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.
[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,
[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:

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) 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.

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.


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 ·

Saturday, June 30, 2018

Let's Stop Claiming That Palliative Care Improves Survival

by Drew Rosielle

Hospice and palliative care community, I'm calling for a moratorium on all blanket, unqualified claims that hospice and palliative care improve survival.

Let's just stop doing this.

There has never been any actual evidence that palliative care (PC) interventions improve survival in patients, but since the landmark Temel NEJM 2010 RCT of early outpatient palliative care for lung cancer patients showed a clinically and statistically significant improvement in longevity in the PC arm, I have heard and all read all sorts of statements by palliative people and all sorts of others (hospital executives, policy makers, oncologists) in all sorts of venues (local talks, national talks, webinars, newspapers, etc) along the lines of 'palliative care helps patients with cancer live longer.' I've even heard the results discussed as evidence that hospice helps cancer patients live longer.

We should have never done this, and if you're still doing it, please stop.

To begin with, 'palliative care' isn't a single thing. It's not like studying enoxaparin, or nivolumab, or olanzapine, where you can to a reasonable extent assume that if it helps patients in Lille, France or Boston, MA, it will likely help your similar patients in your practice wherever. Palliative care is just not like that - it is complex, and local conditions are very important, and it is impossible to make broad generalizations about PC in general from a single study at a single institution. Some PC research involves full interdisciplinary teams doing their thing; some are one or two disciplines; some involve telemedicine, care coordination, etc. You just can't generalize these sorts of interventions to 'PC' in general because it can mean so many different things.

Plus, the Temel study was only a single disease, and their nicely done follow-up study which broadened the patient population presumably failed to show any survival difference (because they haven't published that result that I'm aware of).

There is an exceedingly thin quantity of additional PC research showing improved survival.  Most importantly I think is Bakitas' ENABLE III study which, notably, did not compare PC to usual care but early PC to PC 3 months later in cancer patients and showed prolonged survival. Curiously, it didn't show any difference between groups in any other outcome (not in QOL, symptoms, intensity of EOL care, chemo in the last 14 days of life, hospice enrollment)! There is this secondary analysis of the study arguing that the survival benefit was mediated by depression, which sure maybe, except that the actual stable itself didn't show any change in mood between groups. So, it's messy, right, and at the end of the day one is left thinking that the survival improvement is curious, and you don't really know what to make of it (and not left to strongly endorse broad, unqualified claims that PC makes people live longer).

There is also this somewhat famous study purporting to show that hospice extends survival in CHF and cancer patients. Besides being industry funded (NHPCO) and using data that are nearly 20 years old now, it uses a statistically complex, opaque, retrospective design using Medicare data, that is really difficult to understand for us non-biostaticians. It's a tough question to study after all -- without randomization which would be ethically and practically challenging, how do you compare survival in patients without a clear time zero. I.e., if time zero is when someone enrolls in hospice, what is the comparable time zero for someone who never enrolls in hospice? How do you capture them at the time when they are 'equally sick' to someone who happens to enroll in hospice. You can't, thus the statistically complex study design. I'm not criticizing the study, but I am very much arguing that it's not the sort of research we translate into broad claims that 'people live longer on hospice.'

The vast majority of studies of PC intervention either don't report survival, or if they do have a neutral affect on it. Although it's notable that while everyone knows about the Temel 2010 study, hardly anyone mentions the really well done randomized, controlled trial of home-based palliative care which showed all these great outcomes (patient satisfaction, health care utilization), but also, oops, showed shorter survival in the palliative care intervention group. (You can enjoy this cranky letter to the editor about this written by Andy Billings and Craig Blinderman, as well as the authors' response, here. I really miss Andy's constant, erudite crankiness.)

Given how heterogeneous PC is, what would constitute adequate evidence that 'PC' actually prolongs survival? I think it would be one of two things, neither of which exists.

One would be a large number of single institutional studies of PC interventions which show prolonged survival (and, concomitantly, an absence of numerous single institution studies showing the opposite). How many? I don't know, but a lot more than we have now. Think about how many studies we have of PC interventions, from all over the world, in different patient populations, inpatient and outpatient, including both trials and observational research, which show improvements in some patient-centered outcome like quality of life. A lot, so many in fact that it's notable when one doesn't show such an outcome. We don't have anything close to this for survival outcomes.

In fact, someone went ahead and did a very nice meta-analysis of all these (mostly single institution) palliative trials, which shows just how great we are at improving all sorts of awesome outcomes, just not survival.

The second would be a large, multi-institutional, multi-regional study of some sort of PC intervention showing improved survival. That doesn't exist.  We do have it for resource utilization - such as this multi-regional study by Sean Morrison published in 2008. Additionally, resource utilization outcomes are like QOL outcomes - they are a dime a dozen (we have dozens of studies of PC interventions, of many different shapes and sizes, from all over the world, showing differences in resource utilization).

At the end of the day I of course hope PC interventions prolong survival, but I'd be pretty surprised if that panned out. Most of our patients want to live longer with a reasonable quality of life, and I think we should be satisfied with the 'helping them have better QOL part.' We should react with curiosity about any new single-institutional study which shows improved survival, just as we should with similar studies that show decreased survival. Not anything to celebrate or bemoan.

Thing is, we have a lot to be proud of. A lot that we do well, and that we have all sorts of evidence supporting us in. Without qualification, we can go around saying Palliative care improves the quality of life of patients with serious illness. Seems good enough to me.

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.

Saturday, June 30, 2018 by Drew Rosielle MD ·

Thursday, June 14, 2018

Don't ask a dying man if he wants bacon or sausage

by Lizzy Miles

It has been four years since I first wrote the article “We Don’t Know Death: 7 Assumptions We Make about the Dying” for Pallimed. You would think that with four more years of experience I would feel more confident in my knowledge about my job and my patients. I don’t.

In fact, I’m still uncovering assumptions that I make when working with patients who are dying.

Recently, I discovered Assumption #8: Dying patients want to be in control.

I had so many reasons and examples to believe this, from the very beginning of my hospice work. I came to this conclusion after just a short time volunteering. One of the hospice patients I visited would have me adjust the height of her socks continuously for ten to fifteen minutes. At first I didn’t understand and I thought to myself that she must be a little obsessive. Then I had this a-ha moment.

She can’t control the big things, so she wants to control the little things.

This assumption held up for a while. I would have frustrated caregivers who would tell me that their dying loved one was impossible and demanding over little stuff: the lights in the room, the arrangement of the drapes. These caregivers would be exasperated. I would validate their feelings of frustration, but also encourage them to empathize. I’d tell them that it’s tough to be dying. The dying need to control what they can. Often this worked to provide some relief to the caregiver, if only briefly.

Slowly, though, my solid belief in the dying person’s desire for control began to unravel. True, there are some patients who still very much want to be in control…but not everybody.

Everything came to a head when I met “John.” I asked him the dignity question, like I always do. He scowled at me.

“How dare you ask me such a deep question. How am I supposed to answer that?” His was one of the most difficult assessments I had to make because he didn’t like questions. He told me his wife asked too many questions. He told me he wasn’t doing well, but “there’s no point to talk about it.”

Later that day, his wife (I’ll call her “Sally”) came into the inpatient unit, and I returned to the room to meet her.  We sat on the couch across the room while John was finishing a visit with a Pastor. Sally talked about how sweet John used to be. She said lately though he had been taking his anger out on her. We had moved to his bedside when Sally said to me, “All I ask is whether he wants bacon or sausage and he yells at me.”

At this point, John rolled his eyes.

I looked at him, and then after reviewing our first interaction in my head, it dawned on me. He is overwhelmed. Unlike other patients who want to control every little thing, John was irritated by the decisions he had to make. I turned to Sally and said, “I know you are trying to please him and give him what he wants, but right now, he has the weight of the world on his shoulders. The act of deciding whether he wants bacon or sausage is so insignificant to him right now.”

I looked over and John was nodding vigorously. Sally was listening intently. “But what do I do? I want to make things easier for him.”

Side note: Surprisingly, we can learn things from television medical dramas. I had been watching The Good Doctor and there had recently been an episode about how a doctor with Asperger’s was irritated with being asked questions. Another doctor realized that giving him statements, rather than questions, are better.

So I suggested to Sally. “Don’t ask him whether he wants bacon or sausage. You pick what you’re making and tell him, ‘I’m going to make you bacon and eggs.’ If he doesn’t want that, he will let you know.

John nodded vigorously again and said emphatically, “Oh yeah I would.” Both were smiling. We were then able to move on to life review and by the end of the visit, the grumpy patient was calling me “Darling.”

So how do you navigate learning and understanding patient preferences to have control or give up control? They aren’t always able to tell you but it's not hard to figure out if you're looking for it. Generally, I would say to start with the premise (okay yes, assumption) that they do want to feel in control.

For the patient who wants control:

  • Frequently reinforce that they are in charge.
  • If the family tries to take over conversation, always look to the patient until the patient verbally defers. (One exception is if there is a cultural component that an established family point person represents the patient).
  • Ask permission before you sit.
  • Ask permission to visit.
  • Don’t assume they want the television or the lights on/off. Ask.
For the patient who is tired of decisions:
  • Consider how you might get information by making statements instead of asking questions. Say: “I wondered how you were doing today.” If you raise your voice at the end of the statement, it’s still a question. Try saying the statement and then sitting with the silence. A non-answer might be an answer in itself.
  • If you get more than one “I don’t care” as an answer to a question of choice, be mindful of decision fatigue. Tell the patient what you’re going to do and leave space for them to state a preference.
  • Listen for cues from the family indicating that they’re having newfound interpersonal communication issues and provide education when appropriate.
  • Know that when patients express untruths ("lies") it might be a sign of question fatigue.

  • Photo credit: bacon by Andrew Ridley on Unsplash
    Photo credit: trees by Evan Dennis on Unsplash
    Photo credit: breakfast by Karolina Szczur on Unsplash

    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

Thursday, June 14, 2018 by Lizzy Miles ·

Friday, June 8, 2018

Pallimed Birthday - Lucky 13

by Christian Sinclair

Anniversaries are a fun time to celebrate, but the fun ones end in numbers in 0 or 5. For other anniversaries, it is a good time to take stock, reflect on the past and look towards the future.

Today is our 13th anniversary of Pallimed, which Dr. Drew Rosielle started in 2005 when blogs were THE thing to do in social media. We also spent many of those early years helping people understand the power of communication through social media with projects like #hpm chat on Twitter, encouraging tweeting from conferences and the advocacy power of our Pallimed Facebook page. With that focus, we have drifted away from original content being the main thrust of our efforts, but have still strived to create good content with strong posts from great writers like Lizzy Miles and Drew Rosielle among others. We are still dedicated to the website and will continue to post always.

Of course, this effort does not happen without the work of many people. I am indebted to Lizzy Miles (Pallimed editor), Megan Mooney-Sipe (Lead Facebook Contributor), Meredith MacMartin and Renee Berry (#hpm chat) for leading some of the core projects of Pallimed. A big thank you to other volunteers who have helped with various projects in the past year including: Jeanette Ross, Kristi Newport, Ashley Deringer, Gary Hsin, Joe Hannah, Lori Ruder, Niamh van Meines, Emily Escue, Ben Skoch, Jen Bose, Liz Gundersen, David Buxton, SarahScottDietz, Sonia Malhotra and Vivian Lam.

Since Pallimed has always been a volunteer effort, we are of course on the lookout for great new volunteers to join us and if you have been a part of Pallimed in the past, we would always welcome you back. If you have a great idea for a series of posts, podcast, videocast, journal club, book review, film review, journal article review, this is a great place to publish it. If you are not the creative type, there are a ton of admin projects that need to get done behind the scenes. Many hands make light work and I can tell you it is a blast being part of a team that makes a big difference...together. We have an audience of over 50,000 across all of our platforms so if there is something that needs to be said, we can help you say it. If you are not sure what to say, I have plenty of writing assignments where I am looking for writers. As a bonus, this work can be used for academic promotion if that is something you need. I've seen work for Pallimed get cited in promotion applications!

So the state of the blog is steady. We are staying the course, but always on the lookout for other smart, dedicated, passionate people who want to make a difference for palliative care and hospice. Let me know if that is you.

Christian Sinclair, MD, FAAHPM is the Editor-in-Chief of Pallimed. He is always surprised he wrote the most for Pallimed when he had infant twins in his house.

Friday, June 8, 2018 by Christian Sinclair ·

Pallimed | Blogger Template adapted from Mash2 by Bloggermint