Deseret News
The dying aren't well cared for, poll finds
Thursday, October 04, 2001
Patients could stay home; pain can be controlled
By Lois M. Collins
Deseret News staff writer
A survey on end-of-life care in Utah indicates many Utahns are dying
in pain that could be controlled, and they away from the familiar
surroundings for which they long.
The survey was conducted by the Partnership to Improve End-of-Life
Care in Utah, a coalition of agencies that deal with people in their final
days. The coalition hopes the survey will help it do its job better and
fundamentally change both practices and attitudes around death. According
to partnership spokeswoman Maureen Henry, the analysis was based on
interviews with surviving family members of 100 randomly selected adult
deaths, questioned six months after a loved one had died.
It was conducted against a background of national studies that show
patient and family preferences for end-of-life treatment are frequently
either unknown or are disregarded and that palliative and hospice care is
"too little, too late." National studies also indicate that family members
and patients are often given unclear or overly optimistic prognoses.
The latter occurs in part because it's hard, emotionally, to tell
families that a patient is terminal. And it's a message family members
don't want to receive, Henry said.
A terminal diagnosis is "sometimes construed as no hope," said Dr.
Jay Jacobson, a medical ethicist who heads the partnership. "We're working
on the reconstruction of hope." That, he said, is seeing that "death,
dying and loss are as gentle and well-managed as they can be. Those are
achievable hopes."
The Utah survey found most of those loved ones had said they'd like
to die at home, but only 37 percent did. That number is high, compared to
the national average. Most died in nursing homes or hospitals, often
because of a sudden change in condition or need for more medical care than
could be provided.
Two-thirds of the decedents experienced pain in their last month of
life, and 61 percent of those surveyed believed that pain could have been
controlled.
Pain control has been somewhat controversial. Doctors have been
tried for giving patients too much pain medication, while others have been
tried on charges of elder abuse for failing to control pain. Advocates say
concerns about addiction are silly when a patient is dying and in great
misery.
Although 81 percent of the respondents said they were aware of the
availability of hospice services, only 34 percent of those who were dying
actually received the care, and two-thirds of those had hospice services
for less than a month, although more than half of the family members knew
for more than three months that the illness would be fatal.
"Three months is a generous amount of time to think about planning,"
said Jacobson. Enough time to set up home health services, make hospice
arrangements, "even enough time to make funeral arrangements and take care
of legal issues. It could be a very productive, satisfying time.
"It's a bad strategy not to start early," he added, because "it
takes a while to prepare for death. And one of the lovely things about
hospice is you get to know the care providers. There are upsides to
involving them early."
There are also challenges. For one things, many doctors are so
focused on treating and curing illness that when it becomes clear that's
not going to happen, they don't know much about the services available,
Jacobson said. And they can seem to lose interest. "The patient may feel
quite abandoned."
Particularly if there's pain, it may be time to seek out a
specialist, Henry said. "There are specialists in pain management and
symptom control, but even some physicians don't know there are certified
palliative care specialists in the state."
© 2001 Deseret News Publishing Company