The following are two definitions of palliative care.
Palliative care for children and young people with life-limiting conditions is an active and total approach to care, from the point of diagnosis or recognition, embracing physical, emotional, social and spiritual elements through to death and beyond. It focuses on enhancement of quality of life for the child/young person and support for the family and includes the management of distressing symptoms, provision of short breaks and care through death and bereavement. The Association for Children’s Palliative Care (ACT)
Palliative Care is comprehensive, specialized care provided by an interdisciplinary team to patients and families living with a life-threatening or severe advanced illness expected to progress toward dying and where care is particularly focused on alleviating suffering and promoting quality of life. Major concerns are pain and symptom management, information sharing and advance care planning, psychosocial and spiritual support, and coordination of care. The American Academy of Hospice and Palliative Medicine
Do they say the same thing? No, not at all. The first definition bases the need for services on the disease only (from the point of diagnosis or recognition...through to death and beyond). While the second definition bases the need for services on the progression of the disease (life-threatening or severe advanced illness) which is subjective and allows medical professionals to put off the discussion. This further reinforces the perception that palliative care is about death and not about enhancing life. Furthermore the second definition does not account for services the family will need subsequent to the death of the patient.
In my opinion the differences between these definitions are a key factor in helping us understand why palliative care services in the UK are at least 20 years ahead of those in the US.
Identify and Confront the Issues
Some things are really hard to deal with. However, if you want to affect change usually the best choice is to take the direct approach. It may be uncomfortable. It may be downright painful, but until you can name the issues and identify them openly and honestly you can never deal with them.
Take for example pediatric palliative care. People don't like to talk about it because it forces them to deal with death and dying. Even worse, to deal with children dying and of course we all know that children are not supposed to die. So, we just don't talk about it. We find other words to describe it (which just confuses people) and we put off the conversation until it is too late to do anything about it. Once you confront the issue though, you can talk about it. So guess what ***BREAKING NEWS*** I'm going to die, you are going to die, and too many really sick kids in this world are going to die. I'm sorry. It is an awful fact, but it is a fact. So now that we have identified that fact, let's move on and have honest conversations about how we are going to maximize the quality of life for children with complex health care needs, together with their families, from diagnosis through death and beyond. Ignoring it won't make it go away but it will most certainly make the process more painful and lead to more regret. If managed correctly dying only has to be painful for those left behind and far too often that is not the case.
I've picked an extreme example because it is something I'm passionate about seeing changed, but the same principle can be applied to family issues, marital issues, work issues, etc. Yes, the conversations may be very painful but long term, not having them will be more painful.
Take for example pediatric palliative care. People don't like to talk about it because it forces them to deal with death and dying. Even worse, to deal with children dying and of course we all know that children are not supposed to die. So, we just don't talk about it. We find other words to describe it (which just confuses people) and we put off the conversation until it is too late to do anything about it. Once you confront the issue though, you can talk about it. So guess what ***BREAKING NEWS*** I'm going to die, you are going to die, and too many really sick kids in this world are going to die. I'm sorry. It is an awful fact, but it is a fact. So now that we have identified that fact, let's move on and have honest conversations about how we are going to maximize the quality of life for children with complex health care needs, together with their families, from diagnosis through death and beyond. Ignoring it won't make it go away but it will most certainly make the process more painful and lead to more regret. If managed correctly dying only has to be painful for those left behind and far too often that is not the case.
I've picked an extreme example because it is something I'm passionate about seeing changed, but the same principle can be applied to family issues, marital issues, work issues, etc. Yes, the conversations may be very painful but long term, not having them will be more painful.
Are you too rationale?
Ever have trouble figuring out why people do the things they do? Maybe the problem is you are thinking too rationally and if you give that up you will understand people better.
Happy Birthday to my best friend.
This one is a little personal so thanks for indulging me. I could not let the day go by without publicly saying Happy Birthday to the most beautiful person I have ever met. Today I celebrate the gift that Deb is to me. For twelve and a half years she has been my trusted partner, confidant, coach and lover. Additionally she is the best mother I have ever met (sorry mom - I love you too). She perfectly complements my shortcomings and there is nobody else I would rather have by my side and on my team. With her next to me anything is possible.
She says I'm biased, I say I'm just truthful. Thanks for being you Deb. Happy Birthday!
Envisioning the future
While my personal technology biases do not typically allow me to think of cutting edge and Microsoft as synonymous, the following video which shows Microsoft's vision for computing in 2019 (yes only 10 years from now) is very thought provoking. The concepts shown are based on current research projects being worked on in their labs. It is only two minutes long and worth watching.
Question. If these visions become reality would it change how you connect and interact with your clients/consumers/patients/participants/congregants/etc..?
Question. If these visions become reality would it change how you connect and interact with your clients/consumers/patients/participants/congregants/etc..?
Simplicity - Part 4
Simplicity is a result of clarity and focus. If you don't have clarity and focus then you have no rationale for saying NO. Clarity and focus help you know what to say NO to and when to say it. If you want to be good at a few things you have to say NO to many things, and if you want to be great at one thing then you need to say NO to almost everything.
People will always want you to expand your services, add more features, or make more products. They will try to convince you it is the right thing for you to do by demonstrating the need or showing you it can be profitable. They will say something like...you do that so well why don't you try this...
Here's the thing, they aren't really trying to make you better, they are really trying to get you to meet their wants or needs. Unfortunately more often than not, if you continue to add features, products or programs, at some point you won't be great at what you started with, because you aren't focused on it anymore.
This is why a clear mission is so important, both personally and professionally, especially in the non-profit world. A clear mission allows you to say NO. If your mission is not clear enough and focused enough that it allows you to say NO, then do yourself a favor, rewrite it now.
You can't be everything to everyone. At least not with a high level of quality.
Simplicity - Part 1
Simplicity - Part 2
Simplicity - Part 3
People will always want you to expand your services, add more features, or make more products. They will try to convince you it is the right thing for you to do by demonstrating the need or showing you it can be profitable. They will say something like...you do that so well why don't you try this...
Here's the thing, they aren't really trying to make you better, they are really trying to get you to meet their wants or needs. Unfortunately more often than not, if you continue to add features, products or programs, at some point you won't be great at what you started with, because you aren't focused on it anymore.
This is why a clear mission is so important, both personally and professionally, especially in the non-profit world. A clear mission allows you to say NO. If your mission is not clear enough and focused enough that it allows you to say NO, then do yourself a favor, rewrite it now.
You can't be everything to everyone. At least not with a high level of quality.
Simplicity - Part 1
Simplicity - Part 2
Simplicity - Part 3
One Day Without Shoes
I was first introduced to TOMS Shoes at the Catalyst conference last fall. It is a neat organization with a great mission. Check them out. By doing nothing more than something you probably like to do anyway (buy stuff for yourself) you can help a child.
You can't manage change
I'm spending a lot of time right now working with a couple different non-profit organizations on restructuring projects (not Connor's House in case you were wondering, we are still working on structuring...too soon for restructuring). One of the people I am working with sent me this quote by Peter Drucker on managing change which I thought was worth sharing.
“One cannot manage change. One can only be ahead of it. In a period of upheavals, such as the one we are living in, change is the norm. To be sure, it is painful and risky, and above all it requires a great deal of very hard work. But unless it is seen as the task of the organization to lead change, the organization will not survive. In a period of rapid structural change, the only ones who survive are the change leaders. A change leader sees change as an opportunity. A change leader looks for change, knows how to find the right changes, and knows how to make them effective both outside the organization and inside it. To make the future is highly risky. It is less risky, however, than not to try to make it. A goodly proportion of those attempting to will surely not succeed. But predictably, no one else will.”
“One cannot manage change. One can only be ahead of it. In a period of upheavals, such as the one we are living in, change is the norm. To be sure, it is painful and risky, and above all it requires a great deal of very hard work. But unless it is seen as the task of the organization to lead change, the organization will not survive. In a period of rapid structural change, the only ones who survive are the change leaders. A change leader sees change as an opportunity. A change leader looks for change, knows how to find the right changes, and knows how to make them effective both outside the organization and inside it. To make the future is highly risky. It is less risky, however, than not to try to make it. A goodly proportion of those attempting to will surely not succeed. But predictably, no one else will.”
I wonder...
I wonder...what is God thinking about today (for those of you not familiar with the judeo-christian calendar today is the first night of passover which is also the night Jesus was betrayed and the day before he was crucified)?
I know what I think about around the anniversary of Connor's death. I replay the events in my mind over and over and over. Wondering. Questioning. Crying. The memories are so vivid. The emotions are so intense and raw. It feels like it happened yesterday.
I wonder...does God still replay the events of those fateful days, almost 2000 years ago, over and over in His mind? Does He still wonder, question and cry; wishing it could have all ended differently for His son?
I wonder...
I know what I think about around the anniversary of Connor's death. I replay the events in my mind over and over and over. Wondering. Questioning. Crying. The memories are so vivid. The emotions are so intense and raw. It feels like it happened yesterday.
I wonder...does God still replay the events of those fateful days, almost 2000 years ago, over and over in His mind? Does He still wonder, question and cry; wishing it could have all ended differently for His son?
I wonder...
Asking the right questions
The following is a real interchange that I witnessed this morning at breakfast:
If they only had cheese danish why in the world would she ask the customer what type of danish they wanted? Instead when the customer asks for a danish simply say: sure would cheese be OK?
If you want to keep your customers happy learn how to ask questions that make them feel like they are in control while steering them toward selections that you can accommodate.
Waitress: What can I get for you?I'm sure the waitress meant well but somebody needs to teach her how to ask questions that keep customers happy instead of questions that result in unmet expectations.
Customer 1: Do you have danish?
Waitress: Yes, what type would you like?
Customer 1: How about cheese?
Waitress: OK
Waitress: And what can I get for you (to the next person at the table)?
Customer 2: I would like a danish also.
Waitress: What type would you like?
Customer 2: Apple.
Waitress: I'm sorry we only have cheese danish today.
Customer 2: (a little quizzically) um, OK, cheese is fine.
If they only had cheese danish why in the world would she ask the customer what type of danish they wanted? Instead when the customer asks for a danish simply say: sure would cheese be OK?
If you want to keep your customers happy learn how to ask questions that make them feel like they are in control while steering them toward selections that you can accommodate.
The service you didn't know you needed
Even after working in the IT field for so many years I am typically a late adopter of new technology. Partly because I try to keep my life simple and I am not at all convinced that technology always helps with that. Also because over the years I have started using too many new technologies that have eventually been discontinued and then I have to find a replacement so I now wait to see who the survivors are going to be before jumping in. Well Twitter is one of those technologies. It seems like it is likely here to stay but I am still not convinced it is going to improve my life. The following is an interview from the Colbert Report last week with the co-founder of Twitter. It is hilarious and Colbert does a brilliant job of pointing out all the issues I have with Twitter.
Simplicity - Part 3
There are lots of different areas that the concepts of simplicity can be applied to: Organizational Design, Systems, Product Design, Architecture, Personal Life (including: finances, belongings and behaviors), etc..
For many years simplicity was out of vogue. For most of the past decade bigger was better and shiny and new were the rule. However over the past twelve months simplicity is making a comeback driven largely by the current economic crisis. Why? Because complexity is costly and inefficient so people are streamlining their lives both personally and professionally.
What are you doing to simplify?
Simplicity - Part 1
Simplicity - Part 2
For many years simplicity was out of vogue. For most of the past decade bigger was better and shiny and new were the rule. However over the past twelve months simplicity is making a comeback driven largely by the current economic crisis. Why? Because complexity is costly and inefficient so people are streamlining their lives both personally and professionally.
What are you doing to simplify?
Simplicity - Part 1
Simplicity - Part 2
I'll Make You An Offer You Can't Refuse
I recently finished I'll Make You An Offer You Can't Refuse by Micheal Franzese for the Thomas Nelson BRB project. What can I say, being from New Jersey how could I refuse the opportunity to review a business book written by an ex-mobster.
I actually listened to the book instead of reading it because it was published under the Nelsonfree imprint (and I spent six hours in the car last weekend). More on that here.
In I'll Make You An Offer, Franzese effectively relates extremely practical business and leadership lessons learned through his life in the mob, using engaging stories and cautionary tales, all without glorifying the life of crime he led. In fact, in contrast to all the get rich quick schemes that fill the business shelves today, Franzese was refreshingly straight forward about the consequences of taking shortcuts in business or life.
Unlike most business and leadership books on the best seller list there were no quick fixes offered or 10 step processes to follow. Instead Franzese focuses on the hard work and dedication required to prepare you for success. Rather than quoting Welch, Gates, Buffet, Jobs or any other modern day business titan, Franzese reaches much further back for his business and leadership wisdom.
Listening to Franzese compare and contrast Solomon with Machiavelli causes you to see these men in a different light and think outside the box regarding where you look for leadership lessons.
If you like to be entertained while you learn, I'll Make You An Offer You Can't Refuse is worth the read (or listen).
I actually listened to the book instead of reading it because it was published under the Nelsonfree imprint (and I spent six hours in the car last weekend). More on that here.
In I'll Make You An Offer, Franzese effectively relates extremely practical business and leadership lessons learned through his life in the mob, using engaging stories and cautionary tales, all without glorifying the life of crime he led. In fact, in contrast to all the get rich quick schemes that fill the business shelves today, Franzese was refreshingly straight forward about the consequences of taking shortcuts in business or life.
Unlike most business and leadership books on the best seller list there were no quick fixes offered or 10 step processes to follow. Instead Franzese focuses on the hard work and dedication required to prepare you for success. Rather than quoting Welch, Gates, Buffet, Jobs or any other modern day business titan, Franzese reaches much further back for his business and leadership wisdom.
Listening to Franzese compare and contrast Solomon with Machiavelli causes you to see these men in a different light and think outside the box regarding where you look for leadership lessons.
If you like to be entertained while you learn, I'll Make You An Offer You Can't Refuse is worth the read (or listen).
Little Details - Part 2
Little details are not just for hi-tech companies.
For two years my son Connor had a double lumen broviac catheter through which he received medication and IV nutrition. The two ends of the catheter were color coded blue and yellow to signify the size of each lumen. Over time Connor became VERY protective of his central line and gave each side a name. Thomas was the blue lumen and Ben the yellow. They were named after two of the trains in the Thomas the Tank Engine series.
On multiple occasions Connor needed his line replaced due to infection. Sometimes he required a temporary line to be placed to allow the infection to clear prior to the new broviac line being placed. One time, during the procedure to insert the temporary line the intensive care doctor, Dr. Chopra, recognized that the temporary line had blue and white ends instead of blue and yellow ends like his regular line. Having spent enough time getting to know Connor to understand that this would be a problem, Dr. Chopra took the time, while Connor was still under sedation, to wrap surgical tape around the white end and color it yellow so when Connor woke up he would have his Thomas and Ben. I cannot tell you how much that meant to a sick 8 year old boy and his parents. The Little Details make all the difference.
For two years my son Connor had a double lumen broviac catheter through which he received medication and IV nutrition. The two ends of the catheter were color coded blue and yellow to signify the size of each lumen. Over time Connor became VERY protective of his central line and gave each side a name. Thomas was the blue lumen and Ben the yellow. They were named after two of the trains in the Thomas the Tank Engine series.
On multiple occasions Connor needed his line replaced due to infection. Sometimes he required a temporary line to be placed to allow the infection to clear prior to the new broviac line being placed. One time, during the procedure to insert the temporary line the intensive care doctor, Dr. Chopra, recognized that the temporary line had blue and white ends instead of blue and yellow ends like his regular line. Having spent enough time getting to know Connor to understand that this would be a problem, Dr. Chopra took the time, while Connor was still under sedation, to wrap surgical tape around the white end and color it yellow so when Connor woke up he would have his Thomas and Ben. I cannot tell you how much that meant to a sick 8 year old boy and his parents. The Little Details make all the difference.
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