Today's topic is one that is near and dear to the heart of this risk management professional, and that is the informed refusal process. Having been called to many an L&D unit at a crucial time when the condition of the patient was dire and a C-section was needed, I understand the various factors that may bring a patient to a point of refusing care.
The care team may encounter a situation where ethics, cultural beliefs, legal repercussions, moral distress, and risk management all intersect. Sometimes the refusals have to do with a personal situation that the patient's been challenged to resolve. I remember a time in the emergency department when a patient presented with an emergency condition and desperately needed admission. She refused. She wanted to leave.
After a one-on-one discussion, we learned that her dog had had puppies the night before, all eight of them. She had only run out to the store. And when she became ill, she landed in the back of an ambulance. Living alone, she wanted to ensure the pups and puppy mom were safe and felt she just needed to go home. With the care team coming to the rescue
and with some coordination, the issue was resolved, and the patient was staying in the hospital and further stabilized. So, with that all in mind, my first question to both of you brings me to first, informed consent. Very hard to talk about informed refusal without talking about informed consent. So, my question to you both, as there are many essential elements of informed consent for the maternal health patient, what are the most critical?
DEBBIE KETCHUM : Well, hello, Joan. And hi, KK. So nice to be here with you today. And thank you for bringing up this topic of informed consent. It's one that has really been in my heart for my years as a clinician and as a leader, and this is truly a meaningful and necessary conversation.
The American College of Obstetricians and Gynecologists have a detailed committee opinion on informed consent and shared decision making in obstetrics and gynecology. And I do like to refer to that time to time, especially with my nursing ethics and the care we provide at the bedside and in the outpatient setting.
So, it reinforces the goal of informed and shared decision-making consent process to provide patients with information that is necessary and relevant to their decision making. And it includes the risks, benefits of accepting or declining the recommended treatment options, and it also helps them to assist patients in identifying the best course of action for their medical care.
and the essential elements that I think of often include information regarding admission, procedures, treatments, tests, and having an individualized patient centered and shared informed consent process involving discussion with the patient regarding the benefits and risks and alternatives of treatment options.
Karen Kolega : Thanks so much for that. And as you said, you're welcome. Great to see you, Joan. Great to talk with you, Deb. And I have to tell you, I'm always very excited about this podcast because I think we are covering such important information and we kind of hit the hot topics. But I think people want to hear about that.
So informed consent refusal of care is a great one. Deb, you outlined all of the elements quite well. I think the thing that comes most to mind when I think about informed consent in an acute care setting is that often, there's this misconception that it's a piece of paper. And it's truly a discussion. It's a discussion of shared decision making between the clinical team and the patient and patient family.
And the practice is to have a conversation. And a form should be completed to document that that conversation actually did occur. And then if you need to update that, certainly, you can do so. It needs to have a provider's note that includes the elements that Deb already listed. So, what are the benefits, what are the risks, and what are the alternatives to the treatment options?
I have to tell you, the one that comes to mind a whole lot when I think about maternal care is use of the medication oxytocin for induction of labor. Has there truly been an informed consent discussion about that? It's shared decision making. So, have we talked about the risks, the benefits, and the alternatives of that because it is a high-risk medication? And certainly, we need to have the patient be part of that decision.
Karen, I just want to add to what you said. And again, it's from a risk management perspective, in the world of risk, we think that the best practice for informed consent involves in including the patient in the decision making. We would encourage checking on the patient's comprehension,
ensure the discussion is happening at the right level of understanding and in the right language. We would do so in an environment of ease and calm when a patient or their surrogate decision maker can emotionally hear and accept the information delivered. Again, from a risk management perspective informed consent, it's just not a onetime event.
Approaching the patient throughout the pregnancy and before the delivery period happens at various times allows for questions to be asked and answered while the patient is not in an acute state, in the physician practice, and able to have a conversation. I always feel that informed consent for the expectant person is just an evolving process, which leads me to the next question. How does patient centered care and shared decision making come into play when a patient refuses?
KAREN KOLEGA : Well, it's a great question, Joan. And I think that first and foremost, you have to be aware that there are several different ways that a patient can indicate that they're refusing care. For example, they may refuse some aspects of the care plan but not the entire care plan. They may decide to leave against medical advice. Many of us have been in that situation. They may elope, or they may leave before care has been actually initiated. And each one of those situations brings a different kind of risk that we need to be aware of. And it's important to know the difference.
DEBBIE KETCHUM : Thank you, KK. That's very comprehensive, and you're so right. And when think of how the patient centered care and shared decision making comes into play, I think it's also so equally important to listen. Find out more about what's prompting the refusal. Like your story before with the puppies, I think you may find that the problem has a solution. And this example of the cardiac patient in the Ed and her puppies really does highlight some of the examples that could come to play. It may also be spiritual. It may be cultural. It's just good to listen and hear what they are sharing with us.
JOAN PORCARO : Thank you, Miss Debbie. I think it's an interesting situation is that the idea of refusing care. And there's been, in my mind, an urban legend that once a patient refuses one aspect of care, the default is that they've refused all aspects of care. And then what happens? The care stops. The discharge planning stops. Prescriptions and plan of care is halted.
And usually, that truly should not be the case. Care does not stop. It's a choice to go ahead and refuse care and work with the care team so that we ensure that we have a safe situation even if they're going to leave, of course. So going back to the example of the patient with the litter of puppies, still, had she decided to leave, we would have still given her discharge instructions.
We would have focused on a safe departure, the prescription she would need, and we would always provide an invitation to return to the hospital if her situation changes, and make sure to remind her that it would be OK to call EMS. So, in this scenario, we have a patient with full capacity for medical decision making. She elected to leave. She was agreeable later with a home health evaluation, which we were able to expedite. Puppy sitters were found, and the patient returned to the hospital.
So, when a notice of lawsuit happens in my world of risk management and you pull your defense team together, the first couple things we look at, one of them is, what happened with informed consent? Was there a refusal? So that being said, I want to pose to you another question. So, in both of your experience what kinds of care, whether it be treatment, medications, procedures, do you typically see being refused during the labor process?
DEBBIE KETCHUM : Great question, Joan. And I love hearing your examples that you provide as well. So, thank you for that. The kinds of treatments and procedures typically seen are refusal of medications are refusal of intravenous catheter or an IV. Pelvic exams. They may refuse blood products. Even a cesarean section or operative vaginal deliveries such as forceps or vacuums. Some may refuse prenatal labs and drug screening.
KAREN KOLEGA : That's a very comprehensive list, Deb. And that's exactly what I typically see in the intrapartum and period.
JOAN PORCARO : So, KK, when you see these refusals happen, what do you think prompts the refusal and how do you think the care team should approach such refusals?
KAREN KOLEGA : Well, I think what Deb said earlier is so important. You have to listen. So certainly, assess and listen because it could be cultural differences, could be religious beliefs, she talked about blood products that's common with religious beliefs, social influence, and then there could just be personal preferences. There's so many different factors that can influence a patient's refusal. And specifics of what to do in that situation, they vary. But let's take an example as an operative vaginal delivery. And understand, I'm coming from a nurse perspective.
So operative vaginal delivery is when you need to use either forceps or vacuum to deliver the baby. And so, you have to have conversations, education, and benefit-- explain the benefits and the risks of having that operative vaginal delivery and convey that information to-- Joan, as you pointed out, at a level they could understand and in the language they can understand. So sometimes, that would mean using a language service provider, and many of us have those. They've actually become quite modernized, which is great.
As a nurse one of the biggest things, we have in our toolkit is the ability to educate because we have a knowledge base that we can help share and try and transfer that information. We need to document that conversation. And in the end, they might still refuse to participate in that part of the care. But again, timeliness is important. And Joan, you talked about this before, pregnancy is a continuum. So, we have a long opportunity during prenatal periods to have calm discussions.
I just don't think that it's probably our best choice to have a discussion about whether or not you want an operative vaginal delivery when you have a height of a very acute situation. And mother's typically in a lot of pain at that point. So, all of those things come into play when you look at that refusal of care.
DEBBIE KETCHUM : Such a good point, KK.
JOAN PORCARO : Thank you, Karen. So, I want to think a little bit about how we educate new and expectant moms. So, with each trimester, there comes new learning opportunities. And think you've already mentioned to me I dated myself when I referred to the OB trifold form. Now, likely those parts and pieces of that form are included in an EMR.
But with each trimester, the patient receives new information, new education. That can be reinforced. And the Office setting, whenever possible, is the best place for that discussion to happen because we have as best practice that provider and patient relationship growing and having mutual respect for that conversation.
KAREN KOLEGA : If I could just add, that is such a great point. And I think the important thing we need to recognize that is a shift in practice because it is typically-- those conversations typically happen in an acute care setting. And as interdisciplinary teams, we can get together and have discussions about, can we shift some of those into the prenatal care setting, where you have a calmer environment? And that transfer of knowledge is much more likely. So great point.
JOAN PORCARO : Thank you, KK. So, what happens when treatment is happening at delivery and whatever is being recommended is truly needed to maintain the life of mother and fetus and that treatment is being refused? Mom has capacity for medical decision making, we want to talk a little bit more about next steps. So, I'm going to throw a scenario out there.
So, we have patient Hani. She's a 28-year-old refugee. She's 38 weeks in her first pregnancy. She arrives to the obstetrical department at a local hospital, and she is in labor. She continues to labor for several hours, making very slow and difficult progress. However, now the fetal heart rates changed, fetal movements declined, Hani's condition also changes. She's hemorrhaging. Nonsurgical interventions are attempted without success, and an emergency cesarean section is imminent.
The team meets with the patient and the family to discuss the condition of the fetus, discuss the benefits and alternatives that could be offered. However, Hani, citing religious and cultural objections, she refuses the C-section, as does her spouse. Her family, mother and sisters, are at her bedside. They agree with her. Hani has capacity to make her own decisions. OK. What happens next?
DEBBIE KETCHUM : Joan, this is an example that I have really lived through. And so actually, when you're reading it, notice that I'm having a visceral reaction. Emotional and post trauma. My palms are sweaty. I felt my heart beating faster. These really can be emotionally and morally taxing for not only the family, the patient, but all the care teams, and we just want to do the right thing. And our core goal is to have safe care. And so, these are really tough times, I want to say, for our maternal child teams.
So, and in this situation, it's just not impacting one patient. It's impacting two. And considering the patient is refusing and the family is supporting the patient's decision, the nurse or provider or/and all would consider, and I highly recommend, instituting the chain of command or chain of communication. Institute and ethical consult. Ethics can be very helpful in these situations. Invite a representative from the culture or religion and have conversations. Educate, consult, and advocate.
When it is a life decision refusal, pull in palliative care as well to prepare for end of life, whether it's a newborn mother or both from the decision of the family and the patient. One area that's not often thought of as palliative care and they can be so helpful for the patient, for the family, and the care teams, palliative care is compassionate support, and it's part of the continuum of care. And a rapid critical response team is also available to support the clinicians who suffer moral distress.
JOAN PORCARO : Thank you, Deb. I'm really appreciative that you brought up the aspect of moral distress because as health care professionals, we're there to support and help and to stand by and watch as things unfold in a way that's very unsettling is very unsettling, of course, for the caregiving team. And when these situations have happened, because I have had a few scenarios like this in my career, I get a call sometimes from the doctor or the floor and they ask risk management, is there a legal solution for these situations when a patient's refusing care that's critical to their life and their fetus's life?
And again, if I could share again that this particular scenario truly is an example where legal, risk management, and ethics intersect. And it's really difficult to answer the question with just a yes or a no. State laws vary. 28 states allow for state mandated c-sections. In some states, the refusal of care for a c-section is deemed child abuse. Any thoughts on that?
DEBBIE KETCHUM : I recall those discussions happening within some of my situations. And one of the discussions was, we need to-- do we need to contact a judge? And of course, it happened. The one that I'm really thinking about happened on a weekend. And what are our processes? And so, we had to get legal involved to help ensure that we looked at the law and how far did we want to take it or how far could we take it for life saving measures?
But I really appreciate taking a case by case and involving ethics, risk, legal in your medical care team and palliative care when necessary to help make the appropriate decisions without creating additional trauma to the patient for sure and considering your families and your care teams.
KAREN KOLEGA : I think the only thing I have to add is that it shows how important a podcast like this is for learning more about refusal of care and informed consent. Because it's not under the bell curve. It's your exception where these happen. And so, it's something you're not doing as frequently. So, the more versed you can get in it and the more comfortable that you become, like Deb already alluded to, it's typically like a Saturday at 2:00 AM when these things happen. And you just have to be in that frame of mind that we're going to need interdisciplinary approach to do what's best for all parties involved.
DEBBIE KETCHUM : I was also thinking about some of the questions that come up. And it's not just like a refusal of a life saving measure, but where patients elope or sign out AMA. And teams often have the questions about, what are our responsibilities once they leave and they went against medical advice and they took home a baby that was having respiratory distress, for example, or they elope?
And there's been situations where patients, after they've eloped, got injured off of the campus. And the question comes up, what are our medical responsibilities? And maybe in the future, that'd be a good topic to also discuss because there's just so many looming questions on informed consent and then against medical advice, for example. But I'm really thankful that we had a chance to discuss this informed consent process and how essential it is to listen, understand their culture, their religion, and have a comprehensive approach.
JOAN PORCARO : Thank you, Deb. And so we're coming up to the end of our time together for this session. Karen, Debbie, if you could only have one thing to communicate to the audience, what would that takeaway point be?
DEBBIE KETCHUM : If I could pick one, I would say, do not take informed consent for granted and have thoughtful conversations with your patients.
KAREN KOLEGA : I hate that you always limit me to one, Joan, because I've got three takeaways. But I'm going to stick with the first and say that again, I'm always going to have that nurse perspective. So, Deb already alluded to ACOG has a very clear statement on informed consent. AWHONN also has a respectful maternal care toolkit. If you're not familiar with it, it's something you should become familiar with.
And there is a whole section on shared decision making and informed consent. So, as you started, Joan, you said, you can't go to refusal of care without informed consent. So, it's really informative to learn as much as you can about informed consent because then it helps you to understand more about refusal of care.
DEBBIE KETCHUM : That's an exceptional call out, KK.
JOAN PORCARO : I want to take this time to thank you both. I first want to thank Karen for joining us today.
KAREN KOLEGA : Joan, it's always a pleasure. As I said in the beginning, you always have great topics you bring to the table. I think our listener audience really appreciates that. So, thank you. Again, it's always an honor and a pleasure.
JOAN PORCARO : And as always, Deb, I appreciate your time and you bring so much expertise to the conversation. So, thank you, again, for joining us today.
DEBBIE KETCHUM : Well, thank you for having me. It really truly is an honor. And being able to represent our care teams and our patients and to spend this time together with you and KK is the highlight of my year. So, thank you.
JOAN PORCARO : And in closing, I want to thank our audience and those who have tuned into our discussion. I hope you'll be joining us for future discussions in the coming weeks. And again, thank you for listening to our podcast WTW Vital Signs.
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