Sunday, June 3, 2018

Quieter Waters: The Flow of Nora’s Story Spills into the Palliative Care Pool

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.


  1. 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.

  2. This 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.