Editor’s note: There is an emerging conversation about end-of-life issues and the policy changes needed to give people more control over what happens to them in their final days. This series of stories, and a video produced in partnership with Kansas City public television station KCPT, are about that conversation and the role that experts at regional institutions are playing in it. The first story in the series focused on efforts to encourage end-of-life discussions.
A milestone multi-year study published in 1995 startled the medical world when it revealed that about half the hospital doctors treating terminally ill people were unaware when their patients had not wanted aggressive, life-extending treatments and that about half those who died in their care had pain that might have been abated.
Equally shocking, the report found that follow-up efforts to improve the results at the teaching hospitals involved in the study had failed.
The study, known by the acronym SUPPORT, remains the largest and most expensive of those examining end-of-life care in the United States. The Robert Wood Johnson Foundation financed it, and many have credited it with launching the push for palliative care at U.S. hospitals.
Sometimes called “comfort care,” palliative medicine evolved as the norm at hospices, where doctors, chaplains and others long ago became accustomed to working together to make patients as comfortable as possible and ease their suffering, regardless of its source.
“Suffering is not just a physical thing,” said Karren Weichert, head of Midland Care in Topeka, which provides hospice care and other services to those who are terminally ill or seriously debilitated. “It can be social, emotional, spiritual. In hospice, we deal with all of that.”
Changing hospital culture
But at hospitals, where the broadest spectrum of patients and maladies may enter the doors any given day, workflows long have centered on saving and extending life by combating particular diseases or treating traumas. Vital signs are diligently monitored, but pain and anguish may not be.
The effort to add palliative medicine to hospital toolkits so that its solaces are an option for all who need them in Kansas and Missouri, dying or not, remains fledgling though the SUPPORT study is now 20 years old.
By many accounts, the hospital serving the Kansas City region that has best incorporated it is the University of Kansas Medical Center, the only Kansas teaching hospital. In 2008, its palliative medicine program became one of the first in the nation to be accredited, and comfort care principles now are a basic component in its training of new doctors.
KU Hospital has a palliative team of 15 full-time and two part-time workers that includes seven doctors. The team also works with the hospital’s four chaplains and other specialists as needed.
“We’re currently failing to address the potential needs of 75 percent of the patients in our system. So there is a long way to go.”- Dr. Karin Porter-Williamson, a leading member of the KU palliative medicine team
KU Medical Center also has a palliative care program especially for children, known as the KU Kids Healing Place, headed by Kathy Davis, a former schoolteacher.
On call 24-7, Davis might find her weekend interrupted by a summons to the hospital to help counsel the parents of a teenager on life support but soon expected to die because of a car wreck or other trauma. She routinely works with children who are in the advanced stages of cancer, cystic fibrosis, sickle cell anemia and other diseases.
“We are able to start palliative care with children much, much earlier in the disease process than we are with adults,” she said.
Often, Davis said, “we are watching children grow under the big umbrella of serious illness.”
‘Drop in the bucket’
“This year, we’ll do about 1,430 consults in the hospital,” said Dr. Karin Porter-Williamson, a leading member of the KU palliative medicine team and the first KU resident to do a palliative care rotation back in 1999. “But we know that when it comes down to a broad definition of who could benefit from palliative care, we’re only reaching a drop in the bucket.”
Porter-Williamson said a recent survey at the hospital showed that on the sample day there were 130 patients — 19 percent of everyone checked in — who could have been helped with palliative care. But only 26 of the 130 were getting it.
Kansas gets a ‘C’ for palliative care access
The Center to Advance Palliative Care, a national group, has done a state-by-state report card on access to palliative care. The report found that the number of palliative care teams in hospitals had doubled in the past 10 years. But it also cited many bleak statistics. Among them:
- One in four patients report inadequate treatment of pain and shortness of breath.
- One in three families report inadequate emotional support.
- One in three patients report that they received no education on how to treat their pain and other symptoms following a hospital stay.
- One in three patients are not provided with arrangements for follow-up care after hospital discharge.
According to the report, a major barrier to expanding palliative care is the lack of doctors who specialize in it. Although there is on average a cardiologist for every 71 people with a heart attack and an oncologist for every 141 new cancer patients, the report said, “there is only one palliative medicine physician for every 1,200 persons with a serious or life-threatening illness.”
The group gave Kansas a C, while Missouri and Colorado received a B. Nebraska got an A and Oklahoma a D. Delaware and Mississippi were the only states to receive an F.
“We’re currently failing to address the potential needs of 75 percent of the patients in our system,” she said. “So there is a long way to go.”
Other hospitals in the region also are adopting palliative care but generally are not considered as far along.
“The only place (in the Kansas region) that is doing it well is KU,” said John Carney, chief executive of the Center for Practical Bioethics in Kansas City, Mo. “The problem has been that physician leadership (in hospitals) has been slow coming.”
Carney said a particular doctor might “champion” palliative care at a particular hospital and make some progress but then move on, leaving momentum stalled and shoes that may go unfilled.
Talking about it
Experts say a cornerstone of palliative care is good communication between the doctor and patient or the patient’s proxy about the patient’s values and wishes. But doctors mostly are trained and get paid to act rather than listen. And patients often are too intimidated or don’t know how to tell medical workers what they need or expect.
“As a subspecialty, (palliative care) is relatively brand-new,” Carney said. “And there’s no good, existing payment system in the CMS (Medicare/Medicaid) system for listening. It’s not valued in the system … but that’s changing,” in part because of incentives in the Affordable Care Act, commonly known as Obamacare.
Hospice physicians, such as Dr. David Wensel at Midland Care in Topeka, have been doing palliative care for years and have been some of the strongest advocates for extending its reach. Wensel, for example, has helped guide palliative care efforts at Topeka’s St. Francis Health hospital and elsewhere.
He said hospice doctors even now sometimes encounter misunderstanding from hospital colleagues. And palliative care, in the minds of many, is associated with hospice.
“In the medical community they often view hospice as giving up,” he said. “And some in the community even believe hospice kills patients. Part of that was born out of the problem with medical education, though that is changing. When I was in med school you only had a one-hour lecture on hospice care.”
Like turning an aircraft carrier
Wensel praised the KU palliative care team and the efforts at the school to incorporate palliative medicine in its training.
“There are some things being done,” he said. “But it’s like you’ve got this big aircraft carrier you’re trying to turn or a train on the tracks.”
Porter-Williamson agreed that to improve the system, more can be done to educate providers and reshape some hospital customs, even at KU. But she said it also is important for prospective patients to “empower themselves to know what I need to talk to my doctor about.”
She said a national initiative known as the Conversation Project offers good tools for people who want some control over the care they get when they are seriously ill or dying. KU Medical Center, she said, is part of the Conversation Ready project launched by the Institute for Healthcare Improvement. Participating hospitals pledge “to be ready” to receive and act on expressed preferences that are based on “what’s most important” to the patient.
KU also is working with the Center for Practical Bioethics to encourage the use of Transportable Physician Orders for Patient Preferences, or TPOPP. These doctor orders are prepared after a doctor and patient have talked about the person’s values and wishes. The forms are encouraged for anyone who is seriously ill, especially those with strong possibilities of dying within a year.
Topeka nonprofit a national example
Midland Care, the Topeka nonprofit where Wensel works, is one of the few organizations in the nation that offers hospice and Program of All-Inclusive Care for the Elderly (PACE) services.
PACE is a federal program designed to provide wraparound services for frail elderly or disabled people, usually those deemed eligible for both Medicare and Medicaid.
“We are kind of unique in the country,” said Midland Care CEO Weichert.
Some consider the combination a possible model for improving the final years of life, particularly for lower-income people who are old and chronically ill.
The organization is paid capitated rates for its PACE members, which means that Midland must provide or arrange for all their care from the time they enter the program until they die for set fees. For example, if a PACE member needs a ride to the dentist or help showering at home or is checked into the hospital intensive care unit or needs hospice care, Midland provides the service or pays the bill for someone else to do it.
Weichert said the palliative medicine developed at Midland’s hospice has logically been extended to those in its PACE program. Palliative medicine’s goals of communicating well with patients or clients and keeping them happy and pain-free as long as possible are as applicable for the elderly with multiple chronic conditions as they are for those who are known to be dying, she said.
She said it also is comforting when a PACE member graduates to hospice or is on the cusp because there is the benefit of longer familiarity for the staff and PACE member. Hospice nurses might be dispatched to a PACE member’s home to help with medication, for example.
“You have to provide end-of-life care in PACE,” Weichert said, “because you have to provide the full continuum of services.”
Weichert said funding remains a constant problem. Rates paid by the Kansas Medicaid program, she said, are second lowest in the country.
Midland last year won a state contract to expand its PACE services into Lyon, Marshall and Nemaha counties.
Watch the KCPT video on end-of-life issues:
— Video produced by KCPT Videographer Dave Burkhardt.