A ‘Code Death’ for Dying Patients

By JESSICA NUTIK ZITTER, M.D.

Sadly, but with conviction, I recently removed breathing tubes from three patients in intensive care.

As an I.C.U. doctor, I am trained to save lives. Yet the reality is that some of my patients are beyond saving. And while I can use the tricks of my trade to keep their bodies going, many will never return to a quality of life that they, or anyone else, would be willing to accept.

Code DeathI was trained to use highly sophisticated tools to rescue those even beyond the brink of death. But I was never trained how to unhook these tools. I never learned how to help my patients die. I committed the protocols of lifesaving to memory and get recertified every two years to handle a Code Blue, which alerts us to the need for immediate resuscitation. Yet a Code Blue is rarely successful. Very few patients ever leave the hospital afterward. Those that do rarely wake up again.

It has become clear to me in my years on this job that we need a Code Death.

Until the early 20th century, death was as natural a part of life as birth. It was expected, accepted and filled with ritual. No surprises, no denial, no panic. When its time came, the steps unfolded in a familiar pattern, everyone playing his part. The patients were kept clean and as comfortable as possible until they drew their last breath.

But in this age of technological wizardry, doctors have been taught that they must do everything possible to stave off death. We refuse to wait passively for a last breath, and instead pump air into dying bodies in our own ritual of life-prolongation. Like a midwife slapping life into a newborn baby, doctors now try to punch death out of a dying patient. There is neither acknowledgement of nor preparation for this vital existential moment, which arrives, often unexpected, always unaccepted, in a flurry of panicked activity and distress.

We physicians need to relearn the ancient art of dying. When planned for, death can be a peaceful, even transcendent experience. Just as a midwife devises a birth plan with her patient, one that prepares for the best and accommodates the worst, so we doctors must learn at least something about midwifing death.

For the modern doctor immersed in a culture of default lifesaving, there are two key elements to this skill. The first is acknowledgment that it is time to shift the course of care. The second is primarily technical.

For my three patients on breathing machines, I told their families the sad truth: their loved one had begun to die. There was the usual disbelief. “Can’t you do a surgery to fix it?” they asked. “Haven’t you seen a case like this where there was a miracle?”

I explained that at this point, the brains of their loved ones were so damaged that they would most likely never talk again, never eat again, never again hug or even recognize their families. I described how, if we continued breathing for them, they would almost definitely be dependent on others to wash, bathe and feed them, how their bodies would develop infection after infection, succumbing eventually while still on life support.

I have yet to meet a family that would choose this existence for their loved one. And so, in each case, the decision was made to take out the tubes.

Now comes the technical part. For each of the three dying patients, I prepped my team for a Code Death. I assigned the resident to manage the airway, and the intern to administer whatever medications might be needed to treat shortness of breath. The medical student collected chairs and Kleenex for the family.

I assigned myself the families. Like a Lamaze coach, I explained what death would look like, preparing them for any possible twist or turn of physiology, any potential movements or sounds from the patient, so that there would be no surprises.

Families were asked to wait outside the room while we prepared to remove the breathing tubes. The nurses cleaned the patients’ faces with warm, wet cloths, removing the I.C.U. soot of the previous days. The patients’ hair was smoothed back, their gowns tucked beneath the sheets, and catheters stowed neatly out of sight.

Then, the respiratory therapist cut the ties that secured the breathing tube around the patients’ neck. As soon as the tubes were removed and airways suctioned, families were invited back into the room. The chairs had been pulled up next to the bed for them and we fell back into an inconspicuous outer circle to provide whatever medical support might be needed.

I stood in the back of the room, using hand motions and quietly mouthing one-word instructions to my team as the scene unfolded — another shot of morphine when breathing worsened, a quick insertion of the suction catheter to clear secretions. We worked like the well-oiled machine of any Code Blue team.

Of those three Code Death patients, one died in the I.C.U. within an hour of the breathing tube’s removal. Another lived for several more days in the hospital, symptoms under watch and carefully managed. The third went home on hospice care and died there peacefully the next week, surrounded by family and friends.

I would argue that a well-run Code Death is no less important than a Code Blue. It should become a protocol, aggressive and efficient. We need to teach it, practice it, and certify doctors every two years for it. Because helping patients die takes as much technique and expertise as saving lives.

Complete Article HERE!

Aid In Dying, Part 1

“I asked my audience to keep that in mind that it’s this social dimension of the dying process that gives us the best context for understanding this delicate issue. I suggested that if we kept our discussion as open-ended as possible we wouldn’t be tempted to reduce the whole affair to the single issue of assisted suicide, because that does nothing but polarize the debate.”

There was a wonderful front-page article in the February 2, 2014 edition of the New York Times titled: ‘Aid in Dying’ Movement Takes Hold in Some States. The most astonishing about the article was that, not too long ago, this sort of even-handed presentation in “the paper of record” would have been unthinkable. I’m so glad this is changing. Because, despite where you stand on the issue, no one benefits from tamping down the discussion.AidinDyingphoto_medium

I talk about assisted dying frequently. Despite being the hot button issue it is, there’s a remarkable amount of common ground amongst the varying positions if one looks for it.

I was conducting a workshop on this very topic recently and before I could really get started, a man stood up and declared: “I need to say upfront that I am diametrically opposed to assisted suicide of any kind, including physician assistance. There’s just too much room for abuse. I can’t help but think about how things would be if we started eliminating the people we think are no longer productive. You could be sure that old and disabled people would be the first to get the ax. I’m afraid the tide of this culture’s prejudice against age and infirmity would overwhelm them. It is such a slippery slope that I don’t think we ought to venture out onto it.”

Not five minutes into the workshop and I already knew it was gonna be a bumpy ride. I asked the fellow for his indulgence and asked him to allow me to continue.

death midwifeI began by saying: “It’s my experience that very few people prefer to die alone. Most dying people express a desire to have company in their dying days. And given the option, most everyone would prefer the company of friends and family to that of strangers. Very few of us have the personal strength to walk this unfamiliar territory alone. We’re social beings, after all, and there’s nothing about dying that changes that.”

I asked my audience to keep in mind that it’s this social dimension of the dying process that gives us the best context for understanding this delicate issue. I suggested that if we kept our discussion as open-ended as possible we wouldn’t be tempted to reduce the whole affair to the single issue of assisted suicide, because that does nothing but polarize the debate.

I turned to address the man who stood up at the beginning of the workshop. “I thought it curious, sir, that you took the time to assert that you are opposed to assisted suicide of any kind, including physician assisted suicide. Is that all you thought we were going talk about?”

“Well, yes, that’s exactly what I thought. Isn’t that what assisted dying means?”

“Not the way I understand it.” I said. “It’s true, acting to hasten death in the final stages of a terminal illness falls under the general heading of assisted dying, but I don’t think it defines the concept. In fact, I believe that reducing the concept of assisted dying to a single issue would be a mistake for two reasons. First and foremost, it discounts all the other more common modes of assistance regularly being given to dying people across the board. And second, this more extraordinary form of assistance is relatively uncommon. So you can see why I’m so adamant about keeping the discussion inclusive and open ended. It just wouldn’t be balanced otherwise. I believe that the issue of proactive dying can become sensationalized, distorted, and even freakish if this option is not presented as an integral part of the entire spectrum of end of life care.”assisted_dying

I think a good metaphor for what I was talking about is the midwife. Like a birth midwife, a death midwife assists and attends in a myriad of ways. A midwife is the one who is most present and available to the dying person, the one who listens, comforts, and consoles. But a midwife may also bring an array of other basic skills, like expertise in the care of the body such as bathing, waste control, adjusting the person’s position in bed, changing bedclothes, mopping the person’s brow, or keeping the person’s eyes and mouth lubricated. A midwife may also be proficient in holistic pain management and comfort care such as massage, breath work, visualization, aromatherapy, relaxation, and meditation.

A midwife may take responsibility for maintaining a tranquil and pleasing dying environment. Often this means arranging the person’s home or room, not only in terms of the practical considerations, but also in terms of the aesthetic as well. This may include arranging flowers and art, reading aloud or playing music softly. A death midwife, like a birth midwife takes the lead role in the caring for and comforting the one who is dying. Without this kind of compassionate presence, few people would have the opportunity to achieve a good death.

Another guy spoke up: “That’s all fine and good, but I was hoping that we were going to talk about, you know, the more proactive aspects of assisted dying. I mean, I know I’m gonna want help in bringing my life to a close when the time comes and no amount of breathing exercises and adjusting pillows is gonna cut it. Am I making myself clear?”

“I understand what you are saying. You want some practical advice on how to end your life if the need arises.” I responded. “I can assure you that we well get to that. I just wanted to make sure that we all appreciate the context of our discussion.”

physician aid in dyingAn elder woman in the first row raised her hand. “I’m glad that you’re taking the time to help us frame the debate in this way because I’m confused. I have the same reservations as the first gentleman who spoke, but now I’m not sure my concerns are warranted. Maybe I need more time to figure out what it is we’re talking about when you say, ‘proactive dying.’ Is it euthanasia, assisted suicide, self-deliverance, what? And why so many different terms?”

“You make a very good point, ma’am. Unfortunately, there is no agreement, even among experts, about a common vocabulary for this debate. And thus the public discourse often generates a whole lot more heat than light. And the topic of proactive dying will continue to be a hot-button issue until we can come to a consensus about the parameters of the debate, and that seems like a long way off.”

I went on to say that I have trouble with most all the terms commonly used in the debate. I consider euthanasia is much too technical. Curious enough, at one time this word meant an easy, good death. Now, unfortunately, it is defined as mercy killing, a classic example of how language can be corrupted.

I also try to avoid using the term “assisted suicide” when I talk about someone hastening his or her death in the final stages of a terminal illness. The word suicide is inappropriate in this instance, because suicide usually denotes a desperate cry for help, which is rarely if ever the case for those facing the imminent end of life.falling leaf

Finally, I don’t much like the term self-deliverance either. It’s just one of those vague, contemporary euphemisms that does nothing to clear the air. In fact, when polled, most people haven’t a clue what self-deliverance means. I prefer the simpler, more straightforward terms ‘proactive dying’ or ‘aid in dying.’

Another woman spoke up: “I’m having a hard time with this too. I mean, it’s all so confusing and there are so many subtleties to consider. I guess I’d have to say that I’m not particularly comfortable with the notion of assisted suicide or, as you call it, aid in dying. But I wonder if I’d feel differently if I were in unbearable pain. And taking someone off life support; isn’t that technically assisted dying? Where do we draw the line between what is acceptable and what isn’t? And who is going to make that determination?”

I responded: “The simple answer is that doctors and lawyers are generally the ones who make the call. That is unless individuals are granted the right to choose. But even then, medical and legal concerns can and do trump a person’s wishes.”

(We will take up this topic again next time. I’ll discuss how best to approach one’s physician about aid in dying among other things.)

Catholic rebel Kueng, 85, considers assisted suicide

By Tom Heneghan

Hans Kueng, Roman Catholicism’s best known rebel theologian, is considering capping a life of challenges to the Vatican with a final act of dissent – assisted suicide.

KüngKueng, now 85 and suffering from Parkinson’s disease, writes in final volume of his memoirs that people have a right to “surrender” their lives to God voluntarily if illness, pain or dementia make further living unbearable.

The Catholic Church rejects assisted suicide, which is allowed in Kueng’s native Switzerland as well as Belgium, the Netherlands, Luxembourg and four states in the United States.

“I do not want to live on as a shadow of myself,” the Swiss-born priest explained in the book published this week. “I also don’t want to be sent off to a nursing home … If I have to decide myself, please abide by my wish.”

Kueng has championed reform of the Catholic Church since its 1962-1965 Second Vatican Council, where he was a young adviser arguing for a decentralized church, married priests and artificial birth control. The Council did not adopt these ideas.

A professor at the German university of Tuebingen since 1960, Kueng was stripped by the Vatican of his license to teach Catholic theology in 1979 after he questioned the doctrine of papal infallibility and ignored Vatican pressure to recant.

The university responded by making him a professor of ecumenical theology, securing him a post from which he wrote dozens of books, some of them best-sellers, and many articles.

NOT LIKE JOHN PAUL OR MUHAMMAD ALI

In the third and final volume of his German-language memoirs, Erlebte Menschlichkeit (Experienced Humanity), Kueng wrote that a sudden death would suit him, since he would not have to decide to take his life.

But if he does have to decide, he said, he does not want to go to a “sad and bleak” assisted suicide center but rather be surrounded by his closest colleagues at his house in Tuebingen or in his Swiss home town of Sursee.

“No person is obligated to suffer the unbearable as something sent from God,” he wrote. “People can decide this for themselves and no priest, doctor or judge can stop them.”

Such a freely chosen death is not a murder, he argued, but a “surrendering of life” or a “return of life to the hands of the Creator.”

Kueng, who writes openly about his Parkinson’s and other medical problems in old age, said this death was compatible with his Christian faith because he believed it led to the eternal life promised by Jesus.

He cited the late Pope John Paul’s public struggle with Parkinson’s and the silent suffering of boxer Muhammed Ali, also afflicted with the disease, as models he did not want to follow.

“How much longer will my life be liveable in dignity?” asked Kueng, who said he still swims daily but is losing his eyesight and his ability to write his books by hand as usual. “A scholar who can no longer read and write – what’s next?”

Kueng, who repeatedly criticized the now retired Pope Benedict during his papacy, described Pope Francis as “a ray of hope”. He disclosed that the new pontiff had sent him a hand-written note thanking him for books that Kueng sent to Francis after his election in March.

It seems highly unlikely the new pope will include support for assisted suicide among possible Church reforms he was discussing with eight cardinals in Rome on Wednesday.

Speaking in Sardinia in late September, Francis denounced a “throwaway culture” that committed “hidden euthanasia” by neglecting and sidelining old people instead of caring for them.

A spokesman for Rottenburg-Stuttgart diocese, where Tuebingen is located, said Kueng’s views on assisted suicide were not Catholic teaching. “Mr Kueng speaks for himself, not for the Church,” Uwe Renz told Stuttgart radio SWR.

Complete Article HERE!

The Life Matters Media Connection — Managing Our Mortality

A new posting for my Managing Our Mortality column on the

Life Matters Media website is now available.

 

Life Matters

 

To find my latest column titled — Is Death The Enemy? look HERE!

Here’s what The Managing Our Mortality column is all about:

We are notorious for ignoring and denying death; we keep death out of sight and out of mind, postponing any serious considerations until death comes knocking at our door. This inevitably leaves us unprepared and frightened as we face our own mortality. We seldom get around to asking ourselves; “Will my death be good? Will it be wise? Will it matter?”

Death is not only a universal fact of life, part of the round of nature; but it’s also a necessary part of what it means to be human. Everything that we value about life and living—its novelties, challenges, opportunities for development—would be impossible without death as the defining boundary of our lives. So planning for the inevitable, especially when death is not imminent, is important work for us all.

Deaths With Dignity

Rear Adm. Chester Nimitz Jr. and Joan Nimitz planned their suicides with military precision.

By Lewis M. Cohen

NimitzLast month, following a decade of bitter political combat, Vermont Gov. Peter Shumlin signed the Patient Choice and Control at End of Life Act. Passage of the bill was a bittersweet triumph for the governor, who had made it part of his election platform and then encountered fierce opposition from a coalition of leaders from the Roman Catholic hierarchy and from representatives from the disability community and socially conservative organizations that also dispute the legitimacy of same-sex marriage, abortion, and contraception. Vermont is now the fourth state to make it legal for a physician to prescribe lethal medication to a terminally ill, mentally competent patient who wants to end his life and to offer immunity from criminal prosecution to doctors, family members, and friends who wish to participate. Vermont has also become the first state from New England to officially accept this treatment option, which has been available in Oregon, Washington, and Montana. The new law is an important step forward for the death with dignity movement.

When I mention this movement, people often look mystified. Explaining that it is the same phenomenon as “aid in dying” merely results in additional perplexity. It’s only when I say, “physician-assisted suicide” that the coin drops and they recall Jack Kevorkian—the original Dr. Death—or perhaps Derek Humphry, author of Final Exit and founder of the Hemlock Society. At this point in the conversation, many enthusiastically identify themselves as staunch advocates while others just as vociferously announce they are fervent opponents. And then there are the few individuals who suddenly break eye contact and start inching away. The latter are a reminder this is not only an extremely private and sensitive subject but that the act of hastening death is a cardinal sin if you’re Catholic and a potent taboo regardless of one’s religious affiliation or lack thereof.

What almost all of these people have in common is a lack of facts or experience upon which to base their opinions. Whether they love or hate the idea of physician-assisted suicide or are simply creeped out, it is unlikely that they have encountered anyone or even heard a narrative of someone who has resorted to using it as an option at the end of life; they are similarly unfamiliar with doctors or loved ones who have helped a patient to die. Because physician-assisted suicide has been illegal, complex, and intensely private, the stories have remained in the shadows. Even when they are recounted, the subject of suicide is so morbidly powerful that most people psychologically protect themselves by promptly forgetting the narrative or quickly switching the mental channel.OLYMPUS DIGITAL CAMERA

Last year, during the time of the Massachusetts Death with Dignity ballot initiative, I learned about Rear Adm. Chester W. Nimitz Jr. and his wife, Joan, from a brief article written by their daughter Betsy Nimitz Van Dorn that appeared in the Cape Cod Times. The couple died on Jan. 2, 2002, and after a fleeting spate of publicity, the story disappeared from public attention. I was able to speak with Van Dorn for a more intimate perspective of her parents and their decision.
Joan Nimitz was born in England, trained as a dentist, and came to America for specialty training in orthodontia. Like many women of her generation, after meeting and falling in love with her future husband, she had little opportunity to practice her profession and instead devoted herself to raising their three daughters and furthering her husband’s career.

As a Navy wife, she led a peripatetic existence, moving the family every year to a new base in a strange city often located in a foreign country. She oversaw her children’s upbringing single-handedly during the extended periods in which her husband was at sea. By age 89, Nimitz suffered severe osteoporosis, bone fractures, and the constant pain of peripheral neuropathy. Although she and her husband loved golf, this pursuit was no longer possible, and because she was becoming blind with macular degeneration, she was unable to indulge her passion for reading.

Chester Nimitz Jr., at age 86, was a bonafide military hero and the son of the legendary World War II Pacific fleet admiral—Chester Nimitz Sr.—who was responsible for defeating the Japanese navy in the Battle of the Coral Sea, the critical Battle of Midway, and in the Solomon Islands campaign. Chester Nimitz Jr. graduated from the Naval Academy and served on a submarine, the USS Sturgeon, during World War II. He was awarded the Silver Star, which was presented by his father at Pearl Harbor. Nimitz was transferred to command of another submarine, the USS Haddo, and was awarded the Navy Cross and a Letter of Commendation with Ribbon. The Navy Cross citation reads in part, “For outstanding heroism in action during her Seventh War Patrol in restricted enemy waters off the West Coast of Luzon and Mindoro in the Philippines from 8 August to 3 October 1944.” The citation goes on to say, “Valiantly defiant of the enemy’s over powering strength during this period just prior to our invasion of the Philippines, the USS Haddo skillfully pierced the strongest hostile escort screens and launched her devastating attacks to send two valuable freighters and a transport to the bottom. … The Haddo out-maneuvered and out-fought the enemy at every turn launching her torpedoes with deadly accuracy despite the fury of battle and sending to the bottom two destroyers and a patrol vessel with another destroyer lying crippled in the water.”

An interview recorded two months before his death was conducted at the Naval War College, and it reveals a man with no interest whatsoever in rehashing any brave exploits that took place in the war. When asked about his awards, he simply replied, “Yes, the patrols were all deemed successful. We got a combat star. In other words, we sank something all the time.”

Of greater concern to him in the interview was conveying his indignation over the penurious salary that he received during his time in the military that would not properly cover family expenses. After completing service in the Korean War and against Chester Nimitz Sr.’s express wishes, he left the Navy. He was recruited by Texas Instruments and later became the president of the Perkin-Elmer Corporation. According to his daughter, the first year he worked at Texas Instruments in Dallas he paid more in income taxes than he had cumulatively earned during 23 years in the Navy. Her parents did not lead especially lavish or self-indulgent lives but were extraordinarily generous to all of their progeny. Their mantra, Van Dorn says, was:

Chester Nimitz“We are not the kind of people that would ever want to leave any of our children a trust fund. We have given you decent educations, and you are fine on your own. We want the pleasure of watching our grandchildren go to great schools and summer camps and take trips and have adventures. That is the pleasure money can bring—not stockpiling it so some spoiled offspring can have it when he or she turns 21.”

Chester and Joan Nimitz were longtime members of the Hemlock Society, a national right-to-die organization that was organized in 1980. Hemlock’s philosophy—that people should be in charge of their deaths as well as their lives—appealed to them as meticulous managers. The Nimitzes freely discussed these beliefs with their children, and Van Dorn explained, “They always proclaimed that when they got sick and tired of feeling sick and tired, that they would do themselves in.”

This did not mean they wouldn’t take advantage of medical advances, and when the admiral developed coronary artery disease, he promptly underwent quadruple cardiac bypass surgery. However, after several years, his health began to noticeably deteriorate; he had frequent bouts of congestive heart failure, suffered gastrointestinal problems, lost 30 pounds, became incontinent, experienced chronic back pain, and began to fall at home. Like his wife, his vision became impaired, and he could no longer safely drive. Extensive evaluations and treatment at the best Boston teaching hospitals proved ineffective for this proud warrior.

Nurses were employed at their home to attend to Joan Nimitz’s worsening health problems, but the couple did not want to squander all of their money on such care. They were both appalled at the vast sums spent at the end of life to sustain people who were frail and sick and not likely to get better. They could clearly envision—and they rejected—the idea of spending their remaining years in a nursing facility.

The admiral particularly worried his heart condition might suddenly worsen and his wife would be unable to commit suicide by herself. Joan Nimitz confided to the children that she, too, feared that without her husband’s help, she would not be in a position to ingest the barbiturate pills they had been stockpiling.

The admiral told his daughter, “That’s the one last thing I have to do for your mother.”

According to Van Dorn, her father had a large file box labeled with a 3-by-5 note card upon which he had written with a magic marker, “When C.W.N. [Chester Williams Nimitz] Dies.” In it were his insurance policies, documents concerning his Navy pension, and so forth. This was intended to save the family from the frustrating task of scrambling around in search of these papers. He was a commander, and he wanted his death and its aftermath to be conducted with the precision of a military operation.

Throughout the fall and winter, the Nimitz couple explicitly discussed with the children their plan. It followed the suggestions in the book Final Exit. When ready, they would begin with an anti-nausea suppository, followed by the sleeping pills, chased with a little of their beloved Mount Gay Rum with a squeeze of lime and soda, and maybe a little peanut butter to settle their stomachs. The last step involved securing a plastic bag over their heads as a precaution in case the medication was not sufficiently lethal. The admiral was going to let his wife take the pills first and make sure she was dead before he followed her example. Van Dorn concluded, “None of it was particularly pretty. But they were just so determined and upbeat about all of it.”

On New Year’s Day in 2002, the Nimitz clan, including some grandchildren, assembled for lunch. They discussed the football games, embraced, and quietly praised the patriarch and matriarch. Everyone was relatively subdued; the admiral and his wife were emotionally reserved individuals. The family members did not try to persuade them to change their minds, because they knew that this would be fruitless. They were confident that neither parent was depressed and their decision was entirely consistent with long-held beliefs.

The admiral had wanted one more chance to write tax-deductible checks for his children, their husbands, and grandchildren, and these were dated Jan. 2, 2002, and left in the apartment. He had seen a lot of deaths in World War II. Joan Nimitz had experienced the deaths of siblings, including one of her brothers, a British Royal Air Force pilot shot down in combat. Death was no stranger to this devoted couple and held no fear. After their family went home, Chester and Joan Nimitz wrote a suicide note that read in part, “Our decision was made over a considerable period of time and was not carried out in acute desperation. Nor is it the expression of a mental illness. We have consciously, rationally, deliberately, and of our own free will taken measures to end our lives today because of the physical limitations on our quality of life.”

After the police officially notified Van Dorn of the deaths, she brought out her father’s comprehensive list of people and telephone numbers. She divvied up the list with one of her sisters, and they called all of her parents’ closest friends to tell them what had happened before any word got into the newspapers. Almost universally the response was, “Yup, that’s your parents!”

In the spring when the ground thawed, the family convened in Cape Cod, Mass. It was a place filled with memories of summer barbecues and sailing expeditions. The ashes of the couple were interred; the younger children placed small keepsakes into the grave, such as a particular piece of Lego that reminded them of their grandparents; and family members spoke lovingly and respectfully of their progenitors.

In the ensuing years, Van Dorn has supported a number of nonprofit organizations, including Compassion & Choices, which along with the Death with Dignity National Center evolved from the original Hemlock Society. The efforts of these groups led to passage of the Vermont bill. Van Dorn appreciates that the law would not have directly helped her parents, as neither had a “terminal” disease. She understands that a civil rights movement, such as death with dignity, takes politically expedient and incremental steps. She anticipates that in the future the infirmities and suffering of advanced age may also qualify people to request this option (as is presently true in Belgium, Switzerland, and the Netherlands). Meanwhile, one more American state will allow its citizens further control at the end of life. And Van Dorn is looking forward to the day “when kids and their parents will regularly sit around the dining room table and talk about end-of-life issues the way you talk about college planning. Because, after all it is just another kind of planning.”

Complete Article HERE!

I Am Breathing: film follows dying father’s last months

The film I Am Breathing documents the last year of a young architect’s life as he succumbs to motor neurone disease. His wife tells Sarfraz Manzoor why he chose to leave this moving legacy

By Sarfraz Manzoor
One evening in late October 2007 Neil Platt returned home after a busy day at work. Platt, 33, an architect, walked through the door of his London house and immediately sat down.

Neil with OscarWithout taking off his coat, he removed his shoes and socks to inspect his toes. There was something not quite right with his right foot. Neil told his wife, Louise, that he had been limping during the day but that, oddly, he was not in pain. The foot seemed to be ‘slapping itself’ on to the ground. Louise reassured him that it was probably nothing, suggesting he might just need new shoes.

But there was something else. Neil now noticed that he could not the lift the toes on his right foot as high as he could those on his left. He made an appointment to see his doctor. Louise was not unduly worried until Neil returned from the appointment: the doctor had given Neil his personal mobile number, insisted he undergo several tests and, because of Neil’s family history, referred him to a neurologist.

Neil had his suspicions about what was wrong; Louise was less convinced. But when Neil’s mother came to visit a few weeks later and saw her son limping towards her at King’s Cross station, she knew immediately what the matter was. The last time she had seen that limp was on her late husband.

Neil’s father, David, had died at the age of 50 from motor neurone disease (MND), which had also killed Neil’s grandfather at 62. His father’s death had made Neil acutely alert to the first symptoms of the disease. When he was 22 he had been to see a genetics specialist in an attempt to assess his chances of developing it. After six months of research the specialist came up blank.

He could only say there was a 50-50 chance that Neil was a carrier of the same defective gene as his father and grandfather, and even that was a guess. But on February 7 2008, after doctors had eliminated every other option (there is no specific test for MND), Neil was diagnosed with the disease.

MND is a brutal, merciless disease that rapidly causes physical deterioration, leaving sufferers unable to walk, swallow and eventually even breathe on their own. Someone with MND can typically expect to live about two years from diagnosis. It affects 5,000 people in the UK, with about 1,000 people diagnosed each year. More men than women are sufferers, and it is predominantly a disease of middle and later years (Neil was at the younger end of the spectrum). Although there is a genetic factor for some of those affected, the science is unclear on the causes. But while more than £300 million is spent annually on cancer research in the UK, the average annual spending on MND research is £2 million.

There is no treatment for MND, just management. So far only one drug, riluzole, has been developed for people with the disease. Riluzole can slow the rate of deterioration and extend life by, at best, about six months. One often hears stories of people battling and beating cancer, but no one beats motor neurone disease; once Neil was diagnosed, everyone knew how the story would play out.

For Neil and Louise the diagnosis seemed particularly cruel because they had recently become parents. The couple had met in 1994 as students at Edinburgh’s College of Art, but they had only begun a relationship a decade later when they ran into each other at a mutual friend’s party in London. They had been dating for a few months when Neil surprised Louise on holiday in Portugal by asking her to marry him. ‘We hadn’t been together for very long, but that was Neil – cheeky and confident,’ Louise said as we sat together in a cafe in Edinburgh. ‘The barman looked relieved when we got back to the hotel and Neil gave him a thumbs-up.’

They married in November 2004 in a Scottish stately home. In the wedding video Neil can be seen, in a bow tie, kilt and sideburns, dancing with Louise in the evening ceilidh. They moved to south London, and Louise became pregnant. Their son, Oscar, was born in August 2007. By the time of Oscar’s first Christmas, Neil and his doctors were fairly sure that he had MND.

‘My most vivid memory of that time is of when we went to my parents’ in Edinburgh,’ Louise told me. ‘I went for a walk at the beach with my mum and Oscar, and it was the first time I talked to Mum about there being a real possibility that Neil could die. I remember holding in the tears until I said, “How am I going to tell Oscar?”’

As the disease took hold, Louise found herself having to look after two dependent males. By Christmas 2007 Neil was supporting himself with a stick; by the next April he was in a wheelchair. There were times when the disease progressed with alarming speed.

‘There was a big jump in 2008, between Neil’s birthday in July and Oscar’s birthday in August,’ Louise said. ‘On Neil’s birthday I have photos of him wearing fingerless gloves, meaning he could push his own wheelchair, and by Oscar’s birthday he couldn’t lift his arms, needed a head rest and had lost a lot of weight. He was gulping like a fish.’
By September 2008 Neil could no longer use his arms at all, and Louise had to feed him. ‘The physical parallels [between Oscar and Neil] were unbelievable,’ Louise recalled. ‘I started having to spoon-feed Neil just as the spoon was being grabbed off me by Oscar. Oscar was pulling himself up just as Neil had to start using a hoist to pull himself up. And when the wheelchair arrived, so did the baby walker.’

It must have been hard to reconcile yourself to this turn of events, I suggested.

‘The fact I had a baby did me a huge favour,’ Louise, who had worked in film and television costuming before having Oscar, said, ‘because you go from being someone who is selfish in life to being a mother, to being a carer, and I was just doing all of that at the same time.’

But did you ever give in to self-pity or envy at those not in your position, I wondered.

Louise replied by telling me a story. The family had gone on holiday to Menorca with some of Neil’s relations. Oscar was ill with a tummy bug. One morning he woke early and Louise pulled him into bed, whereupon he had diarrhoea. ‘I remember putting Oscar into the bath to wash him,’ she recalled, ‘and I turned and Neil was standing in the doorway on crutches. Then suddenly he crumpled and was on the floor.’ That low point prompted Louise to change her outlook. ‘I switched my thinking from self-pity to thinking how privileged I was to be going through this so closely with Neil as he went on this part of his journey through life,’ she said.

Neil’s condition meant that Louise needed at least two other adults in the house at all times, three if possible. ‘I had to fill the calendar with whoever I could get – friends, family, they all worked as a tag team and gave up their time,’ Louise said. ‘We also had two palliative-care team members every week morning who came to wash and dress him.’ And then there were the other specialists who were in and out of the house: the GP, district nurse, palliative consultant, social worker, occupational therapist, speech therapist, dietitian, physiotherapist, MND nurse specialist, respiratory specialist, bloods nurse and night sitters.

The family moved to Harrogate so they could be close to Neil’s family, and Neil transferred to the Leeds branch of his architecture firm. To get to the office he would take a taxi to the station and then use a walking frame, but once he began to lose mobility in his hands, seven months after his diagnosis, he had to give up work. His brother Matthew, who is younger by five years and works for the police, took six months off to help. ‘I did all the shaving,’ Matthew said, ‘and breakfast was my job – as was the whole toilet thing. Neil was able to have a good existence because he had an army of friends to help out.’

‘Considering what we were going through, we had an amazing amount of good times,’ Louise said. ‘We saw our friends and family much more than we would normally have done, and Oscar was always surrounded by people.’

There were so many people who wanted regular updates about his condition that in July 2008 Neil alighted on the idea of starting a blog – he called it Plattitude – on which he could share his daily news. It would be, he wrote in his introduction, ‘a tale of fun and laughs with a smattering of upset and devastation’.

At the beginning the blog was Neil’s way of keeping in touch with those close to him, but as word spread and strangers began to read it, Neil realised that he could raise the profile of a misunderstood disease. The posts became much more frequent: from the end of December 2008, for the next two months, he posted almost every day, however much physical discomfort he was in and whatever his mood. If he couldn’t manage a post, he would ask Louise to write one for him.

At first Neil typed the blogs himself. When that became impossible, he would ask whoever was in the house to help him, and also began using voice-recognition software. In one entry he described his changing reaction to his condition. ‘Stage one was disbelief tinted with dread as I was given the diagnosis,’ he wrote. ‘Having been here before with Dad, it was never going to be pleasant. Stage two was to ignore it for as long as possible in order to enjoy every possible second with my beautiful wife and newborn son in our newly bought family home. Stage three arrived when it was no longer possible or realistic to ignore the symptoms.’

In summer 2008 Morag McKinnon, a drama director who had made a number of short films and who had known Neil and Louise since they were all students in Edinburgh, came across the blog. McKinnon contacted Emma Davie, a documentary-maker friend, suggesting they make a film about Neil. Neil immediately agreed to let the documentary makers spend several months filming him.

‘For me the film was so ethically complex that at first I didn’t want to make it,’ Davie said. ‘But when I met Neil the force of his desire to communicate demanded that we just get on with the job.’ The project crystallised when Davie and McKinnon decided to use words from Neil’s blog to narrate the film. ‘This empowered us,’ Davie said, ‘because it stopped the film from concentrating on his physical body and reminded us of the power of his mind.’

The resulting film, I Am Breathing, has already been screened in 14 countries, with many more international screenings to come on June 21 – MND Global Awareness Day. Fifty per cent of the profits will be donated to the MND Association, the other half invested in outreach work. The film is bleak, unflinching and moving, yet morbidly funny. In one scene Neil describes trying to arrange for his phone to be disconnected.

‘They want to know why I want to end my contract,’ he tells the camera. ‘They say, “We have some great deals,” and I say, “But I am dying, so I don’t need to use the phone,” and they say, “Would it make a difference if we threw in three months extra?” I told them, “If you can do that, you’re better than all my doctors put together.”’

‘They filmed everything they could,’ Louise said. ‘They interviewed Neil, they interviewed me and they made sure they got the general drudgery of running the house.’ We see Neil in his wheelchair, a ventilator tube obscuring his face while his son plays on the floor around him. We see him worrying about what questions Oscar will ask about his father in 10 and 20 years’ time, and we also see Neil constructing a memory box filled with objects to remind Oscar of his father as he grows up: a wallet, a leather jacket, a hat, a watch. It is clear that Oscar provides Neil with the strength to face the disease and keep going.

‘Neil lived with the disease because of Oscar,’ Matthew said. ‘He wanted to see his son become a little person. Me? I wouldn’t want to hang around. I could not watch my arms and foot stop working, I couldn’t put my mum and partner through it.’

As he deteriorated, Neil wished he could do more for his son and Louise. ‘I miss the ability to give (and receive to a certain extent) a hug,’ he wrote on his blog. ‘I think I used to be good at it too. All I can do now is raise my eyebrow or give a reassuring wink. Believe me that this does not have the same effect.’

Neil and Louise began to have conversations about the end and about life for Louise and Oscar without him. ‘Towards the end he sent me to Scotland, where my family are, to buy a house,’ Louise said. ‘He needed to know that I would have my own place. He was a father and he wanted the best for his child. He couldn’t say to me, “I want you to find someone else,” but he did say, “I know you will find someone else.” That was the only way he could do it.’

Time, they both knew, was running out. Louise had bought a clock that projected the time on to Neil’s bedroom ceiling; ‘I imagine it is my own personal countdown,’ Neil wrote. His line in the sand was speech: if he was no longer able to communicate, life would not be worth living. ‘As soon as my speech becomes unintelligible,’ he wrote in one blog post, ‘I will accept the offer of the hospice. This visit will be for the purposes of switching off the ventilator.’

On February 24 2009 Neil dictated his final blog post to Louise, a scene that is shown in I Am Breathing. In a dimly lit room Louise listens as Neil, his voice muffled, whispers, ‘The reason I have chosen to go to the hospice tomorrow is to draw the curtains over what has been a devastating, degrading year and a half.’ Quietly sobbing, she notes his words with one hand while tenderly stroking his hair with the other.

Christmas Day 2008
Neil Platt died the following day. He was cremated wearing a T-shirt emblazoned with the face of the action star Chuck Norris. The song he had requested to be played during the cremation was Bon Jovi’s Wanted Dead or Alive.

‘The most disappointing thing was that I had really hoped he would get to the point where he wanted to go – but he never got there,’ Louise told me. ‘He never wanted to die. He went kicking and screaming.’

Four years on from his death Louise has moved to Scotland. Oscar is now five, and while he does not remember Neil, he knows all about him. ‘He still gets a kiss from Daddy every night,’ Louise said. She is remarried, to Robin, a doctor. ‘The word “Daddy” is reserved for Neil, but Oscar calls Robin “Dad”,’ she said. ‘I could not deny him being able to call someone dad at that young age.’

Life, of course, goes on, and it’s clear that however unimaginably difficult things have been, Louise has not been broken. ‘I was determined not to be destroyed by this,’ she said. ‘And I learnt that from Neil.’

Oscar is too young to see the documentary about his father, but Louise hopes that many others will watch it – and that it inspires essential research into MND. ‘I am absolutely convinced that my remaining anger and disappointment will never dissipate,’ Neil wrote towards the end. ‘Nor would I want it to. Because the remaining jealousy and anger are now providing the fuel for the fire as we fight to find a cure for this bastard of a disease.’

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Threshold Choir

Threshold Choir
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a cappella choirs of
primarily women’s voices:

a community
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to sing for and with
those at the thresholds of life.