“One year after the loss, the risk was almost the same as in the non-bereaved population.”
Much research has focused on explaining the observed phenomenon of people dying soon after their life partner.
Several studies have shown that grieving spouses have a higher risk of dying, particularly of heart disease and stroke, but the mechanism is unclear.
The latest study asked specifically whether bereaved partners were more likely than others to develop atrial fibrillation, the most common type of irregular heartbeat and a risk factor for stroke and heart failure.
Researchers in Denmark used population data collected between 1995 and 2014 to search for a pattern.
Of the group, 88,612 people had been newly diagnosed with atrial fibrillation (AF) and 886,120 were healthy.
“(T)he risk of developing an irregular heartbeat for the first time was 41% higher among those who had been bereaved than it was among those who had not experienced such a loss,” said the study led by Simon Graff of Aarhus University.
Younger people, those under 60, were more than twice as likely to develop problems, and those whose partners were relatively healthy in the month before death, thus not expected to die, were 57% more at risk.
The team cautioned that no conclusions can be drawn about cause and effect, as the study was merely an observational one, looking at correlations in data.
Several factors that could throw the findings out of whack, such as the bereaved group’s diet, exercise regime, or predisposal to AF, were not known.
The loss of a partner is considered one of the most stressful life events.
It can lead to mental illness symptoms such as depression, and can cause people to lose sleep and appetite, drink too much and stop exercising – all known health risks.
Rare insight into attitudes to death among the very old
UNIVERSITY OF CAMBRIDGE
Death is a part of life for people over 95 years old, who mainly live day-to-day, concludes a rare study of attitudes to death and dying amongst the very old. The research, from the University of Cambridge and published today in the journal PLOS ONE, finds that this group is willing to discuss dying and their end-of-life care, but is seldom asked.
Improvements in our environment and lifestyles, as well as significant medical and healthcare advances, mean that more and more people are living to a very old age. According to a report published last year by the Office of National Statistics, the number of people aged 90 or more at the time of their death has tripled in the past three decades in the UK.
“Despite the dramatic rise in the number of people living into very old age, there is far too little discussion about what the ‘oldest old’ feel about the end of their lives,” says Dr Jane Fleming from the Department of Public Health and Primary Care at the University of Cambridge, who led the study. “We know very little, too, about the difficult decisions concerning their end of life care.”
In a study part-funded by the National Institute for Health Research, researchers interviewed 33 people over 95 years old from the Cambridge City over-75s Cohort and for 30 of these and for 9 people too frail to be interviewed in person, a ‘proxy’ – a relative or member of care-home staff, for example – about attitudes towards death, dying and end-of-life care. The responses are at times poignant and occasionally humorous, but provide a fascinating perspective on the views of an often overlooked minority.
The age of the older people was so great that most of their contemporaries had died, so death was a regular feature of life and many spoke of living on borrowed time. “As people get older, as their friends die, there’s an element of ticking them off,” said one proxy.
Many of the older people referred to “taking each day as it comes”, expressing thankfulness for where they were in life and content, at this stage, to take life one day at a time, not worrying too much about tomorrow. There was a sense of life ticking along until something drastic happened. “It is only day-from-day when you get to ninety-seven,” said one.
Although one interviewee described only being “three-quarters of the way” through their life, others knew and accepted that they were going to die soon. One son-in-law describes his elderly mother-in-law giving a long-life light bulb to her granddaughter, saying: “Something for you, it’s not worth me having”. Most of the interviewees felt ready to die. “I’m ready to go,” said one woman. “I just say I’m the lady-in-waiting, waiting to go.” Some felt they were a nuisance to others, while others were more desperate in their desire to reach the end, suggesting they had simply lived too long. “Please don’t let me live ’til I’m a hundred,” one woman said to her proxy.
Several proxies discussed conversations that they had had about euthanasia. A son described a vivid memory of accompanying his mother to visit one of her friends who had dementia: “She said ‘Gordon, if I ever get like that, for goodness sake put a…’, it was her words, not mine, ‘put a pillow over my head, will you?'”
Most were not afraid of dying, either reporting that it did not worry them or their proxies saying they had not expressed any worries or fears about it. For some this absence of fear was rooted in positive experiences of others’ dying: One interviewee said of her parents: “They were alive, then they were dead, but it all went off as usual. Nothing really dramatic or anything. Why should it be any different for me?”
Proxies reported that death was rarely talked about: “That generation, they didn’t actually discuss death much, I don’t think,” said one. A few, however, talked openly about death and the future – one proxy described a conversation: “She said, ‘I should think I’ll snuff it soon, don’t you?’ I said, ‘I don’t know, you tell me’ and she just laughs. I mean, she… You can laugh with her about it, you know.”
Discussion of funeral preferences was more common than talking about death, although the extent of discussions varied. Some had made their preferences clear and had made plans themselves and paid for their funerals in advance. Others noted the difficulties of discussing funerals – one proxy described a conversation with her mother: “I said, ‘Do you think you would want to be buried or cremated?’ And she said, ‘Well, cremated, I think.’ I find it very difficult talking to her. I don’t feel that I can. You see, I say to my children ‘Oh, that’s a nice song on the radio. Oh, perhaps I’ll have that at my funeral’. And you couldn’t to my mum.”
The manner of death was of more concern than its imminence. Although some said they had not really thought about dying, many explicitly expressed the wish to die peacefully, pain free and preferably while asleep – to “just slip away quietly.”
“I’d be quite happy if I went suddenly like that,” said one interviewee, snapping their fingers.
When asked whether, if they had a life-threatening illness, they would want to receive treatment that would save their life or prefer treatment that would just make them comfortable, few people chose life-saving treatment. “Make me comfortable” was a far more typical response and proxy informants tended to echo the older people’s dominant preference for comfort rather than life-saving treatment.
Few people wanted to be admitted to hospital in the event of such an illness, though rarely gave reasons. One care home manager explained about her resident: “If she went to [hospital] quite poorly, I think she would be full of anxiety and I think it would exacerbate any illness she had. I think she would find it alarming actually.”
Family members were often aware of preferences. One niece said of her aunt: “She’s dead against going. She doesn’t like hospitals. She doesn’t want to go.” Her aunt, she said just wanted to go to bed and go to sleep without going into hospital – “I think that’s her ideal, just dying in her own home.”
A handful of interviewees viewed well-intended medical interventions as prolonging life unnecessarily, an issue usually, but not exclusively, raised by proxy informants. One 98-year-old couldn’t “see any point in keeping people alive”. One proxy described being annoyed when the doctor gave her relative a pneumonia injection: “She had no quality of life… was ready to go … [but] there was no consultation with us at all about it.”
“Death is clearly a part of life for people who have lived to such an old age,” says Dr Fleming, “so the older people we interviewed were usually willing to discuss dying, a topic often avoided.” However, most had only had discussions regarding end-of-life preferences with health care professionals, rarely with family members. Nonetheless proxies tended to feel they knew their relative’s preferences, though the study found in a couple of instances relatives’ guesses were wrong. A care home manager commented that it was not necessarily with older people themselves that professionals broached the topic: “Historically what happens in hospitals is they tend to… if it’s not asked beforehand they go straight to the relatives. They won’t broach it with the individual, which is actually […] against the Data Protection Act, and it’s nobody else’s business. But it is how the culture of hospitals works unfortunately.”
However, the same care home manager pointed to the practical difficulties of having conversations about end-of-life care preferences: “I’ve not had long discussions, because of [her] hearing problem. It’s very difficult to write them down on paper. And she’s got to shout the answer back at you and you’ve got to re-clarify it.”
“In our previous research we found the majority of people who die in their 90s or 100s are dependent on others because of very high levels of disability and cognitive impairment by the last year of life,” explains Dr Fleming. “Over recent decades most people dying in very old age have moved into care in their final year or died in hospital. To plan services to best support rising numbers of people dying at increasingly older ages we need to understand their priorities as they near the end of life.”
“Now so many more people have reached a great age before they die, it’s important we know about their views and their concerns, particularly in relation to end-of-life care,” says Dr Morag Farquhar, the study’s other lead author. “These are difficult conversations to have and no one wants to have to face their own death or that of a loved one. But having these conversations before it is too late can help ensure that an individual’s wishes, rather than going unspoken, can be heard.”
I was connected to her in a very personal way. When we were preteens, my best friend (also my cousin), and I used to sit in front of the TV in our sponge curlers and Lanz nightgowns, fantasizing about what it would be like to be Patty, always getting into trouble (but having fun) in high school. We loved, too, Cathy, her identical perfectly behaved but boring cousin from Scotland (with that adorable accent). I was always Cathy.
This is what high school would be like, falling in love with our French teachers, switching places to fool teachers, Cathy getting a flu shot when they thought she was Patty. And that flip haircut! Kind of like us.
Then came the drugs and divorces, and bipolar disorder, and no more sweet Patty Lane. The fairy tale ended. For a long time, her life was in decline. Just like a lot of us.
Something broke inside when I heard of her death. I’ve had friends die — one, at 37 — but it’s getting closer and closer.
You know somewhere, in the back of your head, that you will die someday. I, more than most, was exposed to it early, diagnosed twice with cancer.
I suppose it’s all coming home to me because my husband is facing surgery. Yes, it’s minor. But it suddenly got him talking about wills and annuities and trusts and who to call (we’ve always kept our finances separate but he’s afraid he’s going to die and wants to make sure my son and I are taken care of). I guess be grateful for small things!
And then I realized, he’s going to die. Maybe not before me, but he will. We just celebrated our 22nd anniversary (actually been together 33 years and I want credit for it all!), and we’ve had our problems through the years. But I suddenly realized I loved him. What will life be like without him? We’ve been together more than half my lifetime. I don’t know what I will do if he is no longer there.
OK, so I’ll get the TV back (no more Bill O’Reilly) and I won’t have to pick up his ski coat off the floor, where he throws it when he comes home. And I won’t have to listen to any more diatribes about how Bernie Sanders will drive us to taxation hell.
You know this day will eventually come. But it just all seems so soon now.
Research has shown that 52 percent of Americans over 65 will not have enough money to maintain their style of living when they retire — because we haven’t wanted to think about dying. We haven’t made plans, so afraid of our impending mortality. Didn’t we all think we’d live forever? We were the Baby Boomers, after all!
As I said, I had an early preview so maybe it’s easier for me. But I still see my husband as the tall, skinny tennis star walking off the court with his trophy (and if I’m honest, me, too, in my short shorts and halter top).
He’s still athletic but his hernia has turned him into an old man overnight. Because of the pain, he’s had a hard time walking (and forget about getting in and out of the car!). It hasn’t stopped him from working at the two dental clinics he helps out at in New York, or even from using the elliptical and stationary bike at home.
But he still walks very, very slowly and it’s like getting a taste of the future.
Hopefully, the surgery will reverse that. But there’s no getting around it. We’re getting old.
I’m hoping next week he’ll be back to complaining that the paper towels are running out and returning to his endless “Camp Larry” Sundays, where he exercises for four hours at a stretch.
But I’m starting to think it’s the beginning of the end. Or maybe, it’s just the end of the beginning.
After a Canadian drugmaker doubled the price for the most commonly prescribed aid-in-dying drug, Washington Death-with-Dignity advocates created a cheaper new medication to help terminally ill patients who choose to end their lives under the law.
By JoNel Aleccia
Washington state Death with Dignity advocates have found a way to thwart a drug company that abruptly doubled the price — to more than $3,000 — of the lethal medication some terminally ill patients use to end their lives.
They’ve come up with a new mix of medications that induces death for about $500, said Dr. Robert Wood, a longtime University of Washington HIV/AIDS researcher who now volunteers with End of Life Washington, an advocacy group.
“We thought we should concoct an alternative that would work as well,” Wood said. “It does work as well.”
Now doctors in Oregon have adopted the drug mix, too, as a way to ensure that cost doesn’t prevent terminally ill patients from making the choice they want under the state’s right-to-die law. And in California, where a similar law takes effect later this year, officials are considering it as well.
“We’ve always had the belief that no matter who you are, whether you’re rich or poor, you should have access to a lethal dose of medicine that does what you want: to end your life in a peaceful and dignified manner,” said George Eighmey, president of the board of the Death with Dignity National Center, based in Portland.
The issue arose last year, when Valeant Pharmaceuticals International of Quebec acquired the rights to Seconal, the trade name of secobarbital sodium, the most commonly prescribed drug for aid-in-dying patients. The firm quickly doubled the cost, from $1,500 to more than $3,000 — and up to $5,000. That’s on top of previous retail price increases for the nearly 90-year-old sedative that once sold for $150 for a lethal 10-gram dose.
The impact on patients considering using the drugs was immediate, said Beth Glennon, a client-support coordinator for End of Life Washington.
“People were horrified. They were daunted. They thought it was criminal,” she said. “The cost increase has been significant for some people. Some are on a very fixed income.”
Some patients were worried about burdening their families with the extra expense of the medication, she said.
Health insurance often doesn’t pay for aid-in-dying drugs and they are not covered under Medicare. In Washington, the drugs aren’t covered under the state Medicaid plan or by several Catholic health systems that prohibit doctor-aided death based on religious objections.
So Wood and other doctors in the state decided to seek an alternative to the high-priced drug sold by Valeant, which is among firms under fire by Congress for hiking prices on desperately needed drugs.
They turned to a compounding pharmacist, who doesn’t have access to the exact ingredients included in secobarbital. The result was a less-expensive mix of three medications: phenobarbital, chloral hydrate and morphine sulfate, all in powdered form to be mixed with water, alcohol, applesauce or juice.
Alternative’s side effects
Last year, 55 of the 155 Death with Dignity patients seen at End of Life Washington chose the cheaper dose, Wood said. They opted for it even though the new medication tastes worse, burns the mouth and may take longer to work than Seconal.
“Roughly a third decided they’d try the untried and more burning method,” Wood said.
The other lethal drugs are bitter, often requiring patients to take anti-nausea drugs before ingesting them, he added.
Washington doctors shared their discovery with colleagues in Oregon, which was also grappling with the secobarbital price increase, Eighmey said.
In 2015, 16 of the 132 people who died in Oregon under the state’s Death with Dignity Act provisions ingested the new mixture.
Washington doctors also have been talking with colleagues in California, which passed a right-to-die law last year, becoming the fifth state to legalize the practice, along with Oregon, Washington, Vermont and Montana.
News reports last month suggested that Valeant increased the price as a reaction to California’s law, a contention rejected by company officials.
The increase came in February 2015, a month after the idea was proposed, but the law wasn’t signed by Gov. Jerry Brown until October, the firm noted.
In addition, Valeant said that secobarbital should be used for short-term insomnia, epilepsy and preoperative anesthesia and is not intended for any other use.
“The suggestion that Valeant raised the price to take advantage of a law that had not yet passed, for a use for which the drug is not even indicated, defies common sense,” officials said in a statement.
Valeant officials, along with those from Turing Pharmaceuticals, faced scrutiny in Congress this year after federal lawmakers released excerpts from documents detailing how drugmakers hiked prices to wring more revenue from new medications, including lifesaving drugs.
“Many companies are lining their pockets at the expense of the most vulnerable families in our nation,” Rep. Elijah Cummings, D-Maryland, said in a statement after releasing documents from Valeant and Turing Pharmaceuticals before a hearing on rising drug prices.
Valeant bought two lifesaving heart drugs, Nitropress and Isuprel, then tripled the price for one and increased the other sixfold, The Associated Press reported.
Under Death with Dignity law provisions, it’s up to doctors to choose and prescribe the drugs used to end patients’ lives, Eighmey said. Seconal became the drug of choice when Oregon’s law took effect in 1997 because it was used in the Netherlands, which provided a model for the first U.S. effort.
The drug was a popular sedative widely misused in the 1960s and 1970s, when it was associated with accidental overdoses, Eighmey explained.
It went off-patent in the early 1990s and some generic versions became available. But the drug fell out of favor as other sleeping aids, including Ambien, grew more popular. Because of the drug’s dwindling market, there were no generic competitors when Valeant acquired it and increased the price. Valeant reported the firm has sold only 1,000 units of Seconal since acquiring the brand in February 2015.
New drug of choice?
In 2014, 176 terminally ill patients in Washington received prescriptions to help end their lives and 170 died, according to the state Health Department. Of those who took medication, about two-thirds used secobarbital. The Washington act, which went into effect in 2009, allows terminally ill patients with less than six months to live to request lethal medications from their doctors.
The remaining patients used pentobarbital, a sedative used in death-row executions that became hard to get after European drugmakers cut off the U.S. supply to protest the practice.
As of 2014, at least 725 adults with terminal illnesses had chosen to end their lives with a doctor-prescribed dose of lethal medication in Washington. State figures on Death with Dignity Act patients for 2015 will be released this summer, officials said.
With stored supplies of secobarbital dwindling and the price remaining high, Washington’s concoction may become the drug of choice for most aid-in-dying patients, Eighmey said.
Most patients who end their lives under Death with Dignity provisions are educated and financially comfortable, like Ethan Remmel, a Western Washington University psychology professor and father of two who took a lethal dose of sedatives in June 2011, a year after being diagnosed with terminal colon cancer. He was 41.
The cost of the drug wasn’t a problem for their family, said his partner, Grace Wang, an associate professor of environmental studies at WWU. But she worries that financial need and a lack of insurance coverage might mean other families won’t have the option.
And the idea that a drug company would deliberately hike the price on dying patients?
Dying at home is widely celebrated as the pinnacle of a ‘good death’. It is therefore unsurprising that governments internationally are framing current moves to increase the numbers of people dying at home as a ‘win-win’ situation. People get what they want at the end of their lives and the health system saves money. Result! However, is it really that straightforward? Increasingly, our research group has been thinking about the unpaid workforce we rely on to enact home dying. Who are they? How does this caring work impact upon them physically, psychologically, socially and financially? Why are they so invisible?
It was these questions that drew us into thinking about the gendered nature of palliative care. For this workforce is overwhelmingly made up of women, predominantly older women, whose contribution is overlooked, we would argue, largely because such caring tasks are regarded societally as women’s work; as a normal and natural part of women’s lives in line with their caring, kind, and maternal nature.
When we looked into what little has actually been published on this topic, we found that women who were providing care to a family member at end of life were suffering from a vast array of physical and mental health problems directly resulting from their caring roles. We found that women continue to shoulder more of the caring burden themselves without asking for formal assistance, even when they themselves were in poor health. What’s more, because societies across the Western world are ageing rapidly, and women consistently outlive men, this situation is only going to get worse.
It’s also important to look at what kinds of care women are providing. Women are more likely to provide intensive personal care, and are twice as likely to provide toiletry assistance as men. Conversely, men are more likely to treat caring as a job and welcome extra support in all aspects of care.
Overwhelmingly, this disparity both in the number of women caring than men, and in the differing nature of this care, results from women’s adherence to gendered expectations, from both their families and society in general, that this is something they must do.
It may seem like we’ve painted a fairly gloomy picture, but what is far more concerning is that the picture remains incomplete. Research into palliative care from a gendered perspective is sorely needed if we are ever going to formulate effective strategies to mitigate the impacts – both mental and physical – that women disproportionately experience when providing palliative care.
Its importance is greater still if we ever want to fully understand palliative care as a whole for it is overwhelming a women’s world; as much in the ‘informal’ home-setting as it is the ‘formal’ hospital, hospice and aged residential care sector. Women comprise the majority of palliative care professionals, carers and patients and it is about time we start considering how ideas of gender – the expectations shaping ideas of femininity and masculinity – pervade all aspects of end of life care.
Tessa Morgan, Merryn Gott and Lisa Williams
Te Arai Palliative Care Group, School of Nursing, University of Auckland
Ed: We thank the authors for sharing this timely and important work. We are also excited to announce that we will be working with the authors on a series of blogs exploring gender issues and palliative care.
When my father arrives in the hospice, there is a flurry of activity. Drug charts are checked, vital signs are tested. We all know he has come here to die, but still the idea is that something might be fixed, at least temporarily, and the young doctor and nurses on duty that evening have an air of “sorting things out”. It is a relief to get here; they know what to do. The flat has become a claustrophobic, smelly and unmanageable place for my mother to care for Dad.
The next day, you slide into the room like an elegant cat – without an entourage of junior doctors, a computer on wheels or a stethoscope slung around your neck. You lean over my sleeping father and take him in without saying anything, and then turn to my mother with a smile that is at once kind and serious.
You take us to a side room and tell us that he is nearly finished with his body now, that it is normal and natural and that there is nothing to be done except to keep him comfortable. You say it clearly and calmly, making eye contact with my mother. It is a beautiful day, and you suggest we take a walk and look at the sky, the daffodils, the trees beginning to bud. “He will be with you in these things,” you say, entirely without sentimentality. “It is time to let him go.”
For the first time in the entire period of my father’s cancer, my mother cries. Woman to woman, you look at her and she feels your genuine solidarity. It is a turning point, and from then on my mother prepares to cut free from her husband of more than 55 years.
Over the next days, when on duty, you appear quietly in the room with an aura of respect for the sacred space we have created with flowers, cards and drawings by grandchildren. You never talk loudly to my father as if he is deaf or stupid. You also never adopt the drippy, concerned tone often used by professionals with the ill or grieving. Your gaze is clear and direct, as is the information you give us. Dad is taking his time, he has things to say and his body is not quite ready to close down.
“This is not a medical condition we can treat, or something I can help with drugs or charts,” you say, as I pack away my violin after playing the Scottish folk tunes of Dad’s childhood to him. “This,” she gestures to my son sitting on the bed, the guitar lying on the chair, Mum holding Dad’s hand. “This is all that’s important now.”
There is nothing to do but wait, and I see from your experience and wisdom that you know how hard this is – this endless waiting, which is pregnant with ambivalence. You have seen this many times before.
Thank you for what Cicely Saunders (the founder of the modern palliative care movement) called the “depth of time” you have given to us. Perhaps you spent no more minutes with my dad than any of the other professionals. Perhaps you even spent less time, as you didn’t bother much with symptoms or drugs and interventions that we could all see were pointless. But you met my dying father, my mother and me with honesty, dignity and sincerity, and this is what we will remember and treasure.
Knitting may be great for mental health but it also boasts environmental benefits, according to a textile manufacturer from Yorkshire.
Natural Legacy, a family-run firm based near Pudsey, Leeds, have come up with the innovative idea of creating sustainable coffins, out of wool.
The fully biodegradable resting places are made from 100 per cent pure British wool and began being made in 2009, the Yorkshire Evening Post reports.
After starting in 2009 it now sells around 120 a month, and forecasts to increase to 200 monthly orders by the end of 2013.
Each coffin is handmade from three fleeces, costing approximately £600 to buy and according to quality director, Rachel Hainsworth, the innovative idea is proving popular.
“It is such a unique product,” she told the newspaper. However, “the rapid growth in sales indicates that people like the idea of having a stylish, aesthetically pleasing woollen coffin for their loved ones”.
The gentleness of the natural wool is also “a real comfort to families,” Ms Hainsworth added, saying “people literally like to stroke it when they go up to the coffin to pay their respects and I think families like the fact that it is tactile and warm, it is like their loved ones are wrapped in a blanket”.
Initially the range was developed by a marketing student who came across an odd fact while looking at old records.
An Act of Parliament from 1667 decreed that everyone had to be buried in a woollen shroud to support the woollen textile industry, an idea which proved to be the inspiration behind the firm’s designs.
The coffins are lined with organic cotton and then reinforced with recycled cardboard, as well as jute edges, leaving plenty of space for personal name plate embroidery.
As well as being environmentally-friendly these coffins are made from British wool, using British workers, helping to support the UK wool industry.