Tagged: CECC

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.

Gift of Hope

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

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

Film

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

POLST Illinois moves forward

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.

Sample POLST

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.

Goldstein answering audience questions

“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.

Learn more from the Life Matters Media Newswire:

What is palliative, hospice care?

POLSTs work, says Respecting Choices’ Bernard Hammes