HEALTHCARE: Straight talk on death and dying - Many people die in hospitals alone and in pain. For four years, the Last Acts PR campaign has sought to improve end-of-life care in the United States. Denise Mann reports on how the three PR agencies involved

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.

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

campaign.



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

die.



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.





Raising consciousness



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,’

Ballard says.



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

time.’



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

groups.



Representatives are also bringing information to Congress about

impressive palliative care programs and hospice care in their

districts.



Those involved in the campaign admit that it has presented

challenges.



But, they say, the issues are starting to get attention, and the

movement is taking on a life of its own.



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