In Maine, many rural areas are defined not by
name, but by their township and region numbers.
Directions often don't include street names or route
numbers, but rather rely on landmarks familiar to those who live there,
such as the Jones farm and the old general store.
This lifestyle, so treasured by Mainers, often
creates complications when it comes to accessing medical care.
Increasingly, the question has become whether you can get there from
here.
"There are the same ethical questions (as in big
cities), but Maine's different because of its rural location and small
towns," says University of Maine Associate Professor of Philosophy
Jessica Miller. "Rural and urban areas share many ethical issues in
healthcare, but some issues, like conflicts presented by overlapping
relationships, are unique to rural settings. And others, like access to
healthcare, can be more pressing in rural areas due to geography or
economics."
Maine may be one of the least racially diverse
states in the nation, but socioeconomic and cultural differences abound
from Fort Kent to Bangor to Kittery. Providing appropriate healthcare to
the residents of the region oftentimes is complicated by financial and
employment status, family circumstances and the Maine tradition of
independence.
As a result, healthcare providers find themselves
having to help patients weigh the feasibility of pursuing high-end
medical treatment often available only a long way from home and their
support systems, versus more reasonable treatment available locally that
would be sufficient for the patient's desired quality of life. The
latter often requires less extensive follow-up care or travel.
These are issues that Miller, whose research focuses
on ethical issues in healthcare, finds intriguing. They are
circumstances that aren't often considered in bioethical discussions and
studies that mostly focus on urban settings.
"It's too bad that most bioethics researchers and
scholars assume an urban setting because they miss out on unique needs
and challenges of doing bioethics in a more rural area," Miller says.
Miller has been able to incorporate her interest in
medical ethics and rural healthcare into her work, both on campus when
teaching biomedical ethics, and off campus in Bangor as Eastern Maine
Medical Center's clinical ethicist.
Part of the problem is ensuring that people have access to
healthcare, which is a struggle that the entire country is facing with
more than 47 million people now uninsured, but Miller says there's more
to making people healthy than going to a doctor. Even if someone has
health insurance, it doesn't mean he or she has access to proper
healthcare services.
"Nobody is really happy right now with the current
system, and that's something I've seen change in the last 10 years,"
Miller says. "The United States spends a lot of money on healthcare, and
the returns aren't that great."
Miller says providing basic healthcare to all
residents is a start to improving the system, but it isn't the magic
bullet to better health.
"We know, for example, that unemployment is
associated with worse health, regardless of access to healthcare. It has
to be something else, not just providing more access to healthcare,"
Miller says. "We need to look at the social determinants of health."
For example, what happens when a patient who lives
alone in the woods is ready to be discharged from the hospital with a
post–recovery regimen that is difficult to self-administer? What's best
for the patient in this situation?
When a primary care physician in rural Maine retires
or relocates, an already overstressed system has to absorb hundreds more
patients. All the health insurance in the world won't help if you can't
find a doctor who is taking new patients, Miller says.
Researchers are beginning to understand that social
status and factors not directly related to a person's immediate health
are part of the healthcare crisis of America.
"There's a lot more than just healthcare to
promoting health," Miller says.
Providing equal and ethical healthcare can sometimes be a
challenge. That's why Eastern Maine Medical Center created an Ethics
Advisory Committee in 2006, and more recently hired Miller as the
on-staff clinical ethicist.
"We're not the ethics police. We don't make decisions but rather
facilitate decisions made by patients, families and providers," Miller
says of the committee.
Instead, the group uses its expertise to come up
with possible options for the caregiver, the patient and often the
patient's family.
In addition to case consultation, the committee
members are responsible for educating themselves and the hospital staff
on ethical issues in healthcare, as well as helping to review and draft
policies.
"We're an advisory panel only. We're interested in
getting the most ethical outcomes in patient care," Miller says. "We're
really focused on the patient."
But providing the best options to doctors and
patients can be difficult, particularly when there are circumstances
outside what is medically best for a patient that play a role in the
final decision making process.
In Maine, one of those concerns is that families
many times have to travel long distances just to get to the hospital. If
a relative has to go out of state for care, it might be impossible for
family members to go with him or her.
Who will run the farm? Who will pay for the gas and
hotel room? Who will take care of the children or ailing parents who
have to stay behind?
In some cases, the most ethical option and final decision of the
patient, caregiver and family might not be the most medically advanced,
but in the end is the best outcome.
For example, there is no outpatient care in Maine
for someone on a ventilator, requiring patients to go out of state.
Families many times have to travel long distances
just to get to a hospital.
A one-way trip from Presque Isle to Bangor is
roughly 160 miles. A patient coming from Fort Kent has a one-way trip of
nearly 200 miles. With this in mind, it can sometimes be difficult for
family members to travel to Bangor to discuss care options and be with
their loved one, let alone travel out of state for more extensive
treatment.
"That's a huge issue if all their family and loved
ones live in Presque Isle," Miller says.
For some residents of Maine, just getting to Eastern Maine
Medical Center, which serves two-thirds of the state, can be as
challenging and complicated as going out of state for healthcare.
"The family is an important resource for staff who
want to know what is best for a patient who cannot speak for him or
herself, but it can be difficult to have a family meeting when family
members live hours away and can't get to the hospital," Miller says.
"People aren't just a subway ride away."
Getting family input requires creativity on the part
of the whole patient care team, including nurses, social workers,
physicians and others, she says.
Ethical conflicts also can arise when patients and
caregivers have more than a patient-doctor relationship. Small towns are
a lot like the bar on Cheers; everybody knows your name — and your
parents, your children, what kind of car you drive, where you went to
eat last night.
"A lot of times, patients and caregivers are related
to each other on more than that level," Miller says. "That's one set of
ethical issues that really arises quite a bit."
By providing caregivers with the tools to come up
with ethical options for patients and families to consider, Miller says
she's hopeful that such discussions become part of the healthcare
dialogue.
"Bioethics in a rural setting presents many
challenges due to limited economic resources, reduced health status, an
aging population, problematic access to care and caregiver stress,"
Miller says. "There are no easy answers, but a team approach that
emphasizes listening, deliberation and core ethical values in crafting a
plan of care that best meets the patients' needs goes a long way toward
improved health outcomes."
by Aimee Doloff
January - February, 2009
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