Sesame Street was talking about grief before it was cool. Okay, so talking about death and grief still may not be cool (wait, do people even say “cool” anymore? Am I showing my age?). Let’s just say this: Sesame Street was tackling this topic long before the internet was full of tools and activities for supporting grieving kids. As early as 1983 they were helping kids understand death and grief. 30 years later they are still at it, better than ever.
The first time Sesame Street really tackled death was when Mr. Hooper died in an episode that aired on Thanksgiving Day in 1983. When Will Lee, the actor who played Mr. Hooper, died of a heart attack there were many ways that Sesame Street could have handled it. Rather than shying away from the topic of death and grief, Sesame Street used this as an opportunity to do what they do best – teach. In the “Farewell, Mr. Hooper” episode, Sesame Street used Big Bird to help kids understand death and grief.
In 2010 Sesame Street and Sesame Workshop received grants through a number of defense organizations and Walmart to put together resources for children on grief and loss. Launched with a great TV special, they put together an incredible combination of resources for grieving kids and adults supporting those kids. Many of these resources are available for free viewing and download. Check out a preview of the video here of the special done with Katie Couric, Elmo, and the families of several children who have experienced losses:
Or check out the whole video by going to the PBS website HERE!:
Over the years Sesame Street has kept up this trend of tackling tough topics head on, to help kids in times where they may feel unsafe, unsure, scared or confused. After 9/11 Sesame Street helped kids with fires and emergencies in an episode on a fire at Hooper’s Store.
After Hurricane Katrina Sesame Street tackled this topic through a series of episodes about a hurricane on Sesame Street.
Love Never Dies
In 2004, 21 years after Mr. Hooper’s death on the show, Grover takes Elmo on a walk (cab ride) down memory lane. At the very start of this journey Elmo learned about Mr. Hooper and how Hooper’s Store got his name.
To this day Mr. Hooper’s picture still hangs above Big Bird’s nest and can be seen in the hurricane episodes. Thanks Sesame Street, for facing this tough topic head on. And thanks for reminding kids (and all of us) that those we love and lose remain part of us, even 30 years later.
Around this time 10 years ago, I was poised to start my first job as an oncologist when personal tragedy visited in a way that would forever change the way I would practice medicine.
I had returned from my Fulbright year at the University of Chicago, blessed with only the joys and none of the irritations of being pregnant with twins. Landing in Melbourne, I went for a routine ultrasound as a beaming, expectant parent. I came out a grieving patient. The twins were dying in utero, unsuspectedly and unobtrusively, from some rare condition that I had never heard of. Two days later, I was induced into labour to deliver the two little boys whom we would never see grow. Then I went home.
If all this sounds a little detached it is because 10 years later I still have no words to describe the total bewilderment, the depth of sorrow and the intensity of loss that I experienced during those days. Some days, I really thought my heart would break into pieces. Ten years later, the din of happy children fills our house. But what I have found myself frequently reflecting on is how the behaviour of my doctors in those days profoundly altered the way in which I would treat my patients.
An experienced obstetrician was performing my ultrasound that morning. Everything was going well and we chatted away about my new job until he frowned. Then he grimaced, pushed and prodded with the probe, and rushed out before I could utter a word. He then took me into his office and offered me his comfortable seat. Not too many pregnant women need a consultation at a routine ultrasound.
“I am afraid I have bad news,” he said before sketching a picture to describe the extent of the trouble. I thought for a fleeting moment that my medical brain would kick in and I would present him with sophisticated questions to test his assertion that the twins were gravely ill. But of course, I was like every other patient, simultaneously bursting with questions while rendered mute by shock.
I was well aware that doctors sometimes sidestepped the truth, usually with the intent of protecting the patient. I knew he could easily get away with not telling me any more until he had more information but I also knew that he knew. I read it in his face and I desperately wanted him to tell me.
I asked the only question that mattered.
“Will they die?”
“Yes,” he said, simply holding my gaze until his tears started.
As I took in the framed photos of children around his office he probably wished he could hide them all away.
“I don’t know what to say,” he murmured, his eyes still wet.
Until then, in 13 years of medical training, I had never seen a doctor cry. I had participated in every drama that life in bustling public hospitals offers but never once had I seen a doctor cry.
My obstetrician’s tears stunned me but also provided immediate comfort. They normalised the mad grief that had begun to set inside me. Yes, the doctor’s expression said, this is truly awful and I feel sad too.
“You are sure?”
“There is a faint chance that one lives but if you ask me, things look bad. You know I will do everything I can to confirm this,” he said.
The obstetrician had told the unflinching truth and in doing so almost surgically displaced uncertainty with the knowledge that I needed to prepare myself for what lay ahead. I had test after test that day, each specialist confirming the worst. I think I coped better because the first doctor had told the truth.
Two other notable things happened that week. Among the wishes that flowed, another doctor wrote me an atypical condolence note. His letter began with the various tragedies that had taken place that week, some on home soil and others involving complete strangers. “I ask myself why,” he wrote, “and of course there is no answer to why anyone must suffer.”
Until then, everyone had commiserated only at my loss – and I was enormously grateful – but here was someone gently reminding me that in life we are all visited by tragedy. All the support and love in the world won’t make you immune to misfortune, he was saying, but it will help ease the pain.
Finally, there was the grieving. I lost count of the pamphlets that were left at our door to attend support groups, counselling sessions and bereavement seminars but we were resolutely having none of it. My midwife called me out of the blue – it was a moving exchange that taught me how deeply nurses are affected too. But I didn’t need counselling, I needed time. I valued the offers but I knew that my catharsis lay in writing. I wrote myself out of suffocating grief, which eventually turned to deep sadness and then a hollow pain, which eventually receded enough to allow me to take up my job as a brand new oncologist. How I would interpret the needs of my patients was fundamentally altered now that I had been one myself.
Cancer patients are very particular about how much truth they want to know and when. I don’t decide for them but if they ask me I always tell the truth. A wife brings in her husband and his horrendous scans trigger a gasp of astonishment among even the non-oncologists.
“Doctor, will he die from this?” she asks me.
“I am afraid so,” I answer gently, “but I will do everything in my power to keep him well for as long as I can.”
It is the only truthful promise I can make and although she is distressed she returns to thank me for giving her clarity. Sometimes honesty backfires, when the patient or family later say they wanted to talk but not really hear bad news. I find these encounters particularly upsetting but they are rare and I don’t let them sway me from telling the truth.
Oncology is emotionally charged and I have never been afraid of admitting this to the very people who imbue my work with emotion. I don’t cry easily in front of patients but I have had my share of tears and tissues in clinic and contrary to my fears, this has been an odd source of comfort to patients. In his Christmas card, a widower wrote that when my voice broke at the news that his wife had died he felt consoled that the world shared his heartbreak.
It can be tricky but I try to put my patients’ grief into perspective without being insensitive. It’s extraordinary how many of them really appreciate knowing that I, and others, have seen thousands of people who are frightened, sad, philosophical, resigned, angry, brave and puzzled, sometimes all together, just like them. It doesn’t diminish their own suffering but helps them peek into the library of human experiences that are catalogued by oncologists. It prompts many patients to say that they are lucky to feel as well as they do despite a life-threatening illness, which is a positive and helpful way of viewing the world.
I will never know what kind of a doctor I might have become without the searing experience of being a patient. The twins would have been 10 soon. As I usher the next patient into my room to deliver bad news, I like to think that my loss was not entirely in vain. Complete Article HERE!
There is nothing unusual about these three girls. They are sisters. They have eyes and ears and they will remember this part of their lives forever. Taylor Ann, 9, is the oldest, and determined to speak for the others, even when it gets her in trouble. She is a smiley redhead with freckles and talks without punctuation or taking breath.
Tori is the second-oldest at 7. She is exactingly articulate, pronouncing each syllable in “e-ver-y-thing.” She has light brown hair and a slight lisp, evidence that she is growing as she speaks, her baby teeth falling out and her adult teeth growing in. Her voice is perfectly childish and curious.
Texie, 4, is the baby sister, but not the youngest sibling. That title goes to the girls’ 2-year-old brother, Junior. Texie’s placement on the second-to-bottom sibling rung sets her just high enough to grab her older sisters’ attention, but she is still something of a baby when it comes to conversation. Even so, her sporadic observations are often quite sharp. Of the three girls, Texie has the most recognizable voice when they’re all talking at once. It’s a soft garble she uses in hiccup-like bursts to coo to her stuffed animal or scream “Caaaoooolllerr the feaddderrrs!” at the ruffled bird in her coloring book. She has baby-blue eyes and platinum-blond hair, and she makes her sisters laugh.
The sound of the three of them speaking at once is not unusual. Tori and Taylor Ann bicker over the details of a story about a kitten while Texie boks like a chicken. When I ask about their oldest brother, L.J., Taylor Ann quickly gives an answer she thinks will satisfy me, and then goes back to talking about her cat. “No,” I say, clarifying my question. “How long were you with him at your house after he actually died?”
“Oh, you mean like right after he died?” The other two are quiet now. “Um, just a night. Yeah, just one night.” The distinction is meaningful because, as Taylor Ann had told me earlier, the sisters were with L.J. for a whole year after they knew he was going to die. I look at the younger girls and they’re not interested in talking about it. We’ve talked about it enough over the last three months. Every time they visit Eloise Woods, the natural-burial park where their brother is buried and where I work, they reveal a new angle of their experience of his death. Today’s angle is that they don’t feel like talking about it.
“Let’s go see L.J.,” Tori says.
“Yeah!” the other girls shriek.
We leave the coloring books on the small table between the two sheds where we always meet and walk down Cardinal Trail to visit his grave.
I was wearing hiking boots and jeans with a bloodstain on one of the belt loops when I caught the eye of the lady at the gas station.
“Going to the beach?” she asked coyly.
“No,” I said, giggling. “A cemetery.”
“Ooooooh,” she gasped, her interest piqued.
I didn’t have time to get flirty about death. I swiped my card and rushed back to my car. Just broaching the subject of what I do often turns into a lengthy discussion about the complicated politics and emotions surrounding natural burial. It’s imperative that I engage in these discussions, and most of the time I do. Word of mouth is one of the few ways people learn that they can in fact bury people in Texas without embalming, without a vault, without even a casket. They can even bury on their own land if they meet the requirements of their county and aren ’t concerned with complicating resale of the property. But such conversations are rarely brief, and I had to get to the Woods.
We weren’t sure what time the family would be arriving with L.J., the 11-year-old who had died the night before. Specifics weren’t part of the deal with his family. Though we’d known for close to a year that they would have a home funeral followed by a natural burial, we knew little else. Even the boy’s condition—why he was terminal—was discussed only vaguely by the family. All we knew was that he was in a wheelchair and that he didn’t have long to live.
Home funerals usually lead to natural burials, but not always. Most of our families employ conventional funeral homes, hold a service in a chapel and transport the body to us in the funeral home’s vehicle. We have good relationships with many funeral homes in Austin, even though we can tell their employees feel out of place when their shiny loafers step onto our roads, mulched to prevent erosion. They usually give us a couple of days’ notice before they arrive. The night L.J. died, Ellen MacDonald, my boss, the owner of Eloise Woods, emailed me at 1 a.m. telling me to show up the next morning at 8.
Every time I drive to Eloise Woods, the sun strobes on my left cheek as it passes between houses and trees. It’s a bright nuisance, just beyond the reach of my visor. I drive along Austin’s eastern edge, and once I’m past the airport and under the toll road, it’s a straight shot to the burial park. I listen to music at a loud volume, usually a certain Warren Zevon live album. I roll down my windows and daydream the rest of the way to the cemetery.
When I park at the Woods 25 minutes later, I remember that I’ve forgotten my hat and will be feeling the full heat of a June day. I complain about it to Ellen as I walk from my car. “I hardly slept last night,” she responds. “I just figured I’d get out here as early as I could to get it set up. The grave still needs to be deeper because I guess they’re bringing him in a casket now.” Under Texas law, a bare body, or one in a permeable encasement such as a shroud, must be buried at least 24 inches deep. An impermeable case, such as a casket, must be covered by at least 18 inches of earth. The first few feet of topsoil is where the most aggressive organic activity takes place, turning whatever has been buried into plant food. We had dug 2.5 feet deep, enough that L.J. in a shroud would be covered with 24 inches of soil. But a family member had offered to build a casket at the last minute, and now we needed to dig at least another foot to ensure that a full 18 inches of soil would cover his little box.
It’s about 50-50 at the Woods when it comes to shrouds vs. caskets. Only one person has been buried without any covering at all—an infant from a Hindu family. Cremation is a custom in that religion, a manner of releasing and purifying the soul, but children are considered already enlightened, and so natural burial with nothing between the body and the earth is traditional. Ellen told me she had laid rose petals on the soil before the baby was placed in the grave, a gesture in line with why someone had offered to construct a casket for L.J. Burying a child in raw dirt isn’t easy.
Ellen wore an apron with a picture of a cat wearing a chef’s hat and the words “The Chef Breathlessly Awaits Your Order” printed beneath.
“I thought it was cute, you know? Kids like cats. Something kind of fun for today,” she explained. Ellen is good at remembering what’s most important and forgetting everything else. Today was all about being there for the kids.
Ellen had no connection to funerals or burials when she bought the Eloise Woods property in 2009. She had completed a doctorate in neuroscience at Stanford University before becoming a stay-at-home mom in Austin. She was so inspired by the show Six Feet Under, where she first learned about natural burial, that she decided to get into the death business herself. She became obsessed with creating a space in Austin where people can bury their dead themselves, a place where the memory of the deceased can continue to grow with the landscape.
Ellen is the reason I got into natural burial. Her accomplishments as an industry outsider signified a shift in my profession and revealed an opportunity largely untouched by traditional industry professionals. In Wisconsin, where I received my funeral director’s license, combining the business of funeral homes and cemeteries is prohibited under the state’s anti-combination law. Due to this 80-year-old statute, I became accustomed to hearing each business condemn the other, usually over outrageously high prices.
When I got to Texas, which allows the two businesses to be combined, it became apparent that such criticisms stemmed from a shared anxiety about the future of the industry as a whole. Cheap, efficient cremations have risen in popularity since the ’90s, eating into the conventional funeral industry’s profits. Families with little interest in embalming or holding a service make it harder for funeral homes to maintain their value.
Even Houston-headquartered Service Corporation International, the nation’s largest funeral corporation, appears to be acknowledging this change of venue. In October 2014, having lost a battle to overturn Wisconsin’s anti-combo law, Service Corporation opted to sell the last of its 16 Wisconsin funeral homes, keeping the five cemeteries it owns in the state. For people in search of a final resting place for their ashes or bones, a cemetery is the only choice. Natural burial parks that are accustomed to working with families without the involvement of a funeral home make that choice easier.
The first burial I worked at Eloise Woods was for a young man in his late 20s. This last summer we buried three kids: one boy of grade-school age and two infants. There are more than 60 occupied plots in the park, a quarter of them for infants and children.
I met L.J.’s family for the first time about a month prior to his death. His three sisters attacked me with questions and whirled with an exuberance that only children seem able to bring to their first experience of death. Having never seen me or even heard my name, they grabbed my hands and Texie crawled into my arms as we set off to explore the graves.
“What happens if you are the last person on earth and everyone else dies?” Tori asked.
“I guess it would be very quiet,” I answered.
“Do you know the month and day you are going to die?” she asked. I said I did not.
“When you die, are you the same age forever?” Taylor Ann asked.
I thought about that carefully before saying “I think so,” though I also told them I was unsure. Then I asked what age they would want to be forever, and we all agreed we’d want to be somewhere in the teenage years, in the bloom of youth.
They picked the wild coreopsis that grows along the paths to put near L.J.’s gravesite. As we came upon the nearby grave of a 26-year-old man, his pensive portrait engraved on his stone, they wondered how he had died. I didn’t know, and that’s what I told them.
“My brother is going to die and come to Eloise Woods,” one of the girls said. At L.J.’s grave, their parents stood with a stroller into which was strapped their littlest brother. Jackie, their mother, looked only slightly overwhelmed and remarkably well put together. She was talking to Ellen about why she’d brought the girls. They’d been confused about L.J.’s future whereabouts, so Jackie thought it would be good for them to see the little 3-by-3-foot hole with the pile of dirt next to it. They laid rocks around the hole, and flowers inside of it.
The girls were fascinated by the wildlife of the park. It looks like a wooded campground, full of bugs, lizards and animals. Hoping to see a bunny, we walked a few more trails while they told me that L.J. slept a lot and no longer got in his wheelchair.
One of them asked me what happens when you die.
“Out here,” I said, pointing to some wildflowers, “you become a plant.”
“What!?” they yelped in confusion.
“Plants are going to grow out of his body?” Tori asked. I realized that I’d have to explain decomposition to complete the puzzle.
“Well, after we die, our bodies break down,” I stammered. I tried again: “They sort of fall apart.” It was no use. Looks of confusion and then boredom crossed their faces.
“Let’s go look for Mom,” said Taylor Ann. They took off, away from me.
They found their parents at the sheds and Ellen presented them with markers and rocks to scribble messages on for L.J. Tori wrote “Get Well Soon” on one. Texie drew a fairly sophisticated cat on another.
The more they colored, the more evident it became that L.J.’s death was an event they were preparing for in much the same way they would prepare for a birthday. To add extra excitement, the date would be a surprise, no matter how ready they thought they were.
Ellen’s cat apron was overshadowed by other sartorial matters once L.J.’s family arrived for his burial. Taylor Ann jumped out of the van barefoot and ran over to me. She had been too distracted to put on shoes before they’d left their house that morning. After parking the van, Jackie opened the door with a mixture of confusion and exhaustion on her face. She caught sight of the bare feet and became annoyed. “Where are your shoes? I told you to put on shoes!” she yelled.
Taylor Ann’s face suddenly reflected the gravity of the day, a collision of sadness and anger at having been yelled at by her mother, who had just lost a child. She burst into tears. Ellen quickly offered some extra sneakers she kept in the shed. Tori and Texie hopped out of the van wearing matching handmade black dresses with white cats on them and pink-and-blue cowboy boots. Taylor Ann stomped down Cardinal Trail toward L.J.’s grave wearing the same cat-pattern dress and borrowed sneakers five sizes too big.
The small group of guests held armfuls of sunflowers and babies. Kids ran wild while their parents alternated between quiet grief and chirping baby talk. The back door of the van remained open and unattended under a bright early-afternoon sun. Inside was a simple pine box about 4 feet long.
Jason, L.J.’s stepfather, and another man got inside the grave with shovels provided by Ellen and finished the digging that we’d been unable to complete that morning. The sisters posed with their sunflowers while I took pictures on my phone, and then they colored pictures to place inside the casket with L.J. After about half an hour, Jackie and Jason went to the van for the casket. Jackie’s face carried a look of powerful intention as they brought it to the grave and set it on the path while we all gathered around. They opened the top and laid it perpendicular across the casket, revealing little L.J. lying on his side, wrapped in a white blanket.
Everyone took turns writing on the top of the casket. The girls laid their pictures next to L.J.
A pastor wearing a rainbow sash covered in peace signs and yin-yang symbols started the ceremony. Taylor Ann, not quite grasping the mood, interrupted with an enthusiastic observation and was reprimanded loudly by Jackie. Still stinging from her earlier scolding, Taylor Ann began to pout until the pastor asked her to stand next to her. Together, they began to read a children’s poem that attempted to explain death.
The girls’ 2-year-old brother, Junior, out of his stroller for the first time I had ever seen, began to stalk the woods. While everyone stood sweating and patient, listening to the poem, Junior squatted outside the circle and began to taste the dirt. Jason alternated between chasing him and standing near Jackie, his expression lightening and darkening between the two situations. When the service was over, everyone said their goodbyes before placing L.J.’s casket into the earth.
It’s hard to explain how it felt to watch the girls embrace their dead brother in his casket. How they kissed his face and stroked his hair then delightedly shoveled dirt onto his grave. If I had to try, I would say it was like hearing a child’s first attempt to pronounce a new word. Ever afterward you hear that word differently, spoken without apprehension and full of love.
The next time I saw them I was measuring and marking plots in an open field. The girls came running at me with arms spread wide like I was someone they loved. I was ripe from working in the sun all day, but Texie clung to me like she had the first day we met. We talked about the other kids who were buried there and walked to one of their graves. Jackie asked questions about him. All the parents do this. They want the story on the kids, looking for similarities that will pull them together. I didn’t know much about the kid’s story, so I asked about L.J.’s.
At the sheds, I gave the girls the coloring books I had brought that day. Junior, red-faced and awake, rolled in the dirt. Jackie gave me the long version of L.J. ’s situation, which started with his being diagnosed with spina bifida, which isn’t a life-threatening condition. The events that led to his death began with him toppling over in his wheelchair. The accident apparently created fissures in his skull, through which cerebrospinal fluid drained. Jackie says his doctors misdiagnosed L.J.’s resulting condition for years before she finally convinced them to perform a 12-hour surgery, but it was too late to save him. He didn’t have to die, she said. She showed me pictures on her phone: L.J. with purple, puffy eyes and a zig-zag incision across the top of his skull. Then she showed me pictures of L.J. when he was healthy, with big brown eyes and a shy smile.
They don’t have the energy to file a lawsuit, but they are angry. The constant hospital visits put a huge strain on the family. They were briefly homeless, sleeping in a van in the hospital parking lot.
“That was my favorite because I got to lie down,” Taylor Ann said, smiling and drawing out “liiiiie doooown” and spreading her arms. Jackie gave her an odd smile, unsure if it was safe to laugh at her daughter’s black humor in front of me. I told Taylor Ann that what she’d said was oddly comical, and Jackie broke into a relieved smile. She said that when L.J. died, the family finally had a laugh. Home funerals, like parenting, bring unpredictable joys.
Jackie explained that after L.J. died, as they were washing him, they had pulled out his gastrostomy tube, creating a leak. They scrambled for the Krazy Glue to close the hole. They all laughed as Jackie recounted this, and the girls became giddy as they clamored to offer their favorite silly moments of the death. They told me about how L.J.’s body went floppy after he died and the girls played with his limbs like a doll. Texie had waved his hand, mimicking a lecturing adult. “I’m Dr. George, and you’re not sick,” she mimicked. The sisters burst into giggles again. I could see very clearly how deeply they loved one another, how making their mother smile and laugh was the most important thing in their world.
Jackie, flushed from the laughter, said L.J. would pull at her hair to bring her closer, right until the end. She said the girls all slept with him in the living room the night after his death. Texie told us that now he’s in Eloise Woods in a silly voice that her sisters made her repeat over and over while they laughed.
When I left that day, I cried all the way home. Complete Article HERE!
A divisive national debate over whether dying patients should have the power to end their own lives will sweep into Maine this week when the Republican-controlled state Senate begins to consider so-called “death-with-dignity” legislation.
Sen. Roger Katz’s bill, which the Republican from Augusta says the Senate could take up as early as Monday, is modeled after legislation passed in Vermont two years ago that allows physicians to provide lethal doses of medication to terminally ill patients who want to hasten their death. Katz and other supporters say those who are suffering should be free to end their lives on their terms.
“Why not have the right to say, ‘I want to go, I’ve had it’?” said 85-year-old June Wagner, whose daughter died in 2012 at the age of 54 after suffering from ovarian cancer. Her daughter lived in Washington state, which has such a law, and obtained a prescription to end her own life, but Wagner said she doesn’t know if she ultimately used it.
Maine would become the sixth state in the country with such a law if Katz’s bill passes this year, but it faces an uphill battle. Lawmakers here have repeatedly rejected similar measures and voters defeated a ballot referendum on the issue in 2000.
It has been met with fierce opposition from some religious and medical groups, including the Maine Medical Association and the American Nurses Association of Maine, who say lawmakers should focus instead on ensuring that all residents have access to proper health care that can make them comfortable in the final months of their lives. Others say they fear patients will feel the need to end their own life because they believe they’re a burden on their families.
Suzanne Lafreniere, director of the office of public policy for the Roman Catholic Diocese of Portland told lawmakers earlier this year that a person’s life must be protected “at every stage and in every condition.”
“A law permitting assisted suicide would demean the lives of vulnerable patients and expose them to exploitation by those who feel they are better off dead,” she said in her written testimony.
Brittany Maynard thrust the issue back into the national spotlight last year she ended her own life just before her 30th birthday in Oregon, the first state to legalize the practice. Maynard, who was dying of brain cancer, advocated for aid-in-dying laws in videos shared widely online.
Kandyce Powell, who opposes the bill and is executive director of the Maine Hospice Council, said she believes the proposal wouldn’t resurface so frequently if more people in Maine had proper access to end-of-life care.
Vast rural parts of the state lack hospice or palliative care that can ease a person’s suffering in the final stages of their life, Dr. James VanKirk, medical director of palliative care services at Eastern Maine Medical Center.
“I am not against people having choice. That’s what we’re all about in this country,” VanKirk said. “But I think if we’re going to give people this kind of choice … we need to make sure that they really have a choice. We need to make sure that they don’t feel like they are in a situation where there is only one option.”
Katz agreed that expanding access to health care is crucial, but palliative care may not make things bearable for everyone, he said. He stressed that his proposal includes many safeguards, including requirements that a second doctor has confirmed that the patient has a limited time to live.
He’s hopeful that the national discussion and the increased awareness of the issue over the last year will help propel his bill into law — if not this year, sometime soon.
“There are some people who have religious objections or other moral objections and I respect that,” Katz said. “But I think that most people have an open mind and are waiting to hear the debate.” Complete Article HERE!
Many recent news stories have focused on right-to-die issues — what options might we want, and what control can we exert, as we approach the end of life? When death is sudden and unexpected, there are few choices, and if there has been no preparation for this moment, events will unfold as medical and emergency staff see fit. But when illness is chronic or prolonged, or when pain, frailty and old age impact the quality of life, there are measures we can take to have our wishes respected, to share those wishes with others, and to request a dignified, comfortable death.
An NPR story last year examined why some health care providers are hesitant to discuss end-of-life measures, even with seriously ill patients. There are many reasons: not enough time; not wanting the patient to give up hope; discomfort with the topic. One suggestion has been to initiate a physician-patient discussion about end-of-life issues automatically each year. Not all patients welcome the discussion, but sometimes the increased feeling of control actually can make patients with long-term illnesses feel better. They can decide, for example, to refuse certain medical treatments. They can decide if they want “heroic measures” — feeding tubes, CPR, ventilators, defibrillators — to prolong their lives when a desirable quality of life (however one may define that) might not be possible.
Making these decisions isn’t easy, and for family members and friends, accepting these decisions may be challenging, even traumatic. In our recent NewsHour columns, we talked about Advance Directives, hospice care, and other measures designed to make — as much as possible — the end of life a more peaceful transition for the patient. But watching someone you love slip away can be so overwhelming that it is instinctive to want to do everything possible to keep that person alive, even against their own wishes. How do you accept letting go?
Where to begin
Sometimes we hear from our clients that the person they are caring for wants to discuss these matters, but they or their family members are reluctant to face the issue. Below are some ideas to help begin the process to help clarify decisions about the end of life. Experts advise that you begin by thinking and talking about values and beliefs, hopes and fears. Consult with health care practitioners when you need more information about an illness or treatment.
Consider first the questions below:
What makes life worth living?
What would make life definitely not worth living?
What might at first seem too much to put up with, but then might seem manageable after getting familiar with the situation and learning to deal with it?
If you knew life was coming to an end, what would be comforting and make dying feel safe?
What, in that situation, would you want to avoid?
How much control is important for you to have when facing a terminal illness?
Then, if you have the opportunity, and before a loved one is incapacitated, try to explore these more specific questions:
Whom do you want to make decisions for you if you are not able to make your own, on both financial matters and health care decisions? The same person might not be right for both.
What medical treatments and care are acceptable to you? Are there some that you fear?
Do you wish to be resuscitated if you stop breathing and/or your heart stops? What if there is no hope for full recovery?
Do you want to be hospitalized or stay at home or somewhere else if you are seriously or terminally ill?
How will your care be paid for? Have you overlooked something that will be costly at a time when your loved ones are distracted by grieving over your condition or death?
Will your family be prepared for the decisions they may have to make?
Write the responses down, and share with family members. To formalize the process, you can complete an Advance Directive and POLST (Physician’s Orders for Life-Sustaining Treatment). Both documents can be revised at a later date if you wish.
A note: This process is not appropriate for everyone. There may be historic, religious or cultural differences within families that affect their willingness to discuss these deeply personal matters. If it makes sense to bring up these topics, do so. If it is not something that your family is comfortable with, you might not be able to get the answers you seek. You can try again at a later time — or perhaps not at all. Families have their own dynamics, and for some, this discussion simply may not be achievable or desirable. In the case of a serious illness, events will unfold as they may. That is also a choice, and must be respected.
Even after the conversations are held and legal documents completed, reaching acceptance that a person is dying is a difficult path for the individual who is ill as well as for their family members. The person who is ill doesn’t want to cause grief. She may feel there is unfinished business within the family — a reconciliation not completed, an “I love you” never stated out loud. He may be fearful of pain, of the loss of control, of the loss of dignity. And of course family members share these fears. They may dread the grief or fear of losing this critical person in their lives. They may want to attempt the very measures — the heroic measures — that the individual specifically stated he or she does not want.
Despite the pain of grief for those we love, being able to let them go is not about our needs, nor about the physician’s need to try to heal even in the face of impossible odds. It is about what our loved ones need and want to reduce their suffering and help them die in dignity. When those wishes have been talked about, and when they are in writing, a family has the comfort and assurance that they are doing the right thing if they are asked to give permission to accept comfort measures instead of life-sustaining interventions.
A natural process sometimes occurs as an illness progresses. As death nears, many people feel a lessening of the desire to live longer. Some people describe a profound tiredness. Others may feel they have struggled as much as they have been called upon to do and will struggle no more. A family’s refusal to let go can prolong dying, but cannot prevent it. Dying, thus prolonged, can become more a time of suffering than of living.
Family members and friends may experience a similar change. At first, we may adjust to managing a chronic illness, then learn to accept a life-limiting illness, then accept the possibility of a loved one’s dying. Finally, we may see that dying is the better of two choices, and be ready to give the loved one permission to die. The dying person may be distressed at causing grief for those who love them, and, receiving permission to die can relieve their distress. There is a time for this to happen. Before that, it feels wrong to accept a loss, but after that it can be an act of great kindness to say, “You may go when you feel it is time. I will be OK.”
At the time a person is near death, sometimes touch is the best communication. Gentle stroking of a hand or a cheek, and quietly reassuring the person that you love them and that you will be all right is perhaps the most compassionate way to ease your loved one on his journey. In a situation where you are not present at the time of death, forgive yourself and know that you did the best you could to make the final hours or weeks of life peaceful and meaningful.
Each individual grieves in his or her own way and for an unpredictable amount of time—there is no “correct” way. Grief affects us emotionally, physically and spiritually. There is a deep understanding that nothing will ever be the same. Grief is most acute when someone dies or shortly thereafter, but there are also the effects of “anticipatory grief” and what is sometimes called “ambiguous loss.”
When someone has a long-term illness such as terminal cancer or Alzheimer’s or Parkinson’s disease, we may begin a grieving process long before the person passes away. Particularly when an illness causes cognitive or memory decline, we grieve the person who used to be. They were our partners, our siblings, our parents. We remember their personalities, their intelligence, energy, talent, humor. They were our best friend, companion, adversary, advisor or confidante. As those characteristics fade with increasing illness, we start grieving their loss. The body may be there, but the person has changed irrevocably. It may have been difficult, frustrating and exhausting to care for the individual, and sometimes, caregivers see death as a relief. As a consequence, for many family caregivers, there is an extreme feeling of guilt over that relief. This is not an unusual reaction, but if the emotions persist, counseling or support groups may help you get through the conflicting and troubling feelings.
For other people, there is a delay in feelings of grief, or the feelings may be buried or expressed in different ways — withdrawal, anger, escape through drugs or alcohol, or intense involvement in work. Grief reactions may be unexpected and waves of painful memories may assault you at unpredictable times. The anniversary of a person’s death or other important dates can be particularly tough. However the process unfolds, take care of yourself, cry when you need to, seek solitude if that helps, and try to give yourself the space you need to reach an even keel.
While the passing of time will not erase feelings of loss, the intensity will ease somewhat as months and years go by. If you find it too difficult to move on with your life, you may be facing situational depression. Find time to talk with a grief counselor or attend a grief support group (often available from hospice). It is very important to take good care of — and be kind to — yourself. The organizations and resources listed below, or those in your personal or faith network, may also be able to help as you move through this profound experience — one we all must face at some time in our lives. One that makes us human. Complete Article HERE!
Allows doctors to provide lethal drugs to patients with less than six months to live
Chances improved after California Medical Association dropped opposition
BY ALEXEI KOSEFF
In an emotional vote on Thursday, the California Senate advanced a controversial proposal allowing terminally ill people to seek life-ending medication.
Modeled on a law first enacted in Oregon in 1997, Senate Bill 128 would permit doctors to provide lethal drugs to patients with less than six months to live. The measure passed 23-14, over passionate objections from Republicans who argued it devalues life.
The deeply personal debate lasted for more than an hour-and-a-half, as senators shared stories of lost loved ones and their own struggles with suicidal thoughts. Democrats urged their colleagues to support a “compassionate” end-of-life option that lets people die in peace.
“I was 17 when my vibrant young mother ended a three-year struggle with metastatic cancer, and it was frankly brutal,” said Sen. Lois Wolk, D-Davis, who authored the measure.
“Her suffering was prolonged and unbearable – for her, certainly, and also for her family,” she said. “It does not have to be this way.”
While Washington and Vermont have since followed Oregon in legalizing assisted death, numerous proposals from California lawmakers have fallen short over the years in the face of vocal concerns from doctors, the Catholic Church and disability rights groups. The last major effort, by then-Assembly members Patti Berg, Lloyd Levine and Fabian Núñez in 2007, was never brought to the floor for a vote.
Proponents were buoyed this time, however, by the story of Brittany Maynard, a Bay Area woman with brain cancer who gained national attention last fall when she moved to Portland to take advantage of Oregon’s law. Her widowed husband, Dan Diaz, and mother, Deborah Ziegler, sat in the back of the Senate chamber on Thursday with a portrait of Maynard.
“The Senate vote, I feel, is an affirmation of what Brittany started,” Diaz said at a news conference following the vote. SB 128 “will not lead to more people dying. It will lead to fewer people suffering.”
Choking back tears, Ziegler said she felt Maynard’s “presence swirling around, her energy, her love.”
“I am so proud of her, and I am so proud of California senators today,” Ziegler added.
Sen. Cathleen Galgiani, D-Stockton, framed the vote as an ethical responsibility for the Senate. As medical science allows doctors to prolong life, she said, patients and their families are faced with more difficult choices.
“This bill gives guidance to someone who’s dying … about whether everything has been considered,” she said. “It will give loved ones the ability to move to their next life without guilt, without shame, and it will give loved ones the chance to say goodbye.”
Nine Republican lawmakers rose to speak against the bill. Some opposed it on religious grounds, saying the state should not make life or death decisions. Sen. Ted Gaines, R-Roseville, suggested it violates the Declaration of Independence.
“It is a total inversion of (the government’s) purpose, to transform it into an instrument of death,” he said.
Sens. Sharon Runner, R-Lancaster, and Joel Anderson, R-Alpine, confessed to grappling with a desire to die during medical crises, and asked their colleagues not to give sick people a reason to give up.
“You bet I thought about suicide. You bet I did,” Anderson said, his voice wavering. “I don’t want to do anything that the state sponsors to strip hope and add guilt to our citizens.”
Urging his colleagues not to “sanitize” the discussion, Sen. Bob Huff, R-Diamond Bar, reminded them that many doctors believe assisting in a patient’s intentional death violates their role as healers. “Reality is this is aid in killing,” he said.
A major obstacle was cleared last month when the California Medical Association dropped its long-standing opposition because of provisions that would allow physicians with moral objections to opt out of the law.
Wolk thanked the CMA for providing guidance on bill language and pointed to numerous safeguards for patients, who must be assessed by two independent physicians, provide two written and one verbal request for the lethal drugs, and wait 15 days before a doctor writes a prescription.
“It must be an affirmative, conscious act,” Wolk said.
Disability rights advocates have led the campaign against SB 128, arguing that legalizing assisted suicide would put the elderly and other vulnerable Californians in harm’s way.
“This bill … tells people with disabilities who face a terminal diagnosis, that may well prove inaccurate, that there is no dignity in our lives,” Marilyn Golden of the Disability Rights Education & Defense Fund said in a statement. “Assisted suicide is dangerous, and we are going to bring that message loud and clear to every member of the state Assembly and the governor.”
SB 128 heads next to the Assembly, where supporters are hopeful that CMA’s neutrality will ease passage. Gov. Jerry Brown, who once trained to be a Jesuit priest, has yet to weigh in publicly on the proposal, but his office confirmed on Thursday that he spoke with Maynard by phone before she died. Complete Article HERE!
Vermont artists Stephen and Gwen Huneck were married for 35 years. They never had kids, but they always had dogs, their constant companions. In his mid-30s, Stephen Huneck taught himself to carve wood. Naturally, his subject was dogs — lots and lots of dogs.
He was also a dreamer. And he dreamed of building a chapel for dogs in St. Johnsbury, Vt. “I remember when Gwen first told me that they were going to build this dog chapel,” Jon Ide, her brother, told producers Dan Collison and Elizabeth Meister. “And I thought, ‘Well, that’s kind of nutty.’ You know, dogs are great, but you’ve got to eat.”
The Hunecks made financial sacrifices and, over a period of three years, built their chapel on 150 mountaintop acres. They envisioned their Dog Mountain as a place where dog owners could come and enjoy time with their pets — and where those whose dogs had died could find comfort by leaving “notes, little pictures, photos, remembrances of pets that they had loved and lost,” Ide says.
The chapel itself — small, white, with a steeple and stained glass windows — quickly filled with thousands of notes from people paying tribute to their pets and with Stephen’s carvings. Stephen “said that the dog chapel was his largest and most personal artwork. And it really is — it’s a masterwork,” Ide says.
The Hunecks fell on hard times during the 2008 financial crisis. Tragedy followed: Stephen took his own life in 2010. Gwen struggled to keep Dog Mountain going, and died in 2013.
Nowadays Ide, her brother, is in charge of the place. He considers it “almost like a point of honor to do what we can to help Dog Mountain survive.” The place continues, he says, to be “the source of enormous healing and joy.”
You can listen to the full story by Long Haul Productions at the audio link at the top of this story. And you can hear a longer version of the documentary, as well as explore photos and learn more about Dog Mountain, at longhaulpro.org. Complete Article HERE!