Tuesday, May 31, 2016

The enemy is not death. The enemy is needless suffering

"With the increasingly complex, confusing, and expensive nature of medical care, it is more important than ever that doctors “get it.”  They must accept that the enemy is not death; the enemy is needless suffering. They must understand the limits of their role. They must appreciate and respect the strength of their fellow man and the rights of every patient to choose their destiny. The final part of life is about being alive, not about death. Only by seizing those precious moments, deciding our own fate, can we hope for quality, comfort, and dignity."

The enemy is not death. The enemy is needless suffering.

No Guilt About Relief When Grieving

"Assumption # 1: People often think they experience emotions one-at-a-time. Typically in any given moment if I were to ask you how you felt, you’d probably identify the most prevalent feeling – i.e. “I am scared”, “I am happy”, or “I am overwhelmed”.  However in many situations, you can (and often do) feel multiple emotions at the same time.  You may even feel emotions that seem inconsistent with one another.  Ever heard of the phrase “mixed emotions”?

Assumption #2:  People often assume that feeling one emotion somehow detracts from or negates another.  So you may think to yourself – “If I am feeling relief, then I can’t possibly be as sad as I should be.”   When in reality you can be super sad and also a little relieved at the same time because emotions aren’t mutually exclusive.  You can have two emotions about two totally different aspects of an experience. You can feel relief that distressing emotions and physical pain have ended, but this relief does not lessen the devastation and intense sadness caused by the death of a person who you love very dearly."

What's your grief?:

How Do You Feel About Being Turned Into Compost When You Die? | Co.Exist | ideas + impact

 "Death is natural, but modern burial is definitely not: Every year, more than 90,000 tons of steel and 4 million acres of trees are used to build coffins in the U.S., and more than 750,000 gallons of formaldehyde is used in embalming, so bodies can't naturally decompose. Cremation requires a heavy dose of fossil fuels. Even when we're dead, most Americans keep adding to our carbon footprints.

Can the rituals around death be redesigned to become more sustainable? With her Urban Death Project, designer Katrina Spade has been working on a greener alternative for the last three years. Along with the environmental issues, the design also considers the problem of space—cemeteries in the U.S. take up about a million acres of land, and as populations grow, even more space is needed. Spade wanted to find an answer that would allow people to be buried in cities."

How Do You Feel About Being Turned Into Compost When You Die? | Co.Exist | ideas + impact:

Monday, May 30, 2016

Terminally Ill San Diego Woman Plans To Take Advantage Of Aid-In-Dying Law | KPBS

Nita said they never really talked about death before Eurika was diagnosed with ALS. Since then, the topic has been unavoidable. “And it’s weird, how it hasn’t diminished the beauty of life at all," Nita said. "In fact, if anything, it’s highlighted how awesome our lives have been, independently and together.”... 
 “I’m full-time taking on the passing of my life partner, my wife, the love of my life, my best friend," Nita said. "And it’s really becoming close to the end now, and I’m still not really thinking about her dying. I’m thinking about her being alive right now and in the living room. And that that’s where I want to be.”


Terminally Ill San Diego Woman Plans To Take Advantage Of Aid-In-Dying Law | KPBS:

Friday, May 27, 2016

64 Things We Wish We Had Known About Grief

It's OK to Die™

It's OK to Die™ is a comprehensive guide urging everyone to prepare in advance, to assure their own peace and to prevent the suffering of their loved ones, with insights into the process of dying, guidance for obtaining emotional and spiritual closure, clear explanations of end-of-life medical treatment options, new tools for making challenging medical decisions, and numerous other action steps to give people a sense of control and confidence in their choices.  The authors urge us to openly discuss death and dying in the public arena, to reconsider "how we die" in our culture, and urge politicians to lay aside differences and pass legislation that will reduce suffering among those approaching the end of life, reduce depression and guilt among surviving family and friends,  and reduce the federal and state expenditures for procedures that add to suffering and reduce the quality of life.

The Best Self Improvement Book of All Time | It's OK to Die™

Tuesday, May 24, 2016

My phone is a time machine to where my husband is still alive.

My phone is my time machine, and the cool blue light that is undoubtedly destroying my circadian rhythms helps me slip easily into another life, the one where I’m 28 and recklessly, heedlessly in love with a man who makes me Robyn mix CDs and leaves them in my car. The one where I’m 29 again and pregnant with the baby the doctors told me not to have but who I knew would keep my husband alive a little bit longer. Or the one where I’m 31 again, carrying the man I love down the hallway to the bathroom, staying up at night to hear his breath, knowing someday I would miss that gentle sound.... Our son knows his father through my phone. Ralph was 22 months old when Aaron died, and any memories he has of him are all mixed up with stories he’s heard from me and photos and videos he can see whenever he’d like. His elegant toddler fingers carefully swipe their way through photos of his father in chemotherapy, on top of the colorful adobe murals of Salvation Mountain in the California desert, doing his favorite “tourist wave to the camera” in front of an explosion of paint and color. Ralph consumes videos of Aaron reading him bedtime stories the way other kids binge Curious George. He knows that Aaron is gone, and that he will not return, but death is a hard concept to grasp, even for me. It seems impossible that Aaron could be dead, even though I licked his ashes from my fingertips when we spread them in the Rum River. “Will he come back?” Ralph sometimes asks, and the answer I give him always shocks me. “No, he won’t,” I say heavily. Ralph nods silently and moves on. He is in the acceptance phase of grief, and I am jealous. Someday that truth will hurt him, but now, he only knows it should hurt, because he sees that it hurts me that we are both fatherless. “Damn it!” he says, “our dads are DEAD!” He shakes his head as he sits with me, holding my hand and marveling over the what-the-hellness of it all, then hits the play button again. It’s a way to pretend that when I say “my late husband” I mean that he is actually just chronically tardy.... Denial is one hell of a drug, and that’s what these digital caches provide me: a way to pretend that when I say “my late husband” I mean that he is actually just impolite and chronically tardy, and not dead of brain cancer at 35. My phone is a time machine to where my husband is still alive

Monday, May 23, 2016

Awake At The Bedside - Zen and the Art of Dying

"The editors of Awake at the Bedside: Contemplative Teachings on Palliative and End-of- Life Care want to make one thing very clear: this book is not about dying, it’s about life and what it can teach us, it’s about caring and what giving care really means. Equal parts instruction manual and contemplative testimony ,this book addresses how we think about death and dying and examines current practices in palliative and end-of-life care, with important suggestions for improvement. "

Awake At The Bedside - Zen and the Art of Dying

Sunday, May 22, 2016

'The patient is Code 3 critical. Her frail, 90-year-old body is failing. How much should I do to save her life?' - LA Times

"I can't help wondering if what makes end-of-life decisions so complicated is our definition of medicine itself. The idea of doctoring as a pitched battle against disease is compelling. But it belies the uncomfortable fact that physicians are really more stewards than soldiers. Our patients, and indeed each of us, always die in the end. It's remarkable and good that medicine allows us to live 25 years longer on average than we did 100 years ago. But sometimes my profession forgets that the end point of medical innovation and intervention isn't immortality."

'The patient is Code 3 critical. Her frail, 90-year-old body is failing. How much should I do to save her life?' - LA Times

We doctors can’t prescribe a ‘good death’ | Opinion | The Guardian

There is a perception – even a consensus – that death is a problem that medicine should somehow sort out, that a “good death” is something that doctors should be able to prescribe, as we might prescribe a course of antibiotics. But our needs are spiritual, not medical. Medicine’s dominion should be limited and explicitly defined. Medicine, and our culture, would be healthier and happier if we stopped expecting it to solve our existential problems, if we stopped thinking of our bodies as machines, and if we gave up our fantasies of control and immortality. 
We cannot, like misers, hoard health; living uses it up. Nor should we lose it like spendthrifts. Health, like money, is not an end in itself; like money, it is a prerequisite for a decent, fulfilling life. The obsessive pursuit of health is a form of consumerism, and impoverishes us. Medicine should give up the quest to conquer nature, and revert to its traditional, creaturely role of accompanying the dying: the doctor as amicus mortis. It is as difficult, however, to advise someone how to die, as it is to advise them how to live. Death cannot be sanitised or workshopped. We are frail and vulnerable animals yet we have come to believe that everything that happens to us – including death – is our fault, our doing, our responsibility. Human agency has replaced the power of nature, in Freud’s words, “majestic, cruel and inexorable.”

We doctors can’t prescribe a ‘good death’ | Opinion | The Guardian:


Friday, May 20, 2016

Bad News Delivered Badly - The New York Times

How should a doctor deliver bad news?  Better than the examples in this article.

"It cannot be easy for oncologists to deliver bad news so frequently, but it must be worse for them when they deliver bad news badly. The manners of patients erode as we become maddened by confusion and dread. Injurious words should never add insult to the injuries medical professionals witness and patients suffer daily. "

Bad News Delivered Badly - The New York Times

Goodbye Friday: A Mother Mourns a Miscarried Baby

"In the following weeks I pursued grief in every dark corner, on every flower petal, in any suggestive melody. I needed to feel all the dimensions of losing this much-wanted child. We told our children, friends, my parents. I cried in public and in private. I lit candles, picked flowers, said prayers, wore black. I moved slowly through the day, hoping to avoid accidents due to clumsiness, and also to slow things down mentally and spiritually. In the evening, I sat in the dark in our once-and-not-future nursing chair, listening to a sleeping Rose who made no sound. Each night in the bath, I spoke a few words out loud to the baby. Before long, my most urgent messages were expressed, and so I stopped. With a small number of trustworthy people I shared certain details....In chasing grief, I did not mean to disappear or wallow. I meant to find its dance partner, healing. I have made the mistake in the past of burying grief. I don’t want to walk with a limp for the rest of my life. In my travels with sorrow I pictured a series of nesting boxes. In the smallest, innermost box, I placed the core loss: I will never meet this already-beloved child. In the next box, I placed corollary losses: I won’t be pregnant, give birth, or breastfeed again. I won’t have another daughter or see another personality unfold in that glorious period from birth to age seven...I had often wondered how my parents recovered from the loss of a child; I wonder still, only with a new drawer of feelings thrown permanently open. "

Goodbye Friday

Tuesday, May 17, 2016

How might we reimagine the end-of-life experience for ourselves and our loved ones? - Planning Mom’s Funeral . . .With Barbra Streisand’s Help

"How do we ensure that the people we love have the best possible life, and death? The two go hand-in-hand. It’s okay to say, “I’m uncomfortable,” or “It makes me sad,” but we must be willing to start an open and honest dialogue about end-of-life issues. That’s the only way to effect change."


OpenIDEO - How might we reimagine the end-of-life experience for ourselves and our loved ones? - Planning Mom’s Funeral . . .With Barbra Streisand’s Help

We are all just a millimetre away from death, all the time. If only we knew it | Cory Taylor | Life and style | The Guardian

 " have heard it said that modern dying means dying more, dying over longer periods, enduring more uncertainty, subjecting ourselves and our families to more disappointments and despair. As we are enabled to live longer, we are also condemned to die longer. In that case, it should come as no surprise that some of us seek out the means to bring a dignified end to the ordeal, while we are still capable of deciding matters for ourselves. Where is the crime in that? A sorrowful goodbye, a chance to each beloved face for the last time before sleep descends, pain retreats, dread dissolves and death is defeated by death itself."

We are all just a millimetre away from death, all the time. If only we knew it | Cory Taylor | Life and style | The Guardian:

Can Alzheimer's Be Stopped? | NOVA

Huge Gap Between Thinking, Doing in End-of-Life Care | Home Health Care News

"When it comes to end-of-life discussions, there tends to be a major disparity between thought and action. In Massachusetts, for example, 85% of residents believe that patients and their doctors should discuss end-of-life care—but only 15% of them have actually had these conversations. The figure doesn’t rise much for people who have serious illnesses—only about a quarter of those Massachusetts residents have talked to their doctor about end-of-life care.

That’s according to a survey from the newly established Massachusetts Coalition for Serious Illness Care, a group of 58 health care organizations brought together by Blue Cross Blue Shield of Massachusetts and other end-of-life-care experts...Of the survey respondents who had a loved one die in the past year, one-third said that person’s patient preferences were not carried out completely. One-fifth of those respondents, meanwhile, described the end-of-life care that their loved one received as only fair or poor."

Huge Gap Between Thinking, Doing in End-of-Life Care | Home Health Care News

The Importance of Conversation for Children That Are Grieving | Scott Salter

"For a child, grief may resurface as their cognitive ability changes and with life events. Unlike adults, who stay with their grief, children often jump in and out of their grief. This means that they may initially be upset about their loss but may then appear to be fine for a period of time and then may become upset again, and so on. This can be very confusing both for children and the adults who care for them and will need time and understanding to help process their loss. The importance of conversation is integral for children following bereavement. By talking about death - even the most difficult aspects - children are able to understand that this is something they are able to cope with."

The Importance of Conversation for Children That Are Grieving | Scott Salter

Sunday, May 15, 2016

Sheryl Sandberg graduation speech: It’s the hard days that determine who you are - The Boston Globe

In Sheryl Sandberg's commencement address, she talked about what she experienced following the sudden death of her husband last year.

"For many months afterward, and at many times since, I was swallowed up in the deep fog of grief — what I think of as the void — an emptiness that fills your heart, your lungs, constricts your ability to think or even to breathe. Dave’s death changed me in profound ways. I learned about the depths of sadness and the brutality of loss. But I also learned that when life sucks you under, you can kick against the bottom, break the surface, and breathe again. I learned that in the face of the void — or in the face of any challenge — you can choose joy and meaning. "

Sheryl Sandberg graduation speech: It’s the hard days that determine who you are - The Boston Globe:


Saturday, May 14, 2016

Dying Consciously - Ram Dass

"My view has evolved to seeing death — the moment of death — as a ceremony. If people are sitting with you to help as you are going through this dying ceremony, help them to see you as the soul you truly are, not as your ego. If they identify you as your ego, during the last part of this ceremony they will cling to you and pull you back instead of facilitating your transformation. Sadhana, either a specific practice or your overall spiritual transformation, begins with you as an ego and evolves into your being a soul, who you really are. The ego is identified with the incarnation, which stops at the moment of death. The soul, on the other hand, has experienced many deaths. If you’ve done your sadhana fully, there will be no fear of death, and dying is just another moment. "

Dying Consciously - Ram Dass

10 Things Your Doctor Won’t Tell You About DyingThe Amateur's Guide To Death & Dying | The Amateur's Guide To Death & Dying

"Death is a subject many people do not like to discuss, but it’s a part of life that we will all have to face. Sometimes the more you know about a certain subject, the less frightening it becomes. Here are 10 things you may not know about dying."  This is a very useful and even reassuring list for those who are at the end of life and those who are caring for them.

10 Things Your Doctor Won’t Tell You About DyingThe Amateur's Guide To Death & Dying | The Amateur's Guide To Death & Dying:

Friday, May 13, 2016

I am dying and I want everyone to talk about it | Healthcare Professionals Network | The Guardian

"[M]y biggest challenge is trying to talk to you about the fact that soon, I will die. There’s something about death that people can’t face. We thrive on life; we celebrate it at every opportunity whether it’s a birthday or a christening. And yet, even though everyone who lives will die, death remains the elephant in the room. It’s a stigma, something we need to tiptoe around and leave to care professionals. I’ve planned my funeral. Everything is organised other than the type of coffin I’ll have This is a plea – to my family, my carer, doctors and specialists; to my friends and neighbours, and the people I’m yet to meet: start talking about death as much as you talk about life. Think of death as something you can control, where you can live out your last wishes safe in the knowledge that the ones left behind will be able to cope without you. Start talking to your children about death as a natural process, not something to be scared of. Children are taught about sex, drugs and taxes, but not how to cope with death. We need to have conversations about dying – because yours could happen before mine."

I am dying and I want everyone to talk about it | Healthcare Professionals Network | The Guardian:


Thursday, May 12, 2016

They said my dad was having a stroke. I wish I had been able to handle it better. - The Washington Post

"My father was lucky. He got back most of his functioning after the brain bleed, although he can play table tennis only while sitting down and can no longer go outside by himself because he is a fall risk. The doctors are pleased with the outcome, but I’m dismayed with the process. When the residents gave my father a stroke diagnosis, I needed someone to serve as an unbiased interpreter of the evidence, to recognize my knowledge of this particular patient and to ask about our values and goals. I needed someone to acknowledge that we faced a hard decision, that there were no guarantees and that it was ultimately our choice. Health-care systems can and must do a better job."

They said my dad was having a stroke. I wish I had been able to handle it better. - The Washington Post

How might we reimagine the end-of-life experience for ourselves and our loved ones? - Death on the ICU

"When I worked briefly as a Buddhist chaplain in a Medical ICU I was shocked by the suffering I watched every day as families anguished over what to do next.  There are no words to adequately describe an ICU death.  It is most often preceded by medical interventions that are barbaric – machines, wires, drugs, and pumps sustain a body until bereft family members can find a way to stop the aggressive medical treatment and let nature take its course, often feeling like they are committing a crime rather than releasing someone from prison.  The ICU is no place for siblings or children to have conversations about what a parent or loved one would have wanted at this point. It’s like trying to teach a drowning man to swim.  The die is cast....The pain I saw on the MICU was not just physical but the most excruciating emotional suffering I have ever witnessed.  And yet, that rare family that truly knew and understood the patient could firmly direct clinicians toward the end of life their loved one envisioned.  Most people (about 80%) want to die at home, yet 70% die in institutions.  Where is the disconnect? Why does this happen?  Not surprisingly, nearly 88% of physicians say they would not want the aggressive end-of-life care their patients endure.  How can we bring our culture back from the brink of often brutal over-treatment to the death most people want – a mostly pain-free natural ending at home with loved ones? "

OpenIDEO - How might we reimagine the end-of-life experience for ourselves and our loved ones?

How might we reimagine the end-of-life experience for ourselves and our loved ones? - Death on the ICU

"When I worked briefly as a Buddhist chaplain in a Medical ICU I was shocked by the suffering I watched every day as families anguished over what to do next.  There are no words to adequately describe an ICU death.  It is most often preceded by medical interventions that are barbaric – machines, wires, drugs, and pumps sustain a body until bereft family members can find a way to stop the aggressive medical treatment and let nature take its course, often feeling like they are committing a crime rather than releasing someone from prison.  The ICU is no place for siblings or children to have conversations about what a parent or loved one would have wanted at this point. It’s like trying to teach a drowning man to swim.  The die is cast....The pain I saw on the MICU was not just physical but the most excruciating emotional suffering I have ever witnessed.  And yet, that rare family that truly knew and understood the patient could firmly direct clinicians toward the end of life their loved one envisioned.  Most people (about 80%) want to die at home, yet 70% die in institutions.  Where is the disconnect? Why does this happen?  Not surprisingly, nearly 88% of physicians say they would not want the aggressive end-of-life care their patients endure.  How can we bring our culture back from the brink of often brutal over-treatment to the death most people want – a mostly pain-free natural ending at home with loved ones? "

OpenIDEO - How might we reimagine the end-of-life experience for ourselves and our loved ones?

Quote from Tagore

"Death is not extinguishing the light. It is putting out the lamp because the dawn has come."
Rabindranath Tagore

W.S. Merwin: "Separation 1913"

Separation 1913

Your absence has gone through me
Like thread through a needle.
Everything I do is stitched with its color.

Wednesday, May 11, 2016

Music-thanatology: The soundtrack to life's final moments — NewsWorks

 Jennifer Hollis is "what's called a music-thanatologist. She plays the harp and sings for dying patients. If life was a movie, Hollis plays the music during the closing credits."

Music-thanatology: The soundtrack to life's final moments — NewsWorks

How You'll Probably Die, Visualized

"Ever wondered how things might come to an end? This chart visualizes the nation’s cause-of-death data from the Centers for Disease Control and Prevention to give you a better idea. Created by Nathan Yau from Flowing Data, the interactive visualization shows how cause of death across 20 different categories varies according to age, gender and race. The height of each colored chunk shows the percentage of people dying because of a particular cause at that age. It’s based on data from between 2005 and 2014, so it’s fairly up-to-date."

How You'll Probably Die, Visualized

HUMANS OF NEW YORK: A Mother on Her Son's Cancer

"I joke that this whole experience has made me an involuntary Buddhist. When you live in a world of one thousand seizures, you have no choice but to live in the present. You’re jolted out of your mind every few minutes. And you learn about compassion. Having a special needs child has opened me up to the compassion of other people. There are so many people who are willing to help. When we first discovered the tumor, I sent Sterling’s scans to every hospital. I can’t tell you how many doctors gave me their time and didn’t charge a thing. Zero billable hours. Can you believe it? It was like going snorkeling for the first time, and discovering a whole new world of color that I didn’t know existed.”

HUMANS OF NEW YORK

HUMANS OF NEW YORK: Doctors Mourn Children Who Die of Cancer

“Some of my colleagues tell me they can’t imagine working in pediatrics. Millions of years of evolution have conditioned us to respond to the cries of a child. We can’t bear to see a child in pain. And once we have children of our own, it makes the work even more difficult. We all handle it differently, but everyone cries at some point. Not in front of the patient, but everyone cries. Every few months we have a ceremony where we mourn all the children who have passed away. We have a slideshow. We make cards. We talk about them and remember them together. We acknowledge that we all feel the loss. And even though our grief is not as significant as the family’s, it’s not trivial either. And we must take time to acknowledge that. Or all of us will burn out.”


HUMANS OF NEW YORK

Monday, May 9, 2016

Sunday, May 8, 2016

Her secret history: I discovered my mother’s digital life after her death | Life and style | The Guardian

This touching story about a woman who inherited her late mother's laptop includes this lovely passage.

"And that’s how the last day of my mom’s life began: just the two of us. I held her hand and watched her labored breathing. Looking at her, I thought about how I must have slept on her chest as a baby, taking in her warmth and feeling so safe in her arms. That afternoon, my mother took her final breath. My two brothers and I left my father sobbing next to her hospital bed, which had been set up in the living room, and sat next to each other on a bench outside, watching the day’s final rays of sunlight bathe the front yard. After days and weeks of grim winter darkness, the scenery was radiant. I couldn’t help but think my mom had become part of the beauty around us. The light seemed more intense, the beauty more vibrant because she was there in it. I was surprised that such a feeling of peace could be felt in the midst of that horrifying loss. I still cling to it and try to revive it in my memory."

Her secret history: I discovered my mother’s digital life after her death | Life and style | The Guardian

Saturday, May 7, 2016

Doula for the dying: Connecting birth and death | PhillyVoice

"I am a doula. I am also a hospital chaplain. In holding space for birthing and dying, I’ve come to see one thing clearly. Standing with an open heart in the presence of birth is very much like standing with an open heart in the presence of death."

Doula for the dying: Connecting birth and death | PhillyVoice

Friday, May 6, 2016

How to have a great conversation with someone who is going to die | Life and style | The Guardian

"Software developer Pieter Hintjens has been diagnosed with terminal cancer at the age of 53. He will be opting to end his own suffering through euthanasia, which has been legal in Belgium since 2002. He has three children, aged twelve, nine and five. In a final article on his website, he has outlined a protocol for dying, including these thoughts on how to have a conversation with someone you know is going to die."

How to have a great conversation with someone who is going to die | Life and style | The Guardian:

How To Avoid A Family Feud At The End Of A Loved One's Life

 "Sometimes such deathbed battles are not so much about the dying person’s wishes as they are a reenactment of old resentments and ancient rivalries. Bitter fights arise when adults under pressure regress to childhood sibling roles: the smart one, the dumb one, the bossy one, the martyr, the peacemaker. In the emotional turmoil of the dying time, rather than address the issue, they blame each other, the doctors, the nursing staff, or hospice for not doing more. Without prior conversations with everyone who may be in the patient’s room at the end of life, including out-of-town relatives, it is unrealistic to expect families to come to a quick, unified decision that satisfies everyone. The best way to avoid such outcomes when people can no longer state their own wishes is for every competent adult to assume personal responsibility to make decisions and open a conversation with anyone likely to be in the room at the end of life. The next step is to complete, then regularly review advance directives. Review these documents on birthdays and after a major life event such as a serious illness, marriage, divorce, or death. Identify and educate at least two healthcare agents about your wishes, and give copies of the directive to your doctors, lawyer, agents, and anyone likely to be in the room."


How To Avoid A Family Feud At The End Of A Loved One's Life

How to plan for a good death

"Sheila [Kitzinger] spent her life campaigning for autonomy and choice in childbirth and challenging the medicalisation of birth. She pioneered birth plans to support women in making their own decisions. When it came to dying, she expressed the same values of choice and control, and she planned ahead. She appointed one of our sisters, Tess, with lasting power of attorney for health and welfare and also wrote an advance decision. This preparation was invaluable in ensuring that her choices were respected and in allowing her to die at home as she wanted."

How to plan for a good death | Life and style | The Guardian

The Mourner's Bill of Rights

The Mourner's Bill of Rights by Alan D. Wolfelt, Ph.D. Though you should reach out to others as you do the work of mourning, you should not feel obligated to accept the unhelpful responses you may receive from some people. You are the one who is grieving, and as such, you have certain "rights" no one should try to take away from you. The following list is intended both to empower you to heal and to decide how others can and cannot help. This is not to discourage you from reaching out to others for help, but rather to assist you in distinguishing useful responses from hurtful ones. 1. You have the right to experience your own unique grief. No one else will grieve in exactly the same way you do. So, when you turn to others for help, don't allow them to tell what you should or should not be feeling. 2. You have the right to talk about your grief. Talking about your grief will help you heal. Seek out others who will allow you to talk as much as you want, as often as you want, about your grief. If at times you don't feel like talking, you also have the right to be silent. 3. You have the right to feel a multitude of emotions. Confusion, disorientation, fear, guilt and relief are just a few of the emotions you might feel as part of your grief journey. Others may try to tell you that feeling angry, for example, is wrong. Don't take these judgmental responses to heart. Instead, find listeners who will accept your feelings without condition. 4. You have the right to be tolerant of your physical and emotional limits. Your feelings of loss and sadness will probably leave you feeling fatigued. Respect what your body and mind are telling you. Get daily rest. Eat balanced meals. And don't allow others to push you into doing things you don't feel ready to do. 5. You have the right to experience "griefbursts." Sometimes, out of nowhere, a powerful surge of grief may overcome you. This can be frightening, but is normal and natural. Find someone who understands and will let you talk it out. 6. You have the right to make use of ritual. The funeral ritual does more than acknowledge the death of someone loved. It helps provide you with the support of caring people. More importantly, the funeral is a way for you to mourn. If others tell you the funeral or other healing rituals such as these are silly or unnecessary, don't listen. 7. You have the right to embrace your spirituality. If faith is a part of your life, express it in ways that seem appropriate to you. Allow yourself to be around people who understand and support your religious beliefs. If you feel angry at God, find someone to talk with who won't be critical of your feelings of hurt and abandonment. 8. You have the right to search for meaning. You may find yourself asking, "Why did he or she die? Why this way? Why now?" Some of your questions may have answers, but some may not. And watch out for the clich├ęd responses some people may give you. Comments like, "It was God's will" or "Think of what you have to be thankful for" are not helpful and you do not have to accept them. 9. You have the right to treasure your memories. Memories are one of the best legacies that exist after the death of someone loved. You will always remember. Instead of ignoring your memories, find others with whom you can share them. 10. You have the right to move toward your grief and heal. Reconciling your grief will not happen quickly. Remember, grief is a process, not an event. Be patient and tolerant with yourself and avoid people who are impatient and intolerant with you. Neither you nor those around you must forget that the death of someone loved changes your life forever. Copyright 2007-2013, Center for Loss and Life Transition"
GriefWords.com

Mindy Stricke on Her Mother's Last Days

"I had a considerable amount of anticipatory grief. Not only over the several years of her declining health, but especially over those last seven weeks of her life. As soon as Mother’s Day passed, the busy work started: updating finances, advance directives, wills, funeral planning. I will never forget the day I watched her choose her casket and urn. Sitting in the selection room, she had a look on her face I had not seen before; a combination of peace and pain. She was tired of the struggle, and yet she knew that her peace meant our pain. That was one of the hardest days of my life. It was her wish to die at home so her doctor educated us on what to expect and how to keep her comfortable. On June 26th, she became bedridden but was still completely lucid and we were still checking off her ‘to-do-before-I-die’ list. She had me email distant friends and relatives to thank them for their love and wonderful memories and we called the family home to say goodbye. We even had a minister come to the house so she could have last communion with her husband and four children—equal parts beautiful and emotional. I never left her side. She was having more difficulty sleeping at night due to increasing discomfort, and I was sleeping in her bed with her, so we talked to distract her and pass the time. One night, I found myself confessing every “bad” thing I had ever done in my life, and found that she already knew about most of them! We laughed until we cried, and then she talked to me about dying. She wasn’t afraid, because she already knew where she was going."


Irish Cape — Mindy Stricke

Thursday, May 5, 2016

Hoping to call the shots from your death bed? There’s a app for that | Vancouver Sun

"Your 87-year-old father is lying in a hospital bed breathing with the help of a ventilator and the doctor say he’s unlikely to recover. Your sister insists on doing everything possible to keep him alive. You’re sure Dad wouldn’t want that. Can an iPhone app developed in Vancouver settle the argument? Jamie Shafer, a self-described serial entrepreneur, says his app My Own Voice was created with this scenario in mind."

Hoping to call the shots from your death bed? There’s a app for that | Vancouver Sun:

Angela Miller: 7 Things I've Learned Since Loosing a Child

 "Though I will grieve the death of my son forever and then some, it does not mean my life is lacking happiness and joy. Quite the contrary, in fact, though it took awhile to get there. It is not either/or, it’s both/and. My life is more rich now. I live from a deeper place. I love deeper still. Because I grieve I also know a joy like no other. The joy I experience now is far deeper and more intense than the joy I experienced before my loss. Such is the alchemy of grief. Because I’ve clawed my way from the depth of unimaginable pain, suffering and sorrow, again and again– when the joy comes, however and whenever it does– it is a joy that reverberates through every pore of my skin and every bone in my body. I feel all of it, deeply: the love, the grief, the joy, the pain. I embrace and thank every morsel of it. My life now is more rich and vibrant and full, not despite my loss, but because of it. In grief there are gifts, sometimes many. These gifts don’t in any way make it all “worth” it, but I am grateful beyond words for each and every gift that comes my way. "

7 Things I've Learned Since Loosing a Child:

Wednesday, May 4, 2016

Tuesday, May 3, 2016

Beth Israel Deaconess examines mistakes made after patients die

 "The hospital has created a 20-person working group to focus on the aftermath of a patient’s death. It’s part of a broader effort to reduce “insults to dignity” — mistakes that cause emotional harm, but haven’t traditionally been considered medical errors. For example, after another woman died at the hospital, her family got to the funeral home and couldn’t find her pocketbook, said Patricia Folcarelli, senior director of patient safety. It turned out the pocketbook was still in the hospital morgue. In another case, the hospital failed to complete an autopsy that a family had requested, she said. These cases happen with low frequency, but have high impact, Folcarelli said. “If something about the death doesn’t sit well with the family members, they’re at higher risk of complicated grief” — when grief gets “stuck” or turns into depression, added Kathleen Rimer, the hospital’s director of spiritual care."

Beth Israel Deaconess examines mistakes made after patients die

Monday, May 2, 2016

What a nurse learned from a patient who wasn't afraid to die

 "She stopped all medical treatment except for comfort measures and entered hospice care in her home. She lay in her custom bed and looked out the windows of her sun-filled bedroom. She took pain medications as needed. She laughed and enjoyed the company of others. She had a wonderful portrait taken of her family in funny Easter bonnets. It was such a joy to be with her; her daughter never had any problem getting volunteers to help with her care. We all happily took shifts. And then, one morning, she quietly passed away....I always thought, If I had received Sally’s diagnosis, I would have fought it with every medical tool available — chemo, radiation, clinical trials of any kind. I wouldn’t have spent my last months in a sunny room on a soft bed; I would have been hooked up to tubes, puking my guts out. I wouldn’t have been afraid of anything. Bring it on. Anything, that is, except death. After her death, I realized that I was the one blinded by fear. Sally could clearly see the outcome she wanted: as much time as possible to feel well and enjoy her family; a calm and dignified death. And, because of her bravery, those are the things she got."


What a nurse learned from a patient who wasn't afraid to die

The Liz Army | Hacking the hospital death

A beautiful essay on helping a friend to a quiet, loving death space.

"The medical team gave Jim medication to take away any pain he may experience. They removed his breathing tube, and unhooked all machines except for the one monitoring his heart beat. Quickly, his bed was moved to the sunny room where his friends, including myself, were waiting outside by the window. As soon as the medical team cleared out we poured in. One person set up the speakers. Another friend was ready with the iPod. The door to the medical area was closed. The rest of us swarmed in around him: hands placed on his hands, his legs, his feet. The room was small, so some hovered around the perimeter and in the doorway to the open air. We fell silent and the first song began. Nearly every other song on Jim’s iPod was a Christmas song, so I wasn’t surprised when “I’ll Be Home For Christmas” started playing through the speakers. For decades, Jim gifted friends with his mix CDs of obscure Christmas songs he had spent the previous year curating. This is perfect, I thought, while I cried and laughed at the same time. Unburdened by machines his body began sinking into the bed. As the body shifted and settled I said, “This is natural,” mostly to remind myself that what I was witnessing was part of the cycle of life, much like a baby crying when born."

The Liz Army | Hacking the hospital death

Sunday, May 1, 2016

How can we improve the end-of-life care for our loved ones?

Deathbed Singers, Threshold Choirs, Grow To Comfort Sick And Dying

"Always face the person in the chair. Sense their breath, the rising and falling of the lungs, the blood’s flush on the cheeks. Watch the loosening and tightening of the muscles, the movement of the eyelids, how the hair on their arms straightens up. Don’t stand out. Speak softly. Blend in with the voices. This was the advice of Ellen Synakowski to members of the Washington, D.C., Threshold Choir, only a few months into its existence. Their job: to use song to comfort the dying through the end of life. As if repeating a mantra, they sang in unison as they rehearsed: “It’s alright, you can go/ Your memories are safe with us/ It’s alright, you can go/ Your memories are safe with us.”"

Deathbed Singers, Threshold Choirs, Grow To Comfort Sick And Dying

5 Ways to Use Music at the End of Life

"Music has a rich and valuable role to play at the end of life. When we are involved in someone’s dying process, music can add a richness to this mysterious, often painful, and very often beautiful experience. Music can strengthen relationships and invite presence. It doesn’t have to be about having the best voice, or playing an instrument, or having music training. Music care is about relationship. Introducing music into a care relationship can be intimidating for some, although it doesn’t need to be. Whether you are a health care provider, family member of a person who is dying, or currently receiving palliative care yourself, music can find its way into the dying process and help make it more meaningful."

5 Ways to Use Music at the End of Life

We Talk So Much About ‘Natural Birth’—When Can We Discuss Natural Death? | TIME

 "Poised as I am between the beginning and the end of life, I had to ask myself, why do people talk so much about natural birth but not much about natural death? My friends with babies spent inordinate amounts of time discussing how and where to have them. Should they give birth in a hospital or in a kiddie pool? Should they use pain killing drugs or not? Google “natural birth,” and you’ll be treated to YouTube videos of moms popping out kids in the woods, heated debates about homebirth’s merits and dangers, and tons and tons of books, blogs, and so on. A Google search on “natural death” doesn’t turn up much. Searching “hospice” brings up boilerplate readings, more about spiritual advice than concrete decision-making about end of life care."

We Talk So Much About ‘Natural Birth’—When Can We Discuss Natural Death? | TIME

At Life's Last Threshold, Choir Brings Comfort : NPR

"The Threshold Choir brings music to those on the threshold of life — people who are dying. The first group started about a decade and a half ago. Now there are choirs in 120 cities, and even a few countries."

At Life's Last Threshold, Choir Brings Comfort : NPR

Coping with grief & loss - How to grieve - Grieving process & stages of grief - Tatler

"Grief is the natural response to the physical loss of someone we love. 'Pain is the agent of change, pain is what forces you to adjust to this new reality. And it is also through pain that you heal,' explains Julia Samuel MBE, a psychotherapist and founder patron of the charity Child Bereavement UK, which helps children who have experienced a bereavement, as well as adults who have lost a child. When we do not allow our grief to surface, when we suppress it, there can be long-term implications for our mental health. 'If you cut out pain, you also cut out your capacity to feel joy,' says Julia. 'So your whole capacity to feel can be shortened, and your openness to engage with all aspects of life can be diminished.' This was a message I heard from all the grief specialists and therapists I spoke to, including Christine Jensen, who deals specifically with unblocking past trauma. 'Feeling grief makes it more possible to feel other emotions such as love, joy and excitement. It deepens our relationships and connections with others.' "


Coping with grief & loss - How to grieve - Grieving process & stages of grief - Tatler