For the chronically ill, palliative care a steadfast friend

Longer lives causing changes in health care decisions.

Mary “Kat” Harrison has fought two forms of cancer since 2011. She takes 10 medicines daily and has endured at least 80 rounds of chemotherapy. She no longer works full-time, instead focusing on her health.

But the 45-year-old Franklin resident hasn’t had to visit a hospital emergency room in more than a year.

For that, she credits a group of doctors who are preparing to open an outpatient palliative care clinic in the region. The clinic will have a simple goal: help chronically ill patients live — and sometimes die — on their terms.

The facility is part of a national trend toward getting more people access to this kind of care, according to Dr. Diana Meier, director of the New York City-based Center to Advance Palliative Care.

As medical advances continue, patients with medical conditions that might have killed them 10 years ago are now living longer while managing their illnesses.

“The issue is not so much the end of life; the issue is people living with serious chronic diseases,” Meier said. “Most serious illnesses nowadays, you live with for a very long time before you die.”

Palliative care in U.S. hospitals has been growing since 2000, according to a September 2014 analysis by the Center to Advance Palliative Care. The number of hospitals — institutions with 50 or more beds — with a palliative care team increased from 658 to 1,734 between 2000 and 2012.

If that trend continues, by the end of 2015, eight in 10 U.S. hospitals with 50 or more beds will have a palliative care program, the center said.

Palliative care is aimed at improving the quality of life of those suffering terminal or serious chronic illnesses. Hospice care, on the other hand, is a recognized Medicare benefit, usually for patients expected to be six months or less from death.

The practitioners of the new Dayton-area facility include four board-certified physicians, 10 advanced-practice nurses and one registered nurse. For about nine years, they have operated a medical practice called Innovative Care Solutions, serving patients inside hospitals and at Hospice of Dayton.

Hospice, which owns Innovative Care Solutions (ICS), will soon sign a lease on space for a local outpatient clinic, probably in southern Montgomery County.

ICS staff has a saying: All hospice care is meant to be palliative. But not all palliative care is hospice care.

“Palliative care is more about living well,” said Mark Curtis, an ICS advanced practice nurse who offers patients psychological counseling. “And hospice is a little more about dying well.”

Kent Anderson, Hospice of Dayton president and chief executive, said that while ICS has operated for close to a decade, the focus on outpatient palliative services is new to Dayton.

“We’re not just opening a clinic to open a clinic,” Anderson said. “We are coordinating with physicians who say this is a needed service.”

This is part of a broad, long-term shift in health care, away from hospital beds and institutions where possible.

“We are starting to de-emphasize, somewhat, institutional care,” Anderson said.

Palliative’s progress

When Dr. Stuart Merl, a Kettering Health Network oncologist, attended cancer conferences two years ago, attendees were just starting to try to "convince themselves" that palliative care was necessary.

It’s different today, Merl said.

“Practitioners are feeling that this is a needed service,” he said.

Palliative care never will supplant primary medical care, Anderson said.

“It’s not an alternative to treating you; it’s a complement to treating you,” said Jackie Matthews, ICS director.

ICS is a nonprofit subsidiary of Hospice of Dayton, said Dr. Chirag R. Patel, ICS medical director of palliative care services. Hospice of Dayton Foundation funds the practice. Otherwise, it would not exist.

The financial challenge is simple but daunting. Palliative medicine requires an “inordinate” amount of time with patients, Patel said. At this point, ICS simply can’t bill enough to offset its costs.

ICS doctors and nurses tend to spend 30 to 45 minutes with each patient, he said. The norm is closer to 7 to 10 minutes for primary care doctors seeing perhaps 3o or more patients a day. Half of ICS patients are considered “terminal” or unlikely to recover.

The practice’s volume of patients is lower, since those patients require more time, Patel said. ICS patients tend not to be relatively healthy people doing crossword puzzles in a doctor’s waiting room.

“Our folks are frail,” Patel said.

He maintains that an outpatient clinic makes financial sense, however. It should help with patient volume. And it should draw patients who may have years of life left, he said.

Said Patel, “We will bring in much younger folks, folks who are earlier on their (disease) trajectory.”

Anderson and others interviewed for this story declined to share specific revenue figures for the practice. ICS has never broken even, Patel said.

Hospice of Dayton probably will invest $50,000 or $60,000 into the new clinic, Anderson said.

Patel predicts that with continuing health care reform, there will be a time when practices like ICS are independent “because of the value that we bring,” Patel said.

“The shift will come,” he said.

Dangerous places

Dr. Diana Meier, director of the New York City-based Center to Advance Palliative Care, said palliative care will grow as patients live longer.

“The issue is not so much the end of life; the issue is people living with serious chronic diseases,” Meier said. “Most serious illnesses nowadays, you live with for a very long time before you die.”

Many forms of cancer, emphysema, heart failure, kidney failure and other serious illnesses have been turned into chronic problems requiring long-term care — and not necessarily in a hospital.

But if patients are living longer, they also are living with pain, she said. And with that comes heavy costs. Serious illness in the United States is the No. 1 cause of personal bankruptcy, she said.

If a patient is experiencing worsening pain or having trouble breathing after 5 p.m., the options are to call 911 or visit an emergency room, Meier said.

Ironically enough, hospitals may not be the best place for sick people, she said. They are expensive for families and patients. Emergency room staff can be overstressed and overworked. Hospital workers make mistakes.

Said Meier, “Hospitals are actually a rather dangerous place for vulnerable, sick people.”

John Palmer, spokesman for the Ohio Hospital Association, knows palliative care has expanded in Ohio and across the country, and hospitals themselves have embraced that kind of care, he said.

There’s nothing new about an emphasis on outpatient care where that’s appropriate, he added. That’s happening across the industry, he said.

“Consumers are really driving that shift from inpatient to outpatient care,” Palmer said.

Nancy Foster, vice president for quality and patient safety policy for the American Hospital Association, said hospitals are actually the “ideal place for people who are very sick.”

Hospitals are the place for “curative care” and treatment that mitigates pain associated with disease, whether it’s chronic or acute, she said.

“Many people who are in hospice care are not looking for curative treatment or aggressive care. For those folks, hospitals are not the ideal place,” she said.

But hospitals in general have a twofold mission, she added. They are designed to help “people stay as well as they possibly can,” she said. They also help people enduring acute illnesses that demand immediate attention.

“We’re there to make sure people get the right care at the right time in the right way,” Foster said. “And that’s the goal of all health care providers.”

“This (palliative care) aligns physicians and social workers and a lot of other workers to kind of rally around the patient in their condition and to make sure they have the best experience possible,” Palmer added. “I don’t think this reflects anything on (patients) not receiving appropriate care in a hospital setting.”

The focus needs to turn to improving the quality of added years in a cost-effective way, Meier said. That’s where palliative care comes in.

“It’s the most rapidly growing sub-specialty in medicine, and the reason is there is widespread recognition that there is lot of preventable suffering out there,” Meier said.

Living longer

Many forms of cancer, emphysema, heart failure, kidney failure and other serious illnesses have been turned into chronic problems requiring long-term care — and not necessarily in a hospital.

But if patients are living longer, they also are living with pain, she said. And with that comes heavy costs. Serious illness in the United States is the No. 1 cause of personal bankruptcy, she said.

If a patient is experiencing worsening pain or having trouble breathing after 5 p.m., the options are to call 911 or visit an emergency room, said Meier of the Center to Advance Palliative Care.

The focus needs to turn to improving the quality of added years in a cost-effective way, she said. That’s where palliative care comes in.

“It’s the most rapidly growing sub-specialty in medicine, and the reason is there is widespread recognition that there is lot of preventable suffering out there,” Meier said.

Rich resources

There was a strategy behind Hospice of Dayton’s decision to create ICS nearly a decade ago, Patel said.

“It was probably done maybe as a way to prevent other competitors from going into this market,” he said. “The leadership at that stage felt that we needed to bring our philosophy, the palliative medicine philosophy, into the hospitals before someone else did.”

“We deal with a population that’s living longer, not necessarily healthier,” Anderson said. “We see the need to help people with their quality of life and remain at home.”

When someone lives with a chronic illness, the disease taxes them and their caregivers. Some 133 million Americans live with some form of chronic illness, Anderson said. Those conditions can include diabetes, COPD (chronic obstructive pulmonary disease), arthritis — and much more.

“You should not have to wait until you are deemed hospice-eligible to be able to benefit from all those rich resources,” said Matthews, the ICS director. “When you’re suffering from a long, progressive, chronic-type illness, you should be able to have the foundation of support with attention to your symptoms.”

Harrison’s case is an illustration of what “palliative principles” can do for patients, Patel said.

“People forget that to die, you’ve got to still live,” Patel said. “And how you live is still what we control.”

For a time, Harrison said she no longer felt like a woman. In February 2015, being told that she was at high risk for breast cancer, she received a double mastectomy. Cancer had taken everything from her, she thought.

“My womanhood … I feel like a walking ‘it,’ ” Harrison said. “And Mark (Curtis) got me through that part of feeling that way, and why I shouldn’t feel that way.”

Curtis, the ICS advanced practice nurse who offers counseling, says he has 3 to 5 minutes after he first meets with a patient to establish trust and, perhaps, an enduring relationship.

“Don’t die before you’re dead,” Curtis said he tells patients.

About the Author