Other Options to Hasten Your Death

dyingathome

Voluntary Stopping of Eating and Drinking (VSED)

To voluntarily stop eating and drinking means to refuse all food and liquids, including those taken through a feeding tube, with the understanding that doing so will hasten death. This is an option for people with terminal or life-limiting diseases who feel that with VSED their dying will not be prolonged. One of the advantages of this decision is that you may change your mind at any time and resume eating and drinking.

The US Supreme Court has affirmed the right of a competent individual to refuse medical therapies and this includes food and fluids. This choice is also commonly accepted in the medical community.

Before You Start

You must prepare to voluntarily stop eating and drinking. It’s not something that can or should be started the day it is first discussed.

  1. Talk with your physician to let them know of your plans. Talk with your physician about all your medications, and ask if a sedative or pain medication will be available to keep you comfortable.
  2. Complete an Advance Directive stating in writing that voluntarily stopping eating and drinking is your wish. Have your physician sign orders to withhold life-sustaining therapies and all resuscitation efforts.
  3. Talk with friends and family members who might care for you during this process early about your wishes and why you may want to take this course. Their support is crucial. However, beware that for many people families are often opposed to VSED and can pose a barrier.
  4. Finalize your business and financial affairs, make funeral and memorial plans, and gather your family members to share memories and say your good-byes.
  5. If you reside in a care facility, discuss your wishes with the staff and nursing director. You will need the staff to provide support and assistance.
  6. If you are already receiving hospice care, your team can help you prepare. If you are not on hospice, ask your physician for a referral to a local hospice provider. Usually hospice will provide supportive care once you start the process.
  7. If your illness is not one that is likely to cause death within six months, arrange for a psychological evaluation for depression and decision-making capacity by a mental health provider. This will reassure family, physicians, and others that your mental status is sound and this decision well considered.

Process

You can live for a long time without eating, but dehydration (lack of fluids) speeds up the dying process. Dying from dehydration is generally not uncomfortable once the initial feelings of thirst subside. If you stop eating and drinking, death can occur as early as a few days, though for most people, approximately ten days is the norm. In rare instances, the process can take as long as several weeks. It depends on your age, illness, and nutritional status.

At first, you will feel the same as you did before starting VSED. After a few days your energy levels will decrease and you will become less mentally alert and more sleepy. Most people begin to go in and out of consciousness by the third day and later become unarousable. Hunger pangs and thirst may occur the first day, but these sensations are usually tolerable; discomfort can be alleviated with mild sedatives or other techniques such as mouth swabs, lip balm and cool water rinses.

Since dehydration will most likely be the cause of death, it is important not to drink anything once you start. Even sips of water may prolong the dying process.

I wish I could say [my father] died a gentle death. But I’m not so sure. I wish doctor-assisted death had been available to my father. I believe it is what he would have wanted.

—CHRISTOPHER STOOKEY, MD

We recommend that all medications be stopped except for those for pain or other discomfort. Stopping medications for heart problems or diabetes, for example, may speed up the process.

Finally, one of the advantages of VSED is that you may change your mind at any time and resume eating and drinking.

People who begin this process often express a sense of peace that they can finally “stop fighting.” Some people describe a sense of euphoria or pleasant lightheadedness. There is an analgesic effect caused by dehydration that may explain this response. With dehydration, people often need less pain medication, urinate less, have less vomiting, and breathe more easily due to decreased congestion.

Resources

  • Read this story, in which Christopher Stookey recounts his father’s death by voluntarily stopping eating and drinking.
  • Browse peer-reviewed, academic-journal articles on the subject.
  • Watch this video, in which Phyllis Shacter describes her husband’s dying after he decided to voluntarily stop eating and drinking:

 

Not Starting, or Stopping Treatment

For some terminally ill people, aggressive medical treatment may not be helpful and may prolong the dying process without improving quality of life. Under certain circumstances, treatments can increase suffering, ruin the remaining quality of life, or even shorten life.

Stopping treatment can result in a peaceful death but it may also result in increased discomfort. Consult with your physician and arrange for optimal palliative (comfort) care before stopping treatment.

Stopping treatment can be combined with hospice and palliative care or voluntary stopping eating and drinking to shorten the dying process and reduce suffering.

Palliative Sedation

For dying people experiencing so much pain or unmanageable symptoms that they cannot get relief from medications unless the dose is high enough to make them unconscious, palliative sedation provides enough medication to keep them continuously unconscious and thereby free of pain and symptoms. All nutrition and hydration is stopped, and they usually die within a few days.

People using palliative sedation should be monitored around the clock to be sure the sedation is adequate. While this intensive monitoring can sometimes be provided in the home, it is usually provided in a skilled nursing or inpatient hospice facility.

Many [people] claim that palliative sedation effectively eases the suffering of patients when other means fail to do so. However, it is an unacceptable option for most terminally ill adults whose primary concerns are losing autonomy, quality of life and their dignity.

—ANN JACKSON

While palliative sedation is an ethical and legal end-of-life option, it is not necessarily a right. While you can request palliative sedation, it is up to the medical provider to determine if it is appropriate. Some physicians and hospices are reluctant or unwilling to authorize palliative sedation. If having the option of palliative sedation is important to you, discuss it with your hospice or other medical provider well before it becomes necessary.

Complete Article HERE!

How to prepare for a good death

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Wise words and solid advice from BJ Miller, who thinks deeply about the end of life as head of the Zen Hospice Project.

Death is an uncomfortable topic. Although we’re well-acquainted with platitudes that remind us to seize the moment and live each day like it’s our last, few of us devote real time to envisioning the end of our lives — or the lives of those we love. In contrast, this is a focal point for BJ Miller, palliative care physician and executive director of the Zen Hospice Project, a San Francisco-based nonprofit that’s focused on improving our experience of death. His TED Talk, What really matters at the end of life, prompted such an outpouring of response that we hosted a Q&A on Facebook to hold a larger conversation about end-of-life care, dying with dignity and providing support for patients and families. Here are just some of the questions — and Miller’s answers.

Based on your experiences, what do you find that most people really want at the end of life? – Emilie S.
In general, people yearn for comfort, for their loved ones to be well cared for, to be unburdened and unburdening, to find some sense of closure and peace. But those are generalities and I would encourage all of us to remember that dying people are living and to treat them accordingly. There is so much room for personal preference.

What are good ways to talk to kids about death? – Michelle Q.
It’s important to remember that kids are not just miniature adults. This big topic, like others, needs to be couched in their developmental stage. In general, it’s helpful to avoid euphemisms or overly indirect language. Kids are generally much straighter shooters than we adults. There is a field called Child Life Services that has a lot to say about this subject and can be a great resource.

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People often say they don’t like hospitals; that mental block keeps them from spending time with someone they care about at the moment they need it most. What advice do you have for people who have a loved one in a hospital? How can each of us make that space kinder and better for the senses? – Kate T.
Little things go a long way. Bringing in photographs, familiar objects, flowers are, in my book, always wonderful. Of course, you can always bring in fresh baked cookies — even if your loved one can’t eat, engaging the senses can be potent. Those are some ideas around the external space. Of course, it’s always helpful to cultivate internal spaciousness by being a source of calm.

Death is a hard subject to talk about. How do we talk about this with our families so we can plan? – Danny K.
Several US-based organizations come to mind, including the Conversation Project and the Coalition for Compassionate Care of California. Another tool that people seem to love is the card game, My Gift of Grace. At Zen Hospice Project we also proudly host “death cafes” as a social engagement, and also offer a mindful caregiving program for anyone involved in facing the challenge at end of life or anyone interested in exploring more about this topic.

How does a non-clinical person learn how to care for others at the end of life? It seems like many of us will be in that position. – Don D.
This is exactly why we created the Mindful Caregiving education program at Zen Hospice Project. Estimates are that nearly one third of American adults will either need to receive or provide care to a loved one. We realize there are very few resources to support family caregivers and “informal caregivers” and that the work can be grueling. Zen Hospice Project’s educational curriculum is uniquely designed to enhance and support the wellbeing of both the patient and the caregiver. The program’s balance of social, medical and spiritual practices enables formal and informal caregivers, doctors, nurses and administrators to experience compassion and resiliency at the bedside while reducing burnout and enhancing care.

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Do you have any advice for caregivers about how they can take care of their own mental health? – Ella C.
We know from studies what works. There are two major themes for self care: one is some reflective practice, whether yoga or meditation or walking in the woods; the other is some sharing, talking, processing with people you know and trust. Especially with people who do similar work. Beyond those two major points, I would add to be good to yourself and don’t lose yourself in the role.

What do you think about end of life dialogue being considered as aphysician-reimbursed service in the United States? Given your experience, what do you think are the most important pieces of the conversation? How could physicians be better equipped to have this conversation? How could mindfulness training inform this service? – Liz M.
I’m very excited about this new legislation, both practically and symbolically. The key points are to have an open and ongoing conversation with your physician as well as your family or proxies. In fact, I think the single most important thing you can do is to name your proxy, because the situation needs to be read in real time. Remember this is not a single conversation but one that requires updates over time. Training clinicians to have this conversation is another matter and requires time: I recommend reading Atul Gawande’s book, Being Mortal, as a great resource. Insofar as mindfulness allows us to be more present in difficult situations, it can help set the stage for a more fruitful conversation.

Do palliative health centres offer psychological or other support for families after a loved one has passed? – Kasia S.
All certified hospice agencies are required to offer bereavement services to their communities. Admittedly, these services are poorly funded and generally underdeveloped. There is so much more work to be done helping families process what’s just happened and also to protect the new tenderness they may feel as they head back into the world. On an individual basis, many psychotherapists specialize in grief counseling and can be wonderful resources. On our way to developing more formal programs, we happily receive family members long after the death of their loved ones to revisit the house and the Zen Hospice community.

Can you offer resources for education material, guides for conversations and so on in languages other than English? – Julien G.
A great place to start would be to reach out to your local hospice or palliative care organization. You may also check with the National Hospice and Palliative Care Organization, the Center to Advance Palliative Care or the American Academy of Hospice and Palliative Medicine. You are pointing to a real need for cross-cultural understanding on the subject.

 Complete Article HERE!

The Violet Hour: Great Writers at the End by Katie Roiphe review – how to cope with death

This study of Susan Sontag, Sigmund Freud, John Updike, and how they coped with the mystery of extinction, is also a memoir about brushes with mortality

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Katie Roiphe: ‘I think if I can capture death on the page, I’ll repair or heal something. I’ll feel better.’

Katie Roiphe begins her study of writers in their last hours with the story of a near-death experience: her own. At the age of 12 she began coughing up blood, but decided not to tell anyone – not her parents, or sisters, or doctor. She had in fact developed acute pneumonia, and after an operation that removed half of a lung she came out of hospital weighing 60lb, “too weak to open a door”. Ever since that narrow escape, death became her obsession, but one that continued to defy understanding or articulation. Who could make sense of such a thing? Her answer: great writers, specifically great writers as they approached death’s door. “I think if I can capture death on the page, I’ll repair or heal something. I’ll feel better. It comes down to that.” This mini-memoir, and a coda, are the most compelling parts of The Violet Hour. They bookend a sequence of five case studies of writers whose thoughts on mortality are often arresting, sometimes moving, yet never add up to a coherent vision of what Henry James called “the distinguished thing”.

Roiphe (above), an essayist, teacher and contrarian, is a woman up for a challenge. Her most recent books – a study of literary unions, Uncommon Arrangements, andIn Praise of Messy Lives, a scattershot broadside against the way we live now – reveal her tough, unbiddable, non-ingratiating character. Fittingly, her first subject is Susan Sontag, a writer whose personal and intellectual fierceness could be Roiphe’s model. Sontag’s determination to outface death became part of her legend. She had already survived cancer, twice, when she was diagnosed with leukaemia in 2004. Believing herself to be “exceptional”, she rejected the evidence, adopting a get-well-or-die-trying attitude that caused intense anguish among the people who cared for her – her son David, friends, nurses, hired hands. She took up cudgels once again, enduring chemo and the dangerous procedure of a bone marrow transplant. The treatment caused her shocking physical agony. At this point I couldn’t help thinking of Woody Allen’s line: “I don’t want to achieve immortality through my work. I want to achieve it through not dying.”

Susan Sontag with her son. David, in 1967.
Susan Sontag with her son. David, in 1967.

Sontag is an extreme case – and the only woman – in this book. Her example is unlikely to make Roiphe, or anyone, “feel better” about death. Sigmund Freud, on the other hand, adopted the opposite approach. Even as a young man he disliked the idea of “prolonging life at all costs”. Stricken by an inoperable cancer of the jaw, he refused any painkillers other than aspirin. “I prefer to think in torment than not to be able to think clearly,” he said. Was his stoicism a better, braver way to face the end? As Larkin wrote in “Aubade”, “Death is no different whined at than withstood”. His disciples believed that Freud had no terror of the end, but Roiphe wonders if he protested his indifference too much: he may have been trying to persuade himself that he didn’t care.

Shadowing Roiphe’s book is a tentative desire to find something consolatory – a truth, a meaning – in death. Can writers teach us how to die? The uncertain, provisional nature of her project is evident. Instead of a continuous narrative, she writes in discrete floating paragraphs, as if conducting a philosophical investigation. Either that, or she doesn’t quite know how to structure her argument. Maurice Sendak, a writer and illustrator she has revered from childhood, described death “as if it is a friend who is waiting for him”. He suffered a heart attack at 39, but lived on till his 80s. He owned Keats’s original death mask and would take it out “to stroke the smooth white forehead”. When his lover died, Sendak drew his corpse, obeying the creative instinct “to turn something terrible into art”. Here Roiphe does get at something useful, which is the consolation of work: “For the time it takes to draw what is in front of you, you are not helpless or a bystander or bereft: You are doing your job.” (I would take “or bereft” out of that sentence.)

John Updike, characteristically, worked unto the last, writing some of his most poignant poems (in Endpoint) from his hospital bed. Like Freud, he cleaved to stoicism in considering death, but unlike him had sought comfort in religious faith and sexual adventure, the latter his way – or at least his characters’ way – of cheating mortality: “If you have a secret, submerged, second life, you have somehow transcended or outwitted the confines of a single life.” In an almost too-perfect illustration of his twin drives we learn that Updike plotted Couples, his great novel of adultery, while in church – “little shivers and urgencies I would jot down on the program”. The oddness of this chapter, however, concerns what happened between Updike’s family during his last illness. His first wife Mary and their four grown-up children seem to have come a cropper under the Cerberus-like vigilance of his second wife Martha. The children felt that Martha, perhaps with her husband’s tacit agreement, restricted their “alone-time” with Updike. This is interesting as gossip, but I can’t see how it enlarges our understanding of the writer or his work.

Dylan Thomas in 1946.
Dylan Thomas in 1946.

Even less illuminating is the record of Dylan Thomas’s bibulous last days in New York, swaggering – or staggering – from hotel to pub to hospital and thence into a coma. Roiphe notes that myths have clustered around his death, and the causes of it. Some still argue that he “wasn’t an alcoholic”. Seriously? Put it this way: if Dylan Thomas was not an alcoholic then his was an even more horrifying personality than at first appears. Addiction would at least explain, if not excuse, his lechery, his flakiness, his self-pity, his self-loathing, his tendency to steal from his friends, and the fact that he had written only six poems in his last six years. At 39, Thomas is the youngest to go of this small assembly and the one whose death I felt least inclined to lament.

The Violet Hour does, however, rally at the end. For reasons the author doesn’t entirely understand she seeks an interview with James Salter, then 89 years old, and nearly the last Great American Novelist. To her surprise he agrees to talk. Perhaps it is her contact with a living subject, perhaps it is Salter’s wry, Delphic way with words, or the fact that he came close to death as a fighter pilot in Korea, but something is unlocked by their encounter and Roiphe at last identifies what her quest has been about – not death but the fear of death: “The knowing you are about to die. The panic of its approach … That’s what I’ve been trying to write my way through.” It returns her to another formative moment in her life, the sudden collapse of her father – a heart attack in the lobby of his building – and her belated realisation that he must have felt pain in the minutes before he died. She is excruciated by the idea of his pain, and that he may have panicked. “The idea that he didn’t have time to be afraid had consoled me.”

This book is Roiphe’s haunting but muddled attempt to come to terms with the mystery of extinction. Her father died, and she will never know what he was going through. Salter, who died last year, knew best: “Don’t dwell on it.”

Complete Article HERE!

The 11 qualities of a good death, according to research

BY Jordan Rosenfeld

The 11 qualities of a good death, according to research

Nearly nine years ago, I received a call from my stepmother summoning me to my grandmother’s house. At 92 years old, my Oma had lost most of her sight and hearing, and with it the joy she took in reading and listening to music. She spent most of her time in a wheelchair because small strokes had left her prone to falling, and she was never comfortable in bed. Now she had told her caregiver that she was “ready to die,” and our family believed she meant it.

I made it to my grandmother in time to spend an entire day at her bedside, along with other members of our family. We told her she was free to go, and she quietly slipped away that night. It was, I thought, a good death. But beyond that experience, I haven’t had much insight into what it would look like to make peace with the end of one’s life.

A recent study published in the American Journal of Geriatric Psychiatry, which gathered data from terminal patients, family members and health care providers, aims to clarify what a good death looks like. The literature review identifies 11 core themes associated with dying well, culled from 36 studies:

  • Having control over the specific dying process
  • Pain-free status
  • Engagement with religion or spirituality
  • Experiencing emotional well-being
  • Having a sense of life completion or legacy
  • Having a choice in treatment preferences
  • Experiencing dignity in the dying process
  • Having family present and saying goodbye
  • Quality of life during the dying process
  • A good relationship with health care providers
  • A miscellaneous “other” category (cultural specifics, having pets nearby, health care costs, etc.)

In laying out the factors that tend to be associated with a peaceful dying process, this research has the potential to help us better prepare for the deaths of our loved ones—and for our own.

Choosing the way we die

Americans don’t like to talk about death. But having tough conversations about end-of-life care well in advance can help dying people cope later on, according to Emily Meier, lead author of the study and a psychologist who worked in palliative care at the University of California San Diego’s Morris Cancer Center. Her research suggests that people who put their wishes in writing and talk to their loved ones about how they want to die can retain some sense of agency in the face of the inevitable, and even find meaning in the dying process.

Natasha Billawala, a writer in Los Angeles, had many conversations with her mother before she passed away from complications of the neurodegenerative disease ALS (amytropic lateral sclerosis) in December 2015. Both of her parents had put their advanced directivesinto writing years before their deaths, noting procedures they did and didn’t want and what kinds of decisions their children could make on their behalf. “When the end came it was immensely helpful to know what she wanted,” Billawala says.

When asked if her mother had a “good death,” according to the UCSD study’s criteria, Billawalla says, “Yes and no. It’s complicated because she didn’t want to go. Because she lost the ability to swallow, the opportunity to make the last decision was taken from her.” Her mother might have been able to make more choices about how she died if her loss of functions had not hastened her demise. And yet Billawalla calls witnessing her mother’s death “a gift,” because “there was so much love and a focus on her that was beautiful, that I can carry with me forever.”

Pain-free status

Dying can take a long time—which sometimes means that patients opt for pain medication or removing life-support systems in order to ease suffering. Billawala’s mother spent her final days on morphine to keep her comfortable. My Oma, too, had opiate pain relief for chronic pain.

Her death wasn’t exactly easy. At the end of her life, her lungs were working hard, her limbs twitching, her eyes rolling behind lids like an active dreamer. But I do think it’s safe to say that she was as comfortable as she could possibly be—far more so than if she’d been rushed to the hospital and hooked up to machines. It’s no surprise that many people, at the end, eschew interventions and simply wish to go in peace.

Emotional well-being

Author and physician Atul Gwande summarizes well-being as “the reasons one wishes to be alive” in his recent book Being Mortal. This may involve simple pleasures like going to the symphony, taking vigorous hikes or reading books He adds: “Whenever serious sickness or injury strikes and your body or mind breaks down … What are the trade-offs you are willing to make and not willing to make?”

Kriss Kevorkian, an expert in grief, death and dying, encourages those she educates to write advance directives with the following question in mind: “What do you want your quality of life to be?”

The hospital setting alone can create anxiety or negative feelings in an ill or dying person, so Kevorkian suggests family members try to create a familiar ambience through music, favorite scents, or conversation, among other options, or consider whether it’s better to bring the dying person home instead. Billawalla says that the most important thing to her mother was to have her children with her at the end. For many dying people, having family around can provide a sense of peace.

Opening up about death and dying

People who openly talk about death when they are in good health have a greater chance of facing their own deaths with equanimity. To that end, Meier is a fan of death cafés, which have sprung up around the nation. These informal discussion groups aim to help people get more comfortable talking about dying, normalizing such discussions over tea or cake. It’s a platform where people can chat about everything from the afterlife (or lack thereof) to cremation to mourning rituals.

Doctors and nurses must also confront their own resistance to openly discussing death, according to Dilip Jeste, a coauthor of the study and pediatric psychiatrist with the University of California San Diego Stein Institute for Research on Aging. “As physicians we are taught to think about how to prolong life,” he says. That’s why death becomes [seen as] a failure on our part.” While doctors overwhelmingly believe in the importance of end-of-life conversations, a recent US poll found that nearly half (46%) of doctors and specialists feel unsure about how to broach the subject with their own patients. Perhaps, in coming to a better understanding of what a good death looks like, both doctors and laypeople will be better prepared to help people through this final, natural transition.

Complete Article HERE!

I am sorry I didn’t beat cancer

By Uzma

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Yep, sorry, my apologies, with a diagnosis of metastasis four months ago , I didn’t beat cancer.

Every one said, “You are going to beat it”, some said, “If anyone can, you can!!”. They cheered me on as I endured one treatment after another and I kept fighting “like a girl”. I was told I will kick cancer’s ass and will show cancer who is the boss. I rode the wave of positivity and determination. I believed that I will beat it too. I thrived on the fantasy of the cancer submitting to my will and strength.

Songs, inspirational quotes, memes, greeting cards and stories, all led to me to the one end point, “beating cancer”. Being very much a type A personality, I accepted the challenge, I said to myself “I will beat cancer”. Except for one open book exam, I have hardly failed at something in life. So why not this!

However, two and a half years after my first breast cancer diagnosis, I was diagnosed with metastatic disease in the lymph nodes in my chest and some spots in my liver. Shocked and traumatized only begins to define of what I experienced. It was a very hard and exhausting process to come to acceptance.

Broken and beaten, it felt like a failure as if I let down every one who thought I would “knock the shit out of cancer”. I was no longer the example of how stage 3 can be a success story and inspiration.  As a doctor I understood that it was nothing that I did, to bring back my cancer. But I still felt a sense of shame.

Statistics indicate that 30 percent of those are diagnosed with early stage cancer will develop metastasis. I had just held on to 70 percent much more dearly. Medical science currently doesn’t know the exact mechanism through which cancer cells find home in other organs of the body.

The time had come to let go of being a “survivor” and on to a “thriver” or a “lifer”, the terms preferred by metastatic community since we ultimately end up not surviving the disease.

When I was diagnosed the first time, one of the things that helped me very much was supporting others with breast cancer. I did this so their journey could be easier and smoother through the knowledge and experience I had. I wrote blogs and participated actively in online groups.

Since the recurrence happened, I often wondered if I scared other survivors, if they looked at me and worried about getting metastatic cancer and sometime I even wondered if they actively avoided me. I, the face of incurable metastatic cancer, everything that everyone  diagnosed with breast cancer is worried about. The fear of dying of this terminal illness that has no cure. I have no cure.

Having metastatic illness is an emotionally isolating experience, and a lot of women I know tend to withdraw from others after metastasis because it is hard for others to understand our subjective experience…the experience of living life with an incurable, relentless illness with never-ending treatments. It is so overwhelming for others; they don’t want to hear much as it reactivates their own fears of mortality. I have experienced that from some of the survivor friends who want to keep the distance from me but I understand that they want to contain their anxieties of ending in my shoes. I didn’t want to horrify others.

I often wondered what people think when they look at me and if and how sorry they feel for me. I imagine something to the effect of … “Oh this poor young woman with young children who has this illness that has no cure”.

Me and my metastatic cancer.

I remembered when I was newly diagnosed, the word “metastasis” used to send chills up my spine. I used to dread my facebook feed on Mondays, which are  #metsmonday. I did not want to be reminded that my cancer could metastasize, although at stage 3 with high grade cancer cells, I knew inside that the odds of it happening are very high.

One of my stage 4 friends has lived on with bone metastasis for 11 years, she gave me hope but I still would at times try and block her out of my mind, for my own sanity, so I could worry less about me. It sounds selfish but the fear of recurrence is haunting.

I also wanted denial so bad…deny that it could happen to me. I convinced myself that I am doing everything possible to reduce the chances of my recurrence. From good diet to exercise to supplements and yoga, lowering stress and getting enough sleep and all the medications and treatments, I did all possible to lower the chance of cancer taking root within me again.

But as time went on, I also worked hard on accepting what having had cancer meant. It meant accepting life that you have no control over…Life which transitions between sweet fantasies and harsh realities. I got used to those ups and downs. I saw my friends with stage four cancers, kick each day in the butt and beat cancer on a daily basis. My denial softened gradually and I thought, “if it (metastasis )happens I will be ok” . I celebrated every clean scan and a good oncologist visit but the fear of metastasis lingered.

And then it happened. I got another, “I am so sorry “ call from my doctor and I was devastated. Besides coping with my illness, I was sad that I lost my “credibility” as a cancer warrior who had “beaten” cancer.  I was not longer a “success story”.

During all of the angst, I received this message from a fellow survivor whom I got to “know” via Facebook.

It said,

“Until I “met” you, I could not think of stage 4.

I’d panic, hyperventilate

Start to decompensate.

Then I met you.

You are showing me, with grace, passion and humor how this can be done.

You are something of a role model to me.

Doing this stage 4 before I do, if I do.

I’m not so afraid anymore. I have someone doing this ahead of me and I know how to do it.

If I ever get metastasis, I will have someone to emulate….and I will think of you the whole time.

Forgive me if this bugs you or hurts you? I just admire you so much and thank you and God for putting me in my life, but I am also so very, very sorry for your cancer.”

And then I realized I really don’t need to “beat cancer”; I have to however beat life at its game, one day at a time.

I am sorry I didn’t beat cancer but now it really doesn’t matter because I am busy kicking life and showing others how to reconcile with stage 4 breast cancer.

Complete Article HERE!

Dying for beginners: Cory Taylor on facing death with honesty

by Richard Fidler

CORY TAYLOR AT HER HOME IN BRISBANE IN JUNE 2016.
CORY TAYLOR AT HER HOME IN BRISBANE IN JUNE 2016.

Award-winning Australian writer Cory Taylor spent the last years of her life fascinated with her own mortality, writing a memoir that she hoped would trigger more open and honest conversations about death. In her last weeks, she shared some of her insights in a bedside interview with Richard Fidler.

Cory Taylor died on Tuesday, without pain, and with her family all around her. She had just turned 61.

For a decade, she had lived with the certainty of her death from melanoma-related brain cancer.002

Her final project, Dying: A Memoir, was written earlier this year in the space of just a few weeks.

Julian Barnes wrote after he read Dying, ‘We should all hope for as vivid a looking-back, and as cogent a looking-forward, when we reach the end ourselves.’

Her publisher, Michael Heyward, announced plans to publish the book around the world in the coming months.

Cory’s writing career started with screenwriting, moved into children’s books, and then novels for adults.

Her first novel, Me and Mr Booker, won the Commonwealth Writers Prize (Pacific Region) and her second, My Beautiful Enemy, was shortlisted for the Miles Franklin Literary Award.

Just three weeks ago, Richard Fidler spoke to Cory at her home in Brisbane. Here are some highlights of their conversation about her life, and her feelings about her own death.

On life in her last weeks

‘I move from my bed in my bedroom, to my sofa here in the living room, and basically I stay here and I’m fed delectables all day and that’s about it.

‘Reading, I find pretty exhausting, which is sad. Even watching stuff on TV taxes you a lot. But I miss reading, so I do force myself to read.

‘One of the things I do is dream a lot about life. Not dream as in sleep dreaming, but day dreaming. It’s not as if I’m gathering memories but I still am very steeped in memory.

On being a ‘beginner’ at dying

‘I’ve never seen anybody die, so it’s not something I know anything about.

‘I think we should all study it. I think we should all spend time with people when they’re dying.

‘Basically, it’s all hidden from us … we’re so ignorant about how does it happen actually, physically, and then what do we read from that?

‘I wish I’d known a lot more about it before now.’

On the idea of assisted dying

‘I’ve always felt that I have controlled my destiny, pretty much. That may be a compete delusion—well, obviously it is, because I’m dying and I didn’t plan that.

‘But it’s the lack of control when you’re dying that is so terrifying.

‘Even to think that you have the possibility to control the circumstances, to put yourself out of your own misery, it just renews that sense you do have some control over what’s going to happen to you.

‘And that is a real comfort.’

Cory Taylor at her home in Brisbane.
Cory Taylor at her home in Brisbane.

On whether to think about dying

‘I don’t think you should think daily on it, but I do think it’s worth having in the back of your mind, in terms of the kinds of conversations you want to have with your family … so that they have a sense that you are not there forever.

‘That means that you value certain things now and you want to enjoy certain things now and there are a whole lot of things you don’t want to do and you don’t want to waste time on, because you’re aware that it’s all finite and it can be over faster than you think.’

On cancer

‘The last thing I wanted was to write a morbid analysis of my cancer treatment or my “battle” with this disease.

‘The war metaphor doesn’t really work for me at all. It is a “coming into” dying, as if that’s a natural flourishing in a way.

‘It is a momentous thing. It’s the most important thing that’s going to happen to you after your birth.

‘The complete randomness of the whole thing … that’s not what saddens me about dying. The ultimate randomness is death, isn’t it?

‘Despite all the randomness and precariousness of it all, it’s still an enormous gift and an enormous blessing, so why would you begrudge any of it? It doesn’t really matter in the end.’

On consoling loved ones

‘People have been to me surprisingly emotional about me dying, when I don’t feel as sad as they are. You want to protect them from that and say: “It is alright.”

‘I think my book has helped my friends to realise I am telling the truth. I am OK.

‘I have managed to do the things I wanted to do, and I’m not going out full of regrets or grudges, or anything like that.’

On her funeral plans

‘I’m a bit hazy on my funeral plans. I had a book launch (in Brisbane) and I was just there in the ether, talking on Skype. And I could see the audience, and it was a bit riotous, and there was lots of laughter, and lots of tears.

‘A lot of people who went called me later and said, “Oh Cory it was fabulous, it was like being at your funeral.”

‘I thought, “Oh that’s good. I’ve done it now. I don’t have to do it again!”

‘So I’d probably want a repeat of the launch, which is just a room full of friends, and lots of grog and food, and people saying lovely things about you. That’d do.’

Complete Article HERE!

At the End of Life, What Would Doctors Do?

By IRA BYOCK, M.D.

At the End of Life

Americans have long been chided as the only people on earth who believe death is optional. But the quip is losing its premise. A recent profusion of personal narratives, best-selling books and social entrepreneurs’ projects suggest that, as a culture, we are finally starting to come to terms with our mortality. Nationally, the Conversation Project is engaging people to discuss their wishes for end-of-life care. Death Cafes and Death Over Dinner events are popping up across the country, reflecting an appetite for exploring these matters. So too, the Dinner Party and the Kitchen Widow are using meals as a communal space to explore life after loss.

Admittedly, contemplating mortality is not (yet) a national strong suit. That’s why these cultural stirrings are so significant. At a minimum, our heightened awareness and willingness to talk about illness, dying, caregiving and grieving will lead to much better end-of-life care. However, the impact on American culture needn’t stop there. Like individuals who grow wiser with age, collectively, in turning toward death, we stand to learn a lot about living.

Doctors can be valuable guides in this process. In matters of illness, people are fascinated by the question, what would doctors do? Consider the social phenomenon of Dr. Ken Murray’s online essay, “How Doctors Die.” Dr. Murray wrote that doctors he knew tended to die differently than most people, often eschewing the same late-stage treatments they prescribed for patients. The article went viral, being read by millions, and reprinted in multiple languages in magazines, newspapers and websites across the globe.

Dr. Murray’s observation even engendered studies of doctors’ preferences for care near the end of life. So far, results are mixed. In a Stanford study, 88 percent of responding physicians said they would avoid invasive procedures and life-prolonging machines. But a newly released comparative study of Medicare recipients, as well as a longitudinal study and separate analysis of Medicare datapublished in January, suggest that the actual differences between end-of-life treatments that doctors and nondoctors receive are slight. Perhaps like nearly everyone else, when life is fleeting, physicians find it difficult to follow their previous wishes to avoid aggressive life-prolonging treatments.

For what it’s worth, the terminally ill colleagues I’ve known, including those I’ve been privileged to care for, have usually been willing to use medical treatments aplenty as long as life was worth living, and took great pains to avoid medicalizing their waning days. In any event, the public’s interest in the medical treatments that doctors choose must not be allowed to reinforce our culture’s tendency to see dying solely through medical lenses. More to the point is the question, how do dying doctors live?

What dying doctors do with their time and limited energy, and what they say, are deeply personal, sometimes raw and often tender. Like everyone else, doctors experience pain and suffering – yet many speak of a deepening moment-to-moment sense of life and connection to the people who matter most.

Listen to a few.

Dr. Jane Poulson lost her sight to diabetes while still in medical school. After years of successful internal medicine practice, Dr. Poulson developed inflammatory breast cancer and knew it would claim her life. Writing in the Canadian Medical Journal she said:

In a paradoxical way, I think I can say that I feel more alive now than ever before in my life … When you presume to have infinity before you the value of each person, each relationship, all knowledge you possess is diluted.
I have found my Holy Grail: it is surrounding myself with my dear friends and family and enjoying sharing my fragile and precious time with them as I have never done before. I wonder wistfully why it took a disaster of such proportions before I could see so clearly what was truly important and uniquely mine.

About a year after being given a diagnosis of incurable esophageal cancer, Dr. Bill Bartholome, a pediatrician and ethicist at the University of Kansas, wrote:

I like the person I am now more than I have ever liked myself before. There is a kind of spontaneity and joyfulness in my life that I had rarely known before. I am free of the tyranny of all the things that need to get done. I realize now more than ever before that I exist in a ‘web’ of relationships that support and nourish me, that clinging to each other here ‘against the dark beyond’ is what makes us human … I have come to know more about what it means to receive and give love unconditionally.

Dr. Bartholome referred to this period before his death as “a gift.”

It has given me the opportunity of tying up the ‘loose ends’ that all our lives have. I have been provided the opportunity of reconnecting with those who have taught me, who have shared their lives with me, who have ‘touched’ my life. I have been able … to apologize for past wrongs, to seek forgiveness for past failings.

A healthy defiance is often palpable within the personal decisions of doctors who are living in the growing shadow of death. My friends Herbert Maurer and Letha Mills, long-married oncologists, boldly renewed their vows before a crowd of family and friends during the months Herb was dying of cancer. In “When Breath Becomes Air,” the neurosurgeon Dr. Paul Kalanithi relates the decision he and his wife, the internist Dr. Lucy Kalanithi, made to have a child, while knowing full well that he was unlikely to see their daughter grow up. Such affirmations of couplehood in the face of death are not denial; but rather insubordination, eyes-wide-open commitments to living fully despite the force majeure.

Gratitude also commonly emerges in the experiences of dying clinicians. In one of our last email exchanges, my friend, the clinical psychologist Peter Rodis, wrote:

The shock of knowing I’ll die has passed. And the sorrow of it comes only at moments. Mostly, deep underneath, there is quiet, joyous anticipation and curiosity; gratitude for the days that remain; love all around. I am fortunate.

The neurologist Dr. Oliver Sacks concluded his essay “My Own Life” in exaltation.

Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.

These experiences are like dabs of paint on an Impressionist’s canvas. Taking in this contemporary ars morendi we can appreciate how dying and well-being can coexist. For all the sadness and suffering that dying entails, our human potential for love, gratitude and joy persists.

How fitting would it be for a corrective to the medicalization of dying to come from the medical profession itself? The general public’s interest in what doctors do can teach all of us about living fully for whatever time we each have.

Complete Article HERE!