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.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials