This week the Alzheimer's Association released a report stating that 1 in 3 seniors dies with Alzheimer's disease or another type of demetia, a staggering statistic that has the potential to change the way we think about end-of-life planning.

Though dementia can cause death, Alzheimer's and other forms of dementia can also add to a rapid decline in physical (not just mental) health, compounding and intesifying existing health conditions such as heart disease, kidney disease, cancer, and other health problems.

There are currently 5.2 million Americans living with Alzheimer's disease or another form of dementia; by 2050, that number is estimated to increase to 13.8 million people. So what can we do to prepare ourselves for end-of-life, given this new information?

1. Talk to your family about your end-of-life wishes. By communicating with your family about how you want to be treated at the end of your life and what your priorities are (comfort, longevity, staying in your home, etc.), your family can feel more comfortable making care decisions on your behalf when the time comes.

2. Create an advance directive. By putting your health care wishes in writing in the form of a living will, you can save your family the stress of trying to determine what you would have wanted. By naming a health care power of attorney, you can choose someone to make decisions on your behalf for a time when you may not be able to speak for yourself or make decisions for yourself. By both creating a living will and naming a health care power of attorney you can give your family the legal tools to take care of you the way you want. To find your state's advance directive forms, use our list of State-by-State Advance Directive Forms.

3. Share your decisions with your doctors. Once you have an idea of the type of medical care you'd like, sit down with your doctors to let them know about the decisions you've made. You may want to give them copies of your advance directive, let them know who your health care power of attorney is, and discuss the reasons behind your choices. By communicating your decisions with your doctors, you can be sure that the people managing your care know the choices you've made and will be able to work with your family to follow your wishes.

via Yahoo! News

One of the first things my mother did when she was diagnosed with pancreatic cancer was contact an estate attorney. She was always good at planning ahead, and she treated death no differently. On came a slew of paperwork, an advance health care directive, a living will, and executor and power of attorney appointments. My mother selected a funeral home, the cemetery and her own gravesite next to my father’s. The fact that she had done all this end-of-life prep didn’t make burying my mother any easier. But her planning made it possible for me to carry out her wishes, and that did bring me comfort.

There’s something called an ethical will that’s designed to pass on guiding principles, values and hopes for a family’s future. My mother never formally assembled an ethical will, but growing up in a household where my mother was always imparting a lesson—from compassion for others to table manners to how to cook asparagus—my mother’s ethical will (which was really more like an encyclopedia) had been ingrained in me. 

The most valuable lesson from my mother’s ethical encyclopedia is her insistence that I trust myself. She taught me to trust myself during times of indecision and to go against the grain of a group decision if my gut was telling me otherwise. “Always trust your feelings,” she’d say. This guiding principle has helped me find my way through several big financial decisions, professional challenges, and conflicts with friends. Of course I still struggle in moments of doubt, but I have my mother’s voice and faith urging me to follow her advice…which is to follow my own advice, and that gives me strength.

I miss my mom a lot, but I’ve been able to move forward without too much grief. I’m convinced that the main reason for this is because of the legacy of values and teachings my mother passed on to me. I don’t get paralyzed by obstacles (big or small) because I’m wondering what my mother would do—I know what she would do and how she would advise me. Her opinions on things that have transpired since her death have always been, and continue to be, crystal clear to me. 

I believe that the lessons my mother taught me were ways for her to prepare me for life without her. As grateful as I am for her fastidious attention to the administrative side of her end-of-life planning, it’s her ethical encyclopedia that is most valuable to me. She taught me that I would be okay without her and that I can be my own sounding board, my own advisor and my own moral compass. And that’s something that will extend her life and lessons far into my future.

In Issue 11 of The Magazine (a subscription-based online and iPhone/iPad app that features fascinating short articles on a range of often-tech-related topics), Jane Hodges writes about the death of her father. The essay is a moving portrait of her father and of her experience after his death, as she threw away his things. But what struck me as most profound in the piece was Hodges' description of her father's quality of life in the months before he died, and his isolation and withering sense of self that she believes ultimately caused his death. Though her father suffered from chronic heart problems and died of a heart attack, "in this daughter’s heart," she writes, "he died because his final freedom—the freedom to use technology and the identity he got from it—was abruptly struck from his life."

"Up until the hospitalization that put him into rehab," Hodges writes, "my father had succeeded in ignoring his own physical decline because he still had a life of the mind, thanks largely to technology." Though his physical health was dwindling, and he could no longer engage in many of the physical the activities that had brought him real pleasure throughout his life, Hodges' father was able to stay actively connected to the world. Though his body was failing him, his mind was not, and he was able to keep his mind and his self agile, engaged, and well fed.

But the rehab facility where he spent his last weeks did not allow laptops and had no wireless Internet access, anyway. "Without the distractions of laptop and log on, he saw how narrow the tunnel of his life had become." Her father was rarely able to leave the rehab facility because of his fragile health. His isolation from the world was at once physical and mental.

It was, physically, a heart attack that killed Jane Hodges' father. But in a more emotionally minded reality, we can understand his death as the death of his sense of self, with his body merely following. His independence was gone, his access to the things he loved had been taken from him, and he was confined to a space that was not his own. On top of these factors, he was physically unwell. How would any person—sick or well—feel in a situation like this?

In my mind, the question that Hodges is raising is: what do we want end-of-life to look like? When we approach death, what kind of life do we want to be leading? The issues of where we want to be, how we want to be treated, who we want to be with, and what we want to be doing in our final time are not to be taken lightly. Though we will all someday die, and though the cause will ultimately be physical, the quality of our mental, emotional, psychological, and spiritual lives should not be discounted. These are, in the end, the things that make us who we are and give us reason to live.

Last month we brought you a story via BoingBoing that asked if doctors die differently than the rest of us. (The answer, in a nutshell, was yes: doctors do die differently, often with much fewer end-of-life medical treatments.) The question raises lots of issues—specifically, what do doctors know about dying that we don't?

Radiolab, the brilliant, curious, insightful radio show and podcast produced by WNYC in New York, talked to Dr. Ken Murray (who we spoke about in our previous post on this topic). Dr. Murray lays out the reasons why doctors overwhelmingly choose NOT to be resuscitated if their breathing or heart should stop, NOT to receive ventilation (machine breathing) or dialysis, NOT to receive surgery or invasive fact, why doctors overwhelmingly choose NOT to receive almost all life-support treatments at the end of life. One thing the doctors in the study overwhelmingly DO want? Pain management.

The piece offers insight into the treatments doctors want least, and why there's such a huge chasm between what doctors want and what patients want. Looking that the effects that CPR has on terminally ill patients, the show cites evidence that CPR is ineffective as a means of restoring a patient to full health. The producer of the show looks at a study that examines the success rate of CPR on TV medical dramas ("ER," "Chicago Hope," "Rescue 911") versus the reality of the efficacy of CPR on terminal patients. On television, nearly 75% of patients who receive CPR have a full recovery; in real life, the number is closer to 8%.

Though there's not yet a full transcript of the piece available online yet, I'd encourage you to take 20 minutes to listen to the podcast here. Whatever end-of-life medical decisions you choose, Radiolab offers an interesting perspective to consider. And be sure to check out the comments; there are lots of people who disagree with the piece, who have fascinating and worthwhile perspectives to offer, as well.

via Radiolab

Today's blog post is by our Editorial Intern, Ariana Dindiyal. We're so happy to have her on the Everplans team, and look forward to more blog posts from her in the coming weeks.

Hallmark, the largest distributor of greeting cards, was recently faced with a unique and compelling request from thousands of petitioners: greeting cards for the dying.

Regina Holliday, whose husband died of cancer, discovered the need for such a product after experiencing hospice while her husband was dying. She and her husband received many inappropriate cards, such as cards wishing him a speedy recovery. But Regina and her husband both knew that he was going to die. There were no cards for people in their situation.

Regina began a Twitter campaign along with a petition on, where she requested that Hallmark create hospice cards and add them to their grand selection. The petition has so far gained 3400 supporters. Regina’s story has been covered by Forbes and ABC News.

Hallmark responded to Regina’s campaign with acquiescence in a post on their website, and they have reorganized their selection to make the 100 cards for “tough times” more readily available in stores.

Thanks to Regina’s efforts, it is easier for people to send more appropriate cards to family members and friends facing death. We know that talking about and confronting death is hard, but Regina’s work here has taken a small step towards opening difficult conversations. We greatly admire her for that.

The folks over at iMortuary put together this Valentine's Day infographic, featuring some truly odd facts and stories of love and death. Happy Valentine's Day!

Loved 2 Death

In cities across the country (and the world), curious people of all ages and backgrounds are gathering regularly to share cookies, drink coffee, and talk about death. Known as "death cafes," these gatherings are intended to offer a forum for people to discuss a topic that—as we well know—most of us have trouble talking about.

According to the Death Cafe website, death cafes are usually organized and led by a person with professional (and, often, personal) experience with death, such as a social worker, hospice worker, or grief counselor. Writer and thanatologist (an expert in the study of dying, death, and grief) Lizzy Miles is the organizer of death cafes in Columbus, OH. "The goal is to raise death awareness with the view of helping people make the most of their lives," she says. "A lot of people who come are just trying to figure it out...They want to figure out what death—and life—should be all about." Conversations often cover a range of topics, from questions about the afterlife to discussions of advance directives to ideas about communicating with the dead.

To find a death cafe in your area, you can visit the Death Cafe website. The first-ever New York death cafe will be held on February 20, 2013.

via Huffington Post

A Matter of Life and Death

As an only child with a single parent, I was always scared to death of losing my mother. Life without her was terrifying and unimaginable. As a child and a young adult, I pushed this fear to the far back corners of my mind and tried to avoid ever thinking about it.

And then, three years ago, I was forced to confront my greatest fear. My mother was diagnosed with terminal cancer and died in January of 2010, leaving me a 28-year-old nuclear family of one.

Grief is a slow, strength-zapping, never-ending, emotional roller coaster that plunges you down when you least expect it and then propels you up, making you feel guilty for it. My grief, however, was nothing compared to the weight of taking on my mother’s end-of-life care.

Before my mom’s diagnosis, I knew nothing about hospice, palliative care, estate planning, wills or anything else related to death. Suddenly and without warning, I was unavoidably responsible for some really serious stuff. Insurance claims, two mortgages, at-home health care, financial planning, arranging my mother’s funeral and selling the home I grew up in (just to name a few from a very long list). To say that I was overwhelmed is a gigantic understatement.

They don’t teach you how to deal with this kind of stuff in college or in graduate school or even on the Internet, as I soon discovered. I blindly navigated my way through each intimidating task, growing more and more frustrated by the thing that no one wants to talk about but everyone has to deal with: death.

The inevitability of death—our own deaths and the deaths of those we love—is a fact of life. We can fear it, ignore it, or look the other way, but the fact remains that death touches all of us. I know this too well, and I know that just because we don’t want to talk about death, it doesn’t mean we won’t have to deal it at some point. This is why, when I learned of Everplans, I jumped at the opportunity to get involved. Yes! A place where people aren’t shy to talk about death!

As a team, we strive to deliver straightforward, valuable information about planning for the future, protecting your loved ones and assets, and managing everything life throws at you after a death.

The conversation will continue with my regular column, "A Matter of Life and Death." Every few weeks, I’ll check in to share personal stories, advice, the good, the bad, and sometimes surprisingly funny stuff related to end-of-life planning and death. The more we talk, the more we can help make death a less daunting, more controllable fact of life. I know that I for one could’ve really used that conversation three years ago.

‘Til next time,

Mark Dimor founded The BioContinuum Group in 1993 after 15 years in healthcare advertising, communications, and medical education. Mark works to identify practical strategies for changing patient and practitioner behavior and improving patient care, and to implement those strategies using education and social media. In addition, he was his wife's primary caregiver as she fought cancer for three years and ultimately passed away. Which is to say, he understands the issues that Everplans is addressing both professionally and personally.

Yesterday on his blog, Mark wrote an incredibly flattering piece about Everplans. In the piece, he discusses Everplans' role, as he sees it, in opening the channels for conversation around tough end-of-life issues and supporting patients, caregivers, and families as they navigate these complicated areas. We're re-publishing the piece here today. Visit The BioContinuum Group's blog for more information and opinions on these topics, and follow Mark on Twitter @MarksPhone.

Those who follow me know my areas of interest. They revolve around a somewhat narrow constellation of topics. One area is adult learning and how it works to drive an educational strategy for patients and HCP (healthcare providers). Another area is social media and how we must think goals and strategy when we want to apply social media to solve a communications, education, marketing, or brand problem. Finally there is the topic of hospice and palliative medicine (HPM) and how important that service is for both patient and caregiver.

One organization that’s also looking at the practical aspects of HPM and EOL is a company I was recently introduced to called Everplans. Everplans is a website that addresses, in a new and practical way, the topics of end-of-life and death. (Yup: yet another bummer post by me.) But I must say that after having faced these issues with Donna’s passing 18 months ago, and now in the middle of organizing my own life, this website comes as a welcome resource. Dare I say a bit of light for my darkness?

The site is broken down into categories that apply to all of us: Long Before Death, Eldercare & End-of-Life, After a Death, and Be There for Someone. These buckets are further broken down into key components or steps. These steps are presented simply, clearly with articles and tools, links and explanations, designed to educate and take action. The site is a one-stop resource for anyone interested in planning or learning: those in their 20s and 30s, and those facing the passing of a loved one, post death realities, and what to do and how to do it when a friend or family member dies. I know that for me, I winged the practical considerations at Donna’s death and stumbled along the way—largely I was on autopilot and just pushed through those first few weeks. Everplans could have served as my checklist and backstop resource. It may have even helped me face the grief of doing this alone.

More than ease of use, this site and the practical steps it presents are part and parcel of my larger reference point: HPM gives so much to the patient and caregiver. HPM is about treating the entire patient clinically, emotionally, and spiritually, while considering the same gestalt of the family. This is especially critical during the end of life and after the death of a loved one. I believe when we bring the services Everplans offers into caregiving, when these issues and tools are part of a family discussion, it opens emotional receptors within us that connect us to our loved one. It not only takes the worry and struggle with these topics off the table; it opens the conversation to include topics we may not want to address. And in addressing these issues openly we free ourselves and our loved ones from struggling with them, especially when they are least able to. Everplans is part of HPM, part of how to better live our lives.

In my opinion HCP and HPM providers should be pointing patients and families to Everplans (or sites similar) in order to guide patients through their options and to ensure critical paperwork is completed and put into the electronic medical records. Eliminating a potentially emotional and difficult task will aid the continuity of care and the well being of the patient, the caregiver, and family. 

After David S. Kime Jr.'s funeral, as his family and friends made their way to the cemetery, they made a pit stop in Kime's name: to a Burger King drive-through. Kime, a WWII veteran who died at age 88 on January 20 in York, PA, was a long-time fan of the Whopper Jr., and his family chose to honor him by purchasing his favorite sandwich.

Kime's daughter Linda placed the burger atop the spray of flowers on the casket at the cemetery, and said that the tribute was a way of honoring her father through "the things that brought him joy."

We think this is a wonderfully unique way of remembering someone who has died, and we're interested to hear your thoughts. Have you ever been a part of an unusual tribute like this one? What is your idea of a special tribute?

via York Daily Record