Several hundred

MSH professionals
attend a panel ISSUE 22 Spring 2017
discussion led by
veteran journalist Bill
Moyers ..................3

Creative Arts
Therapy program help
children cope with the

SMILE
loss of parents or
siblings who died on
KP6 ........7

Several PCU staff

members attend the
American Academy of
Hospice & Palliative
Medicine conference

Newsletter
in Arizona.7

Simply Make an Impression to Last an Eternity

The Wiener Family Palliative Care Unit

Annual Douglas West Endowed Memorial Lecture:

When Breath Becomes Air
By Sylvie Jacobs, RN, BSN, CHPN

What is the meaning of life?
This timeless question is what
led the late Dr. Paul Kalinithi to
follow his brilliant philosophy/
poet spirit into the rigors of
neurosurgical training. At the
time, he had no idea that he
would have to find lifes
meaning in the face of his own
death.
Paul was diagnosed with terminal
lung cancer. He, who died at 37,
went on to write a great, indelible
book, When Breath Becomes Air.
In his short memoir, Paul tells
how the life he had mapped out
evaporated into thin air. It offers
insight into how to live in the face
of death from the unique
perspective of a doctor/patient
who is also an accomplished
writer.
His wife Lucy, an internist, spoke
about how their experience
brought a deeper love and intensity
to their relationship. Paul and
Lucy had some advantages over
the average person who has to deal
with serious illness, dying and
death. They were both medical Paul, Lucy, and Elizabeth
doctors, had strong family support,
were well familiar with hospitals
and hospital culture and were both
spiritually mature. (Page 5)

Patient Spotlight: Getting to Know Eleanor Miller

By Morgan Meinel RN, BSN, CHPN

It is with great joy that I introduce to you Eleanor Miller, fondly known to staff and
her loved ones as Ellie. For a multitude of reasons, Ellie was chosen as this months
spotlight patient on the Palliative Care Unit at Mount Sinai Hospital, and it is truly an
honor to be able to share her story with you all. (Page 4)
Eleanor Miller
A Note from Maureen
For the past four years I have been writing a note for our PCU newsletter, and as I
write this one, it feels different than it ever has before. In July of 2013 Andrei died.
In July of 2016, my Marilyn died. I have spent lots of time these past weeks trying to
make sense of all of this. I am no wiser. I do agree that the pain of death is
excruciating. I now also know that the pain of their unrealized futures haunt me like a
dark covering. I miss them, and I miss what never will be. Marilyns loss has
brought me to the fringe of my life and my faith.

We are here again. We are at the beginning of a new year, with all of its promise of
hope, change, growth and anticipation. Our unit is small but mighty. It is mighty
because of the people who work on it. It is mighty because of you. You are growing
in your love for Palliative Care. It is evident. You are growing in your understanding
of our larger mission. You are growing in the grace and attention you extend to our
patients, their families and each other.

It is wonderful to be part of it. I will always be so grateful for the love you have shown me, and the charity of your
understanding over the last few months. Thank you. Wishing you and yours blessings in the New Year. Maureen

Memorial for Marilyn Elizabeth Baker

On February 15th, Margaret and John Ruttenberg renamed their philanthropic support of
the Creative Arts Therapy Program to Marilyn Elizabeth Baker, daughter of our PCU
Clinical Nurse Manager, Maureen Leahy.

On July 23, 2016, the Hertzberg Palliative Care Institute lost a beloved friend, Marilyn.
A day hasnt gone by without the thought of Marilyn by our team members. It is with
profound love and sorrow that they think of Marilyn
often. She was a friend to so many. She was bright,
Marilyn Elizabeth beautiful and generous. Marilyn shined brightly in
Baker the world and is missed beyond measure.

Marilyns death sent shock waves throughout our hospital as we continue to

grieve alongside Maureen, her mother, her family and her friends. While here in
New York, Marilyn participated in the Mount Sinais Annual Nurses Week and
befriended the Department of Nursing in only the way that she could. Members
of our Hertzberg Institute have long considered Marilyn part of the family a
rambunctious daughter, a high-spirited sister.
Coping with Loss: A Bioethical Perspective on End of Life Decisions
By Bette Kerr, EdD, Doula & Palliative Care Volunteer for 16 years

Listening intently, several hundred Mount Sinai professionals and community members attended a panel discussion
led by veteran journalist Bill Moyers.

Mr. Moyers interviewed three of Mount Sinais towering figures

in palliative medicine: Diane E. Meier, MD, Director of the
Center to Advance Palliative Care (CAPC) and founding
Director of our Palliative Care Program; Keren Osman, MD,
Hematologist and Oncologist in the Bone Marrow Transplant
Unit; and David Muller, MD, Dean for Medical Education and
co-founder of Visiting Doctors.
Bill, Diane, Keren, and David
Twenty years ago, for his pioneering television series On Our
Own Terms, Moyers contacted a remarkable path breaker, Dr.
Diane Meier, and with her guidance produced the segment A Different Kind of Care. Ten years later Moyers
followed up with Death and Dying. Segments from both programs were shown February 16, providing a
framework for Moyers exchanges with the panelists.

The television documentaries brought palliative care to the attention of a public unfamiliar with this medical
specialty. They humanized illness and took serious illness and dying out of dark corners to which they had been
relegated.

In nine years at a renowned medical school and in advanced training to be a geriatrician, Dr. Meier had not one
course, not even one lecture on pain management. When Dr. Meier and R. Sean Morrison, MD, now Director of
Sinais Palliative Care Program, were in medical school, there were no role models, no palliative care in the
curriculum. They later became pioneers in establishing foundations for palliative care training. Communication
skills can be taught. Doctors in training need to observe physicians skilled and comfortable in communicating
serious news, finding out what matters most to a patient, facilitating a family meeting, and introducing a bad
prognosis.

Trying to determine if seriously ill patients and their families are being truthful about what they prefer in crises and
risky medical situations such as bone marrow transplants, doctors need to use every listening tool they have,
stressed Dr. Osman. If patients are near end of life, do they want treatment? What kind of treatment? Are they
making informed choices? You need to fall in love a little with patient and family in order to perceive, to see
feelingly.

Always unafraid to tackle difficult issues, Moyers asked panelists how they respond if theres a patient they really
dont like. It happens, was the honest reply. Were human and were professionals. We have to acknowledge what
were feeling but recognize our responsibility to alleviate a patients suffering. Moyers also touched on the issue of
suicide at end of life. In filming his documentaries, he was invited into an Oregon home where a patient coping
with a prolonged death planned to take her own life. He marveled at how she, like all he interviewed, had a
wonderful sense of humor and allowed him into intimate situations. At the last moment this woman, like many
others, changed her mind. If people can be assured that, with palliative care, their pain will be relieved and that they
will be comfortable, they tend to choose to live. There is something about life that many want to cling to as long as
they can.

Dean Muller emphasized the vast cultural shift in the way medicine is now practiced. After the TV series, more
medical schools introduced palliative care. At Sinai, every medical student now spends a week on the palliative
care service and two weeks with Visiting Doctors, seeing elderly and frail patients. Today, 2/3 of larger hospitals
nationally have palliative care programs. Ninety-four per cent of the largest hospitals have palliative care teams.
Much has been accomplished, but we still have a long way to go.

In closing, our extraordinary Sinai panelists Drs. Meier, Osman, and Muller, together with Bill Moyers, shared
other ways they learn. In addition to medical training and role modeling, we need the arts and humanities. Doctors
need the courage to be vulnerable themselves, to dare to be funny, to share something personal if appropriate. They
learn from literature. A current favorite is Americanah, Chimamanda Ngozi Adichies novel of a woman who
migrates from Nigeria to the U.S. and returns to Nigeria. It embraces issues of identity as an immigrant and a
woman; race; internal conflicts; and many human dilemmas.

With his usual low-key humor, Mr. Moyers related a fairly recent experience. A major organization invited him to
speak about his documentaries and his work with bioethicists and palliative care physicians. But he dared not
mention the word death! Do we need a more cogent reminder that, as proud as we are of all our Sinai professionals
have accomplished, the road ahead is still a long one?

(From Page 1: Patient Spotlight: Eleanor Miller )

There is no doubt that whoever walked into Ellies room was immediately invited in with a smile and expression of
gratitude. Her room was often a place of peace and sanctuary for anyone who had the good fortune of entering it.
Ellie was always smiling. Balloons, cards, books, paintings, and an array of beautiful flowers surrounded her in her
hospital room. Ellie was always kind enough to invite the staff members of the Palliative Care Unit to sit down with
her and spend quality time, and they never left her room quite the same.

Ellie would share with us many valuable life lessons and stories. One of my favorites is an experience she had at
Mount Sinai, while visiting her husband Bob. As she was purchasing coffee for herself and family, a Starbucks
employee immediately recognized her and told her that she was his favorite customer (which of course is no
surprise to us!). When Ellie asked why, the man replied, Because you spoke to me. As Ellie was recounting this
story, she had tears in her eyes. She was grateful for the mans kind words and reflected on how essential it for us to
just simply be kind to one another. Ellie had a way of positively influencing those around her by reflecting on just
how precious life is.

Ellie often spoke lovingly of her family and how incredibly special
they are to her. When asked what keeps Ellie inspired and positive
each day, she responded with, The love that I see surrounding me.
The love of my daughter, love of my son, love of my husband, and love
of my grandchildren. I am overwhelmed by the generosity and utmost
care they have showed me. It is so meaningful. If you just permit
yourself to be open, you can allow yourself to be whatever you want
to beif you just give yourself a chance.

Ellie shared with me that she and her husband, Bob, were in love at
first sight. The first night that she met him, she shared with her Mom
that she had met the most wonderful man. She describes her
husband as a very good man, with whom she feels very fortunate to
share a life.

Ellies son, Christopher, spoke of how devoted and loyal Ellie is to Bob. Ellie has been an incredible support to
Bob, through his own health challenges in recent years, often sitting at his bedside night and day to keep him
company. Ellie and Bobs marriage has been one of devotion, unconditional love, and support. Each morning on
the Palliative Care Unit, Ellie would call Bob to tell him she loved him and wish him a good day.
Ellie then reflected on what a positive and powerful influence her
parents have had on the way she lives her life. Coming from a very
Fun Facts about Ellie
modest upbringing, Ellies father Adolf and mother Alice, managed to
make do with whatever they had. Although they did not have much Occupation: Teacher of early
material wealth, they had hearts of gold and would always extend childhood education
generosity and kindness to others. Ellie expressed that her parents
have been a strong inspiration to her and for all of her life she has tried Important Family and Friends:
Husband Bob, Daughter Allison, Son
to live up to the same standard of being kind and warm-hearted to
Christopher, Son-in-law Philip, and
others, helping in whatever ways she could. She describes her parents Grandsons Alexander, Christopher,
as selfless and loyal, qualities that she, too, very evidently embodies. Tyee, and Nicholas.

Perhaps having such beautiful role models as parents was one of the Favorite Book: The Good Earth by
Pearl S. Buck. Ellie loves its message
reasons Ellie decided to become an early education teacher. Ellie
of elevating life and the spirit, pushing
recognized from the very beginning of her career that so many of the forward no matter the difficulty and its
children she taught had special needs, and throughout her life she beautiful reflections on family.
dedicated much time and devotion to creating an environment for her
students that was equally as supportive as it was empowering, loving Favorite Music: Contemporary
and caring. Anyone can tell immediately that Ellie has an essence
Favorite Colors: Pink and blue
about her that is nurturing, caring, and inspiring. Ellie also spoke of
how much she loved working as a teacher in NYC, where she had the Activities and Hobbies: Spending and
opportunity to meet people of many different cultures. She loved sharing time with family.
merging and sharing different viewpoints, which was an avenue of
Achievements of which she is proud:
give and take learning and enriching each others lives through the
Being a wife, mother, and teacher.
unique differences of her and her students. Watching her children develop into
remarkable parents themselves. Passing
As our interview was coming to an end, I asked Ellie if it would be on her love and knowledge to her
possible for her to share one bit of wisdom that has guided her children and grandchildren that she
received from her own parents.
throughout her lifetime thus far. She responded with, Always hold
close your nearest and dearest family because the joy they give to you Things that cheer her up: Her
is the joy that you reflect back to them and each day that goes on, grandchildren and their sweet and
your life becomes more enhanced, more meaningful. Each and every charming ways.
one of us can certainly benefit and gain from Ellies wisdom and kind
heart.

With heartfelt gratitude to Ellie! You are a rare and precious gem.

(From Page 1: When Breath Becomes Air )

For example, one wisdom nugget shared by Lucy in this lecture was that fairness plays no role in illness or death.
Stuff happens and to waste precious time and energy angrily seeking justice is foolish. Lucy is guided by faith,
family, communication and intrapersonal exploration by way of mindfulness meditation. Paul and Lucys joint
decision to have a baby while he was dying was an examination into this process. When they decided to have a
baby, their love and consideration was clear. Lucys concern was that it would make Pauls dying even more
painful and his response was, Yes, and wouldnt that be great if it did. Pauls daughter, Elizabeth Acadia (Cady)
was 8 months old when he died March 2015.

When Breath Becomes Air helps us reflect on why we need to honor death
in order to make the most out of life; how communication can connect us;
what it is like to see our future dreams destroyed; why accepting reality can
lessen suffering; the burdens, responsibilities and privileges of caregiving;
the importance of the clinician-patient relationship and the patient
experience; how legacy projects can connect relationships which continue after death; and how self-care, humor,
interpersonal connection and time can help healing.

Lucy Kalanithi was a brilliant choice for this years Douglas West Memorial Lecture. This annual lecture honors
Douglas West and was created by his widow, Susan West, who serves as the co-chair of the Lilian and Benjamin
Hertzberg Palliative Care Institute Advisory Board along with Saskia Siderow. The Annual Douglas West Endowed
Memorial Lecture was also created to honor Dr. Diane E. Meier who cared for him compassionately and
holistically before formalized palliative care. Dr. Meier is Director of the Center to Advance Palliative Care
(CAPC), Vice-Chair for Public Policy and Professor of Geriatrics and Palliative Medicine. Catherine Gaisman is
Professor of Medical Ethics and was the founder and Director of the Hertzberg Palliative Care Institute from 1997-
2011 at Mount Sinai School of Medicine.

Both of these esteemed physicians teach us that there are many ways we can provide help during times of deepest
despair, assist people to find meaning for their lives and transform medical care to center around what matters most
to people.

Caring for Patients Whose Decision
Markers are Impaired
By Linley Leone, ANP-BC, ACHPN
In February, many of our colleagues had the privilege
of attending the American Academy of Hospice and
Palliative Medicine (AAHPM) and the Hospice and
Palliative Nurses Association (HPNA) conference in
Phoenix, Arizona. The three-day conference was
incredible, filled with many informative
presentations. Looking back, there were many
sessions that left me thinking for days following the
conference.
One session in particular that I found interesting was
on caring for patients whose decision makers are
impaired. For example, patients decision makers may
have dementia or psychiatric illness, or a
dysfunctional relationship, and their motives behind
their decisions or actions may raise questions that
may be less than ideal from a palliative standpoint.
The talk mentioned hard limits which are never
tolerated and should always prompt escalation and the
involvement of ethics, legal, and perhaps even adult
protective services or child protective services. The
hard limits discussed were: the presence of abuse, a
clear secondary financial gain or motivation, or a
decision maker clearly acting directly in contradiction
to the patients previously stated or documented
wishes.
The speakers went on to discuss certain grey areas,
i.e., cases where these hard limits are not reached;
however, care providers may feel uncomfortable and
question the ethics behind the case. The speakers
spoke to the fact that some families have baseline
dysfunction that works for them. We as care providers
cannot disrupt the dysfunctional relationship that may
have worked for them for years. They suggested that
we honor the past in the sense that these people have
been living a certain way for a long while and have
developed ways to cope and survive. Although we
may be uncomfortable with the situation or certain
choices being made, as long as there is no apparent
abuse or true tangible harm, we must put our personal
judgments aside.
Speakers also cautioned against pathologizing.
They suggested that we do not label conditions that
have not been diagnosed in a family member even
though we may recognize signs of some type of
mental illness or disability. I found this interesting; as
clinicians we are trained to name and diagnose
conditions. It is important to remember that the
patients friend or family member is not our patient
and we should not be labeling something we feel they
may be experiencing when we are not their provider.
In addition, naming or diagnosing may lead to other
staff using the same terms to describe the patients
family or friend which, if not accurate, would be
hurtful and destructive.
Overall I thought this talk was quite valuable. I left
the conference thinking about those difficult cases
without hard limits and how we need to be mindful
about not pathologizing family members who may
present or behave differently than we believe to be the
correct way. A vital takeaway point was that even
the most challenging person has strengths and we
should meet that person where they are; it may very
well benefit the patient in the long run.
How Attending the AAHPM Conference Expanded My Practice
By Elizabeth Cariseo, RN, BSN, CHPN

I was fortunate to be able to attend the American Academy of Hospice and

Palliative Medicines (AAHPM) and the Hospice and Palliative Nurses
Association (HPNA) conference in Phoenix, Arizona. The conference
brings together more than 3,200 hospice and palliative clinicians to share
research, clinical best practices, and practice-related guidance to advance
the specialty and improve patient care. As one of the newer nurses on the
PCU, being able to stand shoulder to shoulder with providers from all over
the country, and the world, gave me so much insight into what an
incredible opportunity and honor it is to work here at Mount Sinai
Hospital.
Stephen, Liz, Dara and Maureen
Over the course of three days, I lingered from one session to the next,
choosing those that intrigued me with their content. One that caught my attention was titled End of Life
Champions Team: A Novel Interdisciplinary Led Initiative for End of Life Care in the Emergency Department. I
wanted to see how this type of champions team could be applied to help our nurses feel more comfortable in
providing end-of-life care when moving a patient out of the emergency room proves to be difficult. I work the night
shift, and sometimes we receive calls from nurses on other floors who are caring for dying patients. The nurses ask
questions about symptom management, communication with patients, families and medical team members, and
how to best approach care when barriers to palliative care exist. So, it got us thinking, how do we help them with
just a phone call? The real answer: we cant.

Why doesnt every unit at Mount Sinai have a palliative care resource in print, specifically geared towards helping
the nurses and enabling them to work with patients and families with barriers to palliative care? We need to be
empowering nurses throughout the hospital to provide our best palliative care, not just on units with designated
palliative care patients, but also to those patients and families that dont have the official label but will benefit from
what we can provide. I look forward to seeing how I can apply the end of life champions team to Mount Sinai, and
the potential effect this may have on nursing care throughout the hospital. This thinking came from one 30-minute
case session.

Next years conference is in Boston, MA. I urge other PCU nurses to apply. It was a wonderful experience that
helped to expand my practice and helped me pass my CHPN exam!

.
Helping Children Cope with the Pain of a Parents Death
By Carla Alves-Miraldo, RN, MS, MSN, CHPN

After a death, many children want to share their story. They may want to tell you what happened, where they were
when they were told about the death, and what it was like for them. Telling their story can be a healing experience.
One of the best ways adults can help young grievers is to listen to their stories.

To help children learn to recognize, express and work through feelings, and remember their loved one, Creative
Arts Therapist and Child Life Specialist Sarah Yazdian and Rabbi Edith Meyerson organized a memorial service
designed for young people who lost a parent or sibling on our Palliative Care Unit. The memorial service took place
at the Hess Center for Science and Medicine building on December 22, 2016.

The memorial service was a developmentally-sensitive, nondenominational service that incorporated music, art
and ritual to help children and young people express and cope with their feelings of sadness, anger and loss, said
Ms. Yazdian.

The attendees were between the ages of 12 and 22. They connected with
one another as they painted a mural of darkness, prayed for healing, and
shared photos and memories of their deceased loved ones. At the end of the
service, participants were invited to light up the dark sky by adding stars
that contained healing wishes, wishes that their loved one would have
wished for them. To be joyful and to continue to grow were some of the
wishes. The mural invited interaction and is a visual representation of
connection and healing.

One of the reasons why art is powerful in the face of loss is that it can
transcend time, be preserved and be revisited in the future. Each of the
attendees received a picture of the mural as a memento, and the mural now
lives on the Palliative Care Unit. For me, the mural serves as a reminder of
all of the courageous and resilient children that I have the privilege of
working with each day, said Ms. Yazdian.

The children and young people who participated had previously worked with Ms. Yazdian while their loved ones
were on the Palliative Care Unit. This was the first memorial service created by Rabbi Meyerson and Ms. Yazdian
to specifically support the youngest members of the families we serve. They received very positive feedback.

One child said that sitting on the floor in a circle around the mural felt so much better than sitting in pews.
Another child loved that she was given space and time to remember her dad, Ms.Yazdian shared.

Thank you to Ms. Yazdian and Rabbi Meyerson for crafting a healing night for the children and for supporting
them during challenging times.

Announcements
Be in the Know
Volunteer Appreciation Night
In appreciation of the invaluable service our volunteers provide to our patients, families, staff and community, the
Brookdale Department of Geriatrics and Palliative Medicine invites you to our annual Volunteer Appreciation
Night. The event will take place, Tuesday, April 25th from 5:30 pm to 7:30 pm, at the Martha Stewart Center for
Living, 1440 Madison Avenue at East 99th Street. All are welcome to attend! Please RSVP to Katie Madden at
Katherine.Madden@mssm.edu or (212) 241-0117.

CAPC News Bites: PALLIATIVE in PRACTICE

Early Palliative Care May Be Beneficial to Lung and Gastrointestinal Cancer Patients

Early integration of palliative care for patients with newly diagnosed incurable
gastrointestinal and lung cancers improved quality of life, reduced depression symptoms,
and enhanced coping with prognosis, according to a randomized clinical trial published in the Journal of Clinical
Oncology.

The researchers enrolled 350 adult patients within 8 weeks of being diagnosed with incurable lung nonsmall
cell lung cancer, small-cell or mesothelioma or noncolorectal gastrointestinal cancers, including pancreatic,
esophageal, gastric or hepatobiliary cancers. The researchers randomly assigned patients to receive early integrated
palliative care and oncology care or usual care between May 2011 and July 2015.

Patients with lung cancer who received at least monthly palliative care consultations reported improvements in
quality of life and depression at 12 and 24 weeks, whereas usual care patients with lung cancer reported
deterioration. Patients with gastrointestinal cancers in both study groups reported improvements in quality of life
and mood by week 12.

CAPC Joins Other Leading Organizations to Create Palliative Care Policy Recommendations

The Center to Advance Palliative Care (CAPC) recently joined Cambia and other leaders in the field of palliative
care to develop policy recommendations to address the most pressing issues for seriously ill patients and their
families. These leaders came together in partnership with The Pew Charitable Trusts in order to deliver a
comprehensive policy recommendation on palliative care to the Department of Health and Human Services and the
Department of Veterans Affairs.

The letter highlights four key areas that the new administration and Congress can support in order to encourage
public and private sector innovation in palliative care:

Building a robust workforce through education and training

Promoting measures and care models that improve quality
Supporting research to strengthen
palliative care and end-of-life care practice
Improving health information technology to
honor patients preferences
NEWS STAFF INFORMATION
CARLA ALVES-MIRALDO, RN, MS, MSN, CHPN,
Editor
JILL AUCKENTHALE, RN, BSN,
Contributing Editor

SUMMER SUBMISSION DEADLINE:

JULY 1, 2017
Carla.alves-miraldo@mountsinai.org
Jill.auckenthaler@mountsinai.org
org