Fall 2003 - Hospice of the Rapidan

Hospice Month Activities—Where Do You Fit In
November has been designated as National Hospice Month for 25 years, with hospices across the country
making special efforts to educate their communities about hospice care—before it’s needed. Hospice of
the Rapidan arranged or participated in several events throughout the month.

Houck Has a Helping Hand
Following a “Meet the Candidates” breakfast at Aberdeen
Barn in Culpeper October 23 rd , Virginia State Senator
Edd Houck signed a proclamation acknowledging
November as National Hospice Month and encouraging
citizens of Senate District 17 “to increase their awareness
of the importance and availability of hospice services.”
(That would be Edd on the left, handing over the signed
proclamation to our fearless leader, Kathy Clements.)
Dinner and a Show
Hospice of the Rapidan was involved in the formation of the Central Virginia Palliative Care Initiative
(CVPCI), a coalition formed to educate the public about end-of-life issues in conjunction with the PBS
series “On Our Own Terms: Moyers on Dying” in 2000. The CVCPI organizes one to three community
education events each year, including the day-long workshops encompassed in the Compassion Sabbath
programs.
With a $5,000 grant from Rallying Points (a Last Acts initiative), funds from the Compassion Sabbath
workshops in March, and sponsorship from Hospice of the Rapidan, the CVCPI was able to arrange for a
professional performance of Waltzing the Reaper November 6 th , starting with dinner and ending with
dessert and discussion—all at no cost to the participants. Space was available for 140 people, and by
November 1 st there was a waiting list! Obviously, the recent publicity of cases such as Terri Shiavo’s
have made people more aware of the wisdom of having advance medical directives.

Waltzing the Reaper is a one-woman show, written by P. Paullette MacDougal and performed by Judith
Gantly, abbreviated as “A once-vital, still witty woman, Vera has been resuscitated despite her Living
Will. Now she must depend on a relative she never liked to get her out of the hospital and home, where
she can make peace with her family and die with dignity, with the help of Hospice.” The synopsis does not
express the humor or emotion of the play, nor does it explain its thought-provoking aspects that leave
everyone in the audience wondering what they would do in a similar situation—from either perspective,
either as the dying person or the family with whom she cannot communicate.
Poetry from the Heart
CVPCI (and Hospice of the Rapidan) also participated in the sponsorship of speaker Donald Hall for a
Medical Hour forum at the University of Virginia Medical Center on November 12. Hall read from his poetry
about the last illness and death of his wife, poet Jane Kenyon, in 1996, as well as about his own
bereavement following her death. Discussion followed his presentation of poems published in two books,
Without and The Painted Bed.
Library Lessons
As we’ve done for the past several years, Hospice of the Rapidan provided National Hospice Month posters
to libraries in the five-county area for displays during the month. The displayed collection of books on endof-life
care and hospice in a central location in each library makes it easier for people to find information
on a subject they might be a little hesitant to explore.
Hittin’ the Road
While our Speakers' Bureau operates year-round, several members of the staff were able to speak to
groups in November about hospice care, including a joint venture with Hospice Support of Fredericksburg
on advance directives at Lake of the Woods Church on November 18 th . Staff and volunteers also provided
information to the Culpeper community at the annual Culpeper HealthFest.

As a devoted reader of Companion, we realize you have already learned quite a bit about hospice care in
general and Hospice of the Rapidan in particular. We hope you’ll add your expertise to community
education during National Hospice Month by sharing information on hospice with people you know, so that
everyone has the opportunity to live life to the fullest.
Twinkle Time
Our annual Tree of Lights celebration takes place Wednesday, December 3 rd at 5:00 pm in Yowell Meadow
Park in Culpeper.
Thanks to a designer skirt of chicken wire, our commemorative tree has survived the busy park beavers
for another year! Found and Sons installed the ground marker earlier this year, and Ruth Pavlik is
organizing her volunteers for another twinkling event. Hopefully, it will be at least 10 degrees warmer
than last year … and not drizzling like the year before … Mother Nature hasn’t exactly been smiling on
Hospice of the Rapidan events lately, it seems (except for our recent Service of Remembrance, which was
a beautiful fall day).
Yowell Meadow Park is at the intersection of Blue Ridge Avenue and Route 522 (Sperryville Pike), and our
tree is near the pond. Plan to join us for carols, cookies, and of course, candlepower!
By the way … you can sponsor one or more of those lights by using the enclosed envelope: designate
lights in honor or memory of someone for $10 per light, or 3 for $25. These donations make it possible for
us to care for everyone, regardless of reimbursement options. Call 540-825-4840 between 8:30 and 4:30
Monday through Friday to order your lights; we even take Visa and MasterCard!
Hospice Myths and Facts

As mentioned on the first page, a main goal of National Hospice Month is to educate people about end-oflife
issues and hospice care. The first American hospice opened in 1974, and by 2002, 3,200 hospices
across the country cared for 885,000 terminally ill people and their families. But only 25% of the 2.4
million people who die each year do so at home—the rest die in hospitals, often tethered to machines and
enduring painful procedures, so hospice care awareness must increase. Despite growing numbers of
people who use hospice or have at least heard about it, several myths about hospice care remain, which
can be dispelled during National Hospice Month!
Timing is Everything
A common assumption is that a person should be bedridden and in the last few days of life to start
hospice care; or, that a person has to die within six months of entering hospice care. However, Medicare
guidelines specify that a person is eligible for hospice care once a prognosis of six months has been given.
Since a terminal illness does not always have a predictable course, hospice benefits may be extended
beyond the initial six-month certification if the patient continues to meet Medicare guidelines for hospice
qualification Moreover, the person does not have to be homebound, and can still enjoy quality of life in his
or her last months while under hospice care. That’s why we keep saying “it’s about living well until you
die.”
The Doctor is In
Accepting hospice care does not mean that all medical help immediately ceases. Hospice provides relief
from pain when curative efforts are no longer appropriate, and medical procedures such as chemotherapy
and radiation may still be used for comfort purposes. The patient’s own physician
remains in charge, working with the hospice team of nurse, home health aide, social worker, chaplain, and
volunteers to implement a plan of care.
Who’s It For

Hospice is sometimes assumed to be only for old people, people with cancer, or people with AIDS. While a
hospice may have been created to serve a particular group, a Medicare-certified hospice such as Hospice
of the Rapidan cares for anyone with an end-stage illness and a six-month prognosis, regardless of age or
diagnosis (we’ve had all ages, from babies to centenarians).
Who Pays
People also express concerns about the costs of hospice care. Yet most patients qualify for the Medicare
Hospice Benefit, which has been available since 1982. Medicaid, most HMOs, and most private insurance
plans in Virginia also cover hospice care. In Culpeper, Fauquier, Madison, Orange, and Rappahannock,
Hospice of the Rapidan’s Benevolent Care Fund assists patients who do not have access to any of these
sources of reimbursement.
TLC: Tender Loving Care—and Compassion
No specific story this time, just some quotes about our stupendous staff:
From a Bereavement Support Group participant:
“The facilitators were very knowledgeable and informative. We could not have asked for more
supportive leaders.”
From a Physician Satisfaction Survey:
“Every staff member I spoke with was courteous, friendly and ready to help—even if they
weren’t directly involved with the patient.”

From a patient’s family member:
“I don’t know what we would have done without Hospice. You made [her] last days mean so
much as she said good-bye to her friends and family.”
Survey Sez
In February of last year, the
National Hospice and Palliative Care Organization (NHPCO) released the results of a survey designed to
see how Americans feel and what they know about hospice and palliative care. Here are some of the
highlights:
Nine out of ten wanted a palliative care consult (in other words, they’d like the option to discuss comfort
measures when curative treatments show little or no promise of success)
Most (86% of those surveyed) believed that people with a terminal illness would like to receive end-oflife
care at home (yet 75% still die in hospitals each year)
Three out of five (63%) considered hospices most knowledgeable about end-of-life care, with physicians
a surprisingly distant second at 17%
A majority (42%, or 2 out of 5) thought insurance pays for specialized end-of-life care, with only 15%
aware that Medicare (through the Hospice Medicare Benefit) does so; more people (17%) thought it
would be out-of-pocket expenses—so we’ve obviously got a long way to go in educating the country
about hospice care!
The survey asked participants to give their opinions on what they think other Americans want; it did not
ask if participants had any prior experience with hospice or other end-of-life care (or lack of it)—so when

half of the participants said they believe the current health care system adequately explains end-of-life
care options, it’s unclear as to whether they are just assuming that health care practitioners must be
doing so because it’s a health-related issue, or if they’ve had experience that proves it.
The full survey report findings are available on the NHPCO web site, www.nhpco.org. Other surveys are
also available on the site, including the
patient satisfaction survey which Hospice of the Rapidan participates in and reports on each year. Hospice
of the Rapidan is a member of the NHPCO.
Autumn Notes
Each year, we honor the memory of the people we cared for during the previous year with a Service of
Remembrance. Hospice of the Rapidan staff and volunteers join with family members and friends to
commemorate the lives of Hospice patients and others whose names are submitted by participants in our
bereavement support groups. This year, over a hundred people gathered at St. Stephen's Episcopal
Church in Culpeper on a perfect autumn day for the event, organized by Bereavement Care Coordinator
Craig Wilt and Volunteer Coordinator Ruth Pavlik.
We would be remiss if we didn't thank the people who helped with this event: the volunteers who set up
and/or cleaned up, including the inexhaustible members of the Knights of Columbus, John C. Cempré
Council Ladies Auxiliary, who provided baked goods for the reception; Dawn Bartlett, who donated her
time and talent to provide music on her harp; staff members and Rev. Michael Gray, who participated in
the service; Mason Hutcheson, who once again donated pots of chrysanthemums from his nursery,
Ebenezer Heights, delivered by volunteer Candy Tredway; and Ann Frazier, who bird-sat Friday night
for the doves loaned by Collis Jenkins. The dove release went off with only a slight hitch—the pair flew
up to the top of the church and just sat there enjoying the view (although Ann reports that this first flight
of young birds was a success—they did make it home!). Hospice staff, volunteers, and families all enjoyed
the opportunity to catch up during the reception following the service.

Note: A free workshop entitled "Coping With Grief: Facing the Holiday Season When You've Lost Someone
You Love" will be held in the Hospice Community Room Tuesday, December 2, from 7:00 – 8:30 pm. This
workshop is designed to help with the particular stresses that can arise during special occasions such as
the holiday season. Anyone in the area who has lost a family member or friend, hospice patient or not, is
invited to attend. Call 540-825-4840 to register.
The wind is calm
The air smells sweet
And the flowers are still as a rock
The water is flowing very slow
The leaves are turning colors
That’s what I like about fall
by 8-year old Noel Baker, grand-daughter of our Medical Records Supervisor, Janice Chick
Advance Directives—They’re Meant for Everyone!
Previous issues of Companion have discussed advance directives, but we’re willing to risk redundancy to
get the point across.
If you've read a newspaper or seen a national news report in the last several months, you've heard about
the "Florida case"—a young woman on life support whose family has resorted to legal battles in trying to
decide whether or not to discontinue her life support after many years. There are many factors to this

particular situation and many opinions on what constitutes life, but the most important thing is: if Terri
Shiavo had created an advance medical directive, discussed it with her family, and kept it in a readily
accessible place, this would be one less story for the media to sensationalize.
Florida’s is not the only case in which a young person's family is suddenly faced with making decisions
about his or her life, it is just visible at this time. A teacher of bioethics at the University of Pennsylvania,
Glenn McGee notes that “almost no one between the ages of 18 and 30 has completed written advance
directives for healthcare. But…80% of patients who are now in a persistent vegetative state are in this
same age group.” There goes the idea that only old or terminally ill people need advance directives!
Most people in America shy away from discussions of death as if denying its existence will preclude its
arrival. Yet they'll spend years studying for a
career, months planning a wedding, weeks decorating a room in anticipation of a new baby's arrival, and
days organizing a vacation—all of them important events in a life, but arguably no less important than
one's final event. As the dying character in Waltzing the Reaper remarks about the perceived morbidity of
planning her funeral service the way she wants it to be, "how effective a funeral can I plan after I'm
dead" According to a national survey, fewer than 25% of Americans have completed advance directives,
about 20% haven’t even thought about end-of-life issues, and slightly fewer say they’ve thought about it
but haven’t discussed it with anyone.
The Basics
Obviously, the first place to start with your own advance directive is to talk it over with your family. They
need to know what your wishes would be in case you are ever unable to communicate. In addition to
giving someone power of attorney for your financial concerns, you should also give someone medical
power of attorney—and it may not even be the same person—who will understand and be willing to follow
your decisions. Once you've signed your advance directive, make sure it's accessible! Don't lock it up in a
safety-deposit box, or bury it amongst ten years' of tax returns—make sure the person you've selected as
your medical proxy knows where to find it. Send copies to family members and your doctor, and have it

put on file at local hospitals (most of which will now ask you if you have one whenever you enter for
elective surgery or other outpatient procedures, and encourage you at that point to fill one out). Shrink a
copy and stick it to the back of your health insurance card—the one item you can be sure hospital and
emergency personnel will go looking for.
Start Thinking
Invite the whole family to get together to discuss their end-of-life wishes. Use a high-profile case (even if
you don't know any of the details except that somebody's in a vegetative state and the family's in a
quandary as to what the person would have wanted) as a jumping-off point. Assure everyone that you
aren't trying to be depressing or macabre, or trying to sneak a peek at possible inheritances, and that the
whole conversation needn't be frightening. Propose a "what-if" situation that would result in a vegetative
state, and talk about what each of you would like to have happen; how long, or if at all, to be on lifesupport
systems, for example, if brain activity ceases. How do you feel about organ and tissue donation
Would you want visitors Music Your pet Would you want to be read to, sung to, have your hand held,
your feet rubbed
Dr. Joanne Lynn, director of the Washington Center for Palliative Care Studies, suggests these
stimulating questions: “If artificial feeding and hydration could get you over a tough spot until you could
resume eating, and it could be stopped at any point if it isn’t helping, would you want it And, to what
extent would you want health care providers to yield to the views of the family if they are contrary to the
directive” For example, what if you said on your advance directive that in a persistent vegetative state,
you would want no medications other than for pain. Sounds plain enough … but what if an antibiotic could
cure something relatively minor, such as a bladder infection, and would make you more comfortable Be
aware that health care providers are restricted in what actions they can take without authorization. Here's
where discussion—ahead of time—with your family will help, just so they'll have a better idea of what your
decision might be.
A Little Help from the Pros

Several tools are available to help make decisions, and can also guide you through areas you might not
think of on your own. A good one is the "Five Wishes" booklet available from www.agingwithdignity.org …
or by calling your favorite hospice, right here in central Virginia. Another is "Let's Start Talking" from the
NHPCO; again, available from us, or by visiting
www.nhpco.org. Last Acts' “Conversations Before the Crisis" brochure has ways to start talking about
advance directives; just released in June, it proved so popular that it's temporarily out of print, but you
can visit their web site at www.lastacts.org to get on a waiting list (no use calling us for this one, we're on
the backorder list, too!).
Now, Write it Down!
Advance directive forms are available at hospitals, hospices, and doctors' offices. "Five Wishes" includes a
form that is accepted in most states in the U.S. Two of the hospitals we work with, Martha Jefferson
Hospital and the University of Virginia Medical Center, have published advance directives forms that
include several pages of suggestions and explanations. You don't need an attorney or a notary to complete
an advance directive, just two witnesses to sign it.
Remember, you can modify or rescind your advance directives easily as your opinions and situations
change. The most important thing is that your family has a fairly good idea of what you really want …
because if you don't decide when you can decide, a stranger in a courtroom will make the decision for
you.
Let’s Get Wiser, Not Just Older
The following statistics from the National Hospice and Palliative Care Organization (NHPCO) on aging and
current levels of hospice care usage demonstrate the need for a whole month of hospice education.

Today, there are more than 40 million Americans over the age of 65; in the next thirty years that
number is expected to double.
People over the age of 85 are the fastest growing segment of our population.
It is estimated that there are more than 72,000 people who have reached 100 years of age. In the next
fifty years that number is expected to reach 834,000.
It is estimated that fewer than 25% of all Americans have completed advance directives that tell their
family and physician what their wishes would be should they face a terminal illness.
While the number of Americans receiving hospice and palliative care grows each year, NHPCO estimates
that for every patient who receives hospice, another patient could benefit from the comprehensive
services hospice provides but does not receive this special care.
Lack of awareness of hospice means that too many Americans still die alone or in pain. Too many
patients are being referred to hospice care too late, or not at all. And too many families are left without
bereavement support.
Anniversary Schmaltz
Well, this space should have been filled with a large article, pictures, and descriptions of our 20 th
Anniversary Celebration September 20 th … however, a breezy little visitor to Virginia earlier that week
forced a change of plans. We rescheduled all of the events for November 15 th (smack in the middle of
National Hospice Month!) and felt it would be inappropriate to hold the fall newsletter back until after that
date. So watch for that exciting article in the spring issue of Companion!
Rather than wait even longer to acknowledge some special efforts, we’d like to thank some of the people
and companies that helped us plan our Anniversary Celebration. Hospice of the Rapidan volunteer John

Hagerty worked tirelessly until he found Rappahannock Cellars willing to work with us on providing
wine for our guests. Mike Nelms took time away from his busy car dealership to meet with us to get
ideas on what he might speak about, and charmed and moved us with his story of his own hospice
experience. Pat’s Floral Designs in Madison had already created lovely table arrangements before we
got the word on Friday afternoon that the country club was inaccessible and powerless, and Pat was able
to give a few of those arrangements to others over the weekend.
Our raffle prize packages were made possible by generous donors as well. Nancy Garrett, Ann
Mattingly, and Claire St. Jacques had once again donated great seats for Redskins games for us to
raffle. Due to the delay, the two winners will only have three games left to choose from: New Orleans
Saints, November 30; Dallas Cowboys, December 14; and Philadelphia Eagles, December 27.
Mary Ann Kuhn, one of our Board members and the owner of the Middleton Inn Bed & Breakfast in
Washington, donated a night’s stay at that historic bed-and-breakfast. This prize was combined with a
generous gift certificate for dinner for two at nearby Blue Rock Inn.
We had over 20 artists provide us with a wide variety of artwork for the Art Show and Sale. Charlie
Robson rounded up boy scouts to help hang the aforementioned artwork; however, when we moved the
date, it was to a date for which his scouts already had camping plans. So Sunithi Gnanadoss
volunteered her husband, coordinator of student activities at Woodberry Forest School, to round up some
willing helpers.
And of course, the planning and implementation would not have been possible without our sponsors!
Gold Sponsors ($1,000) – Solutions Recruiting and Capital Assets Financial
Silver Sponsors ($500) – Jefferson Homebuilders, Mason Insurance, Anonymous, and Hilary Parker
Bronze Sponsors ($250) – Jim Nelson/Scott & Stringfellow, Rappahannock Electric Cooperative, Butch
Davies & Marty Moon, Kathy and Paul Clements
Other – Maloney and Ward Insurance, Anonymous

Whether or not the weather cooperates with any of our scheduled events, we are pleased and proud to
have served the community for 20 years … and plan on doing so for many years to come!
Holiday Hangers
Our nifty new holiday ornaments are available at a store near you through December 15 th ! (Or, you can
just call our office and order them over the phone, which you can do any weekday between 8:30 and
4:30, even after December 15 th .)
Culpeper County: Cameleer, Ribbon Hallmark, and Culpeper Pharmacy
Fauquier County: Town Duck, G. Whillikers Toys & Gifts, and Pennyante
Madison County: Pat’s Floral Designs
Orange County: Gordonsville Pharmacy and Grymes Pharmacy
Rappahannock County: Horse & Hound
The ornaments are $8 each; since we’re a 501(c)3 organization, $5 of that is tax-deductible for you (for
those of you unfamiliar with the complexity of federal regulations, the whole amount isn’t deductible as it
is with an outright donation of money because you’re actually receiving something tangible, so you have
to deduct the item cost). They’re brass ovals with white and teal enamel artwork, and come complete with
a loop for hanging. We may have added a few locations by the time you receive this newsletter, so check
out our web site at www.hotr.org for updates!
Pennies Earned

Link Bar 0
Thanks to everyone who dropped off reusable items—or purchased some—for the White Elephant’s
WExchange program between July and September! This community charity support program has benefited
Hospice of the Rapidan with thousands of dollars over the last four years. Hospice of the Rapidan received
$1,498.92 as one of the funding recipients in the third quarter of this year’s program.
We salute Cynthia Parke Broockman and all the others at the White Elephant for their commitment to
the community!
Webfootnotes
Aging With Dignity—www.agingwithdignity.org—”Five Wishes” booklet for planning advance directives
Last Acts—www.lastacts.org—“A Guide to Telling Your Life Story”
Midwest Bioethics Center—www.midbio.org—”Caring Conversations” workbook for advance directives
National Hospice and Palliative Care Organization—www.nhpco.org—lots of information on end-of-life
care