Panel Tackles Media’s, Health Care Providers’ Roles in End-of-Life Issues, What Happens When It’s Close to Home
In a panel discussion last Friday at one of the National Association of Social Workers’ (NASW) tri-annual delegate assemblies, end-of-life care experts, journalists, and a congressional legislative staffer shared their experiences in “covering, planning, or delivering end-of-life care” to explore “the media’s role in changing public perception of these issues.” That was the billing NASW gave the discussion, which was moderated by NASW Executive Director Elizabeth Clark; NAHC Report staff attended the event. Clark began by focusing the panel on what effect, exactly, the recent media coverage of end-of-life issues had on the public, and this question cannot be answered without some reference to the passing of Terri Schiavo (NAHC Report 4/8/05). “Do you think the media attention changed the common perception of end-of-life care, or simply brought more attention to it?” Clark asked.
Media coverage has “brought a lot of attention and a lot of public interest in end-of-life
issues, though maybe only a small piece of end-of-life issues,” responded Kathy Brandt of the National Hospice and Palliative Care Organization. Brandt reinforced that there has been a dramatic increase in interest in end-of-life issues, measured by a spike in related website hits and calls to organizations that deal with these issues (NAHC Report 6/20/05). A goal for the longterm, she said, is to increase people’s comfort level with speaking about end-of-life issues. That is not so easily done and is not the natural tendency; for most, speaking about death and dying is no favorite topic.
Also taking part in the discussion was Jon Cooper from the office of Sen. Bill Nelson, who has introduced S. 347, the “Advance Directives Improvement and Education Act of 2005″ (NAHC Report 4/8/05). The bill would allow for portability of an individual’s advance directive from state to state, which is seen as a major limitation of advance directives, living wills, and similar documents. The legislation also would expand the new palliative consult provision established under the Medicare Prescription Drug, Improvement, and Modernization Act of 2003 (NAHC Report 12/15/04) by allowing physicians (rather than only hospice physicians) to provide an end-of-life care consultation to a patient.
Cooper spoke about advance directives and cited an example of dwindling national attention to end-of-life care issues, although he noted that interest remains above what it was before the events leading up to Terri Schiavo’s death. “Prior to Schiavo and the national debate,” a Florida nonprofit had received about 50 requests per day for information on documenting end-of-life care wishes; during the Schiavo coverage, that swelled to about 6,000 requests per day. Now, the nonprofit is receiving “about 100 requests per day,” according to Cooper, “so it’s falling back down to a level that’s still higher than when we started, but it’s not 6,000 hits a day.” Regarding the still higher than usual interest in end-of-life needs, “I think the issue we’re all grappling today with is whether this effect is for the long term or the short term,” he said, describing the opportunity and challenge of continuing the debate.
Eleanor Clift, a contributing editor for Newsweek, was asked about balancing the “human sides” of the story in reporting on end-of-life issues. She referenced the two to three week “feeding frenzy” of Schiavo headlines, during which an emergency session of Congress was called and President George W. Bush made a special trip to Washington to sign legislation allowing reconsideration of whether to permit removal of Schiavo’s feeding tube. “It was quite an emotional roller coaster, I think, for anybody watching the case, and certainly for the people directly involved,” Clift recalled.
Around the same time, the experience was to affect Clift personally. She explained that her husband, “who had successfully fought metastatic cancer for five years, finally was beginning to lose his battle, and we had wanted a home hospice situation.” That gave some new perspective, Clift said: “While I was being called to comment on the Terri Schiavo case, I felt like I was living in a parallel situation in my own life, and I remember very keenly the debate about removal of the feeding tube.” The effect of removing a persistent vegetative state patient’s feeding tube to allow the patient to die whether there would be any level of cognition and pain involved was a major focus of disagreement over what could be done, and what to do, with Schiavo.
“Critics were saying it was heartless to starve her to death, and then I’d have conversations with the primary care nurse, who explained that when you’re in that state at the end of life, you’re not feeling hunger pains,” Clift said, recounting her own experience with the decision. “I remember thinking well, intellectually, that I thought this was an appropriate medical step. I was really happy that the nurse who was taking care of my husband was thinking along those lines.” Clift was spared having to make the decision, since as things turned out her husband “ate quite heartily until about three days before he died.”
Even so, the experience affected Clift in her work. “I kind of watched what I said; I wasn’t that outspoken about the Schiavo case,” she noted. On the public affairs television program The McLaughlin Group, “I certainly supported the judge’s rulings and I did make my position known, but I wasn’t getting up on a very big soap box,” Clift ceded. Instead, she “mostly wrote about the politics” involved in the Schiavo case, and during the panel discussion made note of a poll showing that “82 percent of those surveyed felt the government had no business in these kinds of decisions.”
As a journalist, Clift stated she is “always aware of what my private interests are, and sometimes they’re appropriate to put out there; I’m an opinion writer, I’m supposed to express my opinions. But sometimes, the situation is so emotional … there are a lot of very complicated human reactions that you have to deal with, and we are just now as a country trying to evolve laws that can keep up with the science that we’re able to do and the way that we’re able to extend life.”
Ceci Connolly, a national staff writer with The Washington Post who covered the Schiavo incident, maintained, “Most of us who believe in the journalism business tend to be curious. We like to learn as much as we can; we’re open to a lot of new experiences. And so in the vast majority of the stories we do, we don’t go in with a preconceived notion.” Connolly pointed out that “even in a very highly charged, emotional kind of debate or running story like the Schiavo case,” she and her colleagues “are able to separate out whatever personal views they might have, and really just try to present as many views as we can.”
Whether or not she agrees with a particular view expressed, “that person said it, they wanted it in the newspaper, they wanted it out there, and that’s my job,” Connolly said. “It’s not my job to decide if a comment is right or wrong or a view is right or wrong, but to put it all out there and give the readers a little bit of credit. Then they can decide for themselves what they think of it.” Describing the process by which stories on highly charged issues make it to press at high level news outlets like The Post and meanwhile, fairly represent all sides’ opinions Connolly said the stories “will be read by several smart, experienced, talented bosses who are also asking you questions along the way, double-checking, really trying to guard against one point of view being more represented than another.”
Still, having witnessed the effect that the Schiavo coverage had on the workers at Schiavo’s hospice, Connolly confessed there were times she wished that the media or hospice advocates would have taken a more forceful stand to support removal of Schiavo’s feeding tube or that more air time had been given to moderate views. Connolly described what at first she had found a somewhat eerie sense of normalcy with death that the workers at Schiavo’s hospice had, as well as what she characterized as tremendous emotional and mental turmoil some of them suffered in the months following the torrent of Schiavo headlines. One worker “was seeing a trauma therapist; after all, she had been accused of starving someone to death,” Connolly said.
AARP Publications Editor-in-Chief Hugh Delehanty expressed being “revolted” by political action related to the Schiavo case and maintained that for his part, he’s worked to alter the perception of end-of-life care as a “burden.” Along with AARP’s Elinor Ginzler, Delehanty coauthored the book “Caring for Your Parents: The Complete AARP Guide,” which he said attempts to break the stereotype of caregiving and end-of-life care as “a burden, as this stressful moment in life. Certainly that’s true but it wasn’t my experience.” Caring for his parents, Delehanty maintained, brought with it “a moment of transformation for me, for my father, for my brothers who were also involved in care, and other people. I wanted to communicate some of that in the book, to shift people’s mindsets about caregiving.”
Delehanty spoke candidly about how his relationship with his father had grown at the time. “My father was somebody who fought in World War II and saw a lot of death good friends dying and had been around a lot of death, but had not really ‘gone through’ death, had never really thought about death in his own life,” Delehanty said. “With [my father], we went through the whole process of an advance directive. It was all kind of pro forma with him,” Delehanty explained, and had not been easy. “He was just kind of ‘following the road’ of what you are supposed to think about death.”
The moment of transformation came for Delehanty when his father was hospitalized and temporarily became unconscious, and a feeding tube was inserted. Regaining consciousness, Delehanty’s father became combative, pulling out the tube and resisting treatment, so Delehanty called in the social worker that had been visiting his father to try to get through about the advance directive.
“My father really didn’t want to talk about death. At that time, my father and I had a really contentious relationship,” Delehanty said. “The social worker asked him, ‘Okay, if you do this, do you realize that your son is going to make all your decisions about your life from this moment on?’ He said yes, and she said, ‘Do you trust your son to do that?’ And he said, ‘Okay.’ For me that was a major thing, because my father never said that to me before, that he had trust in me. For me, in that moment in the conversation, it had changed; I saw that our relationship had changed.”
Kathy Smolinski, a senior clinical social worker at the Sidney Kimmel Cancer Center at Johns Hopkins, spoke about how things are different now at [the Kimmel Cancer Center] from the perspective of social work practice since Terri Schiavo’s death and the ensuing national end-of-life discussion. She said that at the Kimmel Cancer Center it has become standard procedure right from the waiting room to have clinicians available to talk with patients and families about advance directives. “We’ve just made it part and parcel of our practice at the cancer center,” Smolinski noted. In addition, the center has begun reviewing its policies regarding end-of-life issues, “really looking to see that policies and procedures are in place that support the staff, and how to have these kinds of discussions in a way that is helpful to patients and families.”
Smolinski contended that as the center has, it is necessary to make end-of-life discussions “part and parcel” of health care practice. “The more we make it standard practice, the more we disarm patients, the less they worry that we’re saying we saw something on their CAT (computed axial tomography) scan, and the more they expect it, it establishes a relationship of trust,” she maintained. Smolinski suggested that providers identify what the goals of patients and families are in the care preferences they specify. “We have to start talking about these kinds of discussions in a framework of establishing roles of care,” she said, adding that “what’s most important is that we have a goal that we’re trying to achieve … I think it’s important for patients and families to start talking in that type of language. I think it’s imperative and rests with the health care professional to bring the topic up.”
For more information about the end-of-life discussion panel or NASW’s delegate assembly, call NASW’s Communications Office at (202) 336-8228 or email
media@naswdc.org.
