The Conversation Project was kicked off at the Institute for Healthcare Improvement's 26th Annul Forum: Engagement by keynote speaker and Adviser last month in Orlando:
"People have concerns besides simply prolonging their lives."
- Atul Gawande, MD, MPH
The Conversation Project is meant to encourage healthcare professional to talk to their patients and families about "what matters to them" during end of life. For personal and professional reasons, this message resonated with me deeply.
"We must be willing to let go of the life we planned so as to have the life that is waiting for us."
- Joseph Campbell
Having 'the Conversation' with Marianne…
Marianne had suffered a lifetime of complex acute and chronic trauma(s)…lists of labels to describe her medical, psychological, and social history that seemed to describe a woman whose hopes were extinguished before they had a chance to catch on fire... she couldn't catch a break.
Upon closer examination, standing on her corner of the block, and within her tribe…
She was a spit
fire. She was a strong-willed ethereal creature
who made you feel oriented and connected … …she was someone, you just know who you are when you are with her.
Positivity, imagination, appreciation, and love grew with
each acknowledgement. She would rejoice
at every thoughtful gesture. Her hugs were felt deeply and from across the
room. She truly was a gift to humanity. She was a “best practice” in presence, appreciation of
life, and vitality.
I brought Marianne a painting I drew at a bachelorette party
paint night. No Picasso, but I poured my
heart and soul into that painting. We
were suffering deeply, death and despair were all around us last summer, and this canvas was an outlet. Other bridal party paintings were bright and
cheery, consistent with the tone and mood of the party. My dreary fog hazed Cape dunes may have stood
out to some as alarmingly sober.
Despite this, I adored my painting. It helped me cope. I felt my less-nurtured self taunting me; mine
feels inferior to the others.
Of course, my daughter (8) verbalized my internal conflict in a way that
made me feel even more vulnerable, “It looks like a hay-stack.” My beautifully crafted mood piece was not as
bright or cheery as the others – but hay?
I had no comeback. I looked for admiration
from someone that gave good hugs, someone that would vouch for me. “I am going to give it to Marianne,” I said.
Then we were at her bedside.
There were three people living in her room only separated by curtains -
three end-of-lifers without papers. There
was no hope or happiness in this room.
Marianne was the most able of the three in body, mind, and spirit.
I presented my gift to her.
She was giddy, “Oh wow! Put it
up. Put it up right there. That will liven up the place.” And sure enough, as her son positioned the
painting on a remnant nail sticking out of the chipped light green wall, the
sunlight glistened through the curtain and landed directly on the hay-stack.
I
saw the sunrise; I saw hope in that room:
She lived vicariously through us. Despite this, she never made us feel bad for
not coming more frequently and ALWAYS seemed genuinely surprised when we “remembered
her.” She would say, “Some days I barely
remember myself. How could I expect anyone
to remember me?” We would often attribute
these statements to "the fog" from her brain cancer.
Now that I better understand her language, mixed metaphors, history,
humor and sixth sense… I imagine her words differently today.
Disorientation and dissociation… …were experienced in the
short time since my engagement in her care… She suffered a series of traumas
that would take any ordinary soul into the crushing effects of depravity. A life of suffering … a critically medical
ill, vulnerable survivor… she continued to turn up in the system of care...
“I am like a bad penny,” she once said about
herself to her Oncologist.
Found down after a week on the floor in a condemned filthy inhabitable apartment… made homeless by a call to 911… ...suffering breast cancer… with new
mental status changes… six months absent from medical treatments… now…
…diagnosed with a urinary tract infection… discharged to a SNF (Skilled Nursing Facility) - a humane alternative to a homeless shelter or to the street, we
were told.
We were desperately grateful the
SNF accepted her.
Despite exhibiting major symptoms of significant acute and chronic life stress, what mattered to her were simple life pleasures. I wanted so badly for her to have more.
Dignity & Self-Determination
She actually had metastatic disease to the brain, which seemed to be effecting her communication patterns. Outpatient radiation
was rapidly initiated. Marianne told her family, she didn't know why they started her back on radiation. She was receiving expensive care she didn't want. Now in a
highly over stimulated environment, without regular routines of care and
comfort… (Tigger (the cat), Amaretto, Double Diamonds, Zanax, a pipe of medicinal marijuana
within the judgment-free zone of home)… she was disorientated, confused, and
having significant discomfort.
Advocacy was an uphill complicated battle. I could see why from her perspective, care often seemed to be
driven by reimbursement processes and privilege rather than what was the humane, decent, often simple thing to do. She would say, "They are going to keep me alive until the money runs out."
We wanted to take her home, but were so intimidated about
providing end of life care for her. Despite having been at the bedside when a patient expired, I had never hosted a dying confused person in their final days. Marianne had.
She had taken care of her mother who also died of brain cancer. She lived with regret that her then eight year old son was the first to find his grandmother dead. She wanted to preserve my daughter’s
childhood and often encouraged us to make child play a life priority!
The Oncologist wasn't ready to have ‘the conversation’ with
Marianne. She truly and deeply cared for
and wanted to protect Marianne. She had
gone through great lengths, the year before my involvement, to keep her safely
at a nursing home while undergoing aggressive treatments (mastectomy, chemo,
radiation) for an aggressive disease.
I recommend every Patient & Family Advocate to empower themselves with a pen and a piece of paper or even video to record their health transactions because of the concerns outlined here. When seriously grave information is exchanged, emotions color perception. It is often difficult to remember what transpired in a 15 minute visit. The accounts of these experiences are more sense recollections and impressions - memories rather than a documented report out.
Family engagement had been minimal. An only child, her son, had little capacity
for coping with his mother's suffering. He
was another vulnerable person out on the edge.
He came to appointments whenever he could, but often stayed
outside. The Oncologist had not remembered him. The under resourced, poorly designed systems
of care had left this provider fragile and defensive like a wounded animal. She was rude to him, "I am sorry. Who are you? This is the first time I am meeting you," she talked over him when he spoke emotionally about what mattered to him - being informed.
In her defense, she was overbook to increase productivity, upgrading her electronic medical record to improve efficiency, and behind on her documentation to ensure quality. She had no bedside manner or patience with us.
She was over stressed; reactive, hurried… and she had an agenda before she
walked into the room. Meaningless questions
like, “Are you still smoking?”
The primary care
had sent the oncologist an email, which the oncologist had not fully apprehended; and, therefore dismissed. When we, the family, came in with a four point coordinated agenda:
- A Palliative/Behavioral Health consultation (We
wanted to know if Marianne’s expressions of wanting to withdraw from care
through actions, behaviors, and words were consistent with her beliefs and
values and were not caused by her acute multi-layered metaphysical crisis (brain
tumor; preexisting psychiatric condition with history of psychosis; loss of
significant other; new homelessness).
- We wanted to be identified as part of her care team by having her Advanced Life & Health Care
Proxy/Personal Patient Advocate documentation to be agreed upon (consistency in terms) and
shared with and among the health care team.
- We wanted an easier way to communicate needs within
the health care teams – via email, telephone, Skype.
- Lastly, we wanted an educated guess as to the
prognosis and anticipatory guidance for her cancer. How long would we we have left? What are the expected symptoms at later stages of disease?
“You’re not giving up, Marianne? Are you?” she presumed.
We left that day with orders for her to start yet another round of
chemo after radiation.
I took Marianne to get her facial hair waxed and wigs.
Indomitable spirits do not “give up” to
cancer.
What happened to drive Marianne's behaviors?
After her last round of surgery, chemo, and radiation… her boyfriend,
Allen disappeared. He just stopped
coming by to see her. She wondered if he
had been arrested or dead, but had no anger or anxiety over the loss. It just was.
She cuddled a stuffed animal we gave her, “Awe, I am going to call him
Allen.”
She verbalized her desire to stop treatment that summer, but
her language and context went unheard:
“I
told that doctor that they can take their fucking treatments and shove them up their asses…”
“Are you done though?
Did you finish your treatments?”
“Yeah, I am done,” she would tell her friends and family.
Extreme conditions forced ‘the conversation’ with
her family… and then with the health and care systems. She had been out of care for six months. She had new mental status changes. She did not want to die. She did not want to give up. She just wanted to be comfortable… left
alone, not bothered or pushed into anything that did not bring her comfort and
joy.
We took her out for fried clams. She bought herself a blue straw wide brimmed
hat, sunglasses, and a pocket book. She
enjoyed every moment we had together.
She wanted to ensure Tigger would have a home and a
family. Tigger was her cat, a spirit
animal. She raised him from a kitten to
be empathetic and in tune with others. I
never met a cat like Tigger. Tigger has
a whole narrative unto himself.
She wanted
sweet frozen alcoholic drinks, freedom to go outside for a smoke, a shower
every few days, and help with grooming, food preparation, and elimination
activities. She wanted to care for herself as much as possible. Her condition required her to have help to do these activities safely and with dignity.
For her “funeral” we followed her unconventional wishes.
We had a hedonistic rally of all the troops
at a local bar and restaurant. She was
cremated in a box on the table with pictures displaying her spirit… and a tall
frozen mudslide. Cheers. Everyone came to pay respect, tell her
stories and have a drink in her honor.
Later we spread most of her ashes in various places in the harbor or
along the shore. A lifelong East Boston
resident, the harbor was her playground.
I kept some of her ashes and made her some promises.
Marianne wanted to donate her body to science
after she died. Although we spoke to
Harvard Medical School, they were very sorry to tell us they could not take her
body as she did not meet the weight requirement. She was too heavy. I promised to spread some of her ashes on
their campus and to spread the word –
Medical science has to discover and
learn from
those that do not fit in their boxes.
Towards the end, I said to Marianne, “What would you like?” She said, “A night at the White House.” Although, spreading ashes at the White House
might be seen as an act of vandalism at the least or terrorism to the highly charged
– I choose to hold onto her ashes as a reminder –
We desperately need to redesign
our
society, our systems of caring
through advocacy and political actions
in order to nurture and support life
at all phases and stages.
Having the conversation is not about telling people how we want to die. It is not a death panel. Rather, it is all about communicating how you want to live and be remembered given the limitations of our reality and imaginations.
What matters to us?
What is our purpose? What are our values, beliefs, and experiences; how do those attributes drive our individual stories? How do we sense, visualize, and imagine (make the movie in our heads) our diverse life experiences; how our expressions of self intersects and aligns with infinite other selves in the universe? What is our shared narrative? What is our story?
You will be remembered, most kindly by all
those honored to know your story.
Rest in Peace Marianne Suarez
Mother's Day 2014
