The 1st unConference is in Estes Park, Colorado September 18-21, 2015. Join Us!
2015 End of Life Practitioners Collective unConference
“An Anam Cara Gathering”
“When you connect with another person and become completely open and trusting with that individual, your two souls begin to flow together. Should such a deep bond be formed, it is said you have found your Anam Cara or soul friend…” ~ Jen Donovan
And here’s the best part; any of my followers/subscribers will be given $10 off their ticket (link to get ticket: endoflifepro.org) and as a thank you, after the conference, they will count up the people who attended from my audience and donate $10 for every person who came, to my organization/work.
Please, take a moment of your time to check this out. You’ll be so glad that you did.
IT IS easy to forget that adultery was a crime in Spain until 1978; or that in America, where gay marriage is allowed by 37 states and may soon be extended to all others by the Supreme Court, the last anti-sodomy law was struck down only in 2003. Yet, although most Western governments no longer try to dictate how consenting adults have sex, the state still stands in the way of their choices about death. An increasing number of people—and this newspaper—believe that is wrong.
The argument is over the right to die with a doctor’s help at the time and in the manner of your own choosing. As yet only a handful of European countries, Colombia and five American states allow some form of doctor-assisted dying. But draft bills, ballot initiatives and court cases are progressing in 20 more states and several other countries (see article). In Canada the Supreme Court recently struck down a ban on helping patients to die; its ruling will take effect next year. In the coming months bills will go before parliaments in Britain and Germany.
The idea fills its critics with dismay. For some, the argument is moral and absolute. Deliberately ending a human life is wrong, because life is sacred and the endurance of suffering confers its own dignity. For others, the legalisation of doctor-assisted dying is the first step on a slippery slope where the vulnerable are threatened and where premature death becomes a cheap alternative to palliative care.
These views are deeply held and deserve to be taken seriously. But liberty and autonomy are sources of human dignity, too. Both add to the value of a life. In a secular society, it is odd to buttress the sanctity of life in the abstract by subjecting a lot of particular lives to unbearable pain, misery and suffering. And evidence from places that have allowed assisted dying suggests that there is no slippery slope towards widespread euthanasia. In fact, the evidence leads to the conclusion that most of the schemes for assisted dying should be bolder.
Nothing is hurt, nothing is lost
The popular desire for assisted dying is beyond question. The Economist asked Ipsos MORI to survey people in 15 countries on whether doctors should be allowed to help patients to die, and if so, how and when. Russia and Poland are against, but we find strong support across America and western Europe for allowing doctors to prescribe lethal drugs to patients with terminal diseases. In 11 out of the 15 countries we surveyed, most people favoured extending doctor-assisted dying to patients who are in great physical suffering but not close to death.
No wonder that, just as adultery existed in Spain before 1978, so too many doctors help their patients die even if the law bans them from doing so. Usually this is by withdrawing treatment or administering pain-relief in lethal doses. Often doctors act after talking to patients and their relatives. Occasionally, when doctors overstep the mark, they are investigated, though rarely charged. Some people welcome this fudge because it establishes limits to doctor-assisted dying without the need to articulate the difficult moral choices this involves.
But this approach is unethical and unworkable. It is unethical because an explicit choice that should lie with the patient is wholly in the hands of a doctor. It is hypocritical because society is pretending to shun doctor-assisted dying while tacitly condoning it without safeguards. What may turn out to be more important, this system is also becoming impractical. Most deaths now take place in hospital, under teams of doctors who are working with closer legal and professional oversight. Death by nods and winks is no good.
Better is to face the arguments. One fear is that assisted dying will be foisted on vulnerable patients, bullied by rogue doctors, grasping relatives, miserly insurers or a cash-strapped state. Experience in Oregon, which has had a law since 1997, suggests otherwise. Those who choose assisted suicide are in fact well-educated, insured and receiving palliative care. They are motivated by pain, as well as the desire to preserve their own dignity, autonomy and pleasure in life.
Another fear is that assisted dying will downgrade care. But Belgium and Holland have some of the best palliative care in Europe. Surveys show that doctors are as trusted in countries with assisted dying as they are in those without. And there are scant signs of a slippery slope. In Oregon only 1,327 people have received lethal medicine—and just two-thirds of those have used it to take their lives. Assisted dying now accounts for about 3% of deaths in the Netherlands—a large number—but this is less a rush to assisted dying than the coming to light of an unspoken tradition in which doctors quietly brought their patients’ lives to an end.
Wear no forced air of solemnity or sorrow
How, then, should assisted dying work? For many the model is Oregon’s Death with Dignity Act. It allows (but does not oblige) doctors to prescribe lethal drugs to patients with less than six months to live who ask for them, if a second doctor agrees. There is a cooling-off period of 15 days.
We would go further. Oregon insists that the lethal dose is self-administered, to avoid voluntary euthanasia. To the patient the moral distinction between taking a pill and asking for an injection is slight. But the practical consequence of this stricture is to prevent those who are incapacitated from being granted help to die. Not surprisingly, some of the fiercest campaigners for doctor-assisted dying suffer from ailments such as motor neurone disease, which causes progressive paralysis. They want to know that when they are incapacitated, they will be granted help to die, if that is their wish. Allowing doctors to administer the drugs would ensure this.
Oregon’s law covers only conditions that are terminal. Again, that is too rigid. The criterion for assisting dying should be a patient’s assessment of his suffering, not the nature of his illness. Some activists for the rights of the disabled regard the idea that death could be better than a chronic condition as tantamount to declaring disabled people to be of lesser worth. We regard it as an expression of their autonomy. So do many disabled people. Stephen Hawking has described keeping someone alive against his wishes as the “ultimate indignity”.
One exception to this distinction should be children. The decision of whether to endure chronic conditions should be left until adulthood. But, as with adults, children facing imminent death from terminal diseases should, in consultation with their parents and doctors, have the right to be spared their last agonising hours.
The hardest question is whether doctor-assisted dying should be available for those in mental anguish. No one wants to make suicide easier for the depressed: many will recover and enjoy life again. But mental pain is as real as physical pain, even though it is harder for onlookers to gauge. And even among the terminally ill, the suffering that causes some to seek a quicker death may not be physical. Doctor-assisted death on grounds of mental suffering should therefore be allowed.
Because patients’ judgments may be ill-informed and states of mind can change, especially among the mentally ill, society should help people to die only when safeguards are in place. These should include mandatory counselling about alternatives, such as pain relief, psychotherapy and palliative care; a waiting period, to ensure that the intention is enduring; and a face-to-face consultation with a second, independent medical expert to confirm the patient’s prognosis and capacity. In cases of mental suffering the safeguards should be especially strong.
The most determined people do not always choose wisely, no matter how well they are counselled. But it would be wrong to deny everyone the right to assisted death for this reason alone. Competent adults are allowed to make other momentous, irrevocable choices: to undergo a sex change or to have an abortion. People deserve the same control over their own death. Instead of dying in intensive care under bright lights and among strangers, people should be able to end their lives when they are ready, surrounded by those they love. Complete Article HERE!
Sheila Kitzinger, the natural childbirth activist who died in April, pioneered the idea of birth plans. Her daughters, Celia and Jenny, describe how their mother made a death plan – so she could die at home according to her own wishes
By Celia and Jenny Kitzinger
Sheila Kitzinger, the writer and natural childbirth campaigner.
Our mother, Sheila Kitzinger, champion of women’s rights in childbirth, died in April. In writing her own fantasy obituary for a newspaper many years earlier, she imagined dying at the height of her powers: “She died as she would have wished, flat on her back on a table with her legs in the air, in front of a large audience, demonstrating with vigour the dangers of making women lie down, hold their breath till their eyes bulge and strain as if forcing through a coconut to push a baby out. She claimed that treating the second stage of labour as a race to the finishing post … could result in cardiac arrhythmia and even a stroke. She made her point.”
Rather than the melodramatic early death she conjured up here, Sheila died quietly at home surrounded by her family, at the age of 86.
Sheila spent her life campaigning for autonomy and choice in childbirth and challenging the medicalisation of birth. She pioneered birth plans to support women in making their own decisions. When it came to dying, she expressed the same values of choice and control, and she planned ahead. She appointed one of our sisters, Tess, with lasting power of attorney for health and welfare and also wrote an advance decision. This preparation was invaluable in ensuring that her choices were respected and in allowing her to die at home as she wanted.
Being at home was essential to her idea of a “good death”. She wanted to be in familiar surroundings, on her own territory, with the support of those who knew her. She particularly did not want to go into hospital, aware as she was of the cascade of interventions that can befall people at the end of life, just as they can women in childbirth.
In her autobiography, she records that Cicely Saunders, founder of the modern hospice movement, once said to her backstage at a conference where they were both speaking, “You and I are doing the same work.”
Her concerns about hospital treatment had also been cruelly refined and reinforced by our family experience of the treatment of our sister, Polly, who was severely brain injured in a car crash six years ago. We were all very aware of how institutions have their own systems, policies and agendas that can strip control from the individual.
Sheila wrote about her own mother’s death decades earlier. Following a brain haemorrhage, her mother could no longer swallow, and Sheila resisted a feeding tube. “I consulted Father and we both agreed, ‘No. She would want to be at home. She wouldn’t want invasive procedures.’ Later he told me that he wished he had the courage to care for his father that way when he was dying. Instead, he had him admitted to hospital and everything was done to prolong his life by every means possible. Looking back on it, he thought it was wrong, and now he felt guilty.”
At 86, Sheila had cancer and many other diseases of old age. After the first bout of cancer a year earlier, she had accepted treatment. When the illness returned she declined further investigation or intervention.
As her health declined she lost interest in eating or drinking – it was painful to watch her become progressively thinner and more frail. At times she was able to enjoy someone reading to her, she would gamely invite the family join her to sip a little sparkling wine or eat a chocolate, and the ritual of tea at 5pm still seemed to give her pleasure. But it was deeply distressing to witness how vulnerable she became.
In the last few months of her life, Sheila stopped talking about planning her next book and talked with us about her wishes for her death. She also revisited and confirmed the short advance decision (AD) she had written some years earlier. This was a single paragraph (signed and witnessed, and legally binding on her carers and medical professionals) which declared: “If the time comes when I can no longer take part in decisions for my own future, I want to receive whatever quantity of drugs can keep me free from pain or distress, even if death is hastened. If there is no reasonable prospect of recovery I do not consent to be kept alive by artificial means. I do not wish to be transferred to hospital and should like to die in my own bed.”
Except for the last few days, when she was unconscious, Sheila was able to communicate her wishes herself. But her AD was immensely valuable in supporting her choices. Her GP surgery tried to insist, a few weeks before she died, that Sheila should be transferred to hospital after a “mini-stroke”. She said no. The GP questioned her mental capacity to refuse hospitalisation. We read out her AD and she stayed home.
Later her AD was useful when another doctor was considering transferring Sheila to hospital to clarify her diagnosis and it helped her to avoid various interventions. One of the last whole sentences Sheila said was, “I decline antibiotics if I get pneumonia” and, later, she nodded when offered morphine. Anyone in doubt about her capacity to make her own choices, or concerned to ensure they had done everything possible as a healthcare professional, could read her AD or talk with her LPA for health and welfare – and be empowered to provide “person-centred care” with confidence that they knew what her wishes were.
Sheila Kitzinger’s simple cardboard coffin at her home, decorated by her family with peacock feathers and pictures of birds.
A home death is not right for everyone. We were lucky that Sheila’s symptoms were well controlled, and that’s not always possible at home. The whole situation placed many demands and stresses on the whole family. However, once it was (belatedly) agreed that she was at the “end of life” we were provided with well-coordinated NHS support. It also helped that we are a large family so when one of us was at the end of her tether, another could step in.
This support structure allowed Sheila to die, as she had lived, on her own terms. It also allowed us to have positive memories of the last weeks of her life – and that now helps us with our grief.
Sheila’s burial reflected the values she had lived by – and was shaped by her own distinct choices. She was critical of the “business” of funerals and preferred not to have her body handed over to the professionals. Instead, the day after she died, we – her daughters – washed and dressed her body one last time and carried her downstairs to place her in a bright orange cardboard coffin, decorated with peacock feathers.
Sheila opted for a simple, private burial – much to the surprise of some friends and colleagues who had expected an opulent public funeral extravaganza. Sheila wanted her body buried “without fuss”. So we carried her coffin from the house, to a tune from our time in Jamaica in the 1960s, placed it in the back of a car, and drove to a woodland burial ground. We lowered the coffin into the ground, scattered it with sprigs of rosemary and camellia blossom from our lovely garden and read some of Sheila’s own poetry:
“After the soaring, a peace like swans settling on the lake After the tumult and the roaring winds,
Deborah Ziegler holds a photo of her daughter, Brittany Maynard, with her husband Gary Holmes after the California Senate passed a bill allowing physicians to assist in the death of terminally ill patients.
LESS THAN a month before she died, Brittany Maynard posted a video explaining her decision to move to Oregon to take advantage of the state’s law allowing terminally ill people to end their own lives. Maynard, 29, had been diagnosed with an aggressive and terminal brain cancer and said she wanted to die on her own terms. “I hope to pass in peace,” she said. Her video, viewed more than 9 million times in the first month, and her death, after she ingested medication prescribed by a doctor, helped fuel a national movement for “death with dignity.”
In addition to Oregon, four other states — Washington, Vermont, New Mexico and Montana — allow physicians to provide aid in dying. After Ms. Maynard’s death in November, lawmakers in more than 20 states and the District — backed by advocates Compassion and Choices, and the Death with Dignity National Center — introduced end-of-life legislation. In many cases, the bills are pending; in states where they didn’t advance, including Maryland, lawmakers vowed to try again. A recent Gallup poll showed nearly seven in 10 Americans agree that terminally ill adults should have the right to medical assistance in bringing about a peaceful death.
Meanwhile, D.C. Council member Mary M. Cheh (D-Ward 3) has sponsored a bill modeled on Oregon’s law for the nation’s capital. That has the potential to bring Congress into the debate.
The issue stirs strong emotions. Some opponents, including the Catholic Church, cite religious or moral grounds, seeing any form of assisted dying as anathema to teachings that life is never to be taken. Some physicians believe the practice violates their oath only to heal, and some disability rights activists fear that they will be vulnerable to abuses. Others warn of a slippery slope to euthanasia.
Oregon’s 18 years of experience do not confirm any of these fears. Enacted in 1997, Oregon’s Death with Dignity Act allows terminally ill adults who are residents of the state to obtain and use prescriptions from their physicians for self-administered lethal doses. Stringent protections include a life expectancy of less than six months, a finding of mental capability, a concurring opinion from a second doctor, mandatory discussion of hospice and other options, waiting periods and more.
Oregonians have made sparing use of the law, with 859 deaths as of Feb. 2 . The state collects data on each case, and there have been no reports of coerced or wrongly qualified assisted deaths. The typical patient is about 71, suffering from terminal cancer, well-educated, with health insurance and enrolled in hospice. About one-third of prescriptions were never used, suggesting some terminally ill people are comforted by knowing they have an alternative to extensive suffering should they need it.
Such suffering has been described by Diane Rehm, the WAMU-FM radio host. Her husband, incapacitated by Parkinson’s disease and without an Oregon-style option, starved himself to death over an agonizing 10 days. Barbara Blalock, a Rockville doctor, said at a joint Maryland legislative committee hearing that she has had patients ask, “Is there a way that we can avoid intolerable suffering at the end of life?” Dr. Blalock said she often has to say no, “and I always felt as a physician I was failing them in some way.” Ms. Maynard said of her decision: “I do not want to die. But I am dying. And I want to die on my own terms.”
Death with dignity laws need to be carefully thought out, written and monitored. Oregon and the states that followed its example show that such care is possible. We hope the rest of the nation catches up with this humane option for life’s end. Complete Article HERE!
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.
Then
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.
Now
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.
‘My obstetrician’s tears stunned me but also provided immediate comfort. They normalised the mad grief that had begun to set inside me.’
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!
