What is medical aid in dying, when is it done and is it legal?

— Here’s an update on the end-of-life debate.

A 2020 Gallup poll showed 74% of Americans surveyed said doctors should be allowed to end the life of a patient with an incurable disease “by some painless means” if the patient and the patient’s family requests.

More states and countries are enacting laws to let terminally ill patients in great pain decide when to die

By Donna Apidone

In January, just a few days after the start of 2023, a woman walked into the Daytona Beach, Florida, hospital where her terminally ill husband was a patient and shot him. She said she intended to kill herself as well, but hospital staff stopped her before she could carry out the second part of her plan.

Ellen Gilland told police the shooting was by mutual consent, that she and her husband agreed that it was the best way for them to handle his decline in health. He was too weak to take his own life.

Only 10 states and the District of Columbia have laws that allow medical assistance in dying by making a lethal dose of medication available to adult patients who request one. The practice also is legal in Montana because of a court ruling.

Medically assisted deaths are illegal in all other states and U.S. territories, including Florida. No jurisdiction permits the use of firearms to end a human life.

Words matter

Medical aid in dying is not euthanasia. The latter term includes the act of one person killing another who is terminally ill or hopelessly injured and suffering great pain. Euthanasia is illegal throughout the United States. However, if the person who is dying self-administers, the act is not considered euthanasia.

In the U.S., terminology has evolved. The current acceptable wording is “medical aid in dying” or “medical assistance in dying” indicating that a medical professional will make a lethal dose of one or more drugs available to the patient but leave it to the patient to decide whether to take it. The terms are abbreviated as MAID.

The word “suicide” is not accurate, although is it sometimes incorrectly applied. Death certificates state a patient’s underlying illness as cause of death.

Although 22% of Americans have access to medical aid in dying, fewer than 1% of people in the 10 states and Washington, D.C., where this option is legal actually obtain the medication, and only two-thirds of them ultimately decide to take it, according to Compassion and Choices, a nonprofit group that advocates for end-of-life options including, but not limited to, medical aid in dying.

Where it is legal in the U.S.

In addition to reaching a consensus on the language describing medical aid in dying, the 11 jurisdictions that authorize the practice are consistent in their intent, said Kim Callinan, president and CEO of Compassion and Choices.

“Most of the laws across the states are very similar,” she said. “The eligibility criteria are the same. And the safeguards are the same.”

Geoff Sugerman, who served as campaign manager for Oregon’s Death with Dignity law, which was enacted in 2012, and works closely with the national organization called Death with Dignity, laid out the four cornerstones of the laws in in the 11 jurisdictions:

  • Patients must be adults with a terminal illness and a prognosis of six months or less to live.
  • Attending physicians must verify patients are acting voluntarily.
  • Patients must be able to make and communicate their decision to healthcare providers.
  • Patients must be able to self-administer (ingest) the medication.

Differences among laws

There are some differences in the laws. Where it is legal, a common waiting period for approval of medical assistance in dying is 15 days. Hawaii mandates 20 days. New Mexico and Oregon are less than 15 days. In California, a 2022 adjustment to the law reduced the time from 15 days to 48 hours.

Most medically assisted deaths are limited to residents of states that have legalized the procedure. However, the Vermont legislature in April passed a bill that would eliminate the residency requirement; Gov. Phil Scott has said he would sign it into law. Meanwhile, Oregon officials have said the state will not prosecute nonresident cases.

The number of states considering medically assisted death continues to grow. Minnesota and Florida have bills in their legislatures.

From the archives (June 2019): How ‘death with dignity’ laws allow terminally ill patients to take back control — sometimes at a price

Fine-tuning legislation

While some states debate new MAID laws, others are weighing changes to existing laws. As public opinion adjusts and data is collected, legislators in several states are considering amendments. Some details in the original laws may have “served as barriers to the patient,” Sugerman explained.

Changes to legislation may include the length of the waiting period and expanding the definition of “medical professional” to include Physician Assistants and Nurse Practitioners. Some states may remove their residency requirements so that patients can travel from other jurisdictions for the process.

Details and updates about state legislation are available through Compassion and Choices and Death with Dignity.

Healthcare systems

A patient’s first consideration of medical aid in dying may come in a conversation with a primary care physician or specialist when treatment options have been exhausted.

Dr. Nathan Fairman is a physician with UC Davis Health in California. He was selected to provide medical information to the state’s legislators as they prepared wording for the End of Life Option Act, enacted in 2015. Fairman explained how the process might go in his health system.

A UC Davis Health patient sees a primary care physician until a diagnosis necessitates care from a specialist. If treatment of a disease or condition is no longer beneficial, the specialist is likely to discuss end-of-life options with the patient.

Depending on the illness, medical aid in dying may be one of several options. Others may include palliative care and cessation of eating and drinking. Each option comes with its own set of considerations.

The patient makes the choice. A team is put in place to help the patient and doctors through the qualification process. “We employ navigators,” Fairman explained. These are two trained professionals who “make sure the patient has gone through all of the required steps — and there are a lot of them” — to qualify for medical aid in dying, if that is the choice.

“We were intentional about having a clinical social worker in this role,” he said. “It requires a high degree of advocacy and health system literacy. You need to have someone who is jumping through those hoops.”

Doctors may opt out

Doctors may disagree with the state law or their system’s policy. Professionals are not required to participate in aid in dying. Depending on personal beliefs, a doctor may refer a patient to a colleague in the same system.

In California, although referrals are allowed, they are not guaranteed. In the region served by UC Davis Health, most of the major health systems have policies for the process. The exception is Dignity Health, a Catholic healthcare system. A patient may have to change health systems to have access to aid in dying.

On the other side of the country, Providence St. Joseph Health is a Catholic healthcare system serving residents of Maine and Vermont, two states that have legalized medical aid in dying. The healthcare system has published its end-of-life policy. “PSJH considers intentionally hastening death to fall outside the scope of legitimate medical practice,” according to the document.

The PSJH policy acknowledges its patients may request a service it will not provide. “Providers and caregivers must not actively obstruct eligible patients from discussing, exploring or pursuing legal avenues to hastening death. Within the context of a therapeutic relationship, providers and caregivers should discuss with the patient why they may be inquiring about hastened death and what unmet needs there may be.”

Final exit network

A nonmedical end-of-life option is available through the Final Exit Network (FEN), a nonprofit organization based in Tallahassee, Florida, with about 20 “exit guides” who volunteer in all 50 states.

Wendell Stephenson lives in California and is a member of FEN’s board of directors. He said the organization is “devoted to providing information to people about how they can end their lives in a peaceful manner.”

FEN volunteers may be present at a death, but that is not required. Because physicians are not a part of the Final Exit Network process, medications are not used. Instead, FEN volunteers suggest using an inert gas and explain how to obtain and use it. Family members also receive guidance on observing the process but not helping, to avoid criminal charges.

Do patients measure up?

FEN has a medical evaluation committee consider applications from patients seeking to end their lives. The committee (composed of MDs and others with medical and mental health backgrounds) review applicants’ medical records with a couple of key considerations.

One of FEN’s rules is that applicants have conditions that “cannot be cured,” Stephenson said. They must have an intractable medical condition that seriously impairs quality of life. Most of these can be expected to shorten the applicant’s life, but death does not have to be imminent.

Another requirement is that applicants be physically able to manipulate the equipment that delivers the gas, Stephenson explained.

FEN does not provide the inert gas or related equipment, nor does it publicly discuss the content of the information they provide. For details, they refer to “Final Exit,” one of the books written by the organization’s founder, Derek Humphry.

Supporters and opponents

The Pew Charitable Trusts, a nonprofit research organization, issued a report summarizing the viewpoints of several of the world’s major spiritual groups regarding medical aid in dying. The report, published in 2012, provides more perspective from each religion than a simple “yea” or “nay.” Many faiths do not approve of MAID, a few allow for it, none endorse it. Some acknowledge the request for reduction of lifesaving techniques at the end of life.

In a Gallup poll in 2020, 74% of the 1,028 Americans surveyed said doctors should be allowed to end the life of a patient with an incurable disease “by some painless means” if the patient and the patient’s family requests it.

Activists are often family members of patients who have died painful deaths.

The Catholic Church has called MAID “morally impermissible.” Some Christian medical associations have also spoken out against medical aid in dying. The National Hospital and Palliative Care Organization is opposed, as is the American Association of People with Disabilities.

Will insurers cover it?

Will insurance cover medical aid in dying? “Sometimes,” Fairman said. “Many private insurances will cover it. MediCal [California’s version of Medicaid] will cover it for the state portion. Any federal insurance will not cover it.”

The Compassion and Choices website reports, “Regardless of whether a state has authorized medical aid in dying, insurance providers cover treatments that are deemed effective and proven, and not those considered unnecessary, experimental or below the standard of care.”

Countries outside the U.S. allow different end-of-life options. Callinan, CEO of Compassion and Choices, warns against comparisons “because the healthcare systems, the political systems, the economic systems, the cultures are entirely different.”

Canada passed its MAID law in 2016, covering residents eligible for Canadian healthcare. It has been updated several times. By 2024, a decision will be made regarding the inclusion of mental illness as a criterion.

Outside the U.S.

While euthanasia — medically assisted death performed by someone other than the patient — is illegal throughout the U.S., it is allowed in some other countries.

End-of-life options vary around the world. The practice is legal in Belgium, Luxembourg, Netherlands, Switzerland, Austria and Spain. Some processes resemble medical aid in dying and others are closer to euthanasia, though at the request of the patient.

Several Swiss organizations offer medical aid in dying to nonresidents. The oldest and best known is Dignitas, which has been featured in BBC and PBS documentaries. In addition to a membership fee, a patient pays a considerable sum for the end-of-life procedure.

Medical aid in dying is legal in New Zealand. In Australia, five of the six states either allow medical aid in dying or will by the end of 2023. Colombia allows the practice, while Chile, Uruguay and Argentina have introduced bills to decriminalize the procedure.

Several other countries have laws that allow patients to decline treatment and/or nourishment that would sustain life, according to World Population Review.

Complete Article HERE!

Learning to live

— Dementia brings ‘unofficial loss’ and often leads to grieving alone

By Lauri Perman

When my teenage sister died in a car accident, friends and neighbors blessed our family with oodles of food. The large dining room table, used only on holidays, was covered with food, enough to serve all the out-of-town family members who crowded in the living room. In the aftermath of a horrific death, community support was abundant and healing, a source of comfort, both emotional and practical. Our family’s grief was recognized and honored; it was “official” grief in the eyes of the world.

This is in sharp contrast to what happens when a spouse develops dementia. In her November 2019 New York Times article, “The Loneliness of Frontotemporal Dementia,” Dr. Sara Manning Peskin quoted a spousal caregiver as saying:

“This grief is not official … Casseroles do not appear at the front door, flowers are not delivered, condolence letters are not received.”

At a time when a spouse has lost a partner, the community often retreats rather than rallies around. It’s well known that spousal caregivers end up isolated. What is less well known is that in their isolation they are grieving alone.

Their spouses are alive and yet no longer present. It is what family therapist Pauline Boss calls an “ambiguous loss.” During my husband’s long years of decline, it often felt as if someone had kidnapped him. I’d look at the stranger in the familiar body and ask myself, “Who are you? And what have you done with my husband?”

Friends disappear. At first I wondered what was wrong with us that our friends had disappeared. Then I realized it was normal and happens to most people. I learned to treasure those rare people who stayed or re-appeared. When my husband was in skilled nursing care, it was a great comfort to me when other people recognized his existence by visiting or sending him a birthday card.

To engage in conversation with someone with dementia it helps to let go of expectations. The person we once knew is no longer present. If we recognize that loss and acknowledge our grief, we are better positioned to engage with the new person before us. Visiting with someone with dementia can be an opportunity for creativity and to practice cognitive flexibility. It can be good for us, a different form of exercise and meditation.

When my husband was still well, he had a lovely dinner with his mother at a Chinese restaurant when her dementia was quite pronounced. They ordered two entrees to share. My mother-in-law took some of the first dish, declared it excellent, and then did the same with the second. Next she returned to the first dish and said, “Oh, I haven’t tried this one.” And try it again she did, once again for the first time. Each dish she tried, no matter how many times she’d tried it before, was for the first time. By the time dinner was over, my husband estimated she’d enjoyed a full Chinese banquet. He exercised cognitive flexibility in not correcting her.

If you know someone whose spouse has dementia, please reach out. Take the person to lunch and listen, really listen. Ask the spouse what he or she misses the most. Acknowledge that their life has changed, that they have had an “unofficial loss.” Sometimes it may be more helpful to take the person with dementia out for lunch or for a walk, to give the caregiver some precious alone time.

It can be especially hard to comfort a caregiver who denies their loss, and many do. This semi-heroic stance seems admirable, but the pain is present nonetheless. It’s a delicate balancing act to acknowledge both the presence and the absence of the person with dementia. Of course dementia is a gradual loss not a sudden death and the caregiver’s needs change over time and sometimes even from day to day. Staying in touch helps you know what kind of support is most helpful.

What happens when the person with dementia dies? Does the community rally around the bereaved spouse? Unfortunately no. Often the community consoles the bereaved spouse with words such as “It’s a blessing.” Or, “I know you wouldn’t have wanted him to live much longer.” Or, “He didn’t really have much of a life any more, did he?” “Now you’re free. You’ve been so burdened with caregiving.”

The spouse is denied support when the person with dementia is living and denied support again when the person with dementia is dead. We can and must do better. When someone with dementia dies, the bereaved spouse has still lost a beloved person whose death merits the same compassion any death does.

Complete Article HERE!

What is a dog, then?

— On the unbearable death of my dog, Polly

Robert Dessaix’s partner, Peter Timms, and their dog, Polly. ‘Our tiny mortal family. For a moment in time, together and happy.’

After 14 years, Polly was a part of Robert Dessaix’s family. One day after her death, the writer grapples with grief and what it is to love a dog

By Robert Dessaix

We are a threesome. The most wonderful thing in the world for me – the most joyful, vivifying, meaningful, precious thing in the world – is my tiny family: Peter Timms, the dog and me. We are the only family any of us has. The dog is not a child, of course, nor a mere companion, nor even our “best friend”. The dog is our dog. The dog is our anchor. We love each other, Peter and I, anchored by our dog (we’ve had four). I can see that now. It has taken me all my life to see this. And I held out my arms in front of me in utter impotence with my fingers touching to try to hold us all in.

Polly died yesterday, you see. It is unbearable. I am not saying this for the sake of it: I cannot bear the acute sadness. I cannot bear the memories of yesterday before three o’clock or last week or ten years ago or 15. I cannot bear saying goodbye to Polly Timms forever. That’s the point, as it is when we kiss or wave or say goodbye to any loved being: it’s for the rest of time.

So you will forget, while frantic to remember everything forever – the rattle of her bowl, the bed she was asleep on every morning, how she turned that corner over there every morning on her walk, squatted on that lawn, pricked up her ears at “tummy rub” and “people coming”. Yet remembering any of it causes acute anguish.

I have to say this next thing (sorry) because it is at the heart of my grief today. Polly had stopped eating – a prawn here, a biscuit there, and even a sliver of salmon three days ago at a restaurant up on a hill above the sea where you can sit outside if you like, with your dog. But really she had stopped eating. And she was retching now and again. And tired easily. I thought we could cajole her into eating. But we couldn’t. Love is not all we need at all.

So when the vet said we might want to consider if it was time to say goodbye, I started bawling. How unmanly. I was shocked. Polly was right there, bright-eyed, I stretched out my hand, she wagged her tail and came over to me. She was given two weeks if we did nothing. I had to leave the room. I sat outside the room where Peter waited with her, crying loudly and disturbing everyone in the waiting room just round the corner. And when she was being led away past me, she turned and looked at me and gave me a last wag of her tail. And then she ceased to exist. Forever. Forever. In a second.

Robert Dessaix’s dog, Polly, in front of the couch.
Robert Dessaix’s dog, Polly, in front of the couch.

This memory is unbearable today. You know why. It makes me feel sick.

It is the trust, even “unto death”. She trusted us to do the best thing for her. Why was what we did the best thing? What sort of universe is that? We had to coax her into the car to take her down to the vet’s to her death. The memory is beyond painful.

Nothing is the same today. I have never woken up in this house without finding Polly waiting for a pat. I have never spent a day here without hearing her, seeing her, moving about, going in and out of the garden. Now nothing. Just yesterday we strolled around the block, sniffing things and peeing here and there as usual. The day before she went for a walk beside the river in the sun. The day before that along a wild beach on the east coast (after that slice of salmon at the restaurant on the hill). The day before that … but it is painful to remember, it’s a kind of anguish.

Our family has lost its glue. That’s the first word I said, apart from “No”: “The glue has gone.” Peter and I are left untethered in the emptiness, we have come unstuck, for now we are sickeningly adrift.

We will recover. We all do. Just an ache will be left when we see think of Polly. And then, in some form, it will happen again.

Dogs are not people. A dog may be playful and dependent, not understanding simple things, just like a child, but a dog is not a child; a dog may always be beside you or in the backyard, with nothing to say but with a ready pleasure at seeing you come in the door, at being close, yet is not just a companion; a dog is not one of your friends, you can’t chat – although you can joke with her sometimes – nor share anything beyond the moment.

What is a dog, then? What is this being that is not really a child, companion or friend but … WHAT? Something I now see there is no word for because a dog is a different order of being – not better than a cat or parrot, but different. A soulmate, I suppose. Is that enough? A heart to give your heart to. To lose this soulmate, to surrender her to a needle one Tuesday afternoon, is indescribably painful. There is no remedy. She’s gone. My love, you see, was not enough.

It’s all too short, too fragile – and the ending is incomprehensible. How can a loved being cease to exist? There is hardly time to love a dog as you’d like, as the dog would no doubt like. I must concentrate now on noticing and loving what is present – not live in the present like a blowfly, but focus on what I can see and hear and touch and hold, not worrying about what it will all add up to mean. Magnify it somehow. But how?

Polly was a gentle dog, a self-possessed brown dog found on the street across the river from our house and taken to a refuge. When we went to the refuge all those years ago, what caught Peter’s eye was the independence of this dog in her cage, her take-it-or-leave it attitude to us, not barking or asking for attention or to be taken home, please. The morning after we took her home, before she even knew her name, I popped out of the front door to pick up the Sunday newspaper. She didn’t bother saying goodbye or thank you, she just took off up the street, looking for something more to her taste. No hurry, just determined. I rang after her in my pyjamas in a panic, calling her name, but she didn’t know it. Finally, just before we came to the main road, she hesitated and I caught her and took her home. She stayed till yesterday – 14 years, 14 years of beauty.

We all have these stories, but I can’t bear it.

She never put a foot wrong. She was kind and considerate. She didn’t bark, except at the moon when we were up at the shack in the bush. She was beautiful. She bound us together.

I am beside myself with grief, to be honest. What grief does is split you open, letting all sort of other sadnesses and dreads spill out. For instance, I don’t know what today is for. And I am crying over Peter’s coming death as well as my own, not just Polly’s death. The universe didn’t even notice my dog. Why would it? It doesn’t notice us. I can see that. We are each of us utterly of no account. I can hardly breathe.

She knew about thirty words. She wasn’t Einstein, and said nothing back, but for a moment in time we were three beings tethered happily together, knowing what the other two were feeling and wanting.

I have two photographs in my study here where I’m sitting that show Peter and Polly and, in one of them, me with them. Our tiny mortal family. For a moment in time, together and happy. I’m looking at them now.

Everyone goes through this kind of raw misery, I know, not just on battlefields but in the house across the street, and much, much worse. Nobody escapes. I first went through it when I was a toddler and a butcher-bird killed my canary in its cage on the front verandah.

Mortality and love. But I never seem to learn.

Thank you, Polly. I know you can’t hear me. But thank you from the bottom of my heart.

Complete Article HERE!

Meet the startup “growing” mushroom caskets and urns to “enrich life after death”

— When it comes to matters of life and death, there may be a missing key ingredient of conversation: mushrooms.

Director Lonneke Westhoff, right, and founder Bob Hendrikx, left, of Dutch startup Loop Biotech display one of the cocoon-like coffins, grown from local mushrooms and up-cycled hemp fibres, designed to dissolve into the environment amid growing demand for more sustainable burial practices, in Delft, Netherlands, Monday, May 22, 2023.

By Li Cohen

A new startup has found that fungi can go beyond filling people’s plates while they are alive. They can also be used to take care of their bodies once they’re dead. The company, Loop Biotech, is “growing” coffins and urns by combining mycelium – the root structure of mushrooms – with hemp fiber.

The founders of the company say they want to “collaborate with nature to give humanity a positive footprint,” a goal that is difficult to achieve with today’s common burial practices.

A study published last year in Chemosphere, a peer-reviewed scientific journal, found that cemeteries can be potential sources of soil and water contamination, with people in urban areas that live close to packed cemeteries are most at-risk of those effects. Heavy metals are among the pollutants that can leach into the soil and water, the study found.

And even if people opt for cremation, that process emits “several pollutants,” including carbon monoxide, nitrogen oxides and sulfur dioxide, the authors of the study said.

Shawn Harris, a U.S. investor in Loop Biotech, told the Associated Press that the startup is a way to change that situation.&

“We all have different cultures and different ways of wanting to be buried in the world. But I do think there’s a lot of us, a huge percentage of us, that would like it differently,” he said. “And it’s been very old school the same way for 50 or 100 years.”

Loop Biotech offers three options, all of which they say are “100% nature” – a “Living Cocoon” that looks like a stone casket, a “ForestBed,” which they say is the “world’s first living funeral carrier” that looks like a thin open-top casket covered with moss in its bed, and an urn for those who prefer to be cremated that comes with a plant of choice to sprout up from the ashes.

All of these items, the Dutch company says, are “grown in just 7 days” and biodegrade in only 45 days once they are buried.

“Instead of: ‘we die, we end up in the soil and that’s it,’ now there is a new story: We can enrich life after death and you can continue to thrive as a new plant or tree,” the startup’s 29-year-old founder Bob Hendrikx told the Associated Press. “It brings a new narrative in which we can be part of something bigger than ourselves.”

Along with being more environmentally friendly than traditional burials, the products are also cheaper, ranging from about $200 to just over $1,000. A metal burial casket costs, on average, $2,500, according to the National Funeral Directors Association’s 2021 report, and a cremation casket and urn combined cost an average of about $1,600. Wood burial caskets cost even more, about $3,000.

For now, Loop Biotech is making about 500 coffins or urns a month, and ships them only across Europe, the AP reported.

“It’s the Northern European countries where there is more consciousness about the environment and also where there’s autumn,” Hendrikx said. “So they know and understand the mushroom, how it works, how it’s part of the ecosystem.”

Complete Article HERE!

The parting gift from my dying friend was an extraordinary act of selfless compassion

— In the hospital room I lost it. I stood there awkwardly with wet eyes. And then something incredible happened

We are raised to be stoic in the presence of the dying, when our instinct is the opposite.’

By

The word that our old friend was about to die travelled as quickly as a Mallee scrub fire. He’d been medically evacuated home from overseas a week or so earlier. He was now in hospital with his family about him, not very responsive and unable to talk.

“You should get there quickly. He might only have a day or two.”

There was disbelief and shock. I’d last seen him across a cafe table in Glebe three months earlier where he was characteristically ebullient. He enthused about his plans overseas for the years ahead, and spoke of his love for his children and grandchildren.

He gave me four boxes of antique books.

“I don’t need stuff where I’m going,’’ he said. He meant overseas. His words now seem unintentionally prescient.

The sadness I felt when I heard of his terminal decline was largely about his now unrealised – and cruelly thwarted – plans. Also, I just couldn’t – still can’t – foresee a world without this man, one of the bravest, most forthright, irreverent, passionate and generous people I’ve known.

Last year in this space I wrote about the importance – and occasional fickleness – of “mateship’’ and male friendship. I wrote how “two of my most important friendships have been with men who are both 20 years older than me’’.

“Both are intensely creative and passionate, have done amazing things while continuing, as their 80s approach, to live compelling lives that have been marked by courage and iconoclasm, sensitivity, tragedy, devastating loss, success, disappointment and, not least, a desire to do good. They’ve gently guided me and been there (each with a sixth sense, almost, that told them I was troubled) when life has cut up rough.’’

This was one of the men I had referred to. He’d long been around for me as a mentor – on how to be genuine, how to be true to your beliefs and art, and especially on how to learn to not give a damn about the critics and the knockers. He’d been there to counsel me through the grief associated with my parents’ deaths. He’s the type of bloke who texts when your team wins – or loses – big. Who always asks after – even offers to mind – your dogs.

When serious illness struck my family a few years ago, never a week passed without him checking in. Urging me to hope. For hope and optimism were always his propellants. Publicly at least.

And so I drove out of Sydney on one of those glorious, crisp autumn mornings under a crystalline sky of the gentle blue you might find on a bolt of shirt cotton in the tailor’s window. It was an air-punch morning. One on which to celebrate life. And I was driving to a regional hospital to say goodbye to a dear friend who, although 77, was Peter Pan incarnate to me and so many others. I was counselling myself as I drove to keep it together. For him. For how much do the dying fear what’s next and become even more afraid when their anguish is reflected in our eyes and responses? We are raised to be stoic in their presence, when our instinct is the opposite.

It was on a day like this, 25 years earlier, we’d first met over a long lunch in Sydney where I’d come, as a newspaper reporter, to write a profile about him. We’d been true mates ever since. Although I do wonder at the equality of our friendship; he always seemed more there for me than I for him. Yes, we talked often about the tragic death of his adult son. But I could offer him nothing, then, because I had never experienced any such loss. I could not reciprocate the hope he’d always urged in me. For it was already hopeless. I could only lend a caring, passive ear to his pain. I don’t know how he survived that. Testimony to an old soldier’s resilience, perhaps.

And in the hospital, now, there he was in bed, diminutive now for such a robust man and wearing the pallor of imminent death. His beautiful children were about him, the room brimming with love. His eyes and his smile sparkled as they always had. He grinned as we held hands. There was time alone. I thanked him for it all. And yes, I lost it. I could do nothing but stand there awkwardly, with wet eyes, when his kids re-entered the room. I felt like an intruder.

And then something extraordinary happened.

Helped by his son, he stood on unsteady legs upon a mobility device to visit the bathroom. I gave him a stoic two-handed thumbs-up. He smiled and gestured for me to come forward. As we hugged in silence he patted me on the back as if to sooth my earlier evident distress.

It was an extraordinary act of selfless compassion, a perpetual gift if you like, from a mate who had already imparted so much to me about life and humanity. He was making sure I was OK.

He died a week later.

Complete Article HERE!

A Year in Uvalde

— How grief has warped the lives of the Uvalde shooting victims’ families and friends.

Uvalde, Texas.

By David Leonhardt and

The United States experiences so many mass shootings that journalists do not usually linger long after the attacks. Reporters and photographers move on to other stories, while the families and friends of the victims continue to grieve.

One year ago today, a gunman killed 19 children and two teachers at an elementary school in Uvalde, Texas. Tamir Kalifa, an independent photojournalist based in Austin, traveled to Uvalde shortly after the shootings — but he kept coming back. Tamir temporarily moved to Uvalde to live alongside the victims’ families, renting a 320-square-foot shipping container converted into a home.

We’re devoting today’s newsletter to some of the photographs Tamir has taken over the past year and to excerpts from his interviews with families.

“The grieving cycles do not match the media cycles,” Tamir told us. “We move on, but families don’t.”

Marking the holidays

Xavier “X.J.” Lopez, 10, loved Christmas. He loved going to Uvalde’s annual extravaganza, an event with light displays, decorations and holiday music. So this past Christmas — their first without XJ — his parents, Abel Lopez and Felicha Martinez, and his siblings went to honor him.

The soundtrack of a children’s choir played as they walked through the event. Then, they heard a loud blast that sounded like gunfire — an overloaded transformer had burst. Felicha had a panic attack and collapsed on the grass.

“These days are supposed to be happy,” she said later that evening. “But they are just reminders that our lives are torn apart.”

A distressed woman on the grassy ground being comforted by two others as a child stands nearby.
Felicha Martinez having a panic attack.

Swimming

The weekend before Tess Mata, 10, died, she told her older sister Faith that she wanted to learn how to swim. Faith was about to begin her senior year at Texas State University, where students jump into a river on campus as a graduation tradition. Tess wanted to take part with her big sister.

On her graduation day this month, Faith walked with her family to the river. Then she jumped in, clutching a photo of Tess. The photo was a sweet symbol — but also a painful reminder.

“Tess looks exactly like Faith,” Veronica Mata, their mother, said. “So the other day she came and she told me, she’s like, ‘I’m so sorry that you have to look at me every day and think of Tess.’”

A woman in the water holds a photograph to an outstretched hand above her.
Faith Mata

Visiting their graves

The cemetery where most of the victims are buried has become an anchor in the lives of their families and friends. They have gathered together for graveside birthdays and holidays. They mow the lawn, decorate the headstones and lie on the lush grass that has taken hold.

Caitlyne Gonzales, 11, who lost many of her friends in the shooting, comes to the cemetery to visit them. On a recent evening, she stopped by Jackie Cazares’s grave and played Taylor Swift music. She sang and danced and took selfies. For a moment, it was as if they were all together again.

A girl dancing with a phone near memorials.
Caitlyne Gonzales dancing.

Protests and vigils

Many of the parents have found purpose in activism. Brett Cross, the uncle of Uziyah Garcia, 10, who was raising him as a son, spent 10 days camped outside the school district offices in protest, alongside other family members and supporters. They demanded that school police officers be suspended over their role in the delayed response.

The protest ended when the district halted its school police department’s operations and placed two officials on leave.

A man on a makeshift cot outside.
Brett Cross protesting.

Family members have also testified before lawmakers on both the state and federal levels and protested beyond Uvalde. Tamir said that an image of Jackie Cazares’s parents, Javier and Gloria, at an annual gun violence vigil in Washington, D.C., surrounded by other survivors of gun violence, was one of the most powerful moments he’s witnessed.

“It’s important to see each of these family members as part of a nationwide network of people intimately affected by gun violence,” he said. “It’s one that is growing each day.”

A crowd of people with solemn faces holding candles.
A vigil for victims of gun violence.

Complete Article HERE!

Paul Simon Confronts Death, Profoundly, on ‘Seven Psalms’

— The 81-year-old songwriter ruminates on mortality, faith and meaning in an album that could be a farewell.

On a new album, Paul Simon is thinking about time, love, culture, family, music, eternity and God, striving to balance skepticism and something like faith.

By Jon Pareles

What do songwriters do when they feel death approaching? As time runs out, some choose to spend it by determinedly creating music to outlive them.

“Seven Psalms” sounds like a last testament from the 81-year-old Paul Simon. It’s an album akin to David Bowie’s “Blackstar” and Leonard Cohen’s “You Want It Darker,” which those songwriters made as mortality loomed; they each died days after the albums were released.

Their generation of singer-songwriters has dedicated itself to chronicling their entire lives, biographically and metaphorically, from youth through last words. “Blackstar” was turbulent and exploratory; “You Want It Darker” was stoically bleak. “Seven Psalms” stays true to Simon’s own instincts: observant, elliptical, perpetually questioning and quietly encompassing.

The album is constructed as a nearly unbroken 33-minute suite, nominally divided into seven songs that circle back to recurring refrains. It has places of lingering contemplation and it has sudden, startling changes; its informality is exactingly planned.

Simon begins the album in his most casual tone. Over calmly precise and rhythmically flexible guitar picking, he sings, “I’ve been thinking about the great migration.”

Almost immediately, it becomes clear that the migration is from life to death, a transition the singer is preparing to make himself. He’s thinking about time, love, culture, family, music, eternity and God, striving to balance skepticism and something like faith. “I have my reasons to doubt/A white light eases the pain,” Simon sings in “Your Forgiveness.” “Two billion heartbeats and out/Or does it all begin again?”

Simon’s songwriting has never been particularly religious. Over the years, he has drawn on gospel music for songs like “Bridge Over Troubled Water” and “Loves Me Like a Rock,” which bring religious imagery to secular relationships, and his 2011 album, “So Beautiful or So What,” had touches of Christian imagery — but also imagined “The Afterlife” as one last bureaucracy, where arrivals have to “Fill out a form first/And then you wait in a line.”

“Seven Psalms” is more humble and awe-struck. Its refrains return to, and work variations on, the album’s opening song, “The Lord.” As in the psalms of the Bible — which, as Simon notes in “Sacred Harp,” were songs — Simon portrays the Lord in sweeping ways: wondrous and terrifying, both protector and destroyer, sometimes benign and sometimes wrathful. The Lord, Simon sings, is “a meal for the poorest, a welcome door to the stranger.” Then he turns to naming 21st-century perils: “The Covid virus is the Lord/The Lord is the ocean rising.”

Much of the music sounds like solitary ruminations: Simon communing with his guitar, which has been the subtly virtuosic underpinning of most of his lifetime of songs. As his fingers sketch patterns, he latches onto melody phrases and then lets them go, teasing at pop structures but soon dissolving them. And around him, at any moment, sounds can float out of the background: additional supportive guitars, the eerie microtonal bell tones of Harry Partch’s cloud-chamber bowls, the jaunty huffing of a bass harmonica and, in the album’s final moments, the voice of his wife, Edie Brickell.

In the course of the album, Simon sings about personal distress and societal tensions. In “Love Is Like a Braid,” a song of gratitude and vulnerability, he sings, “I lived a life of pleasant sorrows until the real deal came/Broke me like a twig in a winter gale.” In “Trail of Volcanoes,” he juxtaposes youthful exploits with adult realities: “The pity is the damage that’s done/Leaves so little for amends”

Meanwhile, Simon’s tartly aphoristic side reappears in “My Professional Opinion,” a swipe at social media context collapse set to a country-blues shuffle. “All rise to the occasion/Or all sink into despair,” he sings. “In my professional opinion/We’re better off not going there.”

He ends the album — possibly his last — with a song called “Wait.” He protests, “My hand’s steady/My mind is still clear.” Brickell’s voice arrives to tell him, “Life is a meteor” and “Heaven is beautiful/It’s almost like home.” At the end, he harmonizes with her on one word, extended into five musical syllables: “Amen.” It sounds like he’s accepting the inevitable.

Complete Article HERE!