(gentle piano music)
>> There are 39,000 women who die every year of
metastatic breast cancer.
Less than 100 have the opportunity to come to a
metastatic breast cancer patient retreat.
Every single women, however, deserves the opportunity to
attend one of these three-day, two-night events
to help prepare them for what's going to lie ahead.
I am Lillie Shockney, I'm the director of the
Breast Center at Johns Hopkins.
I also am the director for the Cancer Survivorship Programs
also at Hopkins for all types of individuals no matter
what type of cancer that they have.
I'm a 26 year breast cancer survivor.
I always say to myself, "there with the grace of God, go I."
Because I'm very, very aware that I could be sitting
where you're sitting. Certainly.
>> It's extremely important for other facilities to engage
the family and engage the caregiver at the end of life
for patients. And it happens very seldom.
>> She's always been strong. I wish I knew more to help her.
>> The primary goal of the retreat is to prepare the patient
and their loved one for what lies ahead
which includes, end of life.
Often times, what is going to lie ahead in
planning end of life is not discussed by their
medical oncologist.
There isn't a good comfort zone for that doctor
to engage in what really is a serious conversation
that that patient deserves to hear and participate in.
>> Many of these patients suffer terribly, spiritually and
emotionally at the end of life. And, it is extremely
difficult for the physicians to engage because they're
moving so fast. And Lillie fills that gap.
>> The ideal time for an oncologist or oncology nurse or
nurse advocator, to refer a patient for one of these
metastatic retreats is when the patient has gone through
several lines of therapy
and these treatments have not worked.
>> There's so much more to treating these patients than just
the chemotherapy and the radiation therapy.
>> And maybe we're just, since we've been on this journey,
together for it's gonna be 10 years, you look at
things differently. And I remember when we sat in your
seats. Just hungry for information.
>> The value is tremendous from an educational perspective
and tremendous from a research perspective.
These retreats offer us a huge amount of material from a
research perspective from which to develop our palliative
care programs, our hospice programs, our nurse navigator
programs. Tremendously, tremendously valuable to us.
>> The primary goal of the Metastatic Breast Cancer Retreats
is not just preparing them for end of life, it's also seeing
what their relationships look like.
How can we help them communicate better with their family
and also with the oncology team taking care of them?
Are they in pain that is going unaddressed?
Have they ever heard of palliative care?
Do they have, maybe, misgivings about hospice?
And when that's supposed to happen and why?
By engaging patients in hospice sooner,
rather than maintaining them on new, more toxic drugs,
they live longer and with better quality of life.
That should be our goal.
>> What we've seen at these retreats with patients coming in
a lot of them haven't even heard of
the term "palliative care."
So they don't necessarily know what it is,
know when to ask for it.
>> I didn't call in palliative care because I didn't
know what it was. It was ordered, suggested to me.
>> Tyler: If they learn about palliative care and getting
palliative care involved early, I think that they can
enjoy a much better life for a longer period of time.
>> I am always worried for patients about pain and
suffering, and that's why I like to
talk about palliative care.
I think it's so important in that
it should be part of your care now.
It shouldn't be this, in the nth hour kind of a thing.
It's not intended for that.
But it has developed a misconception, unfortunately.
>> Lillie structured it in a way that a healthcare system
does not need to reinvent the wheel.
The entire product is there. There is guided instructions.
It's evidence based. It's data driven.
>> The lessons that are taught at this retreat from other
patients, other caregivers, and the professionals that
are at the retreat, are invaluable.
I think they will provide patients with a lot of knowledge.
>> To have empathy for one another, to feel very comfortable
in a safe environment to ask questions that most women
are afraid to even ask their caregiver, their physician,
It's an opportunity to learn how to have a voice if you
want to have a voice.
But it also to the depths of: how to have a good death.
And, why not talk about that?
And where better, than to be with your peers
and have that opportunity?
>> These patients feel very isolated and alone.
It is a very unique situation to have a life without
a future.
>> Elaine had been diagnosed again with metastatic cancer
it was in her lungs and in her spine.
We attended the Metastatic Breast Cancer Couples Retreat
about three and a half years ago.
>> Once the patients understand that their cancer isn't
curable, they go through a myriad of emotions that they
really find it difficult to express.
Many times because they're being brave for their family.
And sometimes because they can't find the words.
>> I would recommend anybody that is going through this
to get help from someone.
To go to a retreat. To find somebody to help them guide
through. Because it's so confusing.
>> A retreat like this allows them to see
that they're not alone
and allows them to find a voice and express what's going on
because they're actually being asked what's going on.
>> Finally somebody's cared about your feelings,
your spouse's feelings.
Trying to help you deal with the mental load
that you're under.
>> To die over a period of years is really, really difficult.
And what we want to do, is help these patients live during
that period of time. Not feel like they're dying.
>> What do you think? Hope?
What are you hoping for?
Tell me what your life goals were before you found out
you had metastatic disease.
I want to see if they're achievable based on the length
of time they are in your future.
But also, can we fulfill those goals,
those hopes in an alternative way?
>> However I die
If I'm blessed to see it coming, that I'll just know in
my heart that the life that I've lived has represented
something that's gonna carry.
That there are lessons that I'll carry
to the people that I love. And even people I don't know.
>> I used to say I wanted a cure, of course. I want a cure
for all of us.
When you turn off a switch and it doesn't exist and
we can tell our daughters
and our...
and our granddaughters that
there was a disease called cancer.
But if it doesn't happen in my lifetime,
I still hope for it.
I have a confident expectation it's gonna happen.
But, for me, just like, abundant life to the full.
>> I just don't want my daughter to grow without me.
I don't want her to have a wedding
where she doesn't have her mom.
>> Another issue, particularly for those who have children,
is: I won't be here to raise my children.
I won't be here to instill my values in them
in letting them know how much I love them.
In having the joy of walking down the aisle and me
witnessing that.
So, a solution, though not identically the same, but has
worked, I find, very well.
Is providing those patients a wide selection of
cards to select for their children for the milestones
those kids are gonna reach in the future after she's gone.
What do you want to tell your child on that day?
And, we might just say, "oh I'm so happy for you,
today you're getting married."
Where as she's writing down: "This is what I hope for you
in your marriage. This is the kind of person I hope you
selected for yourself. And here's some marital advice."
So, they might be doing a better job then those of us
among the living are.
>> Each institution in planning a retreat has the opportunity
to receive a program planning guide that I've written.
It's 164 pages. Soup to nuts: how to do one of these events.
'Cause I thought, the first thing we need to make sure of
is that people aren't trying to reinvent the wheel.
That takes a lot of energy and a lot of time
and a lot of money.
I find it ideal to have two nurse navigators there.
At our particular retreats.
I also have a lead breast cancer survivor volunteer
who's worked with me for a very long time
in a volunteer role.
She herself also being a breast cancer survivor.
We always have a medical oncologist come in
for an hour to an hour and half on Saturday evening
to address questions that patients may have.
A yoga instructor who is certified in yoga,
including oncology yoga.
Reiki and massage therapists who are
certified in oncology therapy.
We also find quite valuable to have there.
And it just isn't for the patient, we also want the
individual that's accompanied them to also have these
same experiences.
A cancer center or breast center can set up a very similar
program first by connecting up with me
and I can email them how to go about getting
the Program Planning Guide.
>> The healthcare industry needs to step up and take
responsibility and recognize if they really want to treat
the patient and improve the quality
of the individual's life,
it can't just be a medical doctor appointment.
It can't just be a CT.
It can't be a blood test.
Hospital administrators need to recognize that there's
an even greater need to integrate these types of retreats
into their healthcare systems.
>> Lillie: For more information about these retreats,
please email me, Lillie Shockney, at SHOCKLI@JHMI.EDU.
(gentle piano music)