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Pirouetting with Humanity in Lung Transplantation


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Tereza Martinu, MD
Duke University Medical Center
Durham, NC, USA
tereza.martinu@duke.edu



With contributions from Lynn Bowlby, MD, Shane Nolan, Lynn O'Neill, MD and Bill Taub, MSW



Introduction (by Lynn Bowlby, MD)

This text is from a recent session of Schwartz Center Rounds®, entitled There and Back Again: A Transplant Journey, which took place at Duke University Medical Center on July 9, 2014. Schwartz Center Rounds is a monthly interdisciplinary conference that offers clinicians a regularly scheduled time during their fast-paced work lives to openly and honestly discuss social and emotional issues that arise in caring for patients. Schwartz Center Rounds began at Duke University in September 2012 and has generated a tremendous response from participants. An initiative of the Schwartz Center for Compassionate Healthcare, the rounds take place at 320 sites in the U.S. and U.K. including Massachusetts General Hospital, Brigham & Women's, Vanderbilt, Mount Sinai, Emory, Cleveland Clinic, UNC-Chapel Hill, and Duke University Medical Center. For more information about Schwartz Center Rounds please refer to www.theschwartzcenter.org

The focus in these Rounds is to explore the patient-provider relationship and the emotions that surround it. A panel of 3-4 caregivers shares their experiences in taking care of patients. With the increasing challenges in medicine, reduced time with patients and augmented administrative responsibilities, time can be limited for focusing on the patient and the impact of illness on their life. In the midst of a medical world, which is growing increasingly technical and complex, Schwartz Center Rounds is an opportunity to acknowledge and mature our human perspective in caring for patients.

For the first time at this institution, a family caregiver was invited to participate in the panel discussion along with professional staff.

Medical History (by Tereza Martinu, MD):

Ms. Ann was a 61 year-old woman with a past history of emphysema who underwent a bilateral lung transplantation in May of 2011. She had a prior history of depression and bipolar disorder, which had been well managed, as well as a lung infection of Aspergillus fungus. Her early post-transplant course was complicated by multiple admissions for issues such as dehydration, depression, post-surgical wound infection, respiratory viral infection, and severe headaches. She also had two early lung rejections, which were successfully treated with high-dose steroids.

Subsequently, Ann had a relatively good year, with great lung function and minimal collateral issues. During this time, her quality of life was still somewhat compromised by recurrent headaches and depression. In June of 2013, two years after her transplant, she developed late-onset acute rejections. The first rejection episode was treated with high-dose steroids, but Ann's lung function continued to deteriorate. We then treated her with Campath, a very aggressive form of immunosuppression, which can be associated a multitude of side effects. In spite of this treatment, Ann's lung function deteriorated further with worsening oxygenation and increasing carbon dioxide levels. She became oxygen dependent and also developed altered mental status and anxiety. At that time we had discussions about end of life care. After two hospitalizations, Ann was transferred home with hospice and later transitioned to an inpatient hospice setting where she died in September of 2013, a year, three months, and 19 days after her transplant.

Ann's Journey (by Shane Nolan, Ann's husband):

Our journey began when a doctor said to my wife "your lungs have been damaged irreparably and the only solution would be a double lung transplant."

I recall feeling a bit surreal as I had never heard of anyone getting a lung transplant. Generally, I felt quite happy, as this was going to be a solution to my wife's deteriorating pulmonary problems. It all seemed pretty amazing.

The side bar to this was also the realization that I would have to resign my job to take care of Ann. There was no way she could do this without a full time caregiver and advocate. Even then, I am not sure I realized completely what lay ahead.

Waiting for transplant

From the time the pre-transplant coordinator called us in December 2010 to tell her she was accepted into the program to receiving the transplant, both of us felt that we were on a path with a lot of unknowns. As the Duke pre-transplant process played out with the countless tests and patient physical preparedness, both of us worked at trying to see this as an "adventure". Ann's spirit faded on more than a few occasions, but I was always convinced that we could do this. Coming to the clinic for months before the surgery, slowly but surely, one begins to think that at Duke "all things are possible". We both fed on that very distinct feeling.

The transplant

When the coordinator called to say that this was it, I think we both were in that intoxicating cocktail of emotions (anxiety, joy and fear) and just trying to make sure the other was going to be "okay".

Seeing her in ICU just after the surgery and in the early days, I began to see that "getting the transplant" was just the beginning of a changed life. And that was the first time that I worried.

After 12 days in the hospital, we went back to our locally rented apartment. Despite counseling that it may be difficult, nothing prepared me for the full on, seemingly 24 hour care of the first days at home. Though thrilled that she was being released, the short ride home was quiet and anxiety filled, especially after stopping at the drugstore to pick up a grocery bag with $2000-worth of time-dependent drugs.

This is where the real test began. Those first days could only be described as "drinking from a fire hose."

Caregiving

Clearly, the biggest job—it seemed—was keeping Ann motivated and positive when side effects like depression and migraines developed. Fortunately, Ann never fell into that self-conversation of regret.

Ann's last 12 months had various significant health ups and downs. I recall wondering then if I was just watching Ann die slowly or observing her living poorly.

Rejection and diagnosis

A few early rejections and their quick fix may, in retrospect, have given us (or just me) a false sense of security. Rejection was not that scary, just very inconvenient.

That being said, as Ann went into what would ultimately be her last series of rejections, I surely sensed the graveness of the event. I think Ann did as well, even before she was hospitalized and subsequently diagnosed with chronic rejection. She had also now presented with shortness of breath and a series of dropping PFT's. Things did not look good.

The final yeoman efforts in the hospital to turn things around began to weigh heavily on us both as Ann got sicker quickly ... our transplant solution began slipping away.

I recall how crushing that felt like and not wanting Ann to know.

Nearing the end of the Journey

My first reaction to being visited by the Palliative care team was resentment. In Ann's case it was even more so.

How could they be giving up? This is Duke ... "all things are possible" here. It seemed like we had just changed buses and now we were on a new bus speeding to the edge of cliff. We just didn't know where the edge was.

Ann's deterioration, however, was rapid so I really didn't have much time to dwell on anything, instead focusing only on Ann.

The word "hospice" was now used in open discussion; like squeezed toothpaste, we couldn't put it back in.

The final days of Hospice were amazingly pleasant. The home nurses that came were just what Ann (and I, for that matter) needed. Ann was moved to the Smithfield location where she knew 50% of the volunteers and was now within miles of all of her siblings. After the controlled clinical environment of Duke, Ann didn't want chaos in her last days. Hospice answered that need perfectly.

Ann's pulmonary team from Duke stayed by our side to the end.

From a caregiver's perspective, I knew that, in the end, we did everything we could have done.

On September 7, 2013, the caregiving role was suddenly over. The need to manage her meds, meals and even laundry, stopped. As my daughter so insightfully stated, "you not only lost your mate of 30 years, but also just lost your caregiver job."

Ann and I had been on quite a journey; one that had enriched us both. Despite the outcome, I think it made us better people in the end.

The Transplant Pulmonologist Perspective (by Tereza Martinu, MD):

I like the word "adventure" that Shane used to describe the lung transplant. It really is an adventure, with times of excitement and times of fear. I often warn our patients, both before and after transplant, that they will be going through a physical and emotional roller coaster. But I rarely acknowledge to myself that the emotional roller coaster takes place in my mind as well. Preparing for the Schwartz rounds made me reflect upon my own emotions and feelings that accompany each patient through their lung transplant journey.

Initially, when I met Ann and Shane, things were a little rocky with frequent admissions. But at the same time, Ann's lungs were improving. To describe my feelings during this time, I would depict myself as swaying like a pendulum between two sets of emotions. On one hand there was a feeling of satisfaction, a feeling of awe regarding the miracle that can be accomplished, really, in transforming a breathless person into someone who can breathe peacefully; a feeling of hope that this will last for a long time and that things will get even better. But on the other hand, there is the realistic "me" with feelings of gnawing worry. The transplanted lungs, in almost all of our patients, will fail at some point. So I can't help but have a constant sense of temporariness and inevitability.

When Ann developed her late onset rejections and her lungs started to fail, I definitely had a sense of frustration and helplessness. As Shane mentioned, this is Duke, and this is lung transplant; we want everything to be possible. We never want to give up. I always feel like, along with my patient, I go down kicking and screaming, coming up with every possible intervention. But at the same time, with Ann, I sensed that things may not go well and that Campath may not work.

I think Ann helped me a lot when she told me "I'm not afraid of dying but I'm afraid of dying in pain." I really appreciated her voicing, out loud, that death was ok ... but that she was scared of the dying process. She emphasized that we needed to talk about quality of life during these last days.

I always try to have discussions about the end-of-life sooner rather than later, often even when patients are still doing well ... but it doesn't change the fact that I find it hard to have these talks and that it's uncomfortable to bring up the topic. There is this fear of disappointing the patient and their loved ones; a fear of failure. Ann sent me a note just a few weeks before her death. I would like to relay her note to you:

"Tereza,
On my last visit with you at clinic, I told you 'you are to blame for this.' Though said in jest, I have worried about those misspoken words since then. Please accept my apologies. Your care for me has been wonderful. I could not have hoped or wished for a better doctor over the past two years."

I remember very clearly that clinic visit. I never thought Ann really blamed me. In fact, we both laughed and joked about "everything being all my fault" during that visit. But the thing is, I blamed myself. I always blame myself on some level. Did I miss something? Should I have treated her differently ... earlier? Did my treatment actually make her more miserable? As much as I have learned to deal with these feelings of guilt on my own, her note really helped me come to terms with them in her particular case and it helped me refocus on the positive.

I think that what made Ann and Shane so memorable was their persistent positivity. In spite of the migraines and the up and down depression, they always remained extremely appreciative of the time they had together. In spite of all the complications that Ann had, she was always very thankful and smiley. We always had time for jokes and laughter during clinic visits. And I would like to thank Ann and Shane for those precious times.

A Palliative Care Clinician Perspective (by Lynn O'Neill, MD):

As is often the case in my work in palliative care, I met Ann and Shane towards the end of their journey at Duke. Before I speak specifically about Ann and Shane, I want to speak more generally about my work in palliative care. The most common response I receive when I tell people in healthcare that I'm in palliative care is, "Wow ... that must be hard." My response, ever the optimist, is usually something like, "Actually, it is very rewarding. We have the opportunity to help patients and families at a time of great need." And this response, which I repeat to someone at least once a week, is true. However, the initial response of my healthcare colleagues—the "Wow ... that must be hard" response—is also true. Yes, it is hard. It's hard to shine the light of clarity on a terminal diagnosis for a patient who might have been told this before but, for whatever reason, was unable to hear it. It's hard to work amidst family dynamics that are complex even in the good times and much more complex when the family is confronted with the serious illness of one of its members. It's hard to broker conflict between colleagues in our own healthcare system, people who all have the best interest of the patient at heart but who have strong opinions about how to achieve the best for the patient.

I will say, however, that I don't think I'm alone in this—this hard work. And I don't think we're alone in palliative care in the hard work. All of our work is hard. The important thing for me is figuring out a way to balance the hard with the rewarding. The way I describe it to students who work with me is that there are some encounters that completely deplete you—those that open up the spigot and let all of the water drain out. And then there are those that fill you back up.

This is where I finally get back to Ann and Shane. What I remember most about meeting Ann and Shane is that my first encounter with them was one of those that filled me back up. They were so quick to share their own experience with the transplant journey that I almost immediately felt like I had known them for months, rather than minutes. I remember how Ann's face lit up when she talked about being able to shed some of the transplant restrictions; no longer off limits were things like enjoying a glass of wine and going out in public in a place where germs might abound. While I knew that this shift in the focus of her care was a major one for her and Shane, it also seemed that she was facing it with the same composure that she had possessed during the entirety of her transplant journey. And that encounter is why I do the work I do. It filled me back up and allowed me to go about the rest of my day and week, meeting each patient and family right where they were and providing them with what they needed in the moment.

Wrap-up (by Bill Taub, MSW):

Today's Schwartz Center Rounds focused upon the themes of loss and hurt. It is so difficult for us in life (and at work too) to fall in love with people and then to lose them. In the case of our patient, loss meant Ann's death. Loss also meant the difficulty of dealing with the fact that Ann's double lung transplant wasn't going to keep her alive for decades as we had all wanted and hoped. Similar situations often force upon us an unwanted necessity to learn to function with an empty spot in our lives. Life just isn't fair, is it? And losing the people we love and count on is one of the hardest challenges of all. Are we up to continuing on and making life the best it can be without these loved ones? Maybe we can, if we truly can be supportive of and understanding toward one another. ■

Disclosure Statement: the authors have no conflicts of interest to report.




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