Hospice
Isn’t About Giving Up
Written
By: Geriatric Planning
Specialist
Amy
G. Bailey
,
RN, MSW
Many
times when people hear the word “hospice,” they shiver and change the
subject. Hospice is scary,
hospice means it’s “all over”, that death is near.
It’s easier not to talk about it, and pretend it doesn’t exist.
But consider that death is just as important as birth.
We
talk about a birth, plan for it, discuss the process, wonder about the
outcome. By talking about it,
by facing it, we integrate it into our lives.
We show respect for a birth, and make a welcome place for the
beginnings of life. What if
we gave the same time, discussion and respect to the end of life?
Perhaps we would be less fearful.
All
our lives we talk about things we mean to do, and things that are
important to us. Somehow, we
don’t get around to them. We
don’t take that trip to the
Rockies
, we don’t visit Aunt Sue one more
time, we don’t heal the anger between brothers.
And then we are out of time, and there are regrets.
Regrets are bitter.
Sometimes,
we have a warning that our time is limited- that is often the case in the
diagnosis of terminal illness. What
a terribly frightening thing to hear!
The response of fear is not so much a fear of death itself, as a
fear of how you will die, perhaps in pain, or alone, or without the
forgiveness of an estranged friend, without having your affairs in order.
Second,
there may be decisions to make about future treatments - will you try for
a remission or cure, or is it time to consider comfort and symptom
management.
Then,
to make things worse, people start to treat you differently.
They avoid eye contact. They
don’t stay long when they visit, or they don’t visit at all.
That adds to the loneliness and sense of isolation.
Many people would like to be of support, but do not know how.
They may be feeling vulnerable and frightened themselves.
That leaves you, and your loved ones feeling even more alone.
There
is help. Consider Hospice,
not when death is imminent, but when you learn that you or a loved one has
a life limiting illness of any kind.
The services of Hospice are not JUST for the last few days of life,
they are for the entire end-of-life process.
Hospice
can answer questions about your illness, and help you understand what to
expect. They can help you
understand the things you need to consider as you make decisions about
treatment options. It
is not necessary to wait until your doctor calls Hospice - you can call
Hospice. They will contact
and work with your doctor, to provide the care that you need.
Hospice
is expert at pain and symptom management. “With appropriate symptom
management, it is frequently possible to do more, to enjoy daily
activities.” To someone who
can take that trip they have put off for years, or go to a grandchild’s
christening, or attend a family picnic, “quality of life” is more than
a phrase. “And that’s the kind of thing we want to do for people.”
(Barb Watts-Huebert, MSSA Susquehanna Home Care/Hospice.)
Hospice
can help you face the frightening issues.
The nurses, social workers, pastoral care counselors, aides, and
volunteers have all had special training to make it easier for you to talk
about end of life issues, to face and complete unfinished business.
Many hospice patients report that they are more comfortable with
their lives, better able to enjoy friends, family, and activities.
“Hospice is not what people think it is, it’s not scary at all.
It’s help, because I couldn’t keep mom at home without their
help. Instead of sitting
around a bed at a nursing home, we can have family visits and birthdays at
home.” (Debra K. Smith,
daughter of a Hospice patient)
Hospice
also provides support to family and friends.
Sometimes a patient has come to acceptance and the family has not.
This can create tension and misunderstanding at a time when mutual
support is needed. Hospice
can assist family members come to terms with the patient’s choices, and
provide support after the death.
Dame
Cecily Saunders, founder of the Hospice movement, recognized that dying is
hard. It is difficult to
leave loved ones, cherished places, and vital interests.
It is also a mistake to romanticize the dying process and hope that
by admission to Hospice, everything will be wonderful and there will be no
grief. But it is possible for
you to accept that death is as inevitable as birth and that it is a
natural part of life. That
acceptance puts aside fear and anger, allows healthy, open grieving, and
gives you and your loved ones the freedom to enjoy each other, to grieve
and grow together, and to find peace.
If
you or your loved one is facing a life threatening illness, please call
your local Hospice. Hospice
is not about giving up; it’s about going on.
For
more information, please see http://www.nhpco.org
and http://www.hospicenet.org,or
your local Hospice.
Thanks to Barb
Watts-Huebert, MSSA, Social Worker at Susquehanna Homecare and Hospice,
and to Debra K. Smith, daughter of a Hospice patient, for their
contributions to this article. Other
resources include The American Journal of Nursing, Nursing,
and RN.
Study
Shows Failure of Living Will as Planning Tool
Written
By:
Jeffrey
A. Marshall
,
CELA*
An
“advance directive” is a set of instructions that says how you want
medical decisions to be made if you ever lose the ability to make those
decisions for yourself. The
most popular form of advance directive is the “living will.”
Unfortunately, both consumers and health care providers often fail to
appreciate the significant limitations of living wills.
Living
Wills and Health Care Powers of Attorney
A living will
describes the kinds of treatment that an individual wants to receive if
the individual is terminally ill or permanently unconscious AND not
competent to make medical decisions.
A living will is not
relevant unless the patient is either terminally ill or permanently
unconscious.
The
professional staff at Marshall and Associates has long recommended that
our clients have health care powers of attorney in addition to, or in lieu
of, living wills so that decision making is authorized for the broad
spectrum of health related issues that are likely to arise if the client
becomes incapacitated. By using a health care power of attorney, the
client can authorize a trusted family member or friend to make health care
decisions if client is ever unable to do so. Instructions regarding the
client’s philosophy as to end-of-life care and other situations that may
arise can be included in the document. The agent can act regardless of
whether the principal is terminally ill or permanently unconscious.
The health care
power of attorney is valid whenever the client is not competent to give
informed consent. It creates an advocate for the client who can evaluate
the facts and apply the client’s philosophy to whatever situation has
arisen. It allows for
substituted but truly “informed” consent to treatment. The health care
power of attorney should be the advance directive planning tool of choice
for most people.
Study
Highlights Inadequacy of Living Wills
Recently,
a study by researchers at the
University
of
Michigan
highlights another reason why people
need health care powers of attorney: living
wills don’t work. In
an article to be published in the next issue of The Hastings Center
Report, a bioethics journal, an internal medicine researcher and a
professor of law and internal medicine find that living wills are
inadequate. The researchers base their conclusions on their review of
hundreds of studies of living wills, end-of-life decisions, and the
psychology of making choices.
"Our
review shows that the evidence about living wills demonstrates that they
fail all five tests that would have to be passed for them to work,"
says study co-author Angela Fagerlin, Ph.D. "First, most people don't
even have living wills. Second, those who do rarely know what care they
would truly want in some hypothetical future. Third, it's surprisingly
hard for people to state their wishes accurately and understandably.
Fourth, the document is often unavailable when decisions need to be made.
Fifth, even when it is available, surrogate decision makers usually cannot
reliably apply its instructions to the patient's current health
condition."
As
advances occur in modern medicine and peoples’ situations change, their
preferences about medical treatment change as well.
Living wills do not allow the flexibility to deal with those
changes. Living wills require
that you make black and white decisions in a world that is usually not so
simple.
People
are not Clairvoyant
Co-author
Carl Schneider, a University of Michigan Law School and
Medical
School
professor comments, "Living
wills don't fail for lack of effort, education, intelligence, or good
will. They fail because of basic traits of human psychology." People
have great trouble predicting their own preferences about even simple,
everyday things, like what snacks they will want or what groceries they
will buy next week. "If they have trouble predicting what is
familiar," asks Schneider, "why should we expect them to succeed
when they are predicting what they will want in circumstances they have
never experienced and can't foretell?"
The
researchers suggest that people will have a better chance to avoid
undesired medical treatment if they use a health care power of attorney to
appoint someone to make decisions for them if they are unable to make
their own. Powers of attorney
“only require a few simple choices, and they don't differ significantly
from the existing system of allowing family members to make medical
decisions about incompetent patients," says Schneider. "They
also allow the decision-maker to use the information about the patient's
condition that's available at the time a decision is needed, rather than
asking the patient to guess about something far in the future."
Researchers
Recommend Health Care Powers of Attorney
The
University
of
Michigan
researchers suggest that the health
care power of attorney is the tool most people should use to help ensure
that their wishes will be carried out. The
power of attorney allows people to make simple decisions based on things
and people that they know, without having to guess about the future.
Unlike living wills, powers of attorney may provide a process for making
any health care decision that arises, not just those that involve terminal
illness. Health care powers
of attorney are effective. Living
wills are not.
Helpful
links:
The
Hastings Center Report website: http://www.thehastingscenter.org/.
University
of
Michigan
's full press release on the
study’s findings: http://www.med.umich.edu/opm/newspage/2004/livingwills.htm.
More
information about Advance Directives from The Elder Law Firm of Marshall
& Associates:
http://www.paelderlaw.com/factsheet.html.
http://www.paelderlaw.com/legaltools.html.
Does
Your Club Or Organization Need A Speaker?
If
you are interested in having an attorney or geriatric planning specialist
from
The
Elder Law Firm of Marshall & Associates speak to your group, or at an
upcoming event, please contact
our
Public
Ed
ucation
Coordinator, Melissa Bottorf
at
mbottorf@paelderlaw.com
or 1-800-401-4552
Elder
Law Attorneys: Zealous Advocates
The
following article was reprinted with permission from
Eye
on Elder Issues,
a newsletter provided as a public service by the
National
Academy
of
Elder Law Attorneys (NAELA).
Elder
law attorneys are zealous advocates for people of age and those with
disabilities.
When clients seek the advice of an elder law attorney, it is not usually
for just a single issue. Health care decisions, long term care financing
decisions, or end of life decisions often involve complicated legal,
medical, and social issues that affect the individual seeking assistance,
as well as their families. The legal concerns of this population can tear
at the heart as people grapple with major life-changing decisions.
Many
of our nation’s seniors are facing debilitating diseases, as they grow
older than the generations before them. Alzheimer’s, Parkinson’s
disease, Lupus, and even Fibromyalgia and Osteoporosis can be devastating
to those with limited financial means and family support. They wonder how
they will care for themselves, where they will live, how to avoid
outliving their money, and what rights they have under existing health
care insurance plans, Medicaid and Medicare programs.
Our
nation’s laws are fragmented and confusing, at best. Our federal benefit
programs (Social Security, Medicare, Medicaid, Veteran’s Benefits, etc.)
are under constant change and new financing products come on the market
daily. This vulnerable population often has no one to help them sort
through the issues in a logical and personal way and are often subject to
unscrupulous salespeople selling products that do not really meet their
needs.
There
are a myriad of housing options available: from assisted living to nursing
home care to group homes. There are several financial vehicles being
offered: home equity loans or reverse mortgages, credit cards or debit
cards, loans and viatical settlements; and a variety of insurance
programs: from health insurance to disability insurance to long-term care
insurance. There is also a range of family situations that must be taken
into account: providing for disabled children, frail spouses, or the
support of parents. The
reality is: it takes an elder law attorney to sort through the issues in
light of the individual’s personal situation and what may be confronting
him/her in the future.
One
of the newest products to come out in the last few years is long-term care
insurance. Many insurance agents have marketed this product as the best
way to finance long term care. As with any product, the evaluation needs
to be done with the individual’s circumstances in mind. This particular
product provides a perfect example of the value that the elder law
attorney brings to the client. If the client has a pre-existing condition,
this type of insurance is often not available or may be too
expensive to purchase. The
elder law attorney will explore long-term care insurance as an option and
then offer other viable alternatives that may fit the client’s situation
better. It is the elder law attorney’s legal and ethical
obligation to explore all possibilities available to the client. This may
be applying for unused benefits, using untapped resources, or doing
Medicaid planning. The main focus is to allow the senior to live out their
lives comfortably with as much dignity as possible and the peace of mind
that their loved ones will not be burdened by their circumstances.
Elder
law attorneys are working with our nation’s seniors on a daily basis.
They are in a position to see the deficiencies of our federal benefit
programs, to identify products that fit specific needs and to work with
families to meet the needs of their loved ones. Our nation owes our elders
the opportunity to live and die with dignity. Elder
law attorneys bring concern, care, and compassion to vulnerable
individuals who are often in very delicate and complicated situations.
For more information about elder
law attorneys and the National Academy of Elder Law Attorneys, visit http://www.naela.org/.
Established in 1987, NAELA provides a resource of information, education,
networking and assistance to those who deal with the many specialized
issues involved with legal services to the elderly and people with special
needs.
“Paying
for Long-Term Care: What Families Need to Know” Workshop Set for
Wilkes-Barre
Getting
good information about options for long term care is critically important
for seniors. Four out of every ten people reaching age 65 will spend some
time in a nursing home and many more will require home care and assistance
with daily living.
The
Elder Law Firm of Marshall & Associates is known throughout
Pennsylvania
for the expert help we provide
seniors who are faced with long term care needs. We help families
struggling to care for their loved one at home find the programs and
financial help they need. Our
help can mean the difference between staying at home and moving to a
nursing home.
If
nursing home placement becomes necessary, we work with the facility to
help make the transition go as smoothly as possible. We make certain that
the nursing facility gets paid in a timely manner while helping the family
qualify for government programs that help pay the costs.
Marshall
& Associates occasionally holds free workshops to help educate
families and their advisors about the options that are available to pay
for long term care in the home or a nursing home.
Join us for one of these free presentations and learn what you need
to know about how to get the help you need and protect your family's
financial security when your spouse or parent is faced with a long term
illness.
Each
presentation is FREE and open to seniors, their families, elder care
professionals, and anyone else who needs to learn more about this complex
subject. Each presentation
lasts about 1 ½ hours, including a “Question & Answer” Session.
-
Thursday,
June 10th, 2004
at
6:30
PM
Woodlands
Inn and Resort
1073
Highway 315,
Wilkes-Barre
Reservations
are suggested, but not required. SIGN
UP ONLINE
or call 1-800-401-4552 for more information or to reserve your spot for
this free workshop. Or just
stop by!
Back
issues of The
Elder Care Law Alerts
are available on our website.
You
can even search our site by a keyword
or phrase!
Do
you have a friend or colleague who would enjoy reading the
Elder Care Law Alert? If
so, please feel free to forward it to them. Simply use the “Forward”
button on your e-mail program.
To
subscribe or unsubscribe to the Elder Care Law Alert,
send
your request to:
webmail@paelderlaw.com
*Attorney
Marshall
is
certified as an Elder Law Attorney by the National Elder Law Foundation
under authorization from the Pennsylvania Supreme Court
© 2000-2005
Marshall & Associates www.paelderlaw.com
