In my very first week as a home hospice physician, my mentor, a veteran home hospice doctor told me, “Start a feel-good file. It’s important.” I nodded in agreement, mentally documenting new EHR passwords and the location of the bathroom.

I think about the words “feel-good file” often. Honestly, I once found it to be a pompous thought; if I was hearing her correctly, my instruction was to gather kind words about myself for my own good. I wasn’t sure how I could be more important than those I survive, or the family that I am apart of. Eventually though, cards and small gifts started floating around my computer bag and my home, leading me to stuff these mementos in a drawer in my bedside table. There I had it, my makeshift “feel-good file”. Good for me. I followed directions.

Good for me indeed. These words were all either sent to me or given to me by patients and their families, thanking me for my services as their hospice doctor. What a special thing. I found myself wondering if any of my friends or family had a “feel-good file”. It wasn’t likely. As professionals in hospice and palliative medicine, we are so very lucky.

It used to be that when I received a card or gift, I’d show my husband what was written about me and beam. In my eyes, those words were written by people in the worst time of their lives. What an honor that they would take the time to write me about their experience when there were certainly more pressing demands on their time. In some ways, sharing these cards was a good way to depict the intensity of my job with my non-medical husband. As I had come to discover, however, these words of warmth, appreciation, and gratitude weren’t always accepted with pride.

I very rarely have to work. Most days at my job as a hospice home-care physician are spent enjoying time with patients and families; sort of like days with old friends, sharing stories, experiences, and prayers (those on-call weekends, on the other hand…). I don’t consider it work. It’s an honor. My husband, however, has a tense job working in the stock market, with deadlines, stressful daily human interactions, and a several hour daily commute. These cards and kind words represent recognition by community members, all for doing my job. I suspect that every card, gift, and drawing that I received reminded him of a fulfillment that he didn’t have in his career.

When I sensed his discontent, I stopped showing him my cards. But I keep them close to me in my makeshift feel-good file, which has become more important to me than my mentor knows.

Let’s face it: while our job is beautiful, immensely gratifying, and glorious, our job is also taxing, nerve-racking, and sad. We meet new people all of the time, get to know them, get to love them (or like them in the case of some COPDers), and we lose them. We go to funerals, memorial services, and services of remembrance. I often struggle with wanting to keep contact with families after their love ones’ death, but am cautioned by many to keep some distance. Such close, intense relationships built in a short amount of time, only to have them dissolve in an instant. It doesn’t quite seem fair to any of us. My “feel-good file” reminds me of journeys I have walked with patients and families, of the weather on the day I first met them, where I was when I heard of their death, and first impressions that may or may not proved true. Review of the “feel-good file” reminds me of snap decisions that I made in the time of crisis, and the joys of an intractable symptom, managed. It reminds me of where I started as an attending and how I’ve grown. It reminds me of how lucky I am to be able to do this job and meet wonderful families in my community each day. Looking ahead, I think the “feel-good file” will help preserve myself for use by others by attenuating burnout. It will stand as a constant reminder that I’m doing good for people, and that this job, like the stock market, is full of both risk and reward.

Yet, I haven’t been able to shake the bit of guilt I feel for having a drawer full of nice things that people have written about me. I have often thought that I feel too good when I’m complimented by co-workers, patients, or their family. Additionally, I have heard co-workers comment on compliments that they have received. Are we a field that thrives on positive feedback? Or do we just need it to do what we do?

Of course, an unintended effect of the “feel-good file” is the constant worry about those whom I felt connected with but never heard from again after a loss. I know I should not expect any feedback on my position in their life, but I often wonder if I did something wrong. Did they view my services as detrimental in any way? I would argue that a drawer full of only positive feedback is dangerous without some balance. After all, there isn’t much to learn from positive feedback.

I should have asked my mentor why a “feel- good file” is so important. I suspect she would say something to the effect of, “Because life is hard” or “It’s good to be appreciated.” Ours is a difficult job, undoubtedly. Ours is a job filled with perpetual loss where we are giving our inner-most self to strangers. Our rewards, however, are plentiful, and sometimes they begin with “Dear Dr. Calkins…”

Bethany Calkins, MD

Since 2010, I have been actively engaged The Personal Caring Initiative at Mayo Clinic Health System and I have given a lot of thought to the future of caring for seriously ill people and spent many hours in front of diverse audiences talking about health care and palliative care. Most recently, I have created a model of a paradigm shift in medical care that I think exemplifies a paradigm shift in medicine to reintroduce healing to the medical mandate to provide better care for seriously ill people and those they love. Often when speaking about this I receive questions about why it is necessary to change how palliative care is funded and I have applied simple restaurant guide techniques to explain the palliative care financing problem. Perhaps this is helpful to you.

The Current Medical Model
The current model of care is one that is problem based and represented on the left side of the table below. For each diagnosis is a corresponding treatment. This has largely been the success of the last several decades of medical discovery and improved treatments. Thankfully, these discoveries have been made and have resulted in improved therapies and ultimately in increased longevity. All of these developments are wonderful, however, today people living

with multiple diagnosis's are at risk for a new modern medical problem. Namely, they are at risk for increasing burden of disease, burden of treatment, difficult and increasing symptoms, and declining function. Despite how we train medical professionals, the Best Care Possible, isn’t the sum total of the treatments for seriously ill people. I observe learners competing to make the longest problem lists and corresponding treatments. The same students struggle communicating with people about their hopes, fears and overall goals. How do we ensure equal attention to the biology of disease and the lived experience of the patient and family?

The Paradigm Shift
In clinical situations, where the sum total of the treatments doesn’t add up to the best care or even increased longevity, the medical mandate has to explore the right side of the table. Preferably the medical mandate would represent both sides of this table. Attention to the goals of the patient and family start to guide which therapies will contribute to the goals they have defined for themselves. Expert symptom management accompanies their goals to enhance their quality of life. The right side of the table is largely representative of palliative care. The entire table represents a concurrent approach to seriously ill people as a partnership between palliative care and other disciplines. Palliative care and the right side of the chart largely represents the long lost art of healing which took a backseat to medical discovery in the last many years however, once again healing is regaining importance as the success of medical discovery has rendered many suffering from the ill effects of co-morbid illness and strenuous treatments. Changing the way we practice and educate next generations is foundational to this paradigm shift and palliative care must lead the movement.

The Restaurant Guide to Funding Concurrent Care
Quite simply, if we had to apply dollar signs to the chart above the diagnosis column would get maybe $$$$. The treatment column would get $$$$-$$$$$$ depending on the treatment. In contrast the entire right side of the chart would get maybe a half a dollar sign, even though patients and families really value what is offered in a healing, goal based approach to care. Necessity and financing are why healing has taken a backseat to medical developments. Now we see a surge in the development of palliative care to reintroduce healing to the seriously ill and perhaps the dollar signs are going to be distributed to ensure all seriously ill patients received concurrent problem based and goals based care, with increased quality of life and increased longevity as Temel’s study showed lung cancer patients live better and longer when both sides of the table work concurrently. I am no medical economist, obviously, however it would appear that the future of palliative care funding would result in a reasonable number of dollar signs to match the value of increased quality of life and longevity in the face of increasing symptoms, declining function and knowledge of the frailty of life and possibly the approaching end of life.

Cory Ingram, M.D.
Assistant Professor of Family and Palliative Medicine
Mayo Clinic, College of Medicine

Medical Director – Palliative Care
Chair of the Palliative Medicine Specialty Council
Mayo Clinic Health System

Drug shortages present more than a few challenges to the EOL community. Many constituencies, patients, clinicians, and the organizations that provide care, are affected. Challenges include consistent symptom management (very problematic when cascading supply shortages compel, what seems to be, continuous drug rotation), potential patient distress (you’re changing my pain medication AGAIN!), comfortable prescribing (what’s the conversion rate between midazolam and phenobarbital?) and financial control (parenteral levitiracetam costs WHAT!?).  

The landscape of drug shortages is constantly changing— we even have a problem quantifying how many there are! Not a day goes by that something isn’t in a shortage situation. But, how widespread is the problem (in a specific geography) and how is it affecting care? In this quarter’s publication of the AAHPM Quarterly we discussed some of the causes of drug shortages and the steps the FDA and manufacturers can and are taking to help alleviate the problem, but we did not discuss the problem at the patient prescription level.

Unfortunately, because of the nature of our complex drug manufacturing and distribution system, we cannot clearly identify when, or if, any given shortage will affect a given community. Notification of a shortage does not come with an alternative prescribing pathway— that’s left to the prescriber community. Further complicating the problem is that substitution behaviors cause drugs that were almost never in a shortage situation to “go short.”  Additionally, in search of alternate symptom management solutions, we move from the perch of what we’re experienced with and know works to that which is less clear or predictable.

What specific problems have you had and how have you managed them? How do you receive notification of drug shortages? Comment below to discuss your problems and how you solved them, or present your current problem and search for a solution.

Greg Dyke, BS RPH

On November 29, the American Society of Clinical Oncology (ASCO) hosted a first-ever Quality Measures Summit to identify a set of cross-cutting quality measures applicable to all patients with cancer, irrespective of diagnosis or place along the disease trajectory.  This meeting was in conjunction with the inaugural ASCO Quality Symposium, an educational and scientific meeting of over 600 oncology professionals in San Diego focused on quality, information technology, and health services research.  The Academy was kindly asked to join the Summit by members of the Quality Care Committee of ASCO, and three members of the AAHPM Quality Task Force attended this meeting to represent the views of our membership and our discipline.  On behalf of Dale Lupu and Kathi Bickel, I am presenting a brief update on the proceedings of this meeting and how Academy members can lend further voice to how cancer care quality will be assessed. 

In parallel to national efforts to develop quality measures that are reflective of movements towards value-based care and avoidance of low-value services, AAHPM joined the American Society of Radiation Oncology (ASTRO), National Coalition for Cancer Survivorship, Oncology Nursing Society, Society of Surgical Oncology (SOS), California Healthcare Foundation, American Urological Association, American College of Surgeons Commission on Cancer, M.D. Anderson Cancer Center, and the Livestrong Foundation to propose a set of cross-cutting quality measures that evaluate quality from time of cancer diagnosis through end-of-life care and bereavement.  Prior to the meeting, we were all asked to submit potential measure concepts.  Using the framework of the National Quality Forum and Preferred Practices for Palliative Care from the National Consensus Panel, we advocated intensely for: the incorporation of systematic, comprehensive symptom assessment on every visit (and that goes beyond treatment-related side effects); access to consultative palliative care; caregiver support and assessment of satisfaction with care; timely discussion of hospice; assessment and management of psychological and social needs; information sharing and understanding, including that of prognosis; and patient and caregiver understanding of intent of cancer-directed therapies.  These were presented with corresponding quality measure examples and supported by publications from palliative care literature. 

In what still remains with me and my colleagues as the lasting impression of this meeting, is the acceptance of, at face-value and with minimal discussion, most of the palliative care quality measure concepts presented at the Summit.  With the exception of a concept involving systematic assessment of symptoms, where an intense discussion ensued regarding the scope (i.e. which symptoms to address), frequency (i.e. which visits should assessments occur on), and methods (i.e. what tool to use, should we advocate for a specific tool) of a potential measure; concepts and principles addressing palliative and end-of-life care seemed as germane to the understanding of how high-quality cancer care should be delivered as radiologic imaging for staging of new disease.  Moreover, once-foreign concepts such as attention to advance care planning and regular involvement of palliative care teams have become accepted components of cancer care delivery worthy of measurement, reporting, and improvement.  Although domains such as assessment of caregiver satisfaction and psychosocial distress spurred lively discussion regarding details of the structures and specific tasks these would entail, it was clearly accepted that these areas are within the scope of practice of oncology care.  Furthermore, we agreed with the other participants that logistics and details are important areas of discussion; even as a discipline, we are maturing our own processes to meet these areas of quality within secondary palliative care. 

Currently, these proposed measures and concepts are now being distributed among workgroups to further hash out details of wording, scope, and essentials of measurement.  These include defining populations and settings to which the measures would apply and describing steps for feasibility testing of the potential measures in real-life settings.  As this moves forward, members of the Academy’s Quality Task Force will remain integral players in the world’s largest oncology membership organization initiative to develop cross-cutting quality measures.  This initiative is also in-line with several efforts that involve the Academy and its members in working with ASCO in further integrating palliative care education into the continuing education of oncology professionals and the curriculum of oncology fellows.  All of these efforts have strengthened the relationships between both AAHPM and ASCO, on the staff, investigator, and leadership levels.  And this has created further avenues for cooperation on efforts that improve the care of all patients with cancer. 

A common theme heard from speakers and attendees of the ASCO Quality Symposium was one that originates from the writings of Brent James, a noted policy expert on quality from Intermountain Healthcare.  Colloquially, it goes something like this:  “Quality is about enhancing reliability of delivery – you don’t have to get it right, just get it consistent first.  Then, perfect the consistent care until it’s right.”  In many ways, since the publications of the article by Jennifer Temel and the subsequent Provisional Clinical Opinion by Smith et al., we are transitioning from demonstrating the proof-of-principle that palliative care is valuable and needed in cancer.  And now, we are evolving from proving our value, to – literally – having a seat at the table during important conversations of what ideal cancer care should look like.  This involves ensuring that the spirit, principles, and expertise of palliative care are consistently and reliably interwoven into the tapestry of oncology care. 

Since my youth, I’ve been taught that consistency builds trust.  And ultimately, it is this trust that quality of life will be valued, improved, and preserved that our patients place in all of us.  And it is nothing short of remarkable that, we are – in collaboration with our partnering professional organizations – getting closer to that ideal. 

Arif Kamal, M.D.
AAHPM Quality and Standards Task Force 
Director of Quality and Outcomes,
Duke Cancer Institute
Director, Palliative Care and Quality Research
Center for Learning Health Care, Duke Clinical Research Institute

“You have a lot to learn,” he said sternly as the heat in his voice rose and his finger stood tremulously in front of my nose.  “How old are you?  I demand to know.”

This is what my home visit to an 82 year old hospice patient devolved to as I told him that he should no longer be driving.  I reminded him of the several falls he had taken recently in parking lots and in stores.  I reminded him of his recent fender bender. “Trust me,” I said.  “If I had a 30 year old patient with your disease and medication profile, I’d say the same thing.”

”I don’t trust you.  Now get out!”

I’m a 32 year old woman awaiting board certification in hospice and palliative medicine.  I’m fellowship trained in the fields of hospice and palliative medicine, and at this point in time, I’ve spent most of my life in school or in training for this, my dream job.  This is my first year as an attending physician.  I spend my day visiting hospice patients in their homes; some are imminently dying, requiring family conferences on the fly to glean understanding from family members and to ensure my patients are getting maximal symptom management.  Some of my patients are really of the palliative care sort, either referred to hospice too soon or not fully in line with the hospice mindset.  These patients are just as challenging.  My patients and their families generally share with me everything about their lives, past and present, as I’ve found that the concept of dying often allows people to open up about things they never dreamed they would. They tell me of failed relationships, beautiful family memories, run-ins with the law, things they regret, and things they are most proud of.  What my patients and families generally don’t tell me is whether or not they trust me, the young-looking woman who is in charge of theirs or their loved one’s final phase.

I do often hear age-related comments about my appearance.  The most popular of these (“You don’t look old enough to be a doctor!” and “Are you Doogie Howser?”) are often inserted in the middle of an in-depth and sensitive conversation about death and dying.  It’s what is unsaid that makes me nervous.

Do families discount what I spent hours saying because of my appearance?  My age?  My relative lack of life experience?  Do they dismiss whatever I may say over the ensuing two hours when they see “the very young doctor” walking through their door?  When I touch on sensitive topics, like driving, are patients and families less inclined to hear my concerns for all who are on the road because of my age and inexperience as a physician?

Of course, all physicians must start out in their first attending job.  In primary care, however, my job as a physician is based mostly on guidelines, with a good amount of evidentiary support for run-of-the-mill problems.  I don’t need a lot of life experience to discuss these issues with patients and patients understand this.  In palliative care, where issues are neither black nor white, it helps to back up recommendations with experience in medicine and in life.

As hospice and palliative medicine emerges as a critical medical specialty, and as fellowship training is (as of 2013) the only way to obtain certification in HPM, our physicians will be entering the field at a younger age and with less experience.  Will this be a detriment to our field?  To this point, a lot of our physicians have come to palliative care as a second or third career in medicine, lending their expertise in areas like neurology, emergency medicine, geriatrics, and surgery to patients at the end-of-life, and advancing our specialty in credibility and trustworthiness.  Will this change with the new breed of 30 year olds responsible for continuing the charge?

I do have a lot to learn.  I agree with my very angry patient.  But I know a lot, and I know a lot about the good death and about symptom management leading up to the good death.  I feel that I am a skilled communicator, thanks to my training, and good at building rapport quickly.  I also have a lot to say, and a lot to bring to my chosen field.  Considering and appreciating all of the things I can do, what I can’t do is change time.  So from here, I’ll look forward to living more life and learning more every day. 

Maybe from now on, I’ll find myself asking my hairstylist to leave the gray strands in.

Bethany Calkins, MD

Thanks to the generosity of the AAHPM’s “Research Scholars Program,” I had the opportunity to attend last week’s annual Kathleen M. Foley Research Retreat of the National Palliative Care Research Center (NPCRC, www.npcrc.org).  Each year this retreat brings together nearly one-hundred senior researchers, junior faculty, and trainees alike, in an environment built to encourage mentoring, collaboration, and networking within our growing field.  Attendees include those who have received funding from the NPCRC, their mentors, and selected national leaders.  The event clearly stands out as a manifestation of the NPCRC’s mission: to establish priorities for palliative care research and to develop a new generation of researchers in palliative medicine. 

Several trusted mentors had previously told me that this is, hands down, THE best conference in our field, so my expectations were rather high even before arriving in beautiful Park City, Utah.  Indeed, the surroundings were gorgeous, but my expectations were exceeded; it was actually the meeting experience itself that provided the most amazement and inspiration that week!  Everywhere I looked I saw another giant in the field, yet everyone was interacting informally and collegially, talking about research project ideas, struggles with grant-writing and funding, issues in career-planning, and important areas of inquiry for the future. 

I vividly remember the experience of attending my first AAHPM Annual Assembly, especially the remarkably empowering and exciting feeling of being surrounded by over 2,000 people who are similarly passionate about our field.  The Foley Retreat engendered similar feelings for me, but did so in an even more personal way by nature of its smaller footprint and more interactive design.  I made several new connections during the conference, re-connected with a few old friends, and gained new insights about the right path for me in the near future as I ponder difficult decisions about research and job opportunities for July.  I cannot thank the Academy enough for the support to attend this remarkable event, and the NPCRC for the opportunity to take part in the remarkable 2-day program.  In many ways, the experience was transformative! 

I sincerely hope to be able to participate in this remarkable event again in the near future.

Thomas W. LeBlanc, M.D, M.A.
Fellow, Medical Oncology and Palliative Medicine
Duke University

By Angela Hult, Cambia Health Foundation

“If we want to transform something as huge as health care, we have to think big. We need to change the way the people we love are dying.” –Ellen Goodman

That’s what Pulitzer Prize-winning columnist Ellen Goodman told the crowd at last week’s Cambia Health Foundation Sojourns Awards luncheon in Seattle. Goodman, who co-founded The Conversation Project, an initiative to encourage people to talk with their loved ones about their care preferences at end of life, gave the keynote address at the luncheon.

At the event, the Cambia Health Foundation honored five Northwest palliative care pioneers for their vision and innovation in the field of palliative and end-of-life care. Each of the individuals received a $50,000 Sojourns Award in recognition of their accomplishments and as an investment in their future work.

Through programs such as the Sojourns Awards, Cambia Health Foundation is committed to improving access to and quality of palliative care, recognizing and advancing leadership and innovation, and facilitating an open dialog about end-of-life issues. The foundation also provides grants to organizations working to advance palliative care in their communities.

2012 Sojourns Award Winners

• Patricia Berry, Ph.D., APRN (Salt Lake City, Utah): Helping nurses learn how to manage a patient’s pain and provide top-notch end-of-life care is University of Utah nursing professor Dr. Berry’s specialty. She also helped found the first hospice in the Intermountain West. 

• John Forsyth, M.D. (Medford, Oregon): A pioneer in the field of palliative care and the founder of a coalition called Choosing Options, Honoring Options, Dr. Forsyth has spent the last four decades encouraging Southern Oregonians to talk about their wishes and preferences for end-of-life care.
• Carolyn Nystrom, R.N. (Ketchum, Idaho): As the executive director of Hospice and Palliative Care of the Wood River Valley, Nystrom provides quality end-of-life care for rural Idahoans. Thanks in large part to her efforts, more than 90 percent of everyone who dies in Blaine County have the support of hospice care.
• Darrell Owens, Ph.D., DNP, ARNP (Seattle, Washington): After observing serious gaps in care, Owens, the director of outpatient palliative care at UW Medicine’s Harborview Medical Center, launched one of the first clinics in the nation to combine primary and palliative care for low-income patients.
• Kathy Perko, P.N.P. (Portland, Oregon): For the director of the pediatric palliative care program at OHSU Doernbecher Children’s Hospital, caring for seriously ill children is her calling. Perko is in the process of starting a pediatric palliative care telehealth program for seriously ill children in rural Oregon.

Do you know a person or organization deserving of a Sojourns Award? Nominations for the 2013 Sojourns Awards open on November 1, and close on March 1, 2013.

Angela Hult is the executive director of the Cambia Health Foundation. Learn more at www.cambiahealthfoundation.org or @CambiaHealthFdn on Twitter.

In a recent blog post I wrote about the Mayo Transform conference awarding The Personal Caring Initiative with an iSpot award to showcase our work in providing personalized care to seriously ill people and their loved ones. This initiative includes the development of a palliative care service line, however we have taken several deliberate steps to engage the community and region of our regional medical center. This blog post shares the premise and the strategies that have served to elevate The Personal Caring Initiative to a transformative approach to caring for seriously ill people in our communities. We have attempted to change care and culture.

Serious Illness is Changing
The people we are privileged to care for through the services of Mayo Clinic Health System are living with multiple serious illnesses within the communities we serve. Several studies have shown the current health care system is fractionated and inadequate to address the needs of persons and families dealing with serious life threatening illness. Palliative Medicine is the only board certified specialty whose sole aim is to as a team provide the care that seriously ill persons tell us they want, namely, personalized care.

The Future is Upon Us
In times of declining reimbursement, demands of quality care, and more ill people, we must partner with our community resources to transform the care of seriously ill people of our communities to achieve increased quality of life, provide low burden excellent care while at the same time being more efficient. Unlike any other medical teams caring for people with serious illness, palliative care, has the skill, role and time to care for people with serious illness and people who may be dying. In fact, people like you and me with lung cancer live better and longer when receiving palliative care in addition to oncology care from the time of diagnosis as compared to similar people only receiving oncology care.  As a health system, how do we insure the availability of dedicated palliative care services and enrichment of palliative care skills of our health care professionals? How do we then transform our faith leaders, our attorneys, our medical colleagues and our educators in service of people and families in our community living with a serious illness?

The Road to Transformation
Committed to the care of our most frail and seriously ill patients and their families, the southwestern region of MCHS, has strategically introduced a paradigm shift in caring for seriously ill people and their families. We have
1. initiated a fully staffed and professionally trained palliative care team serving the region clinically, educationally, and scholarly.
2. established a regionally represented palliative care community consortium with key stakeholders from the communities within our communities; Business, Education, Faith, Long Term Care, Pharmacy, Volunteers, and Elder Care.
3. created a position of a palliative care director of community engagement to lead the consortium and build relationships with key stake holders region wide.
4. partnered Palliative Care and Development for Philanthropic support.
5. initiated an Advance Care Planning Online Resource Center launching with public forum viewings of the documentary Consider the Conversation
6. developed the Mayo Clinic Health System Palliative Care Specialty Council with guidance from national mentors.

October marks the second anniversary of The Personal Caring Initiative and we are delighted with the changes we are experiencing in our health system. The immediate future entails increasing clinical staffing to accommodate patient demand and additional community and region wide initiatives to improve the care of seriously ill people.

Cory Ingram, M.D.
Assistant Professor of Family and Palliative Medicine
Mayo Clinic, College of Medicine

Medical Director – Palliative Care
Chair of the Palliative Medicine Specialty Council
Mayo Clinic Health System