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I'm Aware That I'm Rare: the phaware® podcast

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Laura Rhee, MD - phaware® interview 310

Feb 25, 2020

Dr. Laura Rhee is a senior associate consultant and instructor in medicine at Mayo Clinic in Rochester, Minnesota. Dr. Rhee is currently the co-director of the outpatient palliative medicine practice. She has an interest in sub-specialty palliative care and practice development. In this episode Dr. Rhee discusses the impact of palliative care in pulmonary hypertension.

Learn more about the Mayo Clinic Clinical Trial to Determine the Feasibility of a Wearable Health Monitor to Measure Stress in Family Caregivers.

My name is Laura Rhee. I'm a physician in palliative medicine at Mayo Clinic in Rochester, Minnesota. I serve as the co-director of our outpatient palliative practice. I just recently got involved with the pulmonary hypertension group here at Mayo, as they came to us with a research study that they wanted to do on their patients with advanced pulmonary hypertension.

We know that patients with advanced pulmonary hypertension often have a poor quality of life and has a profound impact on just their day-to-day life and their functionality, as well as their psychosocial health and emotional health. That is an aspect that palliative care really seeks to improve in these patients. The patients with advanced pulmonary hypertension may be randomized to see palliative care, and the ones that are, we're going to focus heavily on the physical impacts, the psychosocial, the spiritual impact of the disease upon their life and look for ways that we can improve their day-to-day life and overall quality of life.

A lot of people still think palliative medicine is hospice medicine and the two are actually quite distinct. Palliative care can be involved in a patient from the time of diagnosis of an advanced disease all through the end of life. We are trying to be involved earlier in the course of someone's disease, because we know that it's more beneficial. For example, a lot of our data comes from the cancer population and we have found that involving palliative care in patients with advanced cancer often leads to improved quality of life, improved emotional health and also they're finding improved survival. There's a lot of questions about why palliative care might improve survival, but nonetheless, that has been found. So now, the big question is, does palliative care involvement, like has been done in cancer, does that translate to other advanced diseases? Does palliative care involvement in pulmonary hypertension going to improve quality of life and even, perhaps, survival? So, that's the question this study seeks to answer.

Fortunately, we have a fair amount of leeway with this study, so they're going to assess patients at baseline, prior to meeting us, as far as their symptoms, and again, physical symptoms and emotional symptoms. Then, some patients will be randomized to come in and meet with palliative care. These same patients will then be reassessed for approximately a year to see how much benefit palliative care can make in their health.

Palliative medicine has actually [been] involved in a lot of patients that have advanced congestive heart failure. This population will be quite similar as far as symptoms and just the general impact that the disease has on someone's day-to-day life. Unfortunately, a lot of these patients do have a lot of psychosocial, emotional, and spiritual distress, and those are things that just, historically, have not really been addressed that frequently in these folks. But they have a huge impact on someone's quality of life. So, that's where I really see our niche in helping to treat these patients.

Most patients are very scared to meet us. And again, I think a lot of that goes back to the worries that we're here to talk about end of life only. While that is a piece of what we do, we do so much more than that. So, I try to help ease patients' fears very early on in our conversation, that my job is not to talk them in or out of treatments or to give them the news that their death is imminent. We're really here to try to help them live as best as they can for as long as they can.

So, we actually have a pediatric palliative care group here, as well, and they see patients all the way up to age roughly 18 to 21. We tend to see folks 21 and on. Again, this is a relatively new population for us that we have seen some patients with this disease. I think what we're seeing is patients tend to have a lot of distress with their physical symptoms. A lot of troubles with their breathing. Then, a lot of just general impact on their day-to-day life. A lot of people experience depression, worry, sadness, anxiety, and just continual losses over the things that they're no longer able to do on a day-to-day basis. They also tend to experience a lot of relationship distress. This presents, a lot of times, new roles for families that now someone has to take on the role of caregiver for the patients, and that can have a huge impact on work and finances and just family dynamics.

Additionally, we tend to see a lot of spiritual distress. A lot of patients may ask, "Why did this happen to me?" Some patients lose faith during this and others find faith quite a source of support. So, those are all things that we tend to talk through. The most recent patient that I did see, actually connected to this study, was exhibiting a lot of emotional symptoms and just was really having a hard time coping with her diagnosis and what that means for the future. She has a lot of worries about how her family will be able to adapt to their caregiving roles and a lot of frustration, certainly voiced on her behalf, as well as her family's behalf, with what's happening and the changes that they're experiencing. So, with her, but in particular, we were working on a lot of coping skills, and also, what we call prognostic awareness, making sure that the patient and her family are all very understanding of her disease and what the future might look like and how to best plan for that. We will be seeing this patient next month in follow up and my hope is that they've been able to work on some of those skills in the meantime. But again, those are ongoing things that we have to continue to build on to really help these patients come to terms with their diagnosis.

Caregiver distress is such a huge issue that we're facing, right now, and it's one that doesn't have a lot of good treatments or avenues to help caregivers. Being a caregiver can be a full time job, and, as I mentioned, it can impact someone's work status and finances, and we often forget just how stressful that role of being a caregiver can be. Some caregivers will express that they really lose themselves in their caregiving role, and so, we really want to try to support and encourage caregivers because we know that healthy and active caregivers are going to do a better job. They're going to take better care of the patients and they're going to take better care of themselves.

So, we are actively trying to work on coping skills, not just with the patient, but also with the caregivers. We talk about how to brainstorm ideas to give the caregivers some respite. How can they maintain a sense of self while still providing care for their patients? We do have a full time social worker in our outpatient palliative clinic and we rely heavily upon her for counseling and coping skills with caregivers.

I would just encourage any patients or family members of patients with advanced pulmonary hypertension to consider involving palliative care, either locally or coming to Mayo to be a part of this study. I do think that we're going to find that palliative care will provide additional benefit for these patients, in terms of their quality of life, and that's really a big measure when it comes to pulmonary hypertension. I am very hopeful that we're going to find very positive results from this study.

My name is Laura Rhee and I'm aware that I'm rare.

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