Month: April 2018

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When do you know you’re old enough to die?

Barbara Ehrenreich has some answers

Author and journalist Barbara Ehrenreich at her home in Alexandria, Virginia, on 2 March.

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With her latest book, Natural Causes, Barbara Ehrenreich notes that there’s an age at which death no longer requires much explanation

 
[F]our years ago, Barbara Ehrenreich, 76, reached the realisation that she was old enough to die. Not that the author, journalist and political activist was sick; she just didn’t want to spoil the time she had left undergoing myriad preventive medical tests or restricting her diet in pursuit of a longer life.

While she would seek help for an urgent health issue, she wouldn’t look for problems.

Now Ehrenreich felt free to enjoy herself. “I tend to worry that a lot of my friends who are my age don’t get to that point,” she tells the Guardian. “They’re frantically scrambling for new things that might prolong their lives.”

It is not a suicidal decision, she stresses. Ehrenreich has what she calls “a very keen bullshit detector” and she has done her research.

The results of this are detailed in her latest book, Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer, published on 10 April.

Part polemic, part autobiographical, Ehrenreich – who holds a PhD in cellular immunology – casts a skeptical, sometimes witty, and scientifically rigorous eye over the beliefs we hold that we think will give us longevity.

She targets the medical examinations, screenings and tests we’re subjected to in older age as well as the multibillion-dollar “wellness” industry, the cult of mindfulness and food fads.

These all give us the illusion that we are in control of our bodies. But in the latter part of the book, Ehrenreich argues this is not so. For example, she details how our immune systems can turn on us, promoting rather than preventing the spread of cancer cells.

When Ehrenreich talks of being old enough to die, she does not mean that each of us has an expiration date. It’s more that there’s an age at which death no longer requires much explanation.

“That thought had been forming in my mind for some time,” she says. “I really have no hard evidence about when exactly one gets old enough to die, but I notice in obituaries if the person is over 70 there’s not a big mystery, there’s no investigation called for. It’s usually not called tragic because we do die at some age. I found that rather refreshing.”

In 2000, Ehrenreich was diagnosed with breast cancer (she wrote the critical, award-winning essay Welcome to Cancerland about the pink ribbon culture).

The experience of cancer treatment helped shape her thoughts on ageing, she says.

“Within this last decade, I realised I was not going to go through chemotherapy again. That’s like a year out of your life when you consider the recovery time and everything. I don’t have a year to spare.”

In Natural Causes, Ehrenreich writes about how you receive more calls to screenings and tests in the US – including mammograms, colonoscopies and bone density scans – as you get older. She claims most “fail the evidence-based test” and are at best unnecessary and worst harmful.

Ehrenreich would rather relax with family and friends or take a long walk than sit in a doctor’s waiting room. She lives near her daughter in Alexandria, Virginia, and likes to pick up her 13-year-old granddaughter from school and “hang out with her a while”.

Work is still a passion too. She fizzes with ideas for articles and books on subjects that call for her non-conformist take.

Once a prominent figure in the Democratic Socialists of America, she is also busy with the Economic Hardship Reporting Project she founded, which promotes journalism about inequality and poverty in the US, and gives opportunity to journalists who are struggling financially. (The Guardian often partners with the organisation.)

Ehrenreich, who is divorced, has talked to her children – Rosa, a law professor, and Ben, a journalist and novelist – about her realisation she is old enough to die, but “not in a grim way”. That wouldn’t be her style. While a sombre subject, she chats about it with a matter-of-fact humour.

“I just said: ‘This is bullshit. I’m not going to go through this and that and the other. I’m not going to spend my time, which is very precious, being screened and probed and subjected to various kinds of machine surveillance.’ I think they’re with me. I raised them right,” she laughs.

“The last time I had to get a new primary care doctor I told her straight out: ‘I will come to you if I have a problem, but do not go looking for problems.’”

She pauses: “I think I beat her into submission.”

Natural Causes is Ehrenreich’s 23rd book in 50 years. Much of her work is myth-busting, such as Bright-sided, which looks at the false promises of positive thinking; other work highlights her keen sense of social justice. For her best-selling 2001 book Nickel and Dimed, she went undercover for three months, working in cleaning, waitressing and retail jobs to experience the difficulties of life on a minimum wage.

A recent exchange with a friend summed up what Ehrenreich hoped to achieve with Natural Causes.

“I gave the book to a dear friend of mine a week ago. She’s 86 and she’s a very distinguished social scientist and has had a tremendous career. “She said: ‘I love this, Barbara, it’s making me happy.’ I felt ‘wow’. I want people to read it and relax. I see so many people my age – and this has been going on for a while – who are obsessed, for example, with their diets.

“I’m sorry, I’m not going out of this life without butter on my bread. I’ve had so much grief from people about butter. The most important thing is that food tastes good enough to eat it. I like a glass of wine or a bloody mary, too.”

Barbara Ehrenreich: ‘Cancer is a cellular rebellion.’

Yet despite her thoughts on the “wellness” industry with its expensive health clubs (fitness has become a middle-class signifier, she says) and corporate “wellness” programs (flabby employees are less likely to be promoted, she writes), Ehrenreich won’t be giving up the gym anytime soon. She works out most days because she enjoys cardio and weight training and “lots of stretching”, not because it might make her live longer.

“That is the one way in which I participated in the health craze that set in this country in the 70s,” she says. “I just discovered there was something missing in my life. I don’t understand the people who say, ‘I’m so relieved my workout is over, it was torture, but I did it.’ I’m not like that.”

In Natural Causes, Ehrenreich uses the latest biomedical research to challenge our assumption that we have agency over our bodies and minds. Microscopic cells called macrophages make their own “decisions”, and not always to our benefit – they can aid the growth of tumours and attack other cells, with life-threatening results.

“This was totally shocking to me,” she says. “My research in graduate school was on macrophages and they were heroes [responsible for removing cell corpses and trash – the “garbage collector” of the body]. About 10 years ago I read in Scientific American about the discovery that they enable tumour cells to metastasise. I felt like it was treason!”

She continues: “The really shocking thing is that they can do what they want to do. I kept coming across the phrase in the scientific literature ‘cellular decision-making’.”

This changed her whole sense of her body, she says.

“The old notion of the body was like communist dictatorship – every cell in it was obediently performing its function and in turn was getting nourished by the bloodstream and everything. But no, there are rebels – I mean, cancer is a cellular rebellion.”

Ehrenreich, an atheist, finds comfort in the idea that humans do not live alone in a lifeless universe where the natural world is devoid of agency (which she describes as the ability to initiate an action).

“When you think about some of these issues, like how a cell can make decisions, and a lot of other things I talk about in the book, like an electron deciding whether to go through this place in a grid or that place. When you see there’s agency even in the natural world. When you think about it all being sort of alive like that, it’s very different from dying if you think there’s nothing but your mind in the universe, or your mind and God’s mind.”

Death becomes less a terrifying leap into the abyss and more like an embrace of ongoing life, she believes.

“If you think of the whole thing as potentially thriving and jumping around and having agency at some level, it’s fine to die,” she adds reassuringly.

Complete Article ↪HERE↩!

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I’m dying, and I’d like D.C.’s Death with Dignity Act to help

People attend a House Oversight and Government Reform Committee business meeting at the Rayburn House Office Building in February 2017 for a discussion of D.C.’s Death with Dignity Act.

By Mary Klein

I am dying of ovarian cancer. I do not know how long I have to live. I have endured radical surgery, 65 chemotherapy treatments, countless trips to the emergency room and admissions to the hospital to extend my life. Now, my illness has developed resistance to treatments, and the last two drugs did not slow the growth of my tumors. I can die from a combination of chemotherapy and cancer or from just the cancer itself. I recently decided to cease treatment and pursue palliative care so I can minimize my suffering and maximize the quality of life that I have left with my wife, Stella, and our beloved dog, Adina.

I love my life, but now I need to plan for my death. I would like the option of medical aid in dying, which is authorized under D.C.’s Death with Dignity Act and that took effect in February 2017 for those terminally ill patients who meet strict requirements. The law allows mentally capable terminally ill adults with six months or less to live to get prescription medication they can decide to take if the suffering becomes unbearable, so they can die peacefully in their sleep, at home, surrounded by loved ones.

March 23 was a wonderful day for me and other terminally ill D.C. residents. President Trump signed an omnibus spending bill that did not include a House-passed provision to repeal the law or an administration proposal to thwart funding of its implementation.

Coincidentally, March 23 also was the 20th anniversary of the first prescription for medical aid in dying in the nation, under the Oregon Death With Dignity Act, the model for medical aid-in-dying laws in the District and five other states.

Before the federal spending bill was enacted, I lived in a state of uncertainty. I feared that opponents would be successful at invalidating the law. Fortunately, they were not. The law has been upheld, and the D.C. Department of Health issued rules last June to implement it, but health-care providers have not done the work necessary to allow patients such as me to use it. The threat that the law might be repealed made it unrealistic for doctors, health-care systems and pharmacists to invest the time to develop policies to participate in it. The D.C. Department of Health confirmed at its performance oversight hearing in February before the D.C. Council, at which I testified, that not one resident has obtained a prescription since the law that took effect more than a year ago.

Now, almost two months after the hearing, I still cannot find a physician who is willing to write a prescription for medical aid in dying. I and other terminally ill residents in the District need a compassionate doctor to come forward and embrace this option for dying.

I have been surprised at how many people, including physicians, do not know that medical aid in dying is now legally authorized in the District. Assumptions that congressional opponents would defeat the law brought its full implementation to a standstill.

Now that the immediate threat of the law’s repeal is over, I would like to encourage the D.C. Department of Health to work with health-care advocacy organizations such as Compassion & Choices, which helped implement the Oregon law, to launch an education campaign here and put the law into action. This collective effort would require working with D.C. doctors, health-care systems and pharmacists not only to explain the rules but also to consider any changes to ensure that the law does not discourage participation. Terminally ill patients need to know that medical aid in dying is an option.

It also took five months after the Oregon law went into effect for the first doctor to write a prescription. Once he did, others followed. Oregon now has an end-of-life care system that recognizes this compassionate option for dying.

More than a dozen safeguards in the D.C. law have been time-tested for a combined nearly 40 years in states that have authorized medical aid in dying without a single documented case of abuse or coercion. The D.C. rules are more complicated than those in other states, which might make it harder for terminally ill D.C. residents such as me to access this option to die peacefully in their sleep, at home, surrounded by loved ones. The result would be needless suffering.

It’s time we make compassion the priority of this law.

Complete Article ↪HERE↩!

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Culture clash: Asian Americans balance Christianity and culture in rituals honoring their ancestors

by Ruth Tam

[W]hen my great-grandmother died, I didn’t know how to pay my respects.

I was 9 years old, and had seen other Chinese people bow at funerals and gravesites before. One, two, three times.

But, my parents told me as we approached her coffin, we don’t do that.

Nor would we participate in any of the traditional Chinese ancestral rites of burning incense and paper money, or leaving food for her as an offering in the afterlife.

Like 42 percent of Asian Americans, my parents are Christian. And for believers like them, Chinese ancestor veneration inappropriately elevates the dead. The bowing, in particular, is akin to “idol worship,” a direct contradiction of their faith. The burning of money and offering of food are supposed to be gifts to the dead in the afterlife. But to Christians, death isn’t the door to a spirit world where material things are needed, but the beginning of life in heaven.

This year, my father told me we would visit my grandparents’ graves around Qingming Jie, the annual Chinese Tombsweeping festival, which this year fell on April 5. Joining millions of Chinese families celebrating the spring holiday to honor the dead, we planned to make the pilgrimage to our family burial grounds. We would clean my grandparents’ gravesites and reflect on their lives. But we wouldn’t bow, burn incense and paper money or leave food.

My parents left Hong Kong 50 years ago. For the first time I wondered: Are they now more Christian than Chinese? Had Christianity become our primary culture here in America?

My family isn’t the only one grappling with these questions.

Before Chinese American Jordan Kwan and his family converted to Christianity, they would bring oranges and a dim sum dish to a cemetery in Oakland, Calif., and participate in all the traditional ancestor veneration rituals.

He remembers them changing their routine when he was in the sixth grade.

“You don’t have to bow,” his newly Christian parents told him.

How did Chinese families like ours come to feel that our culture was incompatible with Christianity?

Sze-Kar Wan, professor of New Testament at Southern Methodist University, says it stems from an error in translation.

In ancient Chinese, the word for ancestor veneration, “jizu,” was defined as the act of sacrifice to the deities. In a modern context, Wan says it simply describes the commemoration of the dead.

Historically, practicing ancestral rites is deeply knit into Chinese culture — particularly because it embodies filial piety, the Confucian virtue of respect for one’s elders. Although it plays a central role in the Tombsweeping festival, it is traditionally observed during all major holidays.

Europeans initially believed China to be an enlightened society without Christianity, but that changed by the mid-18th to 19th century. Western missionaries viewed some aspects of Chinese culture as an obstacle to their religion and did everything to counter them, Wan says.

This included translating “jizu” to “ancestor worship.” In doing so, missionaries played a part in defining Chinese tradition to the English-speaking world and pitting it against a Christian God.

“Do not worship any other god,” the Bible reads. “The Lord … is a jealous God.”

Chinese American Serena Cerezo Poon remembers traveling to Hong Kong from California for her grandmother’s funeral in 2003. Her cousin played Christian worship music on his guitar, drowning out the Buddhist monks chanting at nearby services. Her mother placed a sign next to her grandmother’s coffin that read, “No Bowing.”

“I was surprised she didn’t physically stand next to the coffin and stop people mid-bow,” Cerezo Poon said.

Before her family’s trip, Cerezo Poon had researched the influence missionaries had in China as a college student.

“Christian missionaries said it was evil,” she says of ancestor veneration. “But when it’s such a big part of the culture, it was like them saying ‘You can’t be Chinese anymore, it’s evil.’ ”

After Catholic and Protestant missionaries established more churches in China by the 19th century, many new converts were ostracized for their faith and their rejection of Chinese traditions such as ancestor veneration. In extreme examples, such as the 1899 Boxer rebellion, they were persecuted and killed.

Despite political challenges, Christianity in China has endured into the 21st century. In 2010, the Pew Research Center estimated the country’s Christian population to be over 67 million, 5 percent of the national population, and other scholars say current numbers could be nearly twice that.

Today, the influence of Western missionaries is still evident in Chinese Christians whose families like mine, Kwan’s and Cerezo Poon’s immigrated to the United States.

Chinese people decorate the gravesite of their deceased relative to mark the Qingming Festival at the Jiu Gong Shan cemetery in Beijing, in observance of the Qingming Festival, also known as Tombsweeping Day.

But the hard-line approach against ancestor veneration could be fading in a world where cultures are becoming increasingly hybrid.

“I think one could look at ancestor veneration as a continuation of memory,” Wan says. Our dead “do not have independent status or power from God, but we can acknowledge that they are now in the repose of God and that it is important to remember them. That could really be worked into the modern Christian worldview.”

Other Asian Americans have found a compromise between their mother culture and adopted religion.

Desiree Nguyen is a Vietnamese American Catholic whose ancestor veneration rituals closely resemble Chinese traditions.

“When I found out that some Vietnamese gave up ancestor worship after converting to Catholicism, I thought it was a real shame,” Nguyen says. “Ancestor veneration, or respecting elders, is really a crucial part of our culture.”

The Vatican has recognized this and officially allowed Vietnamese Catholics to practice ancestral veneration in 1968.

On major holidays, including Lunar New Year and Christmas, Nguyen’s family gathers around an altar for her ancestors. They light incense, bow three times, say Christian prayers and sometimes pray the rosary.

“I always thought white Christianity’s approach to death and spirits was pitifully narrow,” says Nguyen of the early condemnation of ancestor veneration. “Christianity is deeply layered and complex, and that’s a beautiful thing.”

Regardless of religion, it can be difficult for immigrants to uphold and pass on rituals from their home country.

When my family paid our respects at my grandparents’ gravesites this spring, I couldn’t recall the last time we visited.

But we poured water over their headstones, swept wet twigs from the crevices and scrubbed the surface clean. We repurposed palm crosses from Palm Sunday, sticking them in the moist ground behind the memorials. Borrowing from Jewish tradition, we placed a stone on top of their graves, leaving notes for our deceased beneath.

We came to the cemetery to honor our ancestors. And when we remembered the dead, we reflected ourselves — a mix of culture and faith in a country where we now celebrate both.

Complete Article ↪HERE↩!

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A Harder Death for People With Intellectual Disabilities

By TIM LAHEY, M.D.

[S]everal weeks after my patient was admitted to the intensive care unit for pneumonia and other problems, a clear plastic tube sprouted up from the mechanical ventilator, onto his pillow and down into his trachea. He showed few signs of improvement. In fact, the weeks on his back in an I.C.U. bed were making my 59-year-old patient more and more debilitated.

Still worse, a law meant to protect him was probably making him suffer more.

When the prognosis looks this bad, clinicians typically ask the patient what kind of care they want. Should we push for a miracle or focus on comfort? When patients cannot speak for themselves, we ask the same questions of a loved one or a legal guardian. This helps us avoid giving unwanted care that isn’t likely to heal the patient.

This patient was different. Because he was born with a severe intellectual disability, the law made it much harder for him to avoid unwanted care.

In New Hampshire, where I practice, and in many other states, legal guardians of people with intellectual disabilities can make most medical decisions but, by law, they cannot decline life-sustaining therapies like mechanical ventilation. These laws are meant to protect patients with disabilities from premature discontinuation of lifesaving care. Yet, my patient was experiencing the unintended downside of these laws: the selective prolonging of unpleasant and questionably helpful end-of-life care in people with disabilities.

For my patient’s guardian to discontinue unwanted life-sustaining therapies, she had to petition a probate court judge. Busy court dockets being what they are, this can take weeks. Once in court, the judge asks questions aimed at making the right legal decision. How sure is the guardian or family member of the patient’s wishes? What’s the doctor’s best estimate at a prognosis? Often the judge will ask an ethicist like me to weigh in on whether withdrawal is an ethically permissible option. Then the judge makes a decision.

This slow, impersonal, courtroom-based approach to end-of-life decision-making is a far cry from the prompt, patient-centered, bedside care that all of us deserve.

This legalistic approach to end-of-life decision-making also creates unreasonable expectations of legal guardians. Most loved ones have a sense of what the patient they represent would want at the end of life, but they would probably squirm to justify that intuition in a court of law. Yet this is routine for legal guardians of people with intellectual disabilities in my state and others with similar laws. This biases our care toward continuation of what are often uncomfortable, aggressive and potentially unwanted end-of-life treatments.

My patient’s legal guardian was not a family member, but she had known him for years before this hospitalization. She said my patient’s quality of life came from interacting non-verbally with caregivers, listening to music, and eating favorite foods like applesauce. She described the excited hoots he would make when interacting with a favorite nurse.

The contrast to what my patient was experiencing in the I.C.U. was stark. He was sedated. His unsmiling mouth drooped open, a breathing tube between his lips. In place of music, there were the beeps and whirs of the machines that kept him alive. He could not eat. Plastic tubes penetrated every orifice.

Still further, my patient endured the discomforts and indignities that accumulate even in the best I.C.U.s. His muscles grew weaker and stiffer. He developed skin sores and infections. He needed minor surgeries to place the tubes that delivered artificial nutrition and artificial breaths every hour of the day.

Seeing all of this, my patient’s guardian did not think my patient would want to live this way. The I.C.U. can save your life, but it is not where most of us want to die.

In other states, patients with intellectual disabilities have an equal right, via the advocacy of their legal guardians, to avoid unwanted care. A 2010 New York State law, for instance, lets the legal guardians of people with intellectual disabilities withdraw life-sustaining therapies as long as doing so fits the guardian’s sense of the patient’s wishes.

In accord, a policy statement from the American Association on Intellectual and Developmental Disabilities states, “Withdrawing or withholding care may be appropriate in some situations …. Treatment should not be withdrawn or withheld only because a person has a disability.”

This reference to substandard medical treatment of people with disabilities is important. In hospitals across the country, people with disabilities have been subject to all manner of substandard care, including inappropriately premature discontinuation of end-of-life care. This has improved over the past few decades, but a new systematic review shows people with intellectual disabilities still have difficulty accessing high quality end-of-life care, including palliative care specialists. That means the medical system routinely shortchanges people with intellectual disabilities at the end of life, and states like mine add legal insult to that medical injury.

My patient’s caregivers held several multidisciplinary meetings to choose the right way forward. There was consensus that the medical prognosis was dim, and the legal guardian said the patient did not have adequate quality of life. Multiple physicians wrote letters to support a petition to the court to refocus care around comfort and dignity. Ultimately, the legal guardian and the Office of Public Guardian felt they could decline continued intensive care only if it was completely futile, and decided not to submit the petition to the court.

To date, my patient has spent over 140 days in the hospital with little overall improvement. He has endured multiple medical interventions, and unavoidable complications are mounting. Unless the laws change, I.C.U.s across the nation will continue to do the same thing to other patients just like him.

Complete Article ↪HERE↩!

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Coping With The Stigma of Grieving an Overdose Death

[S]ome people struggle to understand and communicate their emotions surrounding death and grief. When a loved one dies, they dive into planning services, organizing households or closing finances. However, the silence can be deafening when it comes to the avoidance of conversations about drug-related deaths. Overdose deaths outnumber traffic fatalities in the US, which means that we most likely all know — and are maybe even close to — someone who lost their battle to drug addiction. In fact, with the opioid epidemic still tearing through our country, the number of deaths due to overdose in 2016 crept into the top ten leading causes of death in the US.

The truth is, we don’t like to acknowledge that addiction can touch anyone. We blame weakness, willpower, poor parenting or poor choices, making it hard to imagine the real faces behind those statistics — the real lives lost and the real people grieving.

Grief for an overdose death is still a social taboo. It’s cloaked in stigma, often resulting in survivors feeling guilt and shame about discussing their grief and loss. However, for those experiencing the bereavement of an overdose death, there are ways to cope. Here are a few reasons why drug-related deaths are so difficult to talk about, and how we can open the dialogue up with compassion and understanding.

Much like when you lose a loved one to suicide, overdose deaths elicit complex emotions where people may believe the death was somehow avoidable. You might even feel like you can’t talk to anyone about the way you feel without an overwhelming sense of grief and shame.

You may struggle to talk about your grief because you feel like you could have done more to save them from their addiction and prevent the loss. If there were times that the deceased loved one asked you for money and you turned them away — fully knowing they’d use the money on drugs — you may feel guilty that maybe that money could have extended their lives. Another source of guilt comes from the sense of relief you might feel after years of fighting to help this person make it through addiction.

When grieving an overdose death, on top of feeling a sense of responsibility, you might also feel shame. You might feel the need to compare the experience of your loved one’s death with people who have lost someone to cancer, accidents or heart disease — and feel unworthy. As a parent of a child who died from an overdose, you might sense that others see the death as your child’s fault or that they deserved it. You may even wonder if they will think you were a bad or neglectful parent for having a child who suffered from addiction.

Feeling Judgment or Blame

When a death feels preventable, guilt and shame can limit your comfort of opening up about your feelings. Not only can you feel like your loved one is being judged, but that you are as well. When you try to open up, you might feel others blaming the death on the person and not on the addiction. When surrounded by these negative emotions, you might even start to blame yourself or family members for not doing more to save the person’s life.

The truth is — and you’ll have to tell yourself this again and again — while guilt, shame and blame are natural emotions in the grieving process, they aren’t rooted in truth. They are grounded in the very stigma we’re trying to shatter.

Judgment and blame can drive individuals and families to stay hidden instead of opening up to create a safe, healing space for everyone who has been touched by addiction. Nearly 50% of parents who have lost a child to overdose reported hearing remarks about blaming the deceased, so this is a conversation we need to take to the mainstream.

Feeling Reluctant and Isolated

In 2017, America saw more than 70,000 drug-related deaths. Addiction disturbs thousands of lives each year, including family and friends, yet we still feel an overwhelming sense of isolation because of society’s reluctance to talk about how we feel when we lose someone we love to drugs and alcohol.

If you have difficulty accepting the cause of death — the way many struggle to acknowledge how serious the addiction became — you might feel reluctant to share your grief with others. That isn’t just about talking to friends and family, but also a reluctance to speak to a grief counselor, support groups or a mental health professional. When we feel isolated, opening up and reaching out becomes more difficult. We don’t feel like others understand, want to get involved or, more often than not, that we just aren’t deserving.

Even when people who try to comfort you mean well, overdose deaths can elicit some awkward interactions that many people would rather just avoid than deal with, which can drive a survivor deeper into isolation. You might start to feel anxious about, or even fear, social situations where you might have to open up or address the situation with people you’re not wholly comfortable with. That anxiety can turn family members against each other. The fear can make lifelong friends suddenly cold enemies. It doesn’t have to be this way. Even though grief may cause us to say and feel emotions that fade, we can learn to cope, to have compassion and respect for people experiencing this complex loss — including ourselves.

Ways to Cope

Addiction is a devastating disease. If you haven’t experienced it or been through it with family and friends, then it is difficult to understand. Death caused by addiction is even harder to understand. Many times, the shame, guilt, isolation and fear stem from misunderstandings about the illness. When you feel like a failure because you feel you failed to care for your child, parent, friend or loved one, it’s difficult to open up about the complicated grief that accompanies overdose deaths.

Here are a few ways to cope with the stigma:

  • Educating people on the reality of drug addiction and overdose is one way to help people gain a more knowledgeable perspective about the situation. When someone makes a callous or uninformed comment, explain to them the real truth. You can use statistics, anecdotes from other lives, or your own personal story.
  • Have compassion for yourself. When you want to open up but feel hesitant, remind yourself that you have every right to feel whatever you feel — relief, sadness, guilt — and that people can and will surprise you with their empathy and understanding.
  • Drug addiction has been more prevalent in the news. More and more people are beginning to understand that it’s not about weakness or willpower, but about something much deeper than a chemical dependency. The more we can talk about the realities of drug overdose, the more people will begin to have compassion and respect for your complicated grief.

Ultimately, we feel these negative emotions surrounding an overdose-related death because we have been convinced that we — and our loved ones — simply aren’t worthy of grief and mourning like other deaths. However, you are not alone, and your complex emotions are worthy of healing. Even the most reluctant of sharers can find comfort during their grief by connecting with those going through similar experiences. That’s truly the most profound way to heal from grief due to addiction — making human connections.

Complete Article ↪HERE↩!

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There is more than one way to die with dignity

By Ing Wong-Ward

“Who are you here to see?”

On this day, I was at Mount Sinai Hospital, in the oncology ward. The receptionist I usually check in with wasn’t at her desk. I was being greeted by a volunteer. Dark hair, wide eyes and a smile like a child’s doll. High school co-op student, maybe?

I handed over my health card and told her my doctor’s name.

“I’m sorry, I don’t know who she is. What are you here for?”

Her smile widens.

“Because I’m a patient?” I retort.

I know I’m being rude. But it’s an oncology ward. What does she think I’m here for? To discuss the weather? The shortage of wheelchair-accessible parking spaces in the lot?

What I really want to say is, my doctor is a palliative-care specialist. I’m seeing her because I have cancer. I’m preparing for my death.

I don’t look like I have cancer, let alone the incurable kind. I have all my hair. My friends and husband assure me my colour is good. Dressed in my normal clothes and not the pajamas I currently favour, I look reasonably well – for a middle-aged woman who also has spinal muscular atrophy, a congenital neuromuscular condition.

I rely on a motorized wheelchair to get around and need personal support workers to assist me in all aspects of daily living. It’s been this way forever, but now I have colon cancer, and two external abdominal bags to collect various bodily fluids.

This, to put it mildly, complicates things.

My palliative-care doctor is a compassionate young woman who wouldn’t look out of place in a medical drama. She has been guiding me through my own recent hospital drama: I was readmitted to hospital a couple of weeks earlier, for yet another emergency.

I’ve been fighting off a major abdominal abscess for more than a year now. At one point, my abscess was so large, one of my doctors admitted surprise that I was upright. This is what initially led to my cancer diagnosis. A colon biopsy confirmed the cancer was malignant. In October, I was told my cancer was inoperable, despite 28 rounds of radiation.

At least it’s not metastatic. Localized, but nowhere else. For now, anyway. Plus, my surgeon tells me, I likely have years with this cancer. Not months or weeks, like some of his other patients.

The challenge now is the infection associated with the abscess. During this current crisis, antibiotics are working. What my surgeon can’t tell me is when the next infection will hit, or when antibiotics may fail.

Some patients reinfect every month, he tells me. I’ve done well, he adds. I tell him I couldn’t handle being hospitalized every month. He acknowledges I would need to evaluate my quality of life, if this became my reality. In that moment, my decision to seek palliative care early seems the smartest decision I’ve made in a while.

Like most Canadians, I had limited understanding of palliative care before I had cancer. To me, “palliative care” was synonymous with “you are about to die.”

That’s not the case. On my first palliative visit, the doctor explains the word is Latin for “to cloak.” She personally likes that, seeing her role as guide and protector to patients who are coping with the most difficult time of their lives.

I need her guidance. There is no clear path around how to deal with cancer while living with a disability. I’m used to being disabled. It’s my normal. My quality of life up to now has been exceptional, complete with a husband I adore, a sweet, sassy daughter and a brand-new career.

Like everyone else diagnosed with cancer, my life has suddenly imploded. I find myself in this new world, navigating how to continue while knowing the end is coming much sooner than I’d like.

That’s why I’ve sought out palliative care. My own research leads me to studies showing that having a palliative-care expert can help me prolong my quality of life through the management of symptoms, such as pain that I know will likely worsen over time. My family doctor concurs, telling me outright that I need this.

This new relationship has enabled me to talk about my greatest fears. After my conversation with my surgeon, I fear dying slowly of sepsis, waiting for my organs to fail. I’ve agreed to a Do Not Resuscitate order, which ensures I won’t be hooked up to machines in the ICU, prolonging The End.

During this particular admission to hospital and based on what my surgeon has said, my choices seem stark. Down the road, I could die slowly from an infection that will shut down my organs, or sign up for a medically assisted death.

Then, my palliative-care doctor arrives at my bedside. She points out I have bounced back from severe, acute episodes before. She also knows I don’t want an assisted death and takes the time to explain there are options available, such as palliative sedation, a process where I can have large doses of morphine to keep me comfortable. She firmly tells me I am not close to needing this. My goal needs to be focused on getting better and getting home, to my daughter.

As she explains this, I start to relax. She’s given me the window I need to live my life, as compromised as it now is. It is not the life I would have chosen, but it still has meaning. My task now is to figure out what that meaning is. And her task is to help me to define my priorities while maximizing the quality of my life with medical therapies and emotional support.

It’s an interesting time to be thinking of my life as a person who is both disabled and has cancer. Less than two years ago, the federal government enacted a new law enabling Canadians with incurable conditions, whose death is foreseeable and are suffering irremediably, to ask a doctor to end their lives.

It’s been called “dying in dignity,” but for me, that’s not the way I want to go, at the hands of a doctor, wielding a poisoned syringe.

I believe no one with a terminal illness should be forced to endure suffering – but, if there is one lesson for me in the past year, death is not the only way to alleviate suffering. Managing physical suffering feels like traveling a winding road. Some days, it feels never-ending; other days, manageable, almost like the life I had before. Some days are so bad, I’m convinced death really is the only relief, but I’m brought back to reality when I think of what I could miss out on.

My life is definitely smaller now. I doubt I will ever work full-time again. I barely leave my apartment. Thanks to my father’s financial generosity, my husband has been able to take unpaid leave from his work to be with me. The time we spend together is precious. Even in its ordinariness, it is meaningful.

I appreciate the world differently now. It is as though time has slowed for me to see the small details of life, whether it be the softness of my bed sheets or watching snow drift down through my apartment window.

I’m trying to live with dignity, as I always have, despite the very real medical indignities I have been subjected to.

Which is why it dismays me greatly there are continuing attempts to make it easier for people without terminal conditions to ask a doctor to end their life. It dismays me that a lobby organization calling itself Dying With Dignity is not actively lobbying for increased access to palliative and hospice care, or advocating for more community supports for people with disabilities to live as productively as possible. In other words, to live with dignity.

We are all going to die, but before we do, each one of us has a right to a good quality of life, even to the very end. Yet too many Canadians do not have adequate access to palliative and hospice care. The lobbying efforts of those to equalize this are rarely discussed in our media.

I’ve chosen my path, thanks to the help of empathetic doctors and my own advocacy. My hope now is that more Canadians have the right to do the same, without the implied suggestion there is only one real way to die with dignity.

Complete Article ↪HERE↩!

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Facing finality: it’s important to plan for your final days

A recent survey reveals that seniors and their adult children often do not take the necessary steps to plan for their final years of life.

By Cory Fisher

[D]espite the fact that most seniors have very specific ideas regarding how things should be handled when it comes to their care at the end of life, a surprising number have not shared this information with their offspring.

Too often seniors and adult children are eager to avoid the topic and therefore do not take the steps necessary to plan for the final years of life — including getting financial affairs in order and creating plans for care when a senior’s health inevitably begins to decline.

A new survey by Home Instead, Inc. found that while 73 percent of seniors have a written will, only 13 percent have actually made arrangements for long-term care. Additionally, 79 percent of seniors are more comfortable planning for their funerals than planning for when they need full-time care or hospice.

New research reveals it’s the children who feel the most awkward about broaching the subject of a parent’s final wishes. Even as parents approach their final years, adult children still find it hard to accept their parents’ mortality and believe the topic might be upsetting to parents or grandparents.

Yet once the subject has been broached, a 2017 survey of 505 seniors age 75 and over, and 510 adults between the ages of 45 and 69 revealed something quite different. A whopping 88 percent of seniors said discussing plans for their final years made them feel closer to their adult children, and 97 percent of adults who helped with their parents’ planning said it “gave them peace of mind that things would go okay.”

Those end-of-life fears that lead to avoidance only delay the inevitable. In most cases, adult children will be monitoring their parents’ care and the more information they have, the better.

Research, as well as Home Instead Senior Care experts say there are ways to combat those fears. Talk it out, don’t wait for a crisis, put a plan in place, consult experts on end-of-life issues and follow the “40-70 Rule,” which means that if you are at least 40, or your parents are at least 70, it’s time to start about certain senior topics.

Some of the most common fears experienced by seniors, according to research compiled by Home Instead, Inc., include:

  • Fear No. 1: “I hate the thought of having feeding tubes and ventilators keeping me alive.”

What you can do about it: Consider establishing a living will. Living wills detail an individual’s treatment preferences in the event he or she is unable to make those decisions. Many lawyers will prepare a living will as part of an estate planning package.

  • Fear No. 2: “I’m afraid I will end up in a nursing home, and I don’t want to die in a hospital or institution.”

What you can do about it: There are many options for end of life care outside of nursing homes and hospitals. Adult children can help their parents research home care options so the entire family is prepared when the time comes.

  • Fear No. 3: “What if I get dementia and can no longer make my own decisions?”

What you can do about it: It’s wise to have seniors designate a trusted person with power of attorney who will act on their behalf in the event that they are no longer able to advocate for themselves. This will give them peace of mind that their care wishes will be met regardless of their mental acuity.

For adult children, experts suggest the best way to address the end-of-life fears is to communicate clearly with parents about their wishes way in advance. Record specific discussions by taking notes, which could be helpful when making decisions in the future.

For those who feel a great deal of anxiety surrounding this topic, Home Instead offers free resources to encourage seniors and their adult children to talk together about important life plans, which can include end-of-life care, finances, insurance and funeral planning.

A novel component of the free resources offered includes a music generated feature entitled, “Compose Your Life Song.” The light-hearted online exercise, which can be found at http://www.caregiverstress.com/end-of-life-planning/compose-life-song/my-song/, can help families broach difficult subjects more easily.

After completing the activity, seniors are presented with their own customized “song” and accompanying resources that will help them reflect on their personal preparedness during their final years.

The song is a great way to gracefully transition into more serious topics, said Buck Shaw, owner of the Home Instead Senior Care office serving Sacramento, Nevada, Placer and El Dorado counties.

“It’s fun — I’ve done it myself,” he said. “It’s a very basic questionnaire that is a nice blend of topics. It’s so important to talk about these things — I can’t tell you how often I’ve seen families have disagreements when plans aren’t in place. One part of the family thinks grandpa wants one thing, while the other side thinks the opposite.

“It creates an awkward division of the family. I’ve even seen very educated people — doctors and teachers — arguing with relatives who are trying to keep grandpa alive when he was good to go. This can cause rifts in the family that are hard to repair.”

Participants who go online to create their own song respond “yes” or “no” to thought-provoking statements, such as, “I have checked off an item on my bucket list in the past year,” “I frequently visit with people whose company I enjoy,” “I have talked to my family about my end-of-life wishes” and “I have established a will and advanced directives.” This can open the door to deeper, more constructive conversations, said Shaw.

“About 77 percent of adult children think their parents have plans in place, while only 50 percent do,” he said. “In the long run, if we become advocates for seniors, we all win in the end. It’s all about raising awareness and doing the right thing.”

Complete Article ↪HERE↩!