In late May, Rochester, NY resident Sandra Beckwith visited a good friend experiencing his third bout with cancer. She barely recognized him - even as he stood in his own driveway. He was visibly uncomfortable; he had swollen legs and a distended stomach.
In late May, Rochester, NY resident Sandra Beckwith visited a good
friend experiencing his third bout with cancer. She barely recognized
him - even as he stood in his own driveway. He was visibly
uncomfortable; he had swollen legs and a distended stomach.
He was constipated as a result of the cancer, which was attacking his
colon and liver, and of the toxic chemotherapy drugs. Beckwith asked if
any of his doctors had talked to him about palliative or comfort care to
alleviate these symptoms. He said no, his oncologist told him there was
nothing left to do.
But because of her ongoing work with a campaign called Last Acts,
Beckwith knew otherwise. Last Acts, sponsored by the Robert Wood Johnson
Foundation, is a national coalition aimed at improving end-of-life care
by reaching various audiences.
Beckwith, a professional communicator for Stewart Communications, one of
the three PR firms spearheading the effort, gave her friend a brochure
explaining what palliative care is and what a person should expect from
healthcare providers in terms of symptom relief when, as in this case,
there is no hope for a cure.
Beckwith’s friend found a doctor to help him better manage his symptoms,
she says. He also thought about how he wanted to die. According to his
wishes, ’the night before he died, he was admitted to a hospice room at
a palliative care center where he said his good-byes,’ she says. ’He
made a decision to die in the hospital because he didn’t want his home
to be remembered as his place of death. Last Acts helped him die with
dignity and in peace.’
Multipronged PR effort
Last Acts was started when the Robert Wood Johnson Medical Center funded
a study on how people died in five institutions. The study found more
than half the patients died in hospitals, and nearly half of all were
fed by tube, ventilated on a machine or had a try at resuscitation.
Family members reported that 40% of patients had severe pain most or all
of the time in the last three days of life.
Last Acts is now in its fourth year and has grown from 72 member groups
in 1997 to nearly 500 today. These partners include the American Medical
Association, the American Nurse’s Association, the American Hospital
Association, the Alzheimer’s Association and, most recently, the 500th
member, the American Geriatrics Society.
Slowly but surely, this multipronged PR effort is putting death and
dying on the radar screen and helping people like Beckwith’s friend die
on their own terms. The audiences the communications efforts try to
reach include health professionals, the media, the public, insurance
executives, religious officials and business executives. For example,
chapters on dying are starting to appear in medical texts and
screenwriters are including end-of-life issues in such highly-rated
television shows as NBC’s ER.
And the issue is about to explode in the national media due to a
four-part PBS series entitled On Our Own Terms: Moyers on Dying, slated
to air September 10 through13. (See sidebar.)
Still, in today’s society, few topics remain as taboo - yet as
inevitable - as death and dying. Reshaping conventional attitudes about
end-of-life care involves changing the medical, social and policy
cultures, says D. Michael Ballard, president of Barksdale, Ballard & Co.
in Vienna, VA, another of the three PR agencies involved in the
The basic approach has been divide and conquer, he says. The PR work is
divvied up into three parts: Barksdale Ballard handles consumer outreach
by promoting activity in more than 100 communities, Chicago-based
Stewart Communications is charged with professional and medical
communications and Burness Communications of Bethesda, MD is doing the
media relations and policy work.
According to a June report conducted by George Balch & Associates, Last
Acts is making a dent - building a network and forum that brings
together people involved in end-of-life care - but challenges still
remain, including making itself more visible.
’The media coverage (on end-of-life care and issues) has been A-plus,’
says Mollie Katz, senior associate at Burness Communications. Much of
this coverage was generated because of the studies on how people
Stories have run on National Public Radio, in The New York Times, The
Washington Post and the Los Angeles Times, to name a few.
Still, Katz says, ’despite very large placements, in terms of how this
is registering with the public, we are at the beginning of a long curve
of public acceptance of the issue.’
Ballard agrees. ’Our biggest obstacle is our personal reluctance to talk
about death, to share with our loved ones and family our fears, our
values, our hopes and our concerns,’ he says. ’Too often - most often -
decisions about end-of-life care are made in the intensive care unit or
emergency room of a hospital. What kind of decisions get made in such
pressure- and stress-filled situations? Particularly when the system is
going to direct you towards aggressive curative treatment.’
Last Acts’ first phase was documenting the problem. But the new
challenge is to reach further into the grass roots to communities,
families and individuals.
By encouraging conversation about end-of-life issues among consumer
organizations, faith communities, civic clubs, voluntary health agencies
and others, ’we are working toward an environment where people know what
good quality care is at the end of life, and expect and demand it,’
On the professional side, he explains, the cause is hurt by the very
success of healthcare. ’The focus of the system is on curing the
disease, not treating the person. Turning the system around is like
turning an aircraft carrier. But, we’re doing it one stroke at a
The cause has had a little help from the headline news, riding on the
coattails of the publicity surrounding Jack Kevorkian, the Michigan
doctor who is best known for supporting physician-assisted suicide. But
Ballard is quick to mention that while Kevorkian called attention to
end-of-life issues, his solution is ’outrageous.’
’This is a movement that has its own legs,’ agrees Jill Stewart,
president of Stewart Communications.
While the medical community was more knowledgeable about end-of-life
issues than the general public when the campaign began, ’there was some
individual resistance in the early days because physicians, in
particular, did not believe that their patients were experiencing ’a bad
death,’’ Stewart says.
So far, Stewart Communications has hosted seven conferences that helped
define the issues surrounding end-of-life care. The agency is about to
do seven more to showcase solutions and impressive practices.
Another tactic employed by the group was to create an award honoring
medical textbooks that address the issue well, she says. It’s a big
problem: a study in a recent issue of the Journal of the American
Medical Association found that leading medical textbooks give little or
no information on caring for seriously ill patients at the end of life.
(On average, textbook indexes cited only 2% of their total pages as
pertinent to end-of-life care, the study showed.)
The first award ceremony was held in March 1999, and the next is slated
for February 2001.
On a policy level, Burness is working at encouraging state attorneys
general to pay more attention to these issues and form working
Representatives are also bringing information to Congress about
impressive palliative care programs and hospice care in their
Those involved in the campaign admit that it has presented
But, they say, the issues are starting to get attention, and the
movement is taking on a life of its own.