""Given the gloom and painful finality with which we speak about death, it’s no wonder that 56.4 percent of Americans are “afraid” or “very afraid” of the people they love dying, according to a Chapman University study".
"The cultural mindset is that it’s something terrible to be avoided — even though it happens to all of us.
But in recent years, people from all walks of life have begun to publicly push back against that oxymoronic idea.
It’s called the death positive movement, and the goal isn’t to make death obsolete. This way of thinking simply argues that “cultural censorship” of death isn’t doing us any favors. In fact, it’s cutting into the valuable time we have while we’re still alive".
"Death education, also called education about death, dying, and bereavement, is based on the belief that death-denying, death-defying, and death-avoiding attitudes and practices in American culture can be transformed, and assumes that individuals and institutions will be better able to deal with death-related practices as a result of educational efforts".
A Necessary Conversation works closely, with those that are willing to transform relationships with death, dying and grief. We cannot change, what we do not acknowledge. Together, we can build a bridge between living and end of life.
"Topics frequently included in formal death education include preparing wills, living wills, and medical directives; life and health insurance options; hospice; stages of death and dying; stages of grief; developmental understandings of death; funeral options; planning one's memorial service or writing one's..."
A Necessary Conversation is here to help you navigate questions, fears, and wishes you may have for end of life.
Please be proactive and take the time now to discover and explain your wishes.
"Dame Cicely Mary Strode Saunders OM DBE FRCS FRCP FRCN (22 June 1918 – 14 July 2005) was an English nurse, social worker, physician and writer. She is noted for her work in terminal care research and her role in the birth of the hospice movement, emphasizing the importance of palliative care in modern medicine".
"Hospice care is a type of health care that focuses on the palliation of a terminally ill patient's pain and symptoms and attending to their emotional and spiritual needs at the end of life. Hospice care prioritizes comfort and quality of life by reducing pain and suffering. Hospice care provides an alternative to therapies focused on life-prolonging measures that may be arduous, likely to cause more symptoms, or are not aligned with a person's goals".
"The goal of hospice care is to prioritize comfort, quality of life and individual wishes. How comfort is defined is up to each individual or, if the patient is incapacitated, the patient's family. This can include addressing physical, emotional, spiritual and/or social needs. In hospice care, patient-directed goals are integral and interwoven throughout the care. Hospices typically do not perform treatments that are meant to diagnose or cure an illness but also do not include treatments that hasten death."
Dame Cicely Saunders is truly a pioneer of the Death Education Movement, as she knew the importance of improving the care and treatment towards the end of life.
"Elisabeth Kübler-Ross (July 8, 1926 – August 24, 2004) was a Swiss-American psychiatrist, a pioneer in near-death studies, and author of the internationally best-selling book, On Death and Dying (1969), where she first discussed her theory of the five stages of grief, also known as the "Kübler-Ross model"
"During World War II she worked with refugees, in Zürich, and following the war, did relief work in Poland. She would later visit Maidanek death camp which sparked her interest in the power of compassion and resilience of the human spirit. The horror stories of the survivors left permanent impressions on Elisabeth".
"She was profoundly affected by a visit to the Maidanek extermination camp in Poland and the images of hundreds of butterflies carved into some of the walls there. To Kübler-Ross, the butterflies—these final works of art by those facing death—stayed with her for years and influenced her thinking about the end of life".
The Kubler-Ross Model is still used today in grief and personal loss. Elisabeth is a true pioneer in the Death Education Movement.
Herman Feifel, The Meaning of Death
"Herman Feifel is the pioneering figure and the father of the modern death movement. His efforts broke the entrenched taboo that had previously discouraged scientific study of death and dying and have earned him international acclaim. His work has influenced how we think about death, treat the dying and bereaved, and how we view our own lives".
"Feifel's dissatisfaction with psychology's neglect of the existential richness of life, including the everyday matters of death and dying, coalesced in the 1950s. A major consequence was his focus on what has since become known as the field of thanatology. In 1959 he edited the book The Meaning of Death, which authorities agree was the single most important work that galvanized the scholarly community concerning dying, death, and bereavement".
The death movement is nothing new, however we are having a resurgence of this movement because society is become more interested and want to be more involved in life, and death, matters.
Learn more and become a part of the movement!
Susan Cain, who wrote this article for Psychology Today asks:
"What narrative have you constructed from the events of your life"?
"The stories we tell about ourselves are the key to our well-being".
Susan says the "idea is not to delude yourself that bad things are actually good It is, instead, to find meaning in the progression from one event to the next. It is to recognize that everything constantly changes.
"Our stories are everything. They are the heart of love and of meaning. So what is your story"?
A Necessary Conversation asks "What is your backstory with death, dying and grief"?
There is a possibility you may not be clear on what your backstory is with death.
We live in a death phobic society that does not openly discusses death, dying and grief.
Your history with end of life will most likely predict how you will respond to future death experiences.
Take the steps to:
Be emotionally present with the dying.
Repair the relationships with dying.
Prepared documents to ensure your safety.
Feel confident in your medical care choices
Explore. Empower. Enrich.
Your Journey. Your Way.
A cancer patient reconsiders her end-of-life wishes, as Covid-19 brings mortality into sharper focus
In a way, the pandemic had accomplished what palliative care doctors had been trying to do for years. They’d wanted to broach these topics earlier, to give patients the chance to think over those decisions in advance. Otherwise, everything would happen by default: the body giving way, the attempt to revive the heart with chest compressions and shocks, the insertion of a breathing tube. “We default to life. We default to very aggressive care,” said Juliet Jacobsen, a palliative care specialist at Mass. General. “We often just don’t ask people.”
Please do not wait until there's a crisis (life threatening illness or diseases like covid) to start having conversations about what is important to you at the end of life, and after death care.
These conversations are so necessary and valuable for everyone in the family.
Contact A Necessary Conversation to be proactive and prepared for unknown circumstances.
This article brings up some interesting points, and I have responded (in bold/italics) to each point.
"Everyone must figure out their own way to handle the fear of death".
A Necessary Conversation feels that when we work together, it's more of a serene and powerful experience.
“Everybody has a fear of death, no matter what culture, religion or country they come from,” said Kelvin Chin, author of “Overcoming the Fear of Death” and founder of the Overcoming the Fear of Death Foundation and the non-profit turningwithin.org.
Together, we can explore the fear and the wishes for death, dying and grief. We do not have to stay in the unhealthy narrative that we've told ourselves about End of Life.
“Death is part of life. You, too, will be where I am someday, and you can’t face death with fear,”
Death is a 100%-guaranteed life event. Together we can explore, empower and enrich your journey with it.
"Even for families that are miraculously present when a patient dies, the experience is drastically altered. Before COVID-19, patients sometimes died surrounded by family members, who might have found comfort in physical contact. Now, one or two people grieve alone, separated by gloves and gowns".
"We are only starting to understand the reverberations of our patients’ isolated deaths and the complicated grief we will be processing for years to come".
This worldwide pandemic is changing every aspect of our lives, including death. Hospitals, doctors, family members and friends, are all learning the "new normal" when experiencing, both life and death.
If you or a loved one has an illness or have experienced a death, we can still come together (even if virtual) to support each other through this difficult time. A Necessary Conversation is here to help you navigate this unprecedented experience.
The world wide Covid pandemic has revealed how important it is, for the loved ones, to be in close proximity, when their loved one is dying.
This article interviews 4 "experts" and here's a brief synopsis of what they said:
"Several New York City funeral directors tell me that there is a difference in the disposition of a family when their loved one has died at home without hospice—confirmation of what we’ve long known: proper pain relief, the knowledge that death is imminent, and the company of others can make death peaceful".
"That we can’t gather with our loved ones is huge. We can typically visit a loved one in the hospital, whether they’re dying or are unconscious, and knowing we cannot do that adds another level of complexity. We can’t do our rituals, hug, cry, in person, we have to do that virtually, if we can do them at all".
"The issue is for families thinking about the person dying alone, the idea that not only I’m grieving my father who died in hospital alone, whatever he died of, but that he was there without any support from us. Thinking about what that was like for him adds another level of complexity to grieving".
"The term “grief” has been thrown around a lot. I’m sorry you can’t go to the bar you go to every Friday night but it’s not the same as a family grieving their father who died while they couldn’t be there. Grief has been trivialized and real grief, for someone who died, marginalized. When everyone is grieving something, your specific loss becomes minimized".
Death, dying and grief are normally very complex and emotional events. However, adding a pandemic to these experiences, tend to compound the complexity of feelings.
A Necessary Conversation can help to uncover and untangle the deep feelings we have with these experiences.
A "doula" is a non-medical person that assists and provides support. A doula is not a medical provider.
A doula offers comfort, compassion, guidance and a calming presence.
In fact "doula" means "woman who serves" in Greek.
Have you heard of a Birth Doula?
A Birth Doula is a trained professional that helps to guide the mother to help bring the newborn into the world.
Have you heard of a Death Doula?
Well, the concept is similar to Birth Doula, in that the doula is a profession that compassionately helps to guide and assist another person through all aspects of End of Life.
A Death Doula, or a Full Spectrum Doula (as I call myself) helps those that want to explore, empower and enrich their journey with life and death. others with all aspects in Life, and End of Life.
If you are interested in discovering what your journey may look like, then I look forward to hearing from you.
Justin Smith, History and philosophy professor at University of Paris, writes “Any fashion, sensibility, ideology, set of priorities, worldview or hobby that you acquired prior to March 2020, and that may have by then started to seem to you cumbersome, dull, inauthentic, a drag: you are no longer beholden to it,”
"Disruption and isolation have a way of encouraging us to electively re-evaluate our lives – and that can be generative".
Take this rare opportunity in life, to be still, explore your life and future death, empower the change you want in your life and enrich the relationships you have with loved ones.
Don't wait for a crisis to reevaluate what is important to you and your life. Live Death Aware.
"The premise was simple: people go along, drink tea, eat cake and discuss death: not to be morbid, just to raise awareness and to "help people make the most of their (finite) lives." Founder Death Cafe, Jon Underwood
What a simple, yet powerful idea! Gather together, openly discuss death and find a common experience among like-minded people. The power of having a community to discuss freely the emotions around death awareness can be powerful and profound.
If you are interested in a Death Cafe - please join one. If you want a more of an individualized arena to explore death and dying, please contact me.
Terri Daniel writes, "The experience of being present for a death was so spiritually expansive that I wanted to encounter it again. Eight months later, after moving across the country and starting a new life, I became a hospice volunteer."
Imagine that being present for a death, could be spiritually expansive. It can be, if we are willing to use The 3-E's ~ explore, empower and enrich our relationships with death dying and grief.
Be courageous and begin your journey and find serenity and peace can be had.
"People tend to forget that we live a mortal life. A life that can and will come to an end one day" ~ writes Jellis Vaes.
When one chooses to "Live Death Aware", one sees life differently. This new outlook allows people to live in the moment, discover their truth, get into action to help realize dreams/goals, etc.
Chose to do both death, and life, differently by understanding that life is impermanent.
Death and dying are difficult topics to speak about. However, it’s best to not ignore what’s truly happening, with a dying loved one.
The article by Merritt Whittley, offers the following:
Guidance on possible things to say or do -
Ask how they’re doing.
Ask what they need.
Let them know you’re there.
Don’t forget to say, “I love you”.
Write words of comfort in a letter.
Encourage loved ones to share.
Be honest, kind, and open.
Things to avoid saying to someone who is dying -
Don’t give false assurances.
Don’t force a conversation.
Don’t force religion if your loved one is not religious.
Make peace with yourself and your loved one
Please, if you are given the opportunity to be with the dying, be available to converse with them, if they have a desire to do so.
A Necessary Conversation can help the family to start engaging in such conversations, and to learn skills to navigate this emotional journey.
Shoshana Ungerleider writes about the "new normal" with death and grieving in todays pandemic.
"Our frontline responders are now the last in-person human connection patients are with, while their families are left without needed closure".
Although I don't feel there is ever a true "closure" for grief (time tends to soften the pain), the isolation that we are feeling right now, especially in grief, is profound.
The article provides some suggestions to help ease some of the pain through grief isolation - such as:
Hold a living funeral
Create an online memorial
Have a virtual funeral
Attend an online candlelight vigil
I'd also like to suggest calling local "grief support groups" as some of them are holding virtual groups, which helps to connect those in grief.
Covid-19 is a strong reminder of the importance of having an Advance Directive (AD).
Take this opportunity to think about what is important to you and what your wishes are..
Based on your wishes, it's imperative to put your health care decisions in writing. This way, if there is an emergency, the doctors, your family and your health care agent will know what your wishes are.
"What gives you joy and meaning in life? What makes you get out of bed in the morning? The answer is different for everyone — sometimes wildly so — which is why it's important to have your own answers to apply to the circumstances you might find yourself in".
Be proactive and empower yourself with knowledge. Assign a Health Care Agent to follow your wishes and have many conversations with family members so there is no confusion.
The coronavirus has brought death and dying to the forefront ~ we can no longer deny it. In addition to, the fear of dying alone ~ because of the pandemic ~ is becoming a "second epidemic".
"For many older people, that is the true signature of the virus: not the fear of dying, but the fear of dying alone".
Please be mindful of both of your, and your loved ones, varying emotions during this time. Take the time to communicate now and talk about what others may be feeling ~ especially the elderly.
"As described in our Natural Grief Responses info sheet, grief is experienced in a variety of ways. During this period of physical separation, you may find your grief impacted differently".
In this article, by Madelaine Goodreau, LCSW, Our House Grief Support Center, she writes that the social distancing we are currently experiencing, is possibly affecting the way you grieve.
Check out the tips Madelaine gives about checking in with your self during this time of social distancing and grief..
This articles points out how Death Doulas offer emotional and spiritual support for both the dying and their families.
There are varying ways a Death Doula may help:
They can help the dying reflect on life’s meaning.
They can conduct comforting rituals, including light touch and holding hands.
They can read to patients or play favorite music.
Doulas may also explain signs and symptoms of dying to the family and help them know what’s coming next.
A Necessary Conversation can help serve you and your loved ones during life and death
Point #4........Which, in my opinion, is extremely important and often overlooked!
“When death knocks on your door,” says celebrant Sarah Kerr, “there’s a whole lot of stuff that needs to be done. But then there’s this other part, that’s relational and emotional and spiritual...."
Most people, I believe, feel they are prepared for End of Life because they have their Wills and Advance Directives complete. This is a great start. However, End of Life is so much more than "dotting the i's and crossing the t's". It's bigger!
Most people, when near death, don't wish they spent more money on material things or spent more time working. In fact, most dying tend to reflect on their lives and their relationships.
Don't wait till death comes knocking to change emotionally and spiritually within your relationships. Start Now!
Point #3.......This particular part of this article is about how important it is for "boomers" to have a choice to die. I am not going to give my opinion on this issue, but I do feel its extremely important for any individual facing terminal illness or immediate death to know what their options are. Knowledge is Power! Once again, this article shows the importance of becoming fully aware of all options and then to make decisions based on thorough and fact based information.
Point # 2.....Coached through the maze, talks about the "unsung consequences" of what can happen when we refuse to acknowledge the future. Even though this part of the article is speaking to the geriatric health care system, I believe there are consequences for all of us - healthy, young, old, sick etc. if we avoid having these conversations now. Don't wait until you're in a crisis or when you are older. Be brave. Dare to look at End of Life and start exploring with wonder. Find someone that can help you. This article offers a few ideas on where to reach out to get some help to navigate the maze.