The Life Matters Media Newswire aims to serve as a comprehensive portal of all news related to end of life decision making and care. We aggregate stories from other media outlets in one place- here, where you can access them easily. We also strive to produce original content covering stories we feel are receiving scant attention.
Award-winning journalist and bestselling memoirist Katy Butler wants more Americans to plan for and experience a “good” death.
“We live in a culture that doesn’t want to talk about death at all,” Butler told the crowd of patients, medical students and activists. “We need to start getting braver and more honest about it.”
After witnessing her father’s aggressive, and often unnecessary, end of life treatments, Butler vowed to help ensure that her mother would experience a more peaceful death. At 79, her father, Jeffrey, suffered a severe stroke. As his condition worsened, doctors outfitted him with a pacemaker, a procedure Butler said artificially prolonged his slide into dementia.
She devotes a portion of her memoir to her mother’s struggle.
“On the phone with my brothers and me that winter, she cried. She loved my father. She’d vowed to be with him in sickness and in health, she told us— and who was she to think they’d escape the sickness part? He’d taken care of her for 50 years, and now it was her turn. But in ways we were only beginning to fathom, my father was no longer her husband, and she was no longer his wife,” she writes. “At 77, she had become one of 29 million unpaid, politically powerless and culturally invisible family caregivers— 9 percent of the United States population— who help take care of someone over 74.”
Her mother, Valerie, would later die in a quiet hospital room in Connecticut. She was fully conscious until the end, and she was not “plugged into machines” in the intensive care unit.
“Both my parents lived really good lives, and they hoped to die really good deaths. One of them succeeded, one of them failed,” she said. “Think about what is a good death for you. How would you like to die? Whatever the good death means to you, we all share something in common: we live in a country that doesn’t want to talk about death.”
According to Butler, advances in modern medical technologies coupled with a medical system that rewards doctors for providing more treatments have helped make death and dying taboo.
“Can you imagine the title of the bestselling book from 1451? Translated into all the European languages, the Ars Moriendi, or The Art of Dying, was a script for the death bed,” she said. “It’s full of very understandable, human illustrations … the most important person in these illustrations is the person dying, and their state of mind. Death is depicted as a very spiritual and important event.”
Today, about 20 percent of seriously ill Americans die in the intensive care unit, and 30 percent cycle through it in the last month of life.
“The problem did not start three days before the family showed up in the intensive care unit. The problem started five to 10 years before,” she added. “We’ve got to start talking about this in a much more subtle, nuanced way much earlier.”
Sheryl Brown, a clinical coordinator for the intensive care unit with Northshore University HealthSystem in Evanston, Ill., said she was inspired by Butler’s presentation.
“I think that she brings that personal experience that has so much weight. When people talk academically about matters of death and dying, it doesn’t touch the human soul,” she said. “A sense of passion about this will move us forward.”
Alyssa Foll, a chaplain with Adventist Midwest Health, said she believes conversations about end of life-related issues are taboo. “Like the Victorians in England avoided sex, we avoid end of life conversations,” she said. “I think we live in a youth-obsessed culture, but we also rely on technology. People think technology will save them and prolong their lives, but it won’t.”
Award-winning writer Uma Girish spoke with Life Matters Media about her newest book, Losing Amma. Finding Home, a reflection on love and light at the end of life. Girish, who hosts the radio program The Grammar of Grief, said she was moved by the recent death of her mother to record her thoughts and feelings about the topic.
What inspired you to write Losing Amma. Finding Home?
It will be officially launched June 18th, which also happens to be my mother’s birthday. This book came about because of my immense grief from losing my mother on Jan. 27, 2009, a mere eight months after moving from India to the U.S.
I was not only navigating a new country and culture, but I was also navigating the lonely terrain of grief. I had to write about it as a way to help me understand what loss means, what grief is, and why we are meant to live on this earth. Is there life beyond struggle and survival? I was in a deep existential ache, and I needed to go on a journey to figure out the answers to these questions.
Was it difficult to write?
Yes, and no. I knew that this book had a definite purpose, and that I was meant to birth it. I believe it will inspire many, many people, because it talks about how to move beyond the pain of grief, and then go on to find joy. But there were days I would write a scene and cry so much that I had to go and walk away.
The goal of the book drove me forward, it fueled me. I revisited all my painful memories of my mother being diagnosed with cancer, her journey and her eventual passing.
You write about the soul, why?
I wasn’t really clear about my own beliefs when my mother passed away. I knew there was a god, but I had never felt connected to the religious side of things. It felt constricting, it felt unreal, because I didn’t subscribe to the idea of a vengeful, punishing god. I had my own beliefs and ideas.
When my mother passed, I spent some time being really angry with god. I had put all my trust and faith into this big power of the universe, and I believed my mother would be part of the surviving statistic. When my hopes were dashed, my faith suffered, too.
Then I got really curious about why we are here and why we die. I thought that there has to be more than this— my heart kept saying it. I went on a spiritual odyssey, and I worked with mentors, meditated, prayed and then came to believe there is more to life than what we are seeing.
I believe the soul leaves the body, for the body is just a container for the soul. I believe that we come back to finish the unfinished lessons of our life, and we keep evolving. It is comforting, because death is not an ending, you just begin another chapter. Birth and death are kind of cyclical. The book really is a huge gift from my mom.
What advice would you give to someone facing the loss of a loved one?
Most of us, when we lose someone we love, go into the depths of grief. That is completely normal, and it’s very important to embrace your feelings and not run away from them. I think our culture teaches us that grief is weak, and that it’s not okay to be vulnerable. But grief has a way of opening you up, and only when you let your heart open can the light shine in. Then you can ask, “how is this death relevant to my journey?” Try to connect to the person you lost.
Do you fear death?
I’m not going to say that I have it all conquered, but I am still a little afraid of how I might die, like I think most people are. Is it going to be an illness, a car crash, will I be with a loved one? I have those fears, I just don’t dwell on them. What I do know is that once I transition, I will be going to a better place.
By Walter D. Woods, Vice President, AARP Foundation and Michael Adams, Executive Director, SAGE
Recent news stories on a study presented at the annual conference of the American Association for the Advancement of Science (AAAS) have called dramatic attention to the dangerous health effects of social isolation on older people. Feeling lonely increases the risk of premature death.
This is not news to the AARP Foundation. For years, the Foundation has targeted the problem of isolation among people 50 and older while supporting efforts to address social isolation through its own initiatives and through grant making. One of those organizations is SAGE (Services & Advocacy for Gay, Lesbian, Bisexual and Transgender Elders). This partnership allows us to improve health and wellness among older adults by reducing isolation.
Isolation is a defining experience for many of the LGBT older adults that SAGE serves. This is a result of a dynamic similar to what AARP Foundation sees in much of its work – the thinning of family networks and social supports. These trends are particularly pronounced in SAGE’s work, given that LGBT older people are four times less likely to be parents and twice as likely to be single.
The question is what can be done to counteract this public health threat. The collective experiences of AARP Foundation and SAGE are particularly instructive. One example can be found in the inspiring graduation of the first group of older adults to take part in AARP Foundation’s Connecting to Community program, which uses trained volunteers – many of them also part of the 50+ crowd – to teach low-income seniors to use tablets and other mobile devices so they may stay connected to friends and family. The Foundation’s supporting grant offers an added bonus by providing tablets and Internet access to participants.
The same sense of energy and empowerment can be found in SAGE Story, a digital storytelling initiative that seeks to break isolation among LGBT older adults. SAGE Story helps isolated older people connect with each other and the community by sharing their stories in online media. The transformational power of the process is evident in the words of SAGE Story participants, who talk proudly of “introducing the world to who we are as LGBT people” and relish the opportunity to “grow from within myself, with imagination” and “open the door to yet another closet.”
The beaming sense of achievement, the stories of renewing old connections and making new ones, the sheer joy at feeling a part of life again – it all drives home how important this work is. The findings of this recently reported AAAS study only confirm how vital and literally life-saving programs like these can be.
This isn’t all just about helping those for whom loneliness is a distinct health risk. What really inspires us is that we are helping ourselves and our communities at the same time.
Isolation is a defining experience for many of the LGBT older adults
It’s not just that older adults need to stay connected for their own sakes, but also that we need older adults to stay connected. Our communities need their leadership and engagement, friends and families need their wisdom and support, and our workplaces need their dedication and reliability.
We encourage you to do what you can in your own community, by volunteering at a local senior center, perhaps. Or with a visitor service that provides homebound elders with meals or the opportunity for cherished companionship. Or by engaging an older person as a mentor or teacher. Just as importantly, we also urge you to take part in the mind shift we need as a culture to better recognize the value our older generations offer. This way, we can begin to envision and create a society that is less isolating and more inclusive.
When you make this life-changing shift, you’re not just doing it for isolated older people. You’re doing it for all of us.
Seriously ill patients near the end of life who stop eating and drinking make an ethical and legal decision to hasten death, says Craig Klugman, chair of the department of health sciences at DePaul University in Chicago.
Voluntarily stopping eating and drinking (VSED) is legal in every state for the terminally ill. According to Klugman, seriously ill adults of sound mind should have the freedom to make decisions about their care at the end of life.
“While assisted suicide is only legal in a small number of states, rational suicide is legal everywhere,” Klugman told Life Matters Media. “This is not the same as removing artificial nutrition or a hydration feeding tube; a person stops ingesting food and liquid by mouth.”
Klugman said the process is fairly painless, and after a couple days the patient will cease to feel hunger pains and become drowsy. “We know this from studies of individuals on hunger strikes,” he added. “Choosing not to eat or drink does not mean a person rejects comfort care such as pain control, chewing on ice chips, and moisturizing the lips, skin and other tissues that can be uncomfortable as they dry out.” Patients die of dehydration, not starvation.
Loretta Downs, past president of the Chicago End-of-Life Care Coalition and founder of Chrysalis End-of-Life Inspirations, maintains that stopping eating and drinking is a natural behavior. “Every living thing stops taking in nutrition near the end– animals, plants, people. A person who is dying will often lose their appetite,” she said. “It is an important behavior because the patient still has control.”
Downs urges families of dying patients to remember that better care is often less care. “Loved ones often provide comfort food and drink during life, but at the end patients may become nauseous from the smell of food,” she said.
According to a 2003 study published in the New England Journal of Medicine, researchers determined VSED often results in “good” deaths. According to the survey of more than 300 Oregon hospice nurses, most deaths from voluntary refusal of food and fluids were peaceful, with little suffering. Only 8 percent of patients were thought to have had a poor quality of death. One in eight patients whose outcome was known resumed eating and drinking, most often because of thirst or pressure from family members.
Counselors with Colorado-based Compassion & Choices, an advocacy group working to enhance patient rights at the end of life, facilitate discussions about VSED with willing patients across the country.
“The patient needs to be clear about what he or she wants, and let the family know. The process can be peaceful and comfortable, especially if hospice is on board,” said Dr. Judy Neall, medical director of Compassion & Choices’ end of life consultation program. Neall said about 20 percent of patients Compassion & Choices counsels each year about hastening death are VSED patients.
“What can make patients feel uncomfortable during the process is if family or friends provide some food or water, because then the body doesn’t know what to do,” Neall offered.
The simplicity of VSED helps discourage patients from attempting illegal, and more dangerous, efforts that quicken death, Klugman added. “When chosen with a support system in place, VSED can be a responsible, rational, compassionate, and painless way to take control of one’s end of life that does not involve extreme measures, like guns or poisons, or run the risk of implicating someone else in an illegal activity.”
As Belgium becomes the first country in the world to remove all age restrictions to euthanasia, health care experts and ethicists are debating whether or not terminally ill children should ever be allowed access to life-ending drugs.
Under amendments to the country’s 2002 euthanasia law, a child of any age may be helped to die under strict conditions: the child must be terminally ill, close to death and suffering a great amount of pain. Counseling by doctors and a psychiatrist or psychologist is required, as is approval by parents or guardians. The child must possess the “capacity of discernment and be conscious” of requesting death.
But the law– expected to soon be signed by King Philippe– has faced strong opposition from both religious conservatives and physicians who argue that euthanasia is unnecessary, because modern medical technologies help minimize suffering.
“The law says adolescents cannot make important decisions on economic or emotional issues, but suddenly they’ve become able to decide that someone should make them die,” Brussels Archbishop Andre-Joseph Leonard said at a prayer vigil, according to the BBC.
I don’t think euthanasia is for every society and every place in the world, but I’m not willing to say it is always wrong.
Craig M. Klugman, a professor of bioethics at DePaul University in Chicago, said discussions about euthanasia are emotional because they touch upon an individual’s religious, political or medical beliefs. “The sanctity of life argument is a very personal one. Different religions have different views on what makes a life sacred, and in some cultures, a child is not a born human being until a month after its birth, because the infant mortality rates are so high. In others, life starts at the moment of conception,” he said.
But Klugman points to the sickest of children, whose entire existence is pain. “Some people might say we can control pain, but it is really difficult for an infant or newborn to tell us what they want, all they can do is scream and cry. But, they also cannot provide consent.”
Loving parents who choose to end the life of their suffering child could be viewed as morally courageous, while others would call them cowardly, Klugman said. “I don’t think euthanasia is for every society and every place in the world, but I’m not willing to say it is always wrong. If the parents determine in conjunction with the physician that it is a life whose quality is so poor that it is not worth living, then yes, I would support their freedom to make this decision.”
According to Klugman, the argument that legalized euthanasia will lead to “death panels” or eugenics is false. “Slippery slope arguments are considered a fallacy, because they assume we don’t have the ability to say ‘when,’” he said. “They assume that we don’t have any critical thinking or acting skills, and they have not often been proven true.”
Eric Price, M.Div., a pediatric care chaplain, argues that some seriously ill children should be granted equal access to euthanasia if they are suffering. “I don’t think we need to parse children into a different category,” he said. “It will always feel worse when we are talking about sick or terminally ill children. The suffering of a 7-year-old is no different than the suffering of a 70-year-old.”
However, Jean Kosova, a registered nurse and ethicist practicing in Chicago, said she believes palliative medicine should be viewed as a practical alternative to euthanasia. “We should be focusing on pain relief, and not allowing people to get to the point where they feel any comfort is hopeless,” she said. “But, working as a nurse, I have seen a lot of people in pain, even with the best medicines.”
Kosova’s concerns are with those children under 12. “It would be difficult to say that a child under 12 would be able to decide in the ways that we would hope an adult making these kind of decisions would be able to,” she said.
Similarly, Dr. Andrew Bonwit, an assistant professor of pediatrics with Loyola University, maintains euthanasia is an unnecessary practice. “Let’s redirect the goals of care when patients are terminal and help families come to terms,” he said. “We should make good use of every pain control measure available, including terminal sedation.”
Bonwit’s experiences have led him to conclude that young children are incapable of making difficult end of life decisions for themselves. “I would be very leery of letting children under 12 years of age choose euthanasia, just as I would be very leery of letting children under 12 choose for their goals of care to be redirected,” he said. “Asking a child to make this decision is something I would have difficulty with, but I also don’t practice in Belgium.”
Belgium is one of a handful of European countries where euthanasia is legal. The Netherlands legalized euthanasia in 2002, even allowing it in some cases for seriously ill minors 12 and older. Luxembourg allows euthanasia for adults; Switzerland allows doctors to help patients die in some circumstances. The practice is banned in the U.S., but physician-assisted suicide, or “Death with Dignity,” is legal in four states: Oregon, Washington, Vermont and Montana.
“Euthanasia will never come to the U.S., hands down,” Klugman said, citing history. “A lot of World War II was about euthanasia, the Nazi experiments, the Japanese experiments, even the U.S. experiments that were done without consent. A lot of our medical ethics and social norms are based on those experiences.”
- Advance Care Planning
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- Reuters Health: LMM Reports
- Voices in Bioethics: LMM Commentary
- Cartoonist Roz Chast Takes On Eldercare
- Medicare Revises Hospice Drug Policy, Local Providers Relieved
- Musicians On Call Bring Music For The Soul To Patients’ Beds
- “Can’t We Talk About Something More Pleasant”: The Role Of Graphic Memoir In Medical Decision-Making
- Nursing: A Vital Role In End Of Life Care
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Daniel Gaitan serves as a content producer...More