Category: Philosophy of Dying

Posted on

Deborah DiSesa Hirsch: Passing of Baby Boomers has sobering subtext

Patty Duke

A lot of Baby Boomers have died recently. Garry Shandling. David Bowie. Glenn Frey. And now, Patty Duke.

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.

My husband has started collecting Social Security and now, Medicare.

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.

Complete Article HERE!

Posted on

A letter to … the hospice doctor who helped us to say goodbye

The letter you always wanted to write

‘There is nothing to do but wait and I see that you know how hard this is. You have seen this many times.’
‘There is nothing to do but wait and I see that you know how hard this is. You have seen this many times.’

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.

Anonymous

Complete Article HERE!

Posted on

Humor and Hospice

by: Kelly Krenzel

Bill_and_Karen

When you meet Bill and Karen, you instantly feel the love they have for one another. Their faces light up with joy when they sneak a glance of each other. A quick wit and robust laughter are at the heart of their relationship. They take turns teasing each other in a healthy back and forth, always with a chuckle and a smile.

Married for 14 years, the pair has experienced many adventures together, one of which was their initial meeting at a tiny café in Luck, Wisconsin, where Karen says she noticed quite the “character” joking with the waitress one morning. She didn’t make much of it at the time until the following day when she returned to the café, and Bill (the character) was there again. He approached her and asked if he could join her for breakfast. “I said I suppose. I got a free breakfast out of it, why not,” Karen said with a laugh. They continued to meet up for breakfast for the following six weeks and quickly got to know one another. “She has not paid me back for one breakfast,” Bill added with a chuckle. After about a month, they went out on an official date, and according to Karen, “The rest is history!” Bill razzes Karen, “You lucky kid, you! I couldn’t run any faster, you were running after me!”

With the same sense of humor and positivity as when they first met, the couple is facing the biggest challenge of their lives together. Bill was diagnosed with lung cancer three years ago. Since then he has gone through multiple rounds of chemotherapy and radiation with no progress, including the last session when he tried a new type of treatment. “I got sick for about a week and a half. I mean sick–in bed, and when I finally got up, I was sick for another week after that. I couldn’t go anywhere or do anything, and then it was time to go back and get another shot. You get them every three weeks,” Bill explained. He and Karen talked with his doctor about discontinuing treatment. “I said as far as I am concerned, it didn’t do me any good except put me right down,” Bill said. “Isn’t this kind of a waste of my time, your time and whoever is paying for this? It cost me $1,500 each time, and that’s with Medicare and private insurance paying, too.”

After encouragement from his doctor, Bill and Karen enlisted the help of Hospice of the Red River Valley in July 2015. “You take the good with the bad. I’m not going to sit around and mope. That’s kind of silly to me. They have no cure,” Bill shared. Instead, he is focused on living the best life he can with time he has left.

Staying at home with the assistance of hospice is something Bill feels great about because he can continue to live his life and his hospice team is just a phone call away. “Hospice is a good thing to have. If we need something, it’s here,” Bill said. “They [hospice] actually do make it better, I have to admit. They give you a sense of confidence. While you’re here, they make you as comfortable as they possibly can. As far as I’m concerned, they are doing one heck of a job.”

Bill is especially fond of his hospice nurse, Kelcie, and social worker Robyn. Both make regular visits to see him. “They are just like family. That’s the only way I can explain it. They really are. If I need supplies, they bring everything I am supposed to have,” he explained. Bill jokes that he also gives Kelcie and Robyn a few pointers in their jobs because he is “quite a bit older than them.”

“Kelcie is great. With the medicine, you don’t worry about anything, and it sure cuts down on the expense. She checks on them every time she comes,” Karen said. “She has provided a lot of relief in just knowing everything is getting taken care of. Just to know that everyone is so helpful and friendly, that helps a lot,” Karen added. Kelcie also found out that the couple enjoys playing games, and right before Christmas she visited the pair with a surprise in-hand. “I’ll be darned if she didn’t come in with a game of Jenga,” Bill said with excitement. Karen notes with a giggle that Bill did not win Jenga when he played Kelcie, for the record.

“Bill and Karen have hearts of gold. It’s enjoyable to visit Bill because even if he is not feeling well, he makes jokes and asks how your day is going. At the same time, he is honest about his symptoms,” Kelcie shared. “Karen wanted to be able to keep Bill at home, and she does a fantastic job helping him and keeping track of his medications. It is nice to be able to help so Bill can continue to enjoy life and stay positive.”

Bill points out that he cannot identify just one thing he appreciates about hospice care, rather it’s everything about the care. “You can’t pick out one thing. You really truthfully can’t, at least I can’t. Everything I’ve experienced since I’ve been in it is great. There’s no way I’d have a complaint, and I’d argue with anybody who did,” Bill shared.

Karen wholeheartedly agrees with Bill. “It’s [hospice] is the best thing that ever happen to us. Emotionally, financially, everything. Hospice is a Godsend,” she said. “That’s a nice way of putting it, actually,” Bill echoed. Initially, both Karen and Bill thought hospice was only for the last days of life. “I thought you started hospice when there was no hope of anything. That’s definitely not true,” Karen said. “We didn’t realize how completely extensive the services were that hospice offers, including the 13 months of after-death support. Hospice makes the last months or years of your life much better. It’s a super organization.”

As the days go by, Bill enjoys many of the things he always has, like trips to Sandy’s Donuts every Monday, Wednesday and Friday, and visits to his granddaughter’s lake cabin near Perham. “I tell Robyn when we go to the lake for a weekend, that way she calls the [hospice] team down there to let them know I’m in the area in case something would happen,” he said. The couple has also planned a large family gathering in June of this year with 60-plus friends and relatives planning to come, including their five children and many grandchildren and great grandchildren. While they await the summer months, they spend each day appreciating each other and the love they share. “We’re lucky to have each other,” Bill said with a big smile.

Bill_quote_story

Complete Article HERE!

Posted on

Physician-assisted dying: A Jewish community perspective

‘It may be impossible to achieve consensus on many of the issues surrounding physician-assisted dying’

By Shimon Koffler Fogel

"Surely we can all agree that every Canadian should have access to other means of alleviating suffering before contemplating a physician-assisted death," writes Shimon Koffler Fogel, CEO of the Centre for Israel and Jewish Affairs in Toronto.
“Surely we can all agree that every Canadian should have access to other means of alleviating suffering before contemplating a physician-assisted death,” writes Shimon Koffler Fogel, CEO of the Centre for Israel and Jewish Affairs in Toronto.

Physician-assisted dying remains a deeply personal and contentious issue among Jewish Canadians. Some in our community support physician-assisted dying, focusing on the plight of those stricken by a terminal or debilitating illness with no possibility of pain relief. Others oppose physician-assisted dying based on traditional religious grounds or due to concerns about a knock-on effect toward more broadly applied euthanasia.

The Supreme Court of Canada decision in Carter v. Canada recast this vigorous debate by determining that Canadians, under certain circumstances, will have a right to physician-assisted death. The remaining question is how this decision should be implemented.

While there is a vibrant diversity of opinion among Jewish Canadians on this subject, there are also points of unity that reflect common values within broader Canadian society.

Who’s eligible?

One such point of unity comes in the form of concern over the eligibility requirements for physician-assisted dying. Many who support physician-assisted dying base their position on situations of terminal illness or advanced stages of severely debilitating and painful diseases for which there is no relief or cure. However, the Supreme Court decision did not limit physician-assisted dying to such circumstances.

Parliament must now choose between two distinct approaches to physician-assisted dying. The first views physician-assisted dying strictly as an end-of-life option, a means for those who are nearing death to choose how and when to die. This is consistent across all North American jurisdictions where physician-assisted dying is permitted, including Quebec.

The second approach, predominant in European countries like Belgium and the Netherlands, does not restrict physician-assisted dying in this way. In these jurisdictions, children and individuals with psychiatric disorders or minor medical conditions can be eligible for a hastened death — considerations that played no part in the Supreme Court determination.

Quebec’s physician-assisted dying law, which was subject to significant, thoughtful deliberation and passed with strong, cross-party consensus, could be instructive for federal legislation in this context. In Quebec, a patient seeking physician-assisted dying must be competent and fully informed, at least 18 years of age, at the end of life, suffer from an incurable illness, be in an advanced state of irreversible decline in capability and experience constant and unbearable suffering.

Concerns persist

Even so, significant concerns persist regarding the balance between the right to physician-assisted dying set out by the Supreme Court and the conscience rights of health-care practitioners, including physicians, pharmacists and nurses. Many have deep religious, moral and professional convictions that consider referring their patients to another, willing provider to be an unconscionable act.

Yet Parliament’s special joint committee on physician-assisted dying recommended that, at a minimum, health-care providers who object to physician-assisted dying for reasons of conscience should be required to provide a referral. This disregards the Supreme Court instruction that “the charter rights of patients and physicians will need to be reconciled in any legislative and regulatory response.”

Several viable options have been put forward to balance the seemingly competing rights of patients and health-care practitioners. For example, the Canadian Medical Association has proposed a “separate central information, counseling and referral service” to which objecting physicians would direct patients seeking physician-assisted death. Another possible accommodation would require an objecting physician to notify a designated administrator of their medical institution, who would then be responsible for transferring care in a timely manner.

Others have suggested a model where physicians would be required to report all requests for physician-assisted death to a government body that would have a registry of physicians to whom it could refer patients.

Pleasing all parties

Whatever the specific approach, with creativity and thoughtfulness, the rights of objecting physicians and patients can be harmonized. What’s more, such a process would likely facilitate improved access to physician-assisted dying for patients. The Canadian Medical Association estimates that 30 per cent of its members would be willing to provide physician-assisted death. However, it is unlikely that the remaining 70 per cent would know to whom they should refer a patient. A third-party agent would be well-suited to ensuring timely patient access while preventing the violation of physicians’ conscience rights.

Regardless, physician-assisted dying must not be the only, nor the default, end-of-life option available to patients. While respecting the division of jurisdictional responsibilities, the federal government should do its utmost to ensure that palliative care of the highest quality is universally accessible and that first-rate psychosocial supports are made available to all Canadians separately from physician-assisted dying. While it may be impossible to achieve consensus on many of the issues surrounding physician-assisted dying, surely we can all agree that every Canadian should have access to other means of alleviating suffering before contemplating a physician-assisted death.

Complete Article HERE!

Posted on

Pet Peace of Mind

Keeping hospice patients and their beloved pets together.

ginger018

If you’re a pet owner, you know that a dog, cat or other ‘furry friend’ can truly become a part of your family, a part of your world.

So it’s no surprise that those diagnosed with a debilitating or terminal illness sometimes worry more about their four-legged friends than themselves. What happens if they can no longer care for their pets? Where will those animals live once their owners are gone?   Pet Peace of Mind is a nationwide program that helps hospice patients like Donna Sarner keep their pets near them during their end of life journey.  The program also helps place the pet after the patient dies.

Here is Donna’s story as told by Kristine Murtz, Volunteer Services Manager and Pet Peace of Mind Program Coordinator at Cornerstone Hospice:

PetPeaceMind1_0
In particular, Pet Peace of Mind demonstrates the holistic approach that is at the heart of hospice . The emotional connection that people have with their pets is one to be respected and nurtured.

Donna Sarner is 68 years old and lives in a small, rural town in Central Florida. She was diagnosed with adenocarcinoma of unknown origin, a cancer which causes her a great deal of pain throughout her back, abdomen and legs.  She has no caregiver, no nearby family, and limited financial resources. Despite the challenges, Donna maintains a positive yet realistic attitude and wants to enjoy the time she has left with her dogs as well as the cats, vultures, raccoons and bears she feeds outside.

Donna was admitted to Cornerstone Hospice services in October of 2015 and is supported by a dedicated team who go beyond the call of duty.  The many programs we offer are about helping patients and families feel like things are going to be “ok”.

In particular, Pet Peace of Mind demonstrates the holistic approach that is at the heart of hospice . The emotional connection that people have with their pets is one to be respected and nurtured.

Donna has taken better care of her pets—including the buzzards outside—than she has herself. She wants to have her dogs with her as long as possible, “until the very end.”

Donna’s Social Worker, Renee, had to wait several months before approaching advance directives and funeral plans with Donna, but PPoM visit opened the door to this by discussing how her “babies” will be cared for when she no longer can.

Donna spoke with pride about each of her dogs: Ozzie, a 6-year old Australian Shepherd/St. Bernard mix (I know, right?!); Roxy, a 5-year old Chow mix; Bertie, a 4 year-old Catahoula mix; and her beloved old guy “Highknee,” who is a 15-year old poodle mix. He’s only about ‘knee-high’, hence the name. Along with caring for the dogs, our program arranged to have the stray cats she feeds spayed, neutered, and vaccinated. We haven’t really considered what the buzzards might need!

Pet Peace of Mind volunteer Karen Sanders transported each of the dogs to one of our partner veterinarians to get them vaccinated and any necessary medications; she continues to deliver dog and cat food to Donna. We’re providing little Highknee with some medication for his congestive heart failure, and I’ve promised Donna I would personally care for him after she cannot. She also understands that it may not be realistic to have the three large dogs with her until the end, and we are already looking for loving homes for Ozzie, Roxy, and Bertie.

See the flyers below to learn about each dog.

Learn more about Pet Peace of Mind by visiting their website.

Bertie

 

Ozzie

 

Roxy
Complete Article HERE!

Posted on

“Hospitals are not a good place to die”

End-of-life doula Anna Lyons on why we need to rethink our attitudes to death

By

holding hands

I’ve been with the dying many times, both in a personal capacity and as a health care professional. As an end-of-life doula my work is centred around supporting people and their families at end of life. My experiences have led me to agree wholeheartedly with the BMA in its recent report: hospitals are not the best place to die.

An overwhelming majority of us want to die at home, yet statistics show the reality is that 54% of us will die in hospital. But in my opinion, hospices are for the dying. Home is for the dying. Hospitals are not. The raison d’etre of end of life care is to help people experience a ‘good death’. We will remember how someone we love dies forever. The impact of a bad death is far-reaching. Candy Chang, creator of the ‘Before I Die‘ wall, a global art project that invites people to reflect on their lives and share their personal aspirations on a public wall, describes the fallout as creating ‘circles of mayhem’ for generations.

What is a good death?

Every person will have a different idea about what would constitute a good death for themselves or their family. Much of the debate over end-of-life care comes down to two questions:

  1. Is a good death one where the medical team did everything to save a life?
  2. Is this still true if there is little chance or no of a happy outcome?

Culturally, we have always seen a good death as one we have ‘fought’ against. It may be time to consider otherwise. Many treatments are aggressive and futile, robbing the last remaining quality of life a patient has.

Perhaps a good death is the accepted one. One where the dying person is in control, can be at home, can have their pain and symptoms managed. End of life care must be entirely individualised and person-centred, only then can we begin to offer the excellent end of life care that everyone deserves.

when-hospitals-go-wrong

The refusal of a medical team to end active treatment to the detriment of the patient was exemplified in the death of a very close friend of mine. They threw everything they had at giving him longer than his twenty-something years. They didn’t give up ‘actively’ treating him until the end. He died clinging to the belief that he was going to live. That last precious year of his life was a tragic mess of chemotherapy, life-prolonging operations and colourless hospital wards. The treatment had destroyed the very essence of who he was, long before his heart played out its final beats.

I believe if we discussed end of life issues regularly, we wouldn’t find them so tricky to broach. Issues about death and dying should be taught in schools as part of the PSHE syllabus from primary and onwards. During Year 13 tutor time when we teach young adults to fill in job application forms, we should also be filling in advance directives with them.

Issues with control at the end

In a study by the Economist Intelligence Unit, the UK was crowned the best in the world for provision of end-of-life care. The author of the report, however, said that there is room for improvement, especially in symptom control and communication. Could this improvement be guided not by government policy or hospital administration, but by changing the way we look at death?

The recent BMA report concluded that some doctors continue to treat the dying when active treatment is no longer of any benefit. One reason it suggested was because of pressure from the patient and their loved ones. This is understandable – it is often too difficult to let go of the ones we love. The report also stated it is because if doctors acknowledge there’s nothing more that can be done, that they’re admitting defeat.

chemotherapy

I knew a woman worked with the dying so when she was dying, although she knew there was nothing that could be done, she didn’t want to die. She wasn’t ready: she had a life to lead, a world to see and children to watch grow and guide. She was looked after by the same medical team she had worked alongside for many years. They couldn’t let her die either. If they let her die, they would have failed one of their own. They had to try, even though they knew it was futile. They couldn’t give up, even though they knew the treatment she would most likely shorten her life, not extend it. Her original prognosis with palliative care had given her up to a year. She died two weeks into aggressive treatment, four weeks after her initial diagnosis.

We should not see the death of a dying patient as a failure. Death is not the loss of a battle. Death is a natural part of life. If we could see it that way, we might be able to approach it differently. Our goal should be helping someone live as good a life as possible right up until the very end. No one will ever experience a “good death” if our focus is active treatment at all costs.

senior woman

The report set out that treatment at end-of-life should be ‘appropriate and proportionate’. Dying with care, deference and dignity, and on our own terms is the very least we should be able to offer. A lady I worked with lived an incredibly full life: alone and happy. She went dancing and played snooker. She cooked everything from scratch everyday. Her breathlessness became untenable and she finally went to the doctor. She had cancer, which was slow to progress even though she chose a palliative care pathway. She accepted her life-limiting prognosis with the wisdom of one who knew herself well and contemplated mortality more often than many. She died in a hospice, surrounded by her family. Hers was a peaceful death. Peaceful and on her own terms.

One aspect of the report that I feel most strongly about is that doctors should be receiving training and CPD on communication and how best to have difficult conversations. One junior doctor who was interviewed for the report said: “I found it very difficult to talk to patients about dying, prior to working in a hospice, because…as a junior doctor we’re not taught very much…”

A shift in thinking

We all have to take responsibility for communication and the decisions we make. It’s terribly difficult when we’re unwell and vulnerable to hear these truths. If we’ve never considered end-of-life until our own life’s end it’s no wonder we find it so hard. If we discussed these issues regularly we wouldn’t find them so hard. We need to break down the ingrained cultural barriers that prevent us from talking about death and dying

Let’s all take on that responsibility. Let’s talk about it: openly and without fear. It’s too much to have that conversation for the first time when we are facing death. It’s much easier to talk about it while we’re living a healthy life.
We need to ask ourselves what is a good death for us.

Why do we value quantity over quality of time? Why do we cling so dearly to the notion that a life well lived is the longest? Sometimes doing nothing is the most courageous path. Sometimes accepting there’s nothing left that can be done is the bravest choice. Some may describe such a decision as “giving up”. Pursuing treatment until the very end, on the other hand, is lauded as “being a fighter”.

doctor and patient

Do these words,”battle” and “fight”, compound medical teams’ feelings of failure when an unavoidable and imminent death is in front of them? Changing our language may help us to change the way we think. Illness and death are a part of life. Loss is not a failure: not ours, and not our doctors’. Perhaps redesigning our expectations and language at end of life could begin with Paul Kalanithi’s beautiful words:“The physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.” If they did, I believe death and dying could be a richer and better experience for everyone involved.

Complete Article HERE!

Posted on

With Fear, Determination And Poetry: How Great Writers Face Death

By The NPR Staff

Maurice Sendak
Children’s book author and illustrator Maurice Sendak, who died in 2012, spent much of his life obsessed with death. In 2011 he told Fresh Air’s Terry Gross: “There are so many beautiful things in the world which I will have to leave when I die, but I’m ready, I’m ready, I’m ready.”

Katie Roiphe’s preoccupation with death goes back to her childhood, when she contracted virulent pneumonia at the age of 12. She was sick for a year and thought she was going to die.

Her terror of death was reignited many years later when her father died. It was then that Riophe found herself turning to great minds to see how they confronted mortality.

She initially told herself that she wanted to “understand it better,” she tells NPR’s Melissa Block, but she soon realized that was a lie. “I was actually trying to see it,” she explains. “It sounds really simple, but it’s actually a very difficult thing to do. So that was my goal, to sort of focus in really closely on the final days of these writers and thinkers, and just look.”John Updike

In The Violet Hour, Roiphe describes the last days of Sigmund Freud, James Salter, Maurice Sendak, Susan Sontag, John Updike and Dylan Thomas. She talks with Block about how these writers and thinkers accepted, or railed against, their fate.

Interview Highlights

On John Updike, who wrote poems in the hospital after being diagnosed with lung cancer

It was amazing. He had very little time — just weeks before he was dead. I actually went up and looked at the manuscripts and you can see in his handwriting how arduous it was. At that last moment, when most people would just be watching television or railing against the universe, that was what he did and I found it very moving. …

The poems have a sort of quality of reporting — that he’s bringing news. And he talks about writing as turning pain into honey, which I find a really beautiful way to think about what writers do: taking this incredibly awful — maybe the most awful thing that can happen to you — and turning it into honey just with words.

On Susan Sontag, who endured brutal treatments for cancer

She had written so eloquently about the importance of not turning illness into a metaphor — of not embellishing and fantasizing and being really realistic and rational when it comes to your own illness — and she was unable to do that ironically in her own life. …Susan Sontag

She thought to herself she would be the exception even to the rule of mortality. That somehow, as she had with her earlier cancers famously, she was going to defeat death in some way. And even though the odds were against her — she was 71-years-old getting a bone marrow transplant — even in those situations, she felt this time she wouldn’t die.

At the one hand, it’s the opposite of a good death, it’s almost the anatomy of how you don’t want to die. On the other hand, I did see something kind of heroic in the power and force of her will.

On how mortality was a constant companion for writer and illustrator Maurice Sendak

He was certainly preoccupied with death for his entire life, and one of the things that fascinated me about him is the way, in his art and famous children’s books, he worked on this problem year after year. Like when his parents died, or when his brother died, he just kept working on this problem and worked it through in drawing after drawing and draft after draft. And he sort of came out freeing himself to a certain extent from this obsession. He was very depressed at certain points of his life and he used his art as a way of countering that. It was a sort of medication for that almost.

On Sendak owning John Keats’ death mask

It’s really very beautiful. When I saw it — he has it in a guest room with a blue bedspread — there are kind of stuffed animals on the bed. It’s a very bizarre scene and very Sendak, and I thought to myself, “Who would ever want to own Keats’s death mask?”The Violet Hour

And then I looked at it and I realized I knew exactly why you’d want to own Keats’ desk mask: Because in a way what I was doing in this book was writing death masks. That urge to preserve the moment, and Annie Leibovitz did it with her famous photographs of Sontag, and Sendak himself drew the people he loved: his partner of many, many years after he died, and his family members right before they died.

There’s something about capturing that moment in art that I actually do completely understand — both the reason you’d make Keats’ death mask and the reason you’d want to own it.

On her idea of what a “good” death would be

I feel like the thing that mostly happened with this book is I came away marginally less afraid, which sounds like not that a big deal. But given my panic about death at various points in my life, [this] was liberating to me. In terms of a good death, I did feel that this prolonged medical struggle of a Susan Sontag where you’re chasing after any possibility of medical salvation seemed like not a good idea, and the way of working your way into accepting what’s happening the way Sendak did and the way Updike did seems preferable to me.

But one doesn’t always have control, and that was one of the things I really realized in writing about these deaths.

Complete Article HERE!