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by Christian Sinclair

August 2016 has left the building along with a lot of heat, rain and wildfires.

Here is a recap of all of our posts from August 2016. We know there are some you may have already bookmarked, but forgot to read, or maybe you liked it so much you want to share it again.

Make sure to follow, engage, like and comment with us on Facebook, Twitter, Google+, Pinterest, Tumblr, Instagram and LinkedIN.  We always appreciate it when you recommend us to your peers and social media makes it very easy!

Communication

• Palliative Chemotherapy: An Oxymoron by Rebecca Gagne Henderson

Humanities/Media Reviews

• Redefining "Death in Dignity": Sherwin Nuland's 'How We Die' by Vivian Lam

Interview/News

• Behind the Scenes: Media Watch by Barry Ashpole

Narrative/Opinion

• What happens when it is you? by Michael Fratkin

Research/Education

• August 2016 Journal Review by Christian Sinclair
• Trisomy 13 and 18: When a lethal condition is no longer lethal by Jenni Linebarger
• Worse than Death? ...Dependence by Ross Albert
• FOUR Score: Coma scales and prognosis in the ICU by Drew Rosielle

Comment Shout-out's for July (in no particular order):
Clay Anderson, Drew Rosielle, Lyle Fettig, Anthony Back, Lizzy Miles, Gerg Gifford, Kyle Edmonds, Kathy Kastner, Karl Steinberg, Lynne Kallenbach, Emilie Clark, Robin Kleronomos, Anthony Herbert, Tom Quinn, Karen Kaplan, Lisa LaMagna, Sidnee Weiss-Domis, Daniel Miller, Robin Youlten, Rebecca Gagne Henderson, Linda Dolan, Andy Probolus, Amy Getter, Alex Smith, Gerald Tevrow, Elizabeth Lindenberger, Vikranta Sharma, Elaine Glass, Matt Rhodes, Vickie Leff, Paul Rousseau, Emily Riegel, Will Grinstead, Jeanne Phillips, Staci Mandrola, Julie Koch, Michael Pottash, Thomas Reid, Pippa Hawley, Kat Collett, Michael Fratkin, Julie Christenson and a few anonymous people.

Highlighted Comment for August 2016
Frustrations with words not living up to their promise continue to be a theme this month. Thomas LeBlanc had a great comment on the challenges with the term palliative chemotherapy.

Let’s not throw the baby out with the bathwater; the best way to palliate cancer-related symptoms is to actually treat the cancer (if it’s treatable, and if the patient is not too frail to tolerate the treatment). The enemy here isn’t the chemotherapy, it’s the inappropriate use of it in patients who are too ill, or who have resistant disease, or whose goals can’t be met by the treatment. The enemy isn’t the chemotherapy, it’s the notion that patients should be forced to choose either cancer treatment or good palliative care. Instead, I believe they should be able to get both, and we should all work together as a team, oncologist and palliative care clinicians alike, to do what’s best for each patient at each step along the way.

Social Media Highlights

• Most popular Pallimed Facebook post: Condoloneces to Amedisys hospice on the death of Bill Borne - Reached 15k+ people
• Most popular Pallimed Twitter post: We need to be frank about death with terminal patients via @newsweek - 91 Engagements
• Most popular Pallimed Instagram Post: "That's all I wanted: for someone to look at me and listen to me, but in some beautiful and artisitc way." - Gene Wilder - 453 impressions

"That's all I wanted; for someone to look at me and listen to me, but in some beautiful or artistic way." - Gene Wilder #genewilder #willywonka #quotation #quote #hpm #hapc #palliativecare #listening

A photo posted by Pallimed (@pallimedblog) on Aug 30, 2016 at 1:11pm PDT

Passionate Volunteers and Writers Wanted
Do you love hospice and palliative medicine? Got something to say or find interesting things to share? Want to reach nearly 40,000 people with your ideas? We do this with a volunteer staff of ten, but we could use more regular volunteers.

If you are interested in writing for or working with us at Pallimed please check out the Pallimed Opportunities page and complete the form at the bottom. If you want to help we have something you could do! Like write this simple monthly review post (this would be really easy to hand off)! Or join our team of social media ambassadors to help run one of our social media accounts (especially with Facebook, Pinterest, LinkedIn, Instagram and Tumblr) - we do on the job training!

Christian Sinclair, MD, FAAHPM is a palliative care doctor at the University of Kansas Medical Center and editor of Pallimed. When not advocating for health care professionals to use social media you can find him playing board games.

Image Credit: Lionello DelPiccolo via Unsplash CC0 1.0

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by Drew Rosielle

In neuro-critical care, prediction of outcomes is often tricky because of the wide variability in the ability of the brain to recover and the usual long periods needed before seeing what is the limit of recovery. Most people are familiar with the Glasgow Coma Scale, but back in 2009 Mayo Clinic Proceedings published a study of the FOUR score), which presents some prognostic data for ICU patients. FOUR = 'Full Outline of UnResponsiveness.' (It is also written as 4S. - Ed.)

This was a single institution study (Mayo Rochester) primarily designed to investigate whether the FOUR score is a reliable coma scale when applied in ICUs by non-neuroscience types (it has been studied before in neuro ICUs - this study involved non-neuroscience trained nurses, consulting docs, fellows, and intensivists in several ICUs at Mayo). Part of the context for the score is that the Glasgow Coma Scale, the most commonly used coma scale, measures verbal responsiveness - something which is difficult to do on intubated patients. The 4S measures eye response, motor response, brainstem reflexes, and respiratory pattern and assigns 0-4 ratings to each category (see graphic below). All ICU patients (not all intubated) over a 1 year time frame who had 'abnormal consciousness' and who weren't receiving pharmacologic sedation or paralysis were included for the study. Basically different ICU team members were assigned to do 4S evaluations on these patients, and interrater reliability, etc. was measured.

100 patients were evaluated - 45% intubated - with a broad range of illnesses (at least 40% had some primary CNS pathology such as strokes, 'craniotomy,' etc.). Despite the fact that they noted an inclusion criteria of 'abnormal consciousness,' about a 3rd of the patients were described as 'alert': basically all the non-alert patients either had a primary CNS pathology or anoxic or metabolic encephalopathy (as expected; those patients without those issues would be expected to either be alert or pharmacologically sedated). 33% of the patients died - all of them either by neurologic criteria or after life-prolonging treatments were withdrawn due to poor prognosis.

Basically, the 4S looked good from an interreliability, etc. standpoint, and compared favorably with the GCS. As expected, lower (worse) summative 4S scores were associated with worse outcomes including in-hospital death (e.g. every 1 point decrease in the 4S was associated with a 15% improvement in the odds of in-hospital survival). (Note that is odds not rates - most of the outcomes are presented as odds ratios and not actual event-rates.) The only rates presented are for those 9 patients with the lowest 4S scores (presumably zero): 89% died in-hospital, and one assumes that 6 of these were the ones declared dead by neurologic criteria. Notably, the in-hospital mortality for those with the lowest GCS score (3) was 71%, suggesting perhaps the 4S (as it measures more characteristics than the GCS) can more precisely characterize the very sickest.

That said, from a clinical standpoint one isn't particularly helped by new data that a patient with no signs of consciousness, withdrawal to pain, brainstem reflexes, or spontaneous respirations, without the help of sedating drugs (ie a 4S of 0), is highly likely to die. We knew that already, and of course this paper wasn't intended to really demonstrate anything other than the 4S is a reliable way to measure/stratify degrees of unresponsiveness/coma. It is a reminder to me as a reader of this research how my interests in what data I want presented (in this case gross in-hospital mortality rates for each 4S rank) as I naively hope for answers/clinically-relevant information is not what others find important, even though they have the data. The 4S seems to be a straight-forward and easy to measure coma scale, and perhaps we'll be seeing more of it, including frank outcome data.

Drew Rosielle, MD is a palliative care physician at University of Minnesota Health in Minnesota. He founded Pallimed in 2005. For more Pallimed posts by Drew click here. 

References:
Iyer VN, Mandrekar JN, Danielson RD, Zubkov AY, Elmer JL, Wijdicks EFM. Validity of the FOUR score coma scale in the medical intensive care unit. Mayo Clin Proc. 2009;84(8):694-701. doi:10.1016/S0025-6196(11)60519-3. Open Access PDF

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by Shannon Haliko

Case:
Mr. K is a 58-year-old male with diabetes and ischemic cardiomyopathy which contributed to end-stage heart failure necessitating circulatory support with a left ventricular assist device (LVAD) implanted one year ago. His post-operative course has been complicated with multiple admissions for infection resulting in several operative revisions and kidney injury. He was admitted with a similar presentation prompting a moment of reflection by his primary team.

Over the last year, Mr. K had declining involvement in his own care, which included poor attention to his medications and wound dressings. It was clear that Mr. K’s lack of involvement was contributing to his frequent admissions, but the root of Mr. K’s suspected apathy was unclear. The Palliative Care team was consulted to assess the patient’s goals of care.

Interviewing Mr. K was challenging. Though he was pleasant and cooperative, he was distractible. Attempts to elicit his values would take the listener on a long, circumferential and circumstantial path without a clear ending. Despite his confusing stories, he clearly explained a hope to regain his ability to perform tasks on his farm. He also succinctly described the importance of sharing his life with family, including several new grandchildren. While this information helped clarify his values and healthcare goals, the team questioned his cognitive ability. Because we were unable to distinguish between depression, apathy, and cognitive impairment, we asked for a formal psychiatry consult.

Mr. K described his mood as “down in the dumps” for the last two years; he felt his heart failure symptoms prevented him from performing even simple activities on his farm. Unfortunately, he had not noticed any improvement in his energy with LVAD implantation one year ago, but did reflect that he sustained damage to his liver and kidney. Despite prominent feelings related to his illnesses and poor functional status, he remained hopeful that he would recover. Though he provided an accurate general picture of his health state, he gave inconsistent or superficial answers to detailed inquiry about recent complications. He denied feelings of anxiety, hopelessness, guilt or suicidal thoughts and had not noticed any changes in appetite or sleep, or hallucinations. He still found interest in television shows and NASCAR racing.

On exam, he was disheveled and often violated social norms of the interview (interrupting his own storytelling to make an unrelated phone call, commenting on the TV programs currently showing). He had no abnormalities in muscle bulk, tone or movement. There was no dysmetria, tremor or gait disturbance but his Luria test (for executive motor control) was abnormal. His speech was broken into single sentence or phrase fragments with a rare moment of word searching with use of circumlocutions.

His affect was reactive, full and incongruent with his stated mood of depression. His thought content, while future oriented, was indeed impaired as noted by the Palliative Care team, with a particular focus on concrete thought processes. Memory of his own medical history was inconsistent, and his delayed recall of three objects was impaired. His inconsistencies also manifested when discussing insight for his own illness, with a tendency to over-simplify his condition or health consequences.


Discussion:
Mr. K’s exam is consistent with a mild neurocognitive disorder (NCD) with mixed features (concentration, executive function, and mild memory and language impairments). NCD is a new diagnosis found in the update of the DSM-V. This update of psychiatric diagnosis guidelines re-organizes the previous diagnoses of mild cognitive impairment (MCI) and dementia to a neurocognitive disorder (NCD) of either mild or major impairments. NCD is defined as “a change from previous level of function with noted impairment in one of the following domains: complex attention; learning or memory; language; perceptual-motor; social cognition and executive function”¹. The distinction between mild or major impairment is determined by the ability to live independently. Subtypes of NCD can be described by the dementia’s presumed etiology, for example Alzheimer’s type. The definition of NCD yields high inter-rater reliability among clinicians, but the diagnosis is too new to be sure of its prevalence. MCI, the closest approximation of mild NCD, has a prevalence of between 3-42% reported across studies of at-risk inpatients and outpatients.² The prognosis related to NCD is uncertain. Some patients with mild NCD progress to major NCD, but with others the disease is stable or may revert to normal cognition.

There are many hypotheses for the pathophysiology behind neuro-degeneration seen in NCD, including vascular deficits and inflammatory pathways, but no unifying theory has been confirmed. Effective pharmacologic treatment of NCD is currently lacking. Anticholinesterase inhibitors should be utilized only in mild to moderate Alzheimer’s dementia³, but recent guidelines to support this practice are either weak⁴ or discouraging⁵. Promising agents currently include noradrenergic and polyphenolic compounds (ginkgo biloba, wine and some vegetables). Non-pharmacologic therapies (exercise, diet, cognitive stimulation) show variable effects, have poor generalizability, or impermanent results. Other non-pharmacological treatments (cognitive behavioral therapy) have focused on neuropsychiatric symptoms (mood disturbance, apathy, agitation and psychosis) and show improvement in symptoms but not underlying cognitive impairments.⁶ Pharmacologic treatment of the same symptoms has not been found beneficial and may be associated with a more rapid decline⁷.
Mr. K has several risk factors for NCD (heart failure with its metabolic and perfusion derangements, atherosclerosis, bypass surgery and the LVAD itself)⁸. Up to 60% of patients demonstrate some level of cognitive deficit both before and after implantation.⁹ Additionally, depression is present in 20-30% of LVAD patients^10,11, and is often missed, misdiagnosed12 or even confused with cognitive impairment.

Given that depression and NCD often co-occur, it is important to routinely screen patients for both. The PHQ-2, a rapid two question screen for depression that has a sensitively of 97% and specificity of 96%.13 An optimal screening test for NCD remains to be determined, but the mini-Kingston standardized cognitive assessment-revised (mini-KSCAr) yields the highest sensitivity and specificity studied to date. (Detection of mild NCD: sensitivity 81% and specificity 85%; Detection of major NCD: sensitivity 100% specificity 91%. Comparators include Mini-Mental State Examination (MMSE)*, the clock drawing test (CDT), and Montreal Cognitive Assessment (MoCA))14. Identification of complex or concurrent disorders would likely benefit from referral to a specialist for standardized neurocognitive testing and treatment.

*MMSE is copyrighted - see GeriPal for more - Ed.

Case Resolution:
At examination, Mr. K agreed to pursue rehabilitation on discharge in a care facility rather than his home. He clearly described the risk, benefits and alternatives to the choice supporting our assessment of capacity for this decision. However, we expect Mr. K’s capacity will be limited for more complex decisions, and the primary team was alerted that appropriate evaluation of his capacity should be undertaken for each future healthcare decision.

References:
1. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5).; 2013. doi:10.1176/appi.books.9780890425596.744053.

2. Panza F, D’Introno A, Colacicco AM, et al. Current epidemiology of mild cognitive impairment and other predementia syndromes. Am J Geriatr Psychiatry. 2005;13(8):633-644. doi:10.1176/appi.ajgp.13.8.633.

3. Dementia | 1-recommendations | Guidance and guidelines | NICE. http://www.nice.org.uk/guidance/cg42/chapter/1-recommendations#interventions-for-cognitive-symptoms-and-maintenance-of-function-for-people-with-dementia. Accessed June 3, 2015.

4. Doody RS, Stevens JC, Beck C, et al. Practice parameter: Management of dementia (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2001;56(9):1154-1166. doi:10.1212/WNL.56.9.1154.

5. Daviglus ML, Bell CC, Berrettini W, et al. NIH state-of-the-science conference statement: Preventing Alzheimer’s disease and cognitive decline. NIH Consens State Sci Statements. 2010;27(4):1-30. Accessed June 1, 2015.

6. Sachs-Ericsson N, Blazer DG. The new DSM-5 diagnosis of mild neurocognitive disorder and its relation to research in mild cognitive impairment. Aging Ment Health. 2015;19(1):2-12. doi:10.1080/13607863.2014.920303.

7. Rosenberg PB, Mielke MM, Han D, et al. The association of psychotropic medication use with the cognitive, functional, and neuropsychiatric trajectory of Alzheimer’s disease. Int J Geriatr Psychiatry. 2012;27(12):1248-1257. doi:10.1002/gps.3769.

8. Cannon JA, McMurray JJ, Quinn TJ. “Hearts and minds”: association, causation and implication of cognitive impairment in heart failure. Alzheimers Res Ther. 2015;7(1):22. doi:10.1186/s13195-015-0106-5.

9. Petrucci RJ, Truesdell KC, Carter A, et al. Cognitive dysfunction in advanced heart failure and prospective cardiac assist device patients. Ann Thorac Surg. 2006;81(5):1738-1744. doi:10.1016/j.athoracsur.2005.12.010.

10. Baba A, Hirata G, Yokoyama F, et al. Psychiatric problems of heart transplant candidates with left ventricular assist devices. J Artif Organs. 2006;9(4):203-208. doi:10.1007/s10047-006-0353-0.

11. Rutledge T, Reis VA, Linke SE, Greenberg BH, Mills PJ. Depression in heart failure a meta-analytic review of prevalence, intervention effects, and associations with clinical outcomes. J Am Coll Cardiol. 2006;48(8):1527-1537. doi:10.1016/j.jacc.2006.06.055.

12. Boland RJ, Diaz S, Lamdan RM, Ramchandani D, McCartney JR. Overdiagnosis of depression in the general hospital. Gen Hosp Psychiatry. 1996;18(1):28-35. doi:10.1016/0163-8343(95)00089-5.

13. Maurer DM. Screening for depression. Am Fam Physician. 2012;85(2):139-144. http://www.ncbi.nlm.nih.gov/pubmed/22335214. Accessed April 22, 2015.

14. Liew TM, Feng L, Gao Q, Ng TP, Yap P. Diagnostic utility of Montreal Cognitive Assessment in the Fifth Edition of Diagnostic and Statistical Manual of Mental Disorders: major and mild neurocognitive disorders. J Am Med Dir Assoc. 2015;16(2):144-148. doi:10.1016/j.jamda.2014.07.021.

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(In preparation for the 9/17/14 #hpm Tweetchat, guest host Dr. William Rosenberg summarizes a few of the neurosurgical interventions which may be useful in palliative care. - Ed.)

There are three major ways that neurosurgery can alleviate pain:

1. Targeted Drug Delivery in which medication is delivered directly to the brain or spinal cord by way of a very small catheter placed in the spinal fluid. The catheter could be connected to a pump placed under the skin for longer term use. Alternatively, a procedure not much bigger than a spinal tap can be used to place the catheter and bring it out through the skin to an external pump. When patients require doses of opioids and other medications which give them unacceptable side-effects, like clouding of consciousness, lethargy, loss of appetite, severe constipation, targeted drug delivery can often allow caregivers to reduce or even eliminate such medications, resulting in an improved quality of life and often better pain control.

2. Neurostimulation is the use of electrical stimulation, through small electrodes placed via needle or small incision, to reduce pain. It is especially effective with neuropathic pain (the pain caused by an injured or damaged nerve that sends erroneous signals to the brain causing the perception of burning, itching ,swelling or other kinds of pain). One can stimulate a peripheral nerve, the spinal cord or even the brain (“deep brain stimulation”) to achieve pain control, depending on the circumstances.

Often neurostimulation is not considered in the context of palliative care. But, in such a setting, neuropathic pain can be difficult to address. It is possible to place a neurostimulation lead under the skin and bring it out to an external control (pulse generator). In this way, hard-to-control pain (e.g., after radiation, chemotherapy or the surgical injury of a nerve) can often be addressed without the additional incision and expense of an implanted pulse generator (as is used in non-palliative care settings).

3. Neuroablation is the interruption of certain pain pathways in the brain or spinal cord to achieve pain control. These can be very effective and often will allow the patient to drastically decrease or even eliminate the pain medication s/he is taking. There are a number of such procedures available, depending on the details of the pain. Percutaneous cordotomy, myelotomy and nucleotractotomy are outpatient, CT-guided procedures, done under local anesthesia through a needle, that interrupt the pain pathways for different locations.

Cingulotomy is a procedure done under brief general anesthesia in which a computer is used to target two areas of the brain to interrupt pathways related to suffering. It can be very effective in treating the “suffering” component of pain. Recently, it was found to be effective in treating the air hunger associated with a lung tumor in a case report (see reference here).

Radiosurgical hypophesectomy is a non-invasive, single visit, outpatient procedure targeting the pituitary gland (hypophysis). It is based on decades of experience with surgically removing the pituitary gland for diffuse pain from bone metastases (cancer that has traveled to the bone). No one knows how it works, but it can be very effective. And, since it is completely non-invasive, the risks are very low. Even pituitary function is usually preserved and, if it is affected, hormones can easily be replaced.

References and Resources


Smith TJ, Staats PS, Deer T, Stearns LJ, Rauck RL, Boortz-Marx RL, Buchser E, Català E, Bryce DA, Coyne PJ, Pool GE; Implantable Drug Delivery Systems Study Group (2002). Randomized clinical trial of an implantable drug delivery system compared with comprehensive medical management for refractory cancer pain: impact on pain, drug-related toxicity, and survival. Journal of Clinical Oncology  20 (19), 4040-9 PMID: 12351602 (OPEN ACCESS PDF)

Stearns L, Boortz-Marx R, Du Pen S, Friehs G, Gordon M, Halyard M, Herbst L, Kiser J (2005). Intrathecal drug delivery for the management of cancer pain: a multidisciplinary consensus of best clinical practices. The Journal of Supportive Oncology, 3 (6), 399-408 PMID: 16350425

Raslan AM, Cetas JS, McCartney S, Burchiel KJ (2011). Destructive procedures for control of cancer pain: the case for cordotomy. Journal of Neurosurgery, 114 (1), 155-70 PMID: 20690810

Hayashi M, Taira T, Chernov M, Fukuoka S, Liscak R, Yu CP, Ho RT, Regis J, Katayama Y, Kawakami Y, Hori T (2002). Gamma knife surgery for cancer pain-pituitary gland-stalk ablation: a multicenter prospective protocol since 2002. Journal of Neurosurgery, 97 (5 Suppl), 433-7 PMID: 12507070

What: #hpm chat on Twitter
When: Wed 9/17/2014 - 9p ET/ 6p PT
Host: Dr. William Rosenberg Follow @wsrosenbergmd
Facebook Event Listing: https://www.facebook.com/events/1443430942595064/
Topics:

T1 What has been your experience, if at all, with neurosurgical procedures for palliative care?
T2 Where do you see such procedures fitting into the overall palliative care of patients?
T3 What aspects of these procedures could be modified or changed to make them more beneficial to suffering patients?

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using nurph.com, for ease of following.

We will be posting the transcript and analytics here after the chat takes place. Chat Transcript and Chat Analytics courtesy of @Symplur

(An earlier version of this post appeared first on Dr. Rosenberg's website Center for the Relief of Pain. - Ed.)

(Edit - 9/17/2014 - added links to transcript and analytics - Ed.)

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Earlier this month the 2011 ACP annual meeting was held in San Diego.  In addition to escaping New England to Southern Cal in early April, I got to see old friends at San Diego Hospice, meet the fellows, and catch some pearls at the ACP meeting.  I wish there were more of us there tweeting and blogging, because I could not catch all the talks I wanted to.  Here are some of the articles highlighted in talks I attended that may be pertinent to our field:


Updates of Ethics, Dr. Sha reviewed key articles/events in palliative care and ethics:

• The CDC takes a stand on distributive justice during influenza pandemics in allocating ventilatory support to patients. - Article: Manuel ME Pandemic Influenza: Implications for Preparation and Delivery of Critical Care Services J Intensive Care Med. Jan 10, 2011 doi:10.1177/0885066610393314 
• Medical students who reflect, debrief with faculty about a death they experience, show more empathy and professionalism. - Kelly E, Nisker J. Medical students' first clinical experience of death. Med Ed 2010 
• Challenging autonomy in medical decision-making in critical care settings - some advocate for increased beneficence to ameliorate the distress of surrogate decision-makers. - Curtis JR, Vincent JL. Ethics and End-of-Life care for adults in the intensive-care-unit. The Lancet, Oct 2010. doi: 10.1016/S0140-6736(10)60143-2 
• Can we help the homeless complete advance directives? A study by Song and colleagues say yes! Song J, et al. Effect of an end-of-life planning intervention on the completion of advance directives in homeless persons. Ann Int Med. 2010;153:76-84.
• Other references:
• Laurey S, et al. Unresponsive wakefulness syndrome: a new name for the vegetative state or apallic syndrome. BMC Medicine. 2010; 8:68
• Powell T. Life imitates work. JAMA 2011; 305:542-43.