Your personal timeline, a place to aggregate photos, blog posts, tweets and key events in your life.
Created by lesmorgan on May 9, 2008
Last updated: 09/22/10 at 06:37 PM
Les M. has no followers yet. Be the first one to follow.
Susan W. Reynolds' new book, Room for Change, has a unique and practical approach that can help you start your engine again after experiencing grief or loss. Making small changes to the physical environment in your home can give you a new perspective on your life. Recovering from grief is about reconnecting with life, and this book can help you do it. (Detailed review begins after the jump.)
Before reviewing the book in detail, I will disclose that I'm a certified Susan Reynolds fanboy. She syndicates some of her writing through her Growth House blog. Susan told me she was working on this book about a year ago, and I've enjoyed watching her pull it together. The final product is polished and innovative.What I like about Susan's system is that it falls into the "When I got busy I got better" school of applied psychology. She jumps right in with easy, realistic things to do after a loss. In effect, this book starts where other bereavement books leave off. In a refreshing change from the generic grief book format, Susan doesn't spend time on theoretical material about stages of grief, classifications of coping styles, and other professional mantras that are covered extensively elsewhere. This isn't a book about theory, it's a book about about tactics. It's Ninja grief therapy.Susan is a member of the Association of Design Education and a Physical Therapist. Her training in wellness and ergonomics gave her an "out of the box" perspective on how to help people in grief. Her system is based on the fact that making small changes in your surroundings can result in big changes in attitude. The book grew out of her own recovery process after her husband died of cancer, following a difficult two-year battle. She participated in traditional grief groups and found that a practical approach worked best for her. She uses her blog, "Room for Change", to present her ideas about the role of ergonomics in grief recovery. The book version of her system reflects input from bereavement coordinators and other specialists in the field of death and dying. Her company, Revival Redesign (www.revivalredesign.com) helps people refresh and enliven their personal space using items they already own and love. She is a consultant to hospices on how interior design can help clients feel comfortable and safe. She speaks at bereavement groups to teach her methods to people who have suffered loss.The basic problem that Susan tackles is that many people feel dead themselves after someone they loved has died. Loss of joy for living, low energy, confusion about goals, and a sense of being overwhelmed are all very common feelings during grief. But it's important to remember that grief is not a mental illness. It's a normal and healthy emotional response to loss. Seeking professional support can be helpful for that relatively small proportion of grieving people who are experiencing depression or complicated grief. But most people, fortunately, have less severe grief reactions that are a universal human experience. "Normal grief" is part of being alive and rarely needs professional care. Even when it is needed, grief therapy is most effective if it is combined with gentle encouragement to pick up the pieces and reassemble them in a new way. Building your new life is the key to getting on your feet again.
Susan's unique approach is to help you look at your physical surroundings with fresh eyes, finding ways to make small changes that will wake you up again. Do you cry every time you look at those pictures covering the wall? Less is more, so maybe you could put some of them in storage and feature one or two that bring back happy memories. Alone at home and feeling miserable? Maybe you could get off your duff and visit the library or community group to be in a supportive public space that provides you with movement of people yet not forced interaction. As your energy returns, you could pack an overnight bag and keep it ready to grab for an outing. Susan's advice is always framed in terms of things you could do, not what you should do. She brainstorms fresh options with you like a caring friend. It's basically girl talk with a reality-based kicker.Do these proactive, change-oriented examples seem insensitive? Would it be better to just give a big hug and encourage deeper expressions of sadness and misery? Not for me, thanks, not my style. I'm a guy, and we aren't wired that way. In fact, many people with resiliant personalities find bereavement groups to be a downer. Of course we all need emotional support (even guys). But most people respond best to support that reminds them of their own self-worth and innate survival skills. (See: Does a former Marine drill sergeant make a terrible therapist? You be the judge.) Susan's book is on the mark in giving commonsense suggestions that most people can immediately grasp and try out. Try something simple, get immediate payoffs.
Living your own life fully is the most important way to honor those who have died. If you are feeling stuck in the mud following a loss, perhaps Room for Change can help get moving foward again.
http://growthhouse.typepad.com/les_morgan/2010/06/room-for-change-by-susan-w-reynolds.html
lesmorgan: Via GN: New Colorado Laws Focus on Improving End-of-Life Care: The Denver Post highlighted several new laws signe... http://bit.ly/b9lWC4
http://twitter.com/lesmorgan/statuses/15814160870
lesmorgan: Via GN: Mixed bag for heart failure patients: less time in hospital but bigger risks at home: First the good news:... http://bit.ly/b0BPJg
http://twitter.com/lesmorgan/statuses/15335928020
A new national study of hospice patients with implatable cardiac defibrillators (ICD) shows that while almost all hospices admit patients with these devices, only 20 percent of hospices had a question on their intake forms to identify patients with ICDs, and just 10 percent reported having a policy in place to discuss deactivation with patients and their families. On average, nearly 60 percent of patients did not have the shocking function of the ICD deactivated, resulting in pain and suffering for some patients. (See: Brief Communication: Management of Implantable Cardioverter-Defibrillators in Hospice: A Nationwide Survey. Nathan Goldstein, MD; Melissa Carlson, MBA, PhD; Elayne Livote, MPH, MS, MA; and Jean S. Kutner, MD, MSPH. Annals of Internal Medicine, March 2, 2010) The abstract is online at http://annals.org/content/152/5/296.abstract.
"Hospices are the foremost experts at dealing with the complex communication issues surrounding end-of-life discussions with patients and their families," said Nathan Goldstein, MD, assistant professor, Hertzberg Palliative Care Institute, Brookdale Department of Geriatrics and Palliative Medicine, Mount Sinai School of Medicine (www.mountsinai.org). "The fact that so few organizations have a policy about deactivation shows how complicated these conversations are."
The idea of turning off a cardiac implant or any other life-sustaining treatment is not easy for people to talk about. Many patients have had these devices for years and see them as a sign of stability. But the consequences of ignoring the issue aren't pleasant. An ICD is a device programmed to detect cardiac arrhythmias and shock the heart back into normal rhythm. ICDs are effective in preventing sudden cardiac death in patients with recurrent arrhythmias, but for patients in hospice care ICD shocks may cause physical and psychological distress for both patients and their caregivers. Patients report that receiving shocks from an ICD is comparable to being kicked or punched in the chest. Receiving ICD shocks has been associated with the development of adjustment disorders, depression, post-traumatic stress disorder, and panic disorder. Family caregivers who observe patients being shocked report feelings of fear, worry, and helplessness, and have been shown to have increased rates of depression and anxiety. For patients with terminal diseases an ICD may no longer prolong a life of acceptable quality, so at some point use of an ICD may become inconsistent with currents goals of care.
"These data indicate that developing a policy to address concerns surrounding ICDs can be highly beneficial in reducing emotional and physical discomfort for hospice patients and their families," said Dr. Goldstein, whose team developed a model policy for ICDs in hospices based on feedback they received from several facilities. The policy includes the necessity for staff to be educated on how ICDs work, identification of patients with ICDs at the time of evaluation and admission, an informed consent discussion with the patient and family about the benefits and burdens of the device, and how to handle the device in an emergency situation.
Related reading:
Amazon.com Widgets
http://growthhouse.typepad.com/les_morgan/2010/03/hospices-not-deactivating-defibrillators-in-patients.html
What are the best practices for palliative care? Turns out that the answer depends on whom you ask. An important new comparative study looked at palliative care guidelines and official practice statements for end-of-life care provided by over 34 health organizations. The groups chosen for study included seven international organizations and 27 organizations operating at the national level in Australia, Canada, the United Kingdom, and the United States. Researchers analyzed a total of 56 documents and came up with a model summary of the most prominent and consistent recommendations. The study titled "What 'best practice' could be in Palliative Care: an analysis of statements on practice and ethics expressed by the main Health Organizations" by Gaia Barazzetti, Claudia Borreani, Guido Miccinesi, and Franco Toscani appeared in BMC Palliative Care 2010, 9:1. The full text is available online (http://www.biomedcentral.com/1472-684X/9/1).The researchers compared the documents using a framework of components for end-of-life care derived from literature, using four main "areas" and 12 "sub-areas". The study is worth reading just to see the meta-framework of topics that were used for the evaluation. The researchers found that topics related to symptom control as well as those related to relational and social issues are more widely covered by the documents than topics related to "preparation" and to "existential condition".The overall conclusion of the study is that "An integrated model of the best palliative care practice is generally lacking in the documents. It might be argued that the lack of a fixed and coherent model is due to the relevance of unavoidable context issues in palliative care, such as specific cultural settings, patient-centred variables, and family specificity. The implication is that palliative care staff have continuously to adapt their model of caring to the specific needs and values of each patient, more than applying a fixed, although maybe comprehensive, care model."One area where there was generally high agreement was on topic E3 - "Participation in the decision-making process". All documents maintain that patients should be involved in every decision concerning treatments. Up to 12 documents by international and national organizations clearly state that patients have a right to make informed decisions on treatments, including the right to refuse treatments. Five of the documents provide indications on documentation such as advance directives, formal living wills, and the designation of proxy decision-makers, all of which are means to determine and honor the patient's choices.That said, when the rubber hits the road for withdrawing life-sustaining treatments the physician is clearly seen as having the critical decision. The authors say that "(w)hile there is a general agreement between the documents that patients should take part in end-of-life choices, withdrawing and withholding of life-sustaining treatments are viewed as the result of an evaluation that is mainly up to the doctor. Indeed, the consistency of end-of-life choices with the patient's wishes is given only a minor relevance." The medical-centic approach also reveals itself in other ways. The statements do not give much emphasis to the topics of "being in control of oneself" and minimizing burden on the family. Definition of quality of life at the end of life is lacking, despite the fact that it should be key outcome measure.We have come a long way in the past 15 years, when palliative medicine was in its infancy as a major specialty. This study shows that practice guidelines are improving, but still have a way to go.
http://growthhouse.typepad.com/les_morgan/2010/02/new-study-compares-best-practice-guidelines-for-endoflife-care-from-34-health-organizations.html
The Growth House blogging portal is looking to add more guest bloggers to ensure that all of the disciplines in hospice care are represented. Hospice and palliative care professionals that would like to learn more about becoming guest bloggers may call Growth House at 415-863-3045.We particularly are looking for professionals with backgrounds in social work, palliative medicine, hospice administration and reimbursement, and eldercare. If you've got something to say about those subjects, let us know.Our blogging portal offers news and views by opinion leaders such as Larry Beresford,
Dale Larson, Tim Cousounis, Susan W. Reynolds,
Debra Bradley Ruder, and other end of life specialists.
http://growthhouse.typepad.com/les_morgan/2010/02/growth-house-needs-bloggers.html
I'm often asked what's the "best book" for caregivers of persons affected by dementia. I've managed to narrow my suggestions down to two hadbooks that I like in particular. Both of them cover Alzheimer's Disease as well as other dementias, cognitive impairments, and memory loss late in life.
When Your Loved One Has Dementia by Joy A. Glenner et al. (John Hopkins University Press, ISBN 0-8018-8114-5, 137 pages). This short, well-organized book lives up to its title as "A Simple Guide For Caregivers". There are six chapters, all emphasizing the importance of good communications with family members as a method of ensuring the best possible quality of life for everyone involved. The handbook is written in a conversational style that is supportive and clear. From recognition of early warning signs of cognitive impairment to choosing a long-term care facility, the authors cover all of the basic issues without burdening the reader with excessive detail. The sections on effective communication techniques, managing behavior problems, and safety assessment are very practical. Helpful checklists make assessment straightforward.The 36-Hour Day by Nancy Mace and Peter Rabins (John Hopkins University Press, ISBN 0-8018-8509-4, 324 pages). This has been a classic in the caregiving literature for more than twenty-five years. It's a longer book that goes into more detail on some topics. It does an excellent job of explaining the wide range of cognitive deficits that can occur, and stresses the importance of accurate assessment and evaluation for a person with a suspected dementia. Characteristic behavioral symptoms and changes in mood and ideation are explained in detail. The impact of cognitive deficits on practical life and independent living, such as no longer being able to drive a car or manage money, all have specific impact on support needs. A wide range of problems arising in daily care and medical problems are examined in detail.
I get a lot of memoirs submitted for review. These all describe a specific caregiving experience that someone had with a loved one with dementia. Because the actual situation you are in may be very different from that of someone else, with different types of cognitive impairment, social support, financial resources, and relationships, many of these memoirs aren't specifically relevant to your case. That said, one of the more interesting recent memoirs I've read is "The Last of His Mind: A Year in the Shadow of Alzheimer's" by John Thorndike (Swallow Press, ISBN 978-0-8040-1122). What's unusual about this memoir is that it is written by a man describing his experience caring for his father. It's also exceptionally well-written, making it stand out from the pack of memoirs that often are written as part of a personal process of healing by a caregiver.
The author's father was Joe Thornkike, the managing editor of Life at the height of its popularity after World War II. Dad Thornkike was the author and editor of dozens of books, and the founder of American Heritage and Horizon magazines. By the age of ninety-one, in a short span of about six months, his impressive brain went to pieces and he lost even basic cognitive skills. The memoir is a moving account of how his now-adult son cared for his failing father in the last year of his life.
There are gender differences in coping styles, and a great many memoirs are written by women. The chance to read a "guy's book" about dementia is a rare and insightful experience. A few old photographs show a 1950's family that reminds me of myself when I was a boy. One picture (p. 64) shows the author as a teenager home for Christmas from boarding school sitting on a sofa with his mother. The young man sits impassively, drawing backwards slightly from his mother, who leans forward toward him with a loving smile. He is not looking back at her, and his pursed lips and folded arms across his chest suggest that he is doing his work as an adolescent boy, finding how to withdraw from mother and find strength within himself as a man. Guys will get what I mean.
http://growthhouse.typepad.com/les_morgan/2010/02/best-books-for-dementia-caregivers.html
The Growth House Legal Department wishes to extend the following seasonal greeting to you.The sender of this seasonal greeting affirms that he or she wishes that the recipient of the greeting have the most positive possible attitude for a period of two weeks, effective with the date of making of this greeting. This seasonal greeting is made subject to the following terms and conditions:This seasonal greeting is intended for the use of the individual recipient(s) to which it is directed and may contain information that is confidential, privileged or unsuitable for overly sensitive persons with low self-esteem, no sense of humour or irrational religious beliefs. If you are not the intended recipient, any dissemination, distribution or copying of this greeting is not authorized (either explicitly or implicitly) and constitutes an irritating social faux pas. Greeting is void if the recipient does not observe any seasonal holiday, festivity, or other periodic observance at the time of year when this offer is in force.Maker of this greeting does not accept any liability or financial responsibility, tacit or implied, to ensure that the recipient does in fact have a positive attitude, enjoyable experiences, amusing social interactions, receive gifts or other benefits, or have any other positive outcomes as a result of this greeting. If you are miserable, don't blame it on the maker of this greeting.Offer expires at the end of the seasonal period and does not imply that the maker of the greeting extends similar wishes at other time periods not explicitly covered by this offer.By reading the terms of this agreement you agree to abide by all of its provisions and to any other term or condition or restriction or requirement that the maker may clarify in the future.
http://growthhouse.typepad.com/les_morgan/2009/12/seasons-greetings-as-approved-by-our-legal-department.html
lesmorgan: Via GN: Quality Is A Priority For Only Half Of Hospital Boards: According to the first national study of.. http://bit.ly/A6ID1
http://twitter.com/lesmorgan/statuses/5865592565
I'm loving the outstanding new book by George A Bonanno, The Other Side of Sadness: What the New Science of Bereavement Tells Us about Life after Loss. It's an eye-opening review of recent research on how people differ in their responses to loss, and how many of things we believe to be true simply have no evidence to back them up.
Is going to a grief counselor dangerous to your mental health? The flap is about “TIDE” (no, not the laundry product). In this context TIDE refers to treatment-induced deterioration effects. In other words, does seeing a grief therapist make things worse? I've written about this question before. (See: "Grief Counseling Not Bad For You, Experts Say") That piece focused on a particularly dubious study. Also see “Negative views of grief counseling are not substantiated by the research, experts say” on the website of the American Psychological Association.)
For people in the grief support field Bonanno's book is a real page-turner. Bonanno is a clinical psychologist and professor at Columbia University. Despite his fancy academic credentials, he's a very good writer. The book is free of the turgid prose usually found in scholarly psychological journals. He successfully condenses the sometimes complex evidence base in a crisp, straightforward way. For those who want to know more, citations to the academic literature will help you track down the primary research.
Everybody "knows" that grief is a five-stage process, right? Denial, anger, bargaining, depression, acceptance, yada, yada. But wait! Bonanno says that this model, widely popularized by Elisabeth Kübler-Ross, "does not, in fact, represent what the majority of us go through when we lose a loved one." In particular, the model does not give much credit to the human capacity for "resilience". Into every life a little rain must fall. Most of us take a licking and keep on ticking, even without professional help. In the past few years the role of this capacity for resilience has been hotly debated. Bonanno's book is a readable and well-documented review of the controversies. He gives center stage to studies showing that most folks are not particularly emotionally fragile. In fact, they are tougher than we give them credit for.
But this ability to bounce back from a loss doesn't work for everyone, all the time. About 10 to 15 percent of people who experience a serious loss can experience clinical depression or other long-lasting emotional problems as a result of it. That group of seriously troubled people may get the most benefit from professional support. The rest of us generally do just fine if left to our ourselves, with support from our friends and family. Instead of reflexively considering every loss as a treatable medical condition, it makes more sense to provide assessment services to help identify when things are getting out of hand, offering supportive services when the road is unusually rocky.
Bonanno isn't just a heartless guy who tells his clients, "Sorry for your loss, get over it." He has a compassionate tone that shows great perceptiveness to the range of emotions during periods of loss. His final chapter, titled "Thriving in the Face of Adversity", recognizes the universal nature of the human condition and gives hope by saying that "We dread these events, but when they happen we have no choice but to deal with them as best we can. Fortunately, most of us deal with them remarkably well." Other chapters deal with special issues in loss, such as trauma counseling and cultural variations in grief.
The book is getting some buzz outside academic circles. Paula Span gave it a positive review in the New York Times' "New Old Age" blog (October 22, 2009).
http://growthhouse.typepad.com/les_morgan/2009/11/the-other-side-of-sadness-what-the-new-science-of-bereavement-tells-us-about-life-after-loss.html
I'm pleased to announce that the Promoting Excellence in End-of-Life Care archive of materials is now available on the web as a Growth House service. The site can be reached both at http://promotingexcellence.org and at http://promotingexcellence.growthhouse.org.
Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes to improve health care for dying people and their families. Through the work of innovative demonstration projects and national workgroups the project strived to address particular challenges to existing models of hospice and palliative care. The Promoting Excellence project was a time-limited project and no longer operates. The results of its work are archived by Growth House, Inc. for the ongoing benefit of the field.
From offices at the Center for Ethics at The University of Montana, this program supported innovative demonstration projects in health care settings and national workgroups comprised of clinicians and researchers from across the country to deliver palliative care to special populations in often challenging settings. One of the most popular sections of the site has been its collection of key clinical assessment and research tools.
During the time the project was active, it used Growth House's content management system to develop their collection of materials. After the project's active phase ended an archival version of the site was maintained for some time by the National Hospice and Palliative Care Organization (NHPCO). When NHPCO's stewardship came to an end, Growth House accepted a request to keep the archive alive. I'm delighted to say that this large collection of materials, which now includes over 1,400 pages and downloadable files, has come back home to Growth House. I want to personally thank both the original National Program Office leadership and the technical staff at NHPCO for their assistance during the conversion effort to get the site up and running on our systems.
http://growthhouse.typepad.com/les_morgan/2009/11/promoting-excellence-in-endoflife-care-archive-at-growth-house.html
Medicare already provides a web site to let the public compare nursing homes on various metrics. It's time we had a similar site for hospice data.
I have to wonder why there isn’t a Hospice Compare already. Congress should say that's unacceptable. There should be a national hospice quality database because of the tremendous variation in quality. The hospice industry continues to operate in a pre-health care-transparency mode, but technology forces will drive another outcome. The name of the game with Health Information Technology these days is standardization of data flows and increased transparency for governmental data.
CMS isn't the only game in town, of course. But since Medicare pays for most hospice care, its already sitting on a gold mine of raw data. There are three types of metrics that could be used: descriptive data, cost data, and quality data.
Descriptive data such as location, length of stay, annual death count, number of facilities, etc., are not debatable and could be included right away. We might disagree with what they mean, but at least we know what they are.
Cost data is also easy (sort of), As an information technologist, when I see what Medicare is already doing with consolidation of existing data feeds, I believe they could decide to post hospice cost report data next week and call it Hospice Compare Version 1.0. It's not rocket science. If providers want Medicare to pay them, they have to fill out forms. Anything that goes on a form can wind up on a public web site. I'm sure if CMS did that hospices would be outraged, but then the hospice industry would have to negotiate with CMS to come up with a reporting system they liked better. What would follow would be healthy conflict.
Quality is in the eye of the beholder, it seems. Several different approaches to quality metrics are under discussion within the hospice industry itself. Larry Bereford is working on a review of those approaches. What the hospice industry may not appreciate fully is that the drive for data transparency in government spending may accelerate the appearance of a Hospice Compare website designed without their control.
Other groups such as the Joint Commission also give out report cards, such as their new data on "most difficult" compliance metrics for various healthcare provider types (See: http://www.jointcommission.org/Library/jconline/jco_11_04_09.htm). Notice the absence of "Hospice" as a reporting category there. I wonder what it would take to change that?
http://growthhouse.typepad.com/les_morgan/2009/11/its-time-for-a-hospice-compare-web-site.html
lesmorgan: Creating the Virtual Integrated Delivery System.Good update on trends in chronic disease management programs: http://tinyurl.com/ycxxs34
http://twitter.com/lesmorgan/statuses/4685887256
lesmorgan: Via GN: The Day After: Obama’s Speech And The Politics Of Health Reform: On September 22, 1993, President.. http://bit.ly/L9ULM
http://twitter.com/lesmorgan/statuses/3903365062
lesmorgan: RT @john_chilmark: RT @omnimd: HHS expected to announce state health IT funding http://ping.fm/eSZI2 http://bit.ly/234vD
http://twitter.com/lesmorgan/statuses/3451567504
lesmorgan: Top ten misconceptions about health reform. "Death panels" are #1 on the list. http://tinyurl.com/r2mgt3
http://twitter.com/lesmorgan/statuses/3385421621
lesmorgan: Via GN: Funding opportunity: Sojourns Pathway Program: Hospital-Based Palliative Care Innovation Grants: .. http://bit.ly/R7Va3
http://twitter.com/lesmorgan/statuses/3376988887
lesmorgan: Liking @SusanWReynolds blog piece on how to rethink all the photos and mementos around the house after a death: http://tinyurl.com/qzh6xj
http://twitter.com/lesmorgan/statuses/2389128336
lesmorgan: California Controller John Chiang says state may need to issue IOUs (registered warrants) beginning July 2nd: http://tinyurl.com/maytkk
http://twitter.com/lesmorgan/statuses/2314445352
lesmorgan: @symtym What do you do with the unplaceable frail elderly? Is there any specific referral, even for just further screening?
http://twitter.com/lesmorgan/statuses/2226487162
lesmorgan: Allen White, long-time SF gay activist has died. Another old-timer gone. http://tinyurl.com/llmtdx
http://twitter.com/lesmorgan/statuses/2226460317
lesmorgan: Via GN: NAHA Release New Study of Medicare Hospice Data: The National Alliance for Hospice Access issued a .. http://tinyurl.com/nbdfft
http://twitter.com/lesmorgan/statuses/2218411704
lesmorgan: Via GN: CODAalliance: Compassionate Care Conference in San Jose, October 15, 2009 with Dr. McCullough. En.. http://tinyurl.com/nuob7j
http://twitter.com/lesmorgan/statuses/2187514125
lesmorgan: Cutting safety net programs will increase ER use (Modesto Bee editorial) http://tinyurl.com/kwhc7a
http://twitter.com/lesmorgan/statuses/2109628899
lesmorgan: Via GN: Avoiding the Call to Hospice: Patients and their families too often hesitate to call hospice. Why.. http://twurl.nl/4csrf6
http://twitter.com/lesmorgan/statuses/1928031907
lesmorgan: Don't be evil. Google faces antitrust investigation over book digitizing. Archive.org interview: http://tinyurl.com/coznus
http://twitter.com/lesmorgan/statuses/1768823720
lesmorgan: @healthblawg: The CHIME is a practical approach that you would expect from folks who have to actually run this stuff. #ARRA #HITECH #NCVHS
http://twitter.com/lesmorgan/statuses/1699423268
lesmorgan: Via GN: Specter's MTP Appearance: A Silver Lining?: Arlen Specter used his "Meet the Press" app.. http://tinyurl.com/ckuarc
http://twitter.com/lesmorgan/statuses/1697296924
lesmorgan: @HospiceChicago Thanks for your help regarding the dementia discussion. Can I invite you to participate?
http://twitter.com/lesmorgan/statuses/1630653229
lesmorgan: Noticing that section D of HR 1898 requires that the directive be "portable across care settings", which may stimulate HIT for care planning
http://twitter.com/lesmorgan/statuses/1622200754
lesmorgan: RT @bart: Reading: "Myca and Hello Health Preview Their Facebook-like Medical Platform -Fast Company" ( http://tinyurl.com/clpdcg )
http://twitter.com/lesmorgan/statuses/1588151551
lesmorgan: Via GN: Lawmakers urge White House to halt DME bidding rule: A bipartisan group of 84 lawmakers is urging.. http://tinyurl.com/ck6ymg
http://twitter.com/lesmorgan/statuses/1539606801
One of my favorite tools for Advance Care Planning discussions is the Go Wish card "game" provided by the nice folks over at the CODA Alliance. The cards were developed by hospice physician Elizabeth Menkin, M.D., based on review of the literature on what issues are most important to real people who are faced with end of life decisions. The items on the cards were derived in part from results of a survey reported by Steinhauser, K. E. et al. "Factors Considered Important at the End of Life by Patients. Family, Physicians, and Other Care Providers." JAMA. 2000;284:2476-2482
I'm such a fan of these simple cards that I did a podcast with Dr. Menkin explaining how the game works, using myself as the guinea pig. You can listen to my own advance care planning discussion with her explaining how the game works: (download podcast, mp3, 40:32). If you have questions about anything in that podcast, send me a tweet.
The game is a set of 36 cards, each with a short statement of things people often cite as being important to them in the last weeks or months of life. The format is similar to playing cards, and referring to it as a "game" helps make it less scary to think about the subject. You can use the cards either in "solitaire" mode or with another person. If you are an end-of-life professional such as a hospice or palliative care worker you can easily introduce the game to someone in just a few minutes. I've found that people warm up to the cards quickly and have no problems using them to prime the pump in care planning. Unlike filling out forms, the cards stimulate conversations that uncover values and preferences for end of life care.
Coda Alliance sells the cards to the general public and to health professionals. The cards have been extensively field testing in a wide range of settings, including community meetings, family gatherings, and in church lunch-and-learn groups. When exposed to the cards, people often want to have a set to take home so they can "play the game" with elderly parents or their young adult children, to help them prepare for their possible role as a health care agent.
The game is useful for social workers, health educators, or chronic conditions case managers meeting with patients and their loved ones trying to get conversations started about end of life care. Hospice social workers use the cards to stimulate discussions about what the patient still may hope for.
The starter game comes with two packs of cards in contrasting colors and instructions for using the cards individually or in pairs. Card packs may also be purchased in bulk.
Once you have had your conversation you can record it using an Advance Directive Form such as the California forms provided for free by CODA.
Les says "Check them out!"
http://growthhouse.typepad.com/les_morgan/2009/04/go-wish-cards-for-advance-care-planning.html
"I'm just a patsy!"-- The French Guy
Ok, so now we hear that a single programmer's slip of the finger caused the massive Amazon fiasco. I don't buy it. It's the Lone Gunman Theory of Amazonfail
I've been in information technology for my entire career, and if I gave an answer like that to some of my past bosses I would have been fired. What was wrong with the design of the system itself that permitted such an outcome? The underlying logic of the database design may turn out to be the real villain, laced with dark assumptions about the ontology of sex. I guess being gay just means being part of the larger Venn diagram of "adult things" which in turn falls within the larger circle of "upsetting things" which is further subsumed under "things that will frighten the horses."
I don't think the management at Amazon is evil. It was a "glitch" that they are rushing to "fix". Great. Get it running again, and they do the post mortem, as we generally do in information tech circles when something goes really wrong. But please, can we have some transparency during that next phase? We haven't had much transparency so far. But Amazon could still turn this lemon into lemonade if they will only get off the dime and do more proactive communication. For good comments on the PR problems check How to Weather a Twiiterstorm.
http://growthhouse.typepad.com/les_morgan/2009/04/amazonfail-the-lone-gunman-theory.html
lesmorgan: Via GN: Number of People With Alzheimer's Growing Annually, Increasing Costs, Report Finds: The number of.. http://tinyurl.com/dzlfd6
http://twitter.com/lesmorgan/statuses/1392159934
lesmorgan: Via GN: Income not keeping pace with health insurance cost: A recent report from Cover the Insured.org re.. http://tinyurl.com/dc3j34
http://twitter.com/lesmorgan/statuses/1386316908
lesmorgan: Just installed the new free version of Serna XML Editor, which has TEI P5 support and tons of other XML goodies: http://tinyurl.com/csfd3v
http://twitter.com/lesmorgan/statuses/1374228715
lesmorgan: RT @larryberesford: Stark's Tues. hearing on MedPAC March report (http://tinyurl.com/c7p5mj) didn't get to hospice reccs
http://twitter.com/lesmorgan/statuses/1356149469
lesmorgan: RT @gutelius: Aleks Jakulin on electronic medical records and what statistics can do: http://tinyurl.com/cdgqmp
http://twitter.com/lesmorgan/statuses/1317720333
lesmorgan: RT @kasthomas: JDK-JRE updated to reject non-shortest-form UTF-8 codes (security issue) http://tinyurl.com/dmqtz6
http://twitter.com/lesmorgan/statuses/1311562479
lesmorgan: @ctorgan Chronic disease and prevention got some good play in breakout session 5 (the one I followed) #whhcs
http://twitter.com/lesmorgan/statuses/1285413609
lesmorgan: John Dingell speaking, just said "We need to talk about mandatory coverage" and pointed out that Obama does not mention this
http://twitter.com/lesmorgan/statuses/1284744611
lesmorgan: Watching Obama address the healthcare summit on Fox news now. Key theme is that control of healthcare costs is essential.
http://twitter.com/lesmorgan/statuses/1284453470
lesmorgan: @healthblawg Some cloud vendors are claiming HIPAA compliance, which leaves me wondering how that could be validated. Anybody know?
http://twitter.com/lesmorgan/statuses/1267441143
lesmorgan: Via GN: Lucene 2.4 in 60 seconds: This is a tutorial on getting started with the Lucene 2.4 Java API whic.. http://tinyurl.com/cpvx44
http://twitter.com/lesmorgan/statuses/1227462997
lesmorgan: New cost report on how cancer patients face huge challenges in paying for life-saving care even when insured: http://tinyurl.com/acgzo4
http://twitter.com/lesmorgan/statuses/1183429166
lesmorgan: Reading a new blog "Life as a hospice patient" by a home-hospice patient with COPD: http://tinyurl.com/bse7jl
http://twitter.com/lesmorgan/statuses/1170816894
lesmorgan: RT @HIPAA_explained: Why ICD-10?: There were four main reasons that federal government moved to ICD-10: http://tinyurl.com/c2tm3x
http://twitter.com/lesmorgan/statuses/1159033143
lesmorgan: @symtym This whole evaluation is due to the fact that I am junking the custom-built Cold Fusion CMS system we used for 10 years.
http://twitter.com/lesmorgan/statuses/1153098038
We Love Each Other by Julie McLellan-Marino is a workbook for grieving kids aged 9 or 10 and older. It describes itself as "a healing journal for children" but I see it more as an activity book. The format is "hands-on" and encourages the child to draw, paste photos, and write stories as part of a supportive process of remembering the person who died, particularly a mom or dad. Providing a range of activity types is a smart move, since kids vary a lot in their preferred communication styles. The mix of journaling and expressive tasks has a good secondary goal of getting the child to tell their own story in their own way, which makes the child aware that their perspective is important and builds self-esteem. Sort attention spans are OK. You can do the pages a little bit at a time over several weeks, making it suitable for an ongoing bereavement group or drop-in session. I'm not sure how many kids would do the activities entirely on their own, but as a tool within the context of professional support it's definitely worth a look. It has been used by hospice counselors in and bereavement camp settings. It incorporates a dual-process model of grief. Loss-oriented coping is supported by evoking memories of life with the person who died and validating feelings ("all of your feelings are normal so let them out", "don't let any yucky feelings stay inside you and hurt you or your heart or your mind or your body or your spirit"). Restoration-oriented coping is supported by helping the child rebuild their sense of self within the new reality of life without the loved one being physically present ("if you feel mad shoot some baskets or hit your pillow and if you feel sad draw some pictures or let yourself cry").Skillful grief support works to overcome denial of the reality of death while affirming the reality of the continual emotional bonds. Just because someone is dead does not mean that the emotional relationship with that person is over. On the contrary, absence can make the heart grow fonder. This book does a good job of saying that it is love that survives, not the literal parent. Language like "our LOVE survives," "I LIVE in your heart," and "my body died but my LOVE for you survived" reinforce the importance of the positive introjected parent, which can be a source of ongoing support for the child. This is an age-appropriate and mature approach. Some books on grief directed at kids take the easy way out by asserting that mommy or daddy did not really die, but just went away to heaven. That model of the invisible but surviving parent is too facile, and while it may be needed with some very young children it can fail to acknowledge the real loss the child is experiencing. We Love Each Other is non-denominational and does not mention any particular religious views but frequently expresses the belief that who you are is not only based on the existence of your body ("for some reason it was time for my body to die", "my body died but my LOVE for you survived"). The absence of specific religious framing does not preclude its use within a religious setting, since the general message can be complemented by other messages about survival that fit a particular denominational belief system. But if you are looking for pictures of angels in clouds, there are none. The bright artwork features a lot of hearts and geometric shapes in cheerful primary colors.
http://growthhouse.typepad.com/les_morgan/2009/01/we.html
Update Sources