Student project aims to correct hospice perceptions
By John Manganaro / Senior Staff Writer
published: Mon, 29 Mar, 2010
Geriatrics isn’t the flashiest field in medicine when compared to emergency surgery or cutting-edge neuroscience, but the six University of Pittsburgh graduate students who meet in a lofty Cathedral of Learning conference room don’t seem to care.
In fact, the six master’s students from Pitt’s Graduate School of Social Work are dedicated to the world of geriatrics, and they are translating that dedication into a project addressing common misconceptions of hospice care.
“We are concerned that older patients are not taking advantage of the benefits available as a part of hospice care,” said Mara Krotec, who works on the project. “Our concern comes in large part because too many people see a physician’s referral to hospice as a death sentence — as the end.”
The goal of their project, which the students developed independently from professors and advisers, is not to raise the number of hospice referrals but to increase public awareness about what hospice care entails.
Entering a hospice is a constructive palliative decision, which shifts the emphasis away from developing a cure toward the management of symptoms. Hospices are typically recommended for patients with a prognosis of less than six months, or when a physician decides active and aggressive treatment will do nothing but hasten a patient’s death.
Students involved with the project include Krotec, Jen Marasco, Lynnae Stern, Tami Marie Krzeszewski, Joe Osiecki and Christopher Messersmith. Most of their work to-date consisted of interviews with medical professionals and conducting statistical analysis.
They operate under a series of grants from the Hartford Partnership Program for Aging Education and receive regular oversight from Beth Mulvaney, a social work field adviser at Pitt.
Mulvaney expects the students’ goal will come to fruition when they present their findings to professionals in the geriatrics field in the Cathedral on April 21.
The six students plan to elaborate on their work in front of professionals from national and local social work agencies who assisted the students over the past several months, Mulvaney said. These include field instructors, directors, administrators and local community members from within the Hartford Partnership.
The decision to enter a hospice is usually made after a recommendation by the primary physician, which is why the students’ project is primarily targeting professionals in the medical community. Currently the average stay in a hospice is only 12 days, in spite of the fact that hospice benefits are available for up to six months.
“We are pushing to start the hospice conversation with doctors and other professionals,” Osiecki said. “The more we talk about hospice care, the more benefit patients will be able to get out of it. If we can raise the average hospice stay to even 20 or 30days, that would be a major success.”
A social worker is responsible for arranging a diverse array of benefits while a patient undergoes hospice care. The benefits include easier access to medicines and other services to improve the quality of a patient’s day-to-day life. The social worker operates alongside nurses and physicians to make whatever time a patient has left as comfortable as possible.
Counseling services are also arranged for family members and can continue even after the patient dies.
“We live in a death-phobic society,” Mulvaney said. “Too many patients and physicians see hospice referrals as a resignation to death, as giving up too early, and so they are blinded from the benefits.”
Through intensive hospice care and the alleviation of symptoms, some patients even begin to rebound — in which case the decision to enter hospice can be reversed and aggressive treatments can begin again.
Mulvaney was quick to point out that patients do not typically rebound after entering a hospice, but it is important for patients to consider the potential benefits of palliative care.
“It is often difficult for patients and their families to develop the distanced perspective needed for appropriate hospice referral,” Marasco said. “Which is exactly why our project is a vital one. We need to foster the conversation.”
Wednesday, April 7, 2010
Student project aims to correct hospice perceptions | The Pitt News
Tuesday, April 6, 2010
A Promise To His Dying Wife Brings Peace And Comfort To Others - 11Alive.com | WXIA | Atlanta, GA
Posted By - Marc PickardLast Updated On: 4/6/2010 8:21:26 PM
ATLANTA -- Dave Frew wasn't interested in being tied down.
So he wasn't prepared for the lightning bolt that hit him when Stephanie walked through the door of his company31 years ago. They married. Their life together was storybook. But their story ended too soon.
Dave Frew spoke with 11Alive's Marc Pickardabout the love of his life -- and the promise he made to his beloved Stephanie.
Dave and Stephanie frew traveled around the world together, living a life few would dare dream of.
"The term was fairy tale," Dave said. "And our life was. Our life was completely fairy tale."
On a trip to Africa, Stephanie complained of severe stomach pains.
"After six days of testing, they told us that she had terminal cancer," he said.
Doctors said she had three years.
"It was three years they gave us," Dave said. "And Iheard them. But I did not accept their prognosis."
Dave sought the best doctors, medicines and treatments anywhere in the world. They went to Tampa where, for the first time, Stephanie saw therapy dogs.
"She lit up like a Christmas tree," Dave said. "And she says, when we get home, Ranger has a job."
Stephanie Frew had decided that she and their dog Ranger would be certified with happy tails to be a dog therapy team to visit the sick and bring them some comfort.
"She was dying," he said.But she knew it.But it didn't matter. That was her passion."
Through it all, Stephanie and Dave spoke frankly about death.
"She wasn't concerned about her passing," he said. "She wasn't. She was ready. She was concerned about leaving me behind."
Last July, almost 10 years after her diagnosis, Stephanie Frew died at home.
"I built gardens," Dave said. "They're magnificent. And they were built for her. And she passed away in the gardens."
Before Stephanie died, Dave made a pledge.
"One of the promises I made to her is that I would honor her by getting certified as a pet therapy handler," he said. "And I would continue her legacy."
Dave Frew and Ranger are a certified pet therapy team for happy tails. Today they are visiting Children's Healthcare of Atlanta.
"He loves visiting people," Dave told a young patient, "and bringing comfort and love and happiness to everybody."
Now, Dave Frew has a new passion in his life.
These dogs not only help the patients, but also everyone around them.
Could it be that Stephanie Frew knew that by asking her husband to carry on her work, she would be helping him heal his own heartache?
If you'd like to contact Dave, or Ranger, you can email them at: davefrew37@gmail.com-- or call them at 404-275-1319.
Discussion: Hospice & Palliative CareCenter | LinkedIn Ellen Coble
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I have found that as people journal there thoughts about their loved ones, the saint factor begins to fade. A period of in depth journaling over a period of days and even weeks tend to strip every emotion from the bereaved leaving a more realistic view of the person they lost. Sometimes it is a matter of how deep and how far the survivor wants to go. It is definitely a long journey but one that has light shed on the emerging soul.
Monday, April 5, 2010
Virtual Hill Day 2010 - The National Hospice and Palliative Care Organization
Can’t make it to D.C. for Capitol Hill Day?
NHPCO is bringing Hill Day to you!
Last year, more than 3,000 Hospice Advocates from around the country contacted their Members of Congress through NHPCO’s Virtual Hill Day. Our presence on the Hill was unquestionable – when the DC Hill Day participants arrived for their Congressional meetings, they were often greeted with, “We have been hearing from the folks at home all day.” To build on that resounding success, we are including Virtual Hill Day participants in more Hill Day activities and opening participation up to our Facebook, Twitter and YouTube fans!
Here’s what we have in store for VIRTUAL Hill Day 2010:
- The day will start with a pep rally at 8 a.m. E.S.T. on April 21, featuring remarks from Congressional hospice champions.That morning, we will send out a link for our Virtual Hill Day attendees to view and participate from home.
- After the pep rally, all you will need to do is set aside some time on April 21 to make a few toll-free calls to your federal representatives.
- Make sure you’re signed up for Hospice Advocate Action Alerts through our Legislative Action Center and/or you are a Hospice Action Network fan on Facebook.These are the only ways we will be sending out information on the morning of April 21 to Virtual Hill Day participants. See www.nhpco.org/advocacy for details.
- We will contact all Hospice Advocates by email through the Legislative Action Center and you can also find instructions the morning of April 21 on the Hospice Action Network Facebook page.
- You’ll receive the same talking points that attendees will use for their meetings in D.C.
- We’ll also provide you with a quick online feedback form so you can tell us about your Virtual Hill Day experience.
Mark your calendars for April 21
Hospice Advocates are taking Capitol Hill by foot…and by phone!
Come on virtual advocates....let's get ready to rrrrruuuuummmmbbbbbbllllllleeee!
Sunday, April 4, 2010
Hospice Volunteer Training Online - Choosing the Path of Service
Training designed for hospice volunteers. Online courses cover basic concepts and do not replace on site training. These courses enhance the volunteer experience by providing infection control, ethics and privacy, and communication techniques. Other courses suitable for enhancing the volunteer experience are posted and updated regularly.
Hospice Volunteer Training Administrator: Robin Watts Cost: $10.00 11 modules based on Medicare Conditions of Participation. Training in the core concepts of hospice with on site training provided by the hospice agency for patient care. After completing this course, the volunteer is qualified to perform the administrative volunteer role after meeting agency specific requirements for applications, background check, and company policy and procedures review.Choose the path of service by becoming a hospice volunteer today.
Months to Live - Palliative Care Doctor Fought for Life
She preached the gentle gospel of her profession, persuading patients to confront their illnesses and get their affairs in order and, above all, ensuring that their last weeks were not spent in unbearable pain. She was convinced that her own experience as a cancer survivor — the disease was first diagnosed when she was 31 — made her perfect for the job.
In 2008, while on vacation in Boston, she went to an emergency room with a fever. The next day, as the doctors began to understand the extent of her underlying cancer, “they asked me if I wanted palliative care to come and see me.”
She angrily refused. She had been telling other people to let go. But faced with that thought herself, at the age of 40, she wanted to fight on.
While she and her colleagues had been trained to talk about accepting death, and making it as comfortable as possible, she wanted to try treatments even if they were painful and offered only a 2 percent chance of survival. When the usual cycles of chemotherapy failed to slow the cancer, she found a doctor who would bombard her with more. She force-fed herself through a catheter and drank heavy milkshakes to keep up her weight.
Over the last decade, palliative care has become standard practice in hospitals across the country. Born out of a backlash against the highly medicalized death that had become prevalent in American hospitals, it stresses the relief of pain; thinking realistically about goals; and recognizing that, after a certain point, aggressive treatment may prevent patients from enjoying what life they had left.
Dr. Pardi had gone into the field because she thought her experience as a patient would make her a better doctor. Now she came face to face with all the ambiguities of death, and of her profession.
She remembered patients who complained to her that she did not know them well enough to recognize that they were stronger than she had thought. Now she discovered that she felt the same way about her own doctors. “I think they underestimated me,” she said in an interview last summer.
She came to question the advice she had been giving. She thought about quitting. “I just decided I have to believe in what I’m saying,” she said.
Desiree Dougherty was the overachiever of a modest family, the daughter of a sheet-metal worker and foreman and a nurse in Rockland County, about 30 miles north of New York City. She was 5-foot-1, with a wide, warm smile, a cascade of blond hair, blue eyes and a figure that turned heads. She loved the color green; Pink Floyd; and sentimental books and movies, like Richard Bach’s novel “One,” about life’s choices, and “Pretty Woman.”
She met her future husband, Robert Pardi Jr., on her first day of college at Stony Brook University. She wanted to be a doctor; he wanted to make money. “She was a hippie chick with blue eyeliner,” her husband recalled of those carefree days, “a far cry from the Ann Taylor woman she would later become.”
She began an M.D.-Ph.D. program at Mount Sinai School of Medicine in Manhattan at age 24. In 1998, she was halfway through when she decided to take a few months off to join her husband in the United Arab Emirates, where he was working as a portfolio manager.
‘It Was Bad News’
She needed a routine health screening to obtain a visa to remain in the country, and opted for a more thorough exam. At the hospital in Dubai, she later explained, the custom was for doctors to talk to the husband, even when the wife was the patient.
So her husband came home early one afternoon, and instead of taking her out for Turkish coffee and sweets, sat her down and said, “I’m afraid it was bad news.” Further tests showed she had breast cancer. She had just turned 31.
She discovered that she liked having her husband act as a buffer between her and her doctors. From then on, even when she was in the United States, her doctors were told that they should communicate only with him.
She light-heartedly called herself “the Queen of Denial,” because she did not want to know anything about her disease. Her husband gave her just enough information to enable her to make decisions, and she always chose the most aggressive treatment. When a doctor in Dubai suggested she wait a bit before getting a mastectomy, she would not hear it. “Off, I want it off!” she insisted.
After the mastectomy and months of chemotherapy, she was told the cancer was gone. Determined to try anything that might prevent a recurrence, she underwent a stem-cell transplant in 1999, before they were found to be ineffective for breast cancer. She had her other breast removed protectively, though her double-D figure had been a source of pride.
She graduated from medical school in 2002, and was invited to appear on a segment of “The Oprah Winfrey Show” about people who had overcome obstacles and graduated. She was tongue-tied, but expressed her joy by throwing her arms around a startled Ms. Winfrey.
She did her residency at NewYork-Presbyterian/Weill Cornell Medical Center, where her mentor, Dr. Mark Pecker, said she had among the highest medical board scores he had ever seen.
Then what she had been dreading happened. During her residency, her cancer returned, invading her liver, and she was treated with drugs and surgery. Even after that, she was never fully in remission.
When it came time to choose a specialty, she was drawn to oncology and psychiatry, but thought palliative care was a good compromise. During one hospitalization at NewYork-Presbyterian, she had asked for intravenous Dilaudid, a strong opioid, for “10 out of 10” pain. She was labeled a “drug seeker” by the medical staff, she said — perhaps because she was asking for the drug by name — as if she were an addict craving crack. It was a revelation that would lead her toward palliative care: that treating the pain was as important as treating the sickness.
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