Is it a place?
Hospice care is a philosophy or approach to care rather than
a place. Care may be provided in a person’s home, nursing
home, hospital, or independent facility devoted to end-of-life
care.
What kind of treatment is
provided through hospice care?
Hospice care is holistic. Hospice treats the
whole person, not just the disease. It focuses on the needs
of both the patient and the family. The health care team attends
to practical needs such as insurance coverage, transportation,
and assistance with bathing in addition to emotional and spiritual
needs such as caregiver stress, grief, and fear of dying.
Care is provided by an interdisciplinary team including the
physician, psychologist, nurse, social worker, chaplain, pharmacist,
nursing assistant, volunteers, nutritionist, and physical,
occupational and speech therapists.
Is there a distinction between
hospice and palliative care?
Hospice care is a specialized form of palliative
care customarily provided during the last several months of
a person’s life. Persons with a life-limiting disease
may receive palliative care early on in the course of their
illness to relieve pain and other physical symptoms and to
assist them in coping with how the illness impacts their daily
living and family. The goals of both palliative care and hospice
care are the relief of suffering and improving quality of
life.
Is hospice the same as home
health nursing?
Two primary differences exist between hospice care and home
health nursing. First, any patient with a skilled medical
care need is qualified to receive home health nursing care.
The patient may be recuperating from heart surgery or require
intravenous medication for an infection from which they are
expected to recover. Hospice care, on the other hand, is limited
to persons with a terminal illness, usually with a life expectancy
of less than a year, and with a focus on palliation not cure.
Secondly, whereas persons in home health
care receive visits primarily from a nurse (additional services
such as physical or occupational therapy are sometimes ordered),
persons in hospice care receive the services of an entire
interdisciplinary team whose area of expertise is end-of-life
care.
A referral to hospice is
appropriate when the patient and family have opted for palliative
treatment for life-limiting or “terminal” illness.
Medicare guidelines further require that the physician has determined
that life expectancy (if the disease follows its normal course),
is six months or less
Does referral to hospice
mean that the physician is giving up on a patient?
Many physicians
struggle with feelings of having failed a patient when no
curative treatment remains. Reframing the goals of care from
cure to palliation often helps physicians accept a life-limiting
prognosis. Remember, there is much you can do even when curative
medical treatment is no longer appropriate. By referring a
patient to hospice care you are helping to relieve their physical,
emotional, and spiritual suffering.
Primary physicians often remain actively
involved in the care of patients after admission to hospice.
For many patients, the involvement of the primary physician
in hospice care provides reassurance that their doctors are
NOT giving up on them.
How can a physician talk
to a patient about hospice referral and not destroy their
optimism or hope?
If you believe there is much we can do even
if you are no longer offering curative medical options, patients
and families will feel some sense of hope. Physicians can
help a patient to identify their own goals for hospice care.
This will shift the focus of their hope: To not be in pain,
to die peacefully, to know their family will be ok, to be
a role model and teacher for their children, to make peace
with God or a Higher Power.
Patients and families may experience
some feelings of hopelessness when hospice care is offered
as the appropriate course of treatment. This is to be expected
and part of the normal process of grieving and acceptance.
They may also express anger. This, too, is normal.
It is important to understand the culture
of your patient and family. Do they prefer to talk about bad
news directly and openly or do they use euphemisms? Who is
the decision maker in the family? Should this news be communicated
to the patient or only the family or both?
It is also important to know something
about the religious framework of the patient and family. What
have they told you about the role of their faith in their
illness and healing? Do they look to their religious leaders
or practices for direction in making medical decisions? Do
they look to their spirituality for strength and hope?
Can a patient
receive medical treatment after referral to hospice?
Hospice care is medical treatment.
Patients will receive medications to relieve pain and other
physical symptoms. The primary physician in consultation with
the medical director of the hospice program will determine
which forms of medical treatment advance the palliative goals
of care identified by the patient and family. For example,
radiation therapy may be indicated as the appropriate means
for the palliation of pain, or antibiotics may be prescribed
to help keep a patient comfortable rather than to prolong
life.
If a physician refers their
patient to hospice, can the physician still remain involved
in the patient’s care?
The attending physician
may continue in a primary role (writing orders for medications,
consulting with the patient, family, and interdisciplinary
team on treatment decisions and goals, visiting the patient
directly at the hospital or home). The patient may also request
that the hospice medical director manage symptoms related
to the terminal diagnosis or assume complete responsibility
for the medical care of the patient.
What medical information
do patients and families need to have about hospice when the
referral is made?
It is important for the physician to be as
clear as possible with the patient and family about the disease
progression, treatment options, prognosis, and goals of medical
care that have led to a hospice referral at this time.
If a patient’s condition
improves unexpectedly, can he or she be discharged from hospice?
The primary physician and hospice team evaluate
the patient’s appropriateness for hospice care on a
regular basis. If a patient no longer meets criteria for hospice
care, they may be discharged and readmitted at a later date.
Will a patient’s health
plan pay for hospice care? How are finances handled in hospice
care?
A member of the hospice team will consult with
a representative of your patient’s health plan/insurance
to determine coverage. Most, but not all health plans cover
hospice care. Customarily, only treatments and medications
related to the terminal diagnosis and that are palliative
in nature will be covered: for example, if a person has end-stage
ovarian cancer but also suffers from a chronic heart condition,
medications for the latter illness may not be covered under
the hospice benefit.
Some plans offer a Per diem rate for
hospice care; others pay on a fee for service basis. There
may be a cap on how much the insurance will cover. Services
that are customarily covered include doctor’s fees,
medications, visits by the nurse and other core disciplines,
durable medical equipment including oxygen, and bereavement
care. Billing is done directly by the hospice program to the
insurance company or Medicare.
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A representative of the hospice will
meet with the patient and family to explain the hospice philosophy
and services. They will confirm medical eligibility, insurance
coverage, and patient and family choice for palliative/hospice
care. If hospice is determined to be the appropriate kind
of medical care, paperwork will be completed and services
begin usually within 24-48 hours of referral.
Who
are the members of the hospice team?
The hospice team functions as an interdisciplinary team with
a coordinated plan of care. The patient and family are integral
members of the interdisciplinary team. Regular team meetings
and frequent communications among clinical staff and with the
patient’s primary physician ensure that patient and family
needs and goals are met and constantly re-assessed.
Members of the hospice team
involved directly in interdisciplinary care to the patient and
family include the primary physician, hospice physician, nurse,
social worker, chaplain, bereavement coordinator, home health
aide, and volunteers. Additional team members may include occupational,
physical and/or speech therapists, psychologist, art and music
therapist, pharmacist, and nutritionist. (click
here for Hospice Team link.)
Who should the physician
interact with when making a referral?
Most hospice organizations have a referrals
or admissions department or coordinator. You may also contact
the hospice medical director to consult about whether or not
a patient is appropriate for hospice care.
How much patient care will
family members be expected to provide?
If a patient lives at home and is unable to do self-care,
usually a primary caregiver is required since hospice team
members cannot be in the home for extended periods of time.
The hospice program can assist the family in hiring private
nursing assistance to meet this need or in piecing together
care among family members, friends, and community resources.
After a patient dies, what
services or counseling is offered to family or loved ones?
Every hospice
program offers bereavement services to family and loved ones
for a minimum of 13 months following the death of a patient.
This may take the form of a visit, phone contact, short-term
counseling, assessment of need and referrals to community
resources, support groups, educational forums, written information
on the grief process, and/or memorial services.
Is it possible for a family
member to receive bereavement counseling through a hospice
even if the patient did not receive hospice services?
Yes. Most hospice programs serve as a resource to
the larger community for grief education and counseling. Bereaved
persons may contact their local hospice to inquire about the
services available. If that program is unable to meet the
need directly, they will provide the person with referral
information.
What on-line resources on
hospice referrals are available?
www.pahospice.org Pennsylvania Hospice Network
www.nhpco.org National
Hospice and Palliative Care Organization
www.aahpm.org American
Academy of Hospice and Palliative Medicine
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