Information for Patients and Caregivers
Family Care-Givers Learning
to Care for Loved Ones Living with Cancer
1.2 million cancer patients will be newly diagnosed
in 1999 and 563,100 will die.
Early detection and aggressive multimodal
cancer therapy has resulted in longer life and
more care transitions for individuals diagnosed
Responsibility for patient care has transferred
from hospitals to home and family members.
Family caregivers provide much of the cancer
care and the demands of care may be profound.
Family members report receiving little information
or direction on how to monitor patient status
or how to care for equipment, manage symptoms
or when to contact health providers.
Family caregivers want information and feel
ignored and use trial and error means to find
the appropriate level of care.
Eighty-two percent of our patients need family
assistance for activities such as symptom management,
disability, mobility, dressings, and catheters.
Family members also deal with extensive coordination
Family caregivers provide at least eight hours
of care each week during the first year after
diagnosis. During active treatment, 40% report
more than 10 hours per week in care. This care
assumes the role equivalent to a part-time job.
For the year 1999, that would add up to 345
million uncompensated hours of care for those
newly diagnosed with breast, colon, prostate,
and lung cancer (165,865 person yrs.).
Family caregivers who are employed (20-25%
adult daughters primarily) report missing work,
taking personal days and vacation days to care,
and a small percentage quit or retire early
to provide care.
There is also a health cost to the family caregiver
as they experience fatigue, depression, burden,
and caring impacts on their physical health.
We have not fully explored the cost in personal,
physical, and mental health of the caregiver.
We know they give up leisure, physical exercise,
and proper nutrition but are unsure of the use
of medications such as tranquilizers or other
medications and primary care visits.
In pilot work, advanced practice nurses have
made a difference in caregiver distress and
preparation to care.
If even 15% of the patients have an avoidable
hospital readmission due to lack of caregiver
knowledge or skill, this could have a major
impact on costs to Medicare. If 15% of the newly
diagnosed patients with colon, prostate, lung
or breast cancer have a single day stay at $3,000
per day, $309,960,000 could be the cost to Medicare.
The quality of family care on patient outcomes
This is important to the health and well-being
of the United States, both the patients with
cancer and their family caregivers. Family care
is a hidden health care resource.
Research is needed in order to identify and
tailor the "appropriate interventions" to prepare
family caregivers to lower their uncertainty
regarding care and to ensure the best patient
Families need educational and informational
support to care. Advanced practice nurses may
be the appropriate health care providers for
Recommendations for Future Research
and Policy Activities
Future research needs to identify
and link cancer and its treatments with the
priority problems faced by patients and their
Priority problems are those that
if not addressed jointly by cancer centers,
oncologists, patients and their families, will
result in complications or delays in treatment,
slower recovery, or re-admission to a hospital.
Each of these factors increase the cost of treatment
to purchasers, the public, and to patients and
their family caregivers.
The National Institutes of Health should conduct
clinical trials leading to additional knowledge
- The characteristics of patients with cancer
and families who are more able to implement
home care strategies and those who need extra
- Determining what interventions are more
effective for patients and families in caring
for problems in the home.
- The cost savings to families and to the
health care system when patients and their
families are educated and able to implement
appropriate home care.
- Cost effectiveness of use of advanced practice
nurses to assist patients and family caregivers.
Public programs for the financing
of health care need to be developed through
agencies such as HCFA to offer reimbursement
incentives to Cancer Centers who demonstrate
effective programs for training and monitoring
patient and family cancer care at home.
Policy makers should encourage
and provide incentives for health purchasers,
consumer groups and provider organizations to
develop programs for training cancer patients
and families to provide effective care at home.
Tax incentives for those who provide
care should be considered as a public policy.
Home Care for Cancer: A Community-Based Model
In collaboration with the Walther Cancer Institute
and MSU Cancer Center Barbara A. Given, PhD,
RN, FAAN, Principal Investigator
Charles W. Given, PhD, Co-Principal Investigator