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As healthcare debate continues, end-of-life care becomes critical component

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Friday, October 30, 2009

By Eileen Connelly, OSU and David Eck

ARCHDIOCESE — There is no easy way to discuss end-of-life care, and with the current debate over healthcare insurance reform, the issues become even more complicated.

Some hospice officials say the debate around healthcare and end-of-life issues hasn’t cast palliative care in a negative light but may actually increase the awareness and visibility of hospice.

“I think anytime there’s a death and dying issue, that forces people to take a good look at it,” said Herb Wilker, hospice chaplain and bereavement coordinator at St. Rita’s Medical Center in Lima. “As in cases in the past, it forces us to look at where we are in our lives.”

Hospice isn’t viewed negatively, Wilker said, adding that it provides aggressive medical care when dealing with life-threatening conditions.

“When hospice becomes involved it is after all treatment, attempts to treat terminal illness, have become unsuccessful,” Wilker said. “It’s a special level of care that is available to people who are facing their own terminal illness, their death and mortality.”

Hospice originated in England in 1968 and came to the United States in 1974. In England terminally ill people were treated in an institution. In the United States it was focused on in-home care of patients.

Hospice teams help terminally ill patients in the later stages of disease — and their families — deal with the end-of-life issues such as advanced planning, emotional issues and coping with death. Team members also talk with patients and families about their fears and wishes as illnesses progress.

The number of hospices and people using them continues to increase, Wilker said. In many hospices a patient must typically have fewer than six months to live in order to be eligible for services. Patients are typically entering a hospice later in the disease process, and some are actively dying, he added.

The healthcare debate and uncertainty about any eventual bill is prompting some anxiety that patients’ wishes and fears might not be heard and carried out, he added.

“I think hospice should be part of this healthcare debate.  I don’t think it should be viewed as a negative thing,” Wilker said. “I think in hospice, we’re continuing to do what we do best.”

While hospice focuses on end-of-life issues, palliative care is sometimes used to transition chronically ill patients from aggressive treatment to hospice.

Last June, the Catholic Health Association’s board of trustees issued a statement that palliative care must be part of healthcare reform in the United States.

Colleen Scanlon, an attorney who previously worked as a palliative care nurse, said such care can be “a model to improve quality and manage scarce resources” as policymakers debate health care reform. Scanlon is senior vice president for advocacy at Catholic Health Initiatives in Denver. She represented both CHA and the Supportive Care Coalition: Pursuing Excellence in Palliative Care, a coalition of 19 Catholic health systems.

She said research shows that in many cases people hospitalized with life-threatening illness “receive expensive, aggressive medical intervention that is often unwanted and that diminishes their quality of life.”

Given that the estimated 90 million Americans now living with serious and life-threatening illnesses is expected to double over the next 25 years, “we must find a better way to care for the seriously ill and dying,” Scanlon said.

Palliative care manages symptoms while physicians continue treatment. Palliative care teams also act as an advocate for patients and their families.

“It’s putting that big picture into place so when the patient gets sick again we have a plan in place as opposed to simply returning to the emergency room and starting the cycle all over again,” said Sandi Webb, a palliative care nurse at Good Samaritan Hospital in Cincinnati. “Our intervention is not likely to be one conversation. It’s a process.”

Palliative care doesn’t exclude any treatment, and the planning is not always for end of life, Webb said. Still, if patients become chronically ill, conversations with families and their patients may include quality of life issues and advanced directives.

Palliative care is the larger entity, she said, explaining that hospice patients get palliative care, but not all palliative care patients end up in hospice.

Cathy Follmer, corporate director of continuum care service for Catholic Healthcare Partners, spoke of the need for both education and open communication in relation to palliative care.

“We have the moral obligation to get the word out into the community so people can be informed about their end-of-life choices,” she said. “We also need to be respectful and mindful of the cultural and religious differences of the various communities. One thing I tell the nurses is that we have a right to our opinion, but it’s not about us. It’s about the patient. It’s their body.”

Palliative care, which was instituted at CHP facilities in the late 1990s, focuses on educating patients and their families, but “is also about the journey,” Follmer said. “If you’re diagnosed with a chronic disease, it’s not just the end-of-life choices, but also how the disease will progress. Palliative care gives patients and their families options. In order to deliver quality care and a positive patient experience, you have to have patients who are informed.”

“When the patient hasn’t communicated his or her wishes to the family, it leaves everything unsettled,” she added. “Family members feel guilty, so they want everything done — but they don’t always understand what everything is. Their fear of death can end up doing the patient some harm. You can end up venting someone until the cows come home, knowing that it’s futile care.”

Follmer said it often seems easier for Catholics to make decisions regarding comfort versus cure saying, “They find strength in their faith to make the decision.”

In addition to striving to see that patients and their families are kept informed and treated with respect as they make such decisions, CHP has also been working to address the issue of payment reform, said Orest Holubec, director of external communications.

CHP’s efforts mirror those of the CHA’s in addressing the component of health insurance reform that deals with how providers are paid by the federal government by Medicare.

“We’re currently paid by output, not outcomes,” Holubec explained. “We’ve been working to change that so that we’re being paid by the quality of care we provide and not the number of patients admitted or the number of procedures performed.”

“For example,” he continued, “regarding the end of life, we end up getting paid more by the federal government if people stay in ICU longer, even if it’s not the appropriate place for them to end their life journey.”

“End-of-life care or palliative care teams are not reimbursed,” Holubec said. “We do it because it’s the right thing to do but we also must be careful stewards of our finances.”

Holubec also stressed the importance of keeping patients informed and involved in their own care.

Ida Schick, director of the graduate program in health services administration at Xavier University and an ethicist who works in clinical, as well as organizational ethics, explains there are a number of interrelated topics dealing with end-of-life issues. These include: advance directives; communication; conflict between professionals and patients or between professionals and patient families; failure to transfer in a timely manner to hospice; and the use of ICUs.

Schick says she stresses to her students the importance of advance directives — the legal documents that tell doctors and family members what a person wants done in the event said person becomes incapable of communicating his or her wishes.

“Communication is essential to advance directives,” she said. “One needs to discuss them with one’s physician, family and with the person who becomes the surrogate decision maker and is so named in the Power of Attorney for healthcare. Primary care physicians, especially family practitioners and internists, should raise the topic of advance directives with their patients. The topic should be raised early when a person is healthy and, if the discussion doesn’t happen then, it should be raised at the early diagnosis of a disease, before a person becomes a patient in a hospital.”

The conflicts she has seen most often are those between the patient’s family and the physician or physicians. Generally, a family member wants additional medical treatment that in the physician’s experience would be “futile,” which Schick describes as a misunderstood term.

“For some, it means there is no physiological benefit,” she explained. “For others, futility is patient determined or surrogate determined. It is really not either exclusively.”

There are other factors that influence the notion of futility, Schick said. “One is that often family members need to ask forgiveness for some past failure and want the patient to live so that amends can be made. Another is that the media tout new advancements and inflate the public’s hopes for so-called miracles. And so, families may ask for more treatment in hopes of a ‘miracle.’ ”

What, then, is futility? She says it is “an assessment based on the knowledge and expertise of the medical professional regarding medical effectiveness and the patient’s assessment of burdens and benefits.”

“Professionals need to be cautious, particularly in the use of the words ‘We can’t do more.’ More can be done in terms of caring. Caring does not exclude treatments but uses treatments that control pain, make a patient comfortable, or serve other needs.”

Schick also noted that physicians may be reluctant to refer patients to a hospice out of concern that they are “giving up” on the patient or may be sued by his or her family. In fact, the opposite is true, she said, noting that hospice is more expert in treating pain and making patients and families comfortable; it allows the patient to live as full a life as possible in the time he or she has remaining and provides specific treatments that relate to the disease and its effects.

Many ethics committees are currently collaborating with ICU physicians and staffs to look at the mission or purpose of intensive care units and their utilization, Schick said.

Schick believes educating professionals and the public around these key issues regarding end-of-life care would improve the treatment of patients and families geometrically and the cost of health care would be positively affected.

“Progress in these areas is being made,” she said. “There are courses in medical schools and offered by hospitals and professional organizations about these topics. Process improvement is working in many health care facilities.”

“The escalation of health care costs can not be controlled by any one measure,” Schick added. “Certainly appropriate end-of-life care will have an impact on cost, but cost control is not the reason for improving care at the end of life; it may be a consequence.”

Eileen Connelly, OSU, can be reached at [email protected] and David Eck can be reached at [email protected].

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