Informational Guide to Choosing the Best Hospice Care
What is Hospice Care?Hospice Care Definition
Curative
treatment is an approach in which the goal is to cure the disease and to
prolong life at all costs.
Palliative
care is not curative in nature but is designed to relieve pain and distress and
to control the symptoms of the disease. Symptoms that palliative care focuses
on relieving include: pain, nausea, vomiting, constipation, anorexia, malnutrition,
dyspnea or air hunger, psycho-social and spiritual issues, weight loss,
dehydration, weakness, risk for skin impairment, depression, Sleeplessness and
insomnia.
Patient and Caregiver Education
The way
hospice care is planned should affect the patient and caregiver in an honest
and straightforward method. It is thought that the fear of the unknown is
always greater than the fear of the known. Educating the caregiver in symptom
management, hands-on care of the patient, caring for body functions, and
teaching regarding the signs and symptoms of approaching hospice patient are
important to relieve fears.
How to Initiate Hospice Care
To initiate
hospice care, the attending physician must certify that the patient’s illness
is terminal and that the patient has a prognosis of 6 months or less to live.
The patient must be willing to forego any further curative treatment and be
willing to seek only palliative care. The patient and caregiver must understand
and agree that the care will be planned based on the comfort of the patient, and
that life-support measures may not necessarily be performed. The patient and
caregiver must also understand the prognosis and be willing to participate in
the planning of the care.
Admission to
a hospice program is the decision of the patient and their family, because not
all people need or desire hospice care. Autonomy is one of the attributes of
quality of health care. The patient or family should be the center of all-important
decisions taken in regard’s to the patient’s care, and there shouldn’t be any
decisions made without consulting the patient or their family first.
Objectives of Hospice Care
Managing
symptoms and improving the quality of life without life prolonging measures is
the main objective of hospice care. Allowing the patient and caregiver to be
involved in the decisions regarding the plan of care is a primary aspect of
hospice care, as well as encouraging the patient and caregiver to live life to
the fullest. Other objectives include: providing continuous support to maintain
patient/family confidences and reassurances to achieve these goals, educating
and supporting the primary caregiver in the home setting that the patient
chooses, and providing a clear understanding of death related issues as it
affects much on the performance of caregivers and the quality of hospice care.
Pediatric Hospices
81 million
children in the United States require pediatric hospice care. In the United
States alone, there are 2.5 million deaths annually. About 50,000 deaths are
pediatric 0-19 (2.2%). Children represent 25% of the US population. Half of
childhood deaths are in the first year of life, while half of infant deaths are
in the first month of life.
Pediatric Palliative Care Diagnosis
There are conditions for which curative treatment is possible but may
fail. The following are common diagnosis in children, which make them eligible
to receive hospice care.
•
Genetic/Congenital
(40%)
•
Neuromuscular
(40%)
•
Oncologic
(20%)
•
Respiratory
(12%)
•
Gastrointestinal
(10%)
•
Cardiovascular
(8%)
•
Advanced
or progressive cancer or cancer with a poor prognosis
•
Complex
and severe congenital or acquired heart disease
Models of Care
Hospice care
can be provided in the following settings and situations:
•
Inpatient
consultation palliative care teams
•
Inpatient
palliative care
•
Home
hospice
•
Perinatal
and neonatal hospice
•
Concurrent
care
•
Respite
Hospice Family Support-Know What Hospice Provides
Hospice care includes a diverse range of
services and forms of medical care. The care is done through daily activities to
minimize the stress for patients and their families. Among its major responsibilities, the interdisciplinary
hospice team manages the patient’s pain and symptoms. They also assist the
patient with the emotional, psychosocial, and spiritual aspects of dying.
The interdisciplinary team provides the
necessary drugs, medical supplies, and equipment, and they instruct the family
on how to care for the patient outside of the hospice. In addition, they
deliver special services like speech and physical therapy when needed. They
also make short-term inpatient care available when pain or symptoms become too
difficult to treat at home, or when the caregiver needs respite. And lastly,
they provide bereavement care and counseling to the surviving family and
friends of the patient.
A Great Team Can Make the Difficult Time Easy
Hospice care has diverse aspects and it requires a wide range of
services. A multi professional health team works together in caring for the
terminally ill patient. They develop and supervise the plan of care in
conjunction with all of those involved with the care. The interdisciplinary
team considers all aspects of the family unit, providing support to both the
dying patient and to the caregiver. The family is included in all decisions and
care planning because the care provided is patient-centric.
Medical Director
Every hospice should have
a doctor of medicine or osteopathy. They are known as the medical director and
they assume the overall responsibility for the medical component of the hospice
patient’s care program. The act as a consultant for the attending physician,
and they serve as a mediator between the interdisciplinary team and the
attending physician. The medical director plays a major role in creating
successful teamwork.
Nurse Coordinator
Every hospice should have
a registered nurse who coordinates the implementation of the plan of care for each
patient. They are in charge of performing the initial assessment, admitting the
patient to the hospice program, and developing the plan of care along with the
interdisciplinary team. The nurse coordinator also ensures the plan of care is
being followed, and they coordinate the assignments of the hospice nurses and
aides, facilitate meetings, and determine the methods of payments. The nurse
coordinator is vital in controlling the quality of care.
Social Worker
Social workers evaluate
and assess the psychosocial needs of the patient. They assist with community
resources and filing insurance papers. They also support the patient and
caregiver with emotional and grief issues. In addition, social workers assist
with counseling when communication difficulties are present. The role of social
workers helps in bridging the gaps between the patient family and the hospice
company.
Spiritual Coordinator
Spiritual coordinators must
have a seminary degree but can be affiliated with any church. The spiritual coordinator
is the liaison between the spiritual community and the interdisciplinary team.
They assist with the spiritual assessment of the patient, and they work closely
with the family to maintain their beliefs. They also develop the plan of care
regarding spiritual matters. In addition, they assist the patient and caregiver
in coping with fears and uncertainty. Lastly, they assist with funeral planning
and performing funeral services. This role is very important for maintaining the
public image of the hospice company.
Volunteer Coordinator
The volunteer coordinator
must have experience in volunteer work. They are responsible for assessing the
needs of the patient and caregiver for volunteer services. They provide companionship,
caregiver relief through respite care, and emotional support. Volunteers may
read to the patient, sit with the patient, or do grocery shopping or yard work.
Volunteers can improve the quality of life by spending more time on things,
which are not directly related to medical care.
Bereavement Coordinator
This position requires a
professional who has experience in dealing with grief issues. They assess the
patient and caregiver at admission to the hospice program and identify risk
factors that may be of concern following the death of the patient. They follow
the plan of care for the bereaved caregiver for at least a year following the
death. They may also provide counseling or refer to other counseling resources.
Hospice Pharmacist
Every hospice should have
a pharmacist who must be a licensed pharmacist and must be available for
consultation on the drugs the hospice patient may be taking. The hospice
pharmacist evaluates for drug-drug or drug-food interactions, appropriate drug
doses, and correct administration times and routes. The pharmacist is holds a
key role in preventing medication errors, and providing patient counseling
related to the medication errors.
Dietitian Consultant
The dietitian consultant
should be a licensed medical nutritional therapist (LMNTs), and should be
available for consultations and for diet counseling. The hospice nurse does
nutritional assessments at admission; if nutritional problems are noted, the
patient may be referred to an LMNT. This role is very important to improve the
quality of life of the hospice patient.
Hospice Aide
Hospice aides should be
certified nurse assistants who are supervised by the hospice nurses. They are
responsible for following the plan of care developed by the interdisciplinary
team. They assist the patient with bathing and personal care. They may also
assist the patient/caregiver with light housekeeping services.
Other Service Providers
The hospice team may also have some other professionals if needed, which
may include following positions:
·
Physical
therapist
·
Speech-language
pathologist
·
Occupation
therapist
These
positions are not for rehabilitative services, but may be necessary to assist
with improving the quality of life and care for the patient and caregiver.
The Hospice’s Responsibility After a
Patient’s Death (Bereavement Period)
Hospice care
does not end once the patient dies but usually continues for at least 1 year
with bereavement support. Even though the family feels they have prepared for
the death, facing the future without the person who died is difficult. The hospice
staff also goes through a grieving period for each patient who dies. Each
hospice provides support to their staff with support meetings and time to vent
their feelings and to heal. This role of the hospice is vital to keep society
stable and healthy after losing the people who have had an affect on people’s
lives.
Ethical Issues in Hospice Care
Hospice care
is complicated as it involves many ethical decisions throughout the care from
the period of the enrollment of the patient to the end of their care. Ethical
issues when dealing with hospice patients include withholding or withdrawing
nutritional support, the right to refuse treatment, and do not resuscitate
(DNR) orders. It is hoped that the patient’s wishes are made known in advance,
such as a living will or an advance directive, or that a durable power of
attorney has been appointed. It is imperative that the nurse is aware of the
organization’s ethical policies and procedures so that any questions and
concerns may be addressed appropriately and correctly.
Quality Care at the End of Life
It is the patient’s
right to receive the quality care at the end of their life. Feedback from
family members, patient, and employees, through surveys and inspections can be
used as sources to develop and improve future hospice plans. It is extremely
important to have a quality assurance program in place to minimize errors.
Hospice Performance Reports
The National
Summary of Hospice Care published the following reports, which can be helpful
in determining hospice performance.
NHPCO Performance Measure Reports:
NHPCO members also have access to
national-level summary statistics for the following NHPCO performance
measurement tools:
1. Patient Outcomes and Measures (POM)
(www.nhpco.org/outcomemeasures)
•Pain relief within 48 hours of
admission (NQF 0209)
•Avoiding unwanted hospitalization
•Avoiding unwanted CPR
2. Family Evaluation of Bereavement
Services (FEBS)
(www.nhpco.org/febs)
3. Survey of Team Attitudes and
Relationships (STAR)
(www.nhpco.org/star)
Job satisfaction (hospice-specific)
•Salary ranges
•Provider-level results
Myths About Hospice Care
Hospice care really means giving up all efforts.
No,
hospice care aims to provide comfort with dignity to someone who has been told
that nothing else can be done. If the person has no chances of survival, there still
is a chance that their quality of life can be improved. Love ones can be
trained to handle stress and manage the changes going on. In a broader picture,
hospice care minimizes the negative impact of death on society.
Hospice care only helps cancer or AIDS patients.
No, hospice care is not limited to cancer or AIDS. It
includes many other life-limiting illnesses such as end-stage heart, lung, or
kidney disease, or Alzheimer’s and other dementia's. It is always recommended
for family members to consult a physician or hospice social worker to check if the
patient in question qualifies for the hospice care.
A hospice is a place where people go to die.
It is true for inpatient hospices, since
most of the hospice clients receive this service at private residences,
assisted living communities, hospitals and long-term-care facilities. Some
patients and family members prefer to stay home and some prefer to utilize
hospice services in an institutionalized setting.
Receiving hospice care means that the patient is going to die shortly.
Hospice care does not accelerate the
process of death and it does not help to prolong life. It only improves the
quality of the patient’s remaining life. Many patients in hospice care get well
enough to go back to their normal lives. On the other hand, there are many
patients who have received hospice care several times in their lives. So, we
cannot say that hospice care always means that patient is going to die.
Hospice care will not allow me to keep my physician
No, your physician can be involved in
your care. Hospice physicians are typically the medical directors, and since
they have legal responsibilities with the hospice, they must also be involved.
It is the
doctor’s responsibility to recommend hospice care.
It is better that family members or
love ones initiate discussion of hospice care because sometimes it upsetting
for families if their doctor initiates this discussion. The patient himself, or
family members, can consult hospice social workers to find out if the patient
in question meets the criteria for obtaining hospice care.
Patients cannot quit hospice program.
No, patients can quit the hospice
program that they are enrolled in if their condition improves enough for them
to go back to their everyday lives. If for whatever reason their health
deteriorates again, they can rejoin and receive the care that is necessary.
Patients can’t receive other treatments with hospice care.
Patients can receive other treatments
if the care received improves the quality of life and does not prolong life.
A patient must have DNR to receive hospice care.
No
To be eligible for hospice care, patients have to be in the final stages of dying.
Hospice patients and families receive
care for an unlimited amount of time, depending upon the course of the illness.
There is no fixed limit on the amount of time a patient may continue to receive
hospice services.
Reliable care at the end of someone’s life is very expensive.
Medicare beneficiaries pay little or
nothing for hospice care. For those ineligible of Medicare, most insurance
plans, HMO’s, and managed care plans cover hospice care.
Families are not able to care for people with terminal illnesses.
Family members are encouraged,
supported, and trained by hospice professionals to care for their loved ones.
Hospice staff is on call for the patient and their families 24 hours a day, 7 days
a week, to help family and friends care for their loved ones.
Hospice care is just for the elderly.
No, hospice care is for anyone facing a
terminal illness, regardless of age. Children, adults, and elderly patients all
can receive hospice care if they meet the criteria of obtaining hospice
care.
Hospice care ends after the patient’s death.
No, it does not always end after
patient’s death. Bereavement services and grief support are available to family
members for up to one year after the death of the patient. Many families face
emotional issues after the death of loved ones. Hospice care is available to
resolve those issues and minimize the stress. Some may say that hospice care
has healing effects on the emotions of the patient and of their loved ones.
Hospice care is only for people who can accept death.
This is not necessarily true. The hospice
patient must be aware that the care that the hospice is providing them can lead
to recovery. While those affected by terminal illness struggle to come to terms
with death, hospices gently help them find their way at their own speed. Many
hospices welcome inquiries from families who are unsure about their needs and
preferences. It is always recommended to contact your physician and hospice
social worker to get advice. The hospice’s staff is readily available to
discuss all options and to facilitate open family decisions.
