Narrator: Coming up on Mayo Clinic Q&A,
Jennifer Larson LaRue: Many people think that hospice is a
last resort. But in fact, hospice can provide so much care
and comfort in all aspects of the end-of-life experience for
both the patient and the family, so that it helps that very
difficult, painful time go more smoothly.
Narrator: Hospice Care is a special kind of care that
focuses on the quality of life for people who are experiencing
a life-limiting illness and their caregivers. Today we'll
meet a mother who lost her daughter to a rare disease, and
how hospice helped her and her family through that very
difficult time.
Lynn Evenson: To keep Ashley's memory alive, I want to tell her
story. And I want to make it open to people to understand and
learn what hospice is really about, and how he can make a big
difference, not just for the patient, but for the caregiver
as well.
Dr. Halena Gazelka: Welcome, everyone to Mayo Clinic Q&A. I'm
Dr. Halena Gazelka. November is National Hospice and Palliative
Care Month, a time to recognize the important work these
programs do to help patients and their families when a cure is
not possible. Today, we have a great program for you. We have
the story of one family's journey through illness, and
their wish to help educate others about the advantages of
hospice care. Joining us to share her daughter's story, is
Lynn Evenson. And also with us today to discuss hospice care is
Mayo Clinic psychotherapist Jennifer Larson LaRue. Welcome
to the program, ladies.
Lynn Evenson: Thank you.
Jennifer Larson LaRue: Thank you. Good to be here.
Dr. Halena Gazelka: Lynn, how kind of you to come on today and
share with us your daughter's story. Thank you for being here.
Lynn Evenson: Yeah, it's a pleasure. I'm really excited
about linking Ashley to something that I felt was really
important in her medical care.
Dr. Halena Gazelka: Wonderful. Jennifer, could we start with
you, and first before we start off today, define what is
hospice and what is palliative care and how are they different?
Jennifer Larson LaRue: Well, Dr. Gazelka if we think of a
trajectory of care with life-threatening illness,
palliative care can be involved at any point to help with
overall quality of life, navigating through the many
difficult and often confusing decisions and situations that
arise with such an illness. The goal of palliative care is to
provide the best possible care, of course, both tailored to a
specific patient circumstances and situation. Palliative care
can help a lot with pain management, symptom management,
social services, and spiritual care issues, for example. And
hospice on the other hand, comes into play more when there is a
more limited time of life expectancy, and the focus has
shifted from curing the overall illness or issue to managing the
symptoms and circumstances at the end of life.
Dr. Halena Gazelka: Well, you know, Jennifer that I have a
passion for this topic because I am a palliative medicine
physician, and I've served as one of our hospice medical
directors for Mayo Clinic. So, I believe firmly in the power of
palliative medicine and hospice as well.
Jennifer Larson LaRue: Absolutely.
Dr. Halena Gazelka: Lynn, thank you for being here. Again, I'm
so sorry for your loss. Would you tell us a little bit about
Ashley and her journey?
Lynn Evenson: Sure. Well, Ashley was born prematurely in 1987,
February. There were a lot of difficulties with the pregnancy.
And so, she was a preemie. And we were seen at University of
Minnesota for her illness. We moved to Chicago after that. And
she just wasn't catching up like preemies normally would. And so,
she developed an ear infection when she was about
14-months-old, and she got dehydrated and sick. And so, we
ended up going to a major university hospital down by
Chicago there. And the doctors couldn't really figure out what
was going on. She was only in the fifth percentile at 14
months. So, she was pretty small. So, we had all these
kinds of specialists come in and a neurologist came in and he
looked at her and he said, I know what she has, it looks like
she has Cockayne syndrome. And then he left the room, and my
husband and I just kind of looked at each other and we
ended up actually going down to the University Library to figure
out what it was. Then we had to have a biopsy done to confirm
the diagnosis. And that came back six months later as
positive for Cockayne syndrome. So, Ashley developed somewhat
normally as a child, but her body was aging prematurely. So,
we went through a lot of things with her vision, with her bone
density, osteoporosis, things like that, that normally what
you would see in the elderly. She lived at home with us
through school actually. And when she was 18, and she stayed
three more years in the school until 21, she wanted to try
living on her own. So, then we put her in assisted living
because I felt that I couldn't give her the socialization and
everything she needed once she was out of school. She held her
own. I mean, we had hospital visits and lots of specialist
visits and everything because obviously it's a rare syndrome
that she had. And then she started going downhill in about,
I don't know, when she was about 26-27. She started losing her
mobility. She had to go to a walker, then to a wheelchair.
And then in May of 2018, she developed pneumonia, and it was
found at that time, after she'd been in critical care for 10
days, that she had significant lung disease. They didn't know
if it was a form of genetic emphysema or they were calling
it COPD, they weren't sure. But she was then on four liters of
oxygen 24/7 after that continuously,
Dr. Halena Gazelka: Lynn, could you tell us a little bit about
how Ashley came to be enrolled in hospice and what kind of
services she received. What was that extreme like for all of
you?
Lynn Evenson: She had developed pneumonia in 2018, May of 2018.
And she ended up in critical care at Sacred Heart Hospital in
Eau Claire, and she was in there for 10 days. At that time, we
were told that she had a significant lung disease, which
nobody knew how, where developed or anything like that. So, she
was put on oxygen, and she was on four liters of oxygen
continuously. Then in February of 2019, she developed pneumonia
again, and we were back in the hospital over in Luther in Eau
Claire. And she was in there for five days on oxygen. And at
that point, we started to bump up her oxygen a little bit. July
of 2019, she started really having a lot of issues with
breathing, any exertion and stuff. End of July, we had to
put her in the hospital because her saturations were running so
low with any activity she couldn't breathe. So, she was in
the hospital in Menominee for five days. That's when we were
told that her lung disease was so significant that there wasn't
really anything they could do for her. Basically, the doctor
said she was actively dying. And they said to us, well you know,
we can't do anything for her here. What do you want to do? Do
you want to leave her here? Do you want to take her home? Do
you want her to go back to her apartment? And I asked her, and
she said she wanted to go back to her apartment. And so, we set
up hospice with Mayo, and they got everything together for us,
like in 24 hours, her bed, you know, all the equipment she
needed in her apartment. When she left the hospital she was on
15 liters of oxygen. And no portable oxygen generator does
15 liters. So, the most we could get was a 10 liter one. So, that
was kind of hard. But she lasted two weeks on that. But it was
two weeks of hospice. And, you know, after going through the
whole thing, I thought it would have been nice if it would have
been six months of hospice for her. Because I think her quality
of life would have been better, and it would have been less
stress on me. And my whole, I started thinking about it, and I
thought, you know, nobody really said to me, you know, let's see
if hospice can come in and help you as well as Ashley. And I
thought, yeah, that would have made a big difference. So, you
know, my whole point behind this is I don't think that education
is out there for the patients as well as medical staff. I don't
think a lot of doctors think of hospice as a quality of life
care treatment versus a last resort type treatment. And so,
I thought, you know, to keep Ashley's memory alive, I want to
tell her story. And I want to make it open to people to
understand and learn what hospice is really about, and how
it can make a big difference. You know, it's not just for the
patient, but for the caregiver as well, because I believe it
would have been so helpful for me if we would have known in
February that she should have been on hospice versus July in
2019.
Dr. Halena Gazelka: Can you tell us a little bit about the
services that Mayo Clinic Hospice Care offers?
Jennifer Larson LaRue: Sure. I should say how long do you have
to answer that question, but Mayo Clinic Hospice Care offers
care such as skilled nursing, aide visits to help with
activities of daily living, chaplain visits and social work
visits. Some of the Mayo Hospice agencies also provide
complementary therapies such as music therapy and massage
therapy. All of the Mayo Hospice agencies also provide volunteers
to help with a wide variety of things that the patient or
family may need or want. Bereavement care is also offered
to families after a patient dies. And that's in place for
roughly a year after that. I will add too that hospice is a
Medicare benefit that also provides medical equipment and
medications that will keep the patient comfortable at the
end-of-life. It really is holistic patient and family
centered care provided in a place where a person feels most
comfortable in their own home.
Dr. Halena Gazelka: I think, Jennifer, that's one of the
brilliant concepts of hospice is that it ministers to the entire
individual, and to their family as well. And coming from the
field of pain medicine, where I know so much is affected by the
physical, that I love that concept. Tell us about why early
referral to hospice is important for individuals.
Jennifer Larson LaRue: I think an early referral to hospice is
really important because of that coordinated holistic care that's
provided. Ironically enough, studies have shown that people
live a little longer when palliative and hospice care are
involved, mainly because of that coordinated, holistic approach.
I think many people think that hospice is a last resort. You've
probably heard that phrase used before as well. But in fact,
hospice can provide so much care and comfort in all aspects of
the end of life experience for both the patient and the family
so that it helps that very difficult, painful time go more
smoothly, I think.
Dr. Halena Gazelka: Jennifer, if there are listeners today who
are interested in more information about hospice, how
might they find that?
Jennifer Larson LaRue: I would say the best way that people can
connect with hospice care, Mayo Clinic Hospice Care, for
example, is across the midwest. And the best way to find
information would be to go to either to the main Mayo Clinic
website, www.mayoclinic.org, or the Mayo Clinic Health System
website for those listeners in Wisconsin or other regions
outside of Rochester, SE Minnesota. Or just check with
your primary care provider for more information too. They
should be able to direct you to the appropriate agency that way
as well.
Dr. Halena Gazelka: What else do you want our listeners to know
about hospice care, Lynn?
Lynn Evenson: You know, I really love the fact that I could get a
hold of anybody 24/7. That was, as Ashley's disease progressed,
especially with her lungs, and she was in an assisted living
facility, and she wanted to go back there after she got to the
hospital last time. And the staff were great. But I had to
train the staff what to do for her and with her. When she was
put on oxygen, I was taught how to use the oxygen generators, to
take her SATs, everything like that. And then I had to in turn,
had to go and train them. And there were times in that 15
months that I would get calls in the middle of the night, I would
get in the car, I would drive over there, because they didn't
know what to do for her. And I think, like I said, if I had
known that the hospice was an option, I certainly would have
felt better knowing that there was somebody I could call
immediately who could come and take care of her. And I think a
lot of people don't understand that that's available for the
caregivers as well as the patient. And I don't know for
sure, but I wonder if a lot of medical staff don't really
understand that as well.
Dr. Halena Gazelka: Good point. Probably not.
Lynn Evenson: Yeah, and I thin medical staff maybe need to h
ar more about patient stor es and how hospice has help
d them, and, you know, impr ve their quality of life at the
nd, where it's not so much abou , you know, trying to catch up w
th care, but making it comf rtable care for people.
Dr. Halena Gazelka: I love the point that you made about
24-hour availability, because so often individuals who are very
ill, and they're not on hospice, their families don't know what
to do other than call the emergency room or call 911 and
summon an ambulance. And a lot of times people spend time in
hospitals that they prefer not to if they were given the
choice.
Lynn Evenson: Right. Yeah. And I don't, like I said Ashley wanted
to be in her own apartment.
Dr. Halena Gazelka: Yes.
Lynn Evenson: It did get near the end there, it was almost two
weeks before she passed, and the social worker had said to me,
because I decided to give her her medications every two hours.
She was on lorazepam and morphine to help her breathing
because she just couldn't breathe. And at the two week
point the social worker said, you know, we need to think about
maybe putting her back in the hospital. And I agreed with her,
you know, and we didn't have to, it didn't end that way. But, you
know, somebody's kind of guiding me and saying you don't, it's
okay, you know?
Dr. Halena Gazelka: Yeah.
Lynn Evenson: And so, it's nice to have somebody to have your
back. I guess that's the best way to put it. Because a lot of
times you don't know if you're making the right decision.
Because obviously, I've 32 years of medical background with
Ashley, but I'm not a doctor.
Dr. Halena Gazelka: Well, it sounds like you took care of her
beautifully, Lynn. Thank you or sharing with us. Jennifer,
ny last words for our isteners?
Jennifer Larson LaRue: I just wanted to reiterate that those
early referrals to hospice care, just as Lynn, you know, very
eloquently has shown us, those early referrals to hospice are
so, so important for that reason to care for the patients and the
families both the best way that they can.
Dr. Halena Gazelka: I couldn't have said that better myself.
Wonderful. Thank you for being here today. Our thanks to Lynn
Evenson for being here today to share her daughter Ashley's
story. And to Mayo Clinic psychotherapist, Jennifer Larson
LaRue, who works in hospice for joining us to talk about hospice
care today. I hope that you learned something I know that I
did. We wish each have a wonderful day.
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