Editorial
Addressing the Needs of Patients with Metastatic Breast Cancer
Shockney LD1*
University Distinguished Service Professor of Breast Cancer, Johns Hopkins Hospital, USA
*Corresponding author: Lillie D. Shockney, University Distinguished Service Professor of Breast Cancer, Johns Hopkins Hospital, 600 N Wolfe Street, Carnegie 683, Baltimore, MD 21287, USA
Published: 07 May, 2016
Cite this article as: Shockney LD. Addressing the Needs of Patients with Metastatic Breast Cancer.
Clin Surg. 2016; 1: 1009.
Editorial
Though we know that more and more women are surviving breast cancer today, there continue
to be approximately 39,000 who still succumb to this disease annually [1]. These patients were
looking forward to a long life ahead of them filled with hopes and dreams for themselves and their
families. This is the “space” I clinically work in and study. I do not conduct laboratory research or
clinical trials comparing various chemotherapy regimens but instead am focused on the quality of
life preservation and helping patients experience a good death.
For the last decade I have been conducting retreats for metastatic breast cancer patients semiannually.
One is for patients to bring with them their spouse or partner, known as the metastatic
breast cancer couples retreat; the other is for patients not in a relationship and they bring a female
caregiver who is commonly a mother, sister, daughter or even a best friend. These retreats are held
at a spiritual center off campus from the Johns Hopkins Medical Institution and last for three days
and two nights. They are free to attend and are funded by grants and through philanthropy. Our first
one was nearly a decade ago. Though patients and their loved ones attend primarily for the purpose
of networking with others who are in the same situation, they also have the opportunity to discuss
their fears and hopes, and by the end of the third day have a working end of life plan, which they
never imagined would be one of the outcomes of such a program. Pre and post retreat surveys are
conducted with one of the most impactful questions being—I am fearful of my future. It is rare that
a patient scores below the 50th percentile with the top of the scale being extremely fearful, however
upon leaving and when surveyed again three months later (for those still surviving), it is unusual
to see anyone above the 50th percentage mark. We believe this reaffirms that talking through scary
issues such as fear of being in intractable pain, dying without dignity preserved, feeling no sense of a
time line for their future, worrying about who will raise their young children and keep her memory
alive as well as instill their mother’s values in them as they grow, have been adequately addressed so
fear is converted into knowledge and with knowledge there is patient empowerment.
Palliative care is a focused topic of discussion because it is misunderstood. It continues to be
coupled with hospice care when it is designed and intended to be provided long before hospice
is needed [2]. Time is devoted specifically to discussing what patients and their family members
believe the purpose of palliative care is and when it should be implemented. So even if their doctor
isn’t offering it a patient can be proactive for herself and request a consultation with the palliative
care team. Knowing they are there for symptom management, are comfortable knowing that it is
not just for end of life pain management, and having another member of the team appreciate the
importance of quality of life preservation brings on a look of relief and content sighs. Even knowing
that pain control doesn’t always mean heavy narcotic usage is a surprise.
Hospice care is also discussed and begins usually with a round robin discussion of what people
believe it is for--- and most believe it is for those who are actively dying and no more treatments
can be given so they are taken home or to a hospice facility where they are given heavy doses of
narcotics and left alone to sleep until they pass away. Learning that hospice is intended to be given
for six months nearly always amazes the attendees. However they are actually providing us their
experience with hospice based on family members or friends who have received hospice care in the
past, and died just days later.
A profound session occurs on day 2 of the couples retreat when the patients and their spouses/
partners are separated into different rooms and candid discussions take place. The husbands have
been trying to hide their emotions until then and finally in the privacy of being with a facilitator and
just those who are in the same boat, someone soon to become a widower, they are able to let go.
They cry, they express anger, talk about their fears, and are frustrated they cannot “fix” their illness.
They want time lines, what symptoms to watch for that the disease is
progressing, advice how to talk with young children and teens, and
how to cope with their own sadness [3]. And rather than say to their
wives again, “you can’t die. I can’t raise our children without you”,
they learn to say, “I can’t imagine our lives going on without you but
I know they will. I will make sure that our children always know how
much their mother loved and still loves them, instilling your values
in them, and remind them of your hopes for their futures as they
reach each milestone of their lives. I will recruit and accept help from
others like your sister or mother when it is time to discuss things like
menstrual periods that dads are clueless about. I love you.”
We have learned the implications of what can happen when
communication doesn’t go as expected or assumed. This is not a time
for silence but a time for more communication and clarity as well as
helping to ensure everyone is on the same page. That means the goals
of treatment need to be based on the patient’s goals—not the doctor’s
and not the family members’. Because treatment for treatment sake
is bad care.
Laughter should be part of the patient’s treatment. It is an effective
stress reliever. Though dark humor may catch some friends or family
members off guard when used by the patient, it still has its place and
must be accepted rather than suppressed. We conduct the “Almost
Newly Wed Game” on evening 2 that has virtually everyone rolling
in their seats, no matter how will they are. For 2 hours no one has
cancer.
Research currently happening at a national level is discussed by a
Hopkins researcher, not for the purpose of providing hope that a cure
is close at hand but instead to provide comfort that future generations
will see an end to this disease. Clinical trials are discussed by a Hopkins
medical oncologist and it is not unusual to have a retreat attendee to
choose to pursue enrollment in a clinical trial that is presented.
Spirituality is also discussed, though religion per se is not
brought up. Families of all faiths attend these retreats and it has been
heartwarming to see that it doesn’t matter if they are catholic, Jewish,
mormom, or non-denominational, everything agrees that spirituality
is important to have because of its connection to hope.
The hardest part of orchestrating such events is not the creation of
an agenda, because prior patients and family members have informed
us during focus group discussions what they want to hear and
experience. The hardest thing to tackle was finding the right venue for
holding such an event. It requires open spaces, serene environment,
an atmosphere of peace and of feeling safe to freely discuss anything.
Case Study – Rachel
A 30 year old woman with stage 4 breast cancer attended a
metastatic couples retreat with her husband, age 31. She was diagnosed
from the onset with metastatic disease. They have 2 sons, who were
ages 1 and 2 at the time of her diagnosis. She had been undergoing
active treatment for metastatic disease to the bones and liver for more
than a year. When I asked her what her goals of treatment were she
told me she had two goals---1) to receive treatment until her last
breath so that her mother and husband could tell her children later
in life that she fought to be with them; 2) that she wanted her boys to
remember her and be old enough to remember her without having to
always look at photos or be told stories about her by others. Though
both goals sounded rational they in fact were not. If she received
aggressive toxic treatment up until her last breath she would have
likely less time with her children due to her needing to be hospitalized
and die sooner. If, however, she focused on quality of life preservation
and spent this time at home as much as possible rather than being
chronically readmitted to the hospital following 3rd line, 4th line,
5th line therapies, she would have more quality time with her boys
creating memories that are everlasting [4]. So she changed her goals
by deleting #1 and embracing #2.
She also learned at the retreat the elements of what makes up a
good death experience. These include [5]:
Having purpose for living and feeling it was valued by at least oneother person
Leaving a legacy that is not related to leaving money
Dying in an environment of the patient’s own choosing
Being pain free
Giving forgiveness and receiving forgiveness
Feeling confident she will be thought of kindly after she is gone
Feeling a connection spiritually to a higher power
Having legal and medical affairs in order
Leaving no financial debt for the family to pay associated with the
patient’s cancer care
Such a list requires time to accomplish and cannot be done in a
week or two. And this should be our goals as clinicians—to orchestrate
a good death—to no longer say I am sorry because after all we knew
that the patient was eventually going to die. Instead we need to take
pride in orchestrating a good death.
This requires clearer and more effective communication, honesty,
asking the patient key questions such as: What are you hoping for?
What are you most worried about? What is important to you? What
gives you joy or gave you joy before you became sicker [6].
Now back to Rachel in our case study. She is still living at the time
of this editorial being written and is still making memories with her
boys who are 4 and 5 years of age. Her cancer spread to her brain two
years ago. Palliative care has provided her quality of life preservation,
which after all is what it is intended to do – preserving it or restoring
it. She knows her time is winding down and she is ready because she
created her end of life plan at the retreat, which over time she has fine
tuned. One of the elements in that end of life plan is having cards for
her boys as they grow up. Cards to open for every milestone of their
lives—birthdays, drivers’ licenses, communions, graduations, when
they wed, even when they have their own first born and become dads
themselves. Written in them are her words of wisdom, her love for
them, and her values she wants them to remember and hold steadfast.
She will still “be here” having her voice heard and her hopes for them
expressed. (These cards are provided as in kind donations from many
individuals as well as advocacy groups so the patients select and take
home these cards, as well as recordable children’s books for those with
very young children or women who won’t “be here” for a grandchild’s
birth. The baby will hear its grandmother’s voice as she reads stories
that are preserved to play for a lifetime).
For more information about the metastatic breast cancer retreats,
send an email to [email protected] . A Metastatic breast cancer retreat
program planning guide is available for free. Johns Hopkins has also
launched these retreats for metastatic colorectal, advanced pancreatic
and advanced gyn oncology patients and their spouses/partners. The
Johns Hopkins metastatic breast cancer retreats are not restricted to
only being offered to Johns Hopkins patients. If you have a patient
you believe would benefit, let us know. The retreat is free for patients
and their loved ones to attend. The patient and family member only
need to provide their own transportation.
You can also watch a short video clip at: https://www.youtube.
com/watch?v=Bg02G2a7uHo
References
- www.cancer.org accessed April 26, 2016.
- Center to Advance Palliative Care. Public opinion research on palliative care. www.capc.org accessed April 26, 2016.
- Leydon G, Boulton M, Moynihan C, Joes A, Mossman J, Boudioni M, et al. Cancer patients’ information needs and information seeking behavior: in depth interview study. Br Med J. 2000; 230: 909-913.
- Shockney L. Fulfilling hope: supporting the needs of patients with advanced cancers. Nova Science. NY. 2014.
- Steinhauser KE, Clipp E, McNeillu M, Christakis N, McIntyre LM, Tulsky JA. In search of a good death: observations of patients, families and providers. Ann Intern Med. 2000; 132: 825-832.
- Kaplowitz SA, Campo S, Chiu WT. Cancer patients‘ desire for communication of prognosis information. Health Commun. 2002; 14: 221-241.