Death Talk – Page 340 – The Amateur's Guide To Death & Dying

January 4, 2016January 3, 2016

10 Excuses You Tell Yourself Why You Don’t Need To Have The Conversation & 10 Reasons Why Those Excuses Don’t Hold Up

We did a survey in 2013 which found that “90 percent of people say that talking with their loved ones about end-of-life care is important yet only 30 percent of people actually have done so.” Clearly, knowing the importance of a conversation or behavior doesn’t always mean we’ll do it. How many diets and half-marathon training programs have begun in this vein? We know all the excuses a person is likely to tell themselves to avoid the conversation. Any of these look familiar?

“I know my loved one well enough to make the right call.”

There are plenty of reasons to have the conversation with your loved one beyond your belief that you know what they would want. Having a specific conversation about they would prefer could bolster your confidence, strengthen their trust and reward you with a new sense of intimacy. The conversation could really surprise you. You might discover something about your loved one that you never expected.

“I don’t need to have the conversation. I’m healthy and young.”

The Conversation Project is an initiative to encourage people to have these conversations before they are sick or terminal. If you’re healthy and well, it’s the perfect time to have the conversation. As we say, it’s always too soon, until it’s too late.

“If my loved one wants to have a conversation, they can come to me.”

This excuse is extremely powerful. It allows you to believe you’re up for the conversation while simultaneously avoiding it.. Don’t fall victim to this one. Your loved one might be thinking the same thing, trapping you both in a game of chicken, in which neither of you have important conversations about your health, your finances and your future because you’re waiting for the other to initiate it.

“I’ll just decide based off what I would want.”

This excuse provides false comfort. No need to have the conversation because you know what you would do for yourself. Right? But this method of avoidance leads to an improbable and unrealistic scenario. Even if you are the designated health care proxy that doesn’t mean you’ll be the only one who cares about the outcome. You might find yourself having to explain your choices to other family members, friends and caretakers. This might open up a disagreement between family and loved ones who believe the person in question wouldn’t want that. And you’d be surprised how many decisions you might have to make. Imagine what happens when you need to make a decision and you don’t know what you would want.

“It makes me uncomfortable.”

The thought of having The Conversation can make a lot of people uncomfortable. Understandably. You do have the right to live your life with minimal discomfort, but consider this: we’ve heard from a lot of people who wished they’d had the conversation, rarely those who wished they hadn’t. Knowing what a loved one prefers can give you A LOT of comfort during a time when you most desperately need it.

“I don’t want to encourage my death by talking about it.”

We work with many diverse communities of various beliefs, cultures, and faiths. Each has their own history, experience and theological lens through which they view death. Our mission is to ensure that your fears aren’t holding you back from a very real and human experience.

“I don’t want to offend my loved one.”

Death doesn’t have to be an offensive topic, and if your loved one perceives it to be so, maybe you can start the conversation there. Ask them why they find death so offensive. A simple question can lead into a complex and profound conversation.

“I don’t need that kind of negativity in my life right now.”

Having the conversation doesn’t have to lead to a negative experience. Many people who had the conversation describe it as a positive, freeing experience rather than a negative one.

“I don’t even know what my career path will be let alone what I prefer about my end-of-life care.”

If you’re in your twenties or thirties, it can be particularly difficult to focus on your end-of-life care. You’re focusing on surviving the hardship of life post-college. We know the #TheStruggleIsReal. But while it’s hard to relinquish the coziness of childhood irresponsibility, you must. Get your affairs together: start that 401K, use sunscreen, stop eating take-out every night, and have the conversation with your loved ones.

“Why do we need to have a conversation? Can’t my loved one just write everything down?”

Modern medicine is helping individuals live longer than ever before, and with that extended time on earth comes increased medical complications and a lot more decisions to be made at the end-of-life. People will often say, ‘if I am ever like that – pull the plug,’ but there is often no proverbial plug to pull. Instead, there is a number of cascading decisions left for your loved ones to make. Talking through your values with your family can give them the guidance to navigate the health care options presented to them. Questions like: “What matters most to them at the end of life?” “Do they want to be at home or in the hospital?” “Do they mind visitors?” “Who do they want to make sure is there?” “Is there a book they might want read to them?” “Do they want music playing or a ball game on in the room?” These are the questions you might find yourself considering. Conversations are organic; they are interactive. This conversation isn’t just about answering a set of medical questions, but exploring all the avenues you didn’t think were possible.

So really, what are you waiting for? Check out our Conversation Starter Kit and have the conversation today.

Complete Article HERE!

January 3, 2016January 3, 2016

How Uganda Came To Earn High Marks For Quality Of Death

By Rae Ellen Bichell

african-palliative-care-association — A elderly patient with chronic debilitating back pain receives a bottle of liquid morphine during a home visit from a representative of Hospice Africa Uganda.

Food coloring, water, a preservative and a pound of morphine powder. These are the ingredients in Dr. Anne Merriman’s recipe for liquid morphine.

“It’s easier than making a cake,” says Merriman, a British palliative care specialist who founded Hospice Africa in Uganda in 1993 and helped design the formula that hospice workers in Uganda have used for 22 years to craft liquid morphine. The lightest dose, dyed green to indicate the strength and to make sure people don’t confuse it with water, costs about $2 per bottle to make. Stronger doses are dyed pink and blue. A 16-ounce bottle is about a week’s supply for most patients.

Those cheap bottles of green, pink and blue liquid morphine have changed the way people die in Uganda — and are a key reason why Uganda has the best quality of death among low-income countries, according to global Quality of Death Index published by the Economist Intelligence Unit.

Back in the 1990s, two of the biggest barriers to good death in Uganda were simple: not enough doctors and not enough morphine. Largely through Merriman’s drive, Hospice Africa Uganda developed professional education in palliative care that would spread the responsibility to nurses, rather than relying on doctors. They helped make it mandatory for medical students in Uganda to study pain management – before Germany did. And Hospice Africa Uganda made liquid morphine.

“I had been one of the doctors who had said to people, ‘Sorry, there is no more we can do. You have to go home,'” says Merriman, of the time she spent working with cancer patients in Singapore starting in the 1960s. There, she says, “I found that patients with cancer were getting every treatment possible with chemotherapy, and then when it didn’t work they were sent home and they were dying in agony.”

So she sat down with a couple pharmacists from the National University Hospital and came up with a formula to make a liquid from pure morphine powder.

An HIV-positive woman, living alone in a one-room house, speaks with a visiting doctor.

Merriman would eventually be invited to Kenya to set up a hospice care program in Nairobi before founding her own organization in 1993, based in Uganda. At that time, palliative care in Africa only existed in Zimbabwe and South Africa, and the services, she says, were “started out by whites for whites.” Medication was prohibitively expensive for most patients. “The strongest they had there was codeine — if you had money. But if you didn’t have money, you only had aspirin and sometimes nothing at all,” says Merriman.

Today, the organization’s three hospice centers serve some 2,100 outpatients. “It’s not always the pain that’s their greatest worry,” she says. “It’s often ‘What’s going to happen to my children when I die?’ It may be spiritual problems, it may be cultural — things they have to carry out before they die. We try to help with all those kinds of things.”

Relieving pain is step one — and it has many benefits. Patients eat better, sleep better and live higher quality lives, even in their last days, says Merriman.

Cost was one obstacle to pain management that Merriman had to address. Another, which persists in many countries, was a deep-rooted fear of opioid painkillers.

Though morphine is considered the gold standard in palliative care for pain management, in many parts of the world fear of opioid addiction and misuse is so rampant it has a name: opiophobia.

Merriman ran up against opiophobia in Singapore and Uganda, where she says, people thought she was providing morphine so that patients could kill themselves. “And morphine can kill,” she says. But with the right regulations in place, and the right explanation to the patient and their relatives, she says, “it’s very safe.”

For over a decade, the Ugandan government has provided morphine free to the patients of prescribers who are members of a special registry, all trained through Hospice Africa Uganda.

“You’ve got to be careful, everything has to be signed for and we have to follow the regulations,” she says. “But for the last three years, we’ve been making morphine for the whole country.”

Merriman says of the 24,000 patients in total that they have prescribed oral morphine to, “we’ve had no addiction, no diversions. And the patients keep the bottle at home.”

In Uganda, she had to work hard to surmount the fear of opioids. For example, Hospice Africa Uganda worked with narcotics police, teaching them what morphine is and that it’s a legal medication.

“They need to understand that patients can take morphine and that they are not addicted, that it is handed to patients after careful assessment, and that it is a safe medication,” says Dr. Eddie Mwebesa, clinical director at Hospice Africa Uganda. Without police cooperation, he says, “there will be a lot of trouble with patients having their morphine in the home” and in transporting the drug between hospices or patient homes.

Clinicians prescribe the morphine and instruct patients to sip a dose from a marked cup. For adults, it’s usually about a teaspoon every 4 hours. Merriman says hospice workers frequently have to warn people about morphine — not because of the risk of addiction but to explain that it will not wipe out their illness. She says they feel so good after it, they often feel normal again. “They think we’ve cured them,” she says.

Even with the innovations in Uganda, there are still challenges. The organization estimates that only 10 percent of Ugandan patients in need of palliative care can access it.

“The biggest challenge we have right now is the sheer number of patients who need palliative care,” says Mwebesa — he puts the number at 250,000 to 300,000. But there is about one doctor for every 20,000 Ugandans, he says.

A palliative care physician visits an HIV-positive patient who lost her family to the AIDS epidemic. She’s resting on a mat outside her home.

Mwebesa says palliative care can cost about $25 each week for one patient. “It doesn’t sound like a lot,” he says, “But actually most people can’t afford it.” Only 2 percent of Ugandans have health insurance, so many families have to pay out-of-pocket to care for sick relatives.

Even though Uganda is far from perfect, it remains in many respects a model country for its neighbors. “We had the minister of Swaziland visit Uganda to see how Uganda reconstitutes oral morphine and then when we went back, they started doing the same,” says Dr. Emmanuel Luyirika, executive director of the African Palliative Care Association. He says the same happened with Rwanda and Malawi.

Merriman is now turning her attention to French-speaking countries in Africa. She says some countries in the region remind her a lot of Uganda back in the ’90s. “They’ve got a fear of morphine. Doctors don’t want to prescribe it because they think if they prescribe it, they’ll be accused of being addicts themselves,” she says. World Bank data shows the region has the world’s highest maternal mortality and lowest national health budgets. And people there largely pay for health care out-of-pocket.

“If you haven’t got money,” says Merriman, “you can’t even get an aspirin.” At age 80, she’s still determined to see that the dying don’t have to face such dilemmas when they seek relief from pain.

Complete Article HERE!

January 2, 2016January 2, 2016

Wellness Corner January 2016 – California’s End of Life Options Act

by Veronica Jordan, MD

Calfornia’s End of Life Options Act

Imagine you are sick, really sick. Actually, you are dying. Things feel out of your control. You are in pain, or extremely weak. Perhaps you feel too ill to enjoy the things you love to do. You want to know your options – you want to know what the rest of your life will look like, but you also want to have some control over your death. Ideally, you’d like to die with dignity.

On Monday, October 5, 2015, California became the fifth state in the nation to legally protect a patient’s right to have a physician assist him/her in dying. The End of Life Options Act, modelled closely after Oregon’s 1997 Death with Dignity Act (DWDA), allows California physicians to provide life-ending prescriptions to patients diagnosed with a terminal illness.

As a primary care physician, it’s important that I understand the details of this new law, and as we all are potential patients, it may also be of interest to you. I want to start with a few interesting facts I found in reviewing Oregon’s 16 years of experience.

1) The number of Oregonians using physician assisted suicide has increased steadily since 1998, though these deaths are still a very small percentage of Oregon deaths. In 1998, there were 16 patients who died with assistance; in 2013, there were 73. A total of 1,173 patients have received prescriptions, and 752 died with assistance.

2) Most Oregonians who use physician-assisted suicide are over age 65 (in 2013, the range was 42-96 years).

3) Most have cancer (65% in 2013, 80% in 2012). The second most common diagnosis is chronic lower respiratory disease (e.g. chronic bronchitis and emphysema).

3) 97% died at home.

4) 85% were enrolled in hospice care at the time of death.

5) The three most frequently mentioned end-of-life concerns are: loss of autonomy (93%), decreasing ability to participate in activities that made life enjoyable (88%), and loss of dignity (73%).

To whom does the CA law apply?

Per the new law, patients eligible to receive physician assistance must 1) be at least 18 years of age, 2) be residents of California, 3) be considered mentally competent, and 4) be diagnosed with a terminal illness and six months or less to live.

Patients must also be mentally and physically able to self-administer the aid-in-dying drug. Yes, each patient must be physically well enough to take the medication him/herself.

If a patient has a diagnosed “mental disorder”, the physician must refer him/her to a mental health specialist (psychologist or psychiatrist), who is responsible for determining the individual’s capacity to make medical decisions.

Which physicians can assist patients?

The process is legally mandated to be facilitated by a physician with “primary responsibility for the health care and treatment of an individual’s terminal disease”. This will include primary care physicians (i.e internists and family medicine physicians like myself) as well as specialists (e.g cancer doctors, heart doctors). In Oregon, by one measure, 64% of prescriptions were provided by primary care physicians.

How does an eligible patient actually get aid-in-dying?

First, a person who meets the above criteria must submit to their physician an oral request two times, at least 15 days apart. These requests must be done in person, face to face (not on email, telephone, etc) and documented by the physician. The physician must consult with patients in private to prevent coercion from family members.<

Second, a “consulting” physician must confirm the patient’s prognosis through a physical exam and review of medical record.

Third, the patient must submit a written request. The signed request must be witnessed by two people, who must attest the person (a) has capacity; (b) is acting voluntarily; (c) is not being coerced to make or sign the request. Only one witness can be related (blood, marriage, partnership, financial benefit), and only one can work at the healthcare facility where the person is getting treatment.

The patient must communicate with the physician to confirm 48 hours before taking the medications, and he/she must take the medications himself/herself.

The law will not take effect until 90 days after Congress adjourns the special session on healthcare.

Complete Article HERE!

December 31, 2015December 31, 2015

Dead man’s party

He didn’t die with dignity, but I celebrated anyway

By Laura Pritchett

My father’s recent death was not beautiful, and neither were any of the other deaths I’ve witnessed of late. This has left me wondering about a better path. Death is not easy, to be sure, but these were made particularly painful by medical interventions—or perhaps I witnessed the confusion between saving a life and prolonging the process of dying.

So I threw a party. Or rather, I held my first Death Café, and it turned out to be a lively, invigorating affair.

In Europe, there’s a tradition of gathering to discuss important subjects—a café philo, for a philosophical café, or café scientifique, a scientific café, and now there are café mortel, or death cafés. A death café isn’t an actual place; it’s a temporary event in various locations, such as my home, complete with decorations and, in my case, a cake with “DEATH: THE FINAL FRONTIER” scrawled on top.

My gathering was comprised of spunky friends, all in our middle years, all of us healthy. As it turns out, this is the segment of population that most seems to care about shaping the end of a life. A Pew Research Center study found that less than half of people over 75 had given much thought to the end of their lives, and incredibly, only 22 percent of them had written down wishes for medical treatment. The same study, though, found a sharp increase in all adults putting something in writing (six of 10 of us), which indicates that percentage-wise, it’s the slightly younger folks who are preparing now for their inevitable deaths.

This does not surprise me. For the last 14 years, I’ve been one of the 28 million Americans currently helping someone die. Baby Boomers and Gen Xers are caught in an unprecedented tide of caretaking both children and parents (not to mention ourselves and our own aging bodies); we are the first generation to be caught in this particular kind of caregiving-and-slow-death crisis. With medical intervention and technological wizardry, we’re forced to make decisions about procedures and medicines and ethics as never before. And we find ourselves without much guidance in a culture that’s conflicted and confused about dying.

Which is why we’re willing to talk. At my Death Café, I encouraged us not to focus on the deaths we’d witnessed in the past, but rather to speak of the deaths we want for ourselves in the future. Various results emerged. Half were afraid of the suffering that can precede death; half were afraid of death itself. Few of us had practiced death (“pretend this next breath is your last; what does that feel like?”), but all of us were convinced that doing so would only intensify and enlarge our lives.

The zeitgeist of this new movement is just now gaining momentum, but I can feel its strength and power. An unprecedented 66 percent of Americans now think there are instances in which doctors should allow a patient to die instead of doing everything possible to save that patient’s life. People would like to die—sometimes would like others to die—and this doesn’t make us morbid or crazy or unethical or mean. No. We are merciful and kind. We are as moral as we are mortal. We just want to know how to gracefully do what is going to happen anyway.

What lies ahead is unexplored territory, much like death itself, really. California recently passed “Death with Dignity” legislation, and the state representative in my hometown is reintroducing a similar bill in Colorado. Don’t get me wrong: I am all for funding research, finding cures and offering respite to caregivers. But it’s also our ethical duty to try for a chin-up, heart-steady end.

My father contracted pneumonia after 14 years of suffering with Alzheimer’s. He was given antibiotics and I was not in a legal position to object, but I’d have asked for comfort care only—not because I didn’t love him, but because I loved him enough to want him to have as natural and relaxed a death as possible.

Instead, I saw him grimace in pain and fear. I saw tubes and syringes and the sores on his body. I saw the family he’d worked so hard to create break apart under the pressure. I saw his blue eyes fade, and they taught me well: This could happen to you, too.

Death is perhaps the greatest mystery we face and the actual act of dying is the last physical act of our lives. We can strive to do it our way and to do it well. If anything deserves preparation, or some renewed clarity, death might be it. Which is why I suggest throwing a lively party.

Laura Pritchett is a contributor to Writers on the Range, an opinion service of High Country News (hcn.org). She lives in rural Colorado and her novel, Stars Go Blue, is based on her experience with her father.

Complete Article HERE!

December 29, 2015December 29, 2015

When are you officially dead? Well, that may depend on which hospital is making the call

By Sarah Kaplan

The narrow, inscrutable zone between undeniably still here and unequivocally gone includes a range of states that look like life but may not be: a beating heart, a functioning digestive system, even moving fingers and toes. Death is less a moment then a process, a gradual drift out of existence as essential functions switch off, be it rapidly or one by one.

It was exactly midnight when Colleen Burns was wheeled into the operating room at St. Joseph’s Hospital Health Center in Syracuse, N.Y. She had been deep in a coma for several days after overdosing on a toxic cocktail of drugs. Scans of electrical activity in her brain were poor, and oxygen didn’t seem to be flowing. Burns was brain dead, her family was told; if they wanted to donate her organs, now was the time to do it.

But there, under the bright lights of the prep room in the OR, Burns opened her eyes. The 41-year-old wasn’t brain dead. She wasn’t even unconscious anymore. And doctors had been minutes away from cutting into her to remove her organs.

This is the nightmare scenario, the one that sends doctors and neurologists into cold sweats. It’s the reason that, in 2010, the American Academy of Neurology issued new guidelines for hospitals for determining brain death – the condition that legally demarcates life from whatever lies beyond. Those standards, according to Yale University neurologist David Greer, who worked on them, are meant to ensure that no patient is declared dead unless they really are beyond all hope of recovery.

“This is truly one of those matters of life and death, and we want to make sure this is done right every single time,” he told NPR.

But five years later, according to a study led by Greer that was published in the journal JAMA Neurology Monday, not all hospitals have adopted the guidelines.

Of the nearly 500 hospitals Greer and his colleagues surveyed over a three year period, most facilities did not require that someone with expertise in neurology or neurosurgery be present to determine brain death. At more than half of hospitals, the person who makes the call doesn’t even have to be the patient’s attending physician. A majority also didn’t require doctors to test for hypotension (abnormally low blood pressure) or hypothermia, both of which can suppress brain function which could mimic the appearance of brain death.

There were large improvements in standardization of brain death assessments across hospitals since the 2010 criteria were published. The survey also looked at standards, not practices.

But the lingering lapses are still worrying, Greer told NPR.

“There are very few things in medicine that should be black and white, but this is certainly one of them,” he said. “There really are no excuses at this point for hospitals not to be able to do this 100 percent of the time.”

Burns’s near-disastrous declaration of death happened in 2009, before the new guidelines were released, though a U.S. Department of Health and Human Services report on the incident found that St. Joseph’s had failed to meet previous standards for assessing death. Hospital staff missed several signs that Burns’s brain was still functioning the night she was due for organ donation surgery: her nostrils flared, her lips and tongue moved, she was breathing “above the ventilator” (meaning, taking breaths of her own accord). And when a nurse performed a reflex test, scraping a finger along the bottom of Burns’s foot, the woman’s toes curled inward, according to the Syracuse Post-Standard.

Doctors failed to order repeat CT scans and inexplicably and inaccurately said that she suffered from cardiac arrest when she hadn’t. Crucially, they also failed to measure whether the drugs she had taken still lingered in her system, preventing her from exhibiting even the most primitive reflexes expected of someone with brain activity.

This is a widespread problem, Greer’s report indicates: only about 32 percent of hospitals surveyed required drug tests to rule out toxic levels that can mimic the loss of primitive reflexes associated with brain death.

As soon as Burns opened her eyes, she was rushed back into the ICU and her doctors resumed treatment. She ultimately recovered from her overdose and was discharged two weeks later. But 16 months after the near-miss in the OR Burns committed suicide, her mother told the Post-Standard.

Burns’s mother, Lucille Kuss, said that depression, not what happened at the hospital, is what drove Burns to her death.

“She was so depressed that it really didn’t make any difference to her,” Kuss said of the incident.

Cases like Burns’s are increasingly rare, but they are emblematic of an anxiety at the root of all discussions about brain death. If death is a process, at what point in the process is the person no longer alive?

For most of history, this question was mostly moot. In the Victorian era, for example, doctors couldn’t keep blood pumping through a permanently unresponsive person’s body, even if they wanted to, and a person who lost brain function would surely quit breathing shortly after. Determining the exact point of death was less a medical necessity than a philosophical diversion: In the early 1900s, Boston doctor Duncan MacDougall recruited a number of terminally ill patients to lie down on a massive scale during their final moments. By measuring fluctuations in their weight at the moment they died, MacDougall claimed, he could determine the mass of the soul.

The advent of organ donation procedures in the 1960s changed that. That period of collapse as functions failed became not only a tragic inevitability, but a vital window when organs could be taken from a dead body and used to keep another alive. Yet defining that window is medically and ethically complicated. Open it too early, as Burns’s doctors almost did, and you risk sacrificing a patient who might have survived. Too late, and the organs will deteriorate along with the life they once sustained.

This is how we arrived at a definition of death as brain death, the complete and irreversible loss of brain function, including in the brain stem (which controls the heart and lungs). It comes largely from a 1968 definition written for the The Journal of the American Medical Association by an ad hoc Harvard Medical School committee, and then affirmed by a blue ribbon medical commission just over a decade later. A person can also be declared dead if they suffer an irreversible cessation of respiratory and circulatory functions – in other words, their heart and lungs permanently stop.

Some critics of brain death as a barometer for organ donation worry that it might encourage doctors to give up on their patients too soon.

Of course, the extraction of organs from a failing body is not the only reason to come up with a legal definition of death. It also helps hospitals to determine when and how to end life-saving interventions and remove a patient from life support.

The logic behind marking brain death as the end of life is that existence without a brain isn’t living.

“The brain is the person, the evolved person, not the machine person,” Cornell University neurologist Fred Plum said at a symposium on comas and death in 2000, according to the New Yorker. “. . . We are not one living cell. We are the evolution of a very large group of systems into the awareness of self and the environment.”

The brain is the person, the evolved person, not the machine person

But not everyone agrees. Cultural and legal definitions of life and death vary – in an interview with NPR, Georgetown University medical ethics professor Robert Veatch called defining death “the abortion question at the other end of life.”

Right now, the family of Jahi McMath, a California teenager who was declared brain dead two years ago but has been kept on life support, is suing to have her death certificate invalidated according to the Associated Press. The McMaths are devout Christians, their lawyer wrote in a brief, who believe that “as long as the heart is beating, Jahi is alive.”

McMath is currently on a ventilator in New Jersey, where state law allows hospitals to take a family’s religion into consideration when making decisions about end-of-life procedures.

Yet despite the legal, medical and moral complexities in determining brain death, there is no federally mandated procedure for doing so, according to the New York Times. There are only the guidelines issued by neurologists, and how hospitals choose to apply them.

That they do so inconsistently only exacerbates the anxieties people have about death and organ donation, Leslie Whetstine, a bioethicist at Walsh University in Ohio, told NPR.

“If one hospital is using a testing method that’s different from another hospital,” she said, “people might wonder: ‘Are they really dead?’”

Complete Article HERE!

December 28, 2015December 28, 2015

When Dying Alone in Prison Is Too Harsh a Sentence

By RACHAEL BEDARD

A prisoner in hospice at the Coxsackie Correctional Facility.

MY patient, a man in his 60s, whispered “Gracias, God bless” over and over as I moved his legs during an exam. Our palliative care team had been called in to help manage his pain after his liver cancer recurred. The cancer had already metastasized to his spine, creating pressure on his spinal cord that left him nearly paralyzed from the waist down. He seemed like a felled tree. We found him tearful and scared. But he wasn’t alone.

At his side were the corrections officers who had accompanied him from the prison where he was incarcerated on a conspiracy charge related to a drug arrest. They guarded his door day and night and screened all his visitors. As the doctors told him that his life would soon be over, his officers watched television, ate snacks, and read the newspaper. One day on my way out of his room, I asked an officer whether the patient would be told that he was being moved to a different prison once he left the hospital. He wasn’t entitled to know, said the officer flatly, because he was “property of the state.”

A guard in the prison hospice at the Coxsackie Correctional Facility.

In our prison system, there are various programs called “compassionate release” or sometimes “medical parole,” whereby elderly or seriously ill prisoners may be released to the community before the end of their sentence. Since 1992, 371 people have been released through the medical parole program in New York State. (For the sake of comparison, about 100 inmates die from natural causes every year in the New York prison system.) Only 30 inmates filed applications for medical release in 2014, of whom 17 were released and six died before their review. In the federal prison system, the numbers are even more dismal; 101 federal inmates were approved for compassionate release in 2014 out of a total federal prison population of 214,000 people.

My patient’s sentence was short and he would have been eligible for parole within a year. He had a loving family desperate to have him home, where they could care for him. I called the prison to follow up and asked the doctor there if he intended to file a petition for medical parole. He told me he had, but warned that the process was cumbersome. Still, he was hopeful.

There are medical reasons, not just compassionate ones, for early release. Providing care to a patient with an illness this serious is complex and prone to error in the best of circumstances. He needed palliative care teams to do what they do well: develop advanced care plans, identify the patient’s goals of care, aggressively manage pain and other symptoms, and facilitate communication among different specialists.

While my patient was in the hospital, we could not provide him with any information about when he was leaving or when he would follow up with his doctors. After being discharged, he was sent to a different prison and was housed in its medical facility. Scared and alone, he began to decline quickly. Initially, his wife wasn’t allowed to visit. When she finally got permission, she was alarmed to find him so ill and she struggled with being apart from him.

Within a few weeks, he became acutely sick with an infection, and was admitted to a hospital near the prison. His wife traveled two hours each way to see him. His children had to get special permission to visit, and his daughters initially had trouble getting approved because they did not share his last name. His wife told me she sat at his bedside and sang him their private love song, over and over.

When his time came, she was in a car making the long drive home for the night, and a corrections officer was at his side. A date to review his application for release had been set for four weeks after the night that he died. His wife later lost her job for having spent so much time with him.

Our aging, ill prisoner population is both a humanitarian crisis and an economic challenge that demands the collaborative attention of physicians, corrections officials, legislators and advocates who can devise national guidelines for medical parole. Dr. Brie Williams, a palliative care physician at the University of California, San Francisco, who is an expert in correctional health, has called for a national commission to develop an evidence-based approach to address the compassionate release process, with an eye toward reducing the red tape that can tie up critical cases when every day matters.

It shouldn’t be acceptable that my patient, who posed no danger to the community and who had a family who loved him, should have died incarcerated. He deserved the chance to make peace at the end of his life, to be with family. If we value sparing other people this kind of death, we need a fairer, more functional and quicker system that makes compassionate release a real possibility.

Complete Article HERE!

December 27, 2015December 27, 2015

‘The sudden death of my daughter changed my life forever’

When Valerie O’Riordan was told her daughter had died, she dropped to the ground.

MY LIFE AS as I knew it changed forever on the 10 August 2009. I was in Lourdes, France on a pilgrimage with my elderly mum, my sisters and other family members.

On that morning we were visiting a tiny village called Bartrès. After mass, we were strolling back towards the buses laughing and joking and in very high spirits, happy and content and carefree. What happened in the next few moments will haunt me forever.

My sister June answered her phone, and immediately I knew whoever was speaking to her had upset her. Not for one moment did I imagine the impact that phone call would have on my life. She looked straight at me and her words were, “Paul said Debbie is dead”.

I dropped to the ground. Every horrendous emotion ripped through me: devastation, heartbreak, sadness, the impact was unbelievable. I felt I couldn’t breathe, I thought I was going to die. My darling, beautiful, only daughter Debbie was gone and I never even got to say goodbye, or hold her one more time.

My beautiful daughter

No, I thought, it couldn’t be right. Someone got it all wrong. I tried to speak to my husband Paul but we were inconsolable. My two sisters and I travelled back to the hotel in a car. When we arrived I then had to tell my beloved mum that our Debbie had died. My mum adored her as she was their first granddaughter and they looked after her when I went back to work after she was born.

My mum was heartbroken, and as the realisation began to sink in all I wanted to do was get home. Debbie had taken my young niece Lauren for a mini-break to London, and they had arrived back to Cork the night before after having a great weekend away together.

They headed off to bed after texting me goodnight. The following morning Lauren woke to find Deb at the end of the bed. Having tried to revive her and gotten no response, Lauren went and got my son David.

Immediately, Dave knew she was gone. He telephoned his dad and the emergency services and then that life-changing call to tell me what no parent ever wants to hear.

Debbie died of Sudden Unexpected Death in Epilepsy – SUDEP. At 16, Debbie had her first epileptic fit and for ten years she was on medication and managed it very well. A few weeks previous to her death, her consultant started to wean her off her meds. She died one month later at the age of 26.

Realising she is gone

Today, six years on, my life is so much different and so much has changed because Debbie is gone. There isn’t an hour of any day that I don’t think of her or long to see and hold her, but yes, life must carry on and I too must go on living.

I have a loving husband and a great son and an amazing extended family and they too mourn and miss her so much. All the love I had for Deb is now for everyone else.

After Debbie died, I went looking for people who were also bereaved parents and found Anam Cara. It was perfect.

Paul and I went to our first meeting three months after Debbie passed. In Ireland every year 2,100 families experience the death of a son or daughter. For some families the death has been expected because of illness while for others it’s sudden through accidents, suicide or substance abuse.

At Anam Cara we focus on the similarities of our loss rather than the differences, and have found a level of support and understanding that others cannot offer. What unites us all is that we are all bereaved parents.

Anam Cara is an all-Ireland organisation founded by bereaved parents. It provides a range of online and face-to-face services, with local groups meeting monthly across the four provinces. Anam Cara is today launching a seven-booklet Information Pack for bereaved parents which can be read or downloaded here. To request hard copies or find out more about Anam Cara services please call 01 404 5378 or 085 2888 888, or email info@anamcara.ie.

Anam Cara has also just produced a series of information videos in which bereaved parents speak on different themes such as ‘Sudden and Traumatic Death’ or ‘The Grieving Family’.

Complete Article HERE!