I, Connie Barlow, born 6 April 1952 of Frederick Charles Barlow and Helen Chesley Barlow at a hospital in Detroit Michigan, have been graced with a life full of opportunities. I lived my childhood and adult working years in what I now see was a unique Age of Exuberance for those of my heritage and nationality. Yes, some of my peers suffered polio in early childhood; I was 4 or 5 when I received the little pink sugar cube at the school I would soon attend. Our moms were grateful when we got the measles, mumps, and chickenpox early — as almost all of us kids of Old World heritage handled those diseases much better than any teen or adult.
SIX DECADES PASSED and I am now among the many who would acknowledge being alive today only because of advanced medical support we received in a hospital. Clearly, I have been blessed.
This, too, is important to say: I have direct experience of elders choosing timely natural deaths. I have thus been mentored in approaching the final stage of life.
Such experience does not include my father's death at age 48. He died suddenly 54 years ago, while working with a neighbor friend clearing our yards of trees recently killed by Dutch Elm Disease. I was at church at the time with my sister, attending our final confirmation class: Palm Sunday 1966. My father's parents were living with us at the time. Five evenings later I watched my mother gently redirect my 89-year-old grandfather from walking out the door into the cold and dark of early April in Michigan. Instead, he died peacefully in bed that night.
Thirty-two years later, my mother achieved her own timely death by simply allowing "old age" debilities to carry her off one night — peacefully, at home, after watching her evening primroses open at sunset. She needed nothing more than a few drops of morphine and me alongside, holding her hand. Over the previous five weeks I had helped her check off, item by item, all but one task on her final to-do list: repair the diningroom lampshade.
My mother would have died much earlier, absent extreme medical interventions and surgeries in her 60s and early 70s. My sister chose to end her own physical and emotional suffering three years ago; right after she got a severe cancer diagnosis. She would have died decades earlier, absent advanced medical interventions. The diagnosis came the day after her 66th birthday. The timing offered a chance to have her final act coincide with the anniversary of our father's death. It would be listed in Seattle statistics as an opioid suicide. I do not regard it as that.
SO NOW I ARRIVE IN MY OLDER YEARS at a time of societal crisis edging dangerously toward the type and scale of crisis (plague and famine) that my maternal great-grandparents and their forebears would have faced episodically in their villages in Hungary and Romania.
I am grateful for the vibrancy of life I have already experienced. I am grateful to know some of the history of family suffering and of how my ancestors responded.
Therefore, with calm and gratitude, I make this pledge ...
I, Connie Barlow, plea that my family and friends (and medical personnel who may become involved) will respect my solemn pledge and thereby do their utmost to ensure that my wish to remain unhospitalized is honored. Non-mechanized forms of comfort support will be welcomed if I appear to be in need while unable to communicate. And my plea to all: Grant me in turn this simple gift: Please remember me as one who hereby earned her place as an elder.
Signature: 
Date: 17 March 2020
Blessing: May the forest be with you.
• A HALF-HOUR VIDEO of Connie narrating and commenting on her own sample pledge is available on youtube
"Covid Legacy Pledge" for seniors (pt 2 of 2).
Responses and Related News
As of 24 March 2020, the responses Barlow has received to this pledge from seniors 65+ fall into the categories below (all quotes are rewritten as generic and kept anonymous):
• NO COMMENT [failure to reply is the most common "response"]
• "I've already decided to ride it out at home — and I am keeping my decision private." [this is the second most common response]
• "Several years ago my wife and I placed Advanced Directives at our local hospital, specifying that nothing more than comfort and drugs be provided, should we be admitted to the hospital for any reason and unable to communicate for ourselves. So we already have this one covered."
• "I would offer to give up advanced care only if I could ensure that a senior who loved life as much as I do and who voted for the political party I prefer would be the recipient."
ANALYSIS (as of 24 March): I have not yet heard an expressed reason for holding as private a decision to relinquish advanced care. Possibly most may not want to have younger family members learn of the decision — or perhaps even one's spouse. I would also imagine that any senior who is caretaker of a mentally or physically disabled spouse or relative at home would decline considering such a pledge.
APRIL 29 UPDATE: I have finally received a fully positive response for a senior (age 68) who is even willing to have a zoom conversation with me for video upload in which we share the stories of elder ancestors who inspire us to step up to a legacy pledge today. And, although I personally would want parents with kids at home to receive top care in hospitals as needed, a dear friend with 3 kids at home whose admiration for ancestors is even a greater motive than my own also shared a comment (below).
• (Age 68) "I've been on this page for awhile. My Grandmother set the gold standard for dying consciously for me. So thankful that you put this together for those who need the validation, and encouragement, and hand-rail, to accomplish this position."
• (Father with 3 kids at home) "Yes, as a parent, the clear focus to help our kids and future generations is much stronger than personal comfort or safety. That's why I'm happy to do and risk what I need to so as to help younger generations. The kids are a lot more important than my own pleasure or security now. So many of our Ancestors lived for us, and I hope to do my part to live up to that."
PROBLEMATIC RESPONSES FROM YOUNGER GENERATIONS: I have yet to hear anything fully supportive from someone in a younger generation. One response intimated that I must be depressed and should seek help. Another suggested that a publicly stated pledge could be used inappropriately as "virtue signaling" and could pressure other seniors to decline advanced care in order to avoid being judged as selfish (or unworthy?). As well, could it be that the growing "OK, Boomer" chastisement by youngers, having recently morphed into tagging Covid-19 as "the Boomer Remover", makes compassionate young people hesitant to express any semblance of support for a senior who declines medical care for Covid-19. Perhaps it is unusual for a young person raised in a culture of individualism and entitlements to have empathy for those who feel they have already lived a full life — and thus are quite ready (even happy) to give it up for a very good cause. Perhaps it is impossible for nonseniors to sense that a senior might actually be grateful for an opportunity to serve their descendants, even to serve their country in this way. Liberal wariness of "patriotic" labels may complicate this issue, now that Fox News has aired the plea of the 69-year-old Lieutenant-Governor of Texas, Dan Patrick, who told Tucker Carlson:
"You know, Tucker, no one reached out to me and said, 'As a senior citizen, are you willing to take a chance on your survival in exchange for keeping the America that all America loves for your children and grandchildren?' And if that's the exchange, I'm all in. That doesn't make me noble or brave or anything like that. I just think there are lots of grandparents out there in this country like me." (March 23)
"SELF-TRIAGE" IS COMPASSION FOR MEDICAL STAFF: One respondent offered the useful term "self-triage" as the generic response some seniors are privately taking. More effort will be needed to help citizens of all ages recognize that, while medical staff may be trained to conduct triage, the most compassionate actions are those that minimize the need for staff to have to engage in emotionally challenging decisions and actions. Accessing more beds and ventilators is just one approach to forestall the need for triage. Advance directives by willing seniors is another. Consider this statement by a leading medical ethicist, Samuel Gorovitz, as reported in The Guardian:
"Consider a patient, 85 years old, on a ventilator, out of hospice care. Along comes a 45-year-old, with a family, and in fundamentally good health and a good prospect of full recovery from coronavirus if treated with the best available treatment. Is it not only acceptable but ethically necessary to take grandpa off the ventilator and switch him to palliative care, wipe away the tears, and switch the ventilator to the younger patient?
"These decisions are already being faced with regard to protective equipment that are inadequately supplied. That's not the same as ventilator allocations, but everyone knows it's coming and those decisions are likely being made right now." (March 21)
March 29, 2020 UPDATE: This article, "Experts Race to Set Rules For Deciding Who Lives and Who Dies", by Jyoti Madhusoodanan, in Undark journal is a wake-up call for seniors in that we cannot passively rely on hospital triage rules to favor younger folk; hence the imperative for at-home self-triage:
... As patients flood hospitals and intensive-care resources dwindle, health care workers could step into a grey area where they must choose between caring for the patient before them, and considering the greater good of society as a whole. Such decisions about who receives care — and who doesn't qualify — are not supposed to be made by clinicians on the intensive-care unit floor, experts note, but by a triage team that typically includes a doctor, an ethicist, and a chaplain or other staff member. Unlike doctors in wards, the triage team is ideally blinded to a patient's ethnicity, gender, or financial means. That distinction is crucial to avoid biases and long-term trauma, because "no one comes off a triage team without damage to themselves," Abbott said.
... On Saturday, the Office of Civil Rights within the U.S. Department of Health and Human Services issued a notice to health care providers that discrimination "on the basis of race, color, national origin, disability, age, sex, and exercise of conscience and religion" is prohibited by federal law — "including in the provision of health care services during Covid-19."
... In videos widely circulated on social media last week, doctors and other health care providers in Spain lamented the yawning shortages of ventilators there, and the harrowing decisions they've had to face as a result. In one heartrending video, a doctor is moved to tears as he shares a report from a colleague in Madrid, where there are too few doctors and nurses to match the patient population, too few beds, and too few ventilators, forcing a decision to favor life-saving interventions for those under 65. The elderly, unable to have visitors, are sedated and allowed to die. "We can't let them die in this unworthy manner," the doctor says.
... Still, it remained unclear whether this and other moves would be enough to prevent the possibility that American medical teams, too, will soon face the hardest possible decisions over who lives, and who dies, when not everyone can be treated. And while recommendations such as randomizing patient names to decide who gets a ventilator may seem excessive, ethical dilemmas that once seemed confined to war zones and history may soon unfold in cities and towns across the U.S.
Note: The above journalistic article references this 23 March 2020 article, coauthored by 10 doctors, in the New England Journal of Medicine: "Fair Allocation of Scarce Medical Resources
in the Time of Covid-19". A key conclusion not used in the journalistic piece is this:
Supply limitations constrain the rapid production of more ventilators; manufacturers are unsure of how many they can make in the next year. However, in the Covid-19 pandemic, the limiting factor for ventilator use will most likely not be ventilators but healthy respiratory therapists and trained critical care staff to operate them safely over three shifts every day. In 2018, community hospitals employed about 76,000 full-time respiratory therapists, and there are about 512,000 critical care nurses — of which ICU nurses are a subset. California law requires one respiratory therapist for every four ventilated patients; thus, this number of respiratory therapists could care for a maximum of 100,000 patients daily (25,000 respiratory therapists per shift). Given these numbers — and unless the epidemic curve of infected individuals is flattened over a very long period of time — the Covid-19 pandemic is likely to cause a shortage of hospital beds, ICU beds, and ventilators. It is also likely to affect the availability of the medical workforce, since doctors and nurses are already becoming ill or quarantined.
This table included in the paper visually summarizes the key triage values:
• April 23, 2020 UPDATE - Data now confirmed: Few covid patients put onto ventilators ever recover: "In New York's largest hospital system, 88 percent of coronavirus patients on ventilators didn't make it". A crucial data point you will find only in the scientific paper itself (published in the Journal of the American Medical Association): Of covid patients on ventilators, the senior cohort of age 65+ has a 97% possibility of dying. A lengthy Reuters article on the topic of ventilator results on covid patients provides a broader set of statistics and details on why ventilator deployment can permanently damage lungs: "Special Report: As virus advances, doctors rethink rush to ventilate". NYT May 4 Op-Ed presents an emergency room doctor's experience of emotional turmoil in the covid necessity to "Do Not Resuscitate".
• April 28, 2020 UPDATE - Sweden was lone among European nations to not order closures of restaurants and broad quarantine orders. Here is about the only outcome that experts found to criticize: "When responses are assessed after the crisis, Mr. Tegnell acknowledges, Sweden will have to face its broad failing with people over the age of 70, who have accounted for a staggering 86 percent of the country's 2,194 fatalities to date." Source: New York Times, 'Life Has to Go On': How Sweden Has Faced the Virus Without a Lockdown. Note NYT opinion columnist Tom Friedman offered this same-day commentary: "Is Sweden Doing It Right?".
• May 14, 2020 UPDATE - "... Alzheimer's Research UK said it was 'shocking' that 4,048 of the people who have died — almost one in five of the total — had dementia and that this would increase fear. However, it is known that 88% of deaths have been among over 65s and death rates are highest among those over 80." "Quarter of Covid-19 deaths in English hospitals were of diabetics", by Denis Campbell, in The Guardian. Also, May 13 - "Pensioners 34 times more likely to die of Covid-19 than working age Brits, data shows", by Niamh McIntyre, The Guardian: "... There have been 8.4 deaths per 100,000 people among the under 65 category, which rises to 286 deaths per 100,000 in the over 65 group. The contrast is even starker in data concerning those under 45. According to the Office for National Statistics figure, there have been just 401 deaths in this age group — one death for every 100,000 people, or around 1% of the overall death toll.
• May 31, 2020 UPDATE - "Could nearly half of those with Covid-19 have no idea they are infected?", by David Cox, Guardian. EXCERPTS:
When Noopur Raje's husband fell critically ill with Covid-19 in mid-March, she did not suspect that she too was infected with the virus.
Raje, an oncologist at Massachusetts General Hospital in Boston, had been caring for her sick husband for a week before driving him to an emergency centre with a persistently high fever. But after she herself had a diagnostic PCR test — which looks for traces of the Sars-CoV-2 virus DNA in saliva — she was astounded to find that the result was positive. "My husband ended up very sick," she says. "He was in intensive care for a day, and in hospital for 10 days. But while I was also infected, I had no symptoms at all. I have no idea why we responded so differently." It took two months for Raje's husband to recover. Repeated tests, done every five days, showed that Raje remained infected for the same length of time, all while remaining completely asymptomatic. In some ways it is unsurprising that the virus persisted in her body for so long, given that it appears her body did not even mount a detectable immune response against the infection. When they both took an antibody test earlier this month, Raje's husband showed a high level of antibodies to the virus, while Raje appeared to have no response at all, something she found hard to comprehend.
... But the realisation that asymptomatic people can spread an infection is not completely surprising. For starters, there is the famous early 20th century case of "Typhoid Mary", a cook who infected 53 people in various households in the US with typhoid fever despite displaying no symptoms herself. In fact, all bacterial, viral and parasitic infections — ranging from malaria to HIV — have a certain proportion of asymptomatic carriers. Research has even shown that at any one time, all of us are infected with between eight and 12 viruses, without showing any symptoms.
... While scientists still don't know whether asymptomatic people are as contagious as those who display symptoms, there are still many ways in which they can pass on Covid-19. "We know that you don't need to be coughing to transmit a respiratory infection like Sars-CoV-2," says Houben. "Talking, singing, even blowing instruments like a vuvuzela — in the past all of those have been shown to transmit respiratory viruses in some way."
Since January, the race has been on to try and identify just how many asymptomatic cases are out there, with varying findings. One study in the Italian town of Vo reported that 43% of the town's cases of Covid-19 were asymptomatic, while initial reports from the US Centers for Disease Control and Prevention investigation into the spread of Covid-19 on the Theodore Roosevelt aircraft carrier in March, suggest that as many as 58% of cases were asymptomatic. Some 48% of the 1,046 cases of Covid-19 on the Charles de Gaulle aircraft carrier proved to be asymptomatic while, of the 712 people who tested positive for Covid-19 on the Diamond Princess cruise ship, 46% had no symptoms.
"Almost all evidence seems to point to a proportion of asymptomatic infections of around 40%, with a wide range," says Houben. "The proportion is also highly variable with age. Nearly all infected children seem to remain asymptomatic, whereas the reverse seems to hold for the elderly."
[In South Korea]:
"Once identified, all asymptomatic people are asked to self quarantine in their house until they test negative, with health service officials checking on them twice daily, and monitoring their symptoms," says Eunha Shim, an epidemiologist at Soongsil University in Seoul.
... "The argument is that face covers may not protect the wearer, but might significantly reduce transmission of virus particles to adjacent people in the closed environment. If there is any benefit to be gained, then everyone should wear a mask, which is why some countries are fining people who do not wear a mask and preventing them travelling." Some have argued that masks may pose a risk of harm to the wearer because of their potential to become an infectious surface, but Keevil says this can be avoided through proper cleaning. "There would need to be policies such as, when arriving at work, place the mask immediately in a plastic bag and wash your hands," he says. "And then, when returning home, carefully take off the mask and place it immediately in a washing machine for a 60C wash and wash your hands."
... For Raje, understanding why asymptomatic patients like her respond the way they do to the virus, will have some critical implications for all of us over the coming months, for example in determining whether vaccines turn out to be effective. "The big question I have after my experience, is whether a vaccine will really work in all people," she says. "The vaccination approach is to create an immune response, which then protects you. But if asymptomatic people are not producing a normal antibody response to the virus, what does that mean? Because it's these people who are the vectors and the carriers of this virus, I think we can't get away from social distancing until we have some of these answers out there."
New York Times article on Why Self-Triage Is Crucial
"Now Doctors Are the Ones Saying Goodbye"
13 April 2020 by Joseph Goldstein and Benjamin Weiser
Excerpts below or click for full article.
The elderly coronavirus patient arrived at the Manhattan hospital extremely sick and rapidly deteriorating. Dr. Marissa Nadeau, an emergency medicine physician on the night shift, had little time to ascertain his wishes. The patient, gasping for breath but alert, made it clear he did not want to be intubated and put on a ventilator, which might have been his only hope for survival.
Dr. Nadeau placed her hand on his shoulder, then used her phone to FaceTime with his family, telling them of his choice and holding up her phone so they could say what might be a final goodbye. It was the third time that night at Columbia University Irving Medical Center that Dr. Nadeau had helped critically ill patients communicate with their families over FaceTime; the two other patients had also rejected intubation — a decision with potentially life-ending ramifications.
One of the cruelties of Covid-19, the disease caused by the coronavirus, is that many patients may have just minutes to settle their affairs. With family members for the most part barred from visiting their loved ones, doctors often are left to facilitate such moments, full of emotion and tears. They are wrenching for physicians, too.
... In a pandemic, the normal rituals around death are suspended. In New York City, where on some days the illness has been killing someone every four minutes, some funeral homes have stopped holding wakes, cemeteries are limiting graveside gatherings and the authorities have warned people not to gather for religious services.
The actions are meant to keep the living from congregating around the dead and dying. And nowhere is that principle more strictly enforced than in hospitals.
Intensive care units in the city once saw a steady stream of visitors. Nurses and doctors learned about their patients through them: which patient had the spouse who spent every waking hour at the bedside, which patient had the large family.
Now bedside vigils, and visitors generally, are a thing of the past.
... Patients who are going to be intubated and connected to a ventilator are generally first placed in an induced coma. When told what awaits them, some respond with disbelief and denial. Most patients, though, are just afraid.
"I try to explain that his breathing is getting worse and he's getting tired because of it," said Dr. Meredith Jones, an emergency room physician at Brookdale Hospital Medical Center in Brooklyn. "That puts a strain on the body, and sometimes it's best to take that strain off and let the ventilator do the breathing for you."
They ask, "How long will this last?" Or, "Will I die?"
We hope you will wake up in a week or two, say the doctors who believe in giving hope. Others just say, "We don't know."
But the doctors generally offer the same advice before proceeding. "Now is the time to call your loved ones and tell them all the things you want to say," one doctor at NewYork-Presbyterian Hospital/Weill Cornell hospital said he tells his coronavirus patients before they are intubated. "I'll come back in 15 minutes."
... Not all critically ill patients opt for a ventilator. "I want to die comfortably," some patients explain, said Dr. Joseph Lowy, head of palliative care at N.Y.U. Langone Health. They are given a room and if appropriate, medication like morphine.
... A physician assistant holds the patient's hand, while the doctor positions the phone so the dying patient can listen to a relative's voice.
... "We are being asked to do things that are tearing at our souls," Dr. Lock wrote. "We must not normalize this." ...
Note by Connie Barlow on 14 April: Data are still sketchy, but it looks like some half of covid patients thus far put on a ventilator have died — but far fewer than the other half are counted as "recovered." One can surmise that many remain on respirators for weeks, and perhaps only removal of the respirator would spell their demise. In-hospital triage then requires medical staff to make the decisions for ventilators to be removed from non-recovering patients in order to serve others with better prognoses.
• April 23, 2020 UPDATE - Data now confirmed: Few covid patients put onto ventilators ever recover: "In New York's largest hospital system, 88 percent of coronavirus patients on ventilators didn't make it". A crucial data point you will find only in the scientific paper itself (published in the Journal of the American Medical Association): Of covid patients on ventilators, the senior cohort of age 65+ has a 97% possibility of dying. A lengthy Reuters article on the topic of ventilator results on covid patients provides a broader set of statistics and details on why ventilator deployment can permanently damage lungs: "Special Report: As virus advances, doctors rethink rush to ventilate".
Resources for a
Deep-Time Understanding of
Natural and Timely Death
Resources for adults and kids
Created by Connie Barlow (beginning in 1998)
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♦ STORIES AND DRAMATIC SCRIPTS by Connie Barlow (to be read aloud):
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"Tree Talks About Death" (children's story) 2009
This story is a non-picture book, designed to be read interactively to a child (ages 6 through 11, along with any post-teen, playful adult). The goal is to meaningfully and memorably convey a mythic tale through which the deep understandings, thanks to the scientific worldview, of the creative role that death plays at all scales of the cosmos can be grasped by both head and heart. WEBPAGE for accessing in PDF and also an AUDIO of Connie reading aloud this story to Michael Dowd midway through his chemotherapy regimen for lymphoma.
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♦ VIDEOS by Connie Barlow:
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• "Death Through Deep-Time Eyes"
in AUDIO, or VIDEO
April 2005, Connie Barlow presented the SONG and CHARTS version of her multi-year presentations on death. In later years in her death presentations she eliminated the song and switched from charts to powerpoint.
This earliest version (37 minutes) has an immediacy and audience involvement that is diminished in the later, more "professional" versions of the same program. Those later programs (videos on youtube) can be accessed as shown below:
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• "A Deep-Time View of Death" PLAYLIST - 9 VIDEOS by Connie on youtube, posted 2005 - 2011
• "Post-Doom Death of Expectations" (2019)
- Sermon at Unitarian Universalist Congregation of Whidbey Island, WA (see below)
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Connie Barlow offers what she has learned while video-editing the first set of episodes of Dowd and Barlow's Post-Doom Conversations. Barlow describes 5 patterns:
(1) Diversity of outlooks; (2) Find a peer group; (3) Share stories; (4) Identity shift / myth; (5) Generational distinctions.
27 minutes • (recorded December 2019; posted February 2020)
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♦ ESSAYS by Connie Barlow (for personal reflection):
• "Clouds and the Crystal Bell", 1998 (unpublished)
Reflections on the volitional natural death of Connie's elderly mother in 1998, for whom Connie served, solo, as in-home caretaker for the six weeks leading up to (along with the night of) her death. PDF. NOTE: The "Clouds" stress-reduction audio mentioned in this text is available through NewHealthVisions.com.
• "The Judgment of the Birds", 2000 (unpublished)
This memoir, which uses the same title as one of Loren Eiseley's revered essays, was written soon after (and which describes) Connie's solo visioning experience in the Gila Wilderness in July 2000; included within it is a flashback to a previous solo wilderness experience in the Gila backcountry much farther upstream on Little Creek, and that occurred July 1997. PDF. Shortly after writing the essay (September 2000), I recorded an audio version ("Loren and Me") that begins with the ambient night sounds, followed by a reading of excerpts from Eiseley's "Judgment of the Birds" essay, then my own memoir, followed again by night sounds. The recording took place outdoors, at night, on a rock ledge along a shallow side canyon of the West Fork, right after the trail begins. Click to listen to 36 minute AUDIO
♦ BEST RESOURCES BY MICHAEL DOWD in text format - published in Huffington Post, 2012
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"Death: Sacred, Necessary, Real"
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"A Scientific Honoring of Death"
♦ FULL LIST OF RESOURCES created or recommended by Connie Barlow and Michael Dowd, including litanies and songs for MEMORIAL SERVICES. Access their lengthy, annotated Death Programs webpage.
