SHARE YOUR STORIES

My mother decided not to receive the care that had a small chance of prolonging her life but would also have left her with irreversible consequences and a shadow of her former self. She asked me to help her have a “good death.” Our family and her doctors all came down on the right-hand side of the “One Slide” continuum, wanting her to try anything to live. She didn’t have a valid advance care directive, but luckily she was still lucid and able to sign all the papers. We all knew what she wanted, but it was still difficult to let her go. I am still thankful that I helped her, but also that I was not left in a position to make the decision for her. Still, the guilt and pressure from our live-at-any-cost society haunted me enough to write a novel about a family in the same situation, Finding Frances. My husband and I have completed our advance care directives through www.projectgrace.org, another organization that helps people legally articulate their needs and desires for end-of-life care. We do not want any of our children to be burdened by having to choose on our behalf. We all exercise our freedom of choice in living, why don’t we take responsibility for our choice at the time of our ultimate passage? Thank you for bringing this “One Slide” to the open for discussion.

-Janice, 7/29/2010

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, 6/24/2010

After seeing the video and reading the story titled Engage With Grace I see myself eventually going in that direction as will most of us. I have been very fortunate in my 81 years of active life ,even though being diabetic since the age of 15 , I have been able to accomplish most of my goals. I owned and operated my own drug store on Payne Avenue, I volunteered for both of Norm Coleman’s senate races and have had a total 85 letters published in various newspapers . There are also events that I am not proud of as I am at this time engaged in my fourth divorce. More on that to follow. I feel that I am still capable but I have turned over all of my life decisions to my four children, Del, Jane, Mary and Barbara. and we have discussed living will and end of life care. I have full trust in my committee of four and I know they know better than I what is best for me. In late December they had real concerns about my health and safety so they removed me from my home and then to the emergency department at Regions Hospital as a vulnerable adult. They then found it best for me to file for divorce and live in an assisted living apartment in Maplewood. I thank God for them.

-Alan, 2/10/2010

My mother died at the early age of 59 from liver cancer. It was quick – diagnosed in October and she was gone two days after thanksgiving 2008 – never left any wishes or instructions – they gave her morphine so she never really said goodbye – hard to get over because there were no last anythings

-Anonymous, 1/16/2010

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, 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.

-Bob, 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, 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, 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 DO, 12/10/2008