BY JIM HOWE
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.
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.
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.
“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.”
This article appears in the fall 2015 issue of Cancer Care magazine.
Hear 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.