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New research at Stanford University shows that most doctors are reluctant to talk to their patients about what matters most at end-of-life. The Standford Letter Project will help you write a simple letter to your doctor about your values and life goals. Many people have written their letters and given them to their doctors. Write your letter now! The link at the bottom of the page will take you to the letter in different languages.
My Doctor’s name _________________________________
RE: What matters most to me at the end of my life
I have been reading and thinking about end-of-life issues lately. I realize how important it is that I communicate my wishes to you and my family. I know that you are very busy.
You may find it awkward to talk to me about my end-of-life wishes or you may feel that it is too early for me to have this conversation. So I am writing this letter to clarify what matters most to me.
My name ______________________________________
What Matters Most to Me
Examples: Being at home, doing gardening, going to church, playing with my grandchildren
My important future life milestones
Examples: my 10th wedding anniversary, my grandson high school graduation, birth of my granddaughter
Here is how we prefer to handle bad news in my family
Examples: We talk openly about it, we shield the children from it, we do not like to talk about it, we do not tell the patient
Here is how we make medical decisions in our family
Examples: I make the decision myself, my entire family has to agree on major decisions about me, my daughter who is a nurse makes the decisions etc.
Here is who I want making medical decisions for me when I am not able to make my own decisions
1._______________ 2._____________ 3._______________
What I DO NOT want at the end of my life
☐ I do not want to be on a breathing machine
☐ I do not want artificial liquid feeding
☐ I do not want dialysis
☐ I do not want to spend my last days in a hospital
What I DO WANT at the end of life
☐ I want to be pain free
☐ I want to spend my the last days in the hospital
☐ I want you to help me die gently and naturally
☐ I want to die at home
☐ I want hospice care
If my pain and distress are difficult to control, please sedate me (make with sleep with sleep medicines) even if this means that I may die sooner
☐ Yes ☐ No
What to do when my family wants you to do something different than what I want for myself?
☐ I am asking you to show them this letter and guide my family to follow my wishes.
☐ I want you to override my wishes as my family knows best.
☐ Other information you want to convey
Please scan this letter into my medical records in a place where your colleagues can read this and be guided by it. I thank you doctor for listening to me now and for the future work you are about to do guided by what matters most to me.
Your grateful patient, ____________________________
View this full document, and others in different languages HERE
Today is National Healthcare Decisions Day – A day to consider your options and share your wishes regarding the type of medical treatment and end of life care you want to receive in the event that you cannot speak for yourself.
Why does this matter? Let me share my experience with you….
At age 21, I watched my father’s health deteriorate after he was diagnosed with bladder cancer. Although he was given the option to make his medical care and end of life wishes known he did not give any instructions to his family or the medical team treating him. What happened next was horrible and a memory I cannot erase from my mind.
The cancer quickly progressed to his brain which left him incapacitated – his brain had shut down. My mother and I were forced to confront the end of his life, before he even died. It has been nearly 13 years since that Summer day when my family and I sat with a nurse to decide my father’s fate. I would not wish this upon anyone. THIS is why National Healthcare Decisions Day matters!
Yes, it is true….most people do not want to think about their own demise but let’s face it – modern technology hasn’t made it possible for any of us to live forever….at least not yet! We recognize that it can be hard to get the ball rolling, which is why we have some pointers to start the conversation as well as links to the legal forms for all 50 state advance directive forms.
Today, we challenge you to start the conversation about end of life planning by using our top 10 conversation starters. Share these with your friends by visiting our Facebook page, Pinterest board, or follow the conversation #nhdd on Twitter.com.
Facebook’s New Legacy Contact Feature
Facebook Legacy Contact Feature Released
Over 8,000 Facebook users die each day, yet Facebook’s terms and conditions haven’t kept up with the every growing issues surrounding death of social media users. Today, Facebook announced that it will now allow users to designate a Legacy Contact who can manage their account when they pass away. Proof of death through an obituary or death certificate will need to be provided and once the user’s death has been authenticated the designated legacy contact will be able to:
- Post an announcement, memorial information or special message on the top of the person’s timeline.
- Respond to recent friend requests from family members and friends who were not yet connected on Facebook
- Modify the deceased profile picture and cover photo.
It is also possible for Facebook users to give their legacy contact permission to download an archive of photos, posts and profile information that had previously been shared on Facebook. Considering how much content we all share on Facebook on a daily basis, the Facebook Legacy Contact feature could be quite helpful if you’re contemplating digital legacy plans for yourself and your family.
To get started —> Open your settings. Choose Security and then Legacy Contact at the bottom of the page.
Facebook has also redesigned memorialized profiles (a user’s profile that’s no longer “active”) by adding “Remembering” above the deceased’s name and making it possible for their legacy contact to pin a post to the top of memorialized profile Timeline. This provides the community with a signal, and the opportunity to pay tribute to the deceased. View the official press release from Facebook here.
If you’ve gone down the Facebook Legacy Contact feature route, we would love to hear your thoughts. How did you find the process? Was it helpful to start a conversation?
If you find this interesting, you might find our digital afterlife blog posts helpful.
- Update Your Will
- Determine who will get your assets when you pass
- This should be kept with your Power of Attorney (see below) and Advanced Directive (see below)
- People who should have a copy: Lawyer, You, Power of Attorney (whoever you decide)
- Designate Power of Attorney (when necessary)
- Gives someone the power to make financial decisions for you, when you are not able to make those decisions for yourself
- Ex. If you are in an accident and are left with no ability to think for yourself
- People who should have a copy: Lawyer, You, Power of Attorney
- Fill out Advanced Directive
- Designates your medical wishes
- People who should have a copy: Doctor, You, Power of Attorney
- Prepare a Contact List
- People who should be immediately notified of the death (immediate family, power of attorney, etc.)
- People who should be notified and invited to the funeral/memorial
- People who you DO NOT want notified and who are NOT to attend the funeral/memorial
- Plan and Write Out Wishes
- What type of service you would like
- Where you want the service
- Burial/Cremation/Donation to Science
- Where you are to be buried/cremated
- Write an obituary (optional)
- Allows you to decide what is written
- Make a list of important account information
- All accounts so they can be closed after your death
- Cell Phone
- Where your accounts are (bank, phone, etc.)
- Which bank?
- Which cable company?
- Make a list of death benefits & insurance policies
- Auto insurance
- Home insurance
- Life insurance
- Veteran services
- Social security
- Make a list of assets
When you die, there are many decisions to be made about your remains. Many people choose to have their bodies cremated after death; others choose an in-ground burial; still others choose to have their remains preserved in a mausoleum. Today, thanks to the great advances in medical science, more and more people are coming to realize the life-giving benefits of organ donation. By donating your organs upon your death, you give the gift of life to many others.
Last year alone, more than one million people benefited from organ and tissue transplants and each year that number grows. By donating your organs and tissue upon your death, you make the choice to provide life saving benefits to people all over the world.
Making the choice to donate your organs is an important decision, and one that you need to make sooner rather than later. Death can strike anyone at any time, and making the decision ahead of time to donate your organs guarantees that your death will bring life to needy and dying people.
Organ donation is completely cost free to the family of the donator and people of all races, nationalities, and ages are welcome organ donors. And the majority of world religions support the life-giving concept of organ donation, so there’s no need to concern yourself over difficult ethical issues.
It’s estimated that every ten minutes, a needy patient is added to the organ donation list. Sadly, thousands of the people on this list will die before receiving the organ they need. You can help decrease those numbers and increase the number of people who are able to go on living life thanks to your organ or tissue donation. Being an organ donor allows you to give the gift of life after you die, and guarantees you will be remembered for your selfless and humble act.
As you consider your life and the good you can bring to this world, make sure to look into organ donation and how you can give the gift of life after your death. Signing up to be an organ donor is easy and will give you comfort knowing that when you die, your life will continue to bring meaning to others. You can sign up to be an organ donor at most DMV’s (when updating or getting a license/identification card) or online.
I thought I had prepared myself for my grandmother’s death, I mean…we had gotten those “get to the hospital quickly” calls so many times over the 5 year period since Grandpa had died. I had been mentally preparing myself for this day over several years with grandma’s dementia progressively getting worse. February 2013 was the last time we would rush to the hospital, this time it was pneumonia but she made it through….beat the odds. She was one tough cookie!
4 months later, while I was at a farewell party for a friend I took a quick glance at my phone and realized that I had missed several calls and texts from family members. I didn’t even have to listen to the voice mails to know that something was wrong. I suspected it was the common “get to the hospital quickly” message but I never anticipated that I would be notified of my grandmothers death via voice mail.
Yeap, today’s technology provided us with ways to say “Grandma died in her sleep” without the long silence or awkward pause waiting for the person on the other end of the line to respond. That is good right?
Many people thought it was terrible to hear the news via voice mail, but I quickly realized why. One family member said “Oh Angela, I was so afraid you would have found out via Facebook…you were so close to her, I know that would have been horrible”. Those voice mails and texts were from people wanted to protect me from what I would see on social media as other family members started to grieve via today’s communication tools. Could you imagine finding out a loved one died via Twitter or Facebook? Well sadly it happens.
4 stories share the power of death and social media:
An entirely new set of issues with social media is playing a role in the grieving process. Would you be willing to get a photo of a loved one deceased in order to “virtually” properly identify the body? A New York Times article explores the power of death and social media for today’s generation “Online Generations Redefine Mourning“.
Vetted prediction tools can help estimate end-of-life, but clear and empathetic discussions with dying patients and their families are more important.
by Susan Kreimer
End-of-life conversations are common in hospital medicine, and Caitlin Foxley, MD, FHM, is no stranger to their nuance. She offers patients and loved ones as much factual information as she can. And regardless of their preference—aggressive treatment, comfort care, something in between—it’s ultimately their choice, not hers. But no matter what, she will ensure the patient’s pain remains under control.
“The way I practice is to allow my patients to make the end-of-life decision that is in accordance with their wishes, and not simply push the least expensive one on them,” says Dr. Foxley, medical director of IMI Hospitalists and hospital service chief of internal medicine at Nebraska Medical Center in Omaha. However, she adds, “most people, given accurate information in a compassionate manner, would choose to die at home, and not in an ICU on a ventilator, with chemo and pressers going through a central line.”
Although hospitalists differ in their approaches to end-of-life discussions, most agree that the majority of critically ill patients want to know their prognosis. Tested end-of-life prediction tools (more…)
Does my life have meaning? How will I be remembered? What kind of legacy will I leave behind? How can we harness some of the meaning and purpose of our lives and keep it from being lost or buried with us? Encapsulating our wisdom of life, our values, the lessons we have learned from adversity, where we have garnered strength, our beliefs and values and our prayers and blessings for loved ones and community can all be captured by writing a Wisdom Will®. A Wisdom Will is a legacy letter originating from the ancient Jewish Tradition on an ethical will. (I did not like the connotations attached to the word ethical, so I trademarked the name Wisdom Will.) It is a letter that links us to our survivors for generations and is a priceless and timeless treasure. Less daunting than a memoir, this grand gesture is an easy way to pass on our life’s learning and our wisdom of life.
Dr. Barry K. Baines book, Ethical Wills: Putting your values on paper inspired me to explore the Jewish tradition of the ethical will. In their tradition, the ethical will is a Mitzvah, or commandment, something God ordains one to do.
This practice dates back more than 3000 years. The first generally regarded evidence is in the Old Testament, Genesis Chapter 49. On his death bed, Jacob gathers his twelve sons around him so that he might bequeath his blessings, instructions and advice. In the New Testament, Christians find Jesus offering the same to his apostles. The practice of passing on one’s personal legacy, or one’s cultural legacy is not unique to Judaism. It is common among many ethnic and religious groups.
In antiquity the tradition was oral. When writing became common, ethical wills were written and read to loved ones and friends after death. Through the years, the practice lost its significance and few people wrote them. After 9/11, they began to resurface. The unpredictability of life smacked all of us in the face. We were forced to acknowledge that the unexpected happens. How wonderful it would have been for the families of those who perished in this tragedy to have Wisdom Wills from their loved ones. “Your Uncle Don died in Tower 1, but this is what life meant to him and what he wanted us to remember him for.” A Wisdom Will is something tangible to hang onto in times of overwhelming grief, bringing our loved one close to us even after they are gone.
Wisdom Wills bequeath wisdom; legal wills bequeath valuables. The greatest inheritance we can give or receive is one from the heart, and a document such as this comes from the very core of our being–an intimate place. In order for this learning to become long-lasting, we must share it.
Dr. Ira Byock, author of Dying Well, says that there are 5 tasks that people need to complete to experience relationship completion and peace at death. They are saying forgive me; I forgive you; thank you; and I love you. As death nears, the final task is to say goodbye (140).
These days, people are writing Wisdom Wills™ at turning points in their lives–before the birth of a child, prior to major surgery, when hearing one is terminally ill, before a graduation or Bar/Bat Mitzvah, soldiers in wars, losing a spouse or partner, and other life changing points as well as when one hears about them and becomes interested. Wisdom Wills are part of one’s legacy planning.
Though these documents vary in length from one to forty pages or more, we all have a plethora of information to mull over. David H. Kuhl, M.D., remarks,
Meaning, values, and purpose in life are often difficult to describe or speak about. The simplicity of childhood—right and wrong, black and white, true and false—changes to shades of gray and uncertainty in adulthood. Some people find comfort in religion or other spiritual practices. What was the religious tradition in your childhood, in your home, in your community? Have you ever had a religious experience? How did it come about? What were the immediate and long-term effects? Are there symbols in your life that are important to you? What principles guide your life? How does nature fit into your understanding of meaning or spirituality? What has given your life meaning in the past? Have there ever been times when your life felt meaningless? How has your sense of spirituality changed [over the years]? (What Dying People Want 152).
As a writing launch, consider composing a personal mission statement. The following is my personal mission statement:
I endeavor to live my life recognizing the equality of all human beings; seeking the light in others—no matter how difficult. I endeavor to be a messenger of compassion, hope and peace to those who suffer; doing all that I can to protect the planet; and, with God’s help, walk always in the footsteps of love.
These declarations are short and succinct, helping define who we are and what we stand for; they are tuning forks for living. We all embrace personal standards for living; these are the essence of our mission statements. Forming these ideals in word form may be a greater challenge than composing the entire Wisdom Will.
I like people to close their document with a statement such as: “I’d like to be remembered as….” My children often refer to me as a Lucille Ball, but I’d rather be remembered as a compassionate person, one who cared about humanity and tried to alleviate suffering wherever I found it. We have some control in how we will be remembered if we express our wishes in our Wisdom Will.
Wisdom Wills™ encapsulate the best of our past, present and future. Not meant to harass people from the grave, these documents are intended to uplift, give encouragement and are opportunities to share life strategies with others. They are positive documents.
Some people use a stream of consciousness approach selecting what they want to write about from it, or they make a list of questions to draw from. Limit what you talk about to a maximum of ten main points unless you want to write an autobiography or memoir. While these too are wonderful legacy documents, Wisdom Wills are shorter and more succinct. As works in progress, add to them from time to time as you grow. You may want to attach addendums; for example, family legends and stories.
Trust your instincts—look to the past to identify life’s pivotal points; look to the present for where you find strength, hope, joy and love and look to the future to offer sentiments and blessings, hope and encouragement.
Today is a good day to envision your legacy. Today is a good day to start writing. ##
Linda Ross Swanson offers individual Wisdom Will consultations and workshops for 6 people or more. To arrange a consultation or workshop please call her at 503.267.7550.
Today, we live in an increasingly electronic world. We pay our bills online, we do our banking online, and we even do a great deal of our communicating online. Whereas once we recorded much of our personal thoughts on paper, in a diary, or in some other form of written fashion, today much of what we record we do so in a locked online format. This article discusses what happens to your online life after you die and how you can leave your online legacy to your family.
Online passwords are meant to protect our information from would-be identity thieves and hackers. They ensure the safety of our personal and private data, but unfortunately, in the untimely event of your death, these online passwords can also lead to a frustratingly horrific nightmare for your family and loved ones. It’s important to make plans for your online life after you die, and to take important steps to ensure your family has access to everything they need once you’re gone.
One of the greatest and most necessary steps for every single person who stores any amount of information on a computer is to have a planned release of passwords and other sensitive information to their loved ones in the event of their death. Simply having a master list of passwords and other information available may not be enough to help your loved ones sort out your online life, and as a result many people have turned to companies like Legacy Locker to store their passwords and critical information.
Companies like Legacy Locker have master databases that safely store your critical data in encrypted form to ensure they are safe against would-be identity thieves. At the same time Legacy Locker has a system in place to release your critical information to the person or people you have chosen in the event of your death, making it easier for your loved ones to sort out your online life after you are gone. And Legacy Locker has a system in place to verify your death and the identity of your loved ones prior to releasing sensitive information, so your passwords won’t fall into the wrong hands.
No matter what stage of life you are in it’s important to protect your life and preserve it in such a way so that if anything ever happens to you, your loved ones will be able to pay your bills, access your social networking sites, and sort out the details of your online life.
As a veteran, you fought hard for the freedoms that this country enjoys, and as such you are owed a great deal of gratitude. Part of the gratitude shown by this country for your service is expressed in the form of Veterans benefits. Veteran’s benefits include a multitude of things like free health care and increased pension, but perhaps the most important benefits for you and your loved ones to be aware of are the benefits given to Veterans when they pass away.
According to the laws of the United States, families of eligible Veterans who pass away are entitled to full military funeral honors ceremony. This ceremony includes the playing of taps by a trumpeter, the folding of an American flag, and the presentation of said flag to the widow or a family member of the deceased. This military funeral honors ceremony is also generally attended by at least two uniformed military Veterans.
Currently there are 131 national cemeteries in the United States which serve as burial grounds for fallen Veterans. These cemeteries offer to eligible Veterans a full military honors ceremony, opening of the grave, closing of the grave, upkeep on the grave site, a government headstone, an American flag, and a Presidential Memorial Certificate. Veteran benefits come at no cost to the family of the eligible Veteran, and they provide the perfect and serene resting place the soldier in your family deserves. Every Veteran of the United States Military deserves to be honored, and burial at one of the 131 national cemeteries is the perfect way to provide that honor to your loved one.
If you are the family member or loved one of a Veteran who has passed away, or you are a Veteran who wants to make arrangements for your funeral, nearly any funeral home will be able to make arrangements to contact the Department of Veteran’s Affairs and request this full military funeral honors ceremony. The ceremony will be a fitting way for you to say goodbye to the fallen Veteran in your family, marking the occasion with the pride and honor they deserve.