Available now! Click on the link below. (I cannot seem to import the image to show as an image). I hope you will get it, enjoy it, learn from it, celebrate with all of us authors whose stories are in this work, and share the information with your friends, family, and colleagues. Order it from http://www.UCMedicalHumanitiesPress.com and get a 30% discount. All proceeds go to the University of California Medical Humanities Press, which allows them to publish more work in this genre. It will be available at bn.com and amazon.com in about 6-8 weeks.
If you are there, this will be a must attend!
We had a lot of fun in our hours together in the Labor and Delivery Suite at Virginia Mason Hospital, Seattle, from 1983 until 1989, when I left to take my practice to the University. “We” would be the nurses, midwives, support staff, and doctors from the hospital and two community health center practice groups. There’s a lot of talk these days about teams, as if it is a new concept. It’s a great concept; it’s not new, and algorithms,mnemonics, and organizational protocols telling us to communicate or how to communicate do not make the concept come alive. Relationships are the bricks and the mortar comes from commitment to our patients and to the relationships within the team.
This spring a new patient appeared on my schedule. I recognized the name and I recognized her: big eyes, easy laugh, and organized notebook with items for us to discuss as catch up—items she felt I would need to know if I was to become her primary care doc (PCP) and we were again to be a team. It had been 25 years since we had worked together as nurse and doctor in Labor and Delivery (L&D is what we call it), yet it could have been yesterday.
…Only this time we would not be working together with a laboring and birthing woman and her family. It was to hopefully keep her healthy, now in remission after chemotherapy for lymphoma. Her cancer care was in our institution and she and they felt a PCP in our system would add to her team that included her husband, daughter, oncologists and nurses; they hoped my joining the team might make her care coordination easier.
After she had completed chemotherapy, her first scan was negative and she and her husband and daughter were optimistic and ready to celebrate. I felt like an old friend had walked back into my life. I shared her optimism and thought, “how lucky am I? Piece of cake: reconnect with an old friend, work on her health goals now that chemo is over…”
That is what teams do if they work: they breed strong ties and create a choreography that could translate to different settings even though we don’t make those translations often. In this case, we settled in, started to work on some of her non-cancer concerns, caught up on her life and hoped for the best. I found out she had left L&D nursing and was a respected nursing educator in a local program. She and her husband had one daughter and she shared how proud they were of her. She told me how, as their daughter grew, they took frequent outings to various parts of the state and usually could be found in the summer crabbing in Puget Sound from their boat. I remember their wedding and could picture the next installments as she relayed the details. Did I go to the wedding? Or were her descriptions so vivid I feel in my memories like I was there? That is the thing about teams. We all own part of the other’s story with a connection that weaves in and out and in an out.
During these conversations I could easily transport myself back to L&D, day or night, someone in labor, sitting around with whoever was there– nurses, the midwives from the hospital midwifery group, maybe one of the family med docs from the other community health center group, maybe the obstetrician on call. If one of us needed help, there were always hands to help. If a woman came in and her on call person was not there, we would help. If my patient came in and I was not there yet, others would help.
What I remember about Linda, the name of my colleague now patient, is her voice. She could tell one of us exactly what she thought and what she thought we should do about it, always with this cadenced softness that did not hide the direct and clear opinion. She could (and would) manage a complex patient in the midst of chaos with the calm of a neurosurgeon and she could coach a reluctant woman when to breathe and how to push when I needed to take a take a deep breath break myself. And laugh…oh I can hear her laughter. She could laugh at herself and funny things she would share. Laugh a lot and laugh loudly, easily tickled by life and our work, easily finding what was important, never disrespectful, just keenly insightful to the meaning, the amusement and the delight—all of it.
Teams…they do create memories. I don’t remember a mnemonic. I do remember the people who touch me and allow me into their lives. Though I am not sure, as I remember the flurry of the nursery filled with the L&D and pediatric nurses and my absolute excitement and disbelief at the show of support, to say nothing of the import of the moment, I believe Linda was right there when my son was legally handed to me at our hospital and again at the shower the nurses had for my son and me a couple of weeks later. I know she celebrated my becoming a parent, and we all shared her meeting her Larry and her wedding a short while later. And then we lost touch.
This spring of remission was short. Her lymphoma was found again, not even hiding very far from her oncologist’s detection. Her remission had not been real. She had more chemo and prepared for stem cell transplant. During that time our biggest conversations were about how to get ready, would she have to live closer to the hospital during this treatment. And she began to accept these realities and in her usual very organized way, she set about making all the arrangements.
Just a couple of weeks ago, with her port in place for the transplant, she was admitted with a fever. We hoped it was an infection, maybe the line that had been placed. Her doctors tried to hope and did cultures and started antibiotics. Within a couple of days, it was clear. No infection. Her cancer was running wild. Her oncologist gave her the news and we expedited her return home with her daughter and husband and Hospice, her new team member.
Her bucket list got much shorter. She had a couple of good days and her family was at her side pretty much the whole time. Before her discharge she told me she worried about the strain on her husband and daughter and I told her they were strong and would be fine. She said, “but I have things to do.” I asked her where she would tell me to put my energy if I knew I was going to die the next day. She laughed. Oh how I loved her musical laugh. She said, “You give me perspective. And also, I really want my daughter to go on her trip.” I said, “That is not your choice.” She laughed. We both knew she would have said the same to me.
I thought she would live a week or three. And I hoped to visit her and maybe have the courage to say a proper good bye and to thank her for the days and nights we passed together in L&D and for trusting me with her care at this momentous time. She died quietly, 5 days after going home, with her family at her side. When there is a good team, maybe there is no good way and no need to say goodbye.
In the past I wrote about Hedgebrook. (radical hospitality) And I shared about the women who were there when I was. women writers And their cook book (here) is amazing, reminding me of the weight I gained during my residency in 2012. Well now it is time for YOU to apply for a residency. Check it out here! If granted, it is like nothing you will have ever had given to you. One constellation of six who were there when I was are pictured below, representing several nations, multiple genres, and huge heart. Also, throughout the year, they have master’s classes as well. For a weekend or longer, you will have your own little cottage, 5 other writers, solitude, amazing surroundings, and a master teacher. An 2011 article in the Guardian showed that in Britain and the US, male authors are reviewed 3 times more often than women. And guess what? Who do you think the reviewers are? Yes, similar proportions for reviewers: men: women 3:1. VIDA does an annual evaluation. In 2013 the NY Times and The Paris Review made big progress, but check out the tables. We still have a long way to go to have women’s voices heard in print. (VIDA) Hedgebrook supports women writers. In particular it wants to support women authoring change. My three weeks there in 2012 were life altering thanks to the vision of the place, the belief in the work I was/am doing, the amazing nurturing of the staff and the place, the women who were there with me, and the space to be there. Please do check it out: Go there for a master’s class. Apply for a residency. Support them. Go to their events.
Josephine Ensign wrote about Elizabeth Austen, her poetry and the event where she read. (see blogs I follow) Elizabeth is the Washington State Poet in Residence, truly gifted and a Hedgebrook Alum. Check out her blog and her work here. Go to one of her events.
Support women authors! Our voices matter. In the farmhouse at Hedgebrook, where we gather for dinner with our amazing chefs, there is a living room with floor to ceiling and wall to wall (except for the fireplace) bookshelves, all full. Every book in the shelves is by or includes a Hedgebrook alum. Let us work together to publish so much that we must support Hedgebrook building a new building or modifying some of their other buildings to house all the works of the women who pass through there.
Sitting in a coffee shop, I anxiously awaited one of my patients. I invited him to meet with me to read the story I wrote about what I learned within our working together over a period of more than 15 years with me as primary care provider AKA PCP and him as patient. But really, who taught whom and what? As editor and author, I am preparing to submit the manuscript for Heart Murmurs –What Patients Teach Their Doctors. All of the stories deserve permission from the patients who are described in the book; fewer than half can be reached to ask for this permission.
Some contacts were emotionally easy. There is a chapter on those whose cheery dispositions brighten our days in clinic. When I met with those patients and family members, they enjoyed that I wrote about them in this way. But what about the more challenging lessons? This was the concern as I waited that day in the coffee shop. His was a difficult story, a past experience for him, and a lasting lesson for me. I wondered if he would veto it being in the book. After arriving and some chatting, he read it. I sat there sweating. He said he loved it, and he added some ideas for changing the details that blinded the story. This is how all these meetings have gone: I am anxious and worried and our patients are gracious and grateful for the project, touched that they have taught us. And there is our respect to change what they need changed in the story telling.
Whose story is it? Of course, whether published or not, it is the perceptions (with all the bias implicit in perception) of the writer. On another level, when told it is the story of the teller and those about whom we storytellers write. In patient care, some argue that it is always the patient’s story. I am hoping to respect that view but to have a broader lens.
Reviewing stories with the individuals represented in them is an activity that adds to the relationships we have. One family member of a person who is deceased agreed with my perceptions and contributed details that were important and enriched the story. Several commented on how the story was accurate but that I left out details that were important to them. Often those had to do with what I did for them (much of which I do not remember and all of which was wonderful to hear, but not the focus of the stories). When reading a difficult narrative, several reached out to reassure me or another author. Each of the reviews went well, validating the project and our perceptions of reciprocity in these patient-doctor relationships. For me, what happened in the sharing of the stories supports my belief that this project is worthy for all, not just doctors.
Our physician authors also reviewed their narratives a year or so before publication; for many this review occurred a number of years after they wrote their stories. Older and more experienced, several commented that the revisit was a reminder of how they thought earlier in their career. They could see how they have changed as well as the characteristics that remain.
The ethics of patient protection has muddy waters. Strict rules do not quite fit. I do believe that when we meet with patients and have conversation about a written narrative, the relationship grows. The co-creation of stories can enhance relationships where patients have the agency and that makes sense to me. Doctors have written about their patients for centuries. Most of those writings, until very recently however, spoke to a culture where the patient was less of an equal partner in the physician-patient equation than what we currently believe and teach. Certainly, most of those years also preceded current privacy regulations. As recently as fifteen years ago, this subject was not routinely scrutinized. I have no idea where it will be ten years from now.
The emerging ethic about writing about our patients is not well defined. What can we say? What should we not say? Can we even do this writing? On the one hand, memoirs tell only one person’s perceptions. What should determine how a physician addresses this? In prior works, names and circumstances might be changed, but is that enough? Is there a line that is different when we are writing the story about a relationship that is defined by confidentiality?
At the same time that we ask these questions, medical education is clearly recognizing and supporting reflection by physicians. We teach it; we have reflections in our courses. Those of us attentive to this trend have also cautioned our learners, be they students or residents, about blogging and other social media outlets for sharing their reflections.
What are the answers? Others and I hope any answers encourage compassion and reflection in all of our healing professions. We hope the answers allow the story telling that is so central to our diagnostic and therapeutic work. However these ethics evolve, I hope that we can support stories being told, shared, and valued, while of course protecting the right of patients to their privacy in this very special relationship.
How do we reconcile these tensions in the best way we can?
In Heart Murmurs, the authors, including me, wrote about what they learned about themselves because of and within a relationship with a patient. We can’t tell that story without the story of the patient. I believe there is tremendous social value in this reflection and in it coming to the public domain. How then do we protect the covenant of confidentiality? Today I sit with a manuscript with over thirty authors and many stories of mine, over 80 total from all of us. Where I am settling, and I hope it is good for the mores of today, is the following:
All stories must meet several criteria:
- The value of telling the story is important to our social dialogue. The purpose of this project is one that meets this criteria for all the narratives included in the project.
- The story is told in a respectful way for each person represented. All stories, even those that have difficult circumstances, in this book are respectful, though I recognize how subjective perception is.
- If a person believes a story is about them, they should not feel embarrassed or shamed, also subjective and hard to predict in many cases.
All stories in Heart Murmurs have names and some circumstances altered, except for two where family explicitly approved using the actual name. I believe all included stories meet the above criteria. Patients of mine have read their piece and agreed to publication, or they are deceased and a family member read it and agreed to publication, or they are deceased and I could not find a family member for review, or it is a composite, or it is many years ago and I could not find the person to review the narrative.
If another physician contributor wanted to attach their name to their story one of the following criteria had to be be met:
- The author shared the narrative with their patient and the patient agreed to it being published; or
- The patient could not be found for sharing the story and the circumstances are altered for patient protection; or
- The patient is deceased and the author shared it with a family member who agreed that it can be published; or
- The patient is deceased and no family member is easily found or reachable and the story is generic enough that the identity seems reasonably protected; or
- The story is a composite and thus not attributable to one person; or
- The story is from a number of years ago and no one could be contacted and it is blinded enough so that identity seems reasonably protected from any but possibly the patient.
If one of these six criteria was not met, a story will say “anonymous” and the author can have a biographical note if they wish. For stories with an anonymous author, with circumstances changed, and with the authors being from all over the country, I believe patients’ identities are reasonably protected. Even if a person or a family member reads the book and identifies with the circumstances in a story and wonders, their identity should be protected from others. No persons should be certain it is really about them. What I also know: the lessons in every narrative in this book have been experienced in one way or another by individuals and their physicians all over our country.
Sometimes those fragments of time that occur in the cracks between the “regular” stuff of scheduled life are so full that there is no time to even contemplate a blog entry. There are simply no moments left.
We hope we can appreciate the meaning of what is happening in those cracks. And then there is “now, back to our regularly scheduled show.” This site just fell off the shelf for a bit.
Here is the big news: we have a publisher for our manuscript of narratives by physicians (and me as editor/author) sharing how we have been affected and changed in our relationships with patients. This is work I have been doing for years and compiling/editing for over 4 years. That’s one reason for no blog: trying to bring us and it together to get the manuscript in. That means: I need from each contributor three things: their bio, is their story blinded adequately, and do they want their name attached or to be anonymous? Simple no? Not! Of the 30+, I still need to track down 5. Then I need a permission slip signed by each. I may need to appear in person on doorsteps all over the country to get it done.
I need to complete the editing and proofreading, find some sample cover images, get a head shot (of me), a short statement for the back cover, proofread the bios, maybe write an epilogue.
And anyone have friends who are famous who will look at the manuscript and write an endorsement for the back cover? I wrote to Gawande, Verghese, and Remen and they did not respond…next? One of my sons says, “Ask em again.”
My time to edit and herd contributors is cut short by other moments that I can’t just ignore, as excited as I am that this work may actually see print.
Life happens. The book is all about relationships. I simply cannot shelve them while trying to make the book happen.
I am meeting with the patients about whom I have written and if they are deceased, I am sharing the stories with their family members -if I can find them. This is a process that is full of meaning for me, for the few other authors who are also contacting the subjects of their pieces, and hopefully for the people we are contacting.
Before each meeting, I feel anxious about sharing what I wrote. How accurate are my perceptions and descriptions? What will my writing bring up for the person (or family member) about whom I wrote. The narrative is really about what I learned about me in the context of that relationship, however that means telling the patient’s story. Funny, but revealing my lesson does not leave me feeling vulnerable. Instead, I am most concerned how they feel I represented them or their family member, because our connection in reality is just a small bit of who they are or their life story. So far, and I only have three more people to meet, no one has had big concerns; all have had things to share that either enrich the story or give back to me. I will try to write this piece in an epilogue, but doubt I can do it justice. There is a ripple effect when we are authentic about this reciprocity piece in relationships. Moments…they can build on themselves like waves.
So many layers.
It always amazes me how we bring many lenses to any situation and these are how we see the world. Some, well maybe most of us, have several lenses, or maybe should. What do you think? Which lens rises to the top depends on so many things.
In the story of today, shall we look at this through the just get the person to safety lens? How about the really weird, as in I can hardly believe I felt this and though it cannot be close, here I am, standing in another’s shoes lens? Or the health-care system, it really can be better lens?
Or all of the above. They all fit for me. I like the notion of multiple views.
It was a busy week back at the ranch, er job: several evening events, a night on call, but no matter. I had made plans to take Friday off and even arranged coverage for Monday; we were going to the snow, heading for Canada. “We” would be my neighbors and me. They drive, I have the housing arranged: me in one room, their daughters in the other, the parents in the living room. A close friend’s daughter with a season pass wanted to come too and she could sleep in my room. All set.
Then my friend, mom of the kid who would be my room mate, decided to rent a place in the same building and come as well with another friend of ours. All good….except she was tired and it was a long week and she was ambivalent. Her daughter and I both talked with her, and in the end she decided to come.
Thursday evening we all (including my friend’s husband) were at a fund raising dinner, and all seemed ready for the next day. I arose Friday, packed, and my neighbors and I hit the road. Many hours later my friend, her daughter, and our other friend arrived. My friend did not feel well, was nauseated and had abdominal pain all day. She had not eaten since the night before.
Saturday morning it seemed clear that my friend needed to be seen at the clinic. She, our mutual friend, and I (all family medicine doctors) feared appendicitis. While my neighbors, my friend’s daughter, and I went to ski, the other two went to the clinic. By lunch, we knew. Her daughter and I headed down the mountain: appendicitis.
We were in a location with no hospital. We knew the ones along the way from there to Seattle. Her husband was not with us because he had been on call, but had gotten sleep and was able to drive to the border and meet us. We knew there were surgeons in Squamish, then Vancouver, then Bellingham, then Everett, hoping to get her to Seattle.
The punch line is that she did get to Seattle, had her surgery around midnight Saturday night, and was home Sunday evening.
But that in not the point of this post.
I mentioned three lenses above.
Get her to safety: Who should go, where to go, who helped us know? We had many possibilities. Who should go? Should her daughter drive her to Seattle? What if she got sicker along the route and a doctor was not with her? How luxurious that there were two other doctors along. And who should go?
Stand in shoes: The two doctor friends (Diane and me) decided to drive her to the border. Had we crossed the border, the wait to go north was close to two hours. We did not want her husband driving across. And she did not want us crossing to deliver her and face that wait. We opted to park at the Canadian border, talk to the guards, walk to the US border (about an 8 minute walk, in the pouring rain, our friend doubled over, us carrying her bags), talk to a US guard who by cell phone instructed her husband how to get to us without getting in the 90 min line, and delivered our friend to her husband. Something hit all three of us, only shared after the fact. What we felt walking across, pouring rain, was a sense of vulnerability. It was a trek.
Although we knew we had what we needed to get our friend across to the USA and us back into Canada, we were nervous and vulnerable. How is it for others for whom the border cross has even higher stakes ?
We stood in line at the US station for pedestrians. There were border patrol folks milling around. It looked like they were not attentive to the lines and were not doing work. We stood there. Our friend was getting more and more hunched over. We were scared. How much time did she have until she ruptured that appendix? Finally we asked for help. The guard heard us and did help and a few minutes later our friend was on her way south and we two others were trudging back to Canada.
What do others feel in that walk between borders? Really, we all knew ours was only 8 min between the two borders in that nomad’s land and yet each of us silently felt that anxt: what if it does not go well? We all have enough life experience to know that what we felt had to be, given the certainty of our getting across, just a tiny fraction of what many millions feel when crossing a border under duress.
And the health care system: Our friend had lab results and CT scan that showed the appendicitis. We had seen the monetary charges: they were half what they would be in the good old USA. Yet people complain about single payor. Really?
OK, once we handed her over to her husband, they were in the good ol USA. One hospital/ surgeon on call would require she go to the ER. Even if they accepted the CT scan and labs, there is that charge on top. (and by the way, there would be the delay and risk of rupture) A second hospital/surgeon would admit her straight to a room and then the OR. Guess which was chosen? Surgery that night, home the next day.
Patients or money first?
What do you see in this story