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Don’t Wait Blog
Care for Seriously Ill Patients. Looking Back and Looking ahead at the Role of Hospice and Palliative Care in an Evolving Health Care System
So! I started to think about the future and my personal role and responsibility in shaping my own future and the future of the Hospice and Palliative care program where I have been working for the past 13 years. Being over 65 and part of the infamous Baby Boomer generation, I thought it was appropriate for there to be a succession plan/exit strategy for both myself and my organization. I could wait until something happens to me and I can no longer be effective or wait until someone else comes to tell me that I am no longer effective – both seemed equally bad ideas. However, I am not really ready to retire [and my wife correctly believes that I would not last 2 days without something to do]. So? What to do? As of July 1, 2019 I am officially the former Chairman of the Department of Palliative and Supportive Care. I am a full time Hospice Medical Director, which is coming full circle to how this all began some 20 years ago when I left Family Practice. As I began to consider this process I realized that this was a life journey with all of the expected emotional attachments – including fear, grief and excitement. I also remembered several important messages that I have received over the years. Frank Ostaseski, one of the founder’s of the Zen Hospice Project in San Francisco and a wonderful Buddhist teacher has promoted his 5 precepts for being with the dying [excellently discussed in his book – The Five Invitations] which have been very meaningful to me and which I have incorporated into much of my own teaching and work [undying gratitude and respect to Frank]. Something that we help hospice and palliative care patients/clients with all of the time is the concept of Don’t Wait – if it is important do it now. Another and equally important and powerful message came from Phillip Rodgers MD who is the Director of Palliative Care at the University of Michigan. During a speech he gave while accepting an award from AAHPM he reminded us that we have accomplished what we have by showing up and showing up and showing up and showing up and showing up and showing up and then standing up and now speaking up. I have wrapped all of this into a project called the Don’t Wait Tour. Starting on the 2nd of September I will be riding my bicycle around our wonderful state. My intent is multiple: spend some time away from work, ride my bicycle on new roads, raise awareness about hospice and palliative care and remind everyone – Don’t Wait. PHPCN has been a wonderful partner for me and for all of us across the state and has embraced this project with open arms. This is the first installment along this journey which I plan to share with all who are interested. We will be highlighting the route and the planned stops and lectures/events along the way. I am asking for all of you to show up and stand up and speak up in support of hospice and palliative care for all people with serious illness. Don’t Wait. Come on and join the Journey.
So, this sounds a little like a mid-life crisis thing [though I am past midlife], but it is more complicated. Which may be part of the problem – making it more complicated than it needs to be. When I formalized in my mind that it was time to begin formulating a succession plan and exit strategy, I wanted to be mindful of myself and of the program that I had developed and of the organization that supported me in developing a fully sustainable Palliative Care program. I am aware that my name has become attached to Palliative Care in my organization which could make it difficult and/or uncomfortable for those taking over. If I am not so visible then everyone else has the opportunity to make their own place. Also, I have never taken a month off from work in 40 years [actually never] and it seemed like a good opportunity for myself to have a break and then come back and start a new role as well as providing a space for the rest of the team. Climbing Mt Everest is almost a cliché [also very crowded and very expensive] and that fantasy has past. I thought about riding across the United States but that would be expensive and take more time. Riding around the state seemed like a reasonable alternative to meet multiple layers of needs. I ride, I own a decent bike [actually several] no big deal, right? It could be an opportunity to get some exposure and raise awareness and conversation about Hospice and Palliative Care and the people who are committed to the work. So, I floated the idea and people seemed to have some spark of interest – great, lets do this! The reality of getting in the proper condition when you can only ride on weekends [that you are not working] and you are 67 has been a little sobering – and painful. Despite some mishaps along the way [some very odd like a spontaneous saphenous vein thrombosis; some self-inflicted] I am currently able to spend over 6 hours on my bicycle seat. Saturday I rode 73 miles and Sunday I rode 49 miles. Definite progress toward my goal of being able to ride 60 miles in 5 hours, which is 12 mph. The plan is to break the trip up into doable legs of 40 to 70 miles, with a stop at night to recover. The other logistical issue was how to get “gear” along with me – clothes, tooth brush, inner tubes and extra tires, back-up bicycle, computer [since some people expect me to be blogging along the way]. For this part, I am going to rely on the kindness of strangers. Every stop will be arranged around a local Hospice program and we will look for photo opportunities to highlight the local program and people and ask that someone transport the gear to the next stop along the way. I am hoping that this is taken as a way to be involved and to carry the project forward. I also want to shine a light on all of you who are doing this work across our state – put faces and names to programs. We will be trying to get local media outlets to become involved as well. Don’t wait to tell your story and put your program on the map [and we will be creating both a real and a virtual map, I will be putting routes out in advance and I have an app on my phone that will allow some of my sponsors to follow exactly where on that map I am].
Another interesting piece of this whole puzzle is the concern that people have for me about this ride. I get the sense that some feel I am taking excessive risks and/or that I am being cavalier about the risks associated with riding a bicycle alone around the state. In some ways I am obviously taking a risk – I have several friends who have had serious injuries while out riding and I have had my own adventures with falls and near misses. So it is not that I am being naïve. Actually, the risk is part of the reason why I want to do this. Not risk from a thrill seeking perspective as much as from a growth perspective. Acknowledging risk and the associated fear and then being able to face it and go ahead and do the thing that seems scary anyway. Know the risks and dangers, honestly assess your own capabilities, clearly understand where the line of unacceptable danger is and then face the fear and push as close to that line as you can. A calculated and thoughtful approach to risk is something that is imbedded in everything that I do: rock climbing, ice climbing [which may have pushed the limits of calculated risk], winter backpacking, skiing and work. Work?! How and Why would work be risky/scary.
The work that we do in Hospice and Palliative Care is risky and scary. It is intimate work, for them and for us. I often quote teachings from Frank Ostaseski the co-founder of the Zen Hospice Project in San Francisco who I view as a true teacher and guide. One of his precepts is: bring your whole self to the experience. We must be able to be with another human being in the midst of their suffering, often without trying to fix it and to do this we must open ourselves fully to our own suffering. We must be vulnerable. This is risky and scary and we do it anyway. In facing the suffering of others and in facing our own fears we grow. We grow as end of life providers. We grow in empathy. We grow as human beings. Don’t Wait to look at yourself in the mirror, a mirror that will show all of who you are. Acknowledge your fears and uncertainties, embrace them and carry them with you into the fire of another’s suffering and be present to honor them and yourself.
All journey’s begin somewhere, though often well before the obvious starting point, and sometimes completely unknown. As a third year medical student I stood at the end of her bed in my short white coat and, all alone (she AND I), told her she had lung cancer [primary bronchogenic squamous cell carcinoma of the right upper lobe with a large cavitary lesion making for a very interesting X-ray]. She never said a word. She simply and quietly pulled the sheet completely over her head. Daily rounds moved further and further away from her bedside until we simply stood and talked in the hallway outside. No one ever debriefed any of this with me and I am sure no one ever talked with her about how she felt and what this meant. 43 years later I can still see her face. She needed and deserved so much more than I knew to give! I am still sad. A few years later, I was the senior Family Medicine Resident covering the office clinic when I met another woman. She had come from Long Island to Bryn Mawr to visit her daughter when she turned yellow. Painless Jaundice! Pancreatic Cancer! We sat and talked again after the tests were back and she was very clear: quality and family over time! No Whipple. No chemotherapy. She moved in with her daughter and we initiated this new approach to care called hospice – my first experience. She died comfortably at home with her family. 2 weeks later her daughter called the Family Medicine office and asked that I make a home visit!? Her mother had used her time and made all of the preparations for her death that were important to her, including directing her daughter to purchase a Waterford Crystal bowl and present it to me after her death. I still have that bowl and still feel the power of that relationship – likely the first step of this ultimate journey. That second patient left a permanent, powerful and positive imprint, and certainly seems to be a clear first step toward an eventual career in Hospice and Palliative Care. However, was the first encounter, equally long lasting and powerful but very negative the experience that opened me up to what I really needed to know – the true first step!?
Years later I am in private practice in Family Medicine in Quakertown with two partners when one of the nurses at our local hospital tells me she would like to start a hospice program. I dove in and was a volunteer co-medical director. I read the CoP’s and helped write policies. We did IDG and made home visits. It was small, but I was a Hospice Doc! I was still in practice but able to do this as well. The program was small and lost money and eventually the administration decided to end the program. One of the nurses was approached by a for-profit Hospice Provider wanting to start an office in Allentown and needed a part-time Medical Director. We held IDG meetings in the break room of my office initially. That program grew and they needed at least a half-time Physician. I had to take a hard look at my own goals and values as well as my practice and my partners. We talked and they agreed to support me in doing half time Hospice and half time Practice [the hospice program paid for my time/services directly to the practice]. It turns out to be much harder than I expected to do two separate jobs equally and well and only Half time. In truth, to be a good Doc for either side I needed to be fully invested. I always felt pulled apart trying to do both. So when they came and asked if I would consider full time as Hospice Medical Director I had to really look at what was important. Don’t Wait!?! I liked Family Practice and I believe I was a good Family Doctor. I felt really called to be doing Hospice. To be able to relieve suffering and offer peace and comfort [at least most of the time] seemed to be where I was supposed to be. So I made the difficult transition and became a full time Hospice Medical Director. I have never looked back and have never doubted that decision. It has given me the opportunity to do something I am passionate about and am reasonably good at – very fortunate. Then an opportunity opened at St.Luke’s for a Hospice Medical Director – a solid program with an inpatient facility [and a brand new one to be opened] and long standing commitment to the community and significant opportunities for teaching. Also, as it turned out, a serious interest in exploring a Palliative Care Program – Sold!
When you are the only doctor in the family, you are the family doctor! Also, even at 67 my mother still introduces me as “My son the Doctor” – I still blush, but I understand her pride. So back to being the family doctor! I diagnosed my uncle’s colon cancer while still in private practice and then was able to offer input and care as he transitioned to hospice care. When one of my cousin’s called and asked for help with his mother, my aunt, I was able to coordinate the initiation of hospice care at home and she was able to die comfortably with her family at her bedside. My father was 71 when he was diagnosed with esophageal cancer and his journey has been instrumental in framing my own views on Palliative Care, Hospice and our Health Care System – good and bad. He had adenocarcinoma of the lower third of the esophagus. He was scheduled for surgery – without any family meeting or discussion of options [was surgery the ideal approach? what were the alternatives? what was the prognosis? – I knew these things but I am very sure that my father did not know what to ask and so he was essentially told what he should do]. Surgery was much longer than expected because, not surprising with esophageal cancer, the resection margins showed residual tumor and further resection was needed. Surgery was followed by radiation and chemotherapy. Again, there was no family involvement in the discussions with the Radiation Oncologist. Also, he was never offered a palliative care consult or referral [since the surgery was curative!]. I was invited to the initial meeting with the Medical Oncologist – a classic study in how NOT to communicate difficult information. The very professional doctor talked directly to me [knowing I am a physician], not to my father or my mother. He very effectively told us what treatment plan he was going to undertake. There was no discussion of my father’s goals or values. And there was no recommendation for palliative care. Afterward, my father reported understanding that he had cancer and they were going to treat it with chemotherapy and radiation. The treatments [traction at the anastomosis, radiation esophagitis] resulted in serious dysphagia! A real blow to my father’s definition of quality of life – sitting with the family at Thanksgiving and choking/aspirating on almost every bite! How did this all happen? I was a practicing Hospice Physician [for a Private and For-Profit Company] and a Practicing Family Physician?!
Sorry for the gap, it was suggested that each of these posts be short, so I left things hanging. Maybe just to let the image of those encounters settle. Being on the “patient” side is a different perspective and even more difficult when you are dancing a fine line between advocating for what you believe should be done and what the patient [your father] wants to navigate for himself. Not surprising that there were multiple layers at play. My parents were separated though amicable and supportive of each other, but did not live together and my father had “friends” who were giving him advice. He later acknowledged that he hated chemotherapy but did it because he thought we would all want him to. He lived alone and continued to drive and to restore his house. When he called me [being the doctor in the family] complaining of substernal chest pressure and squeezing sensation and would I come; I told him to take an aspirin and I was on my way [he would not call an ambulance]. I took him to the hospital where his cancer doctors were [not to the hospital system that I worked more closely with] because I thought that would be better care. His angina improved with IV nitroglycerin but every time he tried to get up he became syncopal. The cardiology team met at the nursing station [not in his room] with me and knowing that I was his son and a physician. They acknowledged that he had active angina due to coronary artery occlusive disease and that a cardiac cath was indicated. However, he has esophageal cancer so why should we do the cath?? No discussion with the patient about his goals and understanding of the situation!!! After I pointed out the impossible situation that he was currently in – either continuous angina just waiting for an MI or needing to be prone while on nitroglycerin!?! [And still no consideration for palliative care], they agreed to proceed with a cardiac catheterization. They did indeed find 2 obstructed coronary branches and stented one of them [because he has esophageal cancer they only did the one that looked the worst]. Surprisingly, his angina continued and he continued to require nitroglycerin and he ended up with a second procedure to stent the other vessel. Everyone projected what he should have without ever asking what was important [being able to go home and continue to hang out of his third floor window to scrape the paint on his house]. Yikes!!! On discharge I took him home and asked him to be careful, knowing that he was going to do what he wanted to do.
The reasons for telling this whole story will eventually become clear and make some sense, hopefully. When he coughed up blood [we are still following my father’s story] he called me first. This time we talked about what it likely meant and what he wanted to do. A CT showed a lesion in his right apex. Biopsy was recommended and then more chemotherapy. Alone, he asked “do I have to do any more Chemotherapy?”. No, Dad, you don’t have to do anything that you don’t want to do. We talked about what he wanted and how we could make it happen. He wanted to be able to stay in his home as long as he could. He did not want to get a biopsy or go to the hospital. He was going to continue to drive and work on his house. He understood that he was going to die and just did not want to suffer. We started hospice and he agreed that when the time came he would come live with us. He managed to stay at home longer than the hospice nurses were comfortable with and managed not to fall out of his third floor window. Finally we sat in his kitchen and agreed that it was time for him to come to our house. We set up a bed for him in one of the kids’ rooms [our oldest was in college at that time]. His brothers came and stayed with him during the day. We arranged a visitation schedule so that his “friends” could come at times that my mother was not there. He smoked and ate and drank [mostly brandy] what he could and wanted. When it was clear that time was running out my wife and I and my mother and my youngest brother and his wife and daughter and my step daughter all stood around his bed. My youngest son and my step son [blended family, Matthew and Tyler are 1 month apart and have been friends since pre-K] were given the option of what they wanted/could do and they were off with friends. The girls read poems to dad that they had written. The adults passed around his bottle of brandy. He had smiled at the girls and then closed his eyes and did not respond. Then he suddenly opened his eyes and looked at each one of us and said “take care of each other” and goodbye. He died a good death, on his terms, exactly how he wanted it to be. I had always thought that what I did as a hospice team member was worthwhile – now I knew for sure. This was my muse and my certainty about the why of it all. Don’t Wait. Tom didn’t and it was right for him and for his family. I do this ride in memory of Tom and Fred and Martha, and all of the other patients with whom I have had the privilege of sharing a part of the story and the journey with. Each one special and important.
Journeys, as with life in general, are rarely linear and usually more about the process than the outcome (the journey itself more than the destination). This journey will certainly fit that description – in physical reality and in the telling. While I ride mostly back country roads (a favorite day of riding has always been one where we come upon a road we have never ridden before and just decide to see where it goes) and always end up at my destination, I often meander quite a bit. Not surprising then that one of my favorite poems is The Road Not Taken by Robert Frost. So too, this journaling process will likely meander through the “stories” that I have accumulated/witnessed/ been a party to. Each story with a lesson – often unexpected.
The social worker came and asked if I would make a home visit. The priest was requiring a letter from a physician indicating that the patient was competent before he would agree to the marriage!?! [I will avoid any judgmental comments about the priest…]. She was 27 years old and lived with the father of their three children [the youngest was 9 months]. She was on hospice with recurrent and progressive squamous cell carcinoma of the left maxillary sinus and wanted to marry to be able to assure that her children were all cared for [sounded pretty competent to me; sorry, I really was angry with the priest]. Treatment had left her with almost complete right hemiparesis – no use of her right arm or leg. This created a real difficulty with a 9 month old wanting to be picked up and held by mommy. They had no insurance. When she developed a dental abscess and the pain did not respond as well to the opiates she used for her cancer pain, everyone felt very stuck. With no insurance and little resources she could not afford to go to the dentist. We were able to arrange for her to go to the free dental clinic, 6 weeks in the future. They asked if I would make another home visit and consider acupuncture [along my journey I had become a licensed physician acupuncturist; another road less traveled by!]. The acupuncture worked for the pain and after three treatments she was pain free and was able to get to the clinic. The dental clinic does not do extractions and you can’t get to the oral surgeon without being seen in the clinic… so the next appointment was going to be another 3-4 weeks in the future. She asked if I could come one more time and do the acupuncture so that the pain would not come back before she could get her tooth pulled. I went to her house and repeated the acupuncture treatment. When I finished and removed the needles, she stood up and offered her right hand to shake and say thank you. I can not explain why she recovered use of her right hand and enough use of her leg to do pivot transfers [the Chinese would be able to explain how my acupuncture treatment unblocked and rebalanced her Qi]. She was able to pick up her child and able to go to the Mall!! In retrospect I owe that priest gratitude for presenting me with this opportunity.
Maybe we should start at the beginning? My name is Ric, not Richard and no K. Ric Alan Baxter [you would have to ask my mother the where and why of my name; I do know that “Ric” was a constant source of conflict in the Allentown Public School System – No nicknames Mr. Baxter! This from Hannah Brown my 7th grade science teacher, wearing her perpetual green sport coat. She required me to bring in my birth certificate and then proceeded to pointedly address me as Richard all year. The year and the class I was in when JFK was shot! She will forever remain in infamy!!]. Also known as Dr. Baxter – something that I am exceedingly proud of! Ric A. Baxter MD FAAHPM, Board Certified in Family Medicine and in Hospice and Palliative Medicine, Fellow of the Academy of Hospice and Palliative Medicine.
I did not set out to be a Doctor. I certainly had no role models in my family for being a Doctor. That I was going to college was never in question and never in discussion – what I would be was also never really discussed, just sort of left to me to figure out. An early influence was my Uncle Budge, my father’s older brother who was a Chemical Engineer and a Senior Vice President of Allied Chemical Corporation. So off I went to be a Chemical Engineer [of note is the meeting with my high school guidance counselor who thought I was being ridiculous in selecting my major and I would certainly flunk out!?!]. Turns out she was sort of right! I did not flunk out [actually did well], but I did figure out that I really liked chemistry not engineering. I could have continued in my Uncle’s footsteps [certainly pleasing my family] or be my own person…two roads diverging. Don’t wait! Dr. George Jones was my Physical Chemistry Professor and when I went to talk about transferring from ChemE to Chemistry he asked “What do you want to do with it?” I did not realize at that time that this was a goals of care question. What did I want to do? Research? Honestly I was not a very good researcher. Helping people! Medical School! Trust me going to Medical School from Clarkson was definitely taking the road less traveled. Some days it wasn’t even a road. It clearly has made all the difference. One of my few regrets is never having the opportunity to go back and thank Dr. Jones who died while I was in Medical Training.
At some point I am going to have to talk about Sam. Her mother would like that [and gave me permission and all of Sam’s records to tell Sam’s story]. I met Sam in consult for pain management. Just to provide the context for this, I should explain how I got to be doing pain management consults in the hospital. By this time I was actively doing Palliative Care consults in the hospital and doing a significant amount or pain and symptom management for those patients that I was consulted on – often cancer patients. I worked well with several of the pharmacists and we had developed policies and procedures for some off label use for ketamine and lidocaine for complex pain issues, along with credibility for expertise in difficult pain issues including use of high dose opiates and methadone where appropriate. Somewhere along the line the Pain Management Doctor for the Hospital gave sudden short notice of his plan to leave the hospital practice…the VPMA asked if I would cover, just for 3 months…[another story and another road that got way too much travel]. So I was consulted to see Sam for uncontrolled pain. Bring your whole self to the experience, is another of Frank Ostaseski’s precepts and I really needed to do that with Sam. She demanded a holistic approach and an open mind – without judgement or agenda.
Sam was from Alaska and loved to fish for Salmon with her mother. In 2010, when I first met her, she had not been able to go back to Alaska for many years due to her pain and care needs. She had been diagnosed with RSD of the right foot with full body generalization. She had intractable pain requiring complex pain management including lots of off-label approaches such as iv ketamine and oral ketamine and mexiletine , etc. She used large amounts of opiates with an undercurrent of concern about safety and efficacy and appropriateness. She was judged and labeled and avoided by most of the Health Care System. Her mother was her unwavering advocate, defender, supporter and cheerleader – who was also judged and labeled and avoided because everyone felt uncomfortable [forgetting she was being a mother for her daughter in a world that did not seem to care]. While it seemed easier for some people to brush off RSD as not being real and just an excuse for seeking pain medication, when Sam was diagnosed with Sarcoidosis of the lungs and liver [and eventually her CNS and likely her heart] the idea that this was some variant of Munchhausen’s Syndrome or Munchhausen’s by Proxy was completely indefensible. Sam had an intractable level of suffering from conditions that defied any attempts at cure or control. She was isolated, scared, angry, defensive – a “kid” with no future. When she had a PEA arrest and the concern for cardiac Sarcoid was raised – she started to talk about the end of her life. she was never suicidal, but she did want input and self participation in decisions regarding her care and her future. When she came in with a respiratory rate near 60 and required intubation and propofol, it was time to have direct conversation. Sam was very clear – no more! Mom was not so clear and Sam needed support to be able to tell/ask Mom for support and to let go. Sam died at age 29, finally at peace with much of her family at her side. Sam needed a village and at the center of that village was always palliative care [an entire team].
There is more to say about Sam and I will get back to her story and what she had to teach. Telling Sam’s story reminded me that I will also need to tell about Sage. This will be the hardest one to write [and for anyone who knew Sage, may be the hardest one to read]. Sage was serious pain relief! He made everyone a believer in Pet Therapy [a patient in our inpatient hospice facility with stage 4 cancer and intractable pain that was not controlled with continuous IV opiates got so much relief while petting Sage that the family sent the nurse to find me – “Doctor you have to come and see this”]. Sage also reminded me of the depth of pain of grief when he died of cancer 5 years ago.
Sage was a member of the family. He was a member of the team – Hospice and Palliative Care. Sage was a Golden Retriever – not a pretty show dog, but a great dog. He swam like an otter and swam just for the joy of it. He cared about people and would have no interest in other dogs or squirrels or deer. Martha, my wife, would take him as a therapy dog for sessions with kids and teenagers [even an angry teenager would open up with Sage’s head in their lap]. Sage was the Hospice House therapy dog on weekends and would make home visits and would come and do consults in the hospital with me. He would very quietly come up and lean gently into your legs and put his head in your lap and just let you pet him – and now we can talk about the worst thing that could possibly happen and how we will provide comfort for your husband after we withdraw the ventilator. Bring your whole self to the experience and Sage did that always, teaching everyone to be fully in the moment and to simply enjoy what you had right there in front of you.
I have a card in my office that someone gave me years ago. It says: “The world is a better place because of those who refuse to believe they can’t fly”. I always remember Sage running down the dock and leaping fully stretched out into the lake – flying. He climbed the stairs up onto the dock and up onto the float in the lake because the kids did and we never told him he was a dog and couldn’t do that.
I started as a surgeon [my internship was a general surgical internship at the Naval Regional Medical Center in San Diego, I liked surgery and it seemed to be the most useful skill set for being a navy doctor on a big gray boat – USS Simon Lake] and landed in Family Medicine [Residency in Bryn Mawr and practice in Quakertown, Upper Bucks Family Medical Center] until coming into fulltime Hospice and Palliative Care. That is the preamble for my personal disclaimer about Hospice and Palliative Care/Medicine. I believe that they belong together! I fully understand that they are not the same thing and that many, if not most, clinicians are either Hospice or Palliative Care. Hospice is our well defined Medicare Benefit with its CoP’s. Hospice acknowledges death as the outcome of the process and seeks to provide a “good death” as defined by the patient – even while we are telling every one that Hospice is about living as well as you can until you die and about quality of life. All of the care we provide in hospice is palliative care, and, at its best palliative care is modeled after the hospice model of true multidisciplinary and holistic team care. People are frequently uncomfortable with talking about death and dying and often don’t want to consider hospice “until they really need it”. However, patient and family satisfaction with actual hospice services are almost universally excellent. We get hung up on the words and what meaning we have assigned to them. While I may not want to die, I almost certainly do not want to suffer. Death is sad, it is loss and it is grief. Living [with serious and advanced illness] may be associated with intractable suffering. We can want both – to not die but to not suffer, and then be able to decide that not suffering is more important for ourselves and for our family.
This is the often gray and ambiguous world of palliative care – anticipation, prevention and treatment to relieve suffering at all points in the trajectory of illness. Sometimes it is focused on helping someone to be able to continue treatments or to continue to work while undergoing treatments. In other situations we may be asked to help define and establish “goals of care”, which often includes helping everyone to be clear about whose goals we are talking about. When the goals of the patient are different from the goals of the family and different from the goals of the providers we may find ourselves in the role of mediator. At best we have no agenda and no focus on the outcome, allowing us to remain present in the midst of another human beings suffering and to be able to ask the question: How do you see this going? And How can I help you? Allowing us to be open to hear where they are and what they need – sometimes reaching into our tool bag and pulling out some options; sometimes simply validating their reality, but always being present.
As we stood alone in the ICU at the foot of her young husband’s bed with only the sound of the ventilator and the monitor, she turned and looked at me and said “I will remember this day always and I will remember your face”. She was a young woman from Egypt with two very small children and a husband who had come to Pennsylvania for work. He had a brother locally. All of her family was in Egypt. He had stage 4 malignant melanoma and had progressed to brain metastases despite treatment. We had had an extensive family meeting with both of them and her brother-in-law and had agreed on home hospice which would be arranged for the following day. Overnight he had a major change becoming unresponsive and in acute respiratory distress. He had hemorrhaged into one of the metastatic lesions in his brain with swelling and Uncal herniation. His brother had made the decision to have him intubated and placed on a ventilator [a very strict Muslim family and the brother was the leading male present]. He was clearly not a surgical candidate and his prognosis for any recovery was grim. We had had another family meeting and the wife requested that he be extubated and provided with comfort care and peaceful dying. She asked for some time to say goodbye and so she had come into his ICU room. I knew she had no family present and no support system present and no local Imam… I knew she was alone. I quietly came into the room simply for support and presence, to witness and acknowledge the depth of her loss and sorrow and suffering. Sometimes the hardest and, yet, most important tool that we have to offer is to simply be a presence.
Sam [my young patient and “teacher”] exemplified to me the benefits of an integrated Hospice and Palliative Care Program allowing for continuity of her care across all venues [even across multiple state lines] and between all providers. She was complicated medically, emotionally, socially and even spiritually. She reminded me often that it was the most vulnerable of people who need/benefit the most from palliative care – looking at the whole person and her self-defined system of support [“family”]. I also have to remember that as a palliative care provider I have a skewed view of the health care system – seeing a higher percentage of those that are not responding to treatment, who have aggressive disease, who lack supports and resources, who are “difficult” and/or “non-compliant”, who are in “denial”, who have behavioral health issues, who are suffering. We do not generally get to see those people who are doing well, who are responding to treatment, so it is easy to feel like the system does not work. The system did not work for Sam and her mother. In spite of the multiple obstacles, we were able to have a clear sense of her goals. With collaboration and creativity she was able to spend two consecutive summers back home in Alaska. As her sarcoid progressed and she developed increasing complications [avascular necrosis of the left talus and both femoral heads], her goals shifted. When her sarcoid became overwhelming, she began planning for her end of life with journaling and letters to her siblings. Because of the long relationship established with palliative care, we clearly understood the depth and intractable nature of her suffering. Admitting her to inpatient hospice and initiating palliative sedation to provide relief for that suffering was the natural and unanimous decision regarding the only reasonable plan of care to meet her own personal goals.
The system does not work well for some people and it has always been particularly hard and sad to know that someone will die of treatable disease, especially when they are not directly choosing to die. Sam chose to die, as opposed to more prolonged suffering. The treatment options left available to her were unacceptable and would only serve to add additional pain and suffering and prolong her dying. Not everyone can make those kinds of clear choices. Arthur Frank, PhD, is a sociologist at the University of Calgary. In his book The Wounded StoryTeller , he describes three patient types using narrative style as a vehicle for understanding. He describes a Chaos narrative. Individuals who have always been ill, are ill now and will always be ill. They see no hope for getting better. They are often labeled as difficult patients. Their life is one of chaos and a primary issue is the inability to tell their story – or to have their story heard. What they want/need most is to have their story be told and heard and accepted and understood. This sounds confusing and contradictory so let me tell some stories to try to highlight what I mean.
I met JR the first time when he was admitted for cellulitis associated with skin popping heroin. He had significant pain and there was real concern for withdrawal. He denied having any problem with substance abuse or addiction and had no interest in anything that I was willing to offer [such as methadone, substance abuse counseling, detox and rehab, etc]. He left the hospital AMA as soon as his arm started to improve and it was clear that we were not giving him IV Dilaudid. I met him the second time when he was hospitalized with rectal bleeding. He was still positive for heroin on his drug screen only this time he did not deny using. He appeared significantly older [appears older than stated age] and was legitimately scared. He had colon cancer and a mass in his liver. This time he agreed to try the methadone I offered for his pain and it was effective. He was discharged with a prescription for one weeks worth of methadone and follow-up appointments for palliative care clinic and for the oncologist. He was readmitted several weeks later, again positive for heroin [and again freely acknowledging his use]. He had not made either appointment. He reported that the methadone had continued to be helpful but when he ran out he did not know what else to do for his pain so he went back to heroin. He was scared and tired. He wanted to live and he wanted to treat his cancer. Why did he not come to his appointments? He was homeless and completely illiterate. We did not know because he was trying so hard to be a good patient that he smiled and nodded that he understood everything. So we gave him a 1 week prescription for methadone and we told him: “Come to the clinic on Tuesday”. “When on Tuesday?” “Come any time before 5 PM”.
For the next 2 years he came to the office every Tuesday about 11 AM. He got his 1 week prescription for his methadone. I am very sure that he never again used heroin. The palliative care office made sure that we knew when all of his appointments for oncology and testing and infusion were and then we would make sure he knew where to be when and he never missed. We eventually found a daughter who was literate and willing to be involved and she would coordinate his appointments. He did well until his cancer progressed and he became too weak to tolerate any more treatment. He ended up in our inpatient hospice facility and much of his family, who had been estranged because of his drug use, came to visit and say good-bye. He died as well as it was possible for him. He was able to get treatment but only with coordinated care and assistance – it took a village that he did not have on his own and which the health care system was unlikely to provide.
LG was referred by her oncologic surgeon for pain management. She was diagnosed with stage IIb right breast cancer and complained of intractable pain in the right chest. She was consistently asking for more pain medication. She had no evidence for any metastatic disease or nerve involvement and there did not appear to be any physical association between her cancer and her pain. She was felt to be drug seeking. The treatment plan was for her to have neoadjuvant chemotherapy and radiation therapy before undergoing surgical resection. She carried a diagnosis of Bipolar Disorder and severe anxiety. To successfully complete her planned treatment regimen she was required to be at Radiation Oncology 5 days a week at an exact and specified appointment time. Every other week she was scheduled for her chemotherapy infusion which would require her to stay in the infusion center for several hours. She lived alone in a small third floor apartment. She has a mother who lives locally and they have a somewhat conflicted relationship. She reports having 2 children who may live in Mississippi and who she has not seen in years. She has multiple grandchildren that she has never met or seen. She sees a CRNP in a Psychiatry office and sees a therapist and gave permission for communication – no calls were returned to me or the Social Worker.
It became very clear very early the extent of her anxiety! The severity of her pain matched the intensity of her anxiety. She was scared to death of her cancer and scared to death of dying – and she was virtually paralyzed by the anxiety surrounding these fears. Her pain was more psychic then physical but needed to be addressed for us to be able to make any progress with anything else, a matter of trust. The CDC strongly recommends against the combined use of opiates and benzodiazepines, reality suggested that following these guidelines was unhelpful for LG. we medicated as judiciously as possible – maintaining a dynamic balance between what she “needed” with what we were comfortable giving. We established enough trust that the door opened enough for us to be able to help and to gently push. When she became nauseous with her first chemotherapy infusion we were able to add olanzapine [helpful for the nausea but much more important for the anxiety and paranoia]. Radiation became an exercise in patience and persistence and cajoling [us with the Radiation Department]. Jody, in my office, would set her alarm for 5 am to be able to call LG so she would be up and ready when the transport van arrived. When her LFT’s elevated [she also had untreated Hep C], the Gastroenterologist immediately wanted to stop her olanzapine?! No olanzapine, no treatment success of any kind; and the patient refused to stop it because she recognized how beneficial it was. So maybe we just continue the radiation and treat the Hep C and then restart the chemotherapy? It eventually became clear that she would never get her Hep C treated and she was only ever able to make it through about half of her radiation treatments – even with as much support as we could muster. So the plan changed and she had a lumpectomy and axillary lymph node dissection [6 of 9 nodes positive, stage IIIa]. The surgeon informed her that she was surgically cured???????????
If you are “cured”, why would you need to do any more treatment? Her oncologist continued to encourage her to complete treatment for Hep C, which she just could not ever do [she needed to complete more lab work and complete financial paperwork so that the medication could be paid for….], so eventually she just stopped going to appointments. We were able to wean her opiates down significantly – she was cured so the cancer was gone so there was nothing to cause the pain! Her son reportedly came to see her and drive her down to Mississippi to see her grandchildren… and at the last minute she just could not go [embarrassed and worried that they would not accept her] – the residue of a lifetime of mental illness and associated substance abuse. The relationship with her mother further devolved and her mother reported her for assault and she was arrested and we lost her to follow-up [we knew of the conflict because her mother was hospitalized and the palliative care team was consulted for her]. Chaos lived out loud.
LG was hospitalized with acute respiratory distress due to multiple PE’s and her CT showed innumerable bilateral pulmonary metastases. Her cancer was clearly stage 4. She did not want to die…but still could not see any way that she would ever complete Hep C treatment and then Chemotherapy. We talked and completed a 5Wishes document and talked about hospice. She was so weak and short of breath that she would never be able to walk up three flights of stairs. We got her to agree with coming to our hospice house to get her pain and shortness of breath and her anxiety somewhat controlled. Symptoms eased off and she wanted to go home. A neighbor/friend agreed to try to help out. We arranged for oxygen to be delivered. We arranged for the home hospice team to meet her there. She did not make it for more than a day and she was in the ED after calling 911 because she could not breathe. So back to hospice house. We tried to help her connect with her kids but she did not have their phone numbers on her phone and said they were in her apartment. We put a plan together to transport her to her apartment accompanied by the social worker, but at the last minute she could not go because of anxiety and shortness of breath. And then she died…of maybe treatable disease, without family… sometimes it is just sad. [The social worker went to her apartment with the nurse to try to collect and dispose of medication and equipment and was there when the patient’s daughter called from Mississippi, at least a little closure].
Two weeks to go! Anxious, nervous, scared – what the heck was I thinking; I can do this – I hope. Miles on the bike, miles on the legs – not much faster but a little less pain and definitely more enjoyment. So just to be clear, this is an everyperson adventure. Yes, I ride, and every time out there are people passing me on the road. Turns out you slow down as you get older?! Also gravity doesn’t have an AARP discount. This ride will challenge me in lots of ways, which is really what my personal goal was and is. I am already in better shape and my cholesterol is lower and my HDL higher than it has ever been. I am not racing, however, each days’ goal is to simply get to the next destination as fully intact as possible. The real reason for doing this continues to be about the work and the people who do the work of Hospice and Palliative Care. Not to focus on death and sorrow and suffering, but to acknowledge life and the things [large and small] that give it meaning. We recognize the suffering and continue to choose to remain present with the suffering of others. The work is hard and rewarding, a sentiment captured beautifully by someone I am very glad to know and call friend – Dr John Mulder. He and Tricia Walker led a workshop on music and songwriting for NHPCO and created Joy in a Teardrop which will accompany me on my journey and frame the conversations that will come with each stop. We cry for the losses while we celebrate the lives and the stories. Sometimes it is about Penguins.
A young woman was diagnosed with stage 4 gastric cancer. No risk factors. No explanation for the ”Why me?” question. She was not responding to treatment and was markedly cachectic. ECOG 4. Any further treatment was clearly going to be more harmful than any benefit. She agreed to hospice care but was so weak that she could not care for herself. She and her husband both worked – and made just enough to NOT be eligible for Medicaid. So, no insurance and no safety net. If he does not work there is no home for her to go home to. She came to our inpatient unit and told us that one of her regrets was never being able to go to SeaWorld. We are in eastern PA and nowhere close to any SeaWorld and she was too weak to realistically be able to travel anywhere. Someone at the hospice house knew someone who knew someone who worked at the Zoo! A wonderful zoo employee came with a penguin and spent several hours teaching about the penguin while her husband was able to take a video and she was able to touch and feed the penguin and for that moment be at SeaWorld. There were lots of tears that day and many of them joyful for the simple experience of living in that moment.
A journey of any length starts somewhere. A bicycle journey of 1056 miles starts with logging time on the bicycle. Getting the legs and heart and lungs in shape to handle whatever each day brings. Getting the head in a place that is okay with riding for 6 hours plus at a stretch, no matter the route or the weather – especially on days where you would really rather not. I took this challenge on because it is a challenge. This is not something I have ever done before so it will push me on many levels – especially being comfortable with myself. I really want to make this work so I have been doing the work of logging those miles as much and as often as I can [weekends]! Since March I have logged 2062 miles and burned 103,943 calories. I would like to be younger, faster, stronger…but where would the challenge be then?! So I am who I am and I am going to get on my bicycle at 11AM on September 2nd and head north to Stroudsburg. Each day I am going to get up and head off to the next stop – don’t look back and don’t look to far ahead, good mindfulness meditation training. At each stop I will bring all of who I am to anyone who will listen about hospice and palliative care, about living in the moment and as fully as you can, about celebrating the people we serve and the people who serve, about honoring ourselves and each person we touch – don’t wait! I have been interviewed and filmed for this ride before it has even started. Lots of marketing people will be scheduling more interviews and filmings and photos, for a guy who would really rather be anonymous. I am hoping that each of these events will surround me with all of you and create a real celebration of hospice and palliative care across the state. Highlighting each location and each team while connecting us all along the route and the map.
I am fortunate beyond words.
By Rudyard Kipling
If you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating,
And yet don’t look too good, nor talk too wise:
If you can dream—and not make dreams your master;
If you can think—and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build ’em up with worn-out tools:
If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: ‘Hold on!’
If you can talk with crowds and keep your virtue,
Or walk with Kings—nor lose the common touch,
If neither foes nor loving friends can hurt you,
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds’ worth of distance run,
Yours is the Earth and everything that’s in it,
And—which is more—you’ll be a Man, my son!
This was one of my father’s favorite poems, or at least one he quoted to me his oldest son. I wanted so much to make him proud, and struggled for a long time with not feeling as if I lived up to his ideals [which I know was not the case, but I effectively internalized that need to please]. He was the youngest of three surviving brothers [a younger brother died as a young man in the military]. He was dyslexic and left handed and struggled in school. He completed college after the Korean War on the GI bill going to school at night at Temple. My mother was never allowed by her father to go to college [girls did not go to college]. Doing well in school was never a question. Anything less than an A required an explanation. I had to succeed. And I did. It was much harder on my middle brother who is 3 years younger than I am and did not ever have an even playing field – my father’s expectations and a big brother with straight A’s. I regret the distance that developed between us and still exists.
I have exceeded expectations; I am a man as the poem says [fully aware of the advantages of being a middle class white Christian male]. I have a true partner and friend in Martha ,my wife – still the best part of every day. I have children I am proud of and who are wonderful parents and still value my advice [when they seek it]. I have professional relationships across all specialties and with all providers and colleagues in every part of the health care field. I get to do work that is important and valued and satisfying personally and professionally, and that I am reasonably good at. I truly believe that much of what I am and have I have manifested by being my authentic self as fully and truly as possible. I am fortunate beyond words. The respect that I have cultivated is now manifested in this Don’t Wait project allowing me to have a voice that others may hear. Gratitude beyond measure to Lonna Donaghue, Executive Director of PHPCN who has connected dots all across the state; Diane Hummel-Spruill, VP of Hospice for St Luke’s who understood my need to fly so that I can return and fully commit to hospice; Marissa Lewicki who brought youthful enthusiasm and marketing smarts to amplify the message; Anne Huey, chaplain extraordinaire and friend who accepts unconditionally; Gary Gardia, MSW, LCSW, who always makes me look deeper at who I am and what we do; Frank Ostaseski and his wisdom and Invitations; John Mulder, MD, a model of wisdom, humility and talent and a Joy in a Teardrop; Joan Harrold, MD, friend and colleague and inspiration for how to be a hospice doc [thank you for getting me to be part of PHPCN]; Phillip Rogers, MD who put into words the spark behind Don’t Wait; and everyone that I have had the privilege to work with – to teach and learn and be present.
On the road! First day started with an amazing send off from family and friends. I cannot find enough words to explain my gratitude and pride. I am still trying to figure out how to upload video from the GoPro to be able to add pictures to the posts going forward - will keep working on that [or ask one of my grandchildren how to do it]. 40 miles riding with Dr. Doug Degler was a great way to start [the rain made for an interesting reminder of having no control over the weather]. While I am used to riding alone, it was nice to have a companion on the first ride. Now that it is happening, it feels a little scary and overwhelming, and a little lonely. Spending the afternoon and evening with Doug and his family reminded me of the value of house calls and one of the true values of hospice in meeting people where they really are. When you have that opportunity to see the fullness of who someone is it is much easier to be truly helpful by directing the help/care/support toward what the person really needs and values – it is never about us and often what we think we know that someone needs is way off the mark and potentially more harmful than helpful. Today is the first of the “work” of this project with a Grand Rounds at St. Luke’s Monroe campus and I am a little nervous. I know what I want to say and now here is the opportunity to stand up and speak up. There will be an interview by the Peak before the lecture wanting my thoughts on the news that the St Luke’s Ball, put on by the Auxiliary, has decided to donate the proceeds of next year’s event to Hospice and Palliative Care. This is a truly remarkable achievement and one that will require some careful thinking about how best to use this money – both for the Hospice and Palliative Care Programs and for the organization as a whole. Don’t Wait to focus on what will make a lasting statement. Immediately after the lecture I will change clothes [there are no phone booths any more to be able to do a Superman] and hop on the bike and head to St. Luke’s Miner’s Hospital Campus; 42.1 miles according to the map, with lots of hills along the way. Some pressure with today’s ride, as I need to be there and ready for tonight’s event with a showing of Being Mortal and a tribute to Dr. Joanne Calabrese for 10 years of service as the hospice physician for the Lehighton branch office. This should be good training in mindfulness – staying in the moment and not getting too far ahead; trusting in the value of the message; believing that everyone is right there with me and that I represent a remarkable team; and trusting in myself.
Just to make things interesting, Dr. Degler casually mentioned to me the evening before my lecture at Monroe that Eric Cassel would be attending. “That Eric Cassell?” yes Dr. Eric Cassell, the author of The Nature of Suffering and the Goals of Medicine, and a true pioneer in palliative care. We had a chance to meet before the lecture and again afterwards. He was wonderfully gracious and supportive and appreciative of my words. Ok! The message is on target and the delivery went well! A standing room only audience attendance! Off to Lansford. Mapquest seems to have a strange sense of humor, as the directions led me to a dead end in a swamp! Backtracking and an additional 10 miles on the ride along with all of those hills!!! Made it with enough room to spare for a shower! Along the ride, I had the opportunity to review some of my anxiety about this whole adventure. I feel more confident about the validity of the idea behind Don’t Wait and about the message I am trying to deliver. I also reframed my riding. When I left hospice house on Monday I was riding away from my wife and family and friends and work – all of what felt safe. Today I am riding back toward all of that. Each day will bring me closer to meeting up with Martha on Friday or Saturday, and each mile moves me toward my new self as Hospice Medical Director and former Department Chairman. That feels so much better and now I will keep riding.
The evening event at St Luke’s Miners had a nice turnout of hospice staff, Wendy Lazo and community attendance with the showing of the Being Mortal video and an excellent discussion that followed. We were also able to publicly say thank you to Dr. Joanne Calabrese for 10 years of excellent service as the hospice physician for the Lehighton branch office. She was surprised and somewhat embarrassed, but much deserved and much needed for the hospice staff who have worked with her. Staying overnight in a hospital room on an otherwise empty ward was a little surreal, but more than adequate. There was a nice turnout for the morning Grand Rounds, which was well received and seemed to be genuinely appreciated. Then hand off my clothes and gear, and back on the bike to Bloomsburg, hoping Mapquest is more direct and has no surprises along the way.
No surprises on the road! 45 miles and 3151 feet of climbing, but made it without difficulty and arrived at the Community Park well in advance of estimated time. I was able to ride up to the hospital and join the IDG meeting with Susan Smith and Dr. J. Joseph for their hospice team meeting [they invited me to sit at the table, but I felt a little “well ridden” and pretty sweaty, so I sat in the back and enjoyed just being able to listen and watch the process. Another reminder of how connected we all are and more similar than different. Wonderful team interaction and discussion. The community event after the team meeting was very intimate and provided a nice opportunity just to connect with each other, followed by a wonderful dinner [pasta for carbo loading!] and a very nice evening with Dr. Joseph and his family. A real extra benefit of this journey is meeting people in their homes and being able to connect on a personal level. The following morning there was a terrific turnout for the presentation with a very diverse audience. The Don’t Wait message was well received and seemed to be particularly timely for the Geissinger At Home team and one of the physician leaders for the team! Really gratifying when the message that you think should be delivered and heard is exactly the message someone is wanting and waiting to hear – Show up, Stand up and Speak up.
Very interesting process of giving a formal talk dressed in cycling clothes and then hopping on the bike to the next destination. Clothes and gear handed off and away I go, continuing to move forward personally and spiritually on this journey/vision quest. I am anticipating today’s ride will be a little harder with some leg soreness, but I have no time constraints and the weather looks good.
37 miles and 2292 feet of climbing…no sweat right!? Diane conveniently forgot to tell me that her sister lived pretty much on the top of a long hill, with a sharp turn onto the driveway which was even steeper! Made it with time and legs to spare and no agenda for the rest of the day. The simple pleasure of just being in a space and time without needing to be anything or do anything was very relaxing and refreshing. A shower after a hot ride is also one of the true pleasures in life. We had a really nice time having local beers and dinner at a local food truck – simple, unpretentious and truly delightful; so much more enjoyable than being alone in a hotel. I was also able to share the Don’t Wait idea and motivation, and we had a helpful discussion about the value of palliative care including a recommendation for a referral to Dr Nesbitt. A huge thank you to Debbie and Lou and to Susan Smith as well for making sure all of my gear arrived.
Friday morning I decided that I could accept a ride into Williamsport to meet with Dr Nesbitt. I had a personal tour of the hospice unit and some of the wonderful things they are able to offer their patients – including a volunteer choir available to sing for patients and families in the unit and at home, especially important for many of the Amish families. Meeting the teams for hospice and palliative care felt like connecting more of the dots of care teams across the state, which was an additional goal of the Don’t Wait tour. I received an added benefit when they gave me directions to a rail trail that would get me to Wellsboro without needing to use PA 287 [everyone felt safer with that idea]. Now back on the bicycle and north to Wellsboro on a beautiful day with cooler temperatures and clear skies. The roads to the rail trail were generally light in terms of traffic and had a decent surface. I made it to McConnell’s General store in Waterville and had some Gatorade and a candy bar, then off. The trail was beautiful and well maintained and even presented a Bald Eagle in flight over the Creek. Lots of miles to just pedal!
So…while the rail trail was beautiful and well maintained, using the rail trail added 45 miles to the day: 90 miles and 3609 feet of steady elevation gain. Just to complete a very long day, the final ride up to Don’s house took me up Pearl Street, with the emphasis on UP. A long winding climb onto Buck road which is a dirt/gravel road. Just as Don pulled up in his truck looking for me [now about 3 hours later than anticipated], the back tire went flat! Time to stop!! Don had already driven down to pick up my gear so I could have my glasses [seeing being one of those simple life pleasures] and take a shower. Martha was right behind me time wise, and showed up just as I finished a shower – completing the day, and almost the first week. Dinner, some shared stories about life and then to bed. WOW! Today was right up against my physical limit and I was able to complete the ride and enjoy the weather, the scenery, and the ability to do something beyond my expectations. I feel more confident that I will be able to meet the challenges that come for the remaining legs of this journey. Don and his family opened their home to me and shared dinner with Martha and I before she headed on to Ellisburg to be with family. It was an early rise on Saturday morning, and on the bike with the sunrise behind me on Route 6. Only 34 miles and 2056 feet of elevation to go, and just coming down Rag Hill Road into Ellisburg, the back tire goes flat! Skinny road tires and dirt and gravel completely shredded that inner tube! Week 1 completed: 298 miles, 16,118 feet of climbing and 12,710 calories burned – I think I can have another serving of dessert!
9/7/1951-9/7/2019, I am 68 years old and celebrated at the Pond in Ellisburg with Martha and several of my cousins and my uncle Budge. All day long I received texts from everyone that I know wishing me a Happy Birthday, an almost overwhelming flow of love, respect and support. Thank you to everyone. It also means that there are so many people along this journey with me. The potential for the core of this idea and message to take hold and flower in so many directions feels very real.
As with all of life, and so well captured in his song Joy in a Teardrop [John Mulder and Tricia Walker], joy and sadness walk hand in hand. My uncle will turn 97 within the next few days and for the first time in my entire life he is an old man. He has always been active and directive and independent - Fully in control of all around him. He is my favorite uncle and he is the last of his generation in my father’s family. Martha and I both felt a sense of saying goodbye to him this weekend. He has become dependent on the help of others – particularly his children. He will leave the Pond, which is his sanctuary, early Monday morning to go with his daughter and son-in-law to their home in Atlanta. Will he have the opportunity to return to his Pond next year? Mortality seems more present - A definite reminder of one of the basic driving themes of this journey – Don’t Wait. Martha and I each made a pointed effort to spend time with Budge and to personally say goodbye on Sunday night. That evening I felt the combined pride and joy of family connections and the awareness of the impermanence of all things. Will we return to the Pond? We can certainly carry the spirit of all of it with us. So I will add that spirit to my little kit bag carried in the back pocket of my riding shirts – money for buying water, credit card as back up, drivers license for identity, insurance card just in case and the symbols of protection in the stones from Martha and the angel coin from Gina and the amulet from Deb [which is actually around my neck while riding]. I am fortunate beyond words.
Week 2! Up early with the sunrise and the morning fog. On the road to Warren, 66 miles expected distance and a large part of it through National Forest land. For the first time I have a real support vehicle and structure with Martha on the road with me. We had to figure out how to work together and it was already clear how much better having her here is when I had a flat tire and she came back and I was able to use a good pump to really inflate the tire instead of trying to do it with my small bike pump or with CO2 [which tends to dissipate over time]. We also discovered how much reliance we have on technology when I had the second flat and Martha did not respond – my anxiety for her went way up and the realization that there was nothing I could do but trust in her and the universe to take care. Everything worked out but she developed a plan to be ahead of me or behind me by no more than 20 miles. Her anxiety increased markedly when we she realized there is no cell service in the National Forest. By this time she had been in contact with Lisa To in Warren and knew to expect that and be prepared. We played leapfrog for the day and I think she developed some increased appreciation of hills. Long climb up to a plateau but then a long stretch on top of the plateau so a very nice ride altogether – made especially poignant by the feeling of true teamwork with Martha. We arrived in Warren together as Martha had scouted ahead and been in contact with John Mangus the caretaker of the home where we were to stay. John’s sister had died on Hospice and his son had built the Mangus Hospitality House and provided it to the Hospice of Warren County for their use with families and guests. We had a tour of their offices and their beautiful hospice house in a wooded setting outside of Warren. The evening program was in “our” house, the Mangus Hospitality House, with a large crowd for the celebration of the 40th anniversary of the founding of the Hospice of Warren County. Martha and I were both so impressed with the overwhelming sense of true community support and involvement and pride. I think I was more anxious about what to say for this event than any so far – what could I possibly offer to this wonderful group of people who fully embrace the hospice and palliative care spirit and model every day. I was truly honored to be present and be a small part in their success. The Ting-Sha helped to frame the space as sacred and we talked about the personal journey and the layers of meaning that draw us all together. Also, Maizie our Cavalier King Charles Spaniel who is Martha’s traveling companion on her journey is the star of every stop! Cute and behaving perfectly – a therapy dog in many senses, opening more doors for connections along the way.
Teamwork! That is the hallmark of hospice and palliative care and now the vehicle for success every day. Coordinating directions, filling water bottles and extra bottles now that Martha is the SAG car, loading the car and walking Maizie and off we go. Next stop Erie! New roads and new adventures, but doing it together feels so much better. We were able to talk about last nights event and Martha’s perspective including my presentation and where the anxiety impacted what I might have said or focused on – true collaboration and learning on both sides. With Martha able to navigate the route and scout ahead, I just have to focus on riding. No lost time looking for directions or missing turns along the route. As I pulled into our destination in Erie a local television crew was waiting with their camera for an interview, followed by a second news crew with a camera and an interview!! Spreading the message everywhere we go. Jack Martin, our host in Erie, is a Funeral Director and active in the community. He arranged for the event and the Media and is genuinely excited at the idea of the tour and the stop in Erie [“no one comes to Erie…”]. We had a very nice community turn out for showing the movie Getting Grace. The movie is really good and such a perfect accompaniment to the primary themes of this Don’t Wait tour with a focus on life more than death and in understanding grief and loss are part of life and living. The movie was followed by a very nice discussion that again focused on the ideas of not waiting for important issues/concerns and for de-stigmatizing hospice and palliative care. Also I felt a real sense of pride with having our hospice house be part of the movie. The community connections and the kindness of people we meet along this trip continue to impress both of us and fill us with a sense of hope. Maizie continues to be a star attraction!
We were able to ease in to the day a little bit today. There is a very full schedule but I only have 38 miles to get to Meadville so there should be plenty of time! Another flat tire!! Now I have anxiety about the bikes because I could not find any puncture to explain the flat [3rd one for this tire] so I changed bikes and started to reframe my thinking about how I would adjust to riding the Fuji bike which is not as nicely geared for the hills. I made it to Meadville with lots of time to spare and we were able to check in to the Bed and Breakfast house and get a quick shower. We found Emig’s bike shop and they were able to find a tiny sharp piece of gravel inside the rim!! Repairs done on the spot at no charge! The kindness of strangers and now I can let go of the anxiety about the bike and the tires holding up, a huge relief! Meadville had a huge turn out for the noon conference and a great reception to my talk and message. Lots of great discussion and questions and some pictures for the book. No time to linger though because I need to be in Franklin in less than 2 hours and it is 26 miles away!
With a considerable push and survival up over the several hills along the way, I rolled into the Collins House in Franklin right on time. The entire staff and team from Venango was standing outside waiting for me to ride in. What a reception. Such genuine hospitality for all three of us, yes Maizie is again a star attraction [she will have to write her own blog]. They proudly showed off their hospice house and introduced all of their staff and several volunteers and I again framed the time with the Ting-Sha and continued the message of positive focus and energy around the work and people of hospice and palliative care. The immediate connection of people who have already figured out how to bring their whole self to the experience is so fulfilling and hopeful. Having more pictures to fill the map for our state just completed the day. The day culminated with a very nice evening and dinner with Jennifer and Randy Zelen – new connections around common goals and themes.
Thursday morning with a rare opportunity for a later start and no time pressure for the day. Breakfast and an easy drive to Franklin where I ended my ride yesterday. 33 or 34 miles to Clarion with Martha scouting ahead. Some hills especially at the end of the ride but no real problem today and I was able to ride into Clarion with Deb Kelly and some colleagues waiting to greet us. We were given a nice tour for the college nursing simulation lab facilities and then an afternoon off to rest and prepare for tomorrow and spend time with Martha. I set off on this journey partly to explore myself – look at what is really important to me and something other than work that might be meaningful for the future, and to do that I really need to be mindful and present. The riding helps, though it is really all about being very focused on the ride itself – traffic and the road surface to avoid holes and glass and debris. Being away from work and truly letting go of work has been actually easier than I expected. There has been a shift in my energy into the stops and the presentations, which has generated more anxiety than I anticipated and has been more tiring than I expected [mentally and spiritually] – opening myself up fully and trusting that my message will resonate and be well received, being vulnerable. The unexpected gift of having to be open and vulnerable has been in terms of my personal relationships. Certainly the support has been amazing and the realization and acceptance of that support by myself as authentic and meaningful has been significant personal growth [being someone who struggles with self image] – Frank tells us to bring your whole self to the experience. The real gift has been the deepening of my relationship with my wife. We have been a real team and we have recognized and supported each others anxieties about this journey and the shared experience - another reminder to not wait. I think we have both grown personally and have grown together relationally. Welcome everything, push away nothing. We had a very nice dinner together sharing beer and burgers.
Clarion University held their first seminar on End of Life care focusing on interdisciplinary interaction and interconnection. This is such an important and awesome idea and Deb Kelly and the Dean and Faculty at Clarion should be lauded and highlighted for putting this together. Arriving at the lecture room and finding nearly 300 students present [and from multiple disciplines and all voluntary] was almost overwhelming. The program for the day made both Martha and I sorry that we would have to leave for Butler soon after my opening Keynote presentation. After the Dean opened the day and welcomed everyone and Deb Kelly gave way more of an introduction than felt comfortable, I gave my story and my motivations and my message and told some stories. The audience was silent and focused and engaged and the speaker seemed in command of his material – I think this may have been one of the most comfortable and confident I have ever been with speaking to a large group! I came away feeling incredibly energized and full of gratitude for having had this opportunity. I felt fully present and that I really brought my whole self to the presentation, an amazingly empowering feeling. Martha was able to be present for the entire presentation [along with Maizie who seemed completely unfazed with being at college] and felt that it delivered exactly the message that I said was the core of this whole Don’t Wait tour. One of the personal messages I have felt strongly about standing up and speaking up about is primary end of life education for all health care disciplines – nursing, physical and occupational therapy, speech therapy, social work, behavioral health/psychology, and seminary – and here it all was being offered and accepted with interest. Well done Clarion University. My only regret for the morning was having to leave to get on the bike to ride to Butler for the evenings event and missing the opportunity to hear some of the other speaker and to meet the University President. I guess we will just have to come back!
On the bike with some residual cortisol high and off we headed to Butler – 46 miles and some hills expected. The weather threatened some chance of rain making for high humidity. Once the cortisol wore off I realized the cumulative effects of riding hard every day and speaking every day, I felt tired and slow on the hills. This is truly a fully committing experience physically, emotionally and spiritually and I am so very thankful that I have this opportunity and that it has exceeded expectations to this point. We rolled into Butler and I was able to have the pink socks that Dillon Stein gave me and Martha captured it with a picture [Dillon says it is going on Twitter]. A little time to get some lunch and rest before meeting with Dr Kathy Selvaggi for tonight’s presentation.
Tonight we met at a restaurant just 100 yards from the hotel I was staying in. They had a well organized dinner and program with an excellent audience of physicians, nurses and CRNP’s involved in hospice and palliative care. This was the first joint presentation for this tour. I have often been introduced as a national expert which feels presumptuous to me. I certainly don’t feel like a national authority and while I have presented at some national meetings, I personally just see myself as an average guy who really believes in what he does. I am not shooting for false humility here. When I floated this Don’t Wait Tour idea out I recognized that to be fully effective I was going to have to accept some attention and notoriety. With Dr Kathy Selvaggi present I realized that it would have been very easy for me to let her take the lead [and she was not asking or indicating in any way that she should]. But this is my Tour and the trade off for the physical effort of riding over 550 miles to get here is that I can take the lead. I can feel confident in myself and my message and the value of giving voice to the benefits of good and early palliative care and hospice. So I did just that and it felt okay and again was well received. Another program is recognized and connected across the state [I am certain that Dillon will be on Twitter] and the message of positive energy and focus on the value of hospice and palliative care continues to move forward. I think I will keep going and keep pedaling.
Saturday morning we are up early and packed and ready to head to Pittsburgh. For the first time since the kick-off ride on day 1, I will have someone riding along. Dr Keith Lagnese CMO of Family Hospice joined me for the ride to Pittsburgh with plans to continue along toward Altoona. Keith’s wife Jan will take over as the support vehicle. Keith is very interested in this project and we had a wonderful opportunity to connect and share our personal stories of how we got to hospice work and what we find meaningful and important both personally and professionally. The 46 mile ride really seemed to fly by [though I am not sure that fly would apply to the hills] creating a much different experience than the solo rides up to this point. The plan is to spend Saturday and Saturday night south of Pittsburgh with Matthew and Trish and the grandchildren Eme and Drake. Nice to not have any specific agenda, and a day off the bike is a welcome treat as well. Sunday Martha has to head home to get back to work and our other 2 dogs – Apollo and Riley, Golden Retrievers. It has been such a blessing having her along for these past 10 days and separating again will be difficult for both of us. Sunday I will hang out at Keith’s house and catch up on these posts.
The amazing kindness of strangers continues to be a source of humility and wonder and hope. A good friend of Keith’s named John came over to check out my bike before the second half of this journey. He is an Architect by avocation and a bike mechanic as a hobby. We discovered several things – the back tire was completely flat yet again and I forgot to get my pump and extra set of tires out of Martha’s car! John was able to find the tiny little sliver of metal wire poking through the tire and creating an almost invisible hole in the inner tube. Finding that and having a clear and simple explanation for the problem was a tremendous relief. We put in the new tube and all seemed good to go. Having a back-up tire seemed to be a wise move and John gave me a ride to a familiar bike shop nearby, and now I have an extra tube and an extra tire that will fold up and can ride along in my back pocket. Good to go for Monday. Looking ahead at the coming week I need to be focused on staying in the moment and not getting too far ahead. Altoona will be the busiest stop with multiple activities planned. The ride from Altoona to Chambersburg will be the longest and hardest section of the entire journey, a real test of mental and physical endurance and resolve. I will keep everyone updated and keep the thoughts and reflections flowing.
So many people pulling together to organize and take care of all the big things needed to make this project work, and the tiniest of things feels the most daunting and possibly overwhelming. I had the 5th flat on my back tire again today!!! Miniscule hole in the inner tube and no clear source. So I changed the tire and replaced the inner tube and was able to finish the ride today with 60 PSI instead of 80. The challenge now is to not carry anxiety about the tire with me through the events of tomorrow and then the long ride for Wednesday. Martha raised the question of what meaning I am giving to this “tiny” problem, and what will I do and how will I feel if the problem continues and ends up shortening the riding I am able to do.
Welcome everything, push away nothing. I took the anxiety over my “tiny” problem and focused on clearly defining the things that were in my control, and the things over which I had no control. I resolved to put my energy into the areas that I could actually exert some control. I mapped out my own route for the ride to Chambersburg (tomorrow), and made it as direct and simple as possible, compromising by riding on some busier roads, but roads that would be easily accessible to support. I have changed the back tire to a brand new tire with a new inner tube and I have an additional set of replacement tires. I have packed several inner tubes and checked some that I have patched so I have adequate redundancy. There is a clear plan for who will transport my gear and they will be behind me and know my route so if something does happen I could get a ride if needed. I will ride my bike a little today to be sure that the tire is holding, and then I will let go of the worry over whether something might go wrong. The “tiny” for me brought to mind the idea of vulnerability. I have often discussed in lectures and talks how very vulnerable the patients we serve are and the need for us to be respectful of that vulnerability. This project and this ride have been about being vulnerable myself. The unknown of new roads, the risks of riding on the road, distances and elevations beyond what I have done before and giving talks to new audiences with the uncertainty of whether and how the message will be received – and doing it all in the public eye. Being vulnerable is about bringing your whole self to the experience day after day, and yet remaining true to that self.
We had a very interesting set of rides today with a combination of trail toward off road/rough, mixed with some riding on the road and some hills. Riding with Keith kept everything very relaxed and fun. We arrived in Altoona with a large welcoming committee of a TV newsman, filming and interviewing, followed by informal conversation, greetings with staff and volunteers, and dinner together.
The idea of vulnerability has really stayed with me and I can’t seem to let go, like something unfinished. I have always been very sensitive to the most vulnerable of the people that I have served – recognizing the difficulty of being seriously ill without support, and with a healthcare system that is not sensitive, flexible or responsive. I am always reminded of this poem by e.e. cummings:
somewhere i have never travelled,gladly beyond
E.E.Cummings, 1894 - 1962
somewhere i have never travelled,gladly beyond
any expereince,your eyes have thei silence:
in your most frail gesture are things which enclose me,
or which i cannot touch becasue they are too near
your slightest look easily will unclose me
though i have closed myself as fingers,
you open always petal by petal myself as Spring opens
(touching skilfully,mysteriously)her first rose
or if your wish be to close me,i and
mylife will shut very beautifully,suddenly,
as when the heart of this flower imagines
the snow carefully everywhere descending;
nothing which we are to perceive in this world equals
the power of your intense fragility:whose texture
compels me with the colour of its countries,
rendering death and forever with each breathing
(i do not know what it is about you that closes
and opens;only something in me understands
the voice of your eyes is deeper than all roses)
nobody,not even the rain,has such small hands
On some level, I think this is predominantly a love poem; however, to me it has always invoked much more a sense of sadness and wonder at the strength of emotion that many of these vulnerable individuals have stimulated within me. Wanting to make a difference, yet knowing I will never truly feel what they have had to experience and wondering if I have been able to give any voice to their suffering and to their story – the chaos narratives of these lives who render death and forever with each breath and who have such small hands.
The day in Altoona was a full day with the opportunity to participate in a hospice IDG and interact with the hospice team – we are all so much more alike than different, it felt like being at home. A trip to the hospital and a meeting with the VPMA was a trip down recollection lane as we were both private practicing Family Physicians before coming to our current lives, and shared how much of that experience shaped us and our approach to caring for people. The palliative care team was also a connection with home discussing challenging situations and comparing notes on how to approach situations, strengthening that sense of connection that I was hoping this journey would provide. They fully embody the team ideal and model – seamless cooperation, support and communication. The energy and enjoyment that they had for each other was in itself energizing and uplifting. This was followed by the more formal part of the day with the opportunity for me to share my story and my message and to continue to pay homage to those have shaped my thinking and practice in hospice and palliative care. We watched Being Mortal, which remains impactful and powerful despite repeated viewings. The panel discussion afterwards was excellent. The day ended with a wonderful dinner shared among new friends. I felt more at ease and ready for the challenges ahead.
Today was going to be the crux of the physical aspects of this journey. It was always going to be the longest and hardest ride. I was picked up at 06:30 by the on-call hospice nurse who gave me a ride out of town and was going to take my gear back to the office to be there for Lonna to pick up later in the day. On the bike before 07:00 with the sun just rising over the ridge line to the east, cool and clear. I rode down route 36 with the plan to turn onto route 915, but the road ended at a T with a junction for route 26 east or west? Well, the plan was to be heading east toward Chambersburg, so I guess we will go left and head east [I suspect that if I had gone right that 26 would have led to a continuation of 36 south, but I was not taking any chances of needing to back track.] So off I headed east on 26, trusting my instincts and the universe that it would work out. Lots of farms and no cell service and no towns or road signs to tell me I was on the right track, so let’s just keep pedaling and believe. Then there is a junction with US 30 and off I go on 30 East. There is more traffic, but a good and wide shoulder and the sun is up and the temperature is perfect and I am cruising along. There are several hills and then there is a mountain – Sideling Hill, elevation 2165 feet above sea level and a long slow climb up with a 30+mph descent. This is just what I knew to expect and the only thing to do is to keep pedaling. Tuscarora Mountain was an even longer climb that just seemed to keep going! There was a Biker Bar at the very summit that had a small porch to sit for a moment and eat a Kind bar and drink some water. Hit the bathroom, get the water bottle refilled. Nothing else to do but get back on the bike and head down hill, hitting 38 mph, which felt good, with nice long curves to let the bike run. Chambersburg city limits and almost there, checking GPS to SpiriTrust Lutheran Hospice, only 7.4 additional miles to go. I pulled in to the office just minutes behind Lonna with a nice welcome and a welcome relief to just get off the bike and sit on the grass. 80 miles with 6000ft. of climbing at 12.3 mph average speed and 3600 calories burned. I made it safely and with some energy to spare and felt very satisfied with myself and the effort! I may actually be able to pull this whole thing off. I think I might be okay with some ice cream at the Ice Cream Social event planned for later this afternoon [I was actually 2 hours early]. All in a days work.
More genuinely nice people! After a very relaxed ice cream event and meet and greet type setting we went for dinner and shared stories and compared notes about program growth and development – once again we are more alike than different. I spent the evening with Dr Kent at his active and working farm and was up with the roosters for a new day. Spending even that short period on his farm rekindled memories for me of spending summer at the family dairy farm – a rite of passage for a city kid and a great experience in perspective and understanding of the value of work and the connection of things that we often take for granted. I was asked to act as a visiting consultant and Drs. Kent and Closson and I went to see a home hospice patient with some uncertainty of diagnosis and plan of care. A nice opportunity for shared decision making and collaboration and it felt like we were able to come away with a plan of action and some clarification of diagnostic possibilities and goals of care – true hospice work. We had been unable to obtain CME credits for the noon lecture and I think there was some concern about what the turnout would be. Slowly staff and hospital people started to fill in and there was a nice turnout and an interested and engaged audience. I left them with a copy of Joy in a Teardrop and changed into biking gear to head back out on the road.
Given the later start, there was some concern about being able to make the ride to Hershey before traffic and dark became issues. We agreed that I would ride as far as was safe and reasonable and then get in the car for the remainder of the way.
A weekend off! Martha offered to drive to Hershey and bring me home to see the family for the weekend – a lot for her but a very nice opportunity for me to reconnect. We stopped at my mother’s house first so she could see that I was doing well. There was time for some yard work which felt productive. Dinner with the family was a group effort and very relaxed and the next morning we stopped to see Tyler at the restaurant as he was starting his day. After a wonderful trail ride together we stopped to see Laura and Jack [youngest of our 7 grandchildren] and spend some floor time with him. The afternoon provided the chance to see both Max and Jameson run cross country – Max finished 3rd and Jameson 11th in their age groups. Time for dinner and all of a sudden the time is over and back to Hershey [a long day for Martha, a of course Maizie came along for the ride].
What a wonderful weekend and reminder of how fortunate we are with the love and support of family. The elephant in the room for me was the upcoming visit to Harrisburg on Monday!!!. I took Phil Rodgers’s message to heart about showing up and standing up and now it was going to be my turn to speak up. This suddenly has me feeling more anxious than anticipated and certainly more out of my comfort zone than any other stop [even when Eric Cassell sat in the audience]. How do I condense my message into 10 minutes and make it simple and direct and engaging. I will have ridden my bicycle 790 miles through 27 counties across the state to get to this place. I am fully committed to my belief in the work and benefits of Hospice and Palliative Care for those who need it. I have made myself vulnerable in an effort to shine a positive light on Hospice and Palliative Care and to give names and face to the people who do the work around and across the state. Teams of people who care and give for the relief of suffering and the improvement in the quality of life for those they serve. Woody Allen’s quote “It’s not that I’m afraid to die. I just don’t want to be there when it happens”, raises the idea that death is to be feared. The character, Grace, in Getting Grace says to her doctor and family – “I’m only going to die once, I really want to be there when it happens”. This feels like the message we are trying so hard to focus on – it is about living fully until you die. Hospice provides the team and the support to provide the safest space possible for someone to live as well as possible even while they are dying. And in so doing, to provide the space for “family” to celebrate that life and find Joy in a Teardrop. Don’t Wait. Palliative Care is not Hospice, and though related by it’s approach on patient and family centered holistic care provided by an interdisciplinary team, it is not defined or limited by dying/death. Palliative Care provides an opportunity to fully explore the meaning and values on someone’s life and to design a plan of care to maximize the living of those values even while undergoing treatments and care for advanced and serious illness. Don’t Wait. By facing the possibility of our death we have the opportunity to express who we are as a human being and what is important for family and providers to know when caring for us. Advanced care planning that includes conversation with that family and those providers, and may include a POLST, is an essential gift to anyone who may be involved in our care. Don’t Wait to have the conversation. To the system and society as a whole, we would all benefit from an increase in awareness and education on primary palliative and end-of-life care for all disciplines – medical and osteopathic schools, nursing schools, social work programs and Seminary. Don’t Wait. Thank you to all who have provided me with the amazing opportunity to have this voice and to be able to speak up about Hospice and Palliative Care.
I woke up at 5:30 this morning with the residual ongoing anxiety of what to say, how best to use the voice I have been given – be engaging without being strident. Finally I just decided to write and let the words come as you read in the last post and that seemed to crystallize not only what I wanted to say but kept it true to myself and to the whole idea of this Don’t Wait Tour project. Since it is really only about 10 miles to the Capitol, I thought I would feel much more authentic and true to what I was going to say by actually riding into the city and that definitely helped. The guard at the Capitol could not have been nicer and more helpful and even asked how old I was and was then even more animated about my presence with the bike. The energy in the Capitol building is unreal, and somewhat intimidating for someone with a social tolerance of three people! As Lisa and Diane and Michelle and Anne arrived to represent St. Luke’s so, too, Lonna and Paige and Betsy and Sue Metz and Amy were there to represent PHPCN. While I still felt very nervous and out of place, I also felt incredibly supported and proud to represent so many terrific people and both exceptional organizations. The formal press conference began with speeches by Senators, Schwank and Haywood, that each included some personal understanding of the important issues. Anne gave a wonderful introduction that fully captured all of what was important to me about this project, and then it was my turn in front of the cameras. While I was definitely more nervous than for any other event, I was able to say focused on being present in the moment and being true to the work and the people. There were lots of pictures and then we went upstairs to the Governor’s reception room. Governor Wolf was open and generous with his interest and time and we even had a few moments to chat and agree on the need for better palliative care education and for ways to incentivize for more Family Physicians. More photos and then on to the next person. All in all we met with and had photos with several active legislators that Melissa Shafer was able to arrange and it really felt like a win-win day for PHPCN, St. Luke’s and Hospice and Palliative Care in general. I am happy that this all came together and I am very glad it is done. I feel very confident that I would not like to be a politician and would not really want to be famous! Tomorrow will be a long ride to Philadelphia but without too many large hills and with all day to complete. Wednesday I will present a Lunch and Learn at the VA Hospital in Philadelphia. Thursday I will ride back to where we started this and begin to reflect on all of what was accomplished and all of what it might mean – which should be good for a few more posts.
Well I think I found my physical edge! The ride from Hershey was not only long but considerably more up and down then I expected. 95 miles and 4570 feet of climbing over 6 hours and 48 minutes at 13.6 mph costing 4005 calories and a complete feeling of fatigue. Mentally I was able to remain focused and I could have ridden another 5 miles if I had needed to, however, when I stopped I really felt washed out. Completing that ride leaves only the ride home to complete this whole adventure by returning to where we started. I came to Philadelphia with the plan for doing a Lunch and Learn at the VA Hospital which I was really looking forward to. As a Medical Student I did many rotations at the VA Hospital in Philadelphia and as a former Navy Physician, it felt like a nice place to finish the message part of this journey. Unfortunately there was some confusion with the plan and it never got confirmed. I was staying with Jim Ingalls, a wonderful Chaplain for Hospice and a long time friend, and his wife. I decided that I would go into the city with Jim to meet his team at Temple. Finally there was a decision that the VA was not going to happen. Since I was with the palliative care team, they offered to have me come along as an observer and I got to participate with various team members. At lunch the team reviewed the patient list and new consults and proceeded with dividing the work. The Medical Student was asked to make a return check-in visit with the wife of a patient on a ventilator. For no really obvious reason, I offered to go along with the student. I may have thought there would be an opportunity to get some sense of a student’s perspective of a palliative care rotation that would not be colored by the presence of an attending physician. No matter the covert reason, I tagged along with the intent of simply observing the encounter. The visit went as badly as it is possible for a simple check-in to go – with an irate wife raising her voice, twisting words and suggesting that the student was lying and trying to cover it up when the critical care fellow appeared. The wife pushed past the student and stormed out leaving her red faced and devastated. The universe certainly has its own plan and the plan for me was to be right there at that moment. Welcome everything, push away nothing is what Frank Ostaseski teaches and I tried to provide that context for the student. What can you learn form this encounter? Were there things that could have been done differently? Was your intention to cause distress, and since it was not then are you responsible for the outcome? It felt like I was able to be helpful and able to provide context and perspective and to reframe the encounter in ways more hopeful and positive then helpless and negative. I certainly would not have penciled this encounter unto the agenda for the Don’t Wait Tour and I am incredibly thankful for the opportunity that was presented to me. Maybe the most appropriate and perfect ending to this project. A ride home tomorrow will close the circle and leave me with developing my own personal reflections of this entire experience.