What it means to "hold space" for people, plus eight tips on how to do it well - Heather Plett

"In the two years since then, I’ve often thought about Ann and the important role she played in our lives. She was much more than what can fit in the title of “palliative care nurse”. She was facilitator, coach, and guide. By offering gentle, nonjudgmental support and guidance, she helped us walk one of the most difficult journeys of our lives. The work that Ann did can be defined by a term that’s become common in some of the circles in which I work. She was holding space for us. What does it mean to hold space for someone else? It means that we are willing to walk alongside another person in whatever journey they’re on without judging them, making them feel inadequate, trying to fix them, or trying to impact the outcome. When we hold space for other people, we open our hearts, offer unconditional support, and let go of judgement and control."

The eight excellent tips include being sensitive to how much information people want to have and finding ways to maintain their sense of power and control.

What it means to "hold space" for people, plus eight tips on how to do it well - Heather Plett:

Good Heaven Has a Free EOL Planning Guide

Good Heaven | Easy end-of-life planning helps to guide you through the steps to create an end of life plan that is right for you and your family.

"Mortal" -- An Extraordinary Film About Life and Death -- Free Online April 25, 2016

"MORTAL" Sheehan Statement from Working Pictures on Vimeo.

Register today, April 25, 2016, to see this remarkable film about how death helps give life meaning, if we let it.

I See Dead People: Dreams and Visions of the Dying | Dr. Christopher Ker...

6 Mistakes to Avoid When Doing Your End-of-Life Planning - Beliefnet - Beliefnet.com

This very good list reminds us to do it, to re-do it as necessary, to talk to our families and our doctors, and to make sure we have the person as our right health care proxy.


6 Mistakes to Avoid When Doing Your End-of-Life Planning - Beliefnet - Beliefnet.com:

Living, Laughing, and Loving at End of Life - Dena Kanigan at Health Talks

How Hospice Care Can Provide a More Positive End of Life Experience

Scientists Have Identified 11 Indicators of a ‘Good Death’ | Motherboard

Published in the American Journal of Geriatric Psychiatry, the paper reviewed 32 qualitative and quantitative English-language studies that addressed various preferences for how to die, according to three groups of what the researchers called “stakeholders”: patients, family members (before or during bereavement), and health care providers. The scientists discovered that all three of these stakeholder groups believed that 11 distinct elements contributed to a person’s well-being at the end of their life. According to the study, the indicators were: “preferences for a specific dying process, pain-free status, religiosity/spirituality, emotional well-being, life completion, treatment preferences, dignity, family, quality of life, relationship with the health care provider, and ‘other.’”

Scientists Have Identified 11 Indicators of a ‘Good Death’ | Motherboard:

6 Mistakes to Avoid When Doing Your End-of-Life Planning

"A recent review article has shown that patients who have planned in advance for the end of their lives spend less time in the hospital, receive fewer intensive treatments, and have greater quality of life when they reach their final days. In addition, their surviving relatives experience less stress, anxiety and depression during the process."

6 Mistakes to Avoid When Doing Your End-of-Life Planning:

NextAvenue: If I Get Dementia

Someone who knows she may not be able to ask for what she needs if she gets dementia asks for it now, just in case. An excerpt from Rachael Wonderlin at NextAvenue:

If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read and visit with friends.
If I get dementia, ask me to tell you a story from my past.
If I get dementia, and I become agitated, take the time to figure out what is bothering me.
If I get dementia, treat me the way that you would want to be treated.
If I get dementia, make sure that there are plenty of snacks for me in the house. Even now, if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
If I get dementia, don’t talk about me as if I’m not in the room.

What I learned reporting from the front lines of our struggle with death - The Globe and Mail

"It was not dying that he feared; it was the protracted process in which he would be drugged into unconsciousness and unable to communicate with his family. Yet that is how Dr. Low died several days later. Palliative care can dull the pain and sedate you until you die, but it cannot give you control or choice. Dr. Low had the best palliative care available, but it was not what he wanted. And it was not what his wife wanted for him. She told me later, lying beside her husband on his death bed was like “sleeping with a corpse.”"

What I learned reporting from the front lines of our struggle with death - The Globe and Mail:

When a doctor and patient disagree about care at the end of life - The Washington Post

"As a resident, I approach most end-of-life conversations with a narrow focus: Confirm a code status and get the name of an emergency contact person. “Do you want to be resuscitated if you lost your pulse?” “Do you want to have a breathing tube if you were unable to breathe on your own?” “Whom should we contact in case of an emergency?” I needed to document answers to those questions to finish my patient-chart note. With my pager ringing and admissions arriving, I usually didn’t have time for anything else. The patients I speak to, however, want so much more out of their end-of-life conversations."

What matters is not the checklist -- it is asking the patient what his or her goals are.

When a doctor and patient disagree about care at the end of life - The Washington Post

A Couple Coping with Alzheimer's

I was very moved by the resilience and enduring love in this story of a devoted couple who find a way to love and support each other even when memory falters.

Poem: Live, Die

LIVE, DIE: A GHAZAL

The door of the hospice room in which you die
stays open. Dreaming, you drift there, dying

in that floating bed of fierce arguments that live
on, until the moment when you no longer live.

Cheered on by a chorus of voices as you die,
“Go now! Go to the light!” Still, Don’t die!

Cries a dissenting voice within: a flickering live
Wire behind the nightlight’s angel face. Live

News at 7 AM, after the great orange moon dies.
Sunlight fingers a blue bowl of shaved ice. Die?

No. Not now. A tiny version of you pops out alive
From a burning wood, swims upstream, panting. Live

as Nurse Good’s softshoe entrance to applause, dying.
She smiles, squints at her syringe, held up, lit, like dye

bubbles lengthening in a radiant corridor: see lives
unborn (half-souls blindly pushing toward life)

gather outside time, inside your mind. Move! Die!
they cry. You won’t acquiesce. Mother, I cannot die

For you, I don’t know how. You brought me here alive.
You taught me everything but how to let you die.

— CAROL MUSKE-DUKES

Canadian Prime Minister Seeks to Legalize Physician-Assisted Suicide - The New York Times

"The government of Prime Minister Justin Trudeau introduced legislation on Thursday to legalize physician-assisted death for Canadians with serious medical conditions."


Canadian Prime Minister Seeks to Legalize Physician-Assisted Suicide - The New York Times

Architecture for EOL

Honoring Death | Moments of Life

Thoughts of a hospice worker: "I can think of no greater honor than the privilege of being present as another human being's life ends. There are no guidebooks, there are no rules to follow, and there are no words that I can say that makes it easy.   There is only the path leading from your heart.  Follow it and do not fear it.  Trust it to lead you where you need to go. "

Honoring Death | Moments of Life

The Dirty Secret about CPR in the Hospital (That Doctors Desperately Want You to Know) – K.V. Scruggs

 "In the hospital, your code status – whether you want to be resuscitated or not when your heart stops – has become a sort of surrogate for determining whether you really understand your prognosis. Of course, it’s not quite that simple. We know there are other considerations, such as deeply ingrained core values and past experiences with death – good or bad – that play into a patient’s wishes about their death. But the hospital is often the worst place to begin to have these important conversations. Patients in the hospital are sick, they’re scared, and they usually have no prior relationship with the physician who is trying to paint a realistic picture of their condition. Everyone in healthcare – assuming they don’t have their head in the sand – knows that the system, especially regarding end of life care, is terribly broken. While I believe we are on the path to improving this (within the last year, Medicare approved payment for voluntary end-of-life counseling), we still have a long way to go. But there are things patients can do to take back control of their health and the health of their loved ones."

The Dirty Secret about CPR in the Hospital (That Doctors Desperately Want You to Know) – K.V. Scruggs:

Surviving Bereavement by Suicide | Jess Neal

 "For me personally, the shock of suicide reduced my ability to accept the demands of daily life. I felt like I had lost my connection with the person I had once been. I knew I had to do something with my grief, but I didn't know how to begin. I was heartbroken, your entire being literally aches from the pain of the loss of someone so precious to you. I felt so alone, isolated, and dazed. Statistics say that if a child loses a parent to suicide they are three times more likely to take their own life. Thankfully for me I never reached this point but it is easy for me to see how, without the right kind of support and guidance, someone could end up drifting down that road.

In the days following on from my dad's funeral, I did what so many people do after losing a loved one, I went back to my life, the daily grind of living, all the while doing my best to accept my new adjusted life. But however hard I tried, I couldn't adjust. And I was far from accepting. A pivotal moment in my healing was when I joined a support group. They taught me that you have to surrender to your grief in acknowledgement that the only way to the other side is through it.

The best thing I ever did was to reach out to others for help. It saved me. I spent time with others who have been through losing someone to suicide, they have walked this walk and they encourage your need to grieve yet at the same time give you hope for healing. Having unsuccessfully completed counselling previously to this I felt uncertain if this would work, but I was desperate. I was desperate to talk about what my dad had done.

The thing I felt people, including counsellors were depriving me of. "Don't dwell on that; you must remember the good times; don't let suicide be the thing that defines your relationship with your dad." But ultimately it was and still continues to be. My dad made a decision to end his own life. And whilst that sentence is still incredibly painful to write I can now understand the reasons why he made that decision. I may disagree with his decision but I now understand that it was his decision to make. I may still feel pained by his decision but I now understand how I can live side by side with those emotions without feeling ashamed or guilty."

Surviving Bereavement by Suicide | Jess Neal

Dying Words: Talking About the End of Life

Patrice Hirsch Feinstein and Tara Sonenshine write in The Huffington Post about the importance of finding the right way to talk about end of life csre: "Talking about death is hard. Really hard. Studies show that most people, even in their later years, resist the notion of talking about dying. In fact, many media editors and news sites do not like featuring stories about end-of-life issues, viewing them as depressing. But more and more people are thinking about the issue. According to PEW Research Center, 37 percent of Americans say they have given a great deal of thought to their own wishes for end-of-life medical treatment—up from 1990. Yet over a quarter of Americans (27 percent) say they have given no thought or not very much thought to their own wishes....As the popular conversation builds, and states grapple with referenda and legislative moves to put the “death with dignity” issues on their ballots, we, as individuals, will have to grapple with words. Dying is a hard subject. But it’s part of life and should be part of our public dialogue."

Federal lawsuit filed to sell caskets in Alabama | Appnews | waaytv.com

"A Hazel Green woman who wants to build bio-degradable caskets has filed a federal lawsuit against the Alabama Board of Funeral Service. Under current laws in Alabama, only licensed funeral directors can sell caskets to the public."

Federal lawsuit filed to sell caskets in Alabama

500 Words That Describe What It Feels Like to Lose Your Mother

"And when you finally realize that life continues on, you realize you are here to live it, and live it for her. You remember the kind of life she wanted for you, and that’s a happy life. You feel her in the wind and you see her in the stars, she visits you in your dreams and she guards you with all of her heart. But most importantly, when you think of your mother, remember that she is constantly guiding you and sending you love when you need it the most. You will feel refreshed, you will feel her hug, you will feel her heart and that is when you will feel brand new. And each and everyday you will realize that you have all of these feelings, because you were lucky enough to call her your mother."

500 Words That Describe What It Feels Like to Lose Your Mother:

A touching story of an old father, son and a sparrow

10-Day SMART Decisions Challenge

Sign up here for help in preparing or updating advanced directives.

10-Day SMART Decisions Challenge:

In the last months or days, these treatments can make things worse - The Washington Post

"Medical advances bring the promise of extending life, but some of the treatments used in a person’s last months, weeks or days — such as CPR for failing hearts, dialysis for failing kidneys and feeding tubes for those unable to nourish themselves — often do not provide more time and can worsen quality of life. Yet saying no to more treatment is tremendously hard to do, whether that decision is made by patients or by relatives for patients who are too infirm to express themselves."


In the last months or days, these treatments can make things worse - The Washington Post:

After a Loved One Dies -- Dealing with the Stuff

 "I know the desire to fill countless storage units with every last belonging of the deceased can feel insatiable. But trying to keep a person alive by surrounding yourself with the stuff that he or she cherished is just a dream. In reality, death is as natural as life, and possessions will never bring that person back. Below, find some practical advice — handed over with love and compassion, and based on real-life experience — for dealing with what can feel like an impossible task. Keep in mind, though: Coping with death is incredibly personal, and there’s no right or wrong way to go about it. Take your time, but acknowledge when you’re ready to take the plunge. Unfortunately, it will never be an easy time to go through this process. But there is an inevitability that should be recognized. Although there’s no “right” time to face this undertaking, I do believe that it gets harder the longer you wait. Give yourself a few months, and then ask yourself: Do I have the strength to do this? Will waiting be beneficial or detrimental to my well-being? And when you feel ready to take the step, go about it with patience and bravery. Moving on in this way does not mean you’re “over” anything. It’s easy to feel heartless when getting rid of belongings that were so much a part of a loved one’s life. But practicality and emotions can coexist, and focusing on real-world necessities is an important part of dealing with death. Allow yourself to feel the emotions that come along with this endeavor, and be kind to yourself throughout. I went through the entire process ridden with tears, and that’s okay. Remember that things are only things. If you allow yourself to put weight and value on every possession, you run the risk of burying yourself in the physical. So take a moment to tell yourself that the material is nothing more than that. Recognizing this will help you let go of items that aren’t particularly special and need not be held onto."

Loss Of A Loved One - Organizing, Packing Tips:

Photographer Tom Hussey Shows Us the Elderly as They See Themselves

Photographer Tom Hussey shows us that no matter what we see on the outside, the people we look at see themselves as vital and engaged.

The Difference Between Complicated Grief and Normal Grief

 "Following are some of the symptoms that can indicate your grief has shifted into complicated grief if you are still experiencing them six months to a year after the death of your loved one: • Persistent and invasive thoughts of your loss that disrupt daily activities • Avoiding or feeling consumed by reminders/memories of your loved one • Unable to accept the finality of the death • Intense yearning for your lost loved one • Feeling angry about the death • Feeling numb or confused, developing a loss of trust in others • Isolating from others • Suffering physical symptoms similar to that experienced in the deceased’s final illness • Feeling that life is meaningless and hopeless without your loved one "

The Difference Between Complicated Grief and Normal Grief

Executive Producing Your Own Goodbye - Modern Loss

Jane Condon on her father-in-law's meticulous plans for his body, his obituary, and his funeral.

"We’re better at welcoming new life into this world than we are at saying goodbye. But some point we all end up on the off ramp, regardless of whether we choose to realize it. But before we hit the exit, there are a few important things to consider: the body, the obituary, the service, and the afterparty. And my father-in-law, Hank, taught all of us how it’s done. Hank died last January at 92. In December, two doctors declined to operate on his leaky heart valve. They didn’t think he’d survive. So we had a wistful but wonderful Christmas with him as he furniture-walked around the house, grabbing at table and counter tops with labored breathing until he finally settled in on the TV room couch. Fortunately for all of us, Hank was an engineer and a planner. Years earlier we’d received a blue folder filled with notes on what to do in the event of his death. He sent us these thoughts in the year 2000. He re-sent them in 2008, complete with an addendum from his wife called “When We Drop Dead.”"


Executive Producing Your Own Goodbye - Modern Loss