Highlights of the September Issue of the Journal of Pain and Symptom Management (JPSM)

Listed below are a few articles from the most recent issue of the journal:

Rehabilitation in Advanced, Progressive, Recurrent Cancer: A Randomized Controlled Trial
Louise Jones, Gail FitzGerald, Baptiste Leurent, Jeffrey Round, Jane Eades, Sarah Davis, Faye Gishen, Amanda Holman, Katherine Hopkins, and Adrian Tookman

Intentional Sedation to Unconsciousness at the End of Life: Findings From a National Physician Survey
Michael S. Putman, John D. Yoon, Kenneth A. Rasinski, and Farr A. Curlin

Parents’ Perceptions of Their Child’s Symptom Burden During and After Cancer Treatment
Lena Hedén, Ulrika Pöder, Louise von Essen, and Gustaf Ljungman

To access the articles, you must subscribe to JPSM or be a member of the American Academy of Hospice and Palliative Medicine (AAHPM). For further information on the Academy, call 847 375 4712 or visit aahpm.org.

Submitted by: David J. Casarett, MD, MA, Senior Associate Editor, JPSM

Puzzles with Missing Pieces

In my first year as attending physician in a large homecare-based hospice, I have encountered many personal and professional struggles. The biggest of these for me has been that of accountability. Having trained in a tertiary care center where most everyone comes through the emergency department, there is information galore on each palliative care and hospice patient. Recent scans, labs, consults, and evaluations are all in one glorious EHR. With one passcode entry, I have every piece of information I need to make smart, informed decisions with just about any patient. The physical exam mattered little when I could tell Mr. Smith with certainty that his CT showed a mass. I long for those days.

With my home-based hospice patients, I have some information in most cases, but in all cases it is fragmented. Patients see their PMD on occasion, but see the GI specialist for their bowel troubles, and the cancer center across town for their neoplasm. They all use a different EHR, if they use one at all. In my office, I get facsimile copies of a truncated recent history; hyperlipidemia management notes from primary care, colonoscopy notes from GI, and hand-written nursing notes from the last hospitalization, none of which add up to the complete picture of whom my patient is today. As an aside, I am sometimes taken back to my residency days when I would hold the chart at arms’ length and squint my eyes to make out a lazy physicians’ hand-written consult note. These days, if I’m really interested in what the note says, I sometimes concentrate as if it were one of those 3D “Magic Eye” pictures that suddenly appears if you do it right. Rarely do I have that kind of time (or patience) anymore. Occasionally, I’ll get a patient who hasn’t seen a doctor in decades but who is obviously dying. What they are dying of is unfortunately anybody’s guess.

Hospice patients present tougher challenges than the inpatient or recently discharged. The hospice patient with biopsy-proven cancer who follows a normal end-of-life trajectory is thankfully, the norm. There is a subset of hospice patients however, who come into program with a life-limiting illness that follow an unusual trajectory. Mrs. Smith, for instance, came onto hospice with COPD, but with the question of a lung mass that was tentatively identified on CT. Mrs. Smith refused bronchoscopy or biopsy and did not wish to talk about what may be a cancer. Three months after I received Mrs. Smith on hospice, she became paranoid and confused. Unfortunately, this lasted for several months, which, in retrospect, speaks for itself. There were oddities along the way; urinary retention, rectovaginal fistula, VRE; all in the setting of normal lab values and a patient who didn’t want to know more.

As we all know, there is a lot of financial pressure that comes with being a hospice provider. There are no CT scans in home hospice. It can be difficult to put together a reasonable story that ties all the symptoms together when they just don’t make sense. It is even harder to look a family in the eyes and say, “I have no idea what’s going on.” I’ve found that the bridge to this particular gap is accountability. I may not have the answers, but I want to be there with each new development to tell them so.

As doctors, we are supposed to have all of the answers. In truth, the fact that I often don’t can weigh on me personally.

As HPM providers, we are the few who walk with patients and families through the unknown. We put pressure on ourselves as a specialty to be the providers who can ameliorate most of what ails you. Sometimes it feels as if this pressure can be too heavy for my young shoulders. I can’t always fix it. I don’t always have the answers. But I vow to be there to tell you that myself.

Bethany C. Calkins, MD

Indianapolis, Here We Come!

Will you be joining 400 of your hospice colleagues August 29-31 at the AAHPM Hospice Medical Director Conference in Indianapolis? Several local Academy members have offered their picks for the best restaurants, greatest attractions and fun neighborhoods in the Indianapolis area. For more suggestions check out VisitIndy.com and follow @VisitIndy on Twitter. Feel free and add your favorites in the comments section.

Where to eat:
Bakersfield- fresh taco restaurant
BARcelona Tapas
Bazbeaux- pizza
Black Market- large portions, creative butcher meats and vegetables
Bluebeard- restaurant fresh and creative food
Bru Burger Bar
Capital Grille- upscale dining
Chatham Tap- English Restaurant and Pub
City Café
Datsa Pizza
Elbow Room- casual American
Fogo de Chao- Brazilian Steak House
Harry and Izzy’s- St. Elmo’s sister restaurant known for the famous super spicy shrimp cocktail
Hoaglin- breakfast
Kilroys- casual American
Libertine- old time cocktails and food like bacon flights and deviled eggs
Maxine’s Chicken and Waffles
Mesh on Mass Avenue- innovative cuisine
Morton’s- steakhouse
Oceanaire- seafood
Osteria Pronto at JW Marriott- traditional Italian
Palomino- creative Mediterranean cuisine
Patachou- breakfast
Rathskeller- German cuisine
Scotty’s Brewhouse- casual American
St. Elmo’s Steak House- reservations are required at this classic steak house
SubZero- ice cream
Yatz- New Orleans style Cajun and Creole
Yogulatte- frozen yogurt & coffee shop

Night life:
ComedySportz- catch an improv show
Indianapolis Symphony Orchestra at Circle Theater
Slippery Noodle- visit the oldest bar in Downtown Indianapolis for live blues music

Circle Center Mall
Fashion Mall at Keystone at the Crossing

Family Friendly Fun:
Banker’s Life Field House- catch a basketball game or see a concert
Central Canal- gondola rides, pedal boats, and bicycles to rent
Eiteljorg Museum- Native American and Western art collection
Indiana State Museum
Indiana War Memorial- ride elevator to top for $2 spectacular view of the city
Indianapolis Children’s Museum
Indianapolis Museum of Art
Indianapolis Zoo
White River State Park

Indians- catch a baseball game
Indianapolis 500 Track- tours and museum
Lucas Oil Stadium- watch a football game

Indy’s Cultural Districts:
Six go-to destinations for the best in dining, shopping and nightlife in Indianapolis

The Learning Curve of Fellowship

Conrad Williams IV, MD

Conrad Williams IV, MD, serves as fellow section editor on the Quarterly Editorial Board. In the Q&A below, Williams reflects on the path that led him to hospice and palliative medicine and what, as a fellow, he can expect for his future.

What compelled you to choose to specialize in this field, which is intrinsically emotionally draining?

Entering residency, I had no idea of what palliative care encompassed; to me, it was hospice care. As I learned more about the field, I quickly realized I had found my calling. In medical school, we are presented with and tested on all sorts of diseases and innumerable ways to treat the problems. In residency, however, you suddenly realize there is much more than a disease involved. Patients are not defined by their illnesses, and, especially in pediatrics, there are families that must be cared for as well. Many people choose pediatrics because kids “get better.” While this is certainly true in many cases, I quickly realized that some kids do not get better, and we often fail patients who need us most—those with chronic, life-limiting conditions. Medical school does not prepare us for that transition—we need a disease and an intervention. It is easy to talk about “the hypoplast status post Norwood,” that “CF’er who is back again because he just won’t do his daily home treatments,” or, even worse, “Bed 12.” As hospice and palliative medicine physicians, we are allowed an intimate relationship with patients and families at a time of intense vulnerability. We accompany our patients on the part of their journey that requires the most help; yet, it is the part that many providers distance themselves from because they are not prepared to care for this population.

What also excites me about the field is the potential. The trailblazers in pediatric palliative care are in the prime of their careers, affording those interested in the field an opportunity to learn alongside teams that helped define the specialty. What started as an art is gaining more and more of a scientific identity as the evidence supporting the specialty’s importance in our healthcare system quickly grows. The chance to play a role in creating an identity for what is quickly becoming a more established specialty is exciting.

Was the learning curve initially steep?

A challenge I was not expecting was the difficulty with transitioning from residency right into my fellowship. As residents, we are very task- and checklist-oriented. We get in early for rounds, focus on how to fix our patients’ diseases, and leave all the other “stuff” to social workers, case managers, bedside nurses, child life specialists, and others. Now I cannot do my rounds when our patients and families are sleeping, I cannot do an effective job without sitting down and giving them my time. I have had to make a conscious effort to be more mindful and present during my encounters. As I transition from resident to fellow, I have found it challenging to keep my mind clear and stay present during my visits with patients.

What have been some of the ups and downs?

If I could only do home visits for the rest of my career, I would be happy. To be welcomed into such a private space is an honor and allows me to get to know my patients on a new level. It places me in an comfortable environment, both physically and emotionally. Most families truly value time spent with their providers outside of the hospital.

The biggest “down” has been the geographic separation from my wife. In such an intense and emotional job, I need someone to debrief and relax with. Because my wife is also a pediatrician in fellowship and there were few options for where I could train, we are spending this year apart. Suffice to say, I am not a “phone person.” I have had to rely on coworkers and my chocolate lab, Nola.

What challenges do you anticipate as your career begins?

Fellows often find themselves entering jobs with leadership positions beyond their skills as junior faculty. Halfway through my fellowship, I have begun my job search in earnest with feelings of great anticipation accompanied by the unsettling sensation of my stomach creeping into my throat. In 6 short months, I will be faced with more than just a job as a clinician. Not only will I be developing my style as a hospice and palliative medicine physician, but I will also be labeled with titles such as team leader, administrator, educator, researcher, conflict resolver, and business planner. I will enter a whirlwind of institutional culture and politics, and I will need to remember the rules of sandbox etiquette, all while contributing to the development of a crucial and effective system of delivering high-quality palliative care to children and their families. I have begun to develop my leadership skills and create a network of mentors that can be a resource as I grow into my career.

Conrad Williams IV, MD, is a fellow section editor on the Quarterly Editorial Board. He is currently a fellow with Haslinger Family Pediatric Palliative Care Team at Akron Children’s Hospital, Akron, OH. Contact him at cwilliams3@chmca.org.

What’s Going on with Dying in America?

One of the many vexing problems in US health care is that patients repeatedly and by a wide margin express their preference for dying at home rather than in a hospital or other setting of care. However, despite that oft-expressed wish and the apparently increasing public awareness of hospice and palliative care options, most people still do not die at home. However, finally in 2011 the CDC published data that claimed an increase in people over 65 dying at home from 15% in 1989 to 24% in 2007.

Should this be cause for celebration? Apparently the answer is “maybe but maybe not”. Joan Teno and her colleagues who have tremendous experience in this area have now looked at, not only site of death, but the places of care leading up to death and the number of transitions in sites of care in the immediate pre-death period (Change in End-of-Life Care for Medicare Beneficiaries Site of Death, Place of Care, and Health Care Transitions in 2000, 2005, and 2009 JAMA, February 6, 2013—Vol 309, No. 5). Their findings are not only ambiguous, but in part troubling.

Our results confirm the CDC finding based on death certificate data that more persons aged 65 years and older are dying at home, but the rate of ICU use in the last month of life has increased, with 29.2% of decedents experiencing an ICU in the last months of life in 2009. Another indicator of change in end-of-life medical care is that 11.5% of 2009 decedents had 3 or more hospitalizations in the last 90 days of life. Hospice use increased, but 28.4% of those decedents used a hospice for 3 days or less in 2009. About one-third of these short hospice stays were preceded by an ICU stay in the last month of life. Although a hospice stay of 1 day may be viewed as beneficial by a dying patient and family, an important yet unanswered research question is whether this pattern of care is consistent with patient preferences and improved quality of life.

So what this looks like is that, while people may be dying more often at home and less often in a hospital, this change does not translate into less aggressive care at the end of life. There seems to be a significant cohort of people who are eventually getting to hospice and dying there, but only after longer in an ICU and more back and forth between care settings than ever before. As Teno says, this one day of hospice may be seen by the patient and family as beneficial and gives the patient the chance to “die in peace”- not an insignificant outcome. And maybe this is what many people mean when they say in surveys that they want to die at home. Maybe they mean that they want to keep using aggressive care right up to the end and then go to hospice to die- although even in this scenario the rise in ICU use is hard to understand. If that is, in fact, the preference of these patients, that is fully consistent with modern palliative care practice.

However, this reality is a little hard to believe. Certainly there will be occasional people who will choose this course- but so many? My fear is that for some patients the medical team is holding off having real goals of care discussions until death is imminent. I hear complaints fairly frequently from palliative care teams and hospice teams that referrals come to them much later than they would prefer. Health care chaplains have long had the same lament. It will be interesting to see if the increasing penalties for readmissions and new regulations, such as in New York State, which require patients with less than six month to live be informed of the option for hospice and palliative care will make a difference.

Until then, is it good that more people are dying at home? Given the results repeatedly expressed in surveys, probably so. But Teno’s work reminds us that there is likely a lot more work to be done until we get to the point where every patient and family is included in their care planning from the beginning of their treatment process, all options for treatment and sites of care are explored, and the number of people who are at the end of life but still transitioning in and out of ICUs better aligns with what patients and families seems to be saying they want.

George Handzo, BCC, CSSBB
President, Handzo Consulting
Senior Consultant, HealthCare Chaplaincy

The Feel-Good File

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

A Paradigm Shift in Medicine

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
The Disease Treatment Model and the Lived Experience of Serious Illness

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

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

Quality Matters: A View from the Seat at the Table

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

Too Few Gray Hairs?

“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