Friday, March 31, 2017

A Hospice Nurse: "The Family Is Your Patient"

In hospice, the family is your patient. They’re truly living their darkest days. For many of them, this admissions meeting is an overwhelming process. Every emotion that they have inside of them that maybe even hasn’t ever surfaced might come to the top. But I don’t want families to cry.

During that first meeting I don’t say: “So this is what we do for people who are dying.” I say: “Hospice is not about dying. It is about living the remainder of your life how you want to. Not how I want you to, not how your husband, wife, daughters, or sons want you to, and not how the doctor wants you to, but how you want to.”

If you think about the last time you went to the doctor, he probably said, “Okay, this is what I think. These are the tests I want to run.” Nobody asks you, “What do you think? Does this sound reasonable? Do you want to do it?” Nobody tells patients how their quality of life is going to go down the toilet when they get chemo. So it’s sometimes hard for patients to wrap their head around the idea that everything is their choice now, they’re driving the ship. That’s the mission of hospice.

Monday, March 27, 2017

Second chance to learn about death and dying through free online course - Palliative Care

"Enrollments open today for a free, web-based course that allows people of all ages to learn about death and dying, and engage in supportive discussion.

Dying2Learn is the second Massive Open Online Course (MOOC) to be offered by online palliative care resource CareSearch. The five-week course, which starts on 3 April, 2017 will have the same content as the Dying2Learn MOOC offered in the middle of last year.

 CareSearch research fellow Deb Rawlings says about 800 people actively participated in the previous MOOC, and many said they were surprised to have really enjoyed it. “You don’t go into this sort of thing thinking ‘I’m going to have a great time here’, but people did and they were surprised by how many like-minded people they met,” she says.

Dying2Learn will have four modules:

  • How does today’s society engage with death and dying? How do we use language to describe it? What about the role of television and film? 
  • What does death ‘look’ like? How is death and dying portrayed in the media? 
  • If death is the problem, is medicine the answer? A look at what we die of, the role of medicine, and prolonging life versus prolonging death.    
  • Digital dying: Death during the internet-age."

Second chance to learn about death and dying through free online course - Palliative Care:

Eulogy for a Fairy Princess – Lisa Williams on the Woman She Loved

"Whenever I came into her presence I’d feel a sense of relief and well-being wash over me. “It’s like I’m dating a character from a children’s book,” I said. Just a little unearthly. Don’t let yourself think that she wasn’t a grownup; she was responsible, scrupulous with money, prompt, hardworking. I once saw her Priority Mail her electric bill so it wouldn’t be late. But…she wasn’t quite like us....Children loved her. Don’t children always know the magic?

Eulogy for a Fairy Princess – Medium

Sunday, March 26, 2017

John Kaag and Clancy Martin: Looking Death in the Face

Philosophy professors John Kaag and Clancy Martin write eloquently about how a death 3000 years ago can inspire us to think about life.

We tend to defer the question of living or dying well until it’s too late to answer. This might be the scariest thing about death: coming to die only to discover, in Thoreau’s words, that we haven’t lived.

Facing death, though, is rarely simple. We avoid it because we can. It’s easier to think of “dying” as an adjective than a verb, as in a dying patient or one’s dying words. This allows us to pretend that dying is something that is going to happen in some distant future, at some other point in time, to some other person. But not to us. At least not right now. Not today, not tomorrow, not next week, not even next decade. A lifetime from now.

Dying, of course, corresponds exactly with what we prefer to call living. This is what Samuel Beckett meant when he observed that we “give birth astride the grave.” It is an existential realization that may seem to be the province of the very sick or very old. The elderly get to watch the young and oblivious squander their days, time that they now recognize as incredibly precious.

When dying finally delivers us to our unexpected, inevitable end, we would like to think that we’ve endured this arduous trial for a reason. Dying for something has a heroic ring to it. But really it’s the easiest thing in the world and has little to do with fame and fortune. When you wake up and eat your toast, you are dying for something. When you drive to work, you’re dying for something. When you exchange meaningless pleasantries with your colleagues, you’re dying for something. As surely as time passes, we human beings are dying for something. The trick to dying for something is picking the right something, day after week after precious year. And this is incredibly hard and decidedly not inevitable.

A More Thoughtful "Handover Bag" for the Bereaved

Whether someone dies in a hospital, hospice or residential aged care facility, it’s not unusual for their possessions to be passed back to their family in a plastic garbage bag. An End of Life Care Committee in Queensland has developed a more sensitive and respectful approach, which it hopes will be adopted nationally.

The Committee, from Sunshine Coast Hospital and Health Service (SCHHS), developed handover bags, which are printed with a tree symbol designed to represent the cycle of life.

“The aim of the handover bags is to convey to the family and staff that whilst the person was a patient with us, we cared for them and respected them,” says SCHHS principal project officer for End of Life Care, Wendy Pearse.

“This care and respect begins the moment they arrive with us, until the time they leave. We will treat their belonging with the same care and dignity that we showed to the person who died.”

The same purple symbol is printed on resources which can be given to families in the bag, including a bereavement card and a booklet titled “When someone dies…”. It also features on door signs which indicate to staff and visitors that a patient has died.


Thursday, March 23, 2017

At Green-Wood Cemetery, a Friendly Place to Talk About the End | Village Voice

Amy Cunningham, wearing Buddhist prayer beads and rose-colored pom-pom earrings, prepared to lead the discussion. She's run the Brooklyn Death Café, an offshoot of the international movement to normalize conversations about death, since 2015. "These Death Cafés are, in our own way, bringing the dead back into our daily lives," Cunningham explained, "by visiting and communing with them and going to spaces like the crematory and seeing the urns in the wall. This is altogether a healthy and positive thing." Cunningham, who worked as a writer and editor for decades, became involved in the death industry after her own father's passing, with hopes of helping others cope with the passing of a loved one as her own funeral director had helped her. She is now an independent funeral director focused on eco-friendly burial and cremation. The cafés, which she leads as a volunteer, are another element of her practice. "I just thought it'd be a nice way to educate people," Cunningham says. "Death shouldn't be so scary. The more we move in toward death, the more we'll learn and put ourselves at ease about our own inevitable demise." 

At Green-Wood Cemetery, a Friendly Place to Talk About the End | Village Voice:

Sunday, March 19, 2017

Hospice Chaplain Writes About Her Talks with the Dying

"It took me a while to understand that talking about their family and their relationships within their family, their love relationships, was their way of trying to understand these larger spiritual questions.... We’re all meaning-making creatures. All our lives, this is what we’re doing, whether or not we realize it. If you think of these big spiritual questions — why am I here, what does it all mean, why am I suffering now? — those are really hard questions, and so we tend as human beings to want to talk about the abstract by thinking about concrete examples. When we talk about God as love, it’s really natural for people to think: What have my experiences of love been? And what do those experiences, good and bad, teach me about God?"

Hospice Chaplain Writes About Her Talks with the Dying

I Know You Love Me — Now Let Me Die

 A doctor writes about the mistake of "adding time but not life."
When it comes time for us to be called home, those of us in the know will pray that when we gaze down upon our last breath we will be grateful that our own doctors and families chose to do what they should instead of what they could, and with that we will close our eyes to familiar sounds in a familiar room, a fleeting smile and a final soft squeeze of a familiar hand.

I Know You Love Me — Now Let Me Die

Sunday, March 12, 2017

Love After Loss

We didn’t think Randy’s mother would thrive or even survive when she was widowed. Larry and she had also been together since they were teens. She wasn’t eager to move into a senior living community, but we wanted her to be closer to us, so we insisted. It took months for her to go from resentful to enthused. She made friends and signed up for chair yoga, current events, and every museum outing. She dyed her hair red. She was an energetic dumpling zipping around on her walker, usually with a banana or two tucked inside the seat. (When we flew to Chicago for my stepdaughter’s wedding, Ruth was stopped going through security. A gun-like object had appeared in the seat of her walker: a banana.)
Then, over a hot bridge game, she met Otto, now 94 years old.
He’d had so many illnesses and operations that even he couldn’t believe he was still alive. “I have no organs left,” he said. “I’m held together by pills.” By then, Ruth was back and forth to hospitals with heart problems. But that failing heart adored Otto. At night they’d take turns visiting each other’s apartments and watch reruns of Hogan’s Heroes, sometimes The Carol Burnett Show....
Last December, when the doctor told Ruth that her heart had weakened, she said, “No more hospitals.” He explained that she would “most likely pass from this.” Her response: “I’ve led a blessed life. I’m ready to go home.”
Hospice care was set up in her apartment. The way she wanted. When we received the early morning call from an aide saying that Ruth’s pulse had stopped, that she was gone, we hurried over to find hospice workers waiting in her living room. But it was a sobbing Otto who was sitting by her bedside, watching over her, until Randy and I arrived.

Wednesday, March 8, 2017

When is dying a laughing matter? Hospice humor gains a following -

The therapeutic humor movement is catching on. Last year, the Minnesota Network of Hospice and Palliative Care, which serves Minnesota, Wisconsin, Iowa, North Dakota and South Dakota, closed its annual conference with a session from a humorist. And this year, the conference will open with a session on laughter yoga. “Laughter, of course, is a healthy thing,” said Susan Marschalk, the network’s executive director. “It’s certainly good for people who are caregivers. It’s really good for hospice providers and the people who are working with patients who witness people dying every day. They need laughter.” The connection between humor and health also is recognized by the Association for Applied and Therapeutic Humor. Based in Illinois, the group was started by a registered nurse and has members in Minnesota from various professions — including scholars, psychologists, nurses and doctors. Therapeutic humor is “any intervention that promotes health and wellness by stimulating a playful discovery, expression or appreciation of the absurdity or incongruity of life’s situations,” the group’s website says. “There is a very close relationship between laughter and tears,” said Mary Kay Morrison, president of the association and a self-described “neurohumorist.” “Laughter is a relief. When you laugh so hard that you cry, there is a close connection there. It’s something that brings relief from the stress and anxiety. “Even in hospice, I believe when someone is able to laugh about the situation, you know they are starting to accept it and starting to cope with it,” she said.  “Even in hospice, I believe when someone is able to laugh about the situation, you know they are starting to accept it and starting to cope with it,” she said.

When is dying a laughing matter? Hospice humor gains a following -

Monday, March 6, 2017

Stages of Grief

A post shared by Mari Andrew (@bymariandrew) on

Intimacy | Richard Griffin

Richard Griffin wrote a touching piece about how his conversations with a terminally ill friend have changed their relationship and opened him up to greater intimacy.

My friend Frank (not his real name) answers his phone. He has this notoriously unreliable Bluetooth earpiece that he loves to use. Today it’s having a bad day. He sounds like a Martian. I tell him I’ll call back. When he answers the second time he’s no longer a Martian. I say, “Ah! It’s my old friend Frank – the one I know and love!” 
This joke brings him to tears because he’s not my old friend Frank, he’s the new Frank. The one who is fighting a disease that will shorten his life dramatically. This sort of painful moment has become more and more common in our conversations. We’ve been doing these regular phone calls for several years now, starting long before the disease was discovered. In the beginning, our conversations were sometimes awkward, maybe even boring. But they were meaningful enough that we kept having them. Today, neither of us would give them up for the world. They have become a touchstone of sanity for us, a sanctuary from an increasingly chaotic and unpredictable world. We have discovered that we love these conversations and we love each other. 

Intimacy | Richard Griffin :

TED Talk: What I Learned from 2000 Obituaries

Friday, March 3, 2017

Stifled Grief: How the West Has It Wrong | The Huffington Post

Michelle E. Steinke writes in the Huffington Post that we need to let go of our assumptions about grief:

"I’m here to say that the West has the concept of grieving all wrong. I’d like to point out that we are a culture of emotionally stunted individuals who are scared of our mortality and have mastered the concept of stuffing our pain. Western society has created a neat little “grief box” where we place the grieving and wait for them to emerge fixed and whole again. The grief box is small and compact, and it comes full of expectations like that range from time frames to physical appearance. Everyone who has been pushed into the grief box understands it’s confining limitations, but all of our collective voices together can’t seem to change the intense indignation of a society too emotionally stifled to speak the truth. It’s become easier to hide our emotional depth than to reveal our vulnerability and risk harsh judgment. When asked if we are alright, it’s simpler to say yes and fake a smile then, to be honest, and show genuine human emotion.
 Let me share below a few of the expectations and realities that surround grief for those who are open to listening. None of my concepts fit into societies grief box and despite the resounding amount of mutual support by the grieving for what I write below, many will discount my words and label us as “stuck” or “in need of good therapy.”

I’m here to say those who are honest with the emotions that surround loss are the ones who are the least “stuck” and have received the best therapy around. You see, getting in touch with our true feelings, embracing the honest emotions of death only serve to expand the heart and allow us to move forward in a genuine and honest way. Death happens to us all so let’s turn the corner and embrace the truth behind life after loss."

Stifled Grief: How the West Has It Wrong | The Huffington Post:

You May Want to Marry My Husband - The New York Times

A dying woman writes about the husband she loves and her hopes that he will find love again.

"No wonder the word cancer and cancel look so similar. This is when we entered what I came to think of as Plan 'Be,' existing only in the present. As for the future, allow me to introduce you to the gentleman of this article, Jason Brian Rosenthal. He is an easy man to fall in love with. I did it in one day."

You May Want to Marry My Husband - The New York Times