Monday, August 20, 2018

Does Colace (docusate) Work For Constipation? No!

by Bob Arnold (@rabob)

(This is the first post from the Pallimed Writers Group, a growing group of nearly 20 clinicians who are reviewing landmark studies and important current research. This study was highlighted in the GeriPal Top 25 articles in HPM.- Ed.)

Randomized, Double-Blind, Placebo-Controlled Trial of Oral Docusate in the Management of Constipation in Hospice Patients. Tarumi et al. Journal of Pain and Symptom Management, 2013: 45(1), 2-13.

Palliative care fellows may wonder about their attendings fixation on bowel movements. It may be because we do not ask medical students to disimpact patients any more or because, given the lack of ambulatory care many residents do, they do not see it as a big deal (Constipation a GREAT topic for those of us who like puns and dad jokes).

For patients, however, constipation is a topic they think about many times a day. It is very common (39-70% prevalence) in patients with cancer or other serious illness, particularly in elderly patients. The prevalence goes up to 80% in patients on opiates and for many of my patients, the bloating, nausea and discomfort associated with opiates are worse than the pain we are treating.

At the hospital where I work, Colace (docusate) is often used as the first treatment of constipation and/or as the drug of choice to prevent constipation. This has been despite a lack of evidence (JPSM 2000:19:130-6). I was thrilled to see this RCT of docusate and sennosides vs placebo and sennosides looking at whether docusate improved stool frequency, volume, and consistency. They found no difference in any of these variables.

Let's take a closer look using the JAMA Users' Guides to the Medical Literature:

1) Are the results valid?
     a. Was the assignment of patients to treatment randomized? Yes
     b. Were all patients who entered the trial properly accounted for and attributed for at the conclusion? Yes (and I wish I would have gotten more information.) Of the 1426 patients who were screened, only 305 met the study criteria and 80 consented. More data about why so many patients did not meet the study criteria or how the 26% who consented differed from non-consenters would be nice. Once we got to the 80 patients, the information and follow up is great (although only 73% completed the ten-day study.)
     c. Were patients, clinicians and study personnel ‘blind’ to treatment? Yes (although I would like it better if they asked patients if they got the placebo or the active drug to make sure the blinding worked.)
     d. Were the groups similar at the start of the trial? Yes; moreover, their OME, and use of other drugs were similar enough to be comfortable with the groups equivalency. It might have been nice to know how physically active both groups were and if they were from the same hospices, but now I am being a pain in the ass.
     e. Aside from the Experimental Intervention, Were the Groups Treated Equally? Yes.

2) What Are the Results?
     a. How Large Was the Treatment Effect? This was impressive. They looked at bowel movements every which way and found NO DIFFERENCE. They looked at frequency, volume, difficulty of defecation, and symptoms of constipation. There were differences in consistency (thankfully no pictures) but this was not consistent.
     b. How Precise Was the Estimate of the Treatment Effect? I have no worries about this. I might have chosen constipation symptoms as the primary outcome (and this would have required a different sample size). Given the consistency (UGH) of the findings, this does not seem to be a problem.

3) Will the Results Help Me in Caring for My Patients?
     a. Can the Results Be Applied to My Patient Care? This patient population is sicker and has more cancer than my patients. The patients were all recruited from an in-patient hospice unit where the median LOS was 16 days and 97% died during their stay. Moreover, the study population changed in the middle of the project (from requiring the patient be on opiates and have cancer) which should always make a reviewer nervous. This is going to be biggest question for many of you (although there is no reason to think that non-cancer, less sick patients will have different findings).
     b. Were All Clinically Important Outcomes Considered? Yes. I think this is a strength of the study.
     c. Are the Likely Treatment Benefits Worth the Potential Harm and Costs? Someone might say – who gives a shit? Docusate is cheap as stink (in my hospital taking it off the formulary would save less than 1000 dollars a year). And the pill does not taste as nasty as the liquid formulation (see GeriPal’s excellent laxative taste test) and is just one pill (not even that if it is given as a combination with senna).
      I still hate docusate because clinicians think they are doing something when they are not. In my hospitals, the house staff think when they are giving docusate for patients on opiates they are doing something and thus DO NOT USE ANOTHER (EFFECTIVE) LAXATIVE. This study is worth reading and quoting so people start off using the right drugs rather than letting patients get constipating and then chasing their tail.

Let’s get things moving!

Robert Arnold MD is a palliative care doctor at the University of Pittsburgh and a co-founder of VitalTalk. He loves both high and low brow comedy (The Good Place and Nanette), pop culture (the National Enquirer and Pop Culture Happy hour) and music of all kinds (not opera tho!)

Monday, August 20, 2018 by Pallimed Editor ·

Introducing the Pallimed Writers' Group

by Christian Sinclair (@ctsinclair)

We used to publish a lot more article reviews here on Pallimed. Sometimes the analysis would be quite deep and sometimes we would just lump together a while bunch of snippets from key articles. I have been keeping an ever-growing list of articles I would love to write up for the site*, but never seemed to have the time to get to them, and then new ones would come out, that I would want to write about, but they too would just get added to the list. At the end of the year, I would look back on key articles for our field and be pretty bummed out that I never got anything published here about them. A few weeks ago, I ignored my self-deprecation and put out a plea on Twitter for any interested clinicians to join a group and write together and encourage each other, and give feedback to one another.


And boom! Just like that nearly 20 people answered the call. We have our first list of articles to be published with a mix of new and old.

You can help us find good articles to cover by commenting here, or tagging @Pallimed in a tweet with your suggestions. If you are interested in joining this group we are already collecting names to join the second wave sometime this Fall. Email christian@pallimed.org or ping @Pallimed on Twtter and we will add you to the list. We have a lot of attending physicians, but only one social worker, one medical student, one fellow, and one nurse practitioner, so we are definately looking for a little diversity of professional experience.

If you have written for Pallimed before, you are not being left out. You will be getting invitations soon to join the Pallimed Writers' Group. If you know me and you are waiting for me to ask you, please do not wait. Write! It is good for your mind and body. Submit something and let's see if we can get it published.

The first review from our Pallimed Writers' Group is published today is from physician Bob Arnold on the 2013 Tarumi article on Docusate vs Placebo for constipation in the Journal of Pain and Symptom Management.

As we get more people published I will add them to alist here to make sure that this group gets credit for the work that they do for all of us.

Also, you may see an increase in emails if you subscribe, so you may want to consider changing to the MWF or weekly email options. You can find them at the bottom of your email from Pallimed.

* along with lists of books and films! Calling any humanities nerds.

by Christian Sinclair ·

Saturday, August 18, 2018

Professional Development for the Whole Team

by Karla Washington (@comokarwash)

I entered graduate social work education in 1998. St. Louis Cardinals first baseman Mark McGwire broke the single-season home run record that year. Hearings were held regarding the impeachment of President Bill Clinton, and Céline Dion released a duet with R. Kelly, forming a collaboration that probably sounds preposterous to most people younger than 25. On the technology front, social media as we know it today was years away (Mark Zuckerberg was only 14). Google itself was less than a year old. Its corporate headquarters were in a garage.

Fast forward to 2018. I used Google to obtain 100% of the facts I presented in the paragraph above; the search engine is now so ubiquitous that the term itself is used as a verb. And just this morning, I read a Twitter update supposedly posted by a celebrity cat. Professionally, in my work as a palliative care researcher, I recently completed a pilot study of a problem-solving intervention delivered entirely via technology, and I’m developing a mHealth (mobile health) tool to support rural family caregivers of hospice patients with cancer.

I asked you to join me in that walk down memory lane to make the following point: Like me, virtually everyone on every healthcare team in every health system everywhere needs continuing education. On my first day of graduate school, Google did not exist. This afternoon, I’ll be reviewing data analytics from a Facebook support group for family caregivers of people with advanced cancer. And unless it’s possible to win the lottery without actually playing, I’ll be working for at least 20 more years. I need periodic tune-ups, and so do your colleagues from all disciplines and professions represented on palliative care teams.

Below I’ve provided a few questions to consider when thinking about the professional development needs of palliative care professionals. Because I’m trained as a social worker, many of the examples I provide are discipline-specific, but the underlying concepts are more broadly applicable. If you’re in a leadership position on your team, I encourage you to give the questions below some thought. If you’re not, feel free to use this list to facilitate a conversation with those who are.

Which individuals on your team have access to professional development opportunities?

I learned long ago that worrying too much about who is getting paid what, who gets credit for what, and who is getting free lunch is a recipe for resentment, burnout, and bad patient care. At the same time, consider the message leaders send when they allocate virtually zero resources for some employees’ professional development while sending their colleagues to week-long conferences in some of the most expensive cities on the planet. There will likely always be inequities in how resources are allocated, but there may be ways that existing resources could be reallocated (or additional resources identified) to improve access to professional development for members of the team who tend to be less tangibly supported in their growth. In graduate school in the 1990’s, I learned that grief occurred in five predictable stages and that stressed out caregivers should punch pillows to relax. We now know that grief is much messier than previously thought, and research has shown that it’s a fairly terrible idea for people to rehearse violence when they are angry or frustrated. I’m sure pharmacists, chaplains, nutritionists, and others would be able to weigh in with examples of how the knowledge that informs their practice has expanded and evolved since their formal education. Patients and families receive better care from well-trained teams. We need to support all team members in access to professional development.

What are the continuing education requirements of the members of your palliative care team? How can you help?

In Missouri, where I work, it’s expensive to get licensed as a clinical social worker. I won’t bore you with the details, but the cost for someone starting out with no financial support from their employer is at least $5,000, which is a very low estimate if they pay out-of-pocket for weekly meetings with a qualified supervisor. That’s a lot. The good news is there are tons of ways to support these new professionals. Is someone on the team already licensed? (Possibly.) Can that person get trained and credentialed to provide supervision as an employment benefit for licensure candidates? (Pretty easily.) Would leadership allow them to receive licensure supervision during regular working hours? (Lots of leaders do.) Can training approved for continuing medical or nursing education also be approved for social work contact hours? (This is probably easier than you think.) The list goes on. I’m sure there are similar lists for other professionals on the team or for social workers in later stages of their careers. Palliative care professionals tend to be great problem solvers. Get them involved in brainstorming low-cost ways to support their acquisition of new knowledge, skills, and credentials.

Can you more meaningfully engage team members in shaping their own professional development?

I love conferences. I go early and/or stay late. I find conferences intellectually stimulating and return from them energized with lots of new ideas. Some people prefer to get their professional development needs met with less face-to-face socialization involved. They might prefer online trainings or access to books or journals. There are sometimes valid reasons to nudge team members toward an educational experience others know to be excellent, but often a more effective strategy is to engage team members in crafting their own professional development plan. This very importantly includes planning the logistics of how their plan will be executed. If you attend a conference, there’s a good chance you’ll need to stay in a hotel. Do I have colleagues I’d be happy to share a hotel room with? Sure. Bodies do weird things in the middle of the night, and we all look different when we first wake up, but I can name a dozen people I’d be willing to navigate that with. Is that true of everyone? Absolutely not. And the list of colleagues I’d even consider sharing a bed with is in the low single digits. I’m guessing most people would just pass on that entirely. We can’t always know what people will want, and we should avoid making blanket policies when it’s not necessary to do so. It’s probably an all-around better idea to just be transparent about available resources and let people make decisions like the professionals they are. And if they have to miss work for a professional growth opportunity – no matter how terrible it actually was while they were gone – they should not have to endure a guilt trip upon their return.

If our friend Google can be trusted, someone named Harvey S. Firestone once wrote, “The growth and development of people is the highest calling of leadership.” Even if that’s not a real person, that’s still a great quote. I am fully convinced that professional development is a vital ingredient in high-quality palliative care, and I’m so grateful to get to be a part of this vibrant, innovative, and growth-minded community. To thank you for reading this post to the very end, I looked up Harvey S. Firestone. He founded the Firestone Tire and Rubber Company in 1900. He is also the author of Men and Rubber: The Story of Business, which I hope we can all agree is a horrible name for a book, even if it is focused on professional growth.

Karla Washington, PhD, LCSW is an Assistant Professor of Family and Community Medicine at the University of Missouri where she researches interventions to support patients and families receiving hospice and palliative care. When not working or spending time with family and friends, Karla enjoys several British television shows including The IT Crowd (her all-time favorite) and, more recently, The Great British Baking Show (or, as they refer to it across the pond, The Great British Bake Off).

Photo composite created by Christian Sinclair and includes photos from Jonas Jacobsson and Tyler Callahan on Unsplash

Saturday, August 18, 2018 by Pallimed Editor ·

Wednesday, August 15, 2018

Book Review: “The Four Things That Matter Most” by Ira Byock

by Ben Skoch (@skochb)

As someone new to the field of hospice and palliative medicine, I recognize that “The Four Things That Matter Most” by Ira Byock has been around for some time. As I sit down to write this review, I’m reminded of a joke from comedian Jim Gaffigan when he referenced people who want to talk about movies many years after they are released. That being said, the book was new to me as I picked through the 10th Anniversary Edition, and it’s easy to see why this book could easily have many more anniversary editions in the coming years. I was indirectly nudged to read this work while on my inpatient hospice rotation as I counseled a patient’s loved one along with one of my attending physicians. While the specifics escape me, I recall this person having a hard time finding the right words to say to her dying spouse. My attending plucked this book off the shelf, gently held it out for this loving wife, and said, “This should help.”

Byock highlights an important premise in his opening lines when he writes, “We live each day just a heartbeat away from eternity” (xvii). I think most people in the hospice and palliative care world readily accept this. For others, it is easy to hide these thoughts in the dark recesses of the mind, which can often lead to postponement of important conversations and decisions. “It’s never too soon” to have the most important conversations with the ones you love, and as you make your way through these beautiful and sometimes heart wrenching stories, you will see why.

I’ve learned most effectively through stories during my training, when I can tie a concept to a person who I have encountered along the way, so clearly this is one reason I enjoyed this book so much. Byock drives home each of his “Four Things” with touching stories from families across the country. It’s helpful to see how different families are able to say “‘I forgive you,’ ‘Please forgive me,’ ‘Thank you,’ and ‘I love you’” in the face of some terrible emotional wounds. While these stories alone will make the book absolutely worth your time, there are a few other salient points that resonated with me, which I will share here.

A recurring theme seems basic, but it’s critical to remember: We are all human. While we live in a society that strives for perfection, none of us ever will be, and we share many of these imperfections. One such imperfection in our culture is that we are largely death-denying. We would rather do just about anything than contemplate our own mortality. This happens daily. It becomes routine. Therefore, when someone shares difficult news or negative thoughts, our immediate response is too often, “Oh don’t talk like that” or “think positive…it will get better!” As Byock notes, perhaps offhand comments from people could be best viewed as, “an invitation to listen” (15). That is, if someone shares difficult information, help explore the thoughts with something like, “tell me more about that.” There is no telling the depth of what people will share when given a chance.

Another imperfection we share is that, “as we grow up and age, each of us is emotionally scarred to some extent” (39). As part of the human condition, we will love, those we love we will hurt, and they will hurt us. All of this may initially be unintentional, but the scars can be long-lasting. Some of those cicatrices will be more readily recognizable in some people, just as it will be easier for some to share about their difficult past. In others, we may have to be discerning. “People who are nasty, mean-spirited, or greedy are often acting out their own pain” (59). Putting this another way, remember that we are all a product of our past experiences. I find that keeping this at the forefront of my mind during those “difficult patient” encounters can help get to the heart of many issues.

One concept that was entirely new to me was that of “emotional economics.” Byock shares a full chapter on this relating to forgiveness, and it is important to highlight. Consider the emotional scars mentioned previously. The longer those sit unattended to, they accrue “years of compounded emotional pain” (63). I love the analogy of using forgiveness as “a onetime cost” that can help repair all those years of hurt. This can obviously be difficult depending on what the initial insult was, and to some maybe even seem impossible. But, as is pointed out in the book, forgiveness is not absolution. Granting forgiveness to someone does not mean forget and move on. But forgiveness is a huge step toward healing. Refusing to forgive is also a decision to remain in “emotional debt.” If I think about this when talking with someone who may not have long to live, it seems like it could be extremely helpful. Encouraging family members to say “I forgive you” before a loved one dies could be helpful for the days, months, or years that the person granting forgiveness still has left to live.

I regularly hear from patients a phrase that Byock tackles head-on: “I don’t want to be a burden.” Basically, that’s not a thing. Because you are human, and because you are loved by other humans, you will be a burden. Being human will mean at some point things won't go according to plan, your body will fail, and others will have to care for you. The important point is that we can all do our best to minimize this burden on our loved ones by accepting when it is our time to be cared for by others. I have witnessed this become an extremely difficult task for people, especially when it feels like a loss of identity for that individual. Here again, patience and listening will be crucial to coming to a common ground.

Perhaps some of that identity can be maintained by practicing “authentic loving care” as described on page 158. I was struck as this was described as a process that “involves touching people tenderly.” It may seem natural and reflexive to some, but I assure you this does not happen with uniform regularity in a hospital setting. And it’s sad. I was lucky to have this modeled to me during my residency, and as I move into an attending physician role I will make it a point to pass that on to my trainees as well. Don’t be afraid to hold a patient’s hand, touch their shoulder, or one of many other things which can help someone experience human interaction. A small gesture can help a patient in a time of great confusion to remember that they are human and that they are loved.

Lastly, I can’t get enough of the following from Byock which describes why many people might choose to work in the field of hospice and palliative medicine. “It is not within my capacity to discern the ultimate meaning of life in the universe. I can only honor the mystery and hope to be of some service to others” (212). If I could go back in time and put that on my medical school resume, I’d bold and underline it because I like it so much, and it’s the very essence of what I want to do for people. What an awesome gift to be able to live in the service of others during their most critical moments. I am confident that after reading this book I will be able to help others enrich their lives, nourish their relationships, and hopefully mend old wounds even if their time may be short. I simply need to help them see The Four Things That Matter Most.

This is the first Pallimed post by Ben Skoch, DO, MBA, a Hospice and Palliative Medicine physician at the University of Kansas Medical Center. Outside of Family and Palliative Medicine, he enjoys most sports, black coffee, and most especially spending time with his wife and two adorable children.

(Links are Amazon Affiliate links which support Pallimed. Also, please shop at your local bookstore.)

Wednesday, August 15, 2018 by Pallimed Editor ·

Sunday, August 12, 2018

Pallimed Calendar of Conferences and Events



Most of the items on this calendar are focused on significant national or international conferences, but also include some historical events related to our field. Occassionally regional or local conferences may be included. You can sync this calendar with many dfferent software platforms and apps or just pick certain events to add to your calendar. This list of palliative care and hospice related events and conferences is maintained by Ishwaria Subbiah (@IshwariaMD), Allison Jordan (@doctorjordan), and Christian Sinclar (@ctsinclair).

If you would like to help, have feedback or see an error, please contact us via Twitter.

Sunday, August 12, 2018 by Christian Sinclair ·

Friday, August 10, 2018

Grief and the Healing Property of Time

by Abigail Latimer (@abbie_lcsw)

The recent article about the orca carrying her dead calf sparked a flurry of media conversation about grief. [1] As the only palliative clinical social worker in an 800-bed hospital (and former bereavement counselor), I am frequently asked by clinicians to help when family is struggling with grief. Requests also come directly from family members seeking help talking to children and understanding their own grief. Regardless of the situation, the underlying desire is the same. Everyone wants to know the “right way” to grieve and ease suffering.

Some years ago, Elisabeth Kübler-Ross published her book on death and dying based on her work with terminally ill patients.[2] Despite the wealth of information presented, people mostly remember the stages of grief. And why not? Stages help us to think of grief as a nice and tidy, forward moving process. It is comforting to think that this stage will be over and the next one will take place, hoping the “end” of this hurt will come soon. The book cautioned us that grief is not actual stages and that point has been emphasized since then.[3] Yet, the belief persists that following a death we will go through denial, anger, bargaining, depression, and acceptance, and hopefully in that order. Unfortunately, this assumption can be harmful.[4] So if grief doesn’t come in stages, what does it look like? To quote the youth of today, a “hot mess”.

It’s worth mentioning the clinical difference between “normal” and complicated grief. Complicated grief is also called: unresolved grief, traumatic grief, pathological grief, prolonged intensified grief, and abnormal bereavement.[5] About one out of ten bereaved adults will experience prolonged grief disorder.[6] In fact, the DSM-5 included “Persistent Complex Bereavement Disorder” in its proposed criteria for conditions for further study (p.789)[7]. Palliative clinicians should be trained to recognize risk factors and symptoms of complicated grief in order to not over-pathologize normal grief responses.[8][9] Although the effectiveness of preventative interventions is debated, there is some evidence symptom severity can be lessened in the short and long-term.[10] (This article will not begin to address the complexities presented in suicidal, homicidal, child or antepartum, perinatal, or postpartum bereavement.)



For most adults who experience the death of a loved one, they will move through normal grief reactions without any pathology.[11] What I try to reframe are the expectations we have regarding what’s “appropriate coping”. Sometimes I get called to a family because the patient or family is crying too much; other times it’s because they aren’t crying at all. What I want everyone to know is either response is acceptable. Grief can cause you to withdraw from people and activities, sleep too much or not enough, feel empty, guilty, depressed, and/or lost.[12] Even anticipatory grief (grief occurring before death) has been linked with these symptoms as well as worsened problem solving skills.[13] Contrary to stage theories, these symptoms can occur all at once or in loops. The low part of the loop can be intense negative feelings and then gradually lessen over time. Soon after loss or right before, these loops can be very low, occur frequently, and last for a long time. We hope as time goes on, the upswings lengthen and last longer as those intense painful feelings lessen. It can be confusing for the grieving because just when they think they’re getting better…down goes another loop. Although distressing, these feelings are all very natural and normal and it’s absurd to suggest there is some “right way” to endure it.

As hospice and palliative care providers, the goal is to alleviate suffering; but often with grief, some suffering is inevitable. Ongoing grief work is often treated by a balance between avoiding and confronting loss through various activities and tasks.[14] Mental health professionals can employ a variety of interventions through cognitive behavioral therapy, family focused, and meaning making approaches.[15] Although the treatment for normal grief reactions is debated in efficacy, it hasn’t demonstrated any harm.[16],[17],[18] Nevertheless, an undisputed and effective treatment for both complicated and normal grief is time.

There is no stage or emotion that “should” be felt and there is no timeline. By means of radical acceptance, I encourage patients and their loved ones to acknowledge what is and sit with whatever feeling they’re experiencing. I advise them to stop “should-ing” themselves, as it only worsens the guilt. Sitting with this intensity of distress is hard for those suffering and for those witnessing the suffering. But like the orca reminds us, there are no quick or easy solutions to ease the pain and suffering caused by death.

Abbie Latimer, LCSW, ACHP-SW is the Palliative Care Clinical Social Worker with University of Kentucky HealthCare and is also a second year doctoral student with the University of Kentucky College of Social Work. When she's not studying, writing, working, or doing CrossFit, she's likely binge watching old episodes of Breaking Bad and the Office. You can find here on Twitter at @abbie_lcsw

For more Pallimed articles on grief and bereavement, click here. For more articles from Abbie Latimer, click here. For more articles from social workers, click here.
References:
[1] Raphelson, S. (2018, July 31). Grieving mother orca carries dead calf for more than a week, over hundreds of miles.
[2] Kübler-Ross, E. (1969). On death and dying. New York, NY: Macmillan.
[3] Elisabeth Kübler Ross Foundation. (n.d.). Excerpt from Dr. Allan Kellehear’s foreward: “On death and dying”- 40th anniversary edition.
[4] Stroebe, M., Schut, H., Boerner, K. (2017). Cautioning health-care professionals: Bereaved persons are misguided through the stages of grief. OMEGA Journal of Death and Dying, 74(4), 455-473. Doi: 10.1177 0030222817691870
[5] Dodd, A., Guerin, S., Delaney, S., Dodd, P. (2017). Complicated grief: Knowledge, attitudes, skills and training of mental health professionals: A systematic review. Journal of Patient Education and Counseling, 100, 1447-1458.
[6] Lundorff, M., Holmgren, H., Zachariae, R., Farver-Vestergaard, I., O’Connor, M. (2017). Prevalence of prolonged grief disorder in adult bereavement: A systematic review and meta-analysis. Journal of Affective Disorders, 212, 138-149.
[7] American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing
[8] Solomon, C. G., Shear, M. K. (2015). Complicated grief. The New England Journal of Medicine, 372(2), 153-160
[9] Nielsen, M.K, Neergaard, M.A, Jensen, A.B, Vedsted, P., Bro, F., Guldin, Mai-Britt. (2017). Predictors of complicated grief and depression in bereaved caregivers: A nationwide prospective cohort study. Journal of Pain and Symptom Management, 53(3), 540-550.
[10] Wittouck, C., Van Autreve, S., De Jaegere, E., Portzky, G., van Heeringen, K. (2011). The prevention and treatment of complicated grief: A meta-analysis. Clinical Psychology Review, 31, 69-78.
[11] Jordan, A., Litz, B. (2014). Prolonged grief disorder: Diagnostic, assessment, and treatment considerations. Professional Psychology: Research and Practice, 45(3), 180-187.
[12] Clayton, P.J., Herjanic, M., Murphey, G.E., Woodruff, R Jr. (1974). Mourning and depression: Their similarities and differences. Journal of the Canadian Psychiatric Association, 19(3), 309-312.
[13] Glick, D., Motta, M., Wiegand, D., et al. (2018). Anticipatory grief and impaired problem solving among surrogate decision makers of critically ill patients: A cross-sectional study. Journal of Intensive and Critical Care Nursing, https://doi.org/10.1016/j.iccn.2018.07.006
[14] Stroebe, M. and Schut, H. (1999). The dual process model of coping with bereavement: Rationale and description. Journal of Death Studies, 23(3), 197-224.
[15] Neimeyer, R. (2014). The changing face of grief: Contemporary directions in theory, research, and practice. [Special Issue]. Progress in Palliative Care, 22(3), 125-130.
[16] Larson, D. G., and Hoyt, W. T. (2007). What has become of grief counseling? An evaluation of the empirical foundations of the new pessimism. Professional Psychology: Research and Practice, 38(4), 347.
[17] Currier, J. M., Neimeyer, R. A., and Berman, J. S. (2008). The effectiveness of psychotherapeutic interventions for bereaved persons: a comprehensive quantitative review. Psychological Bulletin, 134(5), 648.
[18] Jordan, A. H., and Litz, B. T. (2014). Prolonged grief disorder: Diagnostic, assessment, and treatment considerations. Professional Psychology: Research and Practice, 45(3), 180.

Friday, August 10, 2018 by Pallimed Editor ·

Friday, August 3, 2018

Little Legacies: The Solace and Connectedness of Ellie’s Boxes

by Kristina Newport (@kbnewport)

In 2016, the palliative care community lost a dedicated advocate and compassionate caregiver when Eloise “Ellie” Coyne died. She was well-known to the Virginia Commonwealth University (VCU) Community where she held the position of Volunteer Coordinator but her colleagues knew the all different roles she played for patients and staff on the 11 bed unit: mother, advocate, healer, listener, comforter and mother. Of all the many things Ellie provided to her patients and colleagues, perhaps the most important was here complete acceptance of all people, with an uncanny ability to meet people exactly where they were and see value in each person.

Ellie regularly provided opportunities to create legacy through story telling, artwork, photos and mementos. It was rare for a patient to leave the Thomas Palliative Care unit without a pillow case of signatures or a plaster caste with a handprint. One of the legacy projects that now lives on in her absence has been lovingly named “Ellie’s Box”.

While Ellie was still living, she worked with Palliative Care RN Dawn Quinn to create small glass stones backed by pictures or words that are meaningful to patients and their family members. On the back of the pictures, families could have the fingerprint of their loved one done in archival ink. It was just another one of the ways this caring team helped families and loved ones to make a meaningful connect in they could carry with them. “This is so much about the importance of connection,” states Quinn. “When I see someone find the "perfect stone", I feel touched with privilege to help create a new way for them to remain connected to their loved one.”

Quinn recalls a time when a family was struggling with the timing of removing their loved on from life-prolonging artificial support. After they had the opportunity to choose stones that reflected their loved one and had her finger prints placed on them, it was as if the memento they received had ensured their connection would not be lost. The family held tightly to the stones in their hands and allowed extubation and a peaceful death to proceed.

At VCU, the stones are kept in boxes that families can look through and choose from, on the palliative care unit. The idea has spread, however, throughout the hospital, to the point that the palliative team tubes the stones throughout the hospital to other units where patients are in their last hours or days.

So now, families leave VCU with a memento and memory of their loved one, due in part to Ellie’s work and influence on the providers in that system. If it had been up to Ellie, all suffering patients and families would have a hand to hold, a comforting blanket and a memento to take home with them that can continue on. It is only fitting that Ellie’s Boxes be made and offered to people in other health systems as well. It is just the way Ellie would have wanted.

Kristina Newport, MD, FAAHPM, is a palliative medicine physician in Central pennsylvania who will soon join the Palliative Care team at Penn State Health as Section Chief and Assistant Professor in the College of Medicine. You can find her on Twitter at @kbnewport. You can read her other Pallimed posts here.



Friday, August 3, 2018 by Pallimed Editor ·

Wednesday, August 1, 2018

How Proposed Changes to Medicare Documentation Regs Can Impact Palliative Care

by Amy Davis (@MaximizeQOL)

(CMS open to comments until Sep 10, 2018. See end of post for details. - Ed.)

Centers for Medicare and Medicaid Services (CMS) has proposed sweeping reforms to documentation requirements, clinician reimbursement, and the Quality Payment Program (QPP), to begin in 2019. (1)  If approved in their current form, the changes are likely to have dramatic net negative effects on outpatient palliative care reimbursement. A detailed review and analysis of all 1,473 pages of the Proposed Rule, plus its addenda, would not be practical here. The reader is referred to the complete text (1) and others’ assessments (2) reviewing its discussions of specific codes, telemedicine, unrelated Relative Value Units (RVUs), the QPP (3), and other issues less directly related to general specialty outpatient palliative care. The sections involving the new documentation and reimbursement paradigm seem poised to have the biggest impacts.

Numerous professional organizations have been persistently calling for CMS and other similar stakeholders to eliminate the ever-growing administrative tasks burdening clinicians today that are not meaningfully helping patients. For example, the American College of Physicians’ initiative (4) has avidly encouraged, among other things, the elimination of duplicative and clinically irrelevant documentation and a focus on those administrative elements demonstrated to have clinically meaningful impact.

CMS has listened to this universal outcry and is making strong efforts to adjust requirements accordingly through its Patients Over Paperwork campaign. The 2019 Proposed Rule would consolidate the complicated 1995/1997 Evaluation and Management documentation guidelines currently used to support billing for the various levels of outpatient care provided in medical offices (CPT codes 99201-99205 and 99211-99215 for new and established patient visits, respectively). Clinicians would continue to bill for the appropriate level of care provided (levels 1 through 5; see also below). However, levels 2 through 5 would only require documentation corresponding to a level 2 visit; that required for 99201 and 99211 visits would remain unchanged.

The Proposed Rule further suggests documentation of straightforward medical decision-making (5) would alternatively be acceptable, as long as medical necessity was established. Clinicians would still retain the options of adhering to current documentation guidelines or to bill based on time. Further, billing for a home visit (CPT codes 99341-99350) would no longer require explaining the medical reason the person could not be seen in the office. CMS indicates reforms pertaining to additional sites of care will be proposed in future years using a step-wise transformation model. The Proposed Rule also suggests ways to eliminate the unnecessary duplication of documentation, such as an unchanged family history, between visits and among clinicians using a shared electronic medical record. While of course other insurers and third-party companies managing the prior authorization system are not obligated to follow CMS’s lead in changing documentation requirements, CMS encourages other stakeholders to similarly reform.

CMS’s corollary to these meaningful and appreciated improvements involves uncoupling reimbursement from documentation, providing a single payment amount for level 2 through 5 visits. The Proposed Rule suggests a new, single RVU for the different levels of outpatient care provided during new and established patient visits done in medical offices, regardless of the visit level submitted. The payment amount was determined based on the weighted general frequencies visit levels 2 through 5 were submitted on all 2012 through 2017 claims. CMS accordingly proposes a RVU of 1.90 and 1.22 for new and established visits, respectively. Direct practice expense inputs were similarly established ($24.98 and $20.70). CMS applied these calculations to the available 2018 claims data and suggest the corresponding reimbursement would have been $135 for new and $93 for established level 2 through 5 visits, respectively. The complex data and calculations provided in the Proposed Rule and its Addenda suggest these amounts would generally be similar in 20196 if instituted unchanged in the Final Rule.

CMS further proposes the creation of HCPCS G-code “add-ons.” One is designed to account for the increased overall care complexity tackled by clinicians practicing certain areas of medicine, such as oncology, endocrinology, and interventional pain management, reflected in higher frequencies of level 4 and 5 visits in their claim submissions (GCG0X). Another is an attempt to counterbalance the increased practice expenditures primary care clinicians face “…coordinating patient care, collaborating with other physicians, and communicating with patients” more than other clinicians, as described on page 355 (GPC1X). Most clinicians providing outpatient palliative care appropriately almost exclusively submit visit levels 4 and 5 due to the high medical complexity of the patients involved. Further, they are generally highly involved with the same costly services also provided by primary care specialists. While the chronic care management, advanced care planning, and prolonged face-to-face service codes will remain available to all clinicians, palliative care specialists ironically do not seem to be eligible for either of these add-on G-codes. However, the overall financial impact of these G-codes is expected to be small. The proposed significantly decreased reimbursement, coupled with the G-code inclusion oversight, is likely to result in a major, if not prohibitive, deficit in our ability to provide much-needed outpatient subspecialty palliative care services. Worse, it may result in palliative medicine specialists intentionally re-classifying themselves as primary care or other alternate covered specialties in order to try to mitigate this potentially devastating financial loss.

Many in palliative care more often code visits based solely on the time spent with the patient than those practicing other specialties, primarily due to the nature of our role in helping patients and teams match provided care to the patient’s goals. CMS proposes eliminating the current policy that requires more than 50% of the time-based visit involve counseling and/or care coordination, suggesting the time spent is often a valid surrogate to the visit’s complexity. The face-to-face requirement remains unchanged. CMS also proposes to eliminate the current policy preventing two clinicians with the same Medicare enrollment specialty from receiving reimbursement for care provided on the same day. This will hopefully eliminate patients having to return to the office on a subsequent day or clinicians foregoing reimbursement for the care they provide. CMS’s formal recognition that a clinician enrolled with Medicare as an internist, for example, may also have additional training in another specialty, such as palliative care or geriatrics, is appreciated but will likely benefit a rather limited number of patients and clinicians.

The CMS paradigm transformation proposed for 2019 implementation offers a number of very positive reforms. CMS is clearly listening to the global outcry from clinician stakeholders across the healthcare spectrum, and their efforts are sincerely appreciated. However, taken in its entirety, the proposed changes as they stand are likely to result in potentially profound net negative consequences on the provision of outpatient palliative care. It is imperative that palliative care organizations, clinicians, and other stakeholders offer comments (7) to CMS before the comment period ends on September 10th to sustain and support outpatient palliative care.

(Primer on how to make comments to CMS here by lawyer Matthew Cortland (@mattbc). - Ed.)

Amy Davis (@MaximizeQOL) is a private palliative care physician in the Philly area. She sometimes thinks about overlapping serious illness & SUD and about quality improvement while gardening and enjoying her turtle

References and Resources
1 - Medicare Program; Revisions to Payment Policies under the Physician Fee Schedule and Other Revisions to Part B for CY 2019; Medicare Shared Savings Program Requirements; Quality Payment Program; and Medicaid Promoting Interoperability Program. (Prepared by the Center for Medicare and Medicaid Services, 42 CFR Parts 405, 410, 411, 414, 415, and 495 [CMS-1693-P]) Baltimore, MD: Department of Health and Human Services; July, 2018. Accessed 07/17/2018.

2 - Pear, Robert. “Sniffles? Cancer? Under Medicare plan, payments for office visits would be same for both.” NY Times 2018 July 22. Accessed 07/23/2018. Doherty, Bob. ACP Advocate Blog 2018 July 13. Accessed 07/13/2018. Young, Kerry Dooley. Medscape: Medical News 2018 July 18. Accessed 07/22/2018. CMS, Fact Sheet: Proposed policy, payment, and quality provisions changes to the medicare physician fee schedule for calendar year 2019. 2018 July 12. Accessed 07/22/2018. Patients Over Paperwork: CMS.gov

3 - Fact sheet: Proposed rule for the Quality Payment Program year 3. (Prepared by the Center for Medicare and Medicaid Services, 42 CFR Parts 405, 410, 411, 414, 415, and 495 [CMS-1693-P]) Baltimore, MD: Department of Health and Human Services; July, 2018. Accessed 07/17/2018.

4 - Erickson SM, Rockwern B, Koltov M, McLean RM, for the Medical Practice and Quality Committee of the American College of Physicians. Putting Patients First by Reducing Administrative Tasks in Health Care: A Position Paper of the American College of Physicians. Ann Intern Med. 2017; 166: 659–661.

5 - The current guidelines for a 99202 visit include an expanded problem-focused history (chief complaint and one history of present illness element), an examination with at least two (1995) or six (1997) elements, and straightforward medical decision-making (minimal diagnosis and minimal risk, with or without data). The current guidelines for a 99212 visit include two of the three: a history containing the chief complaint and one history of present illness element, one examination element, and/or straightforward medical decision-making (minimal diagnosis, one stable problem, and minimal risk, with or without data).

6 - The lack of specificity in the Proposed Rule, and anticipated changes when finalized, make conclusive detailed amount determinations impossible. Sincerest thanks to Dr. Christopher Jones and to those who wish to remain anonymous for discussing this complex topic with me.

7 - All comments received through Sept. 10 will be reviewed. Send comments via: (1) http://www.regulations.gov and follow the “submit a comment” instructions, (2) (regular mail) Centers for Medicare and Medicaid Services, Department of Health and Human Services, Attention: CMS-1693-P, P.O. Box 8016, Baltimore, MD 21244-8016, or (3) (express mail only) Centers for Medicare and Medicaid Services, Department of Health and Human Services, Attention: CMS-1693-P, Mail Stop C4-26-05, 7500 Security Boulevard, Baltimore, MD 21244-1850.

Wednesday, August 1, 2018 by Pallimed Editor ·

Monday, July 30, 2018

End-of-Life Learning from the Philosophy of Ninjas

by Lizzy Miles

If you had told me there was a parallel between the study of ninjutsu and hospice a year ago, I wouldn’t have believed you. But I have now realized that there is much to be learned from the ninja philosophy that can be applied to hospice.

It was a patient who helped me make the connection.

The chaplain and I were doing our initial assessment with a cancer patient who was younger than both of us.  I will call the patient “John.” I started the visit like I usually do, by asking the dignity question.

“What do I need to know about you as a person to give you the best care possible?”

His response was calm.  “I learned in the military, you can gain a lot of strength through suffering. It can help you see through to the other side.”

I looked over at the chaplain, intrigued. I could tell he was intrigued too.

I asked John if he had any worries or concerns. He said it he didn’t. I had heard that one sister was having a particularly tough time, so I asked John if there was anyone in his family that he worried about.  Again, in a slow, calm voice, he said, “I hope when I’m gone nothing changes, but a shift in the system can cause disarray.”

I suppose my feelings of surprise were because his manner and presence were so much calmer than patients usually are when they’ve been referred to hospice with a short prognosis. I looked over at the chaplain again and we locked eyes. Craig, our chaplain, has a PhD in Philosophy. I could tell that he was also curious and impressed with John’s demeanor.

I turned to John and told the patient as much. “The chaplain and I are looking at each other because you are a lot calmer and more at peace than most patients we meet. What’s your secret?”

John told us that he had studied ninjutsu.

Though I only met John that one time, his strong presence at that visit affected me. I was so curious about ninjutsu because I really knew nothing about it except what I had seen in movies and television, which couldn’t be more misleading. I searched online, and found an article that introduced me to the spiritual component of ninjutsu training. I then checked out several books from the library and dug in.

According to Dr. Masaaki Hatsumi, the last surviving grandmaster of the ancient art on ninjutsu, there are multiple theories of the evolution and origin of ninjutsu. Going back almost 1,000 years there was a time in Japan where feudal lords ruled through terror. Ninjutsu was created as a martial art focused on self defense against oppressors. Along with the physical training, there was a focus development of mental fortitude (Hatsumi, 1988 p. 19-21).

First and foremost: “The ninja are not members of a circus. Nor are the ninja robbers, assassins or betrayers. The ninja are none other than persons of perseverance or endurance.” (Hatsumi, 1988 p. 77)

Secondly, “…true ninjas began to realize that they should be enlightened on the laws of humanity. They tried to avoid unreasonable conflicts or fighting…The first priority to the ninja was to win without fighting, and that remains the way.” (Hatsumi, 1988 p.23)

What was of greatest interest to me in the books was the details of mental training that went along with the physical training in ninjutsu. Much of what we see in hospice goes beyond the physical as well, and I saw many parallels.

Here are the gems I found:

Ninja philosophy: “The objectives of the ninjas are: first, to use ninjutsu to infiltrate the enemy’s camp and observe the situation.” (Hatsumi, 1988 p. 111).
How it applies to hospice: Everyone involved in a hospice situation, including the patient, their loved ones, and the staff, are observing everyone else.
* The patient often can be stuck in a role of observation whether they chose to or not because they may be too tired to interact, or the family will talk in front of them to staff.
* The family is often on high alert, watching the patient for symptoms or watching the staff and timing our responses.
* The staff members are observing the patient for signs of pain or distress and watching family for signs of psychosocial distress.
Interventions: Be deliberate on the task of observation. Imagine taking the bird's eye view. Sometimes we can be so focused on what we need to do or say that we forget to check in. Make a mental note for yourself to observe before you speak or act.

Ninja philosophy: “In ninjutsu this is no fixed or permanent, ‘this is what it is’. Forget the falsehood of fixed things.” (Hatsumi, 2014, p.46)
How it applies to hospice: This is already my favorite insight with hospice. The longer I’ve been doing hospice, the more I keep learning what I don’t know. I’ve written about assumptions that we have about dying, how the dying may not want to be in control, and the emotions the dying might be feeling. Still, I keep discovering more and more variations in the way that people die – both in timing and symptoms.
Interventions: Be mindful of any time you find yourself feeling certain about a patient’s condition or what will happen. Reflect on the times you have been wrong about what you thought you knew.

Ninja philosophy: “First, forget your sadness, anger, grudges, and hatred. Let them pass like smoke caught in a breeze” (Hatsumi, 1988 p. 123).
How it applies to hospice: It is not uncommon for patients to go through a life review process in which they may have feelings of anger, guilt, or shame. Sometimes they take out their emotions out on us. Friends and family too may have memories of past hurts that come up during this time. Hospice staff are sometimes put in the position where we have to wear a mask to hide whatever might be happening to us outside of work.
Interventions: Work on your awareness of when your feathers are getting ruffled by a patient. Recognize that their attitude towards you may reflect on their own internal state of mind rather than a defect of your own. Be mindful of your reactions to stressful situations.

Ninja philosophy: “We say in Japanese that a presentiment is ‘a message conveyed by an insect.’ For example, when someone is dying, his family or close friends he really loved, can feel something is happening. We say than an insect has conveyed a message to them. It makes us believe that one can communicate through the subconscious” (Hatsumi, 1988 p. 72).
How it applies to hospice: If you have been working in hospice long enough, you have to acknowledge there are unusual coincidences, synchronicities, signs, and moments of instinct. There are stories where patients have predicted the timing of their own death, stories about someone dying just when a loved one arrived or left, and stories about spirit presences in the room.
Interventions: Be open to the idea that there are forces beyond what we understand. Remember that patients and families may have belief systems different from our own.

Ninja philosophy: “The first important aspect of ninjutsu is to maintain calmness in the body, and endurance in the heart” (Hatsumi, 2014 p.169).
How it applies to hospice: The connection with this one to hospice seems obvious to me. How many patients do we have with anxiety? From my experience, this feels like one of the most common symptoms across diagnoses, and understandably so. The mind/body connection is most apparent with COPD patients who are short of breath and then feel anxiety about being short of breath and then become even more breathless. We know that they are creating their own cycle, but sometimes we have difficulty helping them find their calm.
Interventions: Start the conversation with patients about anxiety at a time when they are not anxious. Ask them how they calm themselves when they are feeling anxious. If they don’t know how to answer that question, then encourage them to think on it for a while. I sometimes joke with patients that I am giving them “homework.” This goes for staff too. Do you know what brings you calm? How can we be educators if we don’t practice what we preach?

Ninja philosophy:  “Nothing is so uncertain as one’s own common sense or knowledge. Regardless of one’s fragile knowledge one must singlemindedly devote oneself to training, especially in times of doubt. It is of utmost importance to immerse and enjoy oneself in the world of nothingness” (Hatsumi, 1988 p. 65-66).
How it applies to hospice: Patients and families do not get to a point of acceptance of death overnight. For patients and families to reach acceptance they need to sit with the uncomfortable feelings. Slowly, they get used to the idea that this is really happening. When patients start sleeping for longer periods of time, both the patient and the family are learning to separate from one another.
Interventions: Be patient with the time it takes for our patients and families to come to acceptance. Realize that for some of them, the introduction of hospice may have been the first time they truly contemplated mortality. They haven’t trained for it like we have. Those who work in hospice and see death and dying on a regular basis can forget what it feels like to be in this situation.

Ninja philosophy: “Ultimately the responsibility for your training is your own” (Hoban, 1988, p. 172).
How it applies to hospice: Remember not to project your own ‘right way to die’ onto a patient. Consider this: some people actually do want to die in a hospital setting! Some patients do want a room full of people there with them. Some people want the television on to Fox news.
Interventions: Ask the patient about their preferences, rather than assuming you know what they want because it’s what you would want. Self-reflect on suggestions you make to patients and families to ensure you're not projecting your own belief system.

References
Hoban, J. (1988). Ninpo: Living and thinking as a warrior. Chicago: Contemporary Books.
Hatsumi, M. (1988). Essence of ninjutsu: The nine traditions. Chicago: Contemporary Books.
Hatsumi, M. (2014). The complete ninja: The secret world revealed. New York, NY: Kodansha USA.

Photos via Unsplash. Some photos have been cropped.

Moon via Clayton Caldwell 
Owl via Philip Brown
Butterfly via Nathan Dumlao
Smoke via Alessio Soggetti 

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW


Monday, July 30, 2018 by Lizzy Miles ·

Saturday, July 7, 2018

Book Review: “Everything Happens For A Reason and Other Lies I’ve Loved” by Kate Bowler

by Andrew Garcia (@ndyG83)

“We can focus on your comfort always means we’re giving up.” I can’t count how many times I’ve heard this sentiment from both patients and other healthcare providers, and to read it both frustrated and encouraged me at the same time. It’s frustrating because to know that what I do, as a palliative care physician, to help patients and their families during some of their darkest, scariest, heartbreaking and most painful moments, is seen as 'giving up' when it couldn’t be any more different. Yet, I also find it encouraging because it reminds me that there is much work left to be done on educating everyone on the importance of Hospice and Palliative Medicine (HPM).

Everything Happens For A Reason and Other Lies I’ve Loved” is Duke Divinity history professor Kate Bowler’s personal perspective on how being diagnosed with cancer disrupted her "seemingly perfect life" and forced her to question what matters most when it comes down to the very real fact that she is dying. Her perspective is real and authentic, and at times unapologetic in its portrayal of her interactions with family, friends, and the medical community. For example, she writes, “She moves through the pleasantries with enough warmth to suggest that, at least on social occasions, she considers herself to be a nice person” describing an interaction during a post-op appointment with a PA. Stories of this nature are always a good reminder that what we do and how we are around patients has a larger impact on them than, we are able to anticipate, or even be aware of.

I find it’s always important to listen to a person’s story, especially when it comes to anything they consider “life-changing,” regardless if that is something we would also agree as being “life-changing.” Perspectives matter, and in healthcare, at times, we can get so caught up with our own perspectives we fail to realize other’s. This is something which doesn’t just affect healthcare providers and Kate is very aware of this as well when writing, “I keep having the same unkind thought – I am preparing for death and everyone else is on Instagram. I know that’s not fair – that life is hard for everyone – but I sometimes feel like I’m the only in the world who is dying”. In a sense she is right, our world is what we see and create with our own eyes and experiences, and Kate is the person “dying” in her world, so to see people who aren’t central to her story living as if nothing is wrong, well I can’t imagine just how frustrating that would be.

As an HPM clinician, empathy is central to what we do. We connect with patients on a different level than many other providers. We seek out - or better yet - we crave that personal connection with patients so we can know and understand what is important to them, who is important to them, and why. We can’t just know the who and what, we need the why, and Kate does an amazing job at sharing enough of her personal life story to allow us to understand why certain decisions in her care are made and also why she views certain interventions, or lack of, as “giving up”. It reminds us that people are a sum of their experiences, and the decisions they make when “push comes to shove” are largely based on those experiences.

I was a bit disappointed after finishing the book, since I assumed the book, given the title, would focus on what healthcare providers, and people in general, should avoid saying to patients dealing with any terminal illness. To my dismay, this was not the case. Sure there are interactions in the book that allow you to see just how “annoying” certain phrases can be, but the majority of the “pearls of wisdom” are left to an appendix at the end of the book. Like, why we should never say “Well, at least…” to any person (or patient) ever.

At the end of the day, if you are a person who is interested in reading the very personal journey of a person facing a very serious and life-changing cancer diagnosis, in an entertaining, heartbreaking yet reassuring and authentic manner, it is well worth the read.

Andrew Garcia MD completed a fellowship in Hospice and Palliative Care at the University of Minnesota in 2018. Interest in include health care disparities around end-of-life care. He likes to tweet at random and can be found on Twitter at @ndyG83

(You can see more of Kate Bowler's writing at her website and blog and podcast. You can also find her on Twitter (@KatecBowler). - Ed.)

(Note- Some links are Amazon Affiliate links which help support Pallimed. We also suggest for you to support your local bookstore. - Ed.)

Saturday, July 7, 2018 by Christian Sinclair ·

Friday, July 6, 2018

True Confessions On Why I Prescribe Things Without 'Evidence'

by Drew Rosielle

We have a 'required reading' list for our fellowship, which includes a bunch of what I think are landmark or otherwise really important studies. One of them is this very well done RCT of continuous ketamine infusions for patients with cancer pain, which showed it to be ineffective (and toxic).

We also recently have seen another high-quality study published with negative results for ketamine. This was a Scottish, multi-center, randomized, placebo-controlled, intention-to-treat, and double-blinded study of oral ketamine for neuropathic pain in cancer patients. The study involved 214 patients, 75% of whom were through cancer treatments and had chemotherapy-induced peripheral neuropathy (CIPN), and the median opioid dose was 0 mg. They received an oral ketamine (or placebo), starting at 40 mg a day, with a titration protocol, and were followed for 16 days.

There were exactly zero measurable differences in outcomes between the groups (on pain, mood, or adverse effects). Zip.

All this got me thinking about a conversation I had with a palliative fellow this year, who, upon reading the continuous infusion study, confronted me with the question - Why do you even still use ketamine, then? The answer to this has a lot to do with the nature of evidence and how that is different for symptom management than it is for other outcomes, as well as the challenging reality of the placebo effect in everything we do.

I should note that you can 'dismiss' these studies based on generalizability (and plenty of people do), i.e., "The infusion study was well-done, but it's a protocol that I don't use, therefore I can ignore it." This very detailed letter to the editor about the infusion study does just that, for instance. Or, that the oral ketamine study was really a study about CIPN, and virtually nothing has been shown to be effective for CIPN, except maybe duloxetine (barely), and so it's not generalizable beyond that, and can be summarily ignored.

All this is valid, to be sure -- it's always important to not extrapolate research findings inappropriately, but honestly the reason I still prescribe ketamine sometimes has little to do with this, and has everything to do with the fact that I have observed ketamine to work and believe it works despite the evidence. Which is a pretty uncomfortable thing to admit, what with my beliefs in science, data, and evidence-based medicine.

Perhaps.

The challenge here is that when it comes to symptom treatments us clinicians are constantly faced with immediate and specific data from our patients as to whether our treatments are working. This is a very different situation than a lot of other clinical scenarios for which we lean heavily on research statistics to guide us. Note that it's not a bad thing we're confronted with this data (!), it just makes it difficult to interpret research sometimes.

Let's start with research which involves outcomes which are not immediate. E.g., does statin X, when given to patients for secondary prevention of myocardial infarction, actually reduce the number of myocardial infarctions (MI) or prolong survival?  We can only answer that question with research data because when I give statin X to an actual patient, I have zero way of knowing if it is 'working.' If they don't ever have another MI I'll feel good, but that may take years and decades to even find out. In fact, it's nearly incoherent to even talk about that outcome for my patient, because we think about those sorts of outcomes as population outcomes because that's how they are studied. E.g, we know that if we give statin X or placebo to a population of patients (who meet certain criteria) for Y number of years, that the statin X group will have some fewer number of MIs in it than the placebo group. That's what we know. And because some patients in the placebo group don't have MIs and some in the statin X group do have MIs, we actually cannot even conclude for our own patient whether statin X helped them, even if they never have another MI, because maybe they wouldn't have had an MI anyway. That is, it's a population-based treatment, with outcomes that only make sense on the population level, even though of course we and our patients very much hope that they individually are helped by the drug. Supposedly precision/personalized medicine is going to revolutionize all this, and maybe it will, but it hasn't yet.

Contrast this to symptom management. My patient is on chemotherapy and they are constantly nauseated. I prescribe a new antiemetic -- let's call it Vitamin O just for fun. Two days later I call them up, and they tell me: "Thanks doc, I feel a lot better, no more vomiting and I'm not having any side effects from the med." Or they tell me: "Doc, the Vitamin O just made me sleep all day and it didn't help the nausea one bit."  I have immediate, actionable, patient-specific, and patient-centered data at my fingertips to help me judge if the treatment is effective/tolerable/worth it. It feels very different than prescribing statin X, in which all I have is the population data to go by.

So then why do symptom research at all if all we have to do is just ask our patients?

Obviously, it's not that simple, and research is critically important. For one, placebo-effects are hugely important for symptom research, in fact, they dominate symptom research. Blinded and controlled studies are critical in helping us understand if interventions are helpful above and beyond placebo effects (we should all be skeptical/agnostic about any symptom intervention which is not studied in a blinded and adequately controlled manner). Research also helps us get a general idea of the magnitude of clinical effects of certain interventions. Comparative research (of which there's very little, but it's really important) helps guide us towards which interventions are most likely to be the most helpful to our patients. E.g., which antiemetic is most likely to help the largest number of my patients going through a certain situation (so as to avoid painful delays as we try out ineffective therapies)? Research also obviously helps us understand side effects, toxicities -- hugely important.

But...if I thought all of the above were sufficient, I'd still never prescribe ketamine, or for that matter methylphenidate, because the placebo-controlled, blinded studies don't actually indicate they are effective over placebo (let's be honest palliative people, when we actually read the high-quality methylphenidate studies, there's very little there to suggest we should ever prescribe it).

That leaves me though with this belief, based on patient observation, that it still works, damn the data. What do I make of that? I want to be clear, I don't prescribe ketamine a lot, just the opposite, but there are times when you are desperate, you are faced with a patient in an intractable, painful situation, and you're running out of moves to make to improve the patient's life, and the reality is I sometimes will prescribe ketamine then, and my observation is that it's sometimes hugely helpful, enough so that I keep on using it.

And I honestly don't know what this represents - is it that complex phenomenon called the placebo-effect that decides to show up every now and then (although for these patients you wonder why the placebo-effect didn't show up on the 5 prior treatments you threw at them)? Is it that I'm 'just' making them euphoric and I'm not actually helping their pain (although honestly, I think it's impossible to draw a hard line between the two)? Or is it the fact that for presumably complex genetic neurobiological reasons, while ketamine is ineffective toxic for the majority of patients out there, it is also really effective/well-tolerated for a minority of our patients, and that's the sort of thing that it's tough to parse out in trials, because the small number of responders is overwhelmed by the strong majority of non-responders.

I like to tell myself it's the latter, although I need to admit that probably a lot of the time it is placebo-effects. None of us should be happy about prescribing drugs with real side effects, and we must recognize the possibility for patient harm 'just' for placebo effects. (Which, incidentally, is why I'm perfectly ok using lidocaine patches sometimes even when I just assume it's a placebo - because of the near zero chance of harm to the patient. True confessions.)

But, to emphasize my point, if it is the latter (some drugs like ketamine and methlyphenidate do actually really help a minority of patients but are toxic to most and so it's tough to appreciate the impact based on clinical trial research), that emphasizes the critical observation about why high-quality clinical research is important - it helps us know which interventions we should be doing routinely and early, and which should be at the bottom of the bag, to be used rarely, and with great consideration.

But, given that this is true confessions day, I still don't think methylphenidate is something to be rarely used. In fact, it's one of the few things I do in which I routinely have patients/families enthusiastically tell me thank you that made a huge difference. (If you're curious those things are 1) talking with them empathetically and clearly about what's going on and what to expect with their serious illness, 2) starting or adjusting opioids for out of control pain, 3) olanzapine for nausea, and 4) methylphenidate.) Like, all the time. Like, they come back to see me in a couple weeks with a big smile on their face, so glad I started the methlyphenidate. Happens a lot (not all the time, but enough of the time). A lot more than with gabapentin or duloxetine or many other things I also prescribe all the time which have 'good evidence' behind them. It happens enough that I've asked myself What data would convince me to stop prescribing it to my patients? And I don't have an answer for that, apart from data suggesting serious harm/toxicity (which none of the RCTs have shown).

I'm very curious as to people's thoughts about all this and look forward to hearing from you in the comments!

Drew Rosielle, MD is a palliative care physician at the University of Minnesota Health in Minnesota. He founded Pallimed in 2005. You can occasionally find him on Twitter at @drosielle. For more Pallimed posts by Drew click here.

Friday, July 6, 2018 by Drew Rosielle MD ·

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