‘It’s not worth me having a long-life lightbulb’

Rare insight into attitudes to death among the very old

Elderly_Woman_,_B&W_image_by_Chalmers_Butterfield

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.”

very senior2In 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.

very senior

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.”

Complete Article HERE!

Why You Need A Death Certificate When Someone Dies

by Davis Grey

A Death Certificate

Do you think that a death certificate is just another piece of bureaucratic paperwork you have to take care of? Think again. While it might seem like it’s just one more hassle during an incredibly difficult time for you and your family, the reality is a death certificate is a crucial document to have, especially if you’re an estate executor. Let’s find out why, and how to go about getting one.

The Link Between A Death Certificate And Proof of Death

Put quite simply, a death certificate proves that someone has died. While it might seem crazy that you need to prove that a loved one has passed away, think about all of the ways people could use their death to get out of obligations. Between tax and debt evasion alone, there are a whole host of reasons why someone might want to pass off as dead. Or, on the flip side, ill-meaning individuals can take advantage of someone’s estate if all they have to do is claim a person has died.

Thanks to death certificates, authorities can be reasonably assured that an individual has truly passed and steps can be taken to liquidate an estate.

The Link Between A Death Certificate And Estate Execution

On a more day-to-day level, there is a standard reason that death certificates are issued: they are necessary for someone to be appointed as your estate executor.

Estate executors are intrusted with dispersing your estate and following your last will’s wishes, which means making sure your debts are paid off and your beneficiaries receive their inheritance. A big piece of this is getting in touch with assorted parties like financial institutions, insurance companies, the social security administration, and the Veterans Administration (if applicable) and closing your accounts, paying outstanding bills, and accessing your assets. These institutions will not speak with you unless they have proof that the individual has died and that you are entrusted with their estate. As you can guess, the death certificate is the vital proof you need that your loved one has died, and opens the door for executors to complete their responsibilities.

The Link Between A Death Certificate And Digital Accounts

Many people today have digital accounts with a whole host of providers. Think Facebook, Google, Amazon, and even online dating sites. When a loved one dies you’ll likely want to close these accounts. Sometimes it’s to stop digital notices, other times it’s to ensure no future charges are made to your loved one’s bank or credit card accounts.

Just like financial institutions, many of these digital institutions require a death certificate to prove the account holder has died. Don’t believe us? Just read these past articles on closing a Facebook or a Google account. Sure enough, these major sites want to see a death certificate before they even speak with you.

How To Get The Death Certificate

As we wrote about in more detail, the actual responsibility of filing for a death certificate is generally in the hands of the person preparing the body like a funeral director or crematory. It is just as easy to request one death certificate as it is to request twenty. Or, you can always try VitalChek and have them get it for you. Now that you see how many different institutions will want to see one, you can understand why you’re better off asking for more right off the bat. With a whole bunch handy, you can more easily cross of your estate executor to-do list.

Complete Article HERE!

Doctors should be trained in art of ‘diagnosing death’

By LIZZY BUCHAN

Diagnosing death
‘Diagnosing death’ would prevent unnecessary distress at the end of life.

Doctors need to be trained in the art of “diagnosing” death to prevent unnecessary distress at the end of life, an expert has claimed.

Dr Erna Haraldsdottir, a senior lecturer at Queen Margaret’s University, in Musselburgh, called for a shake-up of thinking on medical intervention for the dying after watching her elderly father-in-law die in hospital.

The 84-year-old had been diagnosed with dementia five years beforehand and his family watched his gradual decline until he was admitted to hospital. Although he was elderly and very frail, doctors attempted to discharge him at one point and tried to resuscitate him as a “do not resuscitate” note had not been arranged.

Doctors were also reluctant to issue a death certificate as they were unsure of his cause of death.

Writing in the European Journal of Palliative Care, Dr Haraldsdottir said doctors need to change their mindsets over when patients need medical intervention and try to “diagnose” death.

Dr Haraldsdottir, who also leads a pioneering research programme at St Columba’s Hospice in Edinburgh, said: “In my own experience, our family believed my father-in-law had a good death, however what was noticeable was the staff’s lack of insight into the situation and understanding of what was happening.

“This caused the family unnecessary upset and distress – which could have been avoided if the medical team had applied the principles of palliative care to the assessment and care.”

Ministers unveiled a five-year plan to put palliative care at the heart of the NHS in December and to ensure a greater openness around death and dying.

It comes after a Glasgow researchers found falling numbers of Scots were dying at home, despite many saying it was what they wanted.

It is more important than ever for hospices to be leading the way when it comes to developing care around death and dying, said Dr Duncan Brown, medical director at St Columba’s Hospice.

Complete Article HERE!

Alumna turns end-of-life conversations from dread to discovery

A hospice and palliative care physician hosts a radio show that aims to revolutionize how we discuss what to many is the last great taboo: death

BY Susan Bell

Dawn Gross interviews her first mentor, Jeffrey Mandel, a hospice and palliative medicine doctor, during the launch of her radio show Dying to Talk.
Dawn Gross interviews her first mentor, Jeffrey Mandel, a hospice and palliative medicine doctor, during the launch of her radio show Dying to Talk.

Dawn Gross ’89 knows how to talk about death.

“I’ve asked hundreds of terminally ill patients, ‘If I had a magic wand, what would you wish for?’ And not one of them has ever answered, ‘Cure me,’ which is staggering to me,” said Gross, a hospice and palliative care physician since 2007.

Instead, patients respond by asking for something that brings them closer to who they truly are, she said, whether it’s being with family or spending time in their gardens.

Gross, who earned her bachelor’s in psychology and neuroscience from the USC Dornsife College of Letters, Arts and Sciences, has years of experience supporting patients with life-threatening illnesses in their own homes. She is currently a member of a hospital-based palliative care team at the University of California, San Francisco.

Just listen

Her first job, she said, is to listen.

“People have a hard time articulating or even knowing what is most important to them when they’re struggling with uncontrolled symptoms,” she said, “whether it’s nausea, difficulty breathing or pain.”

Once those symptoms are brought under control, she helps patients plan their goals of care and helps them identify and realize what they really want to do with the time left to them.

Gross said she’s profoundly grateful for the opportunity to practice her chosen specialty.

001“It’s not depressing,” she said. “It is sad, and I think to untangle the two is important for people to do. But what we do — being with people and supporting them in the things that matter most in their lives — is a gift. I fall in love with people immediately, so when they die, am I sad that they die? You’d better believe it. But what I’m left with is immense gratitude for having gotten to know them and be part of their lives, and hopefully for helping to make their lives the way they wanted.”

A new openness

In January, Gross began hosting Dying to Talk, a public radio show that aims to revolutionize the way people discuss death.

“People are averse to talking about death, but I’ve noticed that once you give them permission to do so, they really are dying to talk,” she said.

“It’s really exciting to have now been given a platform to try and make this conversation accessible to people in an unintimidating format that can also provide anonymity.”

Many forums now exist worldwide for conversations around death, including so-called “Death Cafes,” which bring total strangers together to sit down and discuss death. Gross noted that The New York Times recently ran a year-long series of op-ed pieces and stories about death titled “The End.”

“If you a look at any media outlet, there’s an article every week about death,” she said. “To me that suggests people are eager to talk about it and now we’re giving them permission to do so.”

A very personal inspiration

One of her greatest inspirations in pursuing a specialty in hospice and palliative care was her father, who had always been clear he wouldn’t seek aggressive, curative therapies to prolong his life. When he became terminally ill, he questioned traditional care options, asking, “Why is no one asking me what I want?”

Although her father was eventually able to die in his own home under hospice care, Gross said he taught her to want to ask those questions and to help the rest of the family try to listen to what he needed.

“Watching how my family learned to accompany him on his journey was eye-opening and made me more curious about how to support patients and families at such times.”

Alumna Dawn Gross’ love of end of life conversations shaped her decision to specialize in hospice and palliative care. (Photo/Gurusurya Photography).
Alumna Dawn Gross’ love of end of life conversations shaped her decision to specialize in hospice and palliative care. (Photo/Gurusurya Photography).

While her father was sick, Gross’ mother was simultaneously confronted with a very serious illness.

“My mother has a very different approach to her life and therefore a very different outlook and approach to how she will die,” Gross said. “Seeing these two very different ways of navigating life has given me permission to discover new ways to raise this conversation.”

A fairy godmother

Born in Northern California, Gross spent her teenage years in Portland, Ore. After tagging along on a college tour of USC with her older brother, she decided she liked the university. At age 16, she joined her brother at USC as a resident honors scholar in her senior year of high school.

“I was intrigued by science but always hated the sight of blood,” she said. However, in her freshman year, she chose a biology option, “Introduction to Neuroscience: Man, Mind and Machine” taught by William McClure, now professor emeritus of biological sciences.

“I remember my first day in that class. Professor McClure began to map out on the board how the brain works. I was hooked immediately.”

Admitted into the psychology honors program, Gross focused on neuroscience research, helping map the circuitry of memory. She did a post-baccalaureate premed program at Mills College and an M.D., PhD at Tufts University in Boston.

“I wanted to be a scientist,” she said, “but medicine snuck up on me. It wasn’t until I was in fellowship at Stanford, training in hematology and bone marrow transplants that I realized I loved being a physician because I loved having end-of-life conversations. That was something completely unexpected, and it shaped my decision to go into hospice and palliative care.”

End-of-life conversations are something that many doctors — trained to heal, not to discuss death — find difficult. Why does Gross cherish the experience?

“In my USC admission essay, I talked about wanting to major in psychology and inspire people to reach their highest dreams and then reach higher still,” she remembered. “Now, that’s all I do everyday. I see myself as a fairy godmother. When you’re facing your own mortality, what becomes essential rises to the top and everything else melts away. All you’re dealing with then is what matters most. It’s an extraordinary conversation to get to be a part of.”

Complete Article HERE!

‘The Good Death’: Hard to find, and religion’s role may be to blame

By 

There is no such thing as a “good death.” There is only a “good enough death.”

So writes Ann Neumann in “The Good Death: An Exploration of Dying in America.” A visiting scholar at the Center for Religion and Media at New York University and a hospice volunteer, Neumann takes a close-up look at end-of-life issues and how they are both helped and hindered by faith.

"The Good Death" by Ann Neumann.
“The Good Death” by Ann Neumann. Cover photo courtesy of Beacon Press

“Religion is most prevalent around the deathbed in our country,” Neumann, 47, said in a phone interview from her home in Brooklyn, N.Y. “That is where it is resoundingly proven that we are not a secular nation.”

“The laws, medical practices and corporate regulations that surround death and dying continue to be strongly influenced by religion, whether it is in the delivery of health care through Catholic hospitals, whether it is in the rituals that medical practice is infused with, or whether it is simply in the language that we find acceptable around the dying.”

If “The Good Death” is anything, it is a call for people to examine their own wishes around end-of-life issues and decide what role religion — either theirs or that of their caregivers — will play. Religion, she holds, influences our ideas of quality of life and how far we are willing to go to preserve it.

Neumann has spent time around the dying. Her first up-close experience as a caregiver was with her father’s difficult, drawn-out death from cancer that left her worn-out and overwrought.

In the aftermath, unmoored by her own grief and seeking a way to cope with the death she knew would someday come for her and her loved ones, she decided in 2007 to become a hospice volunteer. Her descriptions of her visits with her patients are among the most moving in the book.

In between she weaves in the history of death in America, from the front parlor to the back room of the nursing home. She chronicles the harrowing right-to-die cases of Karen Ann Quinlan, Nancy Cruzan, Terri Schiavo and Jahi McMath, who remains in a coma in New Jersey, the only state that does not consider her legally brain dead, Bible verses hanging over her bed.

Newmann, reared a Mennonite and now a Catholic, looks at how quality of life is often sacrificed for sanctity of life, often for religious reasons, by health care providers, families and religious leaders.

“We must examine the inequality and the discrimination that the church has built into its position on health care,” she said. “The Catholic Church is so good at managing hospitals, at addressing patient care that we cannot say it is bad on the whole and yet the discrimination against women, the lack of autonomy provided to elders or to individuals like to Terry Schiavo — these families that are put in these difficult positions should be supported by their church. They should be able to make their own decisions.”

Ann Neumann is a visiting scholar at the Center for Religion and Media at New York University, where she is a contributing editor to the Revealer. Her articles have appeared in the New York Times, Bookforum, the Nation, and Guernica. This is her first book.
Ann Neumann is a visiting scholar at the Center for Religion and Media at New York University, where she is a contributing editor to the Revealer. Her articles have appeared in the New York Times, Bookforum, the Nation, and Guernica. This is her first book.

But what about hope? In the book, Neumann echoes the writing of Adrienne Martin, a professor at the University of Pennsylvania, who writes that hope is not always a good thing. It can lead to pain and suffering, both physical and emotional, and result in stretching out an illness in the hope for an unlikely positive outcome.

“It was an area of research that fascinated me because it did question the hands-down understanding we have that hope is always good,” Neumann said. “Hope can be sustaining. It can get us out of bed. But it can also result in the very painful treatment of patients and lead to denial.”

What’s a country with a rapidly aging population to do? The U.S. Census Bureau predicts that by 2050, one in five Americans will be 65 or older and have diverse ideas about end-of-life issues. A Pew Forum survey in 2013 found two-thirds of Americans believe there are some situations in which patients should have a right to end their own lives, while 31 percent say doctors should do everything they can to prolong life.

Start conversations with your loved ones, make your end-of-life wishes clear and know your rights, Neumann said.

“A good death is whatever a patient wants,” Neumann said. “It is not up to me, to their legislators, to their priests, to their families. That is true informed consent. A good enough death is as close as we can get because humans are not perfect. We can get so much closer, but we will never have a perfect death.”

Complete Article HERE!

What the words of a dying doctor taught me about life’s meaning

BY REBECCA RUIZ

when-breath-becomes-air

When I learned of the late Paul Kalanithi’s memoir When Breath Becomes Air, which published earlier this year, I felt drawn to its premise. A young doctor with great ambition receives a terminal cancer diagnosis and reports back from the twilight of his life on his quest to seek and find meaning.

Feeling unsure of my own purpose in life, I wanted Kalanithi’s journey to become a beacon to guide my own wandering. Perhaps, I hoped, he might be some kind of oracle.

But that is not the design of Kalanithi’s gripping, emotional book. You, dear reader, are not meant to passively observe Kalanithi’s final moments, glean his wisdom and walk away feeling assured in your path.

Instead you will bear witness to his yearning, suffering and grace. You will watch as lung cancer annihilates his dreams of becoming a renowned neurosurgeon and doctor-philosopher. You will ask yourself if you’ve ever worked as hard as Kalanithi, who commits himself to relentless hours as a medical resident performing high-stake surgeries — even as he tries to dodge death.

As unbearable as that sounds, the pull of this narrative is magnetic. More than a year into parenthood, I hadn’t finished a single book — yet I could barely put down When Breath Becomes Air. Almost nothing else felt as important.

That the book demands your presence is a credit to Kalanithi’s captivating prose. Whether he is describing in vivid detail a midnight hike in the Eldorado National Forest (“pitch-black, stars in full glimmer, the full moon still pinned in the sky”) or his desire to bridge the worlds of literature and neurosurgery (“I had come to see language as an almost supernatural force”), Kalanithi’s sentences are both urgent and poetic.

Others in a similar position might be tempted to sanitize their life. Here’s a man who is candid about his marital troubles. He confesses that he finds himself drifting into becoming a doctor who just goes through the motions:

All my occasions of failed empathy came rushing back to me: the times I had pushed discharge over patient worries, ignored patients’ pain when other demands pressed. The people whose suffering I saw, noted, and neatly packaged into various diagnoses, the significance of which I failed to recognize — they all returned, vengeful, angry and inexorable.

Kalanithi even admits that he suspected cancer months prior to the official diagnosis. His account would have been richer with an exploration of why he dismissed those prescient instincts, but the reader can’t fault a man who has so little time for self-examination.

When Breath Becomes Air is an imperfect book, but it draws its power and permanency from those limitations.

Kalanithi died before finishing the memoir in March 2015, at age 37. His final passage is a moving dedication to his infant daughter (and is followed by an explanatory epilogue from his wife). But before he writes those tender words, he leaves the reader with a gift of their own:

Everyone succumbs to finitude. I suspect I am not the only one who reaches this pluperfect stage. Most ambitions are either achieved or abandoned; either way, they belong to the past. The future, instead of the ladder toward the goals of life, flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described hold so little interest: a chasing after wind, indeed.

Kalanithi makes no attempt at reassurance. The end is not tidy or filled with comforting platitudes. He makes no effort to find a reason in his death. I had read every page with anticipation, waiting for Kalanithi to share adages born of introspection and tragedy, I had missed the point all together.

Kalanithi’s wisdom lay in wrestling with the toughest questions humans can ask of themselves, even if they go unanswered. That bravery, standing at the edge of the abyss with fortitude, is what gives us meaning. And it’s what made Kalanithi a courageous doctor and human being.

When Breath Becomes Air is essential reading in a world where we try so hard to exercise control over the unpredictable. While the miracles of science and technology are worthy of our praise, we lose something vital when we forsake ambiguity for certainty.

Kalanithi understood that we learn who we are when we remain still in moments of confusion and crisis, when we pause to ask the terrifying questions. And then we keep moving forward even when it feels impossible.

“I began to realize that coming face to face with my own mortality, in a sense, had changed nothing and everything,” Kalanithi wrote. “Seven words from Samuel Beckett began to repeat in my head: ‘I can’t go on. I’ll go on.’”

Complete Article HERE!