Newswire

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.


Stopping Eating And Drinking To Hasten Death

'Love' By Denise Mayumi via Creative Commons

‘Love’ by Denise Mayumi via Creative Commons

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.”

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Belgium’s Euthanasia For Children Law Sparks Debate

'Holding Hands' Courtesy Creative Commons, Lisa Williams

‘Holding Hands’ Courtesy Creative Commons, Lisa Williams

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.”

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Belgium: Euthanasia For Children Nears Approval

Courtesy WikiMedia Commons

Courtesy WikiMedia Commons

The Belgian Parliament has adopted a controversial bill extending the right to euthanasia to terminally ill children, the Parliament announced Thursday via Twitter.

The bill easily passed the Belgian House of Representatives 86 to 44, following a vote by the country’s Senate in December in support of the measure. The bill is expected to be signed by King Philippe, making Belgium the first country in the world to remove age limits to the practice.

“Our responsibility is to allow everybody to live, but also to die, in dignity,” said Karine Lalieux, a Socialist member of the House of Representatives, according to The Associated Press.

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.

Socialist Senator Philippe Mahoux, sponsor of the country’s 2002 “right to die” legislation, called for the law’s expansion because he said doctors have been illegally helping sick children die. Mahoux, a trained surgeon, called euthanasia “the ultimate gesture of humanity,” according to Agence France-Presse. ”The scandal is illness and the death of children from disease.”

Opponents, including religious leaders and some medical professionals, argue that children are not capable of making such difficult decisions. ”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 last week, according to the BBC.

On Wednesday, 160 pediatricians petitioned lawmakers to postpone the vote arguing the bill is unnecessary. “Pain can be eased nowadays; there’s been huge progress in palliative care,” Nadine Francotte, a cancer specialist in the city of Liege, told AFP.

In 2012, euthanasia accounted for 2 percent of all deaths in Belgium, up 25 percent to nearly 1,400 cases. A terminally ill person may drink a barbiturate-laden syrup, or a doctor can administer the drug through an intravenous tube to induce death.

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.

Euthanasia is banned in the U.S., but physician-assisted suicide, or “Death with Dignity,” is legal in four states: Oregon, Washington, Vermont and Montana.

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DePaul Students Learn To Plan The ‘Good’ Death

depaul

More than 130 DePaul University students braved the Chicago cold to attend “Planning The Good Death,” a lecture that fostered deep discussion about the importance of end of life planning. Presented by the DePaul Humanities Center, the event urged students to “ask what it means to prepare for death and what role such preparation might play in making that death a good death.”

Dr. Julie Goldstein, director of clinical ethics and palliative medicine at Advocate Illinois Masonic Medical Center, said every adult should complete an advance health care directive to ensure their end of life wishes are carried through. Such documents may take the form of a living will, durable power of attorney or do-not-resuscitate order.

“These days, every adult, even those who are 18, should have an advance directive in place,” Goldstein told the students. “I hope they bring these conversations back to their parents, too.”

Goldstein raised the controversial 2005 case of Terri Schiavo to show what could happen to individuals unable to make their own health care decisions. “For Schiavo, it was easier for the parents to challenge the authority of the husband, because he was identified probably first by default law, or by a judge who said he was the guardian,” Goldstein said. “But neither of those carried out what she actually wanted.” It would have been much harder for Schiavo’s parents to challenge her husband if she had an advance directive in place.

“I think discussions about end of life are taboo because we never think we are going to die,” said Erin Scheffler, a 21-year-old majoring in sociology.

Scheffler, who attended the event out of her interest in issues related to mental health, said she hopes to begin completing advance health care directives. “Something could happen to me tomorrow, or next week. I have talked to my family about the DNR, because my mom works at a hospital. I have heard the horror stories of people left helpless at the end.”

The student cast of Other Plays by Andy Kaufman attended the event as a “bonding exercise.” Logan Breitbart, 21, said he seldom thought about issues related to the end of life. “At this point, ‘pull the plug if I become a vegetable’ is such a cliche, so you don’t really think about the ramifications of such a profound statement. Advance care planning is definitely something I need to look into,” he said.

The student cast of  'Other Plays' attended the event out of curiosity

The student cast of ‘Other Plays’ attended the event

Other students said they believe discussions about death and dying are uncommon because they can strike fear and anxiety in many. Twenty-one-year-old James Callahan said he believes such conversations make people uncomfortable because it reflects their mortality. “I don’t know what people think they are holding on to when they push to continue life-sustaining treatments,” he said. “When it comes to me, I want the plug pulled, absolutely.”

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Facing Breast Cancer With Friends

circle of hope

Once a month in Kenosha, WI, a group of 30 women come together to share their fears, struggles and experiences facing breast cancer over dinner and drinks. Founded in 2005, Circle of Hope has helped more than 100 Wisconsin women facing breast cancer through their support groups and financial aid.

Life Matters Media spoke with Circle of Hope President Debbie Misurelli, 57, and Vice President Lisa Castelli, 46, about their experiences working with women facing early and end-stage breast cancer. While family and friends provide essential support for those facing the disease, Castelli says an intimate network of women facing breast cancer fosters a sense of calm and understanding.

How was Circle of Hope founded?

Castelli: In 2005, there was a Kenosha real estate agent in her 30s named Jana Maegaard who was diagnosed with breast cancer. Jana really wanted to do something to give back to other local women facing breast cancer– there were no support groups at the time outside of hospitals.

Jana began to notice a lot of ladies at schools and playgrounds wearing pink bandanas, so she started collecting their names and numbers. Eight of us got together at her home, and we decided to continue to meet once a month. Some of us were just starting treatment, others were ending it. Jana passed away five years ago.

How do you feel when someone says you are “battling” cancer? 

Castelli: We have a lot of ladies in the group that hate the word “survivor” and prefer the word “fighter.” Cancer can’t take away the spirit, cancer can’t take away your heart. We hear it and we’ve said it, but we know it’s a lot more than that. A lot of ladies have passed away, and we see strength to the end.

Misurelli: When you hear “she lost her battle with cancer,” that sounds like she gave up, and that’s not it. Even the doctors will admit when there is nothing else they can do.

How do you deal with the loss of someone in your group?

Castelli: It’s delicate, especially when we know it’s coming– you sort of feel like you’re on a tightrope. It’s also hard for women with the same diagnosis to sit there and watch someone die, because they think, “Why not me?”

When someone does die, and then at the very next meeting new members come in, it is very, very difficult. It takes a lot of prayer, a lot of courage. We tell new members that we will be grieving and dealing with it.

Misurelli: We go to the funerals and show up in full force. I couldn’t go by myself, so Lisa is my rock. Maybe 10 or 20 of us will show up together to show the family how much their loved one meant to us. We still have contact with some of the spouses.

Do men understand the struggles associated with breast cancer? 

Castelli: It is hard for men because they don’t know what to do themselves. They want to protect and make it better, but they can’t. Some spouses can handle the better or worse, others do not and leave. Women are not the same after breast cancer.

Misurelli: When you go to work one day and come home to your wife’s hair falling out in handfuls, it is hard. What is the right thing to say? If you tell her to get a wig it comes across bad.

There should be a support group for men, too.

Are conversations about the end of life taboo?

Castelli: We are open to those conversations, because we are dealing with it every day. Those conversations are taboo for the friends and family of those dealing with breast cancer, because they really don’t know what to say. If you know someone who has breast cancer, help them find a support group. Women should not face this alone.

Misurelli: For many women with breast cancer, once treatment is over people expect them to be totally healed. It’s not like that, there are still body-image issues and maybe some medications. People expect you to be back to normal, but it’s never really over.

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daniel-gaitanDaniel Gaitan

Daniel Gaitan serves as a content producer...More