05/20/17

Pathologist Carla Valentine Will Teach You How to Die Fearlessly

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“The people who think about mortality tend to have the highest happiness rate.”

By Sarah Sloat

Ambitious technocrats may predict a deathless future, but as the world stands now, we’re all going to die. This leaves us humans with the same two options we’ve had since we emerged from the evolutionary mire: Fear the final shuffling of our mortal coils, or embrace the inevitability that we’ll all be one with the dirt.

Fortunately, there are people out there who can help ease your mind about the whole “one day you’ll be dead” thing. One of those people is Carla Valentine, whose job as an anatomical pathologist, technical curator at Barts Pathology Museum, and author of The Chick and the Dead, has more than prepared her to come face to face with the inevitable end. In her book, which will be released in the United States in June, she weaves together corpse science and her intimate involvement with the “death industry” with the vital lesson about dying she’s learned over the years: Everyone wants to learn more about death whether they admit it to themselves or not, and accepting that education is the best preparation for their final days.

Valentine, whose book will be released in the United States in June, recently spoke to Inverse about the CSI effect, the future of “soul midwives,” and urban legends that just won’t go to the grave.

Carla Valentine.

>Why was now the right time to write this book?
There are two reasons, really. There is definitely more of a desire at the moment for people to speak about death and learn more about it. That’s been on an upward trajectory. That just happened to coincide with when I left my career as a full-time pathology technician and I began to work at the museum, which gave me more free time to actually start to write.

What do you think has driven that increased interest in talking about death and learning about it?
When I first studied forensic science, which was 15 years ago, there were barely any courses. Those courses began to increase with what we call the “CSI effect”. That’s an actual academic term now for the interest in death and autopsies that has emerged from the increase in books and TV shows on the topic.

I think another issue is just the cost of funerals, like many things, is rising. People want to be a bit more informed and demystify the process around death so that they can plan properly and just dispel a lot of the myths before the time comes. There have always been a lot of myths around autopsies and how we conduct them. I think people just want to know the truth and it’s a good time for it.

What do you think people gain when from learning about what happens to their body after they die?
Personally, I think that when people face this idea of their mortality, the reality of it, and the reality of what may happen to their family members, for example, they tend to live a better life. They tend to understand how quickly it can be taken away. They can appreciate their own mortality and their own health. That was always what I felt and that’s been backed up by psychological studies, as well, which I reference in the book. The people who think about mortality tend to have the highest happiness rate. I think it’s because it demystifies it. People say that you’re afraid of the unknown. Sometimes it’s better to face the reality of it. Then it’s not so scary anymore.

Fracture of a mandible at the Pathology Museum.

Do you get consistently the same sort of questions from people when they learn about your job?
I get consistently the same sort of questions and I get consistently told the same myths. Those absolutely drive me insane. I took as much opportunity as I could to answer all of the questions that I always get asked in the book. A lot of these myths have been doing the rounds since I was a child. For example, I was at the hairdresser’s yesterday, and the girl in the chair next to me overheard that we were talking about my job, and she said, “It’s true, isn’t it, that the fingernails grow and the hair grows after death?” I was like, “No it’s not like that.” I’ve heard the same things for 20 years.

What else do people get wrong about death?
People also think the deceased sit upright because of their gases, which is not true at all. Some deceased people are possibly in a state of rigor mortis, where they’ve passed away in a chair and so that means for a while they’ll still be in a bent-over position. They’ll look slightly like they’re sitting up when they’re on the slab. But they don’t sit up because of the gases. There are the odd groans or burps or farts. That is true.

The most annoying urban legend is the one where someone tells me, “A friend of mine knows someone who got a rash and when she went to the doctors she found out that it can only be caught from a corpse.” Basically insinuating that the guy that she’d had sex with or whatever has had sex with a corpse. That always drives me insane because there’s nothing on a deceased individual that isn’t on a live individual. We have the flora and fauna. There is no such thing as a parasite or a fungus that you can get from the dead.

It just goes to show how fascinated people are by those subjects. I’m doing my MA on the relationship between the sexualized gaze and anatomical displays. When I blog about sex and death and people go, “Really?” I think, look, you’re all interested in sex and death, just look at this one urban legend that’s nearly outlived me. Clearly, people are far more interested in sex and death than they’d like to let on.

A broken cervical spine.

What is it about that intersection that people keep on coming back to?
They’ve had similar periods in time where they’ve been sort of considered taboos. But the simple fact is sex is what begins our lives and death is what ends it. They’re two sides of the same coin. They’ve always been connected to each other psychoanalytically because everything you do, according to Freud, you do with either the death drive, the morbido, or a life drive, which is libido.

Inside Barts Pathology Museum.

Are there any new modern trends you’ve noticed, when it comes to what people want immediately before and after they die?
There are definitely newer trends towards much more environmentally friendly funerals. A lot of people are moving away from the traditional funeral, and opting for a green burial. That means that they wouldn’t be embalmed. Embalming was never as big over in the United Kingdom as it is in the U.S. anyway, but it’s still definitely dwindling. Natural burials where people are placed into wicker, cardboard coffins, or linen and buried into an actual burial ground. There’s definitely an increase in people who want that, while we never really would hear of that request a few years ago.

And then there’s death doulas and end of life doulas. They’re just like midwives, but for death. I met one the other night and he actually called himself a “soul midwife.” Death doulas are usually brought in when the person is in hospice. It can also be as soon as a person discovers that they’re terminally ill. In the same way that a midwife is there for the mother as she’s becoming dilated and then she delivers the baby, the doula helps the person through the process of death. It’s a similar process, I suppose, just the other way around.

Complete Article HERE!

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05/19/17

Do-Not-Hospitalize Orders Reduce Resident Transfers, Says New Study

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By Patrick Connole

A fresh look at how Do-Not-Hospitalize (DNH) orders affect the movement of skilled nursing care residents shows those residents with such directives experienced significantly fewer transfers to hospitals or emergency departments (EDs). Report authors said long term and post-acute care providers may see the information as evidence that considering DNH orders in end-of-life care plans could benefit residents and the nursing center in which they live.

“Residents with DNH orders had significantly fewer transfers. This suggests that residents’ end-of-life care decisions were respected and honored,” the authors said. “Efforts should be made to encourage nursing home residents to complete DNH orders to promote integration of the resident’s values and goals in guiding care provision toward the end of life.”

Results of the new study are in the May issue of The Journal of Post-Acute and Long-Term Care Medicine (JAMDA) in an article titled, “Are Hospital/ED Transfers Less Likely Among Nursing Home Residents with Do-Not-Hospitalize Orders?” JAMDA is the official journal of AMDA – The Society for Post-Acute and Long-Term Care Medicine.

The design of the study saw researchers examine Minimum Data Set 2.0 information from more than 43,000 New York state skilled nursing care residents. Of that number, 61 percent of residents had do-not-resuscitate orders, 12 percent had feeding restrictions, and 6 percent had DNH orders.

“Residents with DNH orders had significantly fewer hospital stays (3.0 percent vs 6.8 percent) and ED visits (2.8 percent vs 3.6 percent) in their last 90 days than those without DNH orders,” the report said. “Dementia residents with DNH orders had significantly fewer hospital stays (2.7 percent vs 6.3 percent) but not ED visits (2.8 percent vs 3.5 percent) than those without DNH orders.”

After adjusting for statistical variables, researchers said the results show that for residents without DNH orders, the odds of being transferred to a hospital was significantly higher than those with DNH orders.

One of the report’s authors, Taeko Nakashima, PhD, visiting assistant professor, State University of New York (SUNY) at Albany and adjunct assistant professor at Rutgers University, stresses that preparing DNH orders requires collaborative efforts and thorough discussion among the residents, health care proxy, and the attending physician about the goals of the resident and the resident’s prognosis and treatment options.

“Ethical end-of-life care in nursing homes must respect the resident’s autonomy and advance directive,” she says.

Complete Article HERE!

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05/18/17

New nationwide study indicates patients are often prescribed potentially futile drugs in their final days

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Nearly half of older adults in Sweden take 10 or more medications in their last months of life, according to a new study reported in The American Journal of Medicine

Older adults often receive drugs of questionable benefit during their last months of life, according to the first study conducted on the burden of end-of-life medications across an entire population. The authors advocate for clinical guidelines to support physicians when they face the decision to continue or discontinue medications near the end of life. Their findings are published in The American Journal of Medicine.

The simultaneous use of multiple medications has become commonplace among older adults. In high-income countries, it has previously been estimated that 25% to 40% of people aged 65 years or older are prescribed at least five medications. This practice is known as “polypharmacy,” and can lead to drug-drug interactions and serious adverse effects.

In the context of end-of-life care, polypharmacy also raises important ethical questions about the potential futility of treatments close to death.

“People with life-limiting illness often receive medications whose benefit is unlikely to be achieved within their remaining lifespan,” writes lead author Lucas Morin, of the Aging Research Center at Karolinska Institutet in Stockholm, Sweden. “However, previous studies have been conducted in selected samples of individuals. Future research and clinical guidelines need to be informed by findings that are generalizable beyond a specific illness or care setting.”

The authors identified over half a million adults over 65 years of age who died in Sweden between 2007 and 2013, and reconstructed their drug prescription history for each of the last 12 months of life through the Swedish Prescribed Drug Register. The characteristics of study participants at time of death were assessed through record linkage with the National Patient Register, the Social Services Register, and the Swedish Education Register. Of note, over-the-counter drugs were not taken into account in this investigation.

The study resulted in two main findings:

First, the burden of medications increases as death approaches. The proportion of older adults exposed to at least ten different prescription drugs rose from 30% to 47% over the course of the last year before death. Older adults who died from cancer had the largest increase in the number of drugs. Individuals living in institutions were found to receive a greater number of medications than those living in the community, but the number of drugs increased more slowly for those living in an institution.

Second, the researchers found that polypharmacy near the end of life is fueled not only by drugs prescribed for the purpose of symptom management (e.g. analgesics), but also by the frequent continuation of long-term preventive treatments and disease-targeted drugs. For instance, during their last month of life, a large proportion of older adults used platelet antiaggregants (45%), beta-blockers (41%), ACE inhibitors (21%), vasodilators (17%), statins (16%), calcium channel blockers (15%), or potassium-sparing agents (12%).

“The clinical benefit of drugs aiming at preventing cardiovascular diseases during the final month of life is at the very least questionable. Physicians should consider discontinuing drugs that may be effective and otherwise appropriate, but whose potential harms outweigh the benefits that patients can reasonably expect before death occurs.” However, the authors noted that “the process of de-prescribing requires timely dialogue between the patient, family, and physician, and close monitoring of symptoms. It is also essential that patients and their relatives receive clear information about their options in terms of palliative care in order to counter the feeling of abandonment that they may experience when treatments are withdrawn.”

The authors call for the development of clinical guidelines to support physicians in their effort to reduce potentially futile drug treatments near the end of life.

Complete Article HERE!

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05/17/17

Plan for your death; be wise like Wally was

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Linda Norlander is one of six reader columnists for The News Tribune.

We sat at the kitchen table with coffee and the forms. My father-in-law, Wally, had summoned me to help him fill out one of those “living will things.” We talked about what was important to him, now that he was in his 80s.

He was clear. “I’ve had a good life. I’ve never buried a child or a grandchild. When it’s time for me to go, I don’t want one of those young doctors trying to save me.” His main wish for health care at the end of his life was to be pain-free.

However, Wally’s gift to his family was not just the paper we filled out that day. His larger gift was the conversation he had many times with the family about his wishes.

When the time came that he was unable to speak for himself, and the doctors wanted to place a feeding tube to prolong his life, we were all on the same page. As my mother-in-law said, “Wally wouldn’t want that.”

With the support of hospice, he was able to say good-bye to his children and grandchildren and dispense a few words of wisdom. I remember that he advised our son with a chuckle, “You go to college. That’s good. But someday you need to get a job.” He died peacefully with all of us at the bedside.

When I meet people and tell them that I’ve worked in hospice and end-of-life care for many years, they often open up with their own stories. Unfortunately, too many of them do not end with, “I was able to carry out Mom’s wishes.” Instead, they are descriptions of having to make harrowing decisions for a loved one in the moment of crisis. I think about the son whose mother had a major stroke and was in a coma. He was told by the neurosurgeon that they would have to do surgery or she would die. What child wants to say, “No, let Mom die.”

They did the surgery and she died six weeks later, among the tubes and medical apparatus of an intensive care unit. To this day, he second-guesses whether he made the right decision. “Her last weeks of life were horrific.” When I’d asked him if he had ever talked with her about what she might want, he’d shrugged and said, “It never came up.”

We live in an era of incredible medical advances. We can replace kidneys, hearts, knees and hips. We have pacemakers, effective heart medications and all sorts of treatments for failing systems. What we usually don’t have are honest conversations about the treatments and what they might mean for the quality of life. To the son whose mother died in the intensive care unit, no one said, “If your mother survives she will likely be bedridden and comatose for the rest of her life.”

I am a proponent of doing four things regarding end-of-life care. First, sit down at the kitchen table with your family and have an honest conversation about what quality would mean for you if you weren’t able to speak for yourself. Second, name your health care power of attorney — the person who would speak for you — and give them your blessing that you will trust their decisions. Third, fill out an advance directive (the living will.) And fourth, do this now rather than waiting for a health care crisis.

I know, from years of working in the medical system, that in the moment when difficult decisions have to be made, very few doctors will seek out the health care directive document and say, “This is what your loved one wanted.” More likely, they will look at the family members and ask, “What do you want to do?”

In fact, when it came time to make decisions for Wally, we couldn’t find the health care directive. But the family knew what he wanted and we provided a united front regarding his wishes. Two weeks after he died, we finally found the form — in my mother-in-law’s underwear drawer. By then, though, Wally had already given us his gift.

Complete Article HERE!

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05/15/17

Why Your Fear Of Dying Alone Means You’re Not Really Living

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By Kendra Syrdal

Everywhere around me even in modern day 2017, it seems like as a single person I’m confronted with the same message

“Here’s how to find the real love of your life!” Some old guy in a tuxedo exclaims at me from an eHarmony commercial.

“You’re totally like Carrie Bradshaw,” my friends say over drinks when I talk about my job and how I’ve gone out on dates with a few different guys this month. “Now you just need your Big.”

We just don’t want to be alone the countless submissions I read every day proclaim in their honest, heartsick words and in their desperate and painfully lonely headlines.

I’m afraid of a lot of things. I hate driving and am always convinced a semi-truck will run me off of the interstate and send me plummeting to my death. I love paddle boarding but have a weird anxiety about going too far out where the water is a certain level of deep because realistically – who knows what’s down there. The idea of my dog dying when I’m not home makes my eyes start watering just typing it out.

I’m afraid of a lot of things, but dying alone isn’t one of them.

One of my best friends told me a story about how her dad always used to tell her that no matter what, she had to like herself because she was the only person who ever really would ALWAYS be there. And that’s the truth. Some people would say that’s cynical and glass-half-empty, but I say it’s simply honest.

Think about it. Even if you do fall in love, madly in love, the kind of love that people write sonnets about and songs about and paint all over a building as a mural – eventually you’re going to die. And even if that person has been there day in and day out, holding your hand and kissing you despite your morning breath, the only person who you’ll have in those final moments is yourself. All you really have, is you.

So you’d better like you.

I think what we’re really not saying when we say we’re afraid of dying alone is that we’re really not afraid of the alone part, we’re afraid of only having ourselves to hold onto. We’re afraid that somehow, we won’t measure up. We won’t be enough. That somehow, we’re an incomplete puzzle without some else’s edge pieces.

When we say we’re afraid of dying alone we’re really saying we’re afraid that we’ll never be happy with just ourselves, and that we need someone else to dictate that level of completeness to our lives.

But you know what? The little secret that no one wants you to figure out – that the man in the suit hopes you never realize, and anyone writing a “Here Is How You Find The Love Of Your Life And Never Eat Alone Again” book hopes you don’t come to terms with?

A fear of dying alone is really just a fear of not living a life you love. A life you’re excited about. A life that makes you feel enough.

And they never want you to know that crushing that fear is simple. All you have to do is refuse to let it in.

So when you’re worried about eating alone, grab a book that swallows you with its characters and its story and go treat yourself to some Alfredo and wine and give it no second thoughts. If you’re scared of your life being empty, make friends with people who never cease to make you smile and challenge you in the ways you need. Fill your days with a job you love, with travels that blow your mind, and create a life that bears no need for another person other than yourself.

That way, if someone comes alone, they’re just and enhancement, not a requirement.

Your fear of dying alone isn’t sign of being an incomplete or unlovable person — it’s simply a sign that you just need to love yourself enough to stop being so afraid.

Complete Article HERE!

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05/14/17

We’re Bad at Death. Can We Talk?

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A dialysis center in Paterson, N.J. Illnesses like renal failure often prove terminal, yet their uncertain progression can make it hard for patients and their families to start the conversation about palliative care and hospice.

By

Her last conversation should not have been with me.

I’d just arrived for the night shift in the I.C.U. when her breathing quickened. I didn’t know much about the patient, and the little I did know wasn’t good: She had cancer. Her lungs were filled with fluid. As her breathing deteriorated and her oxygen levels plunged, I searched the chart for her wishes in an emergency. Nothing.

I explained to her how rapidly her condition had worsened and asked if she’d discussed intubation and mechanical ventilation. She shook her head; she didn’t think it would get so bad so fast. Together we called her husband, who had just left for the evening, but there was no answer.

“If we do it, when will I…” she paused. “When will I wake up?”

I hesitated. It was as likely as not that she wouldn’t. I explained that we never leave patients intubated longer than necessary, but when people were as sick as she was it was impossible to know when — or even if — they would be extubated.

“O.K.,” she said. “Do it.”

There are, no doubt, differing opinions on what constitutes a good death. But this, inarguably, was not one.

For years the medical profession has largely fumbled the question of what we should do when there’s nothing more we can do. A new wave of research sheds light on what patients want at the end of life, and who is — or isn’t — getting it.

Despite growing recognition that more care isn’t necessarily better care, particularly at the end of life, many Americans still receive an enormous dose of medicine in their final days. On average, patients make 29 visits to the doctor’s office in their last six months.

In their last month alone, half of Medicare patients go to an emergency department, one-third are admitted to an I.C.U., and one-fifth will have surgery — even though 80 percent of patients say they hope to avoid hospitalization and intensive care at the end of life.

Medicare spending for patients in the last year of life is six times what it is for other patients, and accounts for a quarter of the total Medicare budget — a proportion that has remained essentially unchanged for the past three decades.

It’s not clear all that care improves how long or how well people live. Patients receiving aggressive medical care at the end of life don’t seem to live any longer, and some work suggests a less aggressive approach buys more time. Despite a popular misconception, doctors don’t die much differently: Physicians use hospice care and die in hospitals at rates similar to everyone else.

Two interventions have consistently been shown to help patients live their final days in accordance with their wishes: earlier conversations about their goals and greater use of palliative care services, which emphasize symptom control and greater psychological and spiritual well-being — and which recognize that longer survival is only part of what patients want.

Patients who engage in advance care planning are less likely to die in the hospital or to receive futile intensive care. Family members have fewer concerns and experience less emotional trauma if they have the opportunity to talk about their loved one’s wishes. And earlier access to palliative care has consistently been linked to fewer symptoms, less distress, better quality of life — and sometimes longer lives.

We’ve made significant progress in recent years: The availability of palliative care services has increased 150 percent over the past decade, and compared with patients in other developed countries, older Americans with cancer are now the least likely to die in a hospital (22 percent versus up to 51 percent). But not everyone has benefited from the palliative care movement: Large disparities remain by geography, race and type of illness.

Ninety percent of hospitals with more than 300 beds now have a palliative care program, but only 56 percent of smaller hospitals do. Patients treated at for-profit and public safety net hospitals (known for taking in those who have no insurance) are much less likely than those in nonprofit hospitals to have access to palliative care.

Complete Article HERE!

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05/13/17

Doctors need to be more honest with families facing critical care choices

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by Jazz Shaw

This is something of a sensitive topic and though we’ve tackled similar ones before, these stories always give me pause. At issue is a frankly heart wrenching story in the Washington Post from last week by Doctor Yvette Youssef. When she was younger, just entering medical school herself, her mother fell terribly ill, prompting a painful discussion among the family. What followed was a brutal journey through the medical system where it became clear that her mother was dying, but the medical team at the hospital never came out and told the family that until her life was just about ended.

Sometimes it feels like the great unspoken secret between doctors and nurses. The words that we dare not utter to patients and families. Perhaps it is our hope that we’re wrong. Perhaps we dread providing unwanted news. Perhaps we don’t want to face reality or extinguish our patients’ hope.

As a daughter, I felt that sense of sadness and dread, waiting to hear the news that would not be told. It was September 1989, and I was only 20 years old and just beginning my first year of medical school. It was less than a week from my first exam when my mother developed intractable nausea and vomiting. After several days of suffering at home, she decided it was time to go to the hospital.

I distinctly remember her sitting at the dining room table and saying goodbye to each of her seven children, starting with the youngest daughter, who had just started kindergarten, and finishing with me, the eldest, who had just started medical school.

Dr. Youssef was initially in denial, even growing angry with her mother and insisting that with a bit of treatment she would be on the mend and back home again. Her doctors actually encouraged that thinking for quite some time, but when it became obvious to everyone that her mother had known the truth from the beginning she was left with many questions which haunted her for years. What if they had been more honest? Would they have put her mother through all those additional, painful procedures just to wring out a few more weeks of life, all of which was spent essentially in hospice conditions?

This story reminded me of some of the previous research I’d done on the subject. One of the most important essays I’ve ever found on the topic dates back to 2011 and was written by Dr. Ken Murray. It’s called “How Doctors Die” and I’ve referenced it here in the past. His story begins with the tale of an orthopedist who he only refers to as “Charlie” who was diagnosed with pancreatic cancer. The story of how Charlie’s life ended was far, far different from what happened to Dr. Youssef’s mother.

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds–from 5 percent to 15 percent–albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.

As Murray points out, Charlie’s story isn’t unusual at all… at least among doctors. He knew he was dying and his colleagues who were caring for him knew it too. He could have undergone all of the chemo and radiation and all the rest and possibly squeezed out a few more months, but instead he had his colleague load him up with painkillers and went home to get as much out of his remaining days as he could.

But for most of us who are not inside the profession, that’s not an option which is discussed unless you demand it. Doctors immediately turn to the long, painful and frequently bankrupting procedures described above, allowing the family to think that just maybe their loved one will pull through in the end, even if the medical team knows that it would literally take a miracle.

And if a miracle is coming, shouldn’t they allow God to handle the heavy lifting in His own time?

This doesn’t sound like the sort of thing that could be easily addressed through government regulation even if you wanted to go that route. Perhaps, as Dr. Youssef suggests, the doctors are afraid of being sued. Or maybe they really don’t like giving bad news. But no matter the reason, it’s more of a cruelty than a kindness to the families to not at least tell them the truth and prepare them for all possible scenarios. I’m guessing that the best method to fix this is through pressure coming from the consumer end of the equation. Patients need to be more direct with their doctors, demand blunt answers no matter how painful they may be and similarly call for an honest range of options. Sometimes being at home with powerful painkillers is better than living in a hospital ward getting radiation for weeks on end if it’s not going to do more than allow you to cling on for a few more days. If that’s what you want to do, then so be it. But you should at least have all of the information at hand to make that choice.

Complete Article HERE!

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