08/31/12

A push to encourage end-of-life discussions

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By Kay Lazar

Rabbi Howard Kummer spent years guiding others through wrenching life-and-death decisions. As a chaplain at Newton-Wellesley Hospital, he ministered to patients tethered to life support machines, and would later tell his wife he never wanted to be kept alive that way.

But he did not get around to discussing his feelings with their three grown children, even after he was diagnosed with a brain tumor.

Then he had a catastrophic brain hemorrhage that left him near death, and his children were unprepared. They hesitated when a physician suggested stopping aggressive treatment.

“I knew what he wanted,” said his wife, Nancy. “I had had this discussion many times with him, but the kids hadn’t and they weren’t ready to let go.”

With death and dying, most Americans engage in a conspiracy of silence, surveys show, failing to discuss their final wishes until it is too late. A new Massachusetts-based coalition aims to change that.

Called The Conversation Project, the national campaign encourages open and honest discussions among families and friends about how they want to live life at the end, so that their wishes will be followed.

There have been other smaller-scale efforts to spark discussions among families and with doctors, but The Conversation Project has big financial backing from foundations and big names, including Dr. Don Berwick, former head of the Medicare program, and former Boston Globe columnist Ellen Goodman, a winner of the Pulitzer Prize.

The effort also has a partnership with ABC News.

A “starter kit” on the project’s website helps jumpstart end-of-life conversations. It asks visitors to answer this question: “What matters to me at the end of my life is _____.”

It suggests gentle ways for people of all ages to prompt a conversation with family or friends, by saying, for instance, “I need your help with something.” And it describes issues for people to think and talk about, from the level of medical interventions they might want, to a primer about legal documents that stipulate a person’s wishes.

The project was cofounded by Goodman, who spent a career communicating other people’s stories but neglected to have a detailed conversation with her mother about her preferences.

“I knew my mother’s attitudes in the most general sense,” she said. “But I never thought to ask my mother, for instance, where on the continuum are you, about being afraid of not getting enough care and getting too much care.”

Goodman said that because they had not had those discussions before her mother was incapacitated from dementia, she was torn while making complex decisions for her medical care.

Goodman’s mother died six years ago.

The project’s website suggests people have an ongoing conversation, not one that happens in one sitting. Writing a letter can be one way to start the conversation.

“DON’T PANIC — IT’S OK,” is how Karen Boudreau, a family physician, started a hand-written letter to her family when she became involved with The Conversation Project during its formation.

At the time, she was a senior vice president at the Institute for Healthcare Improvement, a Cambridge organization that is collaborating on the project.

Boudreau’s letter advises her family members to not worry or feel guilty if they have to make decisions for her care that they had not previously thought to discuss.

“If you’re faced with a snap decision, don’t panic — choose comfort, choose home, choose less intervention, choose to be together, at my side, holding my hand, singing, laughing, loving, celebrating and carrying on,” wrote Boudreau, now chief medical officer at Boston Medical Center’s HealthNet Plan, and, at age 51, in good health. “I will keep loving you and watching you and being proud of you.”

The Kummer children, including one now a rabbi herself, ultimately chose less intervention, too, after their 67-year-old father’s brain hemorrhage.

They signed a form to not have him resuscitated if his heart failed.

“In a very short time, we put together a nice little ceremony,” said Nancy Kummer, now 81 and living in Dedham. “One of them talked to him, one sang songs to him, one read some psalms to him, each in his or her own way, and then we said our goodbyes.”

Yet 13 years after her husband’s death, Kummer admitted that she has not had an in-depth conversation with her children — now ages 52, 51, and 47 — about her end-of-life wishes.

Nancy Kummer, a former social worker, used to counsel people with terminal illnesses and now lives in a retirement community where, she said, she is “surrounded by increasing fragility and illness and vulnerability so it’s in my face all the time.”

Still, she is having a hard time starting that conversation.

“There is a human tendency,” she said, “to postpone uncomfortable or unpleasant tasks.”

Getting Americans to put their end-of-life wishes in writing has not fared much better.

More than three-quarters of those surveyed said it is important to express their written preferences, yet fewer than 1 in 4 have done that, according to a recent survey by the California HealthCare Foundation.

But momentum may be building. Since its launch in October 2008, there has been steadily growing traffic on the website Engage with Grace, an online campaign aimed at prompting end-of-life discussions, said cofounder Alexandra Drane, who runs a Danvers software company focused on health care.

Her firm particularly seems to be hearing from a lot of baby boomers who have had bad experiences with decision-making in their parents’ deaths because they failed to have meaningful conversations beforehand, and now want to help others avoid that mistake.

“We are coming across more friends, and kindred spirits,” Drane said, “who have decided this will be their mission.”

Complete Article HERE!

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08/28/12

Meditation – I Have A Rendezvous With Death

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I Have A Rendezvous With Death by Alan Seeger

I have a rendezvous with Death
At some disputed barricade,
When Spring comes back with rustling shade
And apple-blossoms fill the air—
I have a rendezvous with Death
When Spring brings back blue days and fair.

It may be he shall take my hand
And lead me into his dark land
And close my eyes and quench my breath—
It may be I shall pass him still.
I have a rendezvous with Death
On some scarred slope of battered hill
When Spring comes round again this year
And the first meadow-flowers appear.

God knows ’twere better to be deep
Pillowed in silk and scented down,
Where Love throbs out in blissful sleep,
Pulse nigh to pulse, and breath to breath,
Where hushed awakenings are dear…
But I’ve a rendezvous with Death
At midnight in some flaming town,
When Spring trips north again this year,
And I to my pledged word am true,
I shall not fail that rendezvous.

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08/25/12

Cemetery Art – 8/25/12

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Some random photos.

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08/24/12

Deathbed Visions and Escorts

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by Thomas B West

Deathbed visions are apparitions; that is, appearances of ghostly beings to dying people near the time of their death. These beings are usually deceased family members or friends of the one who is dying. However, they can also be appearances of living people or of famous religious figures. Usually these visions are only seen and reported by the dying person, but caretakers and those attending dying people have also reported witnessing such apparitions. In the majority of these cases, the apparition came to either announce the imminent death of the individual or to help that person die. In the latter situation they act as escorts to dying people in the process of passing from this life to the next.

Visions at the time of death and announcements or omens of impending death, as well as escorts for the dead, are part of many cultures and religious traditions stretching back through antiquity. The religious motif of the soul making a journey from this life through death to another form of existence, whether it be reincarnation or to an eternal realm, is commonly found in many religions throughout history.

Shamans from many native cultures were adept at journeying from the land of the living to the land of the dead and were thus able to act as guides for those who were dying. Hermes, the Greek god of travel, was also known as the Psychopompos, the one who guided the soul from this life to Hades, and the realm of dead. Certain religious traditions have elaborate rituals of instruction for the soul at the time of death. The Egyptian Book of the Dead and the coffin texts of ancient Egypt gave detailed instructions for the soul’s journey to the next life. Similarly, by use of the Bardo Thodol, or Tibetan Book of the Dead, Tibetan Buddhist monks have guided the souls of dying people through death to their next incarnation. In the Christian tradition it has been guardian angels that have acted as the soul’s guide to paradise. The ancient hymn, “In Paradisum,” invoking the angels to escort the soul to heaven, is still sung at twenty-first-century Roman Catholic funerals.

Christianity’s belief in resurrection and the concept of a communion of saints, that is, the continued involvement of the dead with the spiritual welfare of the living, is reflected in the historical accounts of deathbed visions in the West. Third-century legends about the life of the Virgin Mary recount Christ’s appearing to her to tell her of the approaching hour of her death and to lead her into glory. In the hagiography of many early Christian martyrs and saints, impending death is revealed by the visitation of Christ, Mary, or another saint who has come to accompany the dying into heaven. This tradition is carried over into early historical records. The eighth-century English historian Bede wrote of a dying nun who is visited by a recently deceased holy man telling her that she would die at dawn, and she did. Medieval texts such as the thirteenth-century Dialogue of Miracles by the German monk Caesarius of Heisterbach recount similar stories, but always within a theological framework.

In the seventeenth century treatises began to be published specifically on the phenomena of apparitions and ghosts. By the nineteenth century specific categories within this type of phenomena were being described. For instance, apparitions began to be distinguished between those seen by healthy people and those seen by the dying. It was noted that when the dead appeared to the living, it was usually to impart some information to them such as the location of a treasure, or the identity of a murderer. However, when an apparition was seen by a dying person, its intent was almost always to announce the impending death of that individual, and often to be an escort for that death.

Early in the twentieth century, the doctor James H. Hyslop of Columbia University, and later Sir William F. Barrett of the University of Dublin, researched the deathbed visions of dying people. They were particularly interested in what became known as the “Peak in Darien” cases. These were instances when dying persons saw an apparition of someone coming to escort them to the next world whom they thought to be still alive and could not have known that they had preceded them in death.

In 1961 the physician Karlis Osis published Deathbed Observations of Physicians and Nurses. In it he analyzed 640 questionnaires returned by physicians and nurses on their experience of observing over 35,000 deaths. Osis refers to the deathbed visions of dying people as hallucinations because they cannot be empirically verified. He categorized two types of hallucinations: visions that were nonhuman (i.e., nature or landscapes), and apparitions that were of people. His work confirmed previous research that the dying who see apparitions predominantly see deceased relatives or friends who are there to aid them in their transition to the next life. With the assistance of another physician, Erlandur Haraldsson, Osis conducted two more surveys of physicians and nurses: one in the United States and one in northern India. The results of these surveys confirmed Osis’s earlier research on deathbed hallucinations with the exception that there were more apparitions of religious figures in the Indian population.

These studies and the extensive literature on this subject confirm that throughout history and across cultures, dying people often experience apparitional hallucinations. What significance these deathbed visions have depends on the worldview with which one holds them. In this data those with religious or spiritual beliefs can find support for their beliefs. Parapsychological explanations such as telepathy or the doctrine of psychometry, whereby environments can hold emotional energy that is received by the subconscious of dying people, have all been advanced to explain apparitions at the time of death. The Jungian psychoanalyst Aniela Jaffe viewed apparitions, including those of dying people, as manifestations of Carl Jung’s transpersonal views of the psyche and, therefore, a validation of Jungian metapsychology. Indeed both the visions as well as the apparitional hallucinations described by Osis can be attributed to a number of medical causes, including lack of oxygen to the brain. Ultimately the research into the phenomenon of deathbed visions, while confirming that such events are common, offers no clear explanations.

Complete Article HERE!

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08/22/12

Hump Day Humor – 8/22/12

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Click on the thumbnail images below to view the comics.

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08/21/12

The GroundSwell Project Review

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More marvelous news! The second amazing review of The Amateur’s Guide To Death and Dying; Enhancing the End of Life has appeared in as many days.

The Amateur’s Guide to Death and Dying
Review by Emilie Collyer

‘None of the hard times I’ve seen, and I’ve seen plenty, lasted forever. Even this dying business will be over one day. I’ll just wake up dead one morning and that will that. What can I tell you?’

So says Max, an 86 year old man dying from stomach cancer. He’s one of ten group members you’ll meet and get to know when reading The Amateur’s Guide to Death and Dying.

The book is written by Richard Wagner who runs a non profit organisation called PARADIGM Programs Inc whose mission is ‘enhancing the end of life’. One of the main initiatives of the organisation is a ten week structured support program that focuses on death and dying. It is primarily targeted at people diagnosed with a terminal illness, but anyone can do the course.

The Amateur’s Guide to Death and Dying is a ‘workbook’ that takes the reader through the course. There are ten chapters that cover a wide range of territory. It is presented as a combination of group sessions, homework tasks and reflection exercises. There is a detailed blurb about each person and from then on we ‘hear’ from them in the first person, as if they are speaking directly to us in a group situation. They are fictional creations, but based on amalgams of real people. Wagner evokes their personalities well. I felt like I was hearing from ten distinct voices.

The content is comprehensive. We start with a discussion about perceptions of death, including why it still seems to be a taboo subject for so many people. Raul, 18, has polycystic kidney disease. He says how sick he is of ‘fightin’ something I can’t win.’ He hasn’t told his parents about attending the group because he knows how scared they are to accept the fact that he won’t live a long life: ‘They want me to keep praying to all these saints for some kinda stupid miracle. There are so many saints I can’t even remember all their names.’

From there, chapters move through many subjects and tasks including: writing your own obituary, legal, medical and financial matters, sexuality and body image for people who are dying, spirituality and belief, what happens to the body when we die, and the question of assisted, or pro-active dying.

The book is not always an easy read. It opens up questions about our own lives, including regrets and lost chances: ‘I haven’t done anything extraordinary, never won an award, never had my picture in the paper, never went to college, never even had a real job. I’m just an old woman who hasn’t anything to show for her life. And that makes me sad,’ says Janice, 62.

Reading such personal and intense stories has a significant emotional impact. I had to read slowly and take time out on occasion. And of course each story, task and provocation is designed to bring to the surface our own fears, hopes and regrets about death. This is a stated goal of the book and Wagner’s work in general. He is seeking a radical shift in how we perceive dying, specifically in terms of integrating it more consciously into every day life.

It’s not just about increasing awareness. Wagner believes we can live more full lives by embracing death. One of his motivations for creating the program and the book was because: ‘… the wisdom people come to during the dying process often died with them. There simply wasn’t a medium for collecting this abundant wisdom and thus it was frequently lost.’

There is a satisfying narrative arc to the book. Each of the participants comes to a sense of peace and acceptance about their situation. Many have renewed hope and vigour. ‘I feel like I’ve been able to look death in the face these past ten weeks and I didn’t flinch. So maybe, just maybe, death is not so foreboding after all,’ says Kevin, 39.

Some of the final statements in the evaluation section are a little pat. The book allows a neatness and sense of conclusion that is generally lacking in life with all its messiness. This is a minor point though, as the book’s content never shies away from the difficult and the unresolved.

The Amateur’s Guide to Death and Dying is a useful and practical tool for any person approaching their own death, or the death of a loved one and would make a valuable resource for health and community organisations working in this area.

Spending focussed time meditating on the end of life is not something we do often. It’s confronting to face our own mortality, but there’s something vital, even exhilarating about the brief moments of insight that can come. I’d recommend The Amateur’s Guide to Death and Dying to anyone seeking to engage with questions about death and the meaning of life.

Full Review HERE!

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