A Community That Supports Death and Dying

“Part of our lifelong practice is you talk openly – and a lot – about death,” Bill explained. “It clears the air. We’re going to die, and we have a lot of times when we visit that fact.”

In fact, one of the most widely recognized texts of the Tibetan Buddhist tradition is the Tibetan Book of the Dead.

“It says that the transition at the moment of death is just that – purely a transition in which the consciousness leaves the body,” said Shambhalian Gerry Haase.

International Shambhala President Richard Reoch published a column in the Shambhala Times in 2012 encouraging members to keep their own “death book.”

“It’s a binder with a big yellow cover with big, bold black letters that says DEATH,” said Bill. “You open it up and it’s everything you need to know for Richard. All the contacts, all the advanced directives, all the insurance, the will, all the people to call. We should all get it done – we should each have our death book.”

Shambhala

A doctor focused on dying finds lessons for better living

"Last year, 40-plus percent of Americans who died were enrolled in hospice. By some measures that’s great. But if you start looking at those numbers, fully a third of those people were in hospice for less than a week, which is really a problem for a number of reasons. So we’ve got a long ways to go....When someone asks me the question, I say palliative care is a multidisciplinary pursuit of quality of life. It doesn’t say anything about death or dying. It focuses on quality of life. And not in a positive spin, turn-that-frown-upside-down way. It’s real. Anyone who does work in hospice will tell you that, yeah, sure, it’s about death, sure, it’s about suffering, but these are the foils for happiness, for beauty, for meaning making. That’s the full equation we need to get across to people. That somehow living and dying aren’t opposed. They’re absolutely entwined with each other. And that frame shift is really novel. Palliative care is all about quality of life;a bunch of disciplines working together to support the patient and family, to eke out the best quality of life possible.

A doctor focused on dying finds lessons for better living

Hope: A documentary that tells the inspiring stories of those who are moving beyond grief to embrace life.

How My Grandmother’s Death Made Me Love Myself Again – The Wisdom Daily

"When my grandmother passed away, I didn’t lose that connection. The day I decided to really think of her, mourn my losses and cry over her legacy, that was the day I was able to incorporate her back into my life. Her spirit stayed with me and her love guided my way. Her love guided me all the way to finding love for myself."

How My Grandmother’s Death Made Me Love Myself Again – The Wisdom Daily:

My husband was dying, but his mind was still good. It was hard to let go. - The Washington Post

 "End-of-life issues prompt strong responses. All I know, now, is that until you live through it, you have no idea how you will feel. And that there are no right answers — only bad choices and worse choices."

My husband was dying, but his mind was still good. It was hard to let go. - The Washington Post:

Symposium: Death and Dying Beyond Belief

Humanists of Linn County and the Iowa Atheists and Freethinkers are pleased to announce a half-day symposium titled, "Death and Dying Beyond Belief." This is a cooperative effort between the Eastern and Central Iowa Coalitions of Reason and focuses on various death and dying topics including death with dignity and end of life preparations, hospice care from a non-theist perspective, memorial services for non-theists, personal stories of facing death without belief in a god or afterlife, and how death and grieving differs for non-theists.

Death with dignity, end of life, grief, health care, religious exemptions, are all issues that have been part of the discussion in our group, almost from the moment we organized just over a year ago. It is clear that these are issues of concern for many non-theists in Iowa and presumably, the country,” said Roxanne “Rocky” Gissler, the Coordinator for Eastern Iowa Coalition of Reason. “We were inspired to organize this symposium after reading an article in the Des Moines Register about the Death with Dignity legislation and Iowa Atheists and Freethinkers member, Jen Holman who is terminally ill. When we learned that the time allowed for the public to address the committee on this legislation was dominated by religious clergy and advocates opposed to the death with dignity legislation and that many non-theists and terminally ill individuals were not given the opportunity to speak, we knew we had to become involved.”

Gissler further explained, “We asked the Iowa Atheists and Freethinkers if they would like to co-sponsor this symposium and were delighted when that accepted. It is a true joint effort between both the Eastern Iowa and Central Iowa Coalitions of Reason. This symposium is the first of what we hope is a series of educational forums presented jointly by the Coalitions dealing with all of these issues from a non-theistic perspective. There is a lot to talk about and a lot of work to be done.”

Confirmed speakers include:

State Representative Liz Bennett, who will speak on the Death with Dignity issue within the Iowa State Legislature.

Kay Becker: President of Compassion and Choices of Iowa. Kay is a member of First Unitarian Church of Des Moines and facilitator of the Death With Dignity Action Group at that church. She will give a presentation on what Compassion and Choices does and the importance of advanced planning and documents to aid this planning. She will also give an explanation of the Iowa Death with Dignity Act (HF65 and SF2051).

Peggy Fulton: Board-certified hospice and palliative care nurse, has cared for patients and families at the end of life. Seeing families, patients and medical staff all navigate thru the end of life processes, has brought a unique perspective to Peggy's nursing practice.

Kevin Bradley of the Final Exit Network (a world federation of Right to Die societies). Kevin is a writer, speaker, stress management counselor, the Executive Director of the Libertarian Party of Minnesota, and an interfaith minister ordained in the United Church of Christ. He grew up in Southern Minnesota and started college with plans to become a minister in the Lutheran Church—Missouri Synod, but those plans changed when his father died from lung cancer when Kevin was 21. He now refers to himself as a Humanist, agnostic, atheist, or non-theist, depending on your definition of those terms. He will give a presentation on what Final Exit Network does.

Dr. Hector Avalos: an atheist and Professor of Religious Studies at Iowa State University. His talk is titled, "Life and Death as An Atheist" and he will explain some of the different approaches to death that are found among non-believers, and discuss his own experiences with a life threatening illness.

Dr. Paul Knupp: Dr. Knupp's talk is titled "When Humanists Experience Death and Dying." Many of us, as Humanists, experience death and dying issues outside traditional faith supports. What are our options as Humanists? How do we celebrate life in the midst of death without a supernatural perspective? These questions and others will find delineation in this talk. Dr. Paul Knupp was an ordained United Church of Christ minister who celebrated hundreds of funerals over a 25 year career. Now a Humanist Chaplain, Dr. Knupp continues to celebrate funerals from a secular perspective.

Alan Diehl: Board member of Humanists of Linn County and former Evangelical associate pastor. Alan will be speaking on the topic, ”Life after Death? The Difference Between What People Believe and What the Bible Actually Says."

A Hospice Nurse

Heather is not brisk or efficient, as nurses in hospitals are. She is purposely inefficient, in fact. Most of the time when she visits patients, she doesn’t have much to do: she takes vital signs, she checks that there are enough supplies and medications in the house, she asks if old symptoms have gone away or new ones developed. If she were rushing, she could do all that in about five minutes, but her visits usually last an hour or more. Sometimes there is a complicated medical situation to take care of. Sometimes she does something non-medical that needs to be done, which is the hospice way—she might sweep a floor, she might heat up dinner. But, even when there’s nothing else to do, the idea is to be around longer, to chat, to sit close by, to put her hands on the patient’s skin as she goes about her checkup. Her visit may be the high point of the day for the patient, who may not be able to get out of bed, or for whoever is taking care of the patient, who may not have left the house or seen anybody else for a day or two; either or both of them may be going a little crazy and may badly need interruption or variety of any kind, ideally someone different to talk to. So Heather moves slowly; she sits down; she delays; she lingers.
Dying can be long and bewildering, lonely and painful, frequently undignified, and consumed by pressing and unpredictable and constantly changing and multiplying needs. It’s a relief to have someone around who understands what’s going on and what may happen next. On the other hand, when dying is long it becomes ordinary, just another kind of living, but one in which your friends may be gone and your children busy, or not busy enough. In that case, it can be a good thing to see someone who is not a member of your family; who comes from the world outside your illness; who has known you long enough to be familiar but not long enough to have heard your stories already; who wants to know where your pain is but doesn’t need you to explain everything; and who is there to take your vital signs but who behaves as though she might have come over to borrow a snow shovel or a couple of eggs.<

The Threshold - The New Yorker:

Mental Illness and Cancer: How One Affects the Other | Boston Magazine

 "There are unique complexities to treating someone with severe mental illnesses (SMI), such as schizophrenia and bipolar disorder. It is even more challenging if that individual becomes diagnosed with cancer. While anyone can get derailed by being medically sick, those with SMI are particularly vulnerable. The trigger of the physical disease can destabilize their already tenuous state of mind. They may become more confused, scared, or paranoid, and lack trust in the people caring for them. "

Mental Illness and Cancer: How One Affects the Other | Boston Magazine

A Culturally Competent Caregiver at the End of Life

Tacy Silverberg-Urian, RN, BSN, CHPN and author of “The Last Mile of the Way” writes:
 "I begin to develop a trusting relationship with my patients, which makes them comfortable with disclosing even more personal desires for their EOL vision. This process takes time and commitment on the part of the practitioner, with the goal of gathering information and determining how best to honor patients’ cultures, beliefs, and values.

 For example, I would honor and respect the request of a Cuban patient’s family to avoid using the term “hospice” in front of their loved one, my patient; for an Orthodox Jewish family, I would defer to their rabbi for their Halachic pathway; and for a lesbian family that may not be biologically connected, I would invite those close friends they define as family to their family meetings.

The process of becoming a culturally competent provider involves a never-ending commitment to learning, listening, and melding care with patients’ needs and requests. It involves knowing the people you serve so that your patients are not solely responsible for your education. In Culture and Nursing Care: Pocket Guide, Lipson and Steiger (2000) describe the process of working toward cultural competency as follows:

By itself, information about a specific culture/ethnic group does not make for culturally competent care, but neither can good care be provided in its absence. Many nurses believe that one does not need to know about a patient’s culture to provide good nursing care; good clinical skills and interpersonal sensitivity are enough. However, we believe that nurses must know something about their patients’ sociocultural backgrounds. It is too easy to inadvertently insult a patient when nurses act only on what they feel is correct, which is usually based on their own values and education.  

Cultural information by itself can interfere with care if nurses use it in a cookbook manner and attempt to apply cultural facts indiscriminately to a patient of a particular ethnic group. Cultural information can lead to stereotyping patients, particularly by nurses who lack self-awareness, are ethnocentric, or who fail to recognize the variability within any cultural group. Stereotyping differs from generalizing. When stereotyping, one makes an assumption about a person based on group membership without bothering to learn whether or not the individual in question fits that assumption. In contrast generalizing begins with an assumption about a group but leads to seeking further information about whether the assumption fits the individual.  

Thus, it is important to learn whether people consider themselves typical or different from others in their cultural group, because age, education, and individual personality influence how individuals express their culture. Because stereotyping comes from jumping to conclusions based on insufficient data or experience with a cultural group, it is useful to suspend judgement as long as possible. However, the paradox is that the more one learns about a different cultural group, the more one realizes how much more there is to learn.

Working in Diverse Communities as a Hospice Educator and Nurse | Hospice Times:

Ten Beliefs that Make Grief Support Groups Work

Ten Beliefs that Make Grief Support Groups Work | griefministerdotcom:

"Mourning is the outward behavior that is our response to the grief inside us. Grief is a process, a journey, not a one-time event. The work of grief is facilitated when the mourner is given comfort, support, encouragement, time and emotional space to grieve by those around them. Favorable life circumstances and loving support can help move the process along. Mourners can benefit from being with a peer group which has suffered similar emotions and experiences in loss. Mourners will often talk through or work through their concerns and fears if provided a safe, confidential, caring environment. Providing a family systems approach to grief support can be essential to the emotional healing of both grieving adults and children. A person’s feeling on the grief journey are their feelings. It isn’t up to us to talk them out of their feelings or to try to change the way they are feeling."

'via Blog this'

More people can ask for help in dying, but very few do

"Anyone who feared that making physician-assisted suicide legal would lead to an onslaught of assisted deaths can relax. A new study led by University of Pennsylvania bioethicist Ezekiel Emanuel finds that only a tiny fraction of the dying want help speeding up the process. However, Emanuel is concerned about the reasons people are choosing to die - horrible pain is sixth on the list - and says doctors remain less supportive of assisted suicide than the general public. He said the topic requires more study and that states that have legalized it should be keeping much better records of problems that patients encounter. Oregon, he said, does not consider it a complication if a patient regains consciousness after taking medication meant to kill him. While people die, on average, within 25 minutes after taking a lethal dose, the range extends to more than four days. Emanuel has a long interest in physician-assisted suicide, and he opposes it. He said he purposely included researchers on his team from the Netherlands and Belgium who support it."

More people can ask for help in dying, but very few do

The Amateur's Guide To Death & Dying

 "Our culture is notorious for ignoring and denying death. Consequently, most people live their dying in a vacuum of useful information and meaningful human interaction. Few get the chance to ask: Will my death be good? Will it be wise? Does it even matter? The marginal status our culture assigns to the end of life, with all its fear, anxiety, isolation and anger is inevitably what each of us will inherit in our dying days. The Amateur’s Guide To Death And Dying is a workbook that provides an opportunity to break free from the painful silence our culture imposes on death talk. "

MissionThe Amateur's Guide To Death & Dying | The Amateur's Guide To Death & Dying

How Should We Live This Moment

North East Ambulance Service offers end-of-life help - BBC News

Helping people get where they want to go -- an ambulance service will take people to hospice, if that is what they prefer, freeing up resources to be where they are most needed and helping people plan their end of life service needs.


"North East Ambulance Service's (NEAS) End of Life Transport scheme also helps patients plan where they want to go, such as a hospice, care unit, or home. ..Dedicated ambulances and specialist technicians, trained in end-of-life care, will operate the service..."Rather than detracting from the frontline, this service actually supports it by reducing the number of last minute calls to 999, which would have resulted in an emergency ambulance and where a patient would have been taken to hospital." A pilot scheme run from October 2015 to March 2016 was used by 1,037 people, with the majority taken from hospital to their home, and of those collected from home, almost half went to a hospice."

North East Ambulance Service offers end-of-life help - BBC News:

End of Life Conversations Can Transform Rest of Life Choices

From Rabbi Jack Moline: " In the course of pleading with the people in front of me to spare their loved ones the anguish of sussing out their end-of-life desires from medical directives and powers of attorney, I recreated a conversation with my own patient and loving family about what would make my life worth continuing in a final decline. I can say confidently it changed my life; I have been told that at least some others felt the same. "


Aliba D'Rav - On being a rabbi

64 Myths About Grief

Grief doesn't follow a timeline.  And you never refer to the same "normal."

"sometimes WE have unrealistic expectations because of these myths.  So today we are setting out to dispel the myths in one of our favorite types of post – a 64-things post!  64 myths about grief, to be exact."

What's your grief?