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focus on publications not from the major palliative care journals.  It is aimed at health care professionals who work with people nearing the end of life."},"link":[{"rel":"http://schemas.google.com/g/2005#feed","type":"application/atom+xml","href":"https:\/\/www.pallimed.org\/feeds\/posts\/default"},{"rel":"self","type":"application/atom+xml","href":"https:\/\/www.blogger.com\/feeds\/13495125\/posts\/default\/-\/pediatrics?alt=json-in-script\u0026max-results=6"},{"rel":"alternate","type":"text/html","href":"https:\/\/www.pallimed.org\/search\/label\/pediatrics"},{"rel":"hub","href":"http://pubsubhubbub.appspot.com/"},{"rel":"next","type":"application/atom+xml","href":"https:\/\/www.blogger.com\/feeds\/13495125\/posts\/default\/-\/pediatrics\/-\/pediatrics?alt=json-in-script\u0026start-index=7\u0026max-results=6"}],"author":[{"name":{"$t":"Drew Rosielle MD"},"uri":{"$t":"http:\/\/www.blogger.com\/profile\/04345646798042773615"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"32","height":"32","src":"\/\/3.bp.blogspot.com\/-sdxTTBPb3Kw\/UddApiGn9-I\/AAAAAAAABLE\/mriu5xh44dA\/s113\/ea37b7645cd78e7867d246cd755bc8d4.jpeg"}}],"generator":{"version":"7.00","uri":"http://www.blogger.com","$t":"Blogger"},"openSearch$totalResults":{"$t":"66"},"openSearch$startIndex":{"$t":"1"},"openSearch$itemsPerPage":{"$t":"6"},"entry":[{"id":{"$t":"tag:blogger.com,1999:blog-13495125.post-105745156587232645"},"published":{"$t":"2020-09-24T16:44:00.000-05:00"},"updated":{"$t":"2020-09-24T16:44:04.321-05:00"},"category":[{"scheme":"http://www.blogger.com/atom/ns#","term":"gynecology"},{"scheme":"http://www.blogger.com/atom/ns#","term":"obstetrics"},{"scheme":"http://www.blogger.com/atom/ns#","term":"palliative care"},{"scheme":"http://www.blogger.com/atom/ns#","term":"pediatrics"},{"scheme":"http://www.blogger.com/atom/ns#","term":"prenatal"},{"scheme":"http://www.blogger.com/atom/ns#","term":"riley"}],"title":{"type":"text","$t":"Obstetrics and Gynecology Needs Palliative Care"},"content":{"type":"html","$t":"\u003Cdiv class=\"separator\" style=\"clear: both;\"\u003E\u003Ca href=\"https:\/\/1.bp.blogspot.com\/-hud0FPuft0k\/X20S32YIfKI\/AAAAAAAC8rE\/1WXkCDwoWSIyVBLmpgidBn4S_GAfSjGbgCLcBGAsYHQ\/s800\/Clinical%2BPractice%2BGuidelines%2Bfor%2BQuality%2BPalliative%2BCare%2B%25281%2529.png\" style=\"clear: right; display: block; float: right; padding: 1em 0px; text-align: center;\"\u003E\u003Cimg alt=\"\" border=\"0\" data-original-height=\"800\" data-original-width=\"800\" src=\"https:\/\/1.bp.blogspot.com\/-hud0FPuft0k\/X20S32YIfKI\/AAAAAAAC8rE\/1WXkCDwoWSIyVBLmpgidBn4S_GAfSjGbgCLcBGAsYHQ\/s320\/Clinical%2BPractice%2BGuidelines%2Bfor%2BQuality%2BPalliative%2BCare%2B%25281%2529.png\" width=\"320\" \/\u003E\u003C\/a\u003E\u003C\/div\u003Eby Nathan Riley\u0026nbsp;\u003Cbr \/\u003E\u003Cbr \/\u003E\u003Cdiv\u003E\"Can you all, please, just leave us alone?\"\u003Cbr \/\u003E\u003Cdiv\u003E\u003Cbr \/\u003E\u003C\/div\u003E\u003Cdiv\u003EOne particular experience with the death of a newborn stands out in my mind. Moments after birth the baby was breathless, and the neonatology team could not intubate. All of the kingdom’s pediatric surgeons and other specialists rushed to labor and delivery to no avail. The baby was born with a four centimeter gap in his trachea, an irreparable condition. The mother sat there, holding her dying baby as he took his last breaths while physicians, nurses, and residents were busy as usual. Click-clacking away on computers. Adjusting blankets. Asking questions. Rearranging surgical instruments. This bustle continued until she repeated herself a little more forcefully: “LEAVE US ALONE!” \u003Cbr \/\u003E\u003Cbr \/\u003EThis experience illustrates how, in a mother’s moment of suffering, a room full of prolific fixers, doers and problem-solvers came up empty-handed. While the loss of a newborn is a relatively rare occurrence, suffering - physical, emotional, psychosocial, or spiritual - is common in the world of women’s health. Likewise, if our only goal on labor and delivery is “healthy baby and healthy mom,” we are without recourse when the normal hazards of being human – many of which are completely out of our control - befall us.  \u003Cbr \/\u003E\u003Cbr \/\u003EAs an obstetrician and palliative medicine specialist, I often wonder how we might approach these challenging scenarios differently. My palliative medicine training taught me that not every problem can - or should - be fixed. My time with patients is often just as well spent sitting in silence as they process the emotions that come with bad news. Even my approach to invasive exams, pregnancy, birth, and pain management is met with an open mind and conversation before putting my steel instruments or medicines to use. After all, a “good outcome” is variable and highly dependent on the patient’s values and goals, and I cannot uphold these values without first building a relationship.  \u003Cbr \/\u003E\u003Cbr \/\u003ETo illustrate how obstetrics and gynecology might be improved through a palliative care touch, let us take a look at one of the most common diagnoses that OBGYNs face in their daily work lives: early pregnancy loss.  \u003Cbr \/\u003E\u003Cbr \/\u003EStatistically, ten percent of pregnancies end early as a spontaneous abortion or as a “blighted ovum”, in which case the embryo does not develop at all. The diagnosis is thus all too familiar to us providers, but rarely do we consider its gravity on our patients. \u003Cbr \/\u003E\u003Cbr \/\u003EThe typical clinical routine after a positive over-the-counter pregnancy test is as follows. The patient is greeted on crinkly white paper and positioned in stirrups while the busy clinician offers congratulations. The clinician lubricates and inserts an ultrasound probe into her vagina, swiftly waving the wand around to assess her anatomy. If unable to identify a viable embryo inside the uterus, the clinician resorts to various platitudes to communicate the findings. We are not trained to address anger, sadness, despair, or to consider that this news might even bring relief. In my OBGYN training, my preceptors modeled how to deftly fill any lull in conversation left by the wake of the bad news with generic consolations followed by a list of management options.  \u003Cbr \/\u003E\u003Cbr \/\u003E\u003Ci\u003EMaybe she is facing financial hardship due to the cost of infertility treatments? Maybe this same thing happened in the past and she nearly died from blood loss as a result of a “routine” dilation and curettage? Have you explored whether this is even a desired pregnancy? \u003C\/i\u003E\u003Cbr \/\u003E\u003Cbr \/\u003EA palliative approach to early pregnancy loss would be predominated by conversation, storytelling, and connection, all before a woman is even asked to undress from the waist down. It would include extensive information gathering in order to guide the diagnostic imaging process and align any conversation thereafter with the patient’s expectations and hopes. Early pregnancy failure can be catastrophic to the patient and their partner, and the delivery of this news requires patience and empathy. As with a cancer diagnosis, a patient may not be ready to hear everything that immediately follows the delivery of bad news. With this in mind, it would be better to discuss management options once the patient has had a few moments to process the news, perhaps in an adjacent room away from happily pregnant women or crying newborns. The palliative approach may even include a social worker or chaplain on standby to meet the great psychological, emotional, and spiritual needs for which other clinicians are ill-equipped. \u003Cbr \/\u003E\u003Cbr \/\u003EAs OBGYNs, we are privileged to play a role in patients’ most intimate experiences, which are often rife with fear, hesitation, and humanity. Our practice ranges from management of suspicious masses to therapeutic abortion, from infertility to debilitating pelvic pain. We are also responsible for guiding conversations around life-limiting or life-threatening prenatal diagnoses. \u003Cbr \/\u003E\u003Cbr \/\u003EChallenging experiences – including rare fetal malformations and the all too common early pregnancy loss – abound in women’s healthcare, and many of these experiences lead to varying degrees of worry and suffering on the part of our patients. The adoption of a palliative approach has the potential to transform obstetrics and gynecology to a patient-centered discipline rooted in compassion and informed by our patients’ values. \u003Cbr \/\u003E\u003Cbr \/\u003EAnd yes, when occasional tragedies arise, we must also learn that in birth – as with death – not being able to fix a problem does not imply failure or inadequacy. Sometimes holding space for these tender moments is the only thing to do, and it can be so therapeutic. \u003Cbr \/\u003E\u003Cbr \/\u003E\u003Ci\u003ENathan Riley, MD, is an OBGYN and hospice physician with Hosparus Health in Louisville, KY. He also works remotely as a telehealth palliative care physician for Resolution Care.\u003C\/i\u003E\u003Cbr \/\u003E\u003Cbr \/\u003E\u003Cmeta content=\"summary\" name=\"twitter:card\"\u003E\u003C\/meta\u003E\u003Cmeta content=\"@pallimed\" name=\"twitter:site\"\u003E\u003C\/meta\u003E\u003Cmeta content=\"Obstetrics and Gynecology Needs Palliative Care\" name=\"twitter:title\"\u003E\u003C\/meta\u003E\u003Cmeta content=\"A physician writes how palliative care skills and values can better inform obstetric care.\" name=\"twitter:description\"\u003E\u003C\/meta\u003E\u003Cmeta content=\"https:\/\/1.bp.blogspot.com\/-hud0FPuft0k\/X20S32YIfKI\/AAAAAAAC8rE\/1WXkCDwoWSIyVBLmpgidBn4S_GAfSjGbgCLcBGAsYHQ\/s800\/Clinical%2BPractice%2BGuidelines%2Bfor%2BQuality%2BPalliative%2BCare%2B%25281%2529.png\" name=\"twitter:image\"\u003E\u003C\/meta\u003E\u003Cmeta content=\"https:\/\/www.pallimed.org\/2020\/09\/obstetrics-and-gynecology-needs.html\" name=\"twitter:url\"\u003E\u003C\/meta\u003E\u003C\/div\u003E\u003C\/div\u003E"},"link":[{"rel":"edit","type":"application/atom+xml","href":"https:\/\/www.blogger.com\/feeds\/13495125\/posts\/default\/105745156587232645"},{"rel":"self","type":"application/atom+xml","href":"https:\/\/www.blogger.com\/feeds\/13495125\/posts\/default\/105745156587232645"},{"rel":"alternate","type":"text/html","href":"https:\/\/www.pallimed.org\/2020\/09\/obstetrics-and-gynecology-needs.html","title":"Obstetrics and Gynecology Needs Palliative Care"}],"author":[{"name":{"$t":"Pallimed Editor"},"uri":{"$t":"http:\/\/www.blogger.com\/profile\/11358791266969988517"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"media$thumbnail":{"xmlns$media":"http://search.yahoo.com/mrss/","url":"https:\/\/1.bp.blogspot.com\/-hud0FPuft0k\/X20S32YIfKI\/AAAAAAAC8rE\/1WXkCDwoWSIyVBLmpgidBn4S_GAfSjGbgCLcBGAsYHQ\/s72-c\/Clinical%2BPractice%2BGuidelines%2Bfor%2BQuality%2BPalliative%2BCare%2B%25281%2529.png","height":"72","width":"72"}},{"id":{"$t":"tag:blogger.com,1999:blog-13495125.post-2896769846917961849"},"published":{"$t":"2018-09-28T11:37:00.002-05:00"},"updated":{"$t":"2021-04-06T23:28:56.146-05:00"},"category":[{"scheme":"http://www.blogger.com/atom/ns#","term":"communication"},{"scheme":"http://www.blogger.com/atom/ns#","term":"journal article"},{"scheme":"http://www.blogger.com/atom/ns#","term":"learner"},{"scheme":"http://www.blogger.com/atom/ns#","term":"medical student"},{"scheme":"http://www.blogger.com/atom/ns#","term":"NICU"},{"scheme":"http://www.blogger.com/atom/ns#","term":"open access"},{"scheme":"http://www.blogger.com/atom/ns#","term":"pallimed writing group"},{"scheme":"http://www.blogger.com/atom/ns#","term":"pediatrics"},{"scheme":"http://www.blogger.com/atom/ns#","term":"sheehan"}],"title":{"type":"text","$t":"The Power of a Pause"},"content":{"type":"html","$t":"\u003Cdiv class=\"separator\" style=\"clear: both; text-align: center;\"\u003E\u003Ca href=\"https:\/\/4.bp.blogspot.com\/-0D8zAIS9vFI\/W65U3ji6FGI\/AAAAAAAAAMw\/j0kNpD4VIckyDslXT2q4CSEZziqd_jViwCLcBGAs\/s1600\/pallimed%2Bwriters%2Bgroup%2B%25281%2529.png\" imageanchor=\"1\" style=\"clear: right; float: right; margin-bottom: 1em; margin-left: 1em;\"\u003E\u003Cimg border=\"0\" src=\"https:\/\/4.bp.blogspot.com\/-0D8zAIS9vFI\/W65U3ji6FGI\/AAAAAAAAAMw\/j0kNpD4VIckyDslXT2q4CSEZziqd_jViwCLcBGAs\/s320\/pallimed%2Bwriters%2Bgroup%2B%25281%2529.png\" width=\"320\" height=\"320\" data-original-width=\"800\" data-original-height=\"800\" \/\u003E\u003C\/a\u003E\u003C\/div\u003Eby Kayla Sheehan (\u003Ca href=\"https:\/\/twitter.com\/kksheehan\"\u003E@kksheehan\u003C\/a\u003E) \u003Cbr\u003E\u003Cbr\u003EOctober TW, Dizon ZB, Arnold RM, Rosenberg AR. \u003Ca href=\"https:\/\/jamanetwork.com\/journals\/jamanetworkopen\/fullarticle\/2687051\"\u003E\u003Ci\u003ECharacteristics of Physician Empathetic Statements During Pediatric Intensive Care Conferences With Family Members: A Qualitative Study\u003C\/i\u003E\u003C\/a\u003E. JAMA Network Open. 2018;1(3):e180351. doi:10.1001\/jamanetworkopen.2018.0351 \u003Cbr\u003E\u003Cbr\u003EAsk any patient what qualities they desire in a physician, and empathy will almost always make the list. A physician’s ability to demonstrate empathy has been \u003Ca href=\"http:\/\/journals.sagepub.com\/doi\/abs\/10.1177\/0163278704267037\"\u003Eshown to significantly impact patient outcomes\u003C\/a\u003E\u003Csup\u003E1\u003C\/sup\u003E, \u003Ca href=\"http:\/\/www.jabfm.org\/content\/24\/6\/665.short\"\u003Eincrease patient satisfaction\u003C\/a\u003E\u003Csup\u003E2\u003C\/sup\u003E, and \u003Ca href=\"https:\/\/journals.plos.org\/plosone\/article?id=10.1371\/journal.pone.0061526\"\u003Eraise physician “compassion satisfaction,” which may hinder burnout\u003C\/a\u003E (3). Though much debate surrounds empathy’s teachability, learning how and when to make empathetic statements is a crucial aspect of physician training. Many of us struggle with finding the right thing to say, but \u003Ca href=\"https:\/\/jamanetwork.com\/journals\/jamanetworkopen\/fullarticle\/2687051\"\u003Ea recent open access study published in JAMA Network Open\u003C\/a\u003E shows there may be more power in pauses made after empathetic statements than in the words themselves.  \u003Cbr\u003E\u003Cbr\u003EThe study recorded 68 pediatric intensive care unit conferences over four years. Transcripts of every meeting were made, and empathetic statements were noted using the infamous NURSE criteria (naming, understanding, respecting, supporting, exploring). “Missed opportunities” to express empathy were noted as well. Empathetic statements were placed into two categories, “buried” and “unburied.” A buried statement was one in which the physician expressed empathy, but did not allow time for the family to respond. This most commonly occurred with the physician immediately segueing into clinical jargon, but was also counted as buried if another member of the team interrupted, or if the physician finished the statement with a closed-ended question.  \u003Cbr\u003E\u003Cbr\u003E\u003Cdiv class=\"separator\" style=\"clear: both; text-align: center;\"\u003E\u003Ca href=\"https:\/\/2.bp.blogspot.com\/-eSX9Ht74HTc\/W65X6swtNiI\/AAAAAAAAANc\/iojXlsw0UTYTmNGplXBU720AgdN_0GG2QCLcBGAs\/s1600\/image%2B1.png\" imageanchor=\"1\" style=\"margin-left: 1em; margin-right: 1em;\"\u003E\u003Cimg border=\"0\" src=\"https:\/\/2.bp.blogspot.com\/-eSX9Ht74HTc\/W65X6swtNiI\/AAAAAAAAANc\/iojXlsw0UTYTmNGplXBU720AgdN_0GG2QCLcBGAs\/s640\/image%2B1.png\" width=\"600\" height=\"172\" data-original-width=\"1600\" data-original-height=\"458\" \/\u003E\u003C\/a\u003E\u003C\/div\u003E\u003Cbr\u003E\u003Cbr\u003ETranscript analysis showed that physicians are fairly good at identifying when to express empathy, taking advantage of 74% of the opportunities analyzers identified. However, almost 40% of these statements were buried, and “medical talk” accounted for the vast majority of buried statements (95%). Interestingly, non-physician team members (typically a social worker or nurse) spoke only 5% of the time, but when they offered empathy, they did so unburied 87% of the time, further demonstrating the importance of a multi-disciplinary team in fully supporting patients and their families.  \u003Cbr\u003E\u003Cbr\u003E\u003Cdiv class=\"separator\" style=\"clear: both; text-align: center;\"\u003E\u003Ca href=\"https:\/\/4.bp.blogspot.com\/-RTBfr4euMck\/W65Yfh_ZYKI\/AAAAAAAAANo\/5szVGMwWJn4uNsBa8F0XMG_kRY4hHNgJgCLcBGAs\/s1600\/image%2B2.png\" imageanchor=\"1\" style=\"margin-left: 1em; margin-right: 1em;\"\u003E\u003Cimg border=\"0\" src=\"https:\/\/4.bp.blogspot.com\/-RTBfr4euMck\/W65Yfh_ZYKI\/AAAAAAAAANo\/5szVGMwWJn4uNsBa8F0XMG_kRY4hHNgJgCLcBGAs\/s640\/image%2B2.png\" width=\"600\" height=\"248\" data-original-width=\"1600\" data-original-height=\"662\" \/\u003E\u003C\/a\u003E\u003C\/div\u003E\u003Cbr\u003E\u003Cbr\u003EPhysicians have a wealth of medical knowledge to share, but timing is paramount, and tacking jargon onto the end of a well-intentioned empathetic statement may prevent patients and families from even recognizing the empathetic effort at all. In October’s study, when physicians made unburied empathetic statements, families were 18 times more likely to respond with additional information, to express their fears, and to discuss their goals. Clear communication is an obvious cornerstone of the physician-family relationship, and while buried empathetic statements may be better than no expressions of empathy at all, they may leave families with a feeling of being unheard and ignored.  \u003Cbr\u003E\u003Cbr\u003E\u003Cdiv class=\"separator\" style=\"clear: both; text-align: center;\"\u003E\u003Ca href=\"https:\/\/3.bp.blogspot.com\/-UIawdYmRRKM\/W65WnIyqE0I\/AAAAAAAAAM8\/54ZNX96xHXwkJmh4woHMxzlH2T1OdUAwACLcBGAs\/s1600\/pallimed%2Bwriters%2Bgroup%2B%25282%2529.png\" imageanchor=\"1\" style=\"clear: right; float: right; margin-bottom: 1em; margin-left: 1em;\"\u003E\u003Cimg border=\"0\" src=\"https:\/\/3.bp.blogspot.com\/-UIawdYmRRKM\/W65WnIyqE0I\/AAAAAAAAAM8\/54ZNX96xHXwkJmh4woHMxzlH2T1OdUAwACLcBGAs\/s320\/pallimed%2Bwriters%2Bgroup%2B%25282%2529.png\" width=\"320\" height=\"320\" data-original-width=\"800\" data-original-height=\"800\" \/\u003E\u003C\/a\u003E\u003C\/div\u003E\u003Cbr\u003E\u003Cbr\u003EThough a busy clinician may not feel they have the time to open the Pandora’s box of family concerns and fears, investing time in “a pause” may pay dividends for all parties involved. For physicians, better communication skills have been shown \u003Ca href=\"https:\/\/link.springer.com\/article\/10.1007\/s11606-016-3597-2\"\u003Eto decrease instances of burnout, lower rates malpractice suits, and raise patient satisfaction scores\u003C\/a\u003E\u003Csup\u003E4\u003C\/sup\u003E. Meanwhile, the family leaves these conversations feeling heard and understood, and the patient receives care tailored to them, with every fear, concern, and hope kept in mind.  \u003Cbr\u003E\u003Cbr\u003EIf, as cellist Yo-Yo Ma would assert, “music happens between the notes,” perhaps the heart of medicine lives in the pause.  \u003Cbr\u003E\u003Cbr\u003EMore \u003Ca href=\"https:\/\/www.pallimed.org\/search\/label\/sheehan\" target=\"_blank\"\u003EPallimed posts from Kayla Sheehan can be found here.\u003C\/a\u003E\u0026nbsp;More \u003Ca href=\"https:\/\/www.pallimed.org\/search\/label\/journal%20article\" target=\"_blank\"\u003Ejournal article reviews can be found here.\u003C\/a\u003E More \u003Ca href=\"https:\/\/www.pallimed.org\/search\/label\/communication\" target=\"_blank\"\u003Eposts on communication can be found here.\u003C\/a\u003E\u003Cbr \/\u003E\u003Cbr\u003E\u003Cbr\u003E\u003Ci\u003EKayla Sheehan is a third-year medical student at California Northstate University. She enjoys singing, sharp cheddar, and long walks with her Australian Shepherd, Posey.\u003C\/i\u003E\u003Cbr\u003E\u003Cbr\u003E\u003Cb\u003EReferences:\u003C\/b\u003E\u003Cbr\u003E\u003Cbr\u003E1) Kim SS, Kaplowitz S, Johnston MV. \u003Ca href=\"http:\/\/journals.sagepub.com\/doi\/abs\/10.1177\/0163278704267037\"\u003EThe effects of physician empathy on patient satisfaction and compliance\u003C\/a\u003E. Eval Health Prof. 2004 Sep;27(3):237-51. PubMed PMID: 15312283. \u003Cbr\u003E\u003Cbr\u003E2) Pollak KI, Alexander SC, Tulsky JA, Lyna P, Coffman CJ, Dolor RJ, Gulbrandsen P, Ostbye T. \u003Ca href=\"http:\/\/www.jabfm.org\/content\/24\/6\/665.short\"\u003EPhysician empathy and listening: associations with patient satisfaction and autonomy\u003C\/a\u003E. J Am Board Fam Med. 2011 Nov-Dec;24(6):665-72. doi:10.3122\/jabfm.2011.06.110025. PubMed PMID: 22086809; \u003Cbr\u003E\u003Cbr\u003E3) Gleichgerrcht E, Decety J (2013) \u003Ca href=\"https:\/\/journals.plos.org\/plosone\/article?id=10.1371\/journal.pone.0061526\"\u003EEmpathy in Clinical Practice: How Individual Dispositions, Gender, and Experience Moderate Empathic Concern, Burnout, and Emotional Distress in Physicians\u003C\/a\u003E. PLoS ONE 8(4): e61526. https:\/\/doi.org\/10.1371\/journal.pone.0061526 \u003Cbr\u003E\u003Cbr\u003E4) Boissy, A., Windover, A.K., Bokar, D. et al. \u003Ca href=\"https:\/\/link.springer.com\/article\/10.1007\/s11606-016-3597-2\"\u003ECommunication Skills Training for Physicians Improves Patient Satisfaction\u003C\/a\u003E. J Gen Intern Med (2016) 31: 755. https:\/\/doi.org\/10.1007\/s11606-016-3597-2 \u003Cbr\u003E\u003Cbr\u003EAltmetric for this study: October TW, Dizon ZB, Arnold RM, Rosenberg AR. \u003Ca href=\"https:\/\/jamanetwork.com\/journals\/jamanetworkopen\/fullarticle\/2687051\"\u003E\u003Ci\u003ECharacteristics of Physician Empathetic Statements During Pediatric Intensive Care Conferences With Family Members: A Qualitative Study\u003C\/i\u003E\u003C\/a\u003E. JAMA Network Open. 2018;1(3):e180351. doi:10.1001\/jamanetworkopen.2018.0351\u003Cscript type=\"text\/javascript\" src=\"https:\/\/d1bxh8uas1mnw7.cloudfront.net\/assets\/embed.js\"\u003E\u003C\/script\u003E\u003Cdiv class=\"altmetric-embed\" data-badge-type=\"donut\" data-altmetric-id=\"44608895\" \/\u003E\u003C\/div\u003E \u003Cmeta name=\"twitter:card\" content=\"summary\" \/\u003E\u003Cmeta name=\"twitter:site\" content=\"@pallimed\" \/\u003E\u003Cmeta name=\"twitter:title\" content=\"The Power of a Pause\" \/\u003E\u003Cmeta name=\"twitter:description\" content=\"Medical student Kayla Sheehan reviews recent research showing that pauses allow patients and families to express their concerns.\" \/\u003E\u003Cmeta name=\"twitter:image\" content=\"https:\/\/4.bp.blogspot.com\/-0D8zAIS9vFI\/W65U3ji6FGI\/AAAAAAAAAMw\/j0kNpD4VIckyDslXT2q4CSEZziqd_jViwCLcBGAs\/s320\/pallimed%2Bwriters%2Bgroup%2B%25281%2529.png\" \/\u003E\u003Cmeta name=\"twitter:url\" content=\"https:\/\/www.pallimed.org\/2018\/09\/the-power-of-pause.html\" \/\u003E"},"link":[{"rel":"edit","type":"application/atom+xml","href":"https:\/\/www.blogger.com\/feeds\/13495125\/posts\/default\/2896769846917961849"},{"rel":"self","type":"application/atom+xml","href":"https:\/\/www.blogger.com\/feeds\/13495125\/posts\/default\/2896769846917961849"},{"rel":"alternate","type":"text/html","href":"https:\/\/www.pallimed.org\/2018\/09\/the-power-of-pause.html","title":"The Power of a Pause"}],"author":[{"name":{"$t":"Pallimed Editor"},"uri":{"$t":"http:\/\/www.blogger.com\/profile\/11358791266969988517"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"media$thumbnail":{"xmlns$media":"http://search.yahoo.com/mrss/","url":"https:\/\/4.bp.blogspot.com\/-0D8zAIS9vFI\/W65U3ji6FGI\/AAAAAAAAAMw\/j0kNpD4VIckyDslXT2q4CSEZziqd_jViwCLcBGAs\/s72-c\/pallimed%2Bwriters%2Bgroup%2B%25281%2529.png","height":"72","width":"72"}},{"id":{"$t":"tag:blogger.com,1999:blog-13495125.post-6641574978557639961"},"published":{"$t":"2018-09-21T07:00:00.000-05:00"},"updated":{"$t":"2018-09-21T09:06:15.489-05:00"},"category":[{"scheme":"http://www.blogger.com/atom/ns#","term":"international"},{"scheme":"http://www.blogger.com/atom/ns#","term":"pediatrics"},{"scheme":"http://www.blogger.com/atom/ns#","term":"remke"}],"title":{"type":"text","$t":"International Palliative Care Education - EPEC-Peds"},"content":{"type":"html","$t":"\u003Cdiv class=\"separator\" style=\"clear: both; text-align: center;\"\u003E\u003Ca href=\"https:\/\/1.bp.blogspot.com\/-bZqFGJjeJUo\/W6T54aQPgqI\/AAAAAAACaZg\/xhIEORuhQlIYXCoK-mQUhvuQJdeC_0qfwCLcBGAs\/s1600\/InternationalPalliative%2BCare%2BEducation.png\" imageanchor=\"1\" style=\"clear: right; float: right; margin-bottom: 1em; margin-left: 1em;\"\u003E\u003Cimg border=\"0\" src=\"https:\/\/1.bp.blogspot.com\/-bZqFGJjeJUo\/W6T54aQPgqI\/AAAAAAACaZg\/xhIEORuhQlIYXCoK-mQUhvuQJdeC_0qfwCLcBGAs\/s320\/InternationalPalliative%2BCare%2BEducation.png\" width=\"320\" height=\"320\" data-original-width=\"800\" data-original-height=\"800\" \/\u003E\u003C\/a\u003E\u003C\/div\u003EBy Stacy S. Remke (\u003Ca href=\"https:\/\/twitter.com\/StacyRemke\" target=\"_blank\"\u003E@StacyRemke\u003C\/a\u003E) \u003Cbr \/\u003E\u003Cbr \/\u003EIn about 2004, our program embarked on a regional pilot project to teach healthcare workers – doctors, nurses, social workers, chaplains, and others – to provide pediatric palliative care. Our region is the Upper Midwest: Minnesota, Iowa, Wisconsin, North and South Dakota.  “Join pediatric palliative care,” we joked, “and see the world!!”\u003Cbr \/\u003E\u003Cbr \/\u003ELittle did we know. \u003Cbr \/\u003E\u003Cbr \/\u003EFrom these first steps began a truly humbling and inspiring journey across many continents and into many communities. \u003Cbr \/\u003E\u003Cbr \/\u003EMuch of this started when a project I was involved with – \u003Ca href=\"https:\/\/www.bioethics.northwestern.edu\/programs\/epec\/curricula\/pediatrics.html\" target=\"_blank\"\u003EEducation in Palliative and End of Life Care for Pediatrics* (EPECPeds)\u003C\/a\u003E\u0026nbsp;–\u0026nbsp;launched. The larger world was very interested in a flexible, curriculum to scale pediatric palliative care services. Groups from India, South America, the Pacific Rim, and an Isreali-Palestinian initiative among others invited us to teach and most importantly to train others to teach. When I travel I also look up palliative care friends I have met along the byways and see what their work is like. From these travels and workshops, relationships formed. Lively discussions erupted. What does pediatric palliative care look like in other countries? How has it evolved? What are the lessons learned to help, and ones to avoid?  \u003Cbr\u003E\u003Cbr \/\u003E\u003Cblockquote class=\"twitter-tweet\" data-lang=\"en\"\u003E\u003Cp lang=\"en\" dir=\"ltr\"\u003EDr Chong Po Heng teaching about breathlessness at \u003Ca href=\"https:\/\/twitter.com\/hashtag\/EPECped?src=hash\u0026amp;ref_src=twsrc%5Etfw\"\u003E#EPECped\u003C\/a\u003E \u003Ca href=\"https:\/\/t.co\/tSzk9UAQYa\"\u003Epic.twitter.com\/tSzk9UAQYa\u003C\/a\u003E\u003C\/p\u003E\u0026mdash; Stacy Remke (@StacyRemke) \u003Ca href=\"https:\/\/twitter.com\/StacyRemke\/status\/997352275050983425?ref_src=twsrc%5Etfw\"\u003EMay 18, 2018\u003C\/a\u003E\u003C\/blockquote\u003E\u003Cscript async src=\"https:\/\/platform.twitter.com\/widgets.js\" charset=\"utf-8\"\u003E\u003C\/script\u003E\u003Cbr\u003E\u003Cbr \/\u003EAs a social worker, people usually ask me about mental health, psychosocial and bereavement support considerations. These are especially tough questions when one knows little of the cultural context, perceptions of, and approaches to mental health, or the resources available to address the needs. In India, the first question families are asked when a new diagnosis is made is “how much money do you have?” The second question is “what do you want the patient to know?” Collusion between the physician and the extended family about how much (if anything) to tell the patient, is common and expected. It is important to account for and adjust to these differences. But some things are universal. I was recently in Singapore, working with a pediatric palliative care team. On several home visits, I saw devoted families providing exquisite loving care. \u003Cbr \/\u003E\u003Cbr \/\u003EInternational work can leave haunting memories too. In the aftermath of Hurricane Haiyan, in the Philippines, I volunteered near the community health center’s “intensive” care unit for the sickest patients. This small room with dirty green walls and sputtering florescent light held two narrow cots and a gurney, a large rusty O2 tank, and a cabinet. I observed a girl no older than 13 handbagging an elderly man lying on a gurney.  In the other corner, an elderly person was huddled against the edge of a cot, hopefully sleeping. As I peeked into the room, the girl turned to me with an expression of great anxiety and distress. She did not break rhythm in her bagging task. I asked the physician about the scene, who explained that family members often must provide such care as no other resources exist. She expected this elderly cancer patient would die within a few days. I asked about discussing a do not resuscitate order or advanced care planning. She said no, that would happen with the oncologist at the regional cancer center…3 hours away. All I could hope for was that the grandfather wouldn’t die during this young girl’s shift at the bedside. \u003Cbr \/\u003E\u003Cbr \/\u003E\u003Cblockquote class=\"twitter-tweet\" data-lang=\"en\"\u003E\u003Cp lang=\"en\" dir=\"ltr\"\u003E\u003Ca href=\"https:\/\/twitter.com\/hashtag\/EPECpeds?src=hash\u0026amp;ref_src=twsrc%5Etfw\"\u003E#EPECpeds\u003C\/a\u003E getting underway this morning in Kuala Lumpur! Dr Ross Drake demonstrates interactive lecture. \u003Ca href=\"https:\/\/t.co\/LCFYKOEWl5\"\u003Epic.twitter.com\/LCFYKOEWl5\u003C\/a\u003E\u003C\/p\u003E\u0026mdash; Stacy Remke (@StacyRemke) \u003Ca href=\"https:\/\/twitter.com\/StacyRemke\/status\/997304489404022784?ref_src=twsrc%5Etfw\"\u003EMay 18, 2018\u003C\/a\u003E\u003C\/blockquote\u003E\u003Cscript async src=\"https:\/\/platform.twitter.com\/widgets.js\" charset=\"utf-8\"\u003E\u003C\/script\u003E\u003Cbr \/\u003E\u003Cbr \/\u003EThese international adventures in palliative care can be enriching and maddening all at once and are likely to change us in ways we do not expect. For me, I no longer take for granted the tremendous resources and access people have here in developed countries. Routine illnesses here are life-threatening in other places. What then are the boundaries of palliative care? We apparently can’t take suitcases of morphine to places where supplies are restricted. (I asked!) What can we do then to improve a lot of those living with pain? As a start, make some friends. Go and visit them. Witness love, skill and dedication in action. Be humble. See what you can offer. \u003Cbr \/\u003E\u003Cbr \/\u003EBy the way, we never did crack North Dakota in our initial pilot effort, but other doors opened. Join the palliative care community and see the world, indeed! \u003Cbr \/\u003E\u003Cbr \/\u003E*\u003Ca href=\"https:\/\/www.bioethics.northwestern.edu\/programs\/epec\/curricula\/pediatrics.html\" target=\"_blank\"\u003EEPEC-Peds\u003C\/a\u003E is an NCI funded curriculum and training initiative. PI: Stefan Friedrichsdorf, Joanne Wolfe, Co-I: Stacy Remke, Joshua Hauser  \u003Cbr \/\u003E\u003Cbr \/\u003E\u003Ci\u003EStacy S. Remke, LICSW, ACHP-SW was a pediatric palliative care social worker for over 27 years and one of the founders of PPC at Children's Hospitals and Clinics of MN. She currently teaches graduate social work at the University of Minnesota, hoping to inspire the next gen palliative care social work community. She is also on the board of SWHPN. When not occupied with all things palliative Stacy can be found wrangling her 108 lb \"puppy\" Seamus. \u003C\/i\u003E\u003Cmeta name=\"twitter:card\" content=\"summary\" \/\u003E\u003Cmeta name=\"twitter:site\" content=\"@pallimed\" \/\u003E\u003Cmeta name=\"twitter:title\" content=\"International Palliative Care Education - EPEC-Peds\" \/\u003E\u003Cmeta name=\"twitter:description\" content=\"These international adventures in palliative care can be enriching and maddening all at once and are likely to change us in ways we do not expect.\" \/\u003E\u003Cmeta name=\"twitter:image\" content=\"https:\/\/1.bp.blogspot.com\/-bZqFGJjeJUo\/W6T54aQPgqI\/AAAAAAACaZg\/xhIEORuhQlIYXCoK-mQUhvuQJdeC_0qfwCLcBGAs\/s1600\/InternationalPalliative%2BCare%2BEducation.png\" \/\u003E\u003Cmeta name=\"twitter:url\" content=\"https:\/\/www.pallimed.org\/2018\/09\/international-palliative-care-education.html\" \/\u003E"},"link":[{"rel":"edit","type":"application/atom+xml","href":"https:\/\/www.blogger.com\/feeds\/13495125\/posts\/default\/6641574978557639961"},{"rel":"self","type":"application/atom+xml","href":"https:\/\/www.blogger.com\/feeds\/13495125\/posts\/default\/6641574978557639961"},{"rel":"alternate","type":"text/html","href":"https:\/\/www.pallimed.org\/2018\/09\/international-palliative-care-education.html","title":"International Palliative Care Education - EPEC-Peds"}],"author":[{"name":{"$t":"Pallimed Editor"},"uri":{"$t":"http:\/\/www.blogger.com\/profile\/11358791266969988517"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"media$thumbnail":{"xmlns$media":"http://search.yahoo.com/mrss/","url":"https:\/\/1.bp.blogspot.com\/-bZqFGJjeJUo\/W6T54aQPgqI\/AAAAAAACaZg\/xhIEORuhQlIYXCoK-mQUhvuQJdeC_0qfwCLcBGAs\/s72-c\/InternationalPalliative%2BCare%2BEducation.png","height":"72","width":"72"}},{"id":{"$t":"tag:blogger.com,1999:blog-13495125.post-248686639606003059"},"published":{"$t":"2016-09-04T15:20:00.000-05:00"},"updated":{"$t":"2018-08-06T20:11:30.182-05:00"},"category":[{"scheme":"http://www.blogger.com/atom/ns#","term":"book"},{"scheme":"http://www.blogger.com/atom/ns#","term":"burnout"},{"scheme":"http://www.blogger.com/atom/ns#","term":"cancer"},{"scheme":"http://www.blogger.com/atom/ns#","term":"chemotherapy"},{"scheme":"http://www.blogger.com/atom/ns#","term":"comments"},{"scheme":"http://www.blogger.com/atom/ns#","term":"facebook"},{"scheme":"http://www.blogger.com/atom/ns#","term":"icu"},{"scheme":"http://www.blogger.com/atom/ns#","term":"instagram"},{"scheme":"http://www.blogger.com/atom/ns#","term":"media"},{"scheme":"http://www.blogger.com/atom/ns#","term":"neuro"},{"scheme":"http://www.blogger.com/atom/ns#","term":"NICU"},{"scheme":"http://www.blogger.com/atom/ns#","term":"oncology"},{"scheme":"http://www.blogger.com/atom/ns#","term":"pediatrics"},{"scheme":"http://www.blogger.com/atom/ns#","term":"research"},{"scheme":"http://www.blogger.com/atom/ns#","term":"review"},{"scheme":"http://www.blogger.com/atom/ns#","term":"self care"},{"scheme":"http://www.blogger.com/atom/ns#","term":"social media"},{"scheme":"http://www.blogger.com/atom/ns#","term":"The profession"},{"scheme":"http://www.blogger.com/atom/ns#","term":"twitter"}],"title":{"type":"text","$t":"August 2016 Pallimed Recap"},"content":{"type":"html","$t":"\u003Cdiv class=\"separator\" style=\"clear: both; text-align: center;\"\u003E\u003C\/div\u003E\u003Cdiv class=\"separator\" style=\"clear: both; text-align: center;\"\u003E\u003C\/div\u003E\u003Cdiv class=\"separator\" style=\"clear: both; text-align: center;\"\u003E\u003C\/div\u003E\u003Cdiv class=\"separator\" style=\"clear: both; text-align: center;\"\u003E\u003Ca href=\"https:\/\/3.bp.blogspot.com\/-TgFnY4Eq04A\/V8x0yCZ34mI\/AAAAAAABfFA\/kQAWq6f3Ygs1XnWBGmr3GsoIi690Jz05QCLcB\/s1600\/Pallimed%2BReview%2B-%2BSQ.png\" imageanchor=\"1\" style=\"clear: right; float: right; margin-bottom: 1em; margin-left: 1em;\"\u003E\u003Cimg border=\"0\" height=\"320\" src=\"https:\/\/3.bp.blogspot.com\/-TgFnY4Eq04A\/V8x0yCZ34mI\/AAAAAAABfFA\/kQAWq6f3Ygs1XnWBGmr3GsoIi690Jz05QCLcB\/s320\/Pallimed%2BReview%2B-%2BSQ.png\" width=\"320\" \/\u003E\u003C\/a\u003E\u003C\/div\u003Eby Christian Sinclair\u003Cbr \/\u003E\u003Cbr \/\u003EAugust 2016 has left the building along with a lot of heat, rain and wildfires.\u003Cbr \/\u003E\u003Cbr \/\u003EHere 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.\u003Cbr \/\u003E\u003Cbr \/\u003EMake sure to follow, engage, like and comment with us on \u003Ca href=\"https:\/\/www.facebook.com\/Pallimed\" target=\"_blank\"\u003EFacebook\u003C\/a\u003E, \u003Ca href=\"https:\/\/twitter.com\/pallimed\" target=\"_blank\"\u003ETwitter\u003C\/a\u003E, \u003Ca href=\"https:\/\/plus.google.com\/b\/103923265465185998803\/+PallimedOrg\/posts\" target=\"_blank\"\u003EGoogle+\u003C\/a\u003E, \u003Ca href=\"http:\/\/www.pinterest.com\/pallimed\/\" target=\"_blank\"\u003EPinterest\u003C\/a\u003E, \u003Ca href=\"http:\/\/pallimedblog.tumblr.com\/\" target=\"_blank\"\u003ETumblr\u003C\/a\u003E, \u003Ca href=\"https:\/\/www.instagram.com\/pallimedblog\/\" target=\"_blank\"\u003EInstagram\u003C\/a\u003E and \u003Ca href=\"https:\/\/www.linkedin.com\/groups\/Pallimed-Readers-1776961\" target=\"_blank\"\u003ELinkedIN\u003C\/a\u003E. \u0026nbsp;We always appreciate it when you recommend us to your peers and social media makes it very easy!\u003Cbr \/\u003E\u003Cbr \/\u003E\u003Cb\u003ECommunication\u003C\/b\u003E\u003Cbr \/\u003E\u003Cul\u003E\u003Cli\u003E\u003Ca href=\"http:\/\/www.pallimed.org\/2016\/08\/palliative-chemotherapy-oxymoron.html\" target=\"_blank\"\u003EPalliative Chemotherapy: An Oxymoron\u003C\/a\u003E by Rebecca Gagne Henderson\u003C\/li\u003E\u003C\/ul\u003E\u003Cb\u003EHumanities\/Media Reviews\u003C\/b\u003E\u003Cbr \/\u003E\u003Cul\u003E\u003Cli\u003E\u003Ca href=\"http:\/\/www.pallimed.org\/2016\/08\/redefining-death-in-dignity-sherwin.html\" target=\"_blank\"\u003ERedefining \"Death in Dignity\": Sherwin Nuland's 'How We Die'\u003C\/a\u003E by Vivian Lam\u003C\/li\u003E\u003C\/ul\u003E\u003Cb\u003EInterview\/News\u003C\/b\u003E\u003Cbr \/\u003E\u003Cul\u003E\u003Cli\u003E\u003Ca href=\"http:\/\/www.pallimed.org\/2016\/08\/behind-scenes-media-watch-by-barry.html\" target=\"_blank\"\u003EBehind the Scenes: Media Watch\u003C\/a\u003E by Barry Ashpole\u003C\/li\u003E\u003C\/ul\u003E\u003Cb\u003ENarrative\/Opinion\u003C\/b\u003E\u003Cbr \/\u003E\u003Cul\u003E\u003Cli\u003E\u003Ca href=\"http:\/\/www.pallimed.org\/2016\/08\/what-happens-when-its-you.html\" target=\"_blank\"\u003EWhat happens when it is you?\u003C\/a\u003E by Michael Fratkin\u003C\/li\u003E\u003C\/ul\u003E\u003Cb\u003EResearch\/Education\u003C\/b\u003E\u003Cbr \/\u003E\u003Cul\u003E\u003Cli\u003E\u003Ca href=\"http:\/\/www.pallimed.org\/2016\/08\/august-2016-palliative-care-review.html\" target=\"_blank\"\u003EAugust 2016 Journal Review\u003C\/a\u003E by Christian Sinclair\u003C\/li\u003E\u003Cli\u003E\u003Ca href=\"http:\/\/www.pallimed.org\/2016\/08\/trisomy-13-and-18-when-lethal-condition.html\" target=\"_blank\"\u003ETrisomy 13 and 18: When a lethal condition is no longer lethal\u003C\/a\u003E by Jenni Linebarger\u003C\/li\u003E\u003Cli\u003E\u003Ca href=\"http:\/\/www.pallimed.org\/2016\/08\/worse-than-deathdependence.html\" target=\"_blank\"\u003EWorse than Death? ...Dependence \u003C\/a\u003Eby Ross Albert\u003C\/li\u003E\u003Cli\u003E\u003Ca href=\"http:\/\/www.pallimed.org\/2016\/08\/four-score-coma-scales-prognosis-in-icu.html\" target=\"_blank\"\u003EFOUR Score: Coma scales and prognosis in the ICU\u003C\/a\u003E by Drew Rosielle\u003C\/li\u003E\u003C\/ul\u003E\u003Cdiv\u003E\u003Cb\u003EThe Profession\u003C\/b\u003E\u003C\/div\u003E\u003Cdiv\u003E\u003Cul\u003E\u003Cli\u003E\u003Ca href=\"http:\/\/www.pallimed.org\/2016\/08\/photovoice-roundup-self-care.html\" target=\"_blank\"\u003EPhotovoice Roundup: Self Care\u003C\/a\u003E by Lizzy Miles\u003C\/li\u003E\u003Cli\u003E\u003Ca href=\"http:\/\/www.pallimed.org\/2016\/08\/building-resilience-in-clinicians-to.html\" target=\"_blank\"\u003EBuilding Resilience in Clinicians to Prevent Burnout\u003C\/a\u003E by Arif Kamal\u003C\/li\u003E\u003C\/ul\u003E\u003C\/div\u003E\u003Cb\u003EComment Shout-out's for July (in no particular order):\u003C\/b\u003E\u003Cbr \/\u003EClay 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.\u003Cbr \/\u003E\u003Cbr \/\u003E\u003Cb\u003EHighlighted Comment for August 2016\u003C\/b\u003E\u003Cbr \/\u003EFrustrations with words not living up to their promise continue to be a theme this month. Thomas LeBlanc had a great comment on the \u003Ca href=\"http:\/\/www.pallimed.org\/2016\/08\/palliative-chemotherapy-oxymoron.html\" target=\"_blank\"\u003Echallenges with the term palliative chemotherapy\u003C\/a\u003E.\u003Cbr \/\u003E\u003Cblockquote class=\"tr_bq\"\u003ELet’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. \u003C\/blockquote\u003E\u003Cul\u003E\u003C\/ul\u003E\u003Cbr \/\u003E\u003Cb\u003ESocial Media Highlights\u003C\/b\u003E\u003Cbr \/\u003E\u003Cbr \/\u003E\u003Cul\u003E\u003Cli\u003EMost popular Pallimed Facebook post: \u003Ca href=\"https:\/\/www.facebook.com\/Pallimed\/posts\/10154631299812313\" target=\"_blank\"\u003ECondoloneces to Amedisys hospice on the death of Bill Borne\u003C\/a\u003E\u0026nbsp;- Reached 15k+ people\u003C\/li\u003E\u003Cli\u003EMost popular Pallimed Twitter post: \u003Ca href=\"https:\/\/twitter.com\/Pallimed\/status\/764856105335975936\" target=\"_blank\"\u003EWe need to be frank about death with terminal patients via @newsweek\u003C\/a\u003E\u0026nbsp;- 91 Engagements\u003C\/li\u003E\u003Cli\u003EMost popular Pallimed Instagram Post: \u003Ca href=\"https:\/\/www.instagram.com\/p\/BJvuriFAHNy\/\" target=\"_blank\"\u003E\"That's all I wanted: for someone to look at me and listen to me, but in some beautiful and artisitc way.\" - Gene Wilder\u003C\/a\u003E\u0026nbsp;- 453 impressions\u003C\/li\u003E\u003C\/ul\u003E\u003Cbr \/\u003E\u003Cblockquote class=\"instagram-media\" data-instgrm-captioned=\"\" data-instgrm-version=\"7\" style=\"background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 658px; padding: 0; width: 99.375%;\"\u003E\u003Cdiv style=\"padding: 8px;\"\u003E\u003Cdiv style=\"background: #F8F8F8; line-height: 0; margin-top: 40px; padding: 50.0% 0; text-align: center; width: 100%;\"\u003E\u003Cdiv style=\"background: url(data:image\/png; display: block; height: 44px; margin: 0 auto -44px; position: relative; top: -22px; width: 44px;\"\u003E\u003C\/div\u003E\u003C\/div\u003E\u003Cdiv style=\"margin: 8px 0 0 0; padding: 0 4px;\"\u003E\u003Ca href=\"https:\/\/www.instagram.com\/p\/BJvuriFAHNy\/\" style=\"color: black; font-family: \u0026quot;arial\u0026quot; , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;\" target=\"_blank\"\u003E\"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\u003C\/a\u003E\u003C\/div\u003E\u003Cdiv style=\"color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; line-height: 17px; margin-bottom: 0; margin-top: 8px; overflow: hidden; padding: 8px 0 7px; text-align: center; text-overflow: ellipsis; white-space: nowrap;\"\u003EA photo posted by Pallimed (@pallimedblog) on \u003Ctime datetime=\"2016-08-30T20:11:00+00:00\" style=\"font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;\"\u003EAug 30, 2016 at 1:11pm PDT\u003C\/time\u003E\u003C\/div\u003E\u003C\/div\u003E\u003C\/blockquote\u003E\u003Cscript async=\"\" defer=\"\" src=\"\/\/platform.instagram.com\/en_US\/embeds.js\"\u003E\u003C\/script\u003E \u003Cb\u003E\u003Cbr \/\u003E\u003C\/b\u003E\u003Cb\u003EPassionate Volunteers and Writers Wanted\u003C\/b\u003E\u003Cbr \/\u003EDo 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.\u003Cbr \/\u003E\u003Cbr \/\u003EIf you are interested in writing for or working with us at Pallimed please check out the \u003Ca href=\"http:\/\/www.pallimed.org\/2014\/09\/pallimed-opportunities.html\" target=\"_blank\"\u003EPallimed Opportunities page and complete the form at the bottom\u003C\/a\u003E. If you want to help we have something you could do! \u003Cb\u003ELike write this simple monthly review post (this would be really easy to hand off)!\u003C\/b\u003E 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!\u003Cbr \/\u003E\u003Cbr \/\u003E\u003Ci\u003EChristian 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. \u003C\/i\u003E\u003Cbr \/\u003E\u003Ca href=\"https:\/\/4.bp.blogspot.com\/-UNDrsLjX2yQ\/V8x7FIfG8_I\/AAAAAAABfFQ\/Ht_DhJv7aJ0SHGfBRGeGU4MrdTVhcUywQCLcB\/s1600\/Pallimed%2BReview%2B-%2BTW.png\" imageanchor=\"1\"\u003E\u003Cimg border=\"0\" height=\"1\" src=\"https:\/\/4.bp.blogspot.com\/-UNDrsLjX2yQ\/V8x7FIfG8_I\/AAAAAAABfFQ\/Ht_DhJv7aJ0SHGfBRGeGU4MrdTVhcUywQCLcB\/s320\/Pallimed%2BReview%2B-%2BTW.png\" width=\"1\" \/\u003E\u003C\/a\u003E\u003Ci\u003E\u003Cbr \/\u003E\u003C\/i\u003E\u003Ci\u003EImage Credit: Lionello DelPiccolo via Unsplash CC0 1.0\u003C\/i\u003E\u003Cmeta name=\"twitter:card\" content=\"summary\" \/\u003E\u003Cmeta name=\"twitter:site\" content=\"@pallimed\" \/\u003E\u003Cmeta name=\"twitter:title\" content=\"August 2016 Pallimed Recap\" \/\u003E\u003Cmeta name=\"twitter:description\" content=\"Maybe you missed one of our posts? Forgot about a good read? We recap the month of August for you!\" \/\u003E\u003Cmeta name=\"twitter:image\" content=\"https:\/\/4.bp.blogspot.com\/-UNDrsLjX2yQ\/V8x7FIfG8_I\/AAAAAAABfFQ\/Ht_DhJv7aJ0SHGfBRGeGU4MrdTVhcUywQCLcB\/s1600\/Pallimed%2BReview%2B-%2BTW.png\" \/\u003E\u003Cmeta name=\"twitter:url\" content=\"http:\/\/www.pallimed.org\/2016\/09\/august-2016-pallimed-recap.html\" \/\u003E    "},"link":[{"rel":"edit","type":"application/atom+xml","href":"https:\/\/www.blogger.com\/feeds\/13495125\/posts\/default\/248686639606003059"},{"rel":"self","type":"application/atom+xml","href":"https:\/\/www.blogger.com\/feeds\/13495125\/posts\/default\/248686639606003059"},{"rel":"alternate","type":"text/html","href":"https:\/\/www.pallimed.org\/2016\/09\/august-2016-pallimed-recap.html","title":"August 2016 Pallimed Recap"}],"author":[{"name":{"$t":"Christian Sinclair"},"uri":{"$t":"http:\/\/www.blogger.com\/profile\/14685043408496367587"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"media$thumbnail":{"xmlns$media":"http://search.yahoo.com/mrss/","url":"https:\/\/3.bp.blogspot.com\/-TgFnY4Eq04A\/V8x0yCZ34mI\/AAAAAAABfFA\/kQAWq6f3Ygs1XnWBGmr3GsoIi690Jz05QCLcB\/s72-c\/Pallimed%2BReview%2B-%2BSQ.png","height":"72","width":"72"}},{"id":{"$t":"tag:blogger.com,1999:blog-13495125.post-6173847949147735362"},"published":{"$t":"2016-08-15T14:57:00.001-05:00"},"updated":{"$t":"2016-08-15T14:57:47.623-05:00"},"category":[{"scheme":"http://www.blogger.com/atom/ns#","term":"ethics"},{"scheme":"http://www.blogger.com/atom/ns#","term":"hospital"},{"scheme":"http://www.blogger.com/atom/ns#","term":"linebarger"},{"scheme":"http://www.blogger.com/atom/ns#","term":"NICU"},{"scheme":"http://www.blogger.com/atom/ns#","term":"pediatrics"},{"scheme":"http://www.blogger.com/atom/ns#","term":"surgery"}],"title":{"type":"text","$t":" Trisomy 13 and 18: When a lethal condition is no longer lethal"},"content":{"type":"html","$t":"\u003Cdiv class=\"separator\" style=\"clear: both; text-align: center;\"\u003E\u003Ca href=\"https:\/\/1.bp.blogspot.com\/-rXMB-wNJlXg\/V7IdLMXmI-I\/AAAAAAABdmo\/6Dh9M9NnLaYn1VrKD2Ehky62d8btdiYbgCLcB\/s1600\/Trisomy13.jpg\" imageanchor=\"1\" style=\"clear: right; float: right; margin-bottom: 1em; margin-left: 1em;\"\u003E\u003Cimg border=\"0\" height=\"292\" src=\"https:\/\/1.bp.blogspot.com\/-rXMB-wNJlXg\/V7IdLMXmI-I\/AAAAAAABdmo\/6Dh9M9NnLaYn1VrKD2Ehky62d8btdiYbgCLcB\/s320\/Trisomy13.jpg\" width=\"320\" \/\u003E\u003C\/a\u003E\u003C\/div\u003Eby Jenni Linebarger\u003Cbr \/\u003E\u003Cbr \/\u003EWhat is a “lethal condition” really?  How does the definition change as medical advances are made?  Several times a year, I meet parents who’ve had providers tell them that their baby has a “lethal diagnosis” (or worse, that the diagnosis is “incompatible with life”) when testing detects trisomy 13 or trisomy 18.  Such dire prognostication sets the stage for all future interactions with the health care community.  For some, it becomes a rallying cry to prove providers wrong, for others it becomes a sealed fate.  For all, it declares a level of certainty that we just do not have. \u003Cbr \/\u003E\u003Cbr \/\u003EThis summer,\u0026nbsp;\u003Ca href=\"http:\/\/jama.jamanetwork.com\/article.aspx?articleid=2536636\" target=\"_blank\"\u003Ea paper published in JAMA by Katherine E. Nelson and colleague\u003C\/a\u003Es sought to provide “more data about survival in general and after interventions” for families who have children diagnosed with trisomy 13 or trisomy 18.  They conducted a retrospective, population-based cohort used linked health administrative databases for all children born in Ontario between 1 April 1991 and 31 March 2012 with a diagnostic code for trisomy 13 or trisomy 18.  The data from this cohort confirms that survival is not as uncommon as once thought.  \u003Cbr \/\u003E\u003Cbr \/\u003EThey found:\u003Cbr \/\u003E\u003Cul\u003E\u003Cli\u003EMedian survival of 12.5 days for children with trisomy 13 , and 9 days for children with trisomy 18\u003C\/li\u003E\u003Cli\u003EThe rate of deaths slowed around 3 months of age in children with trisomy 13, and 6 months of age in children with trisomy 18\u003C\/li\u003E\u003Cli\u003E1-year survival was 19.8 percent for children with trisomy 13, and 12.6 percent for children with trisomy 18\u003C\/li\u003E\u003Cli\u003E10-year survival was 12.9 percent for children with trisomy 13, and 9.8 percent for children with trisomy 18\u003C\/li\u003E\u003Cli\u003E~50% of all the children had an organ system with a congenital anomaly (most often cardiac)\u003C\/li\u003E\u003C\/ul\u003EThe researchers also looked at the surgical interventions patients with trisomy 13 or trisomy 18 underwent during their lives.  ENT procedures were most common in children with trisomy 13 and procedures to implant medical devices were the most frequent for those with trisomy 18.  Median survival after the first surgery was greater than 1 year for all except the children with trisomy 13 who had ophthalmic surgery and children with trisomy 18 who had cardiac surgery.  The authors suggest such high survival following surgery “reflects both careful patient selection and procedural benefit.”\u003Cbr \/\u003E\u003Cbr \/\u003EWhile the researchers hope that the survival data presented can help “guide decision making” there are many factors that influence decision making that this study was not designed to delve into.  First, the data did not include all prenatal diagnosis, only those surviving to birth.  Second, as the authors point out, survival and quality of life are not one in the same.  (Although commentator Dr. John Lantos noted, “The concept of quality of life is too vague and subjective to be helpful as a criterion for deciding about the appropriateness of treatment.”)  Additionally, the data does not touch upon the decision-making itself – for instance, they did not report the percentage of deaths following decisions to withhold or withdrawal life-sustaining treatments.  \u003Cbr \/\u003E\u003Cbr \/\u003ESo what do I take away from this study on the survival of children with either trisomy 13 or trisomy 18?\u003Cbr \/\u003E\u003Col\u003E\u003Cli\u003EIt is time to change the language around the diagnosis of trisomy 13 and trisomy 18.  These diagnoses are not universally “lethal” (since greater than 10% survive greater than 10 years) and all surgical interventions are not futile.\u003C\/li\u003E\u003Cli\u003EDiscussing prognosis and survival is still tough and filled with uncertainty.  Which babies with trisomy 13 or trisomy 18 will die after a few days and which will live a decade?  We still lack useful predictors of long-term survival when facing an individual family in a prenatal meeting.\u003C\/li\u003E\u003C\/ol\u003EI also reached out to lead author, and colleague, Dr. Kate Nelson.  She agreed with the core take home message, and stated “While the majority of children die within the first few weeks of life, the children who survive can live a decade or more. Since there are few markers associated with long-term survival besides mosaicism, prognostication is difficult.  Therefore, care must be individualized, balancing the risks and benefits based on specific clinical situations and families' goals and preferences.”  She also noted that readers may link surgical intervention to longer survival, and shared the following: “Children who received surgeries had to live long enough and be healthy enough to undergo procedures, so patient selection likely played a major role in the high post-operative survival rate.  More work is needed to understand how surgeries impact survival among children with trisomy 13 and 18.”  \u003Ca href=\"http:\/\/www.sickkids.ca\/aboutsickkids\/newsroom\/past-news\/2016\/study-sheds-light-survival-children-trisomy-13-18.html\" target=\"_blank\"\u003EYou can link to the press release from her institution here.\u003C\/a\u003E\u003Cbr \/\u003E\u003Cbr \/\u003EReferences:\u003Cbr \/\u003ENelson KE, Rosella, LC, Mahant S, Guttmann A. \u003Ca href=\"http:\/\/jama.jamanetwork.com\/article.aspx?articleid=2536636\" target=\"_blank\"\u003ESurvival and Surgical Interventions for Children with Trisomy 13 and 18\u003C\/a\u003E. JAMA 2016; 316(4):420-429.\u003Cbr \/\u003E\u003Cbr \/\u003E\u003Ci\u003EJenni Linebarger, MD, MPH, FAAP is a pediatric palliative care physician at Children's Mercy Hospital in Kansas City, MO.  \u003C\/i\u003E\u003Cbr \/\u003E\u003Ci\u003E\u003Cbr \/\u003E\u003C\/i\u003E\u003Ci\u003EPhoto Credit: Trisomy 13 via Wikimedia Commons\u003C\/i\u003E"},"link":[{"rel":"edit","type":"application/atom+xml","href":"https:\/\/www.blogger.com\/feeds\/13495125\/posts\/default\/6173847949147735362"},{"rel":"self","type":"application/atom+xml","href":"https:\/\/www.blogger.com\/feeds\/13495125\/posts\/default\/6173847949147735362"},{"rel":"alternate","type":"text/html","href":"https:\/\/www.pallimed.org\/2016\/08\/trisomy-13-and-18-when-lethal-condition.html","title":" Trisomy 13 and 18: When a lethal condition is no longer lethal"}],"author":[{"name":{"$t":"Jenni Linebarger"},"uri":{"$t":"http:\/\/www.blogger.com\/profile\/18205512632081121244"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"24","height":"32","src":"http:\/\/1.bp.blogspot.com\/-F1MmXGaqLGQ\/UmfGzKWDnfI\/AAAAAAAAAAU\/vSPhMIHqEt4\/s220\/IMG_6602.jpg"}}],"media$thumbnail":{"xmlns$media":"http://search.yahoo.com/mrss/","url":"https:\/\/1.bp.blogspot.com\/-rXMB-wNJlXg\/V7IdLMXmI-I\/AAAAAAABdmo\/6Dh9M9NnLaYn1VrKD2Ehky62d8btdiYbgCLcB\/s72-c\/Trisomy13.jpg","height":"72","width":"72"}},{"id":{"$t":"tag:blogger.com,1999:blog-13495125.post-2959336602949863431"},"published":{"$t":"2016-06-29T14:40:00.000-05:00"},"updated":{"$t":"2016-06-29T14:40:05.384-05:00"},"category":[{"scheme":"http://www.blogger.com/atom/ns#","term":"cancer"},{"scheme":"http://www.blogger.com/atom/ns#","term":"pediatrics"},{"scheme":"http://www.blogger.com/atom/ns#","term":"tweetchat"},{"scheme":"http://www.blogger.com/atom/ns#","term":"twitter"},{"scheme":"http://www.blogger.com/atom/ns#","term":"young adult"}],"title":{"type":"text","$t":"The Clare Project and \"What Matters Most?\" to young people with advanced cancer"},"content":{"type":"html","$t":"\u003Cdiv class=\"separator\" style=\"clear: both; text-align: center;\"\u003E\u003Ca href=\"https:\/\/3.bp.blogspot.com\/-gWJIqH68Y0U\/V3Qi4DuBGmI\/AAAAAAABWis\/R8kB2axDhq8dBPDnQ7Vj1WjGCq4P9WRZACLcB\/s1600\/the-clare-project-logo-large-dark.jpg\" imageanchor=\"1\" style=\"clear: right; float: right; margin-bottom: 1em; margin-left: 1em;\"\u003E\u003Cimg border=\"0\" height=\"240\" src=\"https:\/\/3.bp.blogspot.com\/-gWJIqH68Y0U\/V3Qi4DuBGmI\/AAAAAAABWis\/R8kB2axDhq8dBPDnQ7Vj1WjGCq4P9WRZACLcB\/s320\/the-clare-project-logo-large-dark.jpg\" width=\"320\" \/\u003E\u003C\/a\u003E\u003C\/div\u003Eby Karen J. Wernli \u003Cbr \/\u003E\u003Cbr \/\u003EIn the summer of 2014, my sister-in-law, a new mother, died of cancer after 11 years with her disease. Although doctors gave her the best care they could, as a health researcher focused in cancer care, I wanted to do better for people like Clare. Then, at a scientific conference that fall, I learned that others had the same desire. Representatives from the National Cancer Institute were asking for studies to improve care for adolescents and young adults, including at the end of life. On the plane home, I started working with my research ideas. I realized that to know what young people with advanced-stage cancer need, want, and value, we need to ask them directly. That’s what the \u003Ca href=\"https:\/\/www.grouphealthresearch.org\/get-involved\/be-part-study\/clare-project\/\" target=\"_blank\"\u003EClare Project\u003C\/a\u003E is doing. \u003Cbr \/\u003E\u003Cbr \/\u003EI was fortunate to get support from the Group Health Research Institute Development Fund for pilot work. My team and I started by interviewing a few young adults with end-stage cancer. I learned so much from them about their concerns and values. Now, my Clare Project team of Drs. Marlaine Gray and Evette Ludman and Tara Beatty and I are taking a new approach for the next phases of our work. \u003Cbr \/\u003E\u003Cbr \/\u003E\u003Cb\u003EA personal approach for a personal project \u003C\/b\u003E\u003Cbr \/\u003E\u003Cbr \/\u003EClinical studies usually recruit people through the health system, with waiting-room posters or physician referrals. Because our work asks intimate questions about end-of-life priorities, we wanted something more personal. Clare used social networking to keep in touch with friends and family, so we started a Facebook page and a blog to tell our story. These have been wonderful for connecting with people who support our research. But we’ve found an even better way to engage with patients. \u003Cbr \/\u003E\u003Cbr \/\u003EBased on many helpful suggestions, we started looking into online communities for young people with cancer. Through social media like Twitter, patients and caregivers are meeting virtually for empathy, encouragement, and practical advice. These communities make patients feel less alone. They are places to learn and share about real issues such as how to handle treatment side effects. The people in these groups aren’t tech geniuses or first adopters. Many joined Twitter only when their health status spurred them to find others with the same illness. Connecting with people through these forums takes time and in the end, is highly efficient. \u003Cbr \/\u003E\u003Cbr \/\u003EMarlaine, especially, has spent hours reading blogs, listening to podcasts, and following Facebook and Twitter feeds to learn the culture of online communities for young adults with cancer. This activity alone has been invaluable for our research by showing us the diversity of experiences, issues, and challenges that people are talking about. We’re still learning about blogging, posting, and tweeting, and we’re grateful to everyone who has allowed us into their conversations. By trying to be respectful members of these communities, we’ve been able to reach out directly, one-on-one, to potential study participants, to ask if we might talk with them. Everyone we’ve asked has said yes.\u003Cbr \/\u003E\u003Cbr \/\u003E\u003Cb\u003EThe future of patient-centered research \u003C\/b\u003E\u003Cbr \/\u003E\u003Cbr \/\u003EOur work is going in many new directions. We just received National Cancer Institute funding to understand nationwide trends in end-of-life care for adolescents and young adults. In the next phase of the Clare Project, we’re going to ask caregivers and health care professionals what questions people have about care and treatment and how our research can answer them.Please contact me and see \u003Ca href=\"https:\/\/twitter.com\/clareproject\" target=\"_blank\"\u003E@clareproject\u003C\/a\u003E\u0026nbsp;if you want to know more. My family is proud that Clare, who was a high school biology teacher, has a legacy in research. \u003Cbr \/\u003E\u003Cbr \/\u003EI’m committed to having patients, caregivers, and health care providers help me formulate, conduct, and spread the word about my research. I’m convinced about using social media to do this. As an epidemiologist, I’ve changed the way I think about a study population. It can still be people connected geographically or by a health care system. But it can also be virtual: people meeting online to discuss their disease, how it is treated, and what they think about their treatment.  \u003Cbr \/\u003E\u003Cbr \/\u003EI’ve experienced how patients are willing to directly and honestly communicate their ideas to researchers using social media and how they are rewarded by participating. I think we should all realize that in the 21st century, this is the best way to connect with people affected by our work. Patients, caregivers, and providers are online, talking about the issues we’re studying. Shouldn’t we be listening?  \u003Cbr \/\u003E\u003Cbr \/\u003EJoin us Wednesday, 9 eastern\/6 central for #hpm chat to discuss palliative needs withing the Metastatic and Advanced Young Adult Cancer Community (#mayacc), We'll discuss effects on patients and caregivers, and how The Clare Project hopes to bring better understanding to the needs of those patients and caregivers.  \u003Cbr \/\u003E\u003Ci\u003E\u003Cbr \/\u003E\u003C\/i\u003E\u003Ci\u003EKaren J. Wernli, PhD, is a Group Health Research Institute assistant investigator working with The Clare Project. \u003C\/i\u003E\u003Cbr \/\u003E\u003Cbr \/\u003EOriginally posted at the \u003Ca href=\"https:\/\/www.grouphealthresearch.org\/news-and-events\/blog\/2016\/may\/young-adults-cancer-clare-project-asks-what-matters\" target=\"_blank\"\u003EResearch Health Group Blog\u003C\/a\u003E"},"link":[{"rel":"edit","type":"application/atom+xml","href":"https:\/\/www.blogger.com\/feeds\/13495125\/posts\/default\/2959336602949863431"},{"rel":"self","type":"application/atom+xml","href":"https:\/\/www.blogger.com\/feeds\/13495125\/posts\/default\/2959336602949863431"},{"rel":"alternate","type":"text/html","href":"https:\/\/www.pallimed.org\/2016\/06\/the-clare-project-and-what-matters-most.html","title":"The Clare Project and \"What Matters Most?\" to young people with advanced cancer"}],"author":[{"name":{"$t":"Christian Sinclair"},"uri":{"$t":"http:\/\/www.blogger.com\/profile\/14685043408496367587"},"email":{"$t":"noreply@blogger.com"},"gd$image":{"rel":"http://schemas.google.com/g/2005#thumbnail","width":"16","height":"16","src":"https:\/\/img1.blogblog.com\/img\/b16-rounded.gif"}}],"media$thumbnail":{"xmlns$media":"http://search.yahoo.com/mrss/","url":"https:\/\/3.bp.blogspot.com\/-gWJIqH68Y0U\/V3Qi4DuBGmI\/AAAAAAABWis\/R8kB2axDhq8dBPDnQ7Vj1WjGCq4P9WRZACLcB\/s72-c\/the-clare-project-logo-large-dark.jpg","height":"72","width":"72"}}]}});