Tagged: Chicago

May 21, 2013

Illinois Senate approves nation’s strictest medical marijuana law

In what is being called the strictest medical marijuana law in the nation, Illinois lawmakers have agreed to legalize the drug for some terminally ill patients.

Only physicians with existing relationships with certain patients could prescribe the drug, and patient background checks are mandatory. Patients would not be allowed to grow their own marijuana or use the drug around minors or in public. “What this would set up is a four-year trial program for patients who have an established relationship with a doctor and who can demonstrate that they need this to ease symptoms and take them out of pain,” WGN-TV reports.

The bill also sets a 2.5 ounce limit per patient per purchase from 60 state regulated dispensaries. Illinois will license about 20 growers.

“This bill is filled with walls to keep this limited,” said Democratic Sen. Bill Haine, The Chicago Tribune reports.

The bill now heads to Gov. Pat Quinn, who has remained tight- lipped about whether he will sign the bill into law, saying only that he is “open minded” about the issue. Lt. Gov. Sheila Simon, a former prosecutor, said that after meeting with patients, she favored the plan, The Associated Press reports.

“We are embarking here on a way to achieve relief, compassionate relief, consistent with the law (with) a system which avoids abuse,” Haine said. “It’s the tightest, most controlled legislative initiative in the United State related to medical cannabis.” The Senate vote was 35-21, with five more than needed for passage.

“At the end of the day, we’re talking about a plant,” said Sen. William Delgado, a Democrat from Chicago.

But not all lawmakers are pleased with the legislation. ”For every touching story that we have heard about the benefits of those in pain, I remind you today that there are a thousand times more parents who will never be relieved from the pain of losing a child due to addiction, which in many cases has started with the very illegal, FDA-unapproved, addiction-forming drug you are asking us to make a normal part of our communities,” said Republican Sen. Kyle McCarter before the vote. His daughter died in 2006 from a drug overdose.

According to the bill, “Modern medical research has confirmed the beneficial uses of cannabis in treating or alleviating the pain, nausea, and other symptoms associated with a variety of debilitating medical conditions, including cancer, multiple sclerosis, and HIV/AIDS,” citing a 1999 study published by the National Academy of Sciences’ Institute of Medicine.

“Medical marijuana works really well for hospice patients,” said Dr. Matthew R. Sorenson, an associate professor at DePaul University’s School of Nursing. “Based off my research, I think this type of bill has a lot of potential. Marijuana has a lot of benefits for other patients, especially for those suffering from MS or chronic nausea.”

Helping Chicago’s Chinese American senior community

Many Chinese American seniors in Chicago suffer psychological distress, physical limitations and financial hardships, according to The Pine Report, a new study about the health and well-being of older adults.

The Chinese American Service League, a nonprofit providing in-home aid and day services to more than 900 Chicago seniors, partnered with Rush University Medical Center for the report. From 2010 to 2013, researchers conducted face-to-face interviews with more than 3,000 seniors between 60 to 105 years old.

“Seniors are our biggest focus,” said CASL President Bernarda Wong, who helped form the organization 34 years ago with her friend and colleague, Esther Wong.

More than 75 percent of the community served at the CASL speaks and reads Chinese only at home, according to the report. Another 20 percent prefers Chinese. The league devotes resources to new immigrants who do not understand English. ”Sometimes the elderly come in with federal documents and mail they cannot understand, so we help them,” said Bernarda Wong.

More than half of the community’s seniors suffer from one or more limitations to carrying out instrumental activities of daily life, such as managing money, preparing meals or housework. ”We train volunteers to do household chores and go into the homes of the seniors” Bernarda Wong said. About two-thirds of the seniors served suffer from more than one chronic illness.

But despite the league’s vast assistance to thousands of Chinese Americans, many of them still sidestep discussions about end of life and advance care planning, said Debra Chow, an elderly service social worker with the nonprofit’s in-home care services. “It is too taboo for them. End of life is something very scary to all of us.”

“That is not a topic that we have touched on a large scale,” Bernarda Wong said, although noting the growing need for such discussions. “We are eager to work with Life Matters Media, to plan a seminar and allow our clients to ask questions and soak in information,” Chow said.

“Many seniors do not want to bother their families, so they keep it to themselves,” Bernarda Wong said.

POLST form presented at Northwestern Memorial, a seminar from LMM co-founder Mary F. Mulcahy, M.D.

Image: Mulcahy speaking to a group of physicians at Northwestern Memorial Hospital

“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.”

More about POLST

Washington POLST form: A new bill aims to close loophole

Illinois POLST form released to public

How POLST forms clarify wishes: Three scenarios

Being a friend to someone sick: Advice from author Letty Cottin Pogrebin

Empathy + action = kindness

Feminist writer Letty Cottin Pogrebin discussed her new book, at Chicago’s Tribune Tower Monday, as part of the Printer’s Row literary series.

Pogrebin, a breast cancer survivor, spent most of her presentation telling the emotionally-charged room of fans, caregivers and journalists what not to say or do when friends first learn of a serious or terminal diagnosis.

“The thing that bothered me the most was the gossip,” Pogrebin said, recounting her own diagnosis at age 70.

Upon learning of her cancer, Pogrebin told only her family and 12 “uber-pals.” Humans have concentric circles of intimacy, Pogrebin said, and she told only those she completely trusted.

However, word of her diagnosis eventually reached Pogrebin’s outer circle of friends and acquaintances. Someone let the secret slip.

Pogrebin soon became inundated with concerned calls from acquaintances and colleagues. With each conversation, Pogrebin felt forced to once again explain her diagnosis, and in turn, she relived painful emotions. ”My advice: Tell everyone so you can tell them all at once.” If she could rewind and do it a different way, Pogrebin would have sent a mass email to both explain her diagnosis and ask not to be disturbed.

Furthermore, Pogrebin insisted these phrases should never be uttered to a sick friend:

“Oh my God!”

“How are you?”

“You look great!”

“It’s God’s plan.”

These phrases, she said, can sound both fake and cliche. “Do you really want to know how I am? Did I not look good before?” Pogrebin laughed.

Instead, she advised that it may be more prudent to say something such like, “I’m so sad for you” or “I will be here for you, the moment you need it, and I mean it.”

Sometimes, Pogrebin said, family and friends visit just to make themselves feel better. “But what about the patient?” The sick person has to entertain the guests, get dressed, explain their most traumatic moments, and wonder if the person really even cares to know the full story. She suggested friends call before a visit, or plan a future date for dinner- once the patient starts feeling better.

Read the Chicago Tribune’s review of ”How to be a Friend to a Friend Who’s Sick”

More from the Life Matters Media Newswire:

Keeping the dead among us

Life Matters Media participates in “Great Challenges”: Caregiver crises

Life Matters Media participates in “Great Challenges”: End of Life Care

March 22, 2013

As Americans live longer, organ donations suffer

As Americans are living longer than ever, many elderly would-be organ donors are unable to donate upon their death, according to analysis from executives of Gift of Hope, an organ donation organization in Illinois.

As Gift of Hope does not accept organs from those older than 85, with certain cancers, HIV or hepatitis B, many in need of multiple organs are struggling to get them. Although the number of living donors has remained steady over time, the number of donors actually able to donate is shrinking. Therefore, an average 65-year-old in need of a liver and kidney waits much longer for those organs.

“What we’re seeing is more people becoming sicker and getting less health care,” Eric Price, a donation specialist with Gift of Hope told LMM. “Because there is a static number of people donating, there are less organs coming from them.” Price also noted an increase in diabetes and cancer in would-be donors.

The biggest obstacle donation specialists face is finding the best time to request organs from grieving families. Specialists typically make this inquiry in the delicate moments before or after a potential donor’s death.

“There is no good time to ask this question,” Price said. “Families don’t want us coming to them in the hospital asking for their loved one’s organs.” But hospitals have an obligation to notify Gift of Hope of every pending death within a facility, or the institution risks losing Medicare reimbursements. If the individual on the verge of death meets the specifications of Gift of Hope, a donation specialist heads to the hospital immediately.

Sometimes, families are reluctant to donate because they hold out hope for a recovery, Price said. Poor doctor-family communication is another reason why more are not organ donors. “So many doctors do a horrible job of explaining death to families in general, but especially brain death,” Price explained. “I’ve been yelled at and even swung at once when speaking to a family about donating their loved one’s organs.”

A sense of urgency pervades organizations like Gift of Hope. There exists a small time period in which vital organs can be harvested, because they require oxygen and nutrients to survive. It is also difficult to find donors, as only two percent of deaths are eligible for donation. An eligible donor must have died a “brain death” within a hospital (like from a stroke) or the patient’s family has decided to withdraw life-saving support.

Deaths in hospice facilities or at home do not qualify, because organs cannot be harvested if not ventilated properly.

Meanwhile, the transplant waiting list keeps growing. A patient awaiting a kidney transplant in Illinois typically receives one after about five years. There are more than 5,000 people waiting for organs in Illinois. Nationally, that number is more than 100,000.

Gift of Hope executives acknowledge the emotional nature of their work and urge families to think of the positives of organ donation.

“After a family donates, we keep in touch with them,” said Karen Cameron, the Clinical Training Coordinator at Gift of Hope. They connect willing organ recipients and the donor’s family “to help show them the impact of their gift.”

More than five million people have signed up to be donors in Illinois, and more than 70 percent of those whom Gift of Hope approach agree to donation.

Learn more from the Life Matters Media Newswire:

Find out what goes on within your local hospital

GSN’s David Goldhill: “American health care killed my father”

Don Berwick on the ‘rhetorical nonsense’ of ‘death panels’: An interview with LMM

January 24, 2013

“Consider the Conversation”: A discussion at Fourth Presbyterian Church

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.”

Downs acts out planning an advance care directive after film — Downs acts out planning an advance care directive with her colleague Daryl Isenberg, Ph.D., after the film for audience

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.

Learn more from the Life Matters Media Newswire:

Psychological responses to end of life

The Breakers offers advice for caring for elderly parents

January 18, 2013

The Breakers offers advice for caring for elderly parents

A panel of health care and financial experts provided end of life planning advice to a packed room of seniors at The Breakers at Edgewater Beach Wednesday. The event served adult children caring for aging parents and seniors beginning to make end of life plans.

Dr. Leslie K. Eldridge, the executive director of the senior living facility, hosted the event and questioned the panel, which included Julie Fohrman from North Shore Geriatric Care Management and Kathy Sprau of Sprau Advocate Group.

Most questions pertained to changes the Affordable Care Act will usher in during 2014 and Medicare benefits. Eldridge acknowledged that she hears a story of someone working in crisis mode every day due to lack of planning and understanding of current policies.

“This is a topic that is on everyone’s mind these days,” said Sprau. ”There are so many questions and I think it is incredibly difficult to find information. You have the Internet and I don’t know if people know to go there.”

The audience was clearly engaged and would have asked questions for hours if allowed. The Breakers is planning another event in the coming months.

Victor Schwartz, 86, said he thought the event was very informative. “People always have these questions about how they protect their grandmother, their mother or someone that they have very close ties with.”

Learn more from the Life Matters Media Newswire:

National Institute of Medicine recommends improving end of life care

Life Matters Media featured in The DePaulia

December 10, 2012

Life Matters Media featured in the Good Men Project

Dr. Judi Strauss-Lipkin, 69, is the owner and principal of Strauss Financial in Chicago, Ill., and former professor of human resource management at Benedictine University. She spoke to Life Matters Media about her experiences caring for her aging husband. Larry, 87, a retired accountant and WWII veteran, is her husband of 26 years. Larry has suffered bouts with heart failure, Bell’s palsy, COPD and short-term memory loss.

Read the interview at the Good Men Project.

Learn more from the Life Matters Media Newswire:

How POLST forms clarify wishes: three scenarios

Occupational stress: Doctors may suffer when unable to save lives

November 20, 2012

“The Quality of Life”: The end of life played out on stage

The Den Theatre’s adaptation of Jane Anderson’s play “The Quality of Life” addresses many complex and often unspoken concerns baby boomers face as they begin to consider the end of life. The play focuses on Dinah and Bill (Jennifer Joan Taylor, Stephen Spencer), a devout, evangelical and conservative married couple from Ohio. They visit their freethinking agnostic cousins, Jeannette and Neil, (Liz Zweifler, Ron Wells) after a forest fire destroys their California home.

Dinah and Bill recently lost a young-adult daughter, their only child, to an unspeakable crime, and their own relationship has been strained since. Neil is facing late-stage prostate cancer, and Jeannette is unable to imagine living her life without him.

Neil uses marijuana to dull his cancer pain, a practice Bill judges harshly. When Bill and Dinah learn of Neil’s plans to end his own life in the coming weeks, the couple’s visit to California is complicated even more.

The couples’ ideologies clash as they attempt to work through their different beliefs about religion, medical marijuana, assisted death, morality and mortality- all within feet of the audience. Audiences become so invested in the characters that tears flow, an experience the actors call cathartic.

newcitystage.com — Wells, Spencer, Zweifler and Taylor

Life Matters Media spoke with the cast about their experiences with the play.

Why is discussing the end of life taboo in America?

Spencer: I think it’s such a cultural thing. I have friends who are more like Neil and Jeannette who’ve had a death in their family. They read through the Tibetan Book of the Dead and chanted and their whole family was around. They made a beauty of death because they saw it as a passing. In America, death is taboo. A play like this opens up the discussion.

Wells: I think it has a lot to do with our Puritanical history, our religion. It seems to me that people elsewhere in the world, particularly in Europe, have a healthier view of life and death. A lot of it gets tied up in our beliefs and everyone wants to live. I think this play, at the heart of it all, is about “how do you say goodbye?”

Taylor: Because it hurts. We don’t like to talk about things that hurt us. I love being in a play that provokes. It’s been a dream come true to be part of a story that’s so important. I’ve met people who’ve lost their children and came to this play. But they left feeling relief, in a cathartic way.

Zweifler: I’ve been nervous about people coming to see it for that reason. But they seem to really like it.

How do you feel about laws such as Question 2, which was just voted down in Massachusetts? It would have allowed physicians to prescribe life-ending drugs to some willing terminally ill patients.

Zweifler: I’m open to it, but when someone gets to decide one’s fate, that’s worrisome. But I like the idea of when it’s your time, you get to decide. But the balancing act is when do you let people go? There are new medical technologies that can keep people alive.

Wells: I have no problems with the issue at all. But I understand how people could fear these types of laws.

Taylor: I was raised Catholic and was raised to believe that suicide is a sin, and that you go to hell if you do it. Some of that is stuck in me. I don’t like the idea of someone being able to end one’s life. I like the idea of comfort at the end of life. I would probably not vote for it, but you shouldn’t have to die in pain. Not when there are good drugs around.

Do you identify with your characters?

Taylor: I’m more like Dinah than I would have ever thought. I think of myself as this liberal person, but I have this little conservative side to myself. I never really thought of it until I played Dinah. I would say things that Dinah would say. I thought I was Jeannette.

Wells: Neil is the most personal role I’ve ever played. Neil is the man I want to be. I see a lot of myself in him.

Zweifler: I definitely have Jeannette characteristics but I’m not as hard on people as Jeannette is.

The Chicago Tribune’s Chris Jones recommends this adaption. “In a second-floor walk-up, you’ll find honest Chicago acting, deep thoughts, honest writing about societal change and compassion for the messiness of all our value systems, let alone the way we want to face our end,” he wrote in his three-star review.

The Chicago Theatre Review’s Rachel Parent has called the play ”a strong note in a beautiful place.”

Tickets are available here.

Learn more from the Life Matters Media Newswire:

Childless baby boomers plan for end of life care

Beyond “The Sessions”: Intimacy at end of life

October 13, 2012

Should the U.S. ration end of life care?

Those on both sides of the issue speak out in a Chicago Ideas Week Intelligence Squared Debate

Those for and against the government rationing of end of life health care squared off as part of syndicated debate program Intelligence Squared Wednesday at the Goodman Theatre. The event, part of Chicago Ideas Week, addressed the rising cost of treatments that stress the overly burdened health care system and often prolong life by only a few weeks.

Peter Singer, Professor of bioethics at Princeton University, and Art Kellerman, Policy Analyst at the RAND Corporation, supported rationing end of life care in the debate.

Ken Connor, Chairman of the Center for a Just Society, and Sally Pipes, President and Chief Executive Officer of the Pacific Research Institute, opposed end of life care rationing.

Polls show that the live audience became more comfortable with the idea of rationing end of life care throughout the debate. Before the event, the audience was asked to vote their preference on end of life health care rationing: “For” (43%), “Against” (22%) or “Undecided” (25%). After the debate, 81 percent voted in favor of end of life care rationing, and 12 percent voted against it.

Life Matters Media interviewed Peter Singer and Ken Connor after the debate to further explore both sides of this controversial issue.

To Professor Singer:

What are your thoughts on the debate?

I thought the opposition could have been a bit stronger really. They had a difficult case. I think the arguments are clearly on our side.

What do you think of the Affordable Care Act?

I would have really preferred a single-payer system- I think it’s much simpler. I think this was a political compromise because the Democrats couldn’t get a single-payer system through Congress. It won’t happen soon. You need a big Democratic majority in the House so that the conservative Democrats can’t torpedo it.

There was a big ideological difference between both sides of the debate.

Yes, that was fairly clear. I was on one side, Art was more in the middle and the other two were much more on the free market side. I think if we held this in another part of the country we would not have got a result as one-sided. I think Chicago agrees with us.

To Ken Connor:

When somebody has an advanced disease, is there a point at which an individual should not be on artificial nutrition?

I think there’s a difference between prolonging life and letting die. I don’t presume to know where those lines are. I think those are very individualized decisions.

Is there a point at which cost of end of life care outweighs benefit?

I think it’s very individualized. There is nothing in my mind that makes government more qualified to make that decision. I don’t know how to answer in a vacuum. There is a point- consumer driven, informed by the medical community and mediated by markets. If you’re in the private sector, and the yield is so low and the price is so high- the price becomes the mediator. I’m more comfortable with that than government drawing the line.

This year, the U.S. is expected to spend $2.8 trillion on health care, while Medicare alone will cost taxpayers $590 billion. More than 25 percent of that is going towards patients in their last year of life.

Learn more from the Life Matters Media Newswire.

The entire debate is available here.

Rationing end of life care: Chicago Ideas Week

More nursing homes failing hand hygiene standards

Catholic hospitals: doctrine trumping patients’ wishes

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