SHARE YOUR STORIES

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 – 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, 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, 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, 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, 11/27/2008

I shared this slide on my blog.  One thing that’s missing from this message is a discussion of assisted suicide and euthanasia. One my relatives wishes were to “give me a pill,” when there was no hope of survival, so that they wouldn’t have to go through a long and painful death. I didn’t happen. There was no pill. We had to stand by helplessly as they starved to death. It was painful for everyone. It’s inhumane. It’s time to make assisted suicide and euthanasia legal. What is your state doing about it?

-Steve, 11/26/2008

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 Zia 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, 11/26/2008