Melanie Cole, MS (Host): Adjustment to disability, an interesting case study today on Better Edge, a Northwestern Medicine podcast for physicians. I'm Melanie Cole. And we have a panel for you today in this Physician Roundtable with Dr. Eric Larson, he's the Director of Psychology and Brain Injury at Northwestern Medicine Marianjoy Rehabilitation Hospital; Dr. Dolly Devara, she's a physiatrist at Marianjoy Rehabilitation Hospital; and Dr. Arnold Hoskins, he's the Manager of the Spiritual Care Department and Co-Chair of the Ethics Committee at Marianjoy Rehabilitation Hospital.

Doctors, thank you so much for joining us for this roundtable today. And Dr. Larson, I'd like to start with you. Can you please share a recent case in which you encountered a complex situation where a patient preference conflicted with their choices after experiencing a life-altering condition?

Dr Eric Larson: Well, adjustment to disability is complicated. This case that we're going to talk about today shows how hard it is to anticipate even your own reaction to disability. We treated this patient who was diagnosed with a mass in his brain. Before his diagnosis, he had assigned his power of attorney to a family member. He communicated to that family member his belief that life would not be worth living if you have a severe disability. Then when that patient was diagnosed with a brain mass, he presented to Northwestern Medicine and we began our care. Dr. Devara, could you give a little bit of background on the patient's medical specifics?

Dr Dolly Devara: Sure. Thanks, Dr. Larson. So, this particular patient had other complicated past medical history, including a head and neck cancer. So, he was middle-aged, had battled through cancer and, at some point, had a power of attorney and had given his advance directives and had already spoken about this in detail with his power of attorney and his family members.

And now, like you mentioned, Dr. Larson has a new diagnosis of brain mass with new disability, including dense lateral weakness on the right side. The hospital course was complicated by the patient required placement of a breathing tube, a tracheostomy, and also placement of a feeding tube, a PEG tube to address nutritional needs. So, the patient presented now after a prolonged hospital stay to the rehab hospital with, like I mentioned, the breathing tube and the PEG tube. And now, we were talking about, you know, after they came to the rehab, we're talking about long-term goals, short-term goals. And we did mention perhaps getting off the breathing tube at some point and also getting a new video swallow, seeing if he qualifies for oral feeds and such. So, that was the basic premise under which the admission was made to rehab.

Dr Eric Larson: And I think the reason why it was hard for the family to figure out how they were going to direct care is they were really following two different set of directions or expectations. One of which was what the patient had provided in advance of the diagnosis, trying to imagine what it would be like in this situation. And one of which is the patient himself after the onset of these problems, trying to understand whether his life still was worth living. And much to his surprise, as he's going through it, he realizes even with a severe disability, you can still find quality of life.

Unfortunately, the family was presented with a dilemma. They had to figure out who are they going to listen to, the patient before the diagnosis, when presumably he was in clear state of mind and able to make decisions that were not affected by cognitive impairment or the patient after the onset when he has already been compromised in terms of his thinking abilities, but he is in the present, actually seeing what it's like to live with those disabilities. And they were struggling. I feel like what we did at Marianjoy is we gave the family a space to try and figure out what they needed to do. I feel like when we provided them with education, they were given the information of what to expect. But more importantly, we surrounded them with a team that tried to coach them through the process of making these decisions and adjusting to the changes that the patient faced.

Dr Arnold Hoskins: And I might add, Dr. Larson, this is Dr. Hoskins, that typically when there is a power of attorney involved and that particular person who has that power of attorney authority and is quite vocal, oftentimes overshadows what the patient's desires are. And in this particular family meeting that we had, we had to redirect our conversation back to the patient rather than the power of attorney expressing what her views were, and her wishes were. And what I liked about our session, Dr. Larson, is that the educational piece that you provided helped give a better insight to the person who had the power of attorney to understand that there is a dichotomy of cognitiveness or lack thereof that the patient was experiencing, or experiences from one time to another. And redirecting the attention to the needs of the patient, as well as educating the family, was the catalyst to us being able to get to an agreement as to how we were to move forward with this patient.

Dr Dolly Devara: I would like to add into this to agree with both Dr. Larson and Dr. Hoskins. At the acute hospital, patients are given a new diagnosis, they're treated accordingly, they're then left with whatever the medical impairments and also the functional impairments and the cognitive impairments that accompany that pathology and the diagnosis.

So, the patient himself, of course, is living through this new diagnosis and the impairments, but also the family has just been given a new snapshot of what their loved one is going through. So, they are just now given a new diagnosis, a new impairment, and are just wrapping their minds around it. And so, this was the situation in which we inherited the patient. and also navigating the family on how to deal with this.

Melanie Cole, MS: So, what you're all saying, first of all, is this is a failure of imagination. We believe the two are contradictory and it's hard to imagine living a purposeful life with a disability until it happens to one of us. So, Dr. Devara, I'd like you to speak about how Marianjoy provides assistance to patients who are experiencing profound emotional challenges, such as mourning the loss of abilities, mobility, limbs, independence. How did Marianjoy help the patient and family in this specific instance move forward? I would like you all to respond here. But Dr. Devara, why don't you start us here?

Dr Dolly Devara: Sure, Melanie.

So, we are a freestanding rehab hospital.

 We get them to Marianjoy for optimization of their functional impairments, cognitive impairments, and such. Usual length of stay at a rehab hospital is about two to three weeks, 14 to 21 days, which is much longer than the stay at an acute hospital. So, we get to see patients, you know, slowly evolve over time, reconcile to the new diagnosis, to the new impairments. And that is when we see a change in the dynamics, whether it's emotional, social issues, or they're now beginning to grieve what their new disposition is going to be like, whether it's integrating back into the society, into their work lives, or now they're beginning to realize their impairments and are mourning the loss of a limb, whether it's an amputation patient or the loss of ability to do certain tasks because they now have a hemiparesis, weakness on one side, their speech is impaired. They're not able to swallow. So, all these are just beginning to sink in and they are now evolving emotionally, trying to deal with all these impairments that they are left with.

And as we're talking about this particular case, it's not just the patient, but we take into account the patient's family members to walk along with the patient and the family through this journey of recovery.

Melanie Cole, MS: Well, thank you for that, Dr. Devara. And Dr. Hoskins, I'd like you to expand in just a little bit on how Marianjoy is different from other hospitals. What extra measures do you take to help patients and their loved ones after a life-changing sickness or injury? Speak about specifics at Marianjoy and the team.

Dr Arnold Hoskins: Well, we are unique in that Marianjoy has an interdisciplinary approach to providing care to the patient. Our philosophy is to provide healing through the body, the spirit, and the soul. What we concentrate on is all aspects of the human being, the human body. So for example, Dr. Devara, who is a medical doctor, typically she provides care of the patient's body; dr. Larson typically provides for the patient's mind. And me and my team, we provide services for the patient's spirit. And so, that's the approach that we take in providing care to our patients. And more often than not, hospitals, they take care of the body and they omit other aspects of the personhood. And our interdisciplinary approach is to consider all aspects of a person. And so when we provide care, we provide it as an interdisciplinary team in order that we give total care to the person.

And one of the things that hospitals will learn is that a patient gets greater satisfaction when they see that a hospital provides care in all three of these areas: the mind, the body, and the spirit. And that's a critical part of providing care to the whole person versus a part of the person. So if a person comes in with a psychological problem and they're just getting care from Dr. Larson, well, we're omitting the other aspects of the person's care. But when a patient is provided all aspects of care, you will find that the patient gets greater satisfaction and the hospital does a greater service in providing care for the population to whom they are serving.

Dr Eric Larson: And the thing that I think is particularly significant about what you were saying, Dr. Hoskins, is that the satisfaction the patient experiences is not only satisfaction with the services they've been provided, they experience greater satisfaction with their own quality of life.

When you have a team that is not only helping a patient advance in their physical state, but also understanding the social and the context that they're in, the meaning of why it is that it's important for them to make those gains The part that I think some hospitals might lag a little bit behind is putting a name on what it is that we're doing. Not just learning how to take more steps, but finding a destination where those steps are going to take you, understanding why is it that I want to get better. A lot of rehab hospitals out there have PT/OT and speech to help them accomplish those treatment goals. Not a lot of them have a team that has done this long enough and has so many different disciplines represented who can help the patient understand why it's important to make those gains, to keep them working on them, and ultimately to direct them towards something that's important once they get home.

Dr Arnold Hoskins: Yeah, absolutely. And one of the unique things that we also do at Marianjoy, for example, we have a number of patients who have a loss of limb. And so, we have a program whereby we target patients who have losses and we have a ceremony specifically designed for them, recognizing their loss of limb. More often than not, hospitals, after the amputation of part of a patient's body, they patch them up and they will do some rehab and they send them home. But what we do is we have a ceremony acknowledging their laws. And we're recognizing that there is a grief process that continues on. And when we have this loss of limb ritual, it's a part of the grief process that is often ignored through hospitals because they just don't have the bandwidth or they don't think it through that the patient needs much more than the amputation so that does not spread, patching up, the rehab, and then send them home. Well, there's a piece missing, and there's a spiritual value that needs to be highlighted, and it has nothing to do with a particular religion of sort, but it is a spiritual value that must be honored. And so, we have this loss of limb ritual as part of the process of acknowledging their loss, not ignoring this grief, but helping them transition to a new life through the grief process and we have found that this particular ceremony has been very powerful for our patients who have experienced a loss of limb.

Melanie Cole, MS: What a comprehensive, compassionate approach you all have for your patients. I'd like to give you each a final thought here. Dr. Devara, why don't we start with you? What advice do you have for other clinicians having similar conversations with their patients and their patients families? What would you like them to know about how this specific case was handled and the outcome?

Dr Dolly Devara: So, it's not as much advice, but I'm going to share with everyone the strengths we had in having this area of services at our disposal. We all know that there's no real equity in distribution of services, whether it's across regions or in different parts of the world. At Marianjoy, we are very fortunate to have all these services at hand, the neuropsychological aspect; having Dr. Larson, Dr. Hoskins, the spiritual care. It's not just, handling the grief, but also showing them hope.

So, I think what we want to share here is it's about treating the patient in a very wholesome way. It's not just about the diagnosis, it's not about the numbers, it's not about the lab values, but treating them as a person, a wholesome person about what their needs are, what we anticipate in the future, going forward, leading their lives. It's always about listening to patients, and then taking them, walking them through that course. I wish Dr. Larson would explain more about his failure of imagination that he so well describes during his approach handling these difficult situations.

Dr Eric Larson: I think that really what the patients are presented with is they need some time to catch up to the events that have overtaken them. Earlier, Dr. Devara, you mentioned that the task of the family was to wrap their mind around what has happened. And the thing that is very valuable for the patients and the families to come to an experienced hospital like Marianjoy, is that this is not our first rodeo. We have dealt with these situations literally hundreds, in some cases thousands, of times. We know what the patients can expect and we can coach them through that although this looks bad, it gets better. We can actually help them begin to imagine to create a picture in their mind of what's going to come and what kinds of sources of happiness they can still find.

The case that we've been talking about, I think one of the things that was really tough for this guy is the prospect of not being able to take food by mouth. He had developed dysphagia and was having a tough time with swallowing, and was coming from a family of good cooks. I think it was heartbreaking for him to think about not being able to take food by mouth ever again. He was being fed through a tube, and it was devastating the thought that he couldn't take food by mouth. Then through the hard work of our speech therapists, he began to develop the ability to swallow safely and even pureed food, which to the same patient prior to onset, might have just seemed completely ridiculous, the thought he'd have to go back to taking baby food again, he loved it. It was so wonderful for him to finally have that taste again and as he was graduating to a more normal diet, he'd found a new thrill in things that he used to take for granted. He didn't even know that he would be able to get back to those things when he first arrived. But gradually through hard work, he regained some of those abilities and he had to ask us, "What is it that I can expect down the road?" And our team was able to come alongside him and tell him, number one, first, you can expect further recovery. Number two, the residual disability that you're going to face going on in your life is tolerable. It is, in fact, possible to find real joy in overcoming difficult circumstances and continuing to be around the people that you care about most. If you're focusing just on the technical aspects of your recovery, on how many steps are you making, then the fact that you're not able to walk as far as you used to, the fact that the food is not going down the right way. And so, you're not getting as much to eat by mouth as you used to is devastating and overwhelming. But if you can go ahead and recognize, "There's better things to come and that even when I'm faced with ongoing limitations, I will still find satisfaction in my life," then you can keep going and you surprise yourself. You actually learn that you're capable of doing things you didn't know that you're capable of doing, and you find that there's other sources of happiness beyond where you thought they were at first. It required a team that has been there before and that knows how to talk

about these things,

Melanie Cole, MS: Dr. Hoskins, I would like the last word to be to you. I'd like you to summarize what we've discussed here in this complex case today. It's so interesting, and what an interesting episode this is. Please wrap it up for us, Dr. Hoskins, what you would like the key takeaways to be here.

Dr Arnold Hoskins: One of the takeaways that I would like our audience to recognize is that our mission at Marianjoy is patients first, and that should be the mission of every hospital. And that mission should center on a patient's plan of care, and I'm sure that every hospital has a plan of care for their patients. But I believe one of the critical components that's missing from the plan of care is to involve every discipline possible into the plan of care. And what makes our plan of care so successful at Marianjoy is that we have an interdisciplinary approach to providing patient care.

And when a patient and a family's patient sees that we have all of these experts, we have the doctors, the nurses, the therapists, the spiritual care, the psychologists, and when they see that we have all of these experts that are teamed together to provide care of the patient, that gives a level of confidence and hope that they need in this critical time. And so, I would encourage any facility to look at their approach to their plan of care, to see how they can change that plan of care and approach to the plan of care to provide the best care they can to the patients, to our community, to our families.

Melanie Cole, MS: Thank you all so much for joining us. Thank you for joining us today and sharing that comprehensive, compassionate approach and this specific case study. To refer your patient or for more information, please visit our website at breakthroughsforphysicians.nm.org/rehabilitation to get connected with one of our providers.

That concludes this episode of Better Edge, a Northwestern Medicine podcast for physicians. I'm Melanie Cole. Thanks so much for joining us today.