The PRAXIS Nexus The PRAXIS Nexus

5 Questions: Dr. David Atashroo

Posted on June 07, 2016   |   
19 Comments   |   
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Dr. David Atashroo

Dr. Atashroo is the co-founder and CEO of Copilots In Care, an organization dedicated to helping patients facing serious illnesses communicate their wishes and ensure that they receive the care they want. Read more about his work on the Copilots In Care website.

What do you think is the biggest misconception about end-of-life care?

That you don’t have options, so if you delay thinking about it, it won’t make a difference. So many don’t realize that there is a tremendous informational asymmetry between what healthcare providers know and what even experienced patients know. Reflecting on your wishes, sharing your preferences with family and friends, planning for your future – these things aren’t about the end, they are about maximizing joy and opening doors so that you can get the best care possible.

What do you think is the single most promising practice in this care right now?

The most promising practice for maximizing joy and minimizing suffering is the field of palliative care. Many patients unfortunately equate palliative care with hospice, but nothing could be further from the truth. The sad reality is that so few people realize they have this amazing benefit available to them until far too late. In this, they miss the opportunity to enjoy all the specialized care that palliative medicine has to offer.

If you had a magic wand, how would you improve how we address end-of-life issues?

Every person, when they feel strong, stable, and doing well, would have an open conversation with their family and friends about what is important to them and explore options for care. They would make sure everyone was on the same page and communicate their wishes verbally, and in a written plan, in the presence of all the loved ones who may be called upon to make a decision for them. They would understand what makes a good proxy, and equip one person with the honor of guiding their medical decision making when they are no longer able to.

What is one aspect of end-of-life issues you think is too often overlooked?

Creating an ACD (advanced care directive) is not enough. Sadly, even just having the conversation once with one loved one is not enough. It takes a team to make sure your wishes are honored and lighten the load when death approaches. Everyone who may be involved in your care at the end of life needs to hear your wishes from your lips and be on the same page. Then they need to hear it again and again as your health changes and your thoughts evolve. End of life planning is not a singular event. It, like life, unfolds wave by wave. So this conversation needs to be transformed into the never-ending story, one that is continually being written, and that is always a joy to go back to. If this is not the cadence, discord and uncertainty creep in, and strive will often arise when decisions need to be made.

What do you think will be your most important contribution to improving the lives of patients?

Creating space to listen to what is in their heart, before ever trying to “treat” them.

19 Comments



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  • Great article - as individuals we all have our own personal story and what a great way to validate our lives and experiences than sharing with others.
    I know from my own personal experience how important palliative care can be for both life goal setting and the more physical expertise for symptom management. thank you Dr. Atashroo.
    Reply
  • So true Deb, we all have our own personal story.

    As a medical professional I had seen far too many families stand at the bedside of a gravely ill loved one and say, "We have no idea what he would want us to in a situation like this."

    So I tried to get my dad to talk about it but he wouldn't think of it. This left my mom, my sister and I with some tough decisions to make when Dad became critically ill overnight, just days after Dad was happy and well and still working.

    Everybody -- everybody -- should have an advance directive, even if you're young and healthy. God forbid....you are a patient who can't speak for yourself, or a family member who is faced with starting or withdrawing life-sustaining treatment. But the reality is......these things happen. I saw it almost every day in my work as a respiratory therapist and I lived it twice.....first with the brief illness of my dad and years later the very sudden, shocking death of my mom.

    Please. Talk with your loved ones. Doing so might cause you to feel sad for a little while, but once you take care of things you can forget about it... and go on with your life!

    Jane.
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    • I'm curious as to what differences there may be between Pallative Care and Hospice Care if any.
      Reply
    • I have obtained the signature from my Pulmonologist concerning Advance Directive. Aside from not wanting family to see me with respirators neither do I want to bankrupt my family. Once you enter into artificial means it's very easy to do.
      Reply
    • Hi @jp3289,

      That is a great question. Palliative care is a type of healthcare that helps a person suffering from their disease or disorder. This can be utilized by anyone who has a serious illness. Hospice is a more for end-of-life care and comfort. Many people think of them as one and the same, but palliative care is not focused on end-of-life, but more about helping those who suffer find comfort with their disease through managing the stress and symptoms. I hope that helps clarify the difference, and would be happy to hear from Jane on any other thoughts that she has to the subject.
      Reply
    • JP2389- Great definition Jason-
      Palliative care is specifically you if you are in treatment to halt or cure your disease. Hospice is for when in everyone’s life there comes a time when medical care is no longer helpful.
      Palliative Care – a program that is managed by a focused health care team, that works with you and your family to help with your personal goal setting, symptom management and counseling. This program is designed to support you if you are in treatment to halt or cure your disease. The focus is to support both you and family in making care and treatment decisions and ensure you are most comfortable in all stages of your illness.

      Hospice - a program that is managed by a focused healthcare team that works with you and your family to provide comfort ensuring improved quality of life in the final months or weeks of your life. Plans of care are developed with you and your family, that are customized to your personal needs by a special team, that can include, your physicians, RNs, social workers, chaplains, counselors and volunteers. Most programs support families and loved ones with bereavement care following for a year following their loves’ on death. At any time you can leave hospice care to seek new or aggressive treatment.
      Hospice Care is available in your home, or if you live alone it can be available in a nursing home or a special hospice residence- a Hospice House.

      Reply
  • Thanks so much for these comments. I am always confused about advanced directives. I was under the impression that the process was an easy one and that templates were available online, but the process was still pretty confusing. How do people get started if they would like to pursue creating an advanced care plan?
    Reply
    • Your local hospital should have some basic forms for Advance Directives. In addition to these forms, they most likely have health care professionals on staff who can answer your questions and help you get started.
      Another option is to complete your Advance Directives through a local attorney.
      There are forms available for download online. Keep in mind that your state of residence my have guidelines and laws that differ from other states. So if you go online, make sure you are downloading the forms that are specifically for your state.
      Once forms are completed and include all necessary signatures, make sure that each person who signed them, in addition to your doctor, your local hospital, and your next of kin have copies.
      Reply
    • Thanks Jane -- this is super helpful information for me and I hope others will find it so.
      Reply
    • Kristen
      I checked online for my state for forms to download on Advance Directives and they are there. The option is also there to fill them out online. Thanks guys.
      Reply
    • I'm glad you found them, jp3289. I'm going to search for mine, as well.
      Reply
  • Dr. Atashroo and I have had several conversation how about how difficult this can be for any healthcare provider to start this topic. As a case managers for many years, I always had that uneasy feeling about "going there". It wasn't until it hit home with my mom, who asked to have the conversation that I realized how important it was to her. She made all her own decisions and as her family we supported all her wishes.

    I would encourage everyone to check out this website- it was sponsored by the Institute of Healthcare Improvement (IHI) - those conversations are critical. http://theconversationproject.org/

    Did you know that 82% of people say it is critical to put their wishes into writing, but only 23 % do?

    Here are a couple of more sites that can help with the Advance Directive process- remember each state is different.

    https://www.eldercare.gov/

    http://www.nhpco.org/

    Your local hospital is also a great place to check with.

    Reply
    • Thank you, Deb. Great information, and the 82%...23% fact is very interesting!

      No doubt, it's hard to sit down and talk about "end-of-life" decisions, but the alternative - NOT doing it - can be far worse.

      As individuals living with COPD, you know that you may not have all the control over your life that you once had. You may be limited in what you do, where you go, and how long you stay. You may need help with simple tasks such as preparing food, shopping, or getting dressed.

      Having an Advance Directive in place gives you control over your own care if you are ever unable to speak for yourself. Not having an Advance Directive turns over those decisions to others, usually at a time of great stress and sadness.


      Reply
  • I really appreciate the discussion. The difference between palliative care and hospice is clearer, there are still some details about palliative care that are very fuzzy. According to the discussion so far, palliative care could occur for most of us at almost any point in our lives. The only requirement is that we have some illness or condition that we're either trying to get over or cure. Even though my COPD is currently stable and I'm well, I still have a chronic condition I'm living with, so I think that qualifies me for palliative care. Since there isn't a cure at the moment, we'll just let that piece go. Am I getting palliative care right now? By the definitions given so far, I think the answer is yes. I have a team that I manage and keep organized, I see each of them regularly and insist that they communicate with each other, my goal is to continue to do everything I'm currently doing and I'm getting all the treatments necessary to make that happen. No one has ever considered this to be palliative care, and yet by the definitions given here, it is.

    I think a lot of patients are very confused about several things: who gives palliative care; how does a patient access it; who decides if it's palliative care or not and who pays for it? Nothing in the discussion thus far really addresses those questions or gives a real life example of palliative care and how it differs from hospice.




    Reply
    • Hi Jean, hope you are well. I apologize if I have confused you- so I have included some extra links for you to read. I advise patients and families to read as much as they can, speak to others, and always have this discussion with your MD and then he/she will share the options for you and your family to talk about.
      I am including a couple of links for you. Palliative care is a program, and is ordered by your doctor. You are right it can happen at any time, when your MD feels it is appropriate for you. As I shared a multidisciplinary team focuses on goal setting, symptom management and counseling with you and your family if you wish. There are specialists that are just focused on Palliative care as well.
      You must be in treatment to halt or cure a disease.
      This is a conversation for you to have with your MD. He/she might feel you are getting the same care that a more formal Palliative program can do- you will have to ask him/her. Some insurances cover the program and others do not, and the billing for the services is different.

      https://www.cms.gov/Medicare-Medicaid-Coordination/Fraud-Prevention/Medicaid-Integrity-Education/Downloads/infograph-PalliativeCare-[June-2015].pdf

      http://www.nhpco.org/palliative-care-4

      Hospice is when there is no treatment available to halt or cure a disease or you decide to stop treatment - it is for comfort care and is also a program led by a multidisciplinary team and ordered by your MD. Your MD decides when it is appropriate.
      It is for terminal care and is for a period of 6 months or less.

      Hospice care can be administered in the home, a SNF, and Hospice House, it is also billed in a different manner and is a benefit of some insurances, not all.

      https://www.medicare.gov/what-medicare-covers/part-a/how-hospice-works.html


      Reply
  • Deb,

    Thank you so much for explaining to me the differences between Pallative Care and Hospice Care.
    Reply
  • Deb, thanks for the clarification. I don't mean to be picky, but your statement that "You must be in treatment to halt or cure a disease" would, by definition, mean that COPD would not be appropriate for palliative care, because we can neither halt it nor cure it at this point. I can't believe that's the case, and I'm sure it's not. I'm equally sure that if Medicare pays for palliative care, there's both a definition and a code, and it might be helpful to know what those are. Not trying to be a pill, believe me!

    I think I have a pretty good "look and feel" definition of palliative care, but because health care is made up of bureaucracies I'm equally certain there is a very specific definition that docs have to use. It would just be good to know what that is.
    Reply
    • Deb, my apologies, I looked at the link you gave for palliative care, and it's on a CMS page and is about as definitive as a mud puddle. The difference between palliative care and hospice on that page is pretty fuzzy, so even CMS has a "look and feel" definition! I do think the intent is pretty clear, even if the details are fuzzy, so I withdraw the above! Good discussion and I hope people read it.
      Reply
    • Jean, I found this site that has the most detailed info about palliative care:
      https://getpalliativecare.org/
      Be sure to read each section.

      I have searched for 2 years to understand what they can do for the COPD patient specifically without success. For those who already have addressed the issues of advanced directives, know how to handle anxiety (PLB), etc., have good communication with their pulmonologists and PCP etc., there might not be much more that palliative care can provide. For those still active enough to mobile outside the home, I'm not sure when would be an appropriate time to call them. Most are associated with Hospice programs and they admit that COPD is not on their radar much - focus is high on cancer.

      They visited me during one of my hospital visits but they did not do outpatient, I would have to have my PCP find me a PC doctor. When I stated that I was not into a touchy-feely program, I was told that this program would not benefit me! Currently, my PCP manages my opoid for dyspnea and my pulmonologist monitors my lungs. So far, so good for me but I admit I am probably the exception.

      I'm sure there are many COPD patients that would benefit from their help as there are sooooo many that struggle with addressing advance directives, some issues related to their medications, anxiety.
      Reply

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