How palliative care brings comfort to suffering patients, families


A doctor hangs her head. A patient loses hope. Medicines haven’t worked. Surgery is not an option. Frustration, fright, even anger fills the air.

Susan Shaw, nurse practitioner (PHOTO BY SUSAN KAHN)

Susan Shaw, nurse practitioner (PHOTO BY SUSAN KAHN)

That’s often the type of situation nurse practitioner Susan Shaw encounters.

“My goal is to find some hope,” she described. “Let’s change the focus to something we can do something about, like quality of life. This lets the patient take control of things that we can control.”

Shaw works in adult palliative care at Upstate University Hospital. She and colleagues provide an array of inpatient services to patients with severe conditions – this includes accident and burn victims as well as patients with cancer and other diseases. Some of them have a chance for recovery, but most are not considered curable. All of them, however, have a prognosis of more than six months.

“Palliative care focuses on symptom management and advance directives and can transition to end-of-life care,” Shaw said. The patient’s goals might be pain relief, surviving until a child’s wedding or simply spending one’s remaining months at home, and the palliative care team works to help achieve those goals, which will likely change during the course of the illness.

New York state requires health care providers to give patients with a terminal illness information and counseling about palliative care and end-of-life options. Two doctors and three nurse practitioners make up the Adult Palliative Care Services team at Upstate University Hospital’s downtown campus. They see about 100 patients per month, continuing a steady growth since the service began in 2002, according to Barbara Krenzer, MD, the service’s medical director.

“More people are having the conversation and making decisions sooner,” she said of the growing acceptance of palliative care by physicians and patients. “They see the benefits, the patients themselves and the families ask for it, and physicians and nurses are more comfortable with it.”

Money raised from this year’s Upstate Foundation Gala will go toward the palliative care program.

Embracing life

Social workers are integral to palliative care, assisting with personal and family matters as well as paperwork, explained Chevelle Jones-Moore, a medical social worker at Upstate. She said most patients who select palliative care want to be able to embrace the life they have left.

Chevelle Jones-Moore, social worker (PHOTO BY SUSAN KAHN)

Chevelle Jones-Moore, social worker (PHOTO BY SUSAN KAHN)

“The services we offer are to try to help the patient live life to the fullest, with a minimum of pain, to provide comfort and to see how we can enhance this person’s comfort,” she said.

Among the paperwork tasks for someone in palliative care are deciding:

1. whom to appoint as a health care proxy or spokesperson to carry out the patient’s desires if the patient cannot do so.

2. whether to set up “do not resuscitate” orders; and

3. about advance directives, making it clear what should be done if a feeding tube or breathing machine becomes necessary.

Many families are troubled by such discussions “because ‘end-of-life’ and mortality in the United States is still feared. There’s still a taboo about talking about death and dying,” said Mark Buttiglieri, director of social work at Upstate. Including those who act before and after a diagnosis, he estimates only about 25 percent of cancer patients establish health care proxies.

As for children with incurable diseases, they can receive inpatient and outpatient palliative care through Upstate’s CHOICES program, which also treats children with long-term, medically complicated conditions as well as those with chronic pain. The acronym stands for courage, hope, options, insight, compass (to find one’s direction), empathy and support, explained CHOICES medical director, Irene Cherrick, MD.

CHOICES, which adds about six to 10 new patients a month, is usually for patients up to age 19, Cherrick said.

“We spend a lot of time creating a trusting relationship with the family, so then they feel like they can come to us with the needs for their children, being able to advocate for their children, being able to discuss their hopes and their fears for their children, and that takes awhile,” she said. “You have to build a relationship.”

“I always tell people there’s no ‘d’ in the CHOICES title for death or dying, since most of our patients are not dying but rather living with difficult decisions. Most pediatric patients seen nationwide by a pediatric palliative care specialist are alive a year later. The CHOICES program follows many of these patients for many years.”

What hospice offers

Patients with a prognosis of fewer than six months are eligible for end-of-life care through Hospice of CNY, an organization that helps families deal with advance directives, pain management and aiming for the best quality of life possible.

Hospice care is administered wherever the patient is — at home, at a nursing home, hospital or hospice residence such as Francis House, a 16-bed facility in Syracuse, said Judy Setla, MD, medical director of Hospice of CNY.

People should think of hospice “as a set of services, not as a place, because most hospice patients live at home. We also provide medical oversight to nearly all local nursing facilities, and at Francis House, our longtime partner,” she said. “We use a team of highly trained people to address pain, stress and other suffering in the person and their family.”

Hospice of CNY works with hospital palliative care teams on a daily basis. When a patient is in his or her last months of life, hospital staff contact Hospice of CNY to visit the patient with information about services available to the patient and family. If Hospice services are accepted, they assist in the transition home, including equipment, medications and other services.

Setla wishes more Central New Yorkers used hospice services, which are usually paid for by Medicare, Medicaid and private health insurance plans. Her organization served 1,117 patients in 2014. Onondaga County’s hospice use rate is about 21 percent, she said, below the state average of 29 percent and well below the 50 percent range of the Monroe and Albany county areas. Compared nationally, the CNY region uses hospice services only half as much, Setla said.

”The reason for low use of hospice in CNY is complex. Physicians and families often have trouble recognizing when a person has shifted from being chronically ill to terminally ill,” Setla said. “Many people, even doctors, don’t know that hospice care is appropriate not just for cancer but for severe lung, heart and neurological diseases like dementia.

“There is also a myth that enrolling in a hospice program shortens life. In fact, recent research suggests hospice patients, and those who receive palliative care earlier in various conditions, live longer than those who get traditional care only.”

cancercarefall15This article appears in the fall 2015 issue of Cancer Care magazine.

croppedhloaHear Setla’s radio interview about hospice and palliative care. Hear terms like living will and health care proxy explained in a separate radio interview with Thomas Curran, MD, chair of the Ethics Consulting Service at Upstate, and Robert Olick, JD, PhD, chair of Upstate’s Ethics Committee.  

Posted in bioethics, cancer, community, foundation, Health Link on Air, hospital, Medicare | 1 Comment

Pam Youngs-Maher, MEd, inducted into Academy of Upstate Educators

Pam Youngs-Maher, MEd,

Pam Youngs-Maher, MEd

Upstate Medical University presented 16 awards at its fall convocation Sept. 16.  Among the awardees was Pam Youngs-Maher, MEd, who was inducted into the Academy of Upstate Educators.

Youngs-Maher is director of online and distance learning in the Department of Educational Communications/Information Management and Technology at Upstate Medical University.

The Academy of Upstate Educators was created to provide recognition to a group of innovative and excellent educators who demonstrate the significant commitment to education that is a core part of our mission and to provide a resource to faculty colleagues and administrative leaders as they address education-related issues.

Members of the Academy are individuals who have consistently demonstrated excellence in educational activities.



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Frederick Parker, Jr., MD, receives excellence in philanthropic service award

Upstate Medical University presented 16 awards at its fall convocation Sept. 16. The President’s Award for Excellence in Philanthropic Service, Individual, was given to Frederick B. Parker, Jr., MD. Below is his biography, as it appears in the convocation program.

By Stephanie DeJoseph

Frederick B. Parker, Jr., MD

Frederick B. Parker, Jr., MD

“No one says no to Fritz.” That is the legacy at The Upstate Foundation of Dr. Frederick B. Parker Jr., known to all as Fritz. The expression refers to his donation of time as an active advocate for Foundation causes such as the Upstate Golisano Children’s Hospital, Upstate Cancer Center and Friend in Deed, the annual fund for Upstate University Hospital. In addition, Dr. Parker has been a member of the Foundation’s board of directors for 14 years, serving as an officer, including chairman, and sitting on numerous committees. As generous as he is with his time, he is equally generous as a philanthropist. His giving history at the Foundation dates back to 1981 and is highlighted by naming gifts in the Children’s Hospital and Upstate Cancer Center.

After making those naming gifts, Dr. Parker assumed a leadership role in both of the Foundation’s capital campaigns, for the Children’s Hospital and Cancer Center. Soft-spoken and passionate, he approached countless prospective donors about the value of having such important resources in the Central New York community. While he was quite effective, he was also quietly persistent, never giving up until he procured the gift. After the Children’s Hospital campaign, the adage “no one says no to Fritz” was born. During the cancer campaign, Foundation development officers would occasionally turn to Fritz to help close a difficult gift. After all, no one says no to him.

Dr. Parker is a former co-chair of Friend in Deed, Upstate University Hospital’s annual fund. It is typically a token position, but not for Dr. Parker. He rolled up his sleeves and began to work. He requested report after report from the Foundation. He scheduled meetings with the hospital’s department chairs. He made face-to-face solicitations. He sent an appeal letter to family members and friends. And as always, he led by example, making his own gift first. Together with his wife, Ginny, Dr. Parker has been contributing to Friend in Deed for 17 consecutive years. They also support Upstate’s annual Gala and contribute to a wide variety of Foundation funds.

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Why you should take pain control seriously

Pain can be a significant part of the cancer experience for many patients, some of whom are reluctant to take prescription opioids.

Some patients fear becoming addicted to medications such as morphine or are concerned about common side effects such as sedation, itching, constipation and even hormonal imbalances.

Brendan McGinn, MD

Brendan McGinn, MD

Brendan McGinn, MD, an assistant professor of anesthesiology specializing in pain management at Upstate, said side effects are easily treated, and cancer patients, especially, can obtain pain relief with appropriate opioid prescribing.

“In actuality one of the few indications for chronic usage of these medications is in the treatment of cancer pain,” he said.

People with cancer may feel pain from a tumor that physically compresses internal organs, nerves or bones, from surgical trauma or from the effects of chemotherapy or radiation. McGinn said psychological stress can also be a major factor contributing to pain.

McGinn emphasized that pain should be treated aggressively as soon as it becomes an issue and that staying ahead of pain is essential in helping to reduce its severity. He said studies have shown that having good control of pain can help cancer patients live longer.

Standard nonsteroidal anti-inflammatories such as Tylenol and ibuprofen are effective for joint and muscle pain related to cancer, while nerve pain that is more of a burning or tingling sensation may be treated with some antiseizure or antidepressant medication, McGinn said. However, severe pain, no matter what the cause, may require morphine or other types of opioids.

In addition to medications, interventions such as nerve blocks and various injections can be utilized to treat cancer pain. Meditation, acupuncture or comprehensive psychological support can also help. “These are all crucial therapies, and they’re often underutilized,” McGinn said.

Pain management is one of the Upstate Cancer Center’s support services. Reach the Division of Pain Medicine by calling 315-464-4259 or visiting the Cancer Center’s Support Services Web page.

croppedhloaCancerCoverf15clrHear McGinn’s radio interview about treating the pain of cancer and other illnesses. This article appears in the fall 2015 issue of Cancer Care magazine.




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Upstate ranks near top for undergraduate career earnings in latest College Scorecard

This is Weiskotten Hall at Upstate Medical University.

This is Weiskotten Hall at Upstate Medical University.

Upstate Medical University ranks as one of the top institutions in the country for undergraduate career earnings, according to the College Scorecard, recently released by the U.S. Department of Education.

Students graduating from Upstate’s  undergraduate programs earned the third highest income—$112,900—of any school in the country, according the database that ranks more than 3,500 schools.

The income data reflects the median salary of former students who received federal financial aid at 10 years after entering school. The national average income for undergraduates 10 years after entering school is $34,343.

College of Health Professions Dean Donald Simpson, PhD, is not surprised by the ranking. “I don’t think students will find a better return on their investment than pursuing a career in the allied health professions,” he said. “Bureau of Labor Statistics data supports continued demand for allied health professionals, and as our population ages and more people have access to care, this need will be exacerbated.”

Simpson noted that the graduation rate for his college’s bachelor’s degree programs is 95 percent with a 99 percent job placement rate.

The database based its findings on Upstate’s 284 undergraduate students.

The College Scorecard is an easy-to-use online database that lists a variety of information about the nation’s colleges and universities to help students choose a school. Information such as test scores, percentage of students receiving aid, and graduation rates are listed on the database for many schools.

Upstate offers numerous health professions programs, including 10 undergraduate degree programs: Cardiovascular Perfusion; Medical Imaging/Radiography; Medical Imaging/CT and MRI; Medical Imaging Ultrasound; Medical Biotechnology; Medical Technology; Radiation Therapy; Respiratory Therapy; an RN to BS degree in Nursing; and an accelerated BS to doctoral degree in Physical Therapy. It also grants MD, PhD, DPT, MS, and MPH degrees, as well as advanced certificates.

Upstate continues to be an attractive school for students in all areas of study, Simpson said.  “Low in-state tuition, a dedicated faculty and a professional atmosphere from day one are just a few of the benefits experienced by Upstate students.”

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TOPS receives excellence in philanthropic service award

tops-markets_416x416Upstate Medical University presented 16 awards at its fall convocation Sept. 16. The President’s Award for Excellence in Philanthropic Service, Corporate, was given to TOPS Friendly Markets. Below is the company’s profile, as it appears in the convocation program.

By Stephanie DeJoseph

TOPS Friendly Markets has been a steadfast partner of Upstate Golisano Children’s Hospital and Children’s Miracle Network Hospitals (CMNH) since 2004. During that time, staff and customers have raised more than $250,000 at the company’s 32 locations to support pediatric care at Upstate.

Over the years, TOPS has conducted its very popular “Free Gas and Groceries” giveaway by asking shoppers to donate to the Children’s Hospital for a chance to win free gas and groceries for a year. As a CMNH partner, TOPS hosts an annual balloon campaign, which raised nearly $40,000 in 2015. Recently, with the help of managers and staff, the company kicked off “Casino Night” as a way for employees and vendors to enjoy a night out while supporting pediatric care locally. Last year’s event raised more than $20,000. TOPS also contributes to the Upstate Foundation’s annual Radiothon for Kids and Upstate Open, generously donating food products for the enjoyment of participants as part of their longtime partnership.

TOPS believes strongly in giving back to the community, providing financial, volunteer and in-kind support to improve the quality of life with a focus on children. Upstate Golisano Children’s Hospital has enjoyed a strong and dedicated partnership for many years and looks forward to many more.

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The most prevalent cancers treated at Upstate: lung, breast, thyroid


The top 10 cancer diagnoses, by percentage, of adult patients treated at Upstate in one year. (SOURCE: UPSTATE UNIVERSITY HOSPITAL)

The top 10 cancer diagnoses, by percentage, of adult patients treated at Upstate in one year. (SOURCE: UPSTATE UNIVERSITY HOSPITAL)

Prostate, breast, thyroid and lung cancers are the most commonly diagnosed cancers in New York state, outside of New York City. They are also the top diagnoses among cancer patients being treated at Upstate University Hospital.

Neurological, kidney and bladder cancers affect far fewer Upstate New Yorkers. Yet, many people with these cancers seek care at Upstate because of its strong reputation.

CancerCoverf15clrThis chart appears in the fall 2015 issue of Cancer Care magazine.



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Baldwin Fund receives award for exemplary support of biomedical research

Carol M. Baldwin

Carol M. Baldwin

Upstate Medical University presented 16 awards at its fall convocation Sept. 16. The President’s Award for Exemplary Support of Biomedical Research was given to Carol M. Baldwin Breast Cancer Research Fund of Central New York. Below is a profile of the charity, as it appears in the convocation program.

By Stephanie DeJoseph

It is estimated that one in eight women will develop breast cancer during her life. It is a disease that will claim the lives of nearly 40,000 women and 500 men this year alone in the U.S. However, millions are surviving breast cancer thanks to early detection and improvements in treatment. Research is the key to making such advancements happen. The Carol M. Baldwin Breast Cancer Research Fund of Central New York is committed to finding a cure through research. To date, the Fund has donated more than $2.75 million locally to help understand more about this devastating disease. The support goes directly to investigators conducting breast cancer research at Upstate Medical University; to bring noted scientists to campus; and to support a clinical lecture series organized by faculty practicing at Upstate University Hospital.

The Baldwin Fund awards multiple $50,000 grants each year to investigators conducting breast cancer research here. As of 2015, 31 research grants have been awarded to Upstate researchers, with five new grants slated for 2016. Our researchers investigate the causes, prevention and treatment of breast cancer. This research has been wide ranging, including studies of the genetic, molecular, cellular and environmental factors involved in the development and progression of breast cancer, as well as clinical research studies.

The Baldwin Fund also sponsors two annual endowed lectureships focused on breast cancer developments in treating the disease. Aimed at physicians, the scientific lectures are presented by leading experts in breast cancer and are named in honor of a local breast cancer survivor. The lectures span a wide breadth of basic and clinical research topics, from scientific cause and effect, detection, and new targeted therapies to mastectomies and reconstruction.

Through the tireless efforts of breast cancer survivor Carol Baldwin; her daughter and the Fund’s executive director, Elizabeth Baldwin; granddaughter and the Fund’s associate director, Jacqueline Baldwin-Calveric; other members of the Baldwin family; and an army of volunteers and supporters, the Baldwin Fund hosts a variety of events, to raise both awareness and funds in support of support biomedical research. Asking others to join her crusade, Carol Baldwin is positive that through the work of the Fund, “together, we will find a cure!”

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‘Diabetes: Across the Lifespan’ forum set for Nov. 4

The 15th annual CNY Diabetes Forum is scheduled for 5 to 8 p.m. Wednesday, Nov. 4. It’s a free event, with limited seating. Reserve your spot today by calling 315-464-8668 or 1-800-464-8668.

The forum takes place in the cafeteria at the Community campus of Upstate University Hospital, at 4900 Broad Road in Syracuse. Free parking is available in the “F” lot only.

Registration and a vendor fair takes place from 5 to 6 p.m. Roberto Izquierdo, MD speaks at 6 p.m. A professor of medicine and pediatrics, Izquierdo is the associate director of the Joslin Diabetes Center, section chief of pediatric endocrine and diabetes and medical director of the thyroid cancer center at Upstate.

From 6:45 to 7:30 p.m. are three breakout sessions: “Eating healthy in the real world,” by registered dietitian nutritionist Pam Blackmer; “How to build activity into your daily life,” by physical therapist Karen Kemmis; and “Coping with diabetes,” by social worker Paul Stasior.

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Will zinc be an element of future cancer treatment?

Stewart Loh, PhD (left), and Adam Blander in the lab where they are developing an experimental cancer drug that, in 10 years, may be used to repair a gene that is implicated in about half of all cancers. (PHOTO BY WILLIAM MUELLER)

Stewart Loh, PhD (left), and Adam Blander in the lab where they are developing an experimental cancer drug that, in 10 years, may be used to repair a gene that is implicated in about half of all cancers. (PHOTO BY WILLIAM MUELLER)


Cancer researchers for decades have focused their microscopes on the tissue where cancer is discovered, be it the lung, the breast, the skin or elsewhere.

“Now we are learning it’s not so much where the cancer comes from, but the mutations that cause each individual to develop cancer and allow that cancer to progress,” said Adam Blanden, a fourth-year MD/PhD student in his second year working in the lab of Stewart Loh, PhD, a professor of biochemistry and molecular biology at Upstate Medical University.

Research underway in Loh’s lab focuses on mutations of a gene called p53, on chromosome 17, which is implicated in about half of human cancers — regardless of the tissue in which the cancer is found.

The gene is a tumor suppressor, meaning it is supposed to stop the formation of tumors. But when the gene mutates, it does the opposite, playing a role in a series of complex molecular events that lead to tumor formation.

“There are lots of ways p53 can go wrong, and one way is the loss of zinc,” Blanden said.

His work involves restoring proper zinc binding to several zinc-impaired mutations in p53, including the most common mutation that leads to cancers.

“This is a fundamentally new way to approach the problem,” he said. “We’re trying to change the environment of the cell so that even if p53 is defective, it can still function. It’s a complete end-around.”

oncocoverThe traditional approach, Blanden explained, has been to search for molecular compounds that restore the activity of the mutated p53 by binding to it and “fixing” it. Those attempts have been unsuccessful.

Loh and his collaborators at the Rutgers Cancer Institute of New Jersey have discovered a new class of experimental cancer drugs that can reactivate mutant p53 by shuttling zinc ions into cells. Their work appears most recently in the May issue of the journal Molecular Pharmacology, the July pharmaissue of the journal Drug Discovery Today and the August issue of the journal Oncotarget.

A safe, effective treatment is likely at least a decade away, but Blanden imagines it could work like this:

A patient receives a cancer diagnosis. Genetic sequencing is done to determine if the patient’s p53 gene is mutated, and if so, if the mutant p53 is one of numerous types that can be reactivated by restoring zinc binding. Treatment would then likely consist of zinc in combination with a drug optimized for that particular p53 mutant.

cancercarefall15This article appears in the fall 2015 issue of Cancer Care magazine.

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