by Godfrey Mutiso Gorry
By Lewis M. Cohen
Last 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.
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:
“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.”
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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.
Without 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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