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Choices for Care
Hospice Care
Home Care
Insurance Issues
Making Treatment Decisions
Patients' Rights
The Patient Self-Determination Act
Advance Directives: The Living Will and Durable Power of Attorney for Health Care
Planning for Your Family
When dealing with advanced cancer, people may have different personal goals for
their care. Some people choose to investigate every medical care option
available. Others prefer to focus on the quality of their life, perhaps with
treatment to relieve or reduce symptoms, called "palliative care," but without
aggressive treatment of their cancer. Still others may choose not to have any
further treatment. Such decisions are deeply personal. If you need to make this
type of decision, you may want to carefully review all available options. Your
feelings and beliefs (and perhaps those of your family or others close to you)
are important to consider. To a great extent, personal goals help determine the
level of medical care that is appropriate for you, and the setting in which
that care will be provided.
There are different types of services available to patients with advanced
cancer. In today's changing health care environment, many patients receive
their care at home or in a facility such as a clinic or nursing home, rather
than in a hospital. Even when hospital care is an option, patients are often
able to obtain care at home as a practical and comfortable alternative to
hospital care. When you are considering various options, it's helpful to keep
in mind that different types of health care service have different goals.
Hospice care and home care are two examples.
Hospice care is designed to give supportive care to people in the final phase
of a terminal illness and focuses on comfort and a person's quality of life,
rather than cure. It is intended for patients who no longer desire or can no
longer benefit from treatment aimed at curing their cancer. The goal of hospice
is to enable patients to be comfortable and free of pain, so that they live
each day as fully as possible. Aggressive methods of pain control may be used.
Hospice programs generally are home-based, but they sometimes provide services
away from home--in freestanding facilities, in nursing homes, or within
hospitals. The philosophy of hospice is to provide support for the patient's
emotional, social, and spiritual needs as well as medical symptoms as part of
treating the whole person. Hospice caregivers address the needs of the patient
and also consider the concerns of those close to the patient.
Hospice programs use a multidisciplinary team approach, including the services
of a nurse, doctor, social worker and clergy in providing care. Additional
services provided include drugs to control pain and manage other symptoms;
physical, occupational, and speech therapy; medical supplies and equipment;
medical social services; dietary and other counseling; continuous home care at
times of crisis; and bereavement services. Although hospice care does not aim
for cure of the terminal illness, it does treat potentially curable conditions
such as pneumonia and bladder infections, with brief hospital stays if
necessary. Hospice programs also offer respite care workers, people who are
usually trained volunteers, who take over the patient's care so that the family
or other primary caregivers can leave the house for a few hours. Volunteer care
is part of hospice philosophy.
The first hospice program in the United States began serving patients in 1974;
today more than 3,000 hospice programs across the country offer comprehensive
hospice care. Most insurance plans include hospice as a covered benefit. The
National Hospice Organization promotes and monitors the quality of hospice
care. For information about hospice concepts, practices, and referral, call the
National Hospice Organization at 1-800-658-8898. Your doctor, nurse, or social
worker also can provide information on hospice care.
Unlike hospice programs, home care services may include treatment that targets
the cancer itself, not just the symptoms of the cancer. Some people prefer to
have cancer treatments and care in the familiar setting of a home rather than a
hospital. Home care is provided through various for-profit and nonprofit
private agencies, public and private hospitals, and public health departments.
Members of the health care team visit the patient at home. Home health care
professionals can provide cancer treatment, pain medications, nutritional
supplements, physical therapy, and many complex nursing and medical care
procedures. Like hospice care, home care also can manage pain and relieve or
reduce other symptoms.
Home care can be both rewarding and demanding for the patient and caregivers.
It often changes relationships and requires addressing new issues and coping
with unfamiliar details of the patient's care. To help prepare for these
changes, patients and caregivers are encouraged to ask questions and get as
much information as possible from the home care team.
Depending on your own needs and concerns and those of your family or others
close to you, the home care team may include many or all or of the following
professionals: nurses or nurse practitioners, social workers, dietitians,
physical therapists, pharmacists, oncologists, radiation therapists, and
psychologists or psychiatrists. (Some health team members do not make home
visits). In addition, many patients find that they need a home health aide to
help with bathing, personal care, or preparation of meals. Your primary care
physician will remain in close contact with the team and monitor your care
through other team members, phone calls, and office visits.
Most insurance plans cover brief home visits from a nurse and some cover having
a home health aide several times a week. Although more frequent visits and
other home care services are available, such as 24-hour care or respite care
performed by trained volunteers, these services often are not covered by
insurance. As always, you need to know exactly what your insurance plan does
and does not cover. If you have questions about your insurance coverage, speak
to a member of your health care team.
| SOME BENIFITS OF HOSPICE AND HOME CARE
Hospice caregivers and home care professionals can help you understand and work
through some of the difficult emotional issues that you and your family or
others close to you may be experiencing. In this situation, the social worker
is an important team member who provides emotional support, assists in planning
hospice or home care, and eases the transition between types of care. From the
patient's point of view, an advantage to home-based medical services is that
family members and friends can be with you and help with your care.
As one woman who cared for her mother at home said: "The times we all
were together with Mom, the rest of the family usually sat and talked with her,
while I attended to her personal care or coaxed her to eat. [During those
times], we quietly seemed to draw strength from each other just by being
together."
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When you are considering different health care services, be sure to check your
insurance plan. Insurance coverage may differ depending on the type of care
available and its purpose (e.g., comfort versus aggressive treatment). When you
call for information about your plan's coverage, it's a good idea to ask for
written confirmation of any information you receive by phone. You also may wish
to discuss specific options, such as hospice care and home health care, with
your nurse, doctor, social worker, or clergy, as well as your insurance
company.
It is your right to make decisions about your treatment. It is also important
for you and those around you to realize that these decisions may change over
time. Family, friends, and caregivers may find it hard to accept, but for some
patients, trying to cure their cancer is no longer the goal. Quality of life
becomes more important. Other patients may want to try every available drug or
treatment in the hope that something will be effective. Either way, it is up to
you. Many patients turn to family members, friends, or caregivers for advice.
But the decision about how much or how little treatment for you to have is
yours. Sometimes a patient is unable to make this decision, due to severe
illness or change in mental condition. That is why it is important to make your
wishes known in advance.
Even though the decisions are yours to make, your family or those close to you
should not be left out. Families and loved ones are often the most important
source of support for patients at this time. Patients are encouraged to
establish a durable power of attorney and a living will so that their wishes
are known by family members and the health care team.
Refusal of treatment does not necessarily mean immediate decline and death;
however, a decision to refuse treatment should be based on your feelings about
life, death, and the benefits and side effects of treatment. If you decide to
stop treatment, you can still receive pain medication and treatments to reduce
the symptoms of your disease. This is called palliative care, and its primary
focus is helping you remain as comfortable as possible. Remember: You can
change your mind and ask to resume more aggressive treatment. If you do,
however, be aware that such a decision may raise insurance issues that you will
need to explore with your health care plan.
Your doctors will, almost certainly, offer information and advice to help you
decide whether or when to stop treatment. Many religious groups have issued
statements about the decision to end treatment. You may want to explore the
position that your religious group takes on this issue. Contact a member of the
clergy or other counselor if you would like more information. In the end, you
are the only one who can decide what is best for you.
You have other rights, too. You are entitled to complete information about your
illness and how it may impact on your life, and you have the right to share or
withhold that information from others. You also should be informed about any
procedures and treatments that are planned, the benefits and risks, and any
alternative treatments that may be available. You may be asked to sign an
"informed consent" form, which includes this information. Before you sign such
a form, read it carefully and ask your doctor any questions you might have.
A Federal law, the Patient Self-Determination Act (PSDA), requires all medical
care facilities receiving Medicare and Medicaid payments to inform patients of
their rights and choices in making decisions about the type and extent of their
medical care. The PSDA also requires medical care facilities to give patients
information about living wills and power of attorney, which are described
below. For more information about the PSDA, contact any hospital or medical
care facility in your area.
All states allow people to delegate some medical decision-making rights through
"advance directives," but state laws differ considerably. The two forms of
advance directives are a living will and a durable power of attorney for health
care.
A living will is a legal document, which has been properly witnessed by an
authority (notary), that allows you to state, in writing, that you do not wish
to be kept alive by artificial means or heroic measures. It is a recognized
statement of your right to refuse treatment and has been upheld in court. If
you decide to prepare a living will, be sure to talk with your doctor, nurse,
or lawyer to identify and define terms that may be important to your future
medical care, such as "artificial means," "heroic measures," and "code status."
You also may want to consider creating a durable power of attorney as a health
care proxy (that is, a person who will stand in your place to make medical
decisions). This legal document allows you to appoint someone who can make
decisions for you about your medical care if you can no longer do so. Choose a
person who knows how you feel about specific treatments and who is familiar
with any religious considerations that need to be taken into account. And make
sure that the term "durable" appears in the power of attorney document you
prepare. (A power of attorney can also delegate authority for financial and
property management.)
| How To Find Out About Your State's Laws
Each state has its own laws concerning living wills and durable powers of
attorney, and these laws can vary in important details. It is possible that a
living will or power of attorney signed in one state may not be recognized in
another. You need to be aware of this possibility if you move to another state
or enter a hospital in a state other than the one in which you live.
Call Choices in Dying, Inc., a non-profit educational organization, at
1-800-989-WILL to learn how to obtain a copy of the living will used in your
state and to learn more about a durable power of attorney for health care
(health care proxy). There is a small fee for obtaining the document. You also
can contact your state health department for this information.
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If you sign a living will or a durable power of attorney, tell everyone close to
you that you have these documents and give them copies. Your health care team
and lawyer, if you have one, also should be informed and given copies. This
information will help ensure that your wishes are carried out.
Careful planning reduces the financial, legal, and emotional difficulties your
family and friends face after your death. Though it is difficult, discussing
practical matters now, such as wills and debts, can eliminate many problems
later. Your early decisions also help relieve unspoken family worries. Advice
from professional advisers, including lawyers, clergy, social workers, and
insurance company representatives, can help you make these important decisions.
You may want to help your family plan a funeral or memorial service that has
your personal and special touch. Talk with your family and clergy about how you
would like to be honored and remembered. Your choice of music, readings, and
participants will speak your personal message to those gathered to remember
you.
You can help your family by organizing records, documents, and instructions
they will need. If you cannot gather all of these items, make a list of where
they are located. The papers should be kept in a fireproof box or with your
lawyer. If they are kept in your safety deposit box, be sure a family member or
friend has access to the box so that papers can be removed when needed.
Although the original documents must be used for any legal purposes, you may
want to make copies for family members. The forms at the end of this brochure
can serve as guides for collecting your records.
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