who you are, and they know that you’re not going to harm them. And then things like everything you’ve shared, showing pictures, just bringing in normality during critical illness, helps them have the will to live, you are the person that gives them the reason to fight and to push through. So this is difficult in the era of COVID, when patients are being deprived of such a powerful treatment. To prevent and treat delirium, I am really upset about a lot of these visitation policies. And I think it’s like a lot of the listeners in my clinical podcast have told me, they feel like patients have received excessive sedation, extra medications that are harmful, because families are not there, that the clinicians don’t have the time the skills or even the power and influence that families do to calm their loved ones down.

So when they get scared, isolated, confused, they end up being sedated, whereas families can be the ones to calm them down without harmful sedatives. And so what you’re sharing is so powerful, I want families to know that that is their right and their role in the ICU is to be present. And to be a powerful member of the ICU team, in order to ultimately give their loved ones the best chance to survive and thrive. Families can help prevent, like you said, post ICU syndrome, you can help prevent post ICU, PTSD, Post ICU dementia, because of your ability to keep them grounded in reality.

Sara Merwin
So I like to say it takes a village and what that means is that it’s the entirety of the clinical staff and the paraprofessional staff plus the family who pull a patient through an episode. And I made reference before to the pre pandemic era where it was a it in many ICUs that there over the last 20 years there have been loosening. visiting our restrictions, even 20 years ago, families were only allowed in to the ICU during certain hours. And that has really changed particularly in more cutting edge forward thinking ICUs.

And another way that that that is reflected is in bedside rounds it with the family present, which is so important because the the information needs to flow to ways the clinical team can inform the family about what the next steps are, what’s happening, what diagnostic tools are being used, what tests what medications, what to expect, and what complications may ensue. But the family member for their part gets to tell to to humanize the experience by telling the team what’s important and what what the history is of their of their loved one.

So that becomes a very dynamic situation, which unfortunately, has been really impacted by the pandemic and in many ways. In addition to the visitor restrictions. We know that ICUs are overcrowded and healthcare workers are over stretched beyond belief. And so there is less attention to be paid to each patient and this is a really sub optimal situation, but we have to address it, because it is the current reality.

So, we have to move away from the ideal, where the clinical team has the time to talk with families at length and learn more about them via picture boards and journaling. And where the the family is actually present. So, what we have now in ICU is where there is no opportunity for family to to be present, they have to, they can remote in. And they can remote in by telephone and by video conferencing with the patient and with the team.

And I do encourage people to do that. I have navigated several patients it through the families of several patients through COVID icu episodes, where the visitors were not allowed or had very restricted times where they could be present. And it certainly takes a fair amount of effort to get the attention of the clinical team because they’re so busy. And so there is this, we want to protect our health care workers. And at the same time, we have to advocate for our loved ones. So we have to find that balance where we’re not being terrible pests or pains, but we have to advocate and that is not easy.

And so what I encourage people to do, if they’re in that situation is to is to connect with the social worker and the case manager to make sure that they have access remotely to the patient and to the the the intensivist or the bedside nurse, and to educate themselves as much as possible about what is actually going on with the patient. And some of this is very, very detailed.

They there, there are some great resources, which we’ll talk about before we finish about how families can learn about what the what happens in the ICU. Ventilator settings- it sounds a little overwhelming for the average person to learn about ventilator settings. But the more information that the the Patient Advocate has, the easier is to engage with the clinical team if there’s a limited amount of time, and that it’s usually by telephone.

So I encourage families with loved ones in the ICU to learn as much as they can a little bit at a time about about all the technology and about what specific medications the patient is on so that they can they can understand the the progress of the patient’s journey in the ICU, and to prepare a list of six synced list of questions before getting on the phone. Because we know that healthcare workers have extremely limited time these days. So so that’s one thing and the other. Of course, I know you’ve taught your listeners about the A to F bundle. And you want to just mention that quickly. And I’ll talk about that.

Kali Dayton
Yep, the ABCDEF bundle is a protocol that guides clinicians to help patients essentially be awake and moving on the ventilator. It helps us understand when patients are appropriate to be awake on the ventilator and how and when to mobilize them and utilize family in that process.

Sara Merwin
So one of the things that that family members can do is if if they learn about something like the ABCDEF bundle, and they see that the elements are not being followed. They can they can politely suggest they can educate the ICU team and say I’ve heard for example, I like scripts.

So you might say to To the intensivist, or the PA or the nurse, “I have heard that some ICUs can get patients out of bed during even when they’re on ventilatory support, do you think that’s possible for, for my wife, husband,..( with whoever the patient is.)” And this kind of prompting can be helpful. Of course, if visitation is allowed, families can ask if they can actually participate in the walking because during these these COVID times, when it takes a team of six people to turn a patient on, on their their bellies with on a ventilator, we know that all hands are on deck, and there aren’t a lot of hands to go around. So to the extent that if you’re able to be present in the ICU, you can actually do the lifting and helping, I think that, that shows that that you are part of the team. And it also it can give some relief to the team.

Kali Dayton
Absolutely. And I have experienced that repeatedly with families. You as a family member are probably eager to be hands on. And I personally enjoy having family be involved. Some ICUs if a patient has soiled themselves in the bed, they make the families leave before they can clean them up. And of course, I believe every family has own dynamics. And I as a nurse, I would ask, “Are you okay being here with the patient being cleaned up?”, I would ask the patient “Do you mind if your wife is here while we clean you up?”

So understanding your dynamics, your comfort, but I’ve had family members help with bed baths, I think that’s extremely therapeutic, because you as a family member want to feel like you’re helping you’re feeling so much love and concern for your loved one. That it is innate to want to serve them and you have every right to but collaborate with your ICU team.

Family members push a wheelchair behind them or an IV pole or hold a Foley bag, hold their hand while they walk or hold their arm. You know, families can be involved mobility, and you’re right there- that can be a relief to the team. So it might be tricky because some teams are more acclimated to having families be involved than others. But ideally, we do want families to be involved that does help patient outcomes.

So as a family member, you do have a right to be involved. Navigate that delicately. If you like you said if you see that elements of the ABCDEF bundle are not being applied to your loved ones care, you do have a right to advocate for that. And I think the examples you gave the scripts that you gave are perfect instead of saying, “Hey, why are you trying to kill my loved one medazepam?” rather say, “Is there a reason my loved one is sedated? What is the indicator for it? Is that a need?” If there is a need, You can ask, “Does Midazolam as a first choice for sedation fit into the ABCDE F bundle? are we applying the ABCDE F until my loved ones care? I know that medazolam is a benzodiazepine. What do you understand as the risks? Is it worth the risk of delirium, increased mortality time on the ventilator? Is there another choice that we can use?” Doing these things in a very non aggressive non challenging way, but having that open communication is your right. I think sometimes families feel like they’re just spectators if that in the ICU, but you make the point, Sara, that they’re not. They’re part of the ICU team.

Sara Merwin
They’re not, and I think one one point that we make all the time is it is okay to question things. It’s appropriate to question things, we know that healthcare workers are getting battered now, not just in terms of work demands, but also by by anti vaxxers and families who do not subscribe to to the idea that COVID exists as as an entity. So we want to be careful about the delicate balance, but I think it needs to be understood that it is it is appropriate and important to keep asking questions.

And also the other thing in my experience is that it is hard to get a hold of I think I made this point before But I want to reiterate this. So in one COVID ICU where I was helping a family, we would we would call we wanted to have, we wanted to talk with a doctor, or we wanted to set up a FaceTime encounter between the daughter and the mother. And it took several tries. So don’t give up be tenacious, but be understood be tenacious, but be understanding that, that there are emergencies going on all the time in the ICU, whether during COVID or not, and it’s certainly exacerbated now.

It is really important and vital, we’ll use the word vital- to connect with your patient. It can be very disturbing, I know that, that watching a patient struggle through a spontaneous breathing trial can be absolutely heart wrenching. And particularly if if you’re not in the room, but if you’re on a video, hook up with the patient, and you see someone struggling for air. It can be really a terrible experience. It’s hard enough in person, but a lot of strength and a lot of fortitude is needed to get through this. But that connection with the patient is is so important. And as difficult as it is this. Now now that we’re on the topic of letting the sedation wear off, we just segued into that the spontaneous breathing trials, the value of them cannot be overstated.

Kali Dayton
No, we have to understand that that’s a life-saving intervention. The more a family member pushes to get sedation off to get their family member free of delirium, and mobilized, the more likely the family the patient is to survive. So though that experience of witnessing delirium is extremely traumatizing for everyone involved -it traumatizes clinicians! They don’t want to see that a patient is scared and confused and terrified. They don’t want to see that. So they turn sedation back on thinking that that is going to fix the problem.

As a family member, when you educate yourself, like in the other episodes on delirium, and the ABCDE F bundle, when you understand that that is going to be part of the process, that they’re delirious, that the solution is not to restart sedation, but to help them work through the delirium and to give it time and to hang in there and push through.

Then you can advocate for that you can say “no, let me hold their hand. Let me help them, let me talk to them. And please, don’t restart sedation, can physical therapy and occupational therapy come in and get them up to try to wear them out and relieve some of this anxiety?” Those kinds of things are within your right to advocate for and it comes from you understanding the reality of the situation. Even if the ICU team is not used to those practices. If it is evidence based, if there is research behind it, if that is the standard of care, you can still advocate for that. And kind of be part of changing the perspective and the practices of the ICU team.

So, I don’t envy your situation as a family member. That is a very difficult thing to navigate and yet you have the right to know and to advocate for correct practices because it is your loved one and you want to bring home that same person that you brought to the hospital. Sara, what other resources are available to family members?

Sara Merwin
Well, for a general overview, our book “The informed Patient”. It can be helpful for communication and advocacy skills. We there is a chapter on the ICU. And there are lots of explanations about medications and tests that are applicable in the ICU. But it is a general book specifically for the ICU.

There is a brand new guide out called “ICU Guide For Families” by Dr. Lara Goitein. I’ve I looked at it briefly online and it looks fantastic. And in terms of websites, www.icusteps.org, www.icudelirium.org There’s a book by a well known intensivist, Dr. Wes Ely, called “Every Deep Dawn Drawn Breath” that I has been receiving really wonderful reviews for its humanity. But also its it its humanistic approach to ICU care.

And I have to recommend also that www.criticalcaregame.com is a project I’m involved with. That is it’s for it’s a game, it’s a card game, but the flashcards can be used off label as we say, instead of playing the game, the flashcards explain the diagnoses, the the complications, the therapies, and the and who what all the roles of the, the different professional individuals, families will encounter in the ICU. So I recommend that as a resource. It was designed by a intensivist. And I’ve been involved in translating the ICU jargon into into plain language. Because I do believe that families need to understand medical jargon, but also understand the plain language that explains it.

Kali Dayton
Yeah, it’s so much to navigate complex verbiage. But thank you for investing your time and making that a game something user friendly, comprehensive and even fun for families to use to understand what’s going on with their loved one. And everything you’ve mentioned will be included in the blog. When have you seen these principles in action, do you have any, any stories or experiences you can share with our listeners?

Sara Merwin
I do have have a story. So I’ve spoken a little bit about the patients that I’ve navigated who aren’t family members, and I do bring a lot of passion to that experience. And that passion and that tunnel vision and that focus is certainly heightened when I’m advocating for family members in the ICU and in the hospital. And I have to say I’ve been accused of losing my perspective. And because I become so hyper focused on doing the right thing for the patient, that for for my family members and I have watched my my siblings and my my father who’s a very old school, who was an old school gentlemanly type, say to me “Just leave the doctors alone, please.”

And my family members cringe and they, you know, they they tell me what a pain I am and what a passed on when my father was in the ICU a couple of summers ago for an extended period. I used my fierce advocacy skills and intervened and interfered and questioned everything and and asked for.

I was very polite, but I was very steadfast and and felt very empowered to ask for physical therapy to come and get him out of bed and for you know, I my wishes for how he should be managed. And and I was dealing directly with the the intensivist in charge of the of the units. And so at one point the this head intensivist said to me and it was such a moment. He said, “When I come back in my next life, I want you to be my daughter.” And it was such a funny moment for me because on one hand my family is is like “Just leave them alone.”- and he really appreciated my advocacy skills. So as long as it is done with respect to the team, I think it can be a very successful strategy to to help them learn about this person who is so important to you.

Kali Dayton
Just because the process is difficult or there is oposition, doesn’t mean that it’s not right. Often the things that are most important, and the most correct are the most difficult. And the intensivist recognized that you were doing the right thing. And that’s how he would want to be treated by his family members and clinicians.

I’ve done surveys with the listeners of the clinician podcast, and I’ve asked questions such as, “What would you do if your loved one was in an ICU, on mechanical ventilation, being cared for by a team that did not practice the ABCDEF bundle?”

And these are listeners, these are clinicians that understand the bundle, they understand. And their goal is to have patients awake and moving on the ventilator. And they had responses like “I would transfer my loved one”, “I would push, push, push, I’d be super annoying,”- you know, the clinicians themselves would do that.

And so I think it’s helping the clinicians understand that this is a human being in the bed, I think we are in such a dehumanized condition. In the hospitals, because of all these circumstances, it’s not because the clinicians are inhumane, but family members help us remember that that is a person and that and who that person is. So as a family member, it’s okay to be a little bit persistent and annoying. Don’t be inappropriate, or irate or obnoxious or impede care. But don’t be afraid to advocate for what is right.

Sara Merwin
I agree. And it’s very unfortunate the timing of the pandemic, because I think there’s been a huge revolution in critical care in terms of making it changing the the culture has changed, such that patient centered care person centered care and humanity is is just in even the way we see ICU, the physical layout has changed over the last few years, it is there has been a real change in recognizing how important bringing more humanity to the culture of the ICU.

And a lot of the progress that has been made is interrupted by the pandemic in this timing is so very unfortunate. But what we can do is, is once we take the temperature of the ICU and understand what its values are, I was gonna bring up the the whole, “I would transfer them out”- that’s almost not possible to do these days, you can’t even get an ICU bed.

I think family members can do a little bit of research and find out what they’re dealing with in terms of whether the ICU has in this particular ICU that they are involved with, with their family member has embraced more of the cutting edge approaches, and forward thinking approaches to to patient care. And then using that information, they can they can position themselves as a, you know, a co team member or someone who will bring some education to the experience. And that’s why.

And the final point I want to make is that I can’t overemphasize how important it is to journal and to, to write down everything. Everything you’re learning about you your loved ones, ICU journey, you’re you want to see the meds, you you want to understand what meds are being added What are being taken away. You want to see progress with the ICU with the ventilator settings, you want us you want to mark down how often the patient is getting out of bed. I think I think that experience only strengthens the involvement. And it allows the questions to flow in a much more productive way instead of being vague. And that is it does mean undertaking a whole learning journey for for the loved one. And so if there’s one person in the family who wants to be a spokesperson, that also can be helpful.

Kali Dayton
Absolutely. We talked about that, in another episode how one person should be that spokesperson that helps keep communication direct, clear and succinct for you and for the ICU team. That’s one of the ways that you can really get clear attention and communication without overburden between the ICU team. You’ve made such powerful points and provided such important information. Anything else you would add?

Sara Merwin
No, because I’ll just start repeating myself.

Kali Dayton
Oh, this has been wonderful. Sarah, thank you so much. And again, all of those resources, you’ve added your book, The the game, all the websites will be in the blog. So for each episode, there’s a lot of homework to do. So go do your homework!

Transcribed by https://otter.ai

Referenced Resources