20 Comments

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  Steve Smith: Hi everyone. I am just joining the conversation and am impressed with what has been shared to date. It is a true honor to be among such as esteemed and dynamic group of thought leaders.
  
  Rather than creating another "top 10" list that repeats what has already been so elloquently stated, I will simply add that I think within the healthcare and medical community, we have not yet successfully engaged and coalesced around end of life care issues. This is true at both the local and national level.
  
  To date, there have been some terrific campaigns, projects, consensus documents, published reports, research and conferences -- but we still lack a national strategy and resources to ensure we are all heading in the same direction and making progress as we go.
  
  Given the magnitude of the issues that surface near the end of life, it is important that we have a concentrated and coordinated strategy and response -- similar to what is now happening in the Alzheimer community -- that includes government, voluntary health associations, academic institutions, medical societies and other organizations.
  
  My fear is not that we won't generate enough interest -- it is that once all parties have "awakened" we will not have a plan to ensure we effectively work together and are all on the same page. That could result in competition, confusion and worst of all, complacency.
  
  I look forward to further discussions "virtually" and at TEDMED 2013!

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  Jan Jones: My point of view comes from the perspectives I’ve gained through my years as a hospice CEO. In hospice, we focus on quality of life. Understanding that death is a natural process and having the hope to face it with comfort, peace, and dignity is the first step in resolving our issues with death.
  There is still a hesitation to focus on quality of life vs. continuing to take a curative path, even though that path may no longer be feasible or even desired.
  It's natural to many of us to avoid talking about end of life. Many in the medical community tell us they don’t want their patients to lose hope, or to give up. We see families struggle amongst themselves; where the terminal individual is seeking something beyond the fight yet their loved ones push them to keep fighting for a cure.
  All of us want to die peacefully, but we cannot do it alone. We must, as a society of individuals, caregivers, and medical professionals, begin to think differently.
  It’s reframing the concept of hope so we can find hope beyond the cure. When life expectancy can no longer be measured in years, when the real need is no longer to aggressively treat the disease or continue to seek a cure but to find comfort, regain quality of life and preserve dignity. Then we can find that hope can live beyond the cure.
  We should all begin to share our thoughts about quality of life. We should share what in life is important to us and consider if we’d choose quality over quantity of life. We must view having a good death as important as having a good life.
  

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  Victoria Seng: Palliative care can be given and received at any age and at any stage of serious illness or chronic disease. We can move our efforts "upstream" to allow patients and their families more time to benefit by coordinating care from the time of diagnosis through the use of multidisciplinary palliative care teams that address the patient's needs beyond the treatment of disease. This results in care in which patients and their families are more satisfied, and extends survival time while possibly curbing costs due to unnecessary treatments that do not coincide with the patient's wishes.

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  Jan Jones: My point of view comes from the perspectives I’ve gained through my years as a hospice CEO. In hospice, we focus on quality of life. Understanding that death is a natural process and having the hope to face it with comfort, peace, and dignity is the first step in resolving our issues with death.
  
  There is still a hesitation to focus on quality of life vs. continuing to take a curative path, even though that path may no longer be feasible or even desired.
  
  It's natural to many of us to avoid talking about end of life. Many in the medical community tells us they don’t want their patients to lose hope, or to give up. We see families struggle amongst themselves; where the terminal individual is seeking something beyond the fight yet their loved ones push them to keep fighting for a cure.
  
  All of us want to die peacefully, but we cannot do it alone. We must, as a society of individuals, caregivers, and medical professionals, begin to think differently.
  
  It’s reframing the concept of hope so we can find hope beyond the cure. When life expectancy can no longer be measured in years, when the real need is no longer to aggressively treat the disease or continue to seek a cure but to find comfort, regain quality of life and preserve dignity. Then we can find that hope can live beyond the cure.
  
  We should all begin to share our thoughts about quality of life. We should share what in life is important to us and consider if we’d choose quality over quantity of life. We must view having a good death as important as having a good life.
  

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  Lizzy Miles: For some patients, their goal is truly to stay alive. I have to respect that. For other patients, though, they do not realize that their goals are inconsistent with their instructions. For example, if they say they do not ever want to go back to the hospital, but are still a full code, I might gently ask which is more important to them. Sometimes the patient will have a living will, but the family gives instructions that contradict what the living will might say. I will ask the family if the patient had changed their mind. Sometimes the 'do everything' mentality seems to be an automatic response, rather than an informed decision. There are ways to compassionately question choices to ensure they are deliberate.

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  Lizzy Miles: I am really jealous of the alternative medicine and free room and board that is offered to hospice patients in Bangkok. http://www.bangkokpost.com/lifestyle/family/334292/a-prayer-for-the-dying

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  TEDMED Moderator: Don't miss this powerful story on the TEDMED blog: A nurse writes of tough choices about withdrawing care in the ICU. http://blog.tedmed.com/?p=2716

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  TEDMED Moderator: An outstanding op-ed in The New York Times by a geriatrician illustrates the tough choices we're discussing: http://www.nytimes.com/2013/02/03/opinion/sunday/weighing-the-end-of-life.html?src=me&ref=general&_r=0
  
  Perhaps there should be third-party mediators, unbiased observers who could look into a situation and offer suggestions free of guilt or fear.

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    Diane Lindquist: In a hospital setting, this "unbiased consultation" should occur through the institutional bioethics committee. Nearly every hospital has one at least in name; however, not all function well; not all are well publicized to patients, families and caregivers, and even when the first two occur, not all are trusted by caregivers and patients.
    
    One barrier to effective bioethics consultations is common in medicine: it's not a reimbursed service under any insurance scheme. The committee consists of hospital physicians, nurses, social workers, pastoral care staff, lawyers and sometimes community members who volunteer their time. In addition, any staff member who requests a consult necessarily discovers they require staff time to provide information, attend meetings, and participate. Given the demands on staff time to provide care, document it for billing and quality purposes, and participate in other mandatory tasks, it may not happen.
    
    Second, many committees consist of well meaning and well regarded persons who simply chat about the facts, consider what they'd like done if it were their family member or themselves, and then pass those comments on to the staff requesting the consult. This certainly serves some purpose; if nothing else, the staff member requesting the consult will feel supported. But administering the bioethics function in a well organized fashion, based on the guidelines of the American Society for Bioethics and Humanities, and including regular education and training of members, produces a much more rigorous, useful, sensitive and effective consult.
    
    
    
    Finally, there typically is no such service for community practitioners whose patients are not in the hospital.
    
    Even when bioethics consults are available and done well, the issues will never be as simple a task as the vet's formula of "50% good days", described in this very insightful NYT article, but it would provide the support and objective advice many patients, family members and caregivers need at this critical time.
    
    

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  Lawrence Sheraton: From a social perspective it is hard to recognize your loved one is at "the end of their life"... and dying; which is a process of failure. Furthermore, it is difficult to accept that their body may keep going after they would prefer. Allowing someone to die with peace and dignity is a hope we all have but we largely fail to allow for this with people; we are much kinder to our pets.
  
  The medical issues have to do with rules created to protect patients and medical professionals that leaves both constrained and ends up harming both. If the intention is to protect people, yet we harm them in the process, we should change the rules or disregard them where obeying them is counter to their intent.
  
  If the family and the doctor are in agreement that a person is "at the end of their life" they should not force their body to fail "on its own", they should actively bring that body to a quick end.
  
  It is easy to talk about this theoretically but I feel people who have not witness a person at the end of their life and dying should be disqualified from the conversation as their ignorance disqualifies them from understanding the impacts of their theories and rules.
  
  I witness my grandfather's passing and while it was relatively quick - a few days, followed by several hours after aggressive drug "treatment" until his body finally quit - it was torture for me, my family, and especially for my grandmother. Heavily drugged, my grandfather may not have felt everything he was enduring but their is little way for us to know. The process of "letting the body fail" allows the doctors to avoid "killing the patient" technically, administering pain medicine may absolve them of torturing them - even though extending this process unnecessarily is a type of torture; both to the patient and their loved ones. I suspect it is torture to the nurses who are present to administer the doctors orders as well.
  
  I recently watched my dog get put down. He had cancer and was given 6-months to live almost 2.5-years earlier. He stopped eating 3-days prior to our decision to "put him down" and he could barely walk. He managed to walk into the room where he finally died. The Vet injected the dog with a syringe of pink fluid. The dog raised his head, briefly seeming quite alert, then dropped it and was dead. The process took less than a minute. The dog died with grace and dignity.
  
  I wish we could have offered the same solace to my grandfather who I loved with all of my heart. Technology is not holding us back, our rules are, and they need to be changed.

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• 

  Lawrence Sheraton: From a social perspective it is hard to recognize your loved one is at "the end of their life"... and dying (which is often a process of failure). Furthermore, it is difficult to accept that their body may keep going after they would prefer. Allowing someone to die with peace and dignity is a hope we all have but we largely fail to allow for this with people; we are much kinder to our pets.
  
  The medical issues have to do with rules created to protect patients and medical professionals that leaves both constrained and ends up harming both. If the intention is to protect people, yet we harm them in the process, we should change the rules or disregard them where obeying them is counter to their intent.
  
  If the family and the doctor are in agreement that a person is "at the end of their life" they should not force their body to fail "on its own", they should actively bring that body to a quick end.
  
  It is easy to talk about this theoretically but I feel people who have not witness a person at the end of their life and dying should be disqualified from the conversation as their ignorance disqualifies them from understanding the impacts of their theories and rules.
  
  I witness my grandfather's passing and while it was relatively quick - a few days, followed by several hours after aggressive drug "treatment" until his body finally quit - it was torture for me, my family, and especially for my grandmother. Heavily drugged, my grandfather may not have felt everything he was enduring but their is little way for us to know. The process of "letting the body fail" allows the doctors to avoid "killing the patient" technically, administering pain medicine may absolve them of torturing them - even though extending this process unnecessarily is a type of torture; both to the patient and their loved ones. I suspect it is torture to the nurses who are present to administer the doctors orders as well.
  
  I recently watched my dog get put down. He had cancer and was given 6-months to live almost 2.5-years earlier. He stopped eating 3-days prior to our decision to "put him down" and he could barely walk. He managed to walk into the room where he finally died. The Vet injected the dog with a syringe of pink fluid. The dog raised his head, briefly seeming quite alert, then dropped it and was dead. The process took less than a minute. The dog died with grace and dignity.
  
  I wish we could have offered the same solace to my grandfather who I loved with all of my heart. Technology is not holding us back, our rules are, and they need to be changed.
  

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