Today I sat down to have my morning coffee and a piece of toast spread with something I haven't had in 30 years- Nutella. When I was a little girl at Davis Thayer School in Franklin, MA I would bring fluffernutter sandwiches to school. What could be better? One day I met this little girl who was grinning from ear to ear and when she spoke she sounded a little different from all the other kids- like she came from somewhere far away. She asked me if we could trade sandwiches. She said that hers was wonderful- very very good- but she was just getting a little tired of having "chocolate" sandwiches every day! Can you imagine that? I couldn't believe it! First- how did I not know that these chocolate sandwiches existed and secondly- how could any kid not want a chocolate sandwich!! Needless to say I was more than happy to make the switch and from that day on we were friends. Even though I didn't share any of the same classes with her once we were in high school, we met up again one day on the train platform in Boston when she was going to school to be a pharmacist. It's funny because I had taken that path myself- I worked in pharmacy for a long time and then went into research working at the Farber. I was so saddened to learn that she had passed away so young. She was such a beautiful person- inside and out. She had the biggest smile of anyone I ever knew. ((((Za)))) Years have gone by but today I couldn't help but think of her while sitting here enjoying my "chocolate" sandwich. I decided to Google her name and found this site. I'm so glad that I did. Turns out that I just happen to know someone who needs this information right now. Thank you so much!

— Maureen Lepak, 6/24/2010

I am not yet 30 and expect to have many healthy years ahead of me, but my wife and I discussed the questions on the one slide anyway. I learned so much about her during this discussion, including that she does not want me to be her advocate in an end-of-life-situation. She would like one of her siblings who has an MD to make the difficult choices because he would understand both her needs and the medical situation. I want to make these decisions well in advance of an end-of-life situation. If I don’t, I may not have the opportunity to convey my wishes to my loved ones, and they might always wonder whether or not they chose the right course.

— Michael Westover, 11/19/2009

I had the opportunity to watch Alexandra announce the 'Engage with Grace: The One Slide Project' at the Health 2.0 Conference in 2008. Since then I have shared the One Slide at a number of presentations and have it as part of my standard slide presentation. I always relay a brief story about Alexandra and how the project got started. I then just give the audience time to read each of the questions and ask them to think about them and commit to sharing them with one other person. To learn more about why Alexandra's story personally touched me check out the post at my Health Care Law Blog (http://healthcarebloglaw.blogspot.com/2008/11/engage-with-grace.html). Robert L. Coffield

— Bob Coffield, 5/28/2009

April 16 is National Healthcare Decisions Day. It is an entire day designed to encourage action on this critically important topic. Please be sure you have your advance directive done by then or use that day to inspire you. For more information see: www.nationalhealthcaredecisionsday.org

— Anonymous, 3/13/2009

I can't stress strongly enough how important it is to make your wishes known regarding end-of-life directives. When my mother was dying of lung cancer, I was blessed in that I worked at a Long-Term Care facility as a geriatric nursing-assistant. The Social Worker on my floor was kind enough to provide me with a 'Five Wishes' document. I took it to my mom, and she and I discussed the fact that she wanted to die at home, that she wanted to be assured of pain management, that she wanted no 'extraordinary measures' taken, even the music she wanted played at her funeral. This led to other discussions (of personal and family issues) that may not have taken place otherwise. It brought her a great measure of peace in her final days, a sense of control and empowerment that most people are, unfortunately, denied during a terminal illness. It also offered the added blessing of relieving the family of most of the stress and guilt of trying to determine 'what Mom would want'. After Mom's passing, I ordered a case of The Five Wishes documents, and gave them to all of my family members. The rest were donated to the Senior Group at my church. I watched so many patients suffer needlessly while their families argued and fretted over their treatment plan, and I NEVER want my family (or myself!) in that position. My daughter will never have to wrestle with the decisions of my medical care or funeral wishes, and for that I am profoundly grateful.

— Patricia Ann Reinsfelder, 1/6/2009

Thank you for highlighting the importance of having these conversations with our loved ones. That is an important part of assuring that your final months go well. The next part is really understanding the limited benefit of many medical treatments for those in their final months of life. I worked for a hospice for 25 years and left to write a book to help nonmedical people to understand the futility of many treatments that people receive in their final months. Some of the treatments not only fail to help them medically improve but also may in fact hasten their dying and increase their physical suffering. Educating yourself about this is also essential in avoiding unnecessary suffering. I would also be happy to lend my support (in any area) on the clinical side of things.

— Betsy Murphy, 12/16/2008

I'm a physician in an ICU and I can't tell you how many times I've wished families had spoken about end of life, before the actual end of life. It's painful that many times loved ones are kept alive with no hope of returning to a meaningful quality of life, while families fight over what "mom" or "dad" would have wanted. Clinicians do the best they can (some admittedly, better than others) to ride the emotional roller coasters with families, but it's difficult to ignore the often needless suffering of their loved ones. The message you are delivering is critically important and I wholeheartedly applaud your efforts. I'd be happy to lend my support on the clinical side of things to answer any questions or serve as a resource as you see fit. Thank you again and I look forward to hearing from you.

— Richard Levrault DO, 12/10/2008

I found your site from a USA Today article earlier this week. Timely, as we were just discussing some of these issues with my in-laws over the Thanksgiving holiday. Thanks for all the info and resources here. Another resource that I found is Stephen Kiernan's site/book http://stephenpkiernan.com - if you haven't seen it, you might want to. This subject is hard for me, but finding such great support & info has been helpful.

— Wendy, 12/3/2008

Your story in the Boston Globe a day before Thanksgiving could not have come at a better time. I had decided to talk to my aging father about his wishes for the end of his life, and to do it as we were driving down to a family gathering where his brother would be. Introducing the topic with Za's story made it much easier. I did not second guess myself. I did not feel I was introducing the subject too soon. As it was he found it all very interesting and told my uncle that we had discussed important things like end of life care. My uncle told my Dad that he has already written his obituary, that he is not afraid of death - and the two of them sat and talked. It was very gratifying that my uncle could support me in having brought up the normally taboo topic. So today I wake with a clear conscience. The direction of my dad's care IS changing - as a boat slowly coming about. We will be ready. I am sending out advance gratitude that his passing - when it comes - will be easy. Now, I say to him, that is out of the way, let's go back to planning for the rest of your life. He is 91 years old.

— Martha Stewart, 11/30/2008

My husband died in 1995 at the age of 54 after an 18 month battle with Lou Gehrig's disease. While he mourned the gradual loss of his physical abilities over that time period, he also faced death with a sense of adventure and curiosity. A physics and philosophy major, patent lawyer and college professor, he was a partner with his doctors in trying to unravel the mysteries of his disease. He also prepared for his death by pulling together all of the threads of his life that had meaning - collecting his writings into a self published book for his friends and family , mending relationships, reaching out to old friends. And he focused on the practical aspects of facing death - putting his/our financial affairs in order, making wise decisions about end of life care (no feeding tube or ventilator), and even making funeral arrangements. What might have seemed morbid at the time actually brought us closer together and more than occasionally gave rise to love and laughter. There is something about sitting together in a funeral parlor looking at caskets and urns and making choices that had moments of high comedy. I made my funeral arrangements at the same time - opting for cremation in "the alternative minimum container - i.e. a cardboard box" which might have felt like a "cheap decision" if my children had made it after my death. Making all of these choices together brought us closer and gave a real sense of closure to his life. The gift to me of his death was to face my greatest fear which was of losing him and come through the other side. As a result, I lost my fear of dying and learned amazing lessons about how to live, lessons that have been tremendously valuable as I recently faced my own challenges with a cancer diagnosis. All of this is to say that having open, loving conversations about the end of life can be enormously healing and provide powerful life learning lessons. Since my husband's death I have been looking for others who understand and believe in the value of exploring end of life issues more intentionally and transparently and applaud the work you have started with Engage with Grace. As we baby boomers age, I think there is an opportunity to help redefine the end of life in the same way that our generation helped to redefine the birth experience in the late 1950's and 1960's. Thank you for your important work.

— Marion Kane, 11/29/2008

I am a part-time health care instructor at The University of Akron (in Ohio). Thank you for this website. I plan on sharing your project with my students, since one of our chapters is about long-term care. I will also add it as one of my "wish list" objectives for my students, including it with preventive wellness, having health insurance, having a power of attorney and living will, etc.

— Kristen, 11/28/2008

This is not my story. It's something I read today. The book is "The Alabama Student" by William Osler, a famed physician who lived from 1849 - 1919. The chapter is on John Keats, and it was a talk Osler delivered at Johns Hopkins Hospital on Octoberr 29, 1985. Keats died of T.B. in 1821 in Rome at age 25. He was attended by his friend, the artist John Severn. Osler writes: "Severn (Atlantic Monthly, April, 1863) has given a touching account of the last month of his friend's life. Realizing fully the hopelessness of his condition, like many a brave man in a similar plight, [Keats] wished to take his life. Severn states: 'In a little basket of medicine I had bought at Gravesend at his request there was a bottle of laudanum [tincture of opium], and this I afterwards found was destined by him "to close his mortal career", when no hope was left, and prevent a long lingering death, for my poor sake." Severn and Keats's doctor, Sir James Clark, did not comply with the poets entreaty and he died shortly thereafter. This is a touching anecdote that underscores how important "Engage with Grace" is.

— David Elpern, 11/27/2008

Hello, I would love to thank you for your vision. This is so incredible, and has found me at a time in my career, that I have wanted to scream to the world how important this conversation is. I have been a Hospice nurse for 10+ years, and knew there needed to be change before someone’s last days. So I sought out a career in Palliative care, in the hospital setting, in hopes to helping our patients voices be heard, while they still can. It has been a wonderful, privileged journey, and your engage with grace, is such an awesome stretch to more and more people. I too, sat at lunch with my 5 best girlfriends, and discussed these questions, and the Five Wishes. Being the ‘nurse’ friend, I explained that I am sure that if one of us is sick, the others will look to me for advice on what to do next. I told them if that was the case, I needed to know what THEY would wish for, not what I thought they would want, or what I would want. Having this conversation with them, with all of us together, was very enlightening. Some shared thoughts I would have never known. This led to a dinner party with the spouses, and filling out their Advanced Directives, and lots of tears, and conversation. I am sure, each of us will know what each other will want, in case they can not tell us. In the professional arena, in the last year, our hospital, actually, a very driven Chaplain, and Palliative care nurse, have attempted to change the norm. We have had mandatory in-services for nursing and respiratory staff on Advanced Directives, what they are, what they mean, etc. We use the words, “Wishes”, and the “Keepers of your wishes”. 1 year ago, Advanced directive were assessed, only 52% of the time on our hospitalized patients. After our efforts in this past year, with engagement from our administrators, we have 88% evidence of Advanced Directive assessment, and actually 58% of those assessed, actually are placed on the chart!!!! It has been incredible. We have a way to go to reach 100%, but could never have imagined how much of a difference we could have made. Our medical staff as well as 2 local Extended Care facilities have asked for the inservice to help them understand as well. Your Engage with Grace is exactly what we need to take this to a different level. I am so excited to share your site with anyone I can, and all at my organization. Maybe we can commit to sharing this slide in all of our Presentations in our hospital, then maybe even, the five hospitals in our region. Thank You so much for your time and ideas, and I will share with you in a few weeks what we have done with your ideas.

— Karla Shearer, 11/27/2008

For ten years, as teaching assistant for a doctor friend's course on Current Topics in Medicine, I helped students think about and discuss end-of-life decision making and write an advance directive. I gave my "significant other" the same materials the students used (articles, forms) and asked him to do the assignment too. It took him two years to execute a healthcare proxy form. Then I pushed him to tell me what he wanted me to do with the authority he was giving me to act for him if he couldn't make his wishes known, and he said, "If I can't read the New York Times, I don't want to live." Of course that wasn't good enough. I made him complete a checklist. He never wrote the paper the students had to write, but he did elaborate on the situations in which he would prefer to refuse or withdraw medical intervention. Four years ago, a couple of days before Thanksgiving, he had a stroke in his house on Nantucket island and lay, unconscious, for 26 hours before somebody found him on the kitchen floor and rushed him to Nantucket Cottage Hospital. I flew from Boston to Nantucket on Thanksgiving Day 2004 and sat at his bedside until he died the following day. The CAT scans showed such irreversible brain damage that he was unlikely ever to regain cognitive function, even if he emerged from the coma. Had he lived, I would have had to carry out his wishes and withdraw fluids and nutrition so that he could die in peace. He died before I had to make that decision, which would have been the hardest thing I had ever done in my life. As it is, it was important for us to have had the conversations we had about what we considered acceptable intervention and acceptable quality of life. Also, because we were not married, I would not automatically have had the right to be the go-to person at the hospital, had I not had the healthcare proxy form with his signature on it. Now that he's gone, my own healthcare proxy, naming him as the person to make medical decisions for me, is null and void. I wrote another one, giving my attorney the power to act on my behalf, but it is really only a temporary solution. There is nobody else in my life to whom I am close enough, and whom I trust enough to carry out my wishes. All I know is that I would not want to leave that power to anyone in my immediate family or to a doctor. Having a serious conversation about possible end-of-life situations (chronic and/or terminal illness, crippling accident, heart attack or stroke, extreme old age) and options for medical intervention is one of the most important things an adult can do. I'm not sure Thanksgiving is the right time to do it, though. Sometimes the person best able to act on your behalf is not your spouse or sibling or parent or child but a trusted friend or partner, whose personal choices and emotional involvement will not deflect him or her from doing what you want.

— Jacqueline, 11/26/2008

What a moving video presentation. How lucky Za was! I would like to say, that on question 1 there are actually 2 issues. One is "dying at home" and the other is without medical intervention. In the hospice world from which I have worked over the last 4 years, we don't refer to hospice as giving up or losing hope... what we are saying is that the direction of your care has changed. There will be no more aggressive medical intervention, however there will be medical management to ensure that there is no pain or symptoms thereof. That a person will be in physical, spiritual and psychological peace. That can take place anywhere the patient is.

— joan linsky, 11/26/2008