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.
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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.”
‘Consider the Conversation’: A Discussion At Fourth Presbyterian Church
Posted on Thursday, January 24th, 2013 at 6:56 am by Life Matters Media
The acclaimed “Consider the Conversation: A Documentary on a Taboo Subject” was screened at Fourth Presbyterian Church in Chicago on Wednesday, in collaboration with the Chicago End-of-Life Care Coalition.
Directed by longtime friends Terry Kaldhusdal, a fourth grade teacher and filmmaker, and Michael Bernhagen, a hospice advocate, the film showcases interviews with health care professionals, religious leaders and the terminally ill in order to explain the importance of having the freedom to choose one’s end of life preferences. It also highlights the moral dilemmas surrounding the hastening of death, such as stopping eating and drinking, for those suffering and the artificial prolonging of life.
Loretta Downs, the CECC president, thanked the audience for being brave enough to watch such an emotionally evocative film. “Now we are living for years with chronic illnesses that before would have killed us. We think that we will never die, but we are required to talk about end of life,” said Downs, who is also featured in the documentary. “The film has inspired many people to have these conversations.”
The audience seemed to enjoy the film and engaged in a lively conversation afterwards. “I thought it was excellent, said Susan Thompson, 75. “It emphasized being natural in the most difficult moments of death and life.”
Laura Pond, 54, said she did not like the film’s stance on hastened death. “I found it difficult to watch because I have a chronic illness and I thought people in the film were giving up,” she said. “You do not give up. It is not God’s plan.”
Marty Preiss, 60, said she found the film both compelling and engaging. She is planning a similar event for a screening at her church in Chicago’s northern suburbs.
The film has also been well received by health care professionals. “I have never recommended a film on the end of life before. But people deserve to see “Consider the Conversation” because it deepens our passion for life and enriches our lives,” wrote Compassion and Choices’ Barbara Coombs Lee.
“Consider the Conversation” has won multiple awards, including the Award of Excellence in End-of-Life Care from Agrace HospiceCare and the Silver Award of Excellence: Best Documentary or News Special from the Milwaukee Press Club.
Part two: “Consider the Conversation: A Documentary About Unintended Consequences” will be released early next year.
POLST Illinois Moves Forward
Posted on Friday, December 7th, 2012 at 7:35 pm by Life Matters Media
The Physician Orders for Life-Sustaining Treatment (POLST) program, designed to improve the quality of end of life care, is on its way to Illinois. Health care professionals met at Rush University Medical Center Thursday to discuss the form’s development and strategies for raising public awareness.
The Chicago End-of-Life Care Coalition sponsored the discussion led by Julie Goldstein, M.D., a clinical ethicist and palliative care physician at Advocate Illinois Masonic Medical Center.
POLST program forms are more detailed than conventional living wills or other advance directives. They allow patients 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 in-state care settings and direct doctors to provide or withhold life saving treatment in emergency situations.
For instance, an individual may choose to decline resuscitation efforts, but of for artificial nutrition. An individual may choose artificial nutrition with set limits or permanent placement.
“POLST improves on the existing uniform DNR form,” said Goldstein. “POLSTs are medical orders and have to be followed by all medical care providers.” To be valid, a POLST form must be signed by an attending physician.
Loretta Downs, president of the CECC, told LMM that POLST is essentially about enhancing personal liberty at end of life. “For Illinois, accepting the POLST form is a statement encouraging people to take advantage of their liberty regarding end of life decisions. It empowers the individual to make a clear statement about whether or not he or she wants end of life care and what level of treatments.”
The POLST form will be available in early 2013, a version of the IDPH DNR Uniform Advance Directive. Goldstein said it will be most similar to the California POLST. The final form awaits approval from state health officials and it may be “ultra pink.”
Many in attendance left hopeful that the form would help their patients. Kriston Kurelic, a social worker at Passages Hospice, says she is excited about the form’s implementation. “I’m very interested in the changes that will happen,” Kurelic said. “It will be very beneficial to long-term care. It will be beneficial to patients and families.”
Christine Nelson, director of nursing at Manor Care, agrees. “I think anything that helps us assess what people’s wishes are more clearly is helpful,” she said. “The only barrier I see is time being taken to explain the form to patients.”
The task of educating patients will likely fall on individual health care providers. Because it is a physician order, it is intended to be accompanied by a meaningful doctor-patient dialogue. Carol Blendowski, a Rainbow Hospice nurse practitioner, says time is what is required to have such conversations, but thinks patients will ultimately find the POLST easy to navigate. “I can see clearly now,” she said. “This form is user friendly.”
POLST was developed in Oregon in the 1990s, and now 15 states have POLST programs. Twenty-eight states are considering the use of POLST forms.
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