Deseret News, Thursday, June 27, 2002
Changing the face of death
Coalition wants to put a hopeful twist on end-of-life care
By Lois M. Collins
Deseret News staff writer
As Niek Lupescu was dying in his home
in Holland, family members sat nearby, putting puzzles together at the dining
room table. A sibling listened to music; another wrote letters. His
grandchildren were running in and out, playing. Lupescu's sister, Audrey, and her husband, Jan Roberts, went there to be with
him while he died. And it was a "good" death, said Jan Roberts, who
runs a hospice in Vernal and is something of an expert on death. When disease comes and medicine can no longer stave off the inevitable, a
good death is the best that one can ask for, according to the Partnership to
Improve End-of-Life Care in Utah, a coalition of individuals and agencies
collaborating to take death out of the closet and put it where they say it
belongs: in the center of life. They hope to improve how we approach death and serious illness, relieve
suffering and care for families. A terminal diagnosis may be construed as the death of hope. "We're
working on the reconstruction of hope," said Dr. Jay Jacobson, a medical
ethicist and infectious disease and internal medicine physician who heads the
effort. The goal is that "death, dying and loss are as gentle and
well-managed as they can be. Those are achievable hopes." Roberts' brother-in-law — also his very close friend — experienced what
death should be, said Roberts, who was surprised to find hospice service doesn't
exist in Holland. "We need to help people understand that death is just as
much a part of life as going to the grocery store." It was a marked contrast to the death of another brother-in-law, who was
taken by a massive heart attack. His widow had no warning, no time to say
goodbye. Even five years later, she told Roberts, "I can't seem to get over
this." Death and how society approaches it have changed over the past century. One
hundred years ago, the average person lived a mere 46 years, compared with 76 in
2000. Back then, people died of infection, accident and childbirth. Today they
succumb to heart disease, cancer and stroke or dementia. Most people died at
home then; now they die in hospitals and nursing homes, though surveys show the
vast majority would prefer to die at home. Knowing that is important, said Jacobson. "We should be looking for ways
to enable people to die where they want, on their own terms, with dignity,"
he said. That's central to the definition of a good death, which partnership
coordinator Maureen Henry said should be "free from avoidable suffering for
patients, families and caregivers." It should honor patient and family
wishes while meeting clinical, cultural and ethical standards. Those wishes can range from wanting to be resuscitated to rejecting a portion
of care because it conflicts with a patient's personal beliefs. A Jehovah's
Witness woman, for example, opted to have heart surgery but would not take a
blood transfusion afterward because she doesn't believe in accepting blood
products. It can be a matter of accepting or rejecting recommended treatment. Sjon
Colby, of North Salt Lake, turned down surgery and, in fact, most Western
medicine, to treat his prostate cancer. He's been widely criticized by
physicians for his choice, but it feels right for him, he said, and he can live
with that. Max Hobbs has chosen in-patient hospice care at Residence of CareSource in
Salt Lake City; others make very different choices. A good death honors and protects those who are dying, and the care conveys by
word and action that what's important is who they are and not their physical
attributes as they cope with physical insults and decline. It's what an 80-year-old Salt Lake man, who asked that his name not be used,
is trying to give his 75-year-old wife. She suffers from scleroderma and all the
tissue linings in her body are inflamed. Her lungs keep collapsing. She's
bedridden now, approaching the end of what has been a decades-long period of
decline. They don't talk about what's happening to her; it's been present through much
of their half-century together. But he knows that only death will cure her; he
wants the passing to be as peaceful as possible. He's one of hundreds of Utahns relying on a combination of caring doctors and
nurses, home-health assistants, family members and prayer to ease a loved one's
journey from one life to the next, he said. Unfortunately, "bad" deaths also occur. They include: — Needless suffering. — Not honoring a patient's or family's wishes or values. — Unwanted, senseless or invasive medical treatment. Death doesn't have to be sudden and unexpected to be "bad,"
according to Michaelene Pendleton, whose mom, Jeanne Smith, died nearly two
years ago in almost unbearable pain from liver and lung cancer. Even the
"good-death" features — the loving family, support of kind and
dedicated hospice workers — couldn't overcome the fact that she died in agony. Failure to adequately control pain is just one of the formidable barriers to
a good death. Sometimes physicians are not well trained in end-of-life care;
they've spent their entire lives fighting death and don't know how to help
patients who want to exit gracefully. Patients and families may not be well-informed about the patient's medical
reality or treatment options. They don't know what to expect in the way of
physical changes as death approaches. Patient preferences may not have been expressed, and if they are shared, they
may not be honored. Health-care providers at the end of life often didn't know
the patient "as he really was," and can't help that patient on that
level. Often emotional or spiritual needs are overlooked. And loved ones, caught
up in the drama and sorrow, don't know how to cope with their grief, both during
and after what can be a long winding-down season. Mark Allison, chaplain at University Hospital in Salt Lake City, has seen his
share of death professionally as a chaplain in hospice, the military and in
hospitals. Achieving a good death isn't always possible, he said, but it's
"what we ought to shoot for." Last week, he witnessed several "good" deaths, including: an
89-year-old woman who had a massive stroke. Her entire family gathered simply to
love her. They celebrated her long and happy life, and they honored her requests
of what she did and didn't want at the end without contention among themselves.
"It was a generational mix of significant relationships," Allison
said. Or the 32-year-old man who knew exactly what he wanted: to live long enough
to gather in his home with family and friends and address them all one last
time. He wanted his pain controlled. Other than that, he wanted to be allowed to
let go peacefully. With family support and help from his health-care providers,
he was able, with hospice care, to go home, his pain under control. Good deaths, Roberts said, are sad but seldom somber. Families seem to deal with death best when they have some time to get used to
the idea, take care of personal details, talk to one another, love and
acknowledge that person. The exception, according to Allison, is with
Alzheimer's disease and dementia. "Alzheimer's is a hard journey for
everyone. And an anticipated death is easier to mourn and manage than an
unanticipated death that just rocks your boat and knocks you upside down." Longevity means little, Allison said. What counts is the depth of life and
relationships, not duration.
© 2002 Deseret News Publishing Company