We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in a hospital. More than 80% of Californians say their loved ones know exactly or have a good idea of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences. But our end of life experiences are about a lot more than statistics. They are about all of us.
So the first thing we need to do is start talking. Engage with Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we are asking people to share this One Slide -- wherever and whenever they can -- at a presentation, at dinner, at their book club. Just One Slide, just five questions.Lets start a global discussion that, until now, most of us haven't had.
Here is what we are asking you: Download The One Slide and share it at any opportunity --with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them.
Just One Slide, just one goal. Think of the enormous difference we can make together. (To learn more please go to http://www.engagewithgrace.org/)
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As a side note, the origins of this movement are chronicled in a very interesting article in today's Boston Globe. Check it out.
Wednesday, November 26, 2008
Thursday, November 20, 2008
Fox Guarding the Chicken Coop? In the Bag?
There was a story in last Friday’s Globe about Jason Fox, a young child who died at Children’s Hospital, and the investigation surrounding his death. Just looking at the picture of this beautiful baby boy, one can’t help but feel enormous sympathy for his grieving family. The loss of a child is an unimaginable tragedy.
There are serious allegations of withheld medical records, substandard care, and so on. We won't comment on the facts of the case as there is a great deal of investigation going on by a number of parties, and it is unclear from the article exactly what happened. What is clear, however, is that a family has been devastated. We know, too, that the clinicians (the doctors, nurses, and everyone else involved in Jason's care) must also be significantly affected by Jason's death.
Sometimes events like these can have a polarizing effect, and they serve to trigger strong emotions on all sides. This is especially evidenced in the online reader comments to the story. Unfortunately, we can still see an “us against them” mentality. At MITSS, we recognize that adverse events have significant consequences for ALL involved, and we advocate for patients/families, clinicians, and healthcare institutions to work together to find common ground and work toward effective solutions. After all, we are all human, and we all have a stake in safe, quality healthcare.
One reader comment stuck out for us especially, and we felt it important to comment. Sconiico writes…
Classic example of the fox guarding the chicken coop…
- heck, the lay group formed to help such victims (Medically induced trauma support services aka MITSS) has its office rent paid by Brigham & Womens Hospital. Everyone is in the bag!...
In the interests of complete transparency, we’d like to offer the following response:
As a small non-profit, MITSS relies on the generous donations (financial and in-kind) of organizations and individuals from both in and out of healthcare. Brigham and Women's Hospital has generously provided us with an in-kind donation of office space. They, like our other donors, support our mission and share our vision. However, we remain an autonomous organization governed by our own independent Board of Directors. We would invite anyone to contact us at (617) 232-0090 or visit our website at http://www.mitss.org/ and would welcome the opportunity to clear up any other misconceptions.
Appropriately, the theme of our annual event last week was Together, Moving Forward!, and that is our sincerest hope for the upcoming year.
There are serious allegations of withheld medical records, substandard care, and so on. We won't comment on the facts of the case as there is a great deal of investigation going on by a number of parties, and it is unclear from the article exactly what happened. What is clear, however, is that a family has been devastated. We know, too, that the clinicians (the doctors, nurses, and everyone else involved in Jason's care) must also be significantly affected by Jason's death.
Sometimes events like these can have a polarizing effect, and they serve to trigger strong emotions on all sides. This is especially evidenced in the online reader comments to the story. Unfortunately, we can still see an “us against them” mentality. At MITSS, we recognize that adverse events have significant consequences for ALL involved, and we advocate for patients/families, clinicians, and healthcare institutions to work together to find common ground and work toward effective solutions. After all, we are all human, and we all have a stake in safe, quality healthcare.
One reader comment stuck out for us especially, and we felt it important to comment. Sconiico writes…
Classic example of the fox guarding the chicken coop…
- heck, the lay group formed to help such victims (Medically induced trauma support services aka MITSS) has its office rent paid by Brigham & Womens Hospital. Everyone is in the bag!...
In the interests of complete transparency, we’d like to offer the following response:
As a small non-profit, MITSS relies on the generous donations (financial and in-kind) of organizations and individuals from both in and out of healthcare. Brigham and Women's Hospital has generously provided us with an in-kind donation of office space. They, like our other donors, support our mission and share our vision. However, we remain an autonomous organization governed by our own independent Board of Directors. We would invite anyone to contact us at (617) 232-0090 or visit our website at http://www.mitss.org/ and would welcome the opportunity to clear up any other misconceptions.
Appropriately, the theme of our annual event last week was Together, Moving Forward!, and that is our sincerest hope for the upcoming year.
Wednesday, November 5, 2008
Not Able to Attend Our 7th Annual Dinner and Fundraiser -- Not to Worry!
Our last blog post referred to how busy we've been getting ready for our Annual Dinner. I am happy to report that this year we are doing something different. We will be videotaping the keynote speakers for the purpose of streaming the video from our website. We hope that those who aren’t able to make our dinner will be able to enjoy the important highlights.
Our keynote speakers are both extremely dynamic change agents in Healthcare. Margaret Murphy from Ireland is a member of the WHO, World Alliance for Patient Safety, Patients for Patient Safety Steering Group. Margaret sees patients and families as a seriously under-used resource. Following the death of her son as a result of medical error, she became actively involved, sharing her family’s experience and engaging positively with healthcare systems and professionals. Her story is one of pain, needless suffering and death, and HOPE!
Paul F. Levy was appointed President and Chief Executive Officer of the Beth Israel Deaconess Medical Center in Boston in January 2002. He is the author of numerous articles in a variety of fields and co-author of Negotiating Environmental Agreements (Island Press, 1999). He is author of a blog entitled “Running a Hospital,” and in that regard is one of the very few hospital CEOs to share thoughts publicly about hospitals, medicine, and health care issues.
We will let you know as soon as we have these videos up and running from our site. As always, we will welcome your comments once you’ve had a chance to view.
Linda Kenney
MITSS
Executive Director
Our keynote speakers are both extremely dynamic change agents in Healthcare. Margaret Murphy from Ireland is a member of the WHO, World Alliance for Patient Safety, Patients for Patient Safety Steering Group. Margaret sees patients and families as a seriously under-used resource. Following the death of her son as a result of medical error, she became actively involved, sharing her family’s experience and engaging positively with healthcare systems and professionals. Her story is one of pain, needless suffering and death, and HOPE!
Paul F. Levy was appointed President and Chief Executive Officer of the Beth Israel Deaconess Medical Center in Boston in January 2002. He is the author of numerous articles in a variety of fields and co-author of Negotiating Environmental Agreements (Island Press, 1999). He is author of a blog entitled “Running a Hospital,” and in that regard is one of the very few hospital CEOs to share thoughts publicly about hospitals, medicine, and health care issues.
We will let you know as soon as we have these videos up and running from our site. As always, we will welcome your comments once you’ve had a chance to view.
Linda Kenney
MITSS
Executive Director
Friday, October 17, 2008
WE NEED YOUR HELP!
You may have noticed that this space has been a bit quiet of late. It’s not for lack of things to talk about, issues to sound off on, or news to share. It’s that time of year again – fundraising season. Sometimes it feels like Santa’s Workshop as Christmas Eve nears – staff and volunteers are working furiously as our 7th Annual Dinner and Fundraiser, scheduled for November 6th, draws closer.
It’s never easy to ask for money, but the services that MITSS is able to offer and the number of people that we are able to help are entirely dependent on our doing just that. Times are difficult for everyone this year, but every little bit helps, and we really need your support.
Join us for our 7th Annual Dinner on Thursday, November 6th, 2008, at the Renaissance Boston Waterfront Hotel, from 5:30 to 10 pm. It’s going to be a great event as we feature Paul Levy, President and CEO of the Beth Israel Deaconess Medical Center, and Margaret Murphy, a member of the WHO’s World Alliance for Patient Safety and a mother whose son died due to a medical error, as our keynote speakers. The incomparable Billy Costa of NECN and KISS 108 will be our emcee and preside over a fabulous live auction. For tickets, call Winnie Tobin at (617) 232-0090, e-mail at wtobin@mitss.org, or click here.
Another way to help MITSS is to participate in our 2008 Online Auction. We are going live on Monday, October 20th and will be taking bids through November 3rd. Click here to preview the fantastic items that our wonderful Planning Committee has assembled. Check back often as our catalog will be updated when donations come in. Win an exciting prize while supporting the work of MITSS!!!
We hope to see you on November 6th. Best of luck with your auction bids!
It’s never easy to ask for money, but the services that MITSS is able to offer and the number of people that we are able to help are entirely dependent on our doing just that. Times are difficult for everyone this year, but every little bit helps, and we really need your support.
Join us for our 7th Annual Dinner on Thursday, November 6th, 2008, at the Renaissance Boston Waterfront Hotel, from 5:30 to 10 pm. It’s going to be a great event as we feature Paul Levy, President and CEO of the Beth Israel Deaconess Medical Center, and Margaret Murphy, a member of the WHO’s World Alliance for Patient Safety and a mother whose son died due to a medical error, as our keynote speakers. The incomparable Billy Costa of NECN and KISS 108 will be our emcee and preside over a fabulous live auction. For tickets, call Winnie Tobin at (617) 232-0090, e-mail at wtobin@mitss.org, or click here.
Another way to help MITSS is to participate in our 2008 Online Auction. We are going live on Monday, October 20th and will be taking bids through November 3rd. Click here to preview the fantastic items that our wonderful Planning Committee has assembled. Check back often as our catalog will be updated when donations come in. Win an exciting prize while supporting the work of MITSS!!!
We hope to see you on November 6th. Best of luck with your auction bids!
Friday, October 3, 2008
MITSS ONLINE AUCTION IS READY FOR PREVIEW!!
This year, as part of the MITSS Annual Fundraiser, we have put together an exciting Online Auction. Anyone can participate!!! Preview our Online Auction at cMarket by clicking here! From now until October 20th, check out our fabulous auction prizes.
The actual bidding will go Live on October 20th and be open through November 3rd. We will be adding new items to our catalog, so check back often to see what’s new. Feel free to place a Watch on your favorites so that you’ll know as soon as the bidding begins.
We need your help! By supporting our Annual Dinner and Online Auction, you will be helping to fund the vital work that we do.
The actual bidding will go Live on October 20th and be open through November 3rd. We will be adding new items to our catalog, so check back often to see what’s new. Feel free to place a Watch on your favorites so that you’ll know as soon as the bidding begins.
We need your help! By supporting our Annual Dinner and Online Auction, you will be helping to fund the vital work that we do.
Wednesday, September 24, 2008
SCRUBS IN PUBLIC -- A HEALTH HAZARD?
Given Linda's experience over the past year with MRSA (which has been chronicled in this blog -- see post below) in addition to the fact that my 3 year old niece was just diagnosed, I wondered whether or not I was beginning to get "germ phobic."
There was an interesting piece in the NY Times Well Blog yesterday that deals with the issue of wearing scrubs in public places. This is something which I had never given a thought to before -- I've seen medical people wearing scrubs at the supermarket, at the dry cleaners, in the dentist's office, and all those other places that we "regular" people frequent in our daily lives. (I was probably even a little impressed up until now -- especially if they had a stethoscope hung around their neck.) Now, I'm thinking "Typhoid Mary" and looking for the quickest exit!
Seriously, though, this brings up an important point. Are you alarmed when you see someone wearing their scrubs in public? If you're not, should you be?
Winnie Tobin
There was an interesting piece in the NY Times Well Blog yesterday that deals with the issue of wearing scrubs in public places. This is something which I had never given a thought to before -- I've seen medical people wearing scrubs at the supermarket, at the dry cleaners, in the dentist's office, and all those other places that we "regular" people frequent in our daily lives. (I was probably even a little impressed up until now -- especially if they had a stethoscope hung around their neck.) Now, I'm thinking "Typhoid Mary" and looking for the quickest exit!
Seriously, though, this brings up an important point. Are you alarmed when you see someone wearing their scrubs in public? If you're not, should you be?
Winnie Tobin
Sunday, September 21, 2008
IT TAKES A VILLAGE!
Many of you may know that last June I finally had my long awaited ankle replacement surgery. There were a few detours during the healing process. I ended up with a post-op infection, IV antibiotics for six weeks, an open wound that needed dressing twice a day, foot that needed to be elevated during most of that time, and a skin graft. All this took me out of work for about three months. I was then put on oral antibiotics until January. From January until last week, I would get flare-ups of extreme swelling, pain, and redness. My doctor had fluid taken from my ankle a couple of times to make sure the infection was not in the joint. The results from this always came back negative, but the swelling, pain, and redness continued.
Last week, I went to my orthopedic surgeon with the ankle swollen (the worst I had seen yet), painful to the touch, and an angry red color in a certain part. The x-rays didn't show anything -- everything looked great structurally. Together, we made the decision to go in and take out a plate and some screws in the area that was most painful. By the time I went in for surgery on Wednesday (Sept. 10th), I thought my skin would burst from the ankle being so swollen. The screws and plate were removed, but everything else looked good. They took some cultures which didn't show anything. Hopefully, it was just an irritation of the screws and plate with the tissue. Between the ortho doc and the infectious disease (ID) doc, the decision was made to put me on IV antibiotics for at least three weeks. They inserted a pic line and prescribed vancomycin, and then I was discharged. I am also non-weight bearing for a couple of weeks until I get the stitches out.
I have now been at home for a week and a half. I would have been to work sooner if I didn't get hit with the flu in the midst of all this. I realize that what I am going through is so minor compared to what others go through -- after all, I still have my foot, and it's only a few weeks out of my life. It always amazes me, though, how much these recoveries affect everyone. There has been a strain put on my husband, my children, my co-workers, and myself. This is a reality that isn't talked about much when we discuss complications or unanticipated outcomes -- how these setbacks affect so many people!
My family has been doing everything I can't -- all the driving, shopping, cooking, laundry, waiting on me, etc... They don't seem to mind it, as they have actually become used to it over the years. But, I can still see the strain. My co-workers are picking up all the slack at the office, and that adds even more pressure. For me, it's extremely difficult to be so reliant on everyone. As much as I hate to admit this, as I get older, I just don't bounce back as quickly as I used to. For the first few days, I was okay with just healing. Then, I started to get anxious about all the things I needed to do, but I still couldn't focus even if I wanted to. I do realize that what I am going through is pretty minor in the grand scheme of things. I know that I am fortunate to have the support of family and friends around me!
We need to start having dialogue around the impact that goes well beyond the patient's physcial recovery following complications, unanticipated outcomes, and medical error. I would love to hear from those of you with similar experiences. I welcome all your comments.
With warm regards,
Linda
Last week, I went to my orthopedic surgeon with the ankle swollen (the worst I had seen yet), painful to the touch, and an angry red color in a certain part. The x-rays didn't show anything -- everything looked great structurally. Together, we made the decision to go in and take out a plate and some screws in the area that was most painful. By the time I went in for surgery on Wednesday (Sept. 10th), I thought my skin would burst from the ankle being so swollen. The screws and plate were removed, but everything else looked good. They took some cultures which didn't show anything. Hopefully, it was just an irritation of the screws and plate with the tissue. Between the ortho doc and the infectious disease (ID) doc, the decision was made to put me on IV antibiotics for at least three weeks. They inserted a pic line and prescribed vancomycin, and then I was discharged. I am also non-weight bearing for a couple of weeks until I get the stitches out.
I have now been at home for a week and a half. I would have been to work sooner if I didn't get hit with the flu in the midst of all this. I realize that what I am going through is so minor compared to what others go through -- after all, I still have my foot, and it's only a few weeks out of my life. It always amazes me, though, how much these recoveries affect everyone. There has been a strain put on my husband, my children, my co-workers, and myself. This is a reality that isn't talked about much when we discuss complications or unanticipated outcomes -- how these setbacks affect so many people!
My family has been doing everything I can't -- all the driving, shopping, cooking, laundry, waiting on me, etc... They don't seem to mind it, as they have actually become used to it over the years. But, I can still see the strain. My co-workers are picking up all the slack at the office, and that adds even more pressure. For me, it's extremely difficult to be so reliant on everyone. As much as I hate to admit this, as I get older, I just don't bounce back as quickly as I used to. For the first few days, I was okay with just healing. Then, I started to get anxious about all the things I needed to do, but I still couldn't focus even if I wanted to. I do realize that what I am going through is pretty minor in the grand scheme of things. I know that I am fortunate to have the support of family and friends around me!
We need to start having dialogue around the impact that goes well beyond the patient's physcial recovery following complications, unanticipated outcomes, and medical error. I would love to hear from those of you with similar experiences. I welcome all your comments.
With warm regards,
Linda
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