Tomorrow morning, at about this very same time 10 years ago, Nora left us. This blog post has been titled for a few days now, and little did we know how appropriate this title would be to the actual weather outside our home. I just woke from one of those dreams you are so glad to wake from - this time a dream of me drowning. I won't go into details but Jason just mused facetiously (when he came inquiring what I was doing up at 4:20 a.m.), "Now why would you have a dream about drowning?" Outside it is pouring...again! I think between my heart pounding from the nightmare, me thinking about our pigs and hoping they aren't sleeping in a big puddle or if any of the ducklings slated to hatch any day now will, and then my emotions going to this night almost exactly 10 years ago and it was too much for sleep to come. So here I am for a few minutes, hoping that my night of rest might resume in a bit. In the meantime, I thought I would put out there what Jason and I wanted to share with any who may wish to read it on this 10th anniversary of Nora's death. Since she died we have remained in touch and have treasured our friendship with Nora's palliative care doctor. As this anniversary approached, we wanted to ramp up our efforts to reflect in writing on our experiences with palliative care and are working towards co-publishing some piece with Dr. Crain. Some of our reflections below may be woven into that. For now, we share it with you...
Jason writing
I pushed
our old Subaru as fast as I could without getting a ticket (no time for that!)
down 81 to catch 64 over the mountain to Charlottesville. I don’t think I
ever saw the helicopter overhead, but I knew she was up there somewhere and we
were headed to the same place. They
wouldn’t let me go with her, and they said she had to go, so all I could do was
try to catch up.
When I
got to UVA and made my way through all the check-ins and found the floor she
was on, then found her room, she was out of sight, surrounded by a gaggle of
serious folks in scrubs staying plenty busy getting everything arranged.
She hadn’t been there long. I
think I recall she was crying, which was why I had wanted to go in the chopper
with her. Crying always aggravated her
pulmonary hypertension, and until I got there no one knew all our little tricks
for keeping her calm and interested. Now that I was on the scene, I still
couldn’t help at first…there was no room for me around her bed.
My wife
and I are both from medical families, and maybe that familiarity is why I was
able to ignore my usual reluctance to assert myself in public; I quickly
observed who was in charge and approached him. We had the briefest of
exchanges that communicated some of my misgivings about extreme measures for
Nora…she’d already been through so much in her 7 months, and the prospect for
her making it into a thriving childhood had been tacking dimmer by the week.
It didn’t seem to make any sense to push ahead with all available
options…the notion appeared gruesome and cruel to us. Today we were living every parent’s
nightmare, and were thrust into engagement with the full potential (for good or
ill we’d perhaps soon find out) of the U.S. medical system. I tried to
keep my own mind calm. Would the next
moment be the one in which I had to fight to keep that system from overwhelming
the judgement of Nora’s family and her doctors?
Over the months of her life we had all come to agreement on the
principles: pulling out the stops was
not appropriate here. But Janelle and I weren’t well prepared to advocate
and had no sense of how the consensus we’d arrived at might prevail in the
PICU. What we did have a sense of is
that the transmission of that message would not be automatic.
Suddenly
I had to leave. I don’t remember why…maybe my wife had arrived at the
hospital; maybe I had to sign some papers. All I remember is flagging the
resident in charge down again and clearly enunciating over the heads of the
nurses—making sure he understood my message, “Don’t intubate before we get
back!” His eyes seemed to register something more than my plea. A thought within a thought.
When I or
we got back to Nora’s side, the resident approached me this time. “Based
on what you said earlier,” he said, “I think you should meet the doctor on call
tonight.”
The
doctor on call was Noreen Crain, who works the PICU at UVA and helps run the
Palliative Care team. Palliative care was a term I’d never heard before,
but our meeting with Dr. Crain that evening was profoundly illuminating and
relieving. After 9 months of involvement (starting halfway through
pregnancy) with specialists of all sorts—few of whom seemed to be in touch with
any of the others—here was an approach to medical treatment for Nora that
started with getting a sense of our family’s values and priorities and building
on that with the best Western Medicine has to offer. The goal seemed to
be to construct a complete plan of care that would take our relationships and
her history into account and respond appropriately to new information as it
arose to promote Nora’s chances for recovery.
Failing recovery, the same plan was intended to optimize her time with
us for as long as it could meaningfully last.
Our fear began to subside, and we started to settle into and focus on
our new roles as parents of a baby who was fighting for her life far from home,
losing ground every day now; growing tired.
Over the
next week that plan was invaluable to us as we navigated the complexities of
the UVA PICU and Nora’s last days in it, which were her last days on this
earth. We felt that having articulated the approach to Nora’s care from
the outset and placing it in her file for every new practitioner to review
removed lots of the typical insecurity and worry from both sides of those
relationships such that we could meaningfully discuss the issues at hand
without hidden assumptions or hasty conclusions muddying the waters (which were
muddy enough without that!). At one point we expressed a desire to make
sure we weren’t missing something, or that all the specialists weren’t each
missing something that they might catch if they got their heads together. As Dr. Crain told us they do from time to
time in Palliative Care, a meeting was called to which one of Nora’s doctors
from each specialty that had been dealing with her came. Her case was reviewed, and we were given a
chance to voice our concerns and questions. Options for treatment or
investigation were discussed, as well as the drawbacks of each. The prognosis that developed for Nora among
us at that meeting was bleak indeed. The
question was raised as to whether anyone could think of anything to do that
might turn up a meaningful option for recovery beyond what was already being
done. It was met with silence. That was the moment I was able to let go of
the idea of being Nora’s problem solver and trying to see her through this to a
state of health. The racking sobs overcame me then and could not be
contained; and when they passed, I was ready to move into yet again another new
parenting role: caring for my daughter as she approached and passed into death.
It wasn’t
long after that that Nora’s exhaustion seemed to be overwhelming her mind.
Treatment tools were put in place, partly managed by us, to keep her from
suffering excessive pain or anxiety as she declined. We, as the ones who
knew her best, were trusted with judging when she was feeling well or poorly. Having put our minds at rest that all that
could be done for her was done (though more could surely have been done to
her), we were able to accompany her with minimal fear or misgivings in her
final hours. Her passing was still excruciating…how could it be otherwise? But there was peace. Given her circumstances, could we ask for
more than that?
Looking
back, we feel so grateful for the excellent care and attention Nora and even we
experienced at the hands of the UVA staff. Why should we have had such a
good experience when so many others travel this kind of passage with painful
memories, trauma, regrets? We consider it the result of privilege and
plain old luck. With our liberal-arts
educations and with doctors in the family, our ability to articulate our perspectives
to the medical providers is probably not typical. Conversations with
them, therefore, were able to range beyond the mere facts of Nora’s condition
and options for care and into the territory of values shaping the approach well
before arriving at the PICU. I remember
a friend that had gone back to med school and was considering interning at UVA
visiting us during Nora’s month in the NICU. At one point I expressed
some of my misgivings about the ways intensive technologies are so easily
brought to bear. She turned to me and
stated with passion, “You’ve got to believe it’s worth it!” I was brought up short. “No”, I said, “I don’t have to believe
that.” It is not that we don’t support
availing oneself of medical support—even extreme measures—when wisdom suggests
it. And we’re well aware that even the wisest families and medical
systems will sometimes get it wrong. But
we were painfully aware of how easy it is to take the extreme approach; in our
culture that is the surest way to avoid the appearance of failure or
negligence. With Nora, we were terrified
of running afoul of that dynamic and until we bumped into the Palliative Care
approach, we knew we stood a very real chance of doing just that.
The
argument can reasonably be made that our family was primed for the Palliative
model. Palliative Care is an intentional and holistic frame through which
to view and inform the application of medical ability in a given situation, and
from the beginning of our family life we have tried to adopt an intentional and
holistic perspective and approach to all of life. So in the interest of
full disclosure, Palliative care clearly matched the way we were already
thinking. I’d like to suggest, however,
that the Palliative approach has strong potential for relieving lots of anxiety
in the medical system experienced by care providers as well as patients and
their families, and we’d do well to apply it broadly beyond the end-of-life
period it is usually assumed to be appropriate to, and not just for families or
patients for whom it is a wonderful and obvious fit as it was for us. A
family involved with Palliative care may still choose extreme measures (I can
imagine many circumstances in which our family would do so), and a family
without that involvement may choose to decline them. But I believe that in either case they will
more likely make those choices confidently and be able to live through their
encounter with life-threatening illness with fewer regrets, on average, than
the typical family in this circumstance now does.
I shudder
sometimes when I think back to that moment in the PICU when I caught that
resident’s eye and gave him the bluntest of philosophical instruments to inform
his team’s work. Knowledge of our reluctance for intubation for Nora was
a tool they might well have needed and wished for in a crucial juncture with
Nora’s care, and we, the only ones who could possibly provide it, were not
asked for it but had to insert ourselves. As it turned out, they probably
did not make any changes to her care in that moment based on our values, but it
was our needle’s-eye of entry into the Palliative Care model. It pains me to consider all that was pivoting
on that instant; would we ever have gotten into the place of peace in Nora’s
death that the Palliative care approach facilitated without it? The right
family finding the right practitioner with the right approach at the right time
by sheer luck may make a good story, but it is not a system for ensuring that
families encounter the care approach that they need. What a difference it made for our family that
we did!
Janelle writing:
Nora died
well in the presence of those that loved her most. Her death was both heart
wrenching and beautiful. I am grateful to be her mom and was privileged to have
been the one to hold her little body as she took her last breaths. In the last
days of her life, we felt empowered to be the best parents and advocates for
her that we could be and the medical professionals around us supported our
efforts and offered the best of what they could to make her (and us)
comfortable. Her death is something we have grieved for the past decade, but we
were not traumatized by it.
How is it
that when I think back to Nora’s life and death, the first month of her life is
much harder in many ways for me to reflect back on than the last week? In those
first weeks in the NICU, we were being assured over and over again by the
medical professionals that she was stable, that we would be taking her home,
that she was much better off than many of the other babies being cared for
there. The message was mostly one of hope for a future for her. In contrast,
there wasn’t a lot of good news to receive in the last week. We were present as
options dwindled, doors closed, and hope of taking our baby home slowly faded.
When I
have the opportunity to talk about our journey with Nora, I credit palliative
care for monumentally shifting our experience of caring for Nora at the end of
her life and in so doing also altering the trajectory of our grief journey.
Some of
the things that characterized our time in the NICU included: feeling left out
of the loop on the care plan for our daughter, being made to leave her side
when medical professionals “rounded on her,” having to sanitize ourselves thoroughly
and get permission each time we wanted to be with her, needing to ask to hold
her or in other ways participate in her care, putting up with nurses calling
her “my baby” as I desperately wanted to bond with our second daughter and
needed help doing so under such challenging circumstances, having so many
specialists ask us questions and yet not have any sense of an overarching plan
or approach to our care for her, listening to beeping machines (hers and those
of all the babies around her) that wore my nerves down, trying to be a family
in a tiny sterile uncomfortable pod with a 4 year old who was also trying to
make sense of the transformation of the world as she had known it, and
wondering how long I could survive with my heart breaking over and over.
In
contrast, a few things that stand out when I think about the last week of her
life include: being taken seriously by the medical professionals who were part
of Nora’s care and being seen as the “experts” and the ones that knew her best,
being asked questions that no one had taken the time to or dared to ask before
about her needs and ours and what we wanted for Nora and for our family, we
were included in a team meeting with all those that had been caring for her,
they transitioned us from the PICU to a regular floor where family and friends
could come to be with us and say goodbye to Nora with privacy and calm, and we
were given space and allowed to make decisions about how to care for her based
on how she seemed to us (with the noisemakers on machines turned off so we were
not distracted from being truly present with her).
I think
for us humans the many “what ifs” of life can be hard to contend with. Possibly
never more challenging than when reeling from the death of a loved one. I do
not know how my experience of grief would have been different if Nora had died
on the operating table while undergoing a lung biopsy, but I feel pretty clear
that it would have been altered significantly. The care Nora received in the
last week of her life, the attentiveness of the team working with us to meet
her needs and ours, and the honestly with which they spoke to us about the
possibilities for Nora’s life being extended and/or enhanced by various
interventions is a gift that keeps on giving for those of us that remain
without her. We were able to turn the entirety of our focus to loving her
well, supporting her comfort, and letting her know how much she meant to us and
how proud of her we were. We were not bogged down by questions of what more we
could/should be doing. We were not distracted by medical professionals bugging
us about things that at that point really didn’t matter. Nora’s care plan was
in her chart. Everyone was on board. We were truly a team in the best sense of
the word!
In
addition to staying in touch with Noreen over the years, I also remember the
name of Nora’s nurse the night she died. Nurses make such a huge difference in
how families experience a hospital stay. I cannot think of one thing I would
have asked Molly to do differently that long night if we found ourselves in a
similarly excruciating life situation. She helped us rearrange the room to have
a bed on the floor for Nora with both of us. She made it very clear that she
was available whenever we needed her but she would not bother us. She made it
so that we could not see or hear any of the machines. When we determined that
Nora seemed uncomfortable or anxious, we would go to the door and she would be
there almost immediately and would bring medicine for us to administer. The
room felt sacred; like a space inside that large hospital had been set aside
and made safe. Safe for us to weep. Safe for her to die with dignity and at
peace. The gratitude I feel for that gift is hard to articulate with words.
-----------------------------------------------------------------------------------------------------------------
Maybe
there are people for whom the words “palliative care” trigger negative
connotations or who might feel inclined to say “that’s not for me.” I would
love to challenge that notion, since I don’t see palliative care pushing anyone
to make any particular decision as it relates to caring for a loved one who is
very ill. To me palliative care offered us a framework and created space for us
to get in touch with what we needed and wanted, both of which were essential in
enabling us to craft a plan that we could be behind and at peace with.
That plan
might look very different for different people. That’s ok! We will all have
different answers to questions about what our core values and goals are.
Palliative care for us was about asking the questions, honoring our answers and
working with us to meet our goals for Nora’s care.
I have
heard too many stories of family members working through the experiences around
the death of a loved one with many regrets. Loved ones reeling over the last
days their loved one was alive that were bogged down with difficult
interactions and arguments with medical staff or feeling like different medical
persons were not talking with each other and had different ideas of what the
plan should be and then things getting slowed in the approval processes and
their loved one suffering unnecessarily.
I have
not had anyone tell me they wish they had been included less in
decision-making, or that they wished their values and hopes and fears had been
ignored, or that they wished their loved one would have died a less comfortable
death. I think we all want to be respected. We all want the chance for our
lives to end well. We all want to be treated with dignity and have what we
value acknowledged. For us, the experience of being connected soon after Nora’s
was airlifted to the PICU at UVA with Palliative Care is what enabled us to
experience the most painful week of our lives as one dappled with beauty and
sacredness and authenticity and ultimately without regrets.
Janelle, I first met you just days or maybe weeks after Norah died and though we've talked about many things, this is the first I've heard the story of her death. Thank you for sharing. That last sentence is so powerful. Hoping along with you that Palliative Care becomes a matter of course and that more of us will find a way to make room for the chace to have endings "dappled with beauty and sacredness and authenticity." Sending love from us this week.
ReplyDeleteThis journey with your beautiful Nora continues to give love. Nora's love for you and your love for her is a secret sacred bond that only all of you can really know. By giving us this insight into your sacred space, both she and you have continued the love to grow. None of us know when death will come, but it will. Allowing us to see your pain and the issue of making decisions appropriate for the dying and not based solely on those left behind is so loving. We are our brothers keeper and we may be on a similiar journey someday as well. Thank you for loving enough to share Nora's love story.
ReplyDelete