Award-Winning Author Katy Butler Coming To Chicago
Posted on Thursday, June 12th, 2014 at 1:01 pm by lifemediamatters
In collaboration with the Chicago End-of-Life Care Coalition, Life Matters Media will host award-winning journalist and author Katy Butler at Loyola University in Chicago on June 19. Butler will offer reflections on her best-selling memoir Knocking On Heaven’s Door, a personal examination of how medical technology is often used in ways that cause unnecessary suffering at the end of life for millions of Americans.
Butler spoke with LMM about her inspirations and experiences behind the book’s creation.
Are you surprised by the book’s success?
What most surprised me is the positive response from within American medicine, because the book really is a sharp critique of where we have drifted to with end of life practices in our medical system.
I didn’t expect to be invited to give grand rounds, and it has been a really amazing experience. I have also noticed a growing counter-culture in medicine– particularly from the palliative care doctors, hospice providers and primary care physicians– people who really want to see a change.
People know that something is wrong and see the suffering, or they have a family member that goes through this experience and realize that even though they are doctors and nurses, they still can’t navigate the system.
Do you ever receive letters from readers?
Sometimes two or three letters a day. I feel validated, and it makes it clear to me that what I am saying is becoming kind-of mainstream. Many, many letters from people facing an ill-advised late-life operation.
I have also noticed more stories of “blue skying” in letters. That’s when doctors tell you about a treatment’s advantages, and how it could work out really well- but they never talk about risks.
What does “good” end of life care look like to you?
To me, I think the ideal for most people is still the ideal of the Victorian age: you die at home, surrounded by friends and family, with pain controlled and with meaningful interactions with loved ones to help leave them better off.
That is not what we see in the U.S. Instead, one-fifth die in intensive care, and 30 percent cycle though intensive care in the last month of life. That leaves families traumatized.
What I have come to realize since I finished the book is that I do not think of good end of life care as being separate from good medical care for the aging. Instead, good end of life care should be a continuum- a shift from thinking of medicine’s most important role as maximizing longevity or curing people.
What would you say to a doctor who maintains that he or she has the responsibility to prolong life at all costs?
If you only believe in making your patient survive as long as possible, there will be a time when you feel like a failure. Every patient will die. But you can widen the lens and realize that you can always do something to relieve suffering and support the patient’s family.
Are you excited to present in Chicago?
This will be the first time I will be presenting to an end of life coalition, people who are really up on these issues- more so than other medical professionals. I want to devote some time to language. The end of life improvement movement needs a lot of help with language, because a lot of the language of medicine is still full of euphemism.
For example, “goals of care” is a term within medicine to describe the shift from all-out “let’s save their lives” to “let’s minimize suffering.” But to a lay person, what the hell does “goals of care” even mean? The word “care” is completely overused.
Stopping Eating And Drinking To Hasten Death
Posted on Thursday, April 17th, 2014 at 8:05 am by lifemediamatters
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.”
Chicago End-of-Life Care Coalition Hosts Fall Benefit
Posted on Wednesday, November 6th, 2013 at 9:02 am by lifemediamatters
More than 130 medical professionals, storytellers and patient advocates attended the Chicago End-of-Life Care Coalition’s fall benefit, an effort that raised funds supporting the CECC’s educational programming throughout the Chicago area. The evening, “Final Chapters: An Evening of Storytelling,” was presented by Chicago’s professional story-sharing group, 2nd Story.
At Revolution Brewery in Chicago’s Logan Square neighborhood, a handful of storytellers narrated their experiences in facing terminal diagnoses and the loss of loved ones. “How many of us have run into a friend or colleague who recently lost a loved one and then not known what to say?” asked Lucinda Gryzenia, the CECC’s treasurer and coordinator of the event. “We seem to have lost the language to talk about death, and we seem to have forgotten how to listen to them. Our hope is that hearing stories tonight will make people more comfortable sharing their own stories of loss- sharing a second story out there.”
The organization’s board members said they were delighted by the turnout. “I actually started this organization 13 years ago, and I don’t know most of the people here- which is a good thing,” said Julie Goldstein, M.D., past president of the CECC.
Storyteller Fred Sasaki recounted his father’s quirks and final moments. “My father saved everything: placemats, nicknacks, empty cans of Axe deodorant, even my old gym clothes which he wore- frugal as he was,” he said.
In May, Sasaki’s 80 year-old father choked to death on a piece of steak at his favorite restaurant, Yoshi’s Cafe in Chicago. “I can’t help but talk about my dead dad. The sadness sneaks up on me — keeps me company — so I laugh at it as much as I can, and tell stories or make things that confront it as directly as possible,” he told Life Matters Media. “He liked his meat ‘nice & juicy,’ which I think also describes his life. That was a famous saying of his, and that’s how he raved about the very dish he ate time and again until it was his last meal.”
Sasaki said he was happy to share the gift his father gave to him: a lifetime of stories. “He gave me so many great stories during his whole life, and I think this story was the kicker, no pun intended,” he said.
LMM co-founders Randi Belisomo and Mary F. Mulcahy, M.D., are board members of the CECC.
More from Life Matters Media
Chicago-End-Of-Life Care Coalition Plans Fall Benefit
Posted on Wednesday, October 9th, 2013 at 11:03 am by lifemediamatters
The Chicago End-of-Life Care Coalition is hosting “Final Chapters: An Evening of Storytelling,” with Chicago-based story-sharing group 2nd Story on November 3 as part of the organization’s fundraising efforts.
Lucinda Gryzenia, a CECC board member organizing the benefit, said storytelling will be incorporated into the evening because dialogue about death and dying is part of the CECC mission.”I think many of us have had an experience where we didn’t know what to say to a friend or colleague who has lost a loved one – it’s almost as if we no longer have the language to talk about death,” Gryzenia said. “Hearing other people’s stories is one way to reintroduce this topic in a culture where death is not openly discussed.”
2nd Story is helping to develop the program and provide stories. “Though the stories have moments of sadness and loss, they are also full of humor and levity,” Gryzenia said. “As with any human experience, death is not comprised of a single emotion. With the sadness, there is often joy and celebration and laughter, too.”
Fred Sasaki spoke to LMM about why he is choosing to speak about his recently deceased father at the benefit:
“I can’t help but talk about my dead dad. The sadness sneaks up on me—keeps me company—so I laugh at it as much as I can, and tell stories or make things that confront it as directly as possible. My father choked to death on a piece of steak at his favorite place. He liked his meat ‘nice & juicy,’ which I think also describes his life. That was a famous saying of his, and that’s how he raved about the very dish he ate time and again until it was his last meal. So I made “nice & juicy” buttons with my good pals at the Busy Beaver Button Co. to commemorate him.”
Sasaki said he had notes prepared for this story even before the CECC approached him. “When his death comes up with friends, I am always startled when they ask, ‘Is it OK to talk about this?’ I just feel like, ‘jeez, please, let’s talk about it,’ ” he said.
Local advocacy groups, advance care planning services and care providers are sponsoring the benefit, including Family Home Health Services and Centered Hospice, the Biological Resource Center of Illinois, Chrysalis End-of-Life Inspirations, Elements Cremation Company and Rainbow Hospice and Palliative Care.
The benefit will take place Nov. 3 from 4 to 7 p.m. at Revolution Brewing, 2323 N. Milwaukee, Chicago. Tickets are $50 and include food and open bar. Gryzenia said all proceeds from the benefit will support CECC’s mission to empower the Chicago community to request and receive quality, comprehensive care near end of life.
Tickets can be purchased here.
POLST Form Presented At Northwestern Memorial
Posted on Thursday, May 2nd, 2013 at 3:12 pm by Life Matters Media
“The Illinois POLST form is a step in the right direction,” said Mary F. Mulcahy, a co-founder of Life Matters Media and practicing oncologist at Northwestern University, while lecturing physicians about the form Thursday at Northwestern Memorial Hospital.
In March, the Illinois POLST form was released to the public, an effort headed by the POLST Paradigm and the Chicago End-of-Life Care Coalition. This update to the Illinois DNR advance directive aims to improve the quality of life for patients at end of life.
POLSTs, Physicians Orders for Life Sustaining Treatment, are more detailed than conventional living wills and advance directives. These forms give patients the freedom to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. Such forms are intended for patients in their last year of life, and they can follow patients across state care settings and direct doctors to provide or withhold lifesaving treatments.
The form should be adjusted over time to fit each patient’s prognosis. “This is not a one-time thing, as patients progress the form can change,” Mulcahy said. “There should be shared decision-making between physicians and patients.” To be valid, the form must be signed by the attending physician.
In the U.S., the average patient visits the hospital more than 30 times and meets nine different physicians during the last six months of life. These patients could benefit from having their medical wishes written down and on hand; the convenience helps cut through the chaos and confusion prevalent in care settings.
POLST was developed in Oregon in the 1990s, and now 14 states have POLST programs. Twenty-eight states are considering the use of such forms.
“Hopefully this form will change the culture and get people talking and preparing for the end of life,” Mulcahy said.
Palliative care expert Andrew Thurston, M.D., agreed. “I think this is great. My hope for the POLST form is that it will clarify patients’ wishes for their end of life care, and that it helps doctors more effectively communicate with their patients,” said Thurston. “We need more open discussion, and with easier language, this form helps.”
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