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Table of Contents Purpose of This PDQ Summary
Overview
Definition(s)
Screening Components Specific to Biopsychosocial Assessment
Comprehensive Biopsychosocial Assessment
Biopsychosocial Intervention and/or Options
Biopsychosocial Management and Follow-up
Special Considerations
End-of-Life Decisions
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Changes to This Summary (10/24/2008)
Questions or Comments About This Summary
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Purpose of This PDQ Summary
This PDQ cancer information summary provides comprehensive, peer-reviewed information for health professionals about patient transition from inpatient to outpatient. This summary is reviewed regularly and updated as necessary by the PDQ Supportive and Palliative Care Editorial Board.
Information about the following is included in this summary:
- Assessment.
- Intervention.
- Follow-up.
This summary is intended as a resource to inform and assist clinicians and other health professionals who care for cancer patients during and after cancer treatment. It does not provide formal guidelines or recommendations for making health care decisions. Information in this summary should not be used as a basis for reimbursement determinations.
This summary is also available in a patient version, which is written in less technical language, and in Spanish.
Back to Top Overview
Nearly 90% of all cancer care is delivered in outpatient settings.[1] This
places increased responsibility on the patient and family [2] and requires a
coordinated approach by the health care system. While health care continues to
increase in complexity, regulatory and fiscal pressures have become more
restrictive.[3] Optimal care is now dependent on careful planning across
different care settings to ensure a continuum of care. Patients now move
across numerous care settings during treatment (e.g., the transition from being
an inpatient at a hospital to being an outpatient in need of home care). Key
components to successful outpatient and home care treatment of patients with
cancer are a coordinated team for delivery of health care, an involved and
committed patient and/or family, and the availability of ongoing support and
education for the patient and family. (Throughout this section, the broad term family has been used to refer to individuals who are
closely bonded socially to the patient. The nature of close relationships
varies widely, and some people who are considered family may not be next of kin
or immediate relatives. In the home care setting, these individuals are
frequently caregivers for the ill person.) Not only is the delivery of care at
risk if care is fragmented, but the demands of illness may place families
at risk for job loss and economic hardship as they struggle to care for their
family members at home.[4] The planning for and delivery of home
care services to patients and their families are often fragmented. The most
vulnerable of those experiencing cancer—such as those with a low income,
urban-dwelling minorities,[5] and those in a rural setting—may be at a higher
risk of experiencing fragmented care.[6]
A team
approach to the care of patients and their families is optimal to meet their needs, which frequently are unrecognized and complex.[7] Depending on the
diagnosis, disease stage, level of nursing care required, and a variety of
psychosocial factors, patient needs range from low technology to high technology and
from low intensity of support to high intensity of support. Care needs are dictated by medical and biologic factors
and by demographics, setting (urban vs. rural), and psychosocial
factors. Thus, care needs are unique to each patient and family.
However, the delivery of care for those in transition and for those in
need of assessment, planning, and ongoing management is challenging and time
consuming and may become unsystematic and haphazard.
References
-
Haylock PJ: Home care for the person with cancer. Home Healthc Nurse 11 (5): 16-28, 1993 Sep-Oct.
[PUBMED Abstract]
-
Given BA, Given CW: Family home care for individuals with cancer. Oncology (Huntingt) 8 (5): 77-83; discussion 86-8, 93, 1994.
[PUBMED Abstract]
-
Wolfe LC: A model system. Integration of services for cancer treatment. Cancer 72 (11 Suppl): 3525-30, 1993.
[PUBMED Abstract]
-
Muurinen JM: The economics of informal care. Labor market effects in the National Hospice Study. Med Care 24 (11): 1007-17, 1986.
[PUBMED Abstract]
-
O'Hare PA, Malone D, Lusk E, et al.: Unmet needs of black patients with cancer posthospitalization: a descriptive study. Oncol Nurs Forum 20 (4): 659-64, 1993.
[PUBMED Abstract]
-
Buehler JA, Lee HJ: Exploration of home care resources for rural families with cancer. Cancer Nurs 15 (4): 299-308, 1992.
[PUBMED Abstract]
-
Glajchen M: The emerging role and needs of family caregivers in cancer care. J Support Oncol 2 (2): 145-55, 2004 Mar-Apr.
[PUBMED Abstract]
Back to Top Definition(s)
Transitional care can be defined as care that is required to facilitate a
shift from one disease stage and/or place of care to another. For example, as
a disease progresses, a patient may proceed through phases of illness that
require vastly different levels of emphasis in the goals of care and,
consequently, in the nature of care delivery. An individual may have a disease
that is amenable to curative therapy; the major goal of therapy may focus on
this. Alternatively, another stage of cancer may be more amenable to an intense focus on
palliation. In many cases, a balance between curative therapy and palliation is the goal. For increasing
numbers of individuals, challenging transitions also occur from illness to
health. Transitions also occur with movement from one level of care to
another, such as from inpatient acute care to subacute care, nursing home,
rehabilitation facility, home care, or hospice care. The process of planning
for these transitions is frequently referred to as discharge planning because
it implies a release from one facility to another. Transitions may occur on an outpatient basis when the patient no longer benefits from tumor-directed therapy and would benefit from a hospice or palliative care referral made directly by the outpatient staff. Nonetheless, discharge
planning must embrace the concept of the continuum of care, or care will become
fragmented. The site of care is dictated by disease stage and/or
associated comorbid factors that complicate oncologic treatment, by patient or family values and goals of care, and by
fiscal or other factors associated with access to care. All transitions
necessitate some degree of change. A change, whether viewed as positive or
negative, generates stress for the patient, family, and staff. Protocols
for these transitions should be developed with the goal of minimizing stress
and ensuring good patient care.
Optimal and successful transitions can be ensured through
an integrated, seamless relationship between inpatient and outpatient care.
Outpatient care is broadly defined to include home care, rehabilitation units
or centers, skilled nursing facilities, nursing homes, and hospice care.
Discharge planning can be improved through a coordinated systems approach,
which may place a community liaison nurse and/or social worker as
intermediaries among the hospital, major home health care companies,
rehabilitation facilities, nursing homes, and other supportive care
resources.[1] A coordinator of the diverse array of health care professionals
is imperative, and communication between the professionals is most important.
Often, it is the person with the illness or his or her family who carries
information from one member of the health care team to another. As an illness
becomes more burdensome and complex, a formalized and defined mechanism that is
clear to all team members is imperative. Underpinning the approach to patient
care should be a biopsychosocial model that assumes that illness is not only a
biological phenomenon but also a psychological and social one.[2] In addition,
and most importantly, this model must underpin transitions through varying
goals of care and foci of treatment.
Routine and comprehensive biopsychosocial evaluation performed by a trained
member of the health care team, preferably a medical social worker or a
clinical nurse specialist, should complement the physician’s efforts to begin
the planning of a strategy of care. For the assessment of the overall goals of
care, it is imperative that the treating clinician be cognizant of the need to
guide the patient through the varying options for care based on the balance
between disease status, treatment possibilities, functional status, patient and
family goals, and their interpretation of quality-of-life parameters. Ideally,
the assessment of transitional needs should be performed at the time of
admission to any inpatient facility and at critical points during the course of
disease, including diagnosis, completion of curative treatment protocols,
relapse, and terminal phase. It is essential that this assessment be routine
because many changes will occur over time in the patient’s and family’s goals
of care, and in the family’s willingness and ability to care for the patient.
Reassessment is essential for successful home care, medical compliance, and
stress management.[3] Routine re-evaluations of the patient and family
biopsychosocial status need to be part of the management process in both inpatient and ambulatory care.
References
-
Wolfe LC: A model system. Integration of services for cancer treatment. Cancer 72 (11 Suppl): 3525-30, 1993.
[PUBMED Abstract]
-
McDaniel S, Hepworth J, Dogerty W: A new prescription for family health care. Family Therapy Networker 17 (1): 18-29, 1993.
-
Beck-Friis B, Strang P: The organization of hospital-based home care for terminally ill cancer patients: the Motala model. Palliat Med 7 (2): 93-100, 1993.
[PUBMED Abstract]
Back to Top Screening Components Specific to Biopsychosocial Assessment
Not all facilities or primary care providers have access to health care
personnel dedicated to providing initial and ongoing biopsychosocial and
functional independence assessments, especially in rural areas. To facilitate
development of these approaches in the absence of such personnel, the following
components are recommended for identifying patients at risk for problems during
transitions.
Back to Top Comprehensive Biopsychosocial Assessment
Successful discharge planning and planning for transitions begin with an
adequate biopsychosocial assessment of the patient and family.[1] This
assessment should recognize patients who need help as well as those who are not
getting enough help.[2,3] The following areas require assessment:
- Physiological:
- Type of cancer.[4]
- Functional status.
- Symptom profile.
- Disease stage.
- Disease status (new diagnosis, recurrent, progressive, or remission).
- Smoking status. (Refer to the PDQ summary on Smoking Cessation and Continued Risk in Cancer Patients for more information.)
- Nutrition status. (Refer to the PDQ summary on Nutrition in Cancer Care for more information.)
- Metastasis.
- Impact of current treatment.
- Treatment options for the future.
- Impairment, disability, and/or handicap; or functional independence,
including cognitive ability. (Refer to the PDQ summary on Cognitive Disorders and Delirium for more information.)
- Demographics of patient and caregiver:
- Age, marital status, parental status, and education/occupation.[4]
- Sex.[5]
- Length of hospital stay.[6]
- Primary language.
- Cultural background; relevant beliefs and practices.
- Physical barriers to community/home re-entry (e.g., does the patient live alone? does the patient or family have other responsibilities?).
- Psychological:
- Motivation (including that of family).
- Other beliefs, values, and cultural systems.[7]
(Refer to the PDQ summary on Spirituality in Cancer Care for more information.)
- Pre-illness family stability.[8]
- Communication patterns within the family and with the health
care team and community.
- Patient and family perception of illness.
- Patient and family perception of quality of life.
- Patient and family fears and concerns about the future, and mechanisms
for dealing with these issues.
(Refer to the PDQ summary on Normal Adjustment and the Adjustment Disorders for more information.)
- History of coping patterns with previous stressful events and crisis
management.
(Refer to the PDQ summary on Post-traumatic Stress Disorder for more information.)
- Patient and family life cycle position.
- Significant family history:
- Medical and psychiatric illnesses.
- Health
behaviors (e.g., alcohol abuse, drug abuse, history of physical abuse, history of sexual abuse, smoking practices, and sexual
practices). (Refer to the PDQ summary on Substance Abuse Issues in Cancer for more information.)
- History of health and mental health use patterns.
- Patient and family visions and goals of therapy.
- Spiritual:
- Spiritual beliefs or sense of spirituality.
- Spiritual distress and spiritual issues.
- Religious affiliation and level of importance.
- Religious beliefs and practices as they bear on management of the illness and its treatment.
- Involvement of members of the religious community, or degree of social
support available through the religious community.
(Refer to the PDQ summary on Spirituality in Cancer Care for more information.)
- Social:
- Knowledge of available support systems (nuclear and extended family, friends,
community, and spiritual networks); knowledge of the skills, strengths,
and weaknesses of these systems and individuals within them; and the ability to access the systems.
- Knowledge about hospice care (open-access hospice).
- Knowledge about palliative care.
- Support system abilities to provide physical assistance when needed
(e.g., transfers, wound care, bladder or bowel care, and lifting).
- Employment history and flexibility of employment.
-
Insurance assessment, including coverage for the following:
- Medications (prescription plans).
- Medical equipment.
- Skilled home care.
- Postacute care.
- Hospice care. (Refer to the PDQ summary on Last Days of Life for more information.)
-
Financial assessment.
- Transportation availability.
- Accessibility of home for medical equipment.
- Handicap access to home.
- Knowledge and use of community resources.
- Support system for primary caregiver, including the following:
- Availability of other individuals who can share the burden of care.
- Availability of respite for the primary caregiver.
- Legal and advance directives:
- Will preparation or update, and estate planning.
- Living will.
- Durable power of attorney for health care (also known as medical power of attorney or health care proxy).
- Legally defined surrogate.
- Guardianship for dependent children.
- Resuscitation status: inpatient Do Not Resuscitate (DNR) and outpatient or community DNR orders.
- End-of-life care preferences (e.g., hydration, antibiotics, sedation for refractory symptoms, enteral or parenteral nutrition). (Refer to the PDQ summary on Last Days of Life for more information.)
References
-
King C: Five steps to improving assessment skills. Home HealthCare Consultant 4 (10): 42-54, 1997.
-
Mor V, Allen SM, Siegel K, et al.: Determinants of need and unmet need among cancer patients residing at home. Health Serv Res 27 (3): 337-60, 1992.
[PUBMED Abstract]
-
Curry C, Cossich T, Matthews JP, et al.: Uptake of psychosocial referrals in an outpatient cancer setting: improving service accessibility via the referral process. Support Care Cancer 10 (7): 549-55, 2002.
[PUBMED Abstract]
-
Costantini M, Camoirano E, Madeddu L, et al.: Palliative home care and place of death among cancer patients: a population-based study. Palliat Med 7 (4): 323-31, 1993.
[PUBMED Abstract]
-
Allen SM: Gender differences in spousal caregiving and unmet need for care. J Gerontol 49 (4): S187-95, 1994.
[PUBMED Abstract]
-
Yost LS, McCorkle R, Buhler-Wilkerson K, et al.: Determinants of subsequent home health care nursing service use by hospitalized patients with cancer. Cancer 72 (11): 3304-12, 1993.
[PUBMED Abstract]
-
Taylor EJ, Ferrell BR, Grant M, et al.: Managing cancer pain at home: the decisions and ethical conflicts of patients, family caregivers, and homecare nurses. Oncol Nurs Forum 20 (6): 919-27, 1993.
[PUBMED Abstract]
-
McDaniel S, Hepworth J, Dogerty W: A new prescription for family health care. Family Therapy Networker 17 (1): 18-29, 1993.
Back to Top Biopsychosocial Intervention and/or Options
- Places for care:
- Institutional:
- Hospital.
- Rehabilitation unit.
- Long-term acute care.
- Skilled nursing facility.
- Inpatient hospice unit.[1,2]
- Residential:
- Home.
- Assisted-living facility.
- Nursing home.[3]
- Possible team members for delivery of care:
- Nurse, advance practice nurse (nurse practitioner, clinical nurse specialist, oncology, hospice, home care, rehabilitative, palliative care, radiation therapy).
- Physician (oncologist, hospice, palliative care, primary care provider, general practitioner, internist, physiatrist [physician who specializes in physical medicine and rehabilitation]).
- Dietitian.
- Physical therapist.
- Occupational therapist.
- Medical social worker: assessment and referral for concrete
services.[4]
- Mental health professional: psychiatric nurse, psychiatric social
worker, psychologist, and psychiatrist.
- Family minister, chaplain, priest, rabbi, or other clergy.
- Companion.
- Nursing assistants (may possibly be obtained
through sectarian or nonsectarian family agencies for a minimal fee
or free of charge, or may be obtained through proprietary home care
agencies at patient and/or family expense).
- Programs offering a range of skills for delivery of care:
- Home health agencies.
- Hospice programs.
- Palliative care (consultation) programs.
- Community psychosocial support programs.
- Home infusion agencies.
-
Bereavement programs.[5]
- Legal and/or advanced directives:
- Physician.
- Hospital social worker.
- Family attorney.
- Legal Aid Society.
- Law school clinics.
- Maintenance of written documentation regarding patient’s wishes.
- Pharmaceutical support:
- Pain and symptom management (e.g., opioids, anxiolytics, antidepressants, antiemetics, and appetite stimulants).[2,6-8]
(Refer to the PDQ summary on Pain for more information.)
- Chemotherapy.
- Transfusions (blood products).
- Antibiotics.
- Growth factors.
- Nutrition (enteral and total parenteral).
(Refer to the PDQ summary on Nutrition in Cancer Care for more information.)
- Respiratory therapy.
- Wound and skin preparations.
- Nutrition:
- Standard oral.
- Supplemental:
- Oral.
- Enteral nutrition by nasogastric feeding, gastrointestinal, gastrojejunostomy, or percutaneous endoscopic gastrostomy tubes.
- Parenteral nutrition (PN), central or peripheral.[9]
- None (as an option).
- Evaluation of nutritional status and home education.
(Refer to the PDQ summary on Nutrition in Cancer Care for more information.)
- Special devices:
- Ostomies/drainage devices:
- Gastrostomy.
- Colostomy.
- Ileostomy.
- Tracheostomy.
- Pleural fluid drains (e.g., chest tube and Denver catheter).
- Biliary drainage tube.
- Abscess drainage devices.
- Percutaneous nephrostomy tube.
- Paracentesis draining devices.
- Assistive devices:
- Hospital bed.
- Commode chair.
- Wheelchair.
- Wheelchair
cushions.
- Scooter.
- Walker.
- Cane.
- Crutches.
- Braces.
- Prostheses.
- Handheld shower.
- Shower/tub chair.
- Orthoses.
- Specialized mattress or overlay.
- Overbed trapeze.
- Mechanical lifts.
- Catheters:
- Central venous access catheter.
- Peripheral
catheter (e.g., peripherally inserted central catheter).
- Dialysis catheter.
- Urinary catheter: condom catheter, indwelling catheter (Foley or suprapubic).
- Epidural or intrathecal catheter.
-
Venous pumps (permanent or temporary):
- Chemotherapy.
- Opioids (subcutaneous infusions for opioids).
- Pain medication. (Refer to the PDQ summary on Pain for more information.)
- Suction equipment:
- Nasogastric and endotracheal suctioning devices.
- Yankur suction tube.
- Respiratory:
- Oxygen (portable, stationary).
- Assisted ventilation (portable respirator, continuous positive airway pressure, bi-level positive airway pressure, Vapotherm humidification system).
- Respiratory treatments (chest physiotherapy, intermittent positive pressure breathing inhalers, or nebulizer treatments).
References
-
Plumb JD, Ogle KS: Hospice care. Prim Care 19 (4): 807-20, 1992.
[PUBMED Abstract]
-
Ramsay A: Care of cancer patients in a home-based hospice program: a comparison of oncologists and primary care physicians. J Fam Pract 34 (2): 170-4, 1992.
[PUBMED Abstract]
-
Jordhøy MS, Saltvedt I, Fayers P, et al.: Which cancer patients die in nursing homes? Quality of life, medical and sociodemographic characteristics. Palliat Med 17 (5): 433-44, 2003.
[PUBMED Abstract]
-
Jones RV, Hansford J, Fiske J: Death from cancer at home: the carers' perspective. BMJ 306 (6872): 249-51, 1993.
[PUBMED Abstract]
-
Whittam EH: Terminal care of the dying child. Psychosocial implications of care. Cancer 71 (10 Suppl): 3450-62, 1993.
[PUBMED Abstract]
-
Wotring RA: Cancer pain management. Home Healthc Nurse 11 (5): 40-4, 1993 Sep-Oct.
[PUBMED Abstract]
-
Herbst LH, Strause LG: Transdermal fentanyl use in hospice home-care patients with chronic cancer pain. J Pain Symptom Manage 7 (3 Suppl): S54-7, 1992.
[PUBMED Abstract]
-
McCormack A, Hunter-Smith D, Piotrowski ZH, et al.: Analgesic use in home hospice cancer patients. J Fam Pract 34 (2): 160-4, 1992.
[PUBMED Abstract]
-
Howard L: Home parenteral and enteral nutrition in cancer patients. Cancer 72 (11 Suppl): 3531-41, 1993.
[PUBMED Abstract]
Back to Top Biopsychosocial Management and Follow-up
Biopsychosocial assessment is a dynamic process. As indicated
previously, the initial assessment undertaken at the time of diagnosis or
hospital discharge should be re-examined at crisis points throughout the course
of an illness. These crisis or transition points can occur at times of disease
progression or relapse or at times of functional change. The shift into the
posttreatment period also represents a significant transition (see the Special
Considerations section). Other critical points could occur at the time of a
psychosocial crisis such as death or illness of a loved one or the caretaker,
or at the time of a social crisis such as loss of a job or the transition to a nursing home.
Members of the health care team performing reassessments should be aware that
new care needs for both patient and family are often associated with change in
the patient’s mobility and the inability of the support system to provide
adequate care.[1] Changes in biopsychosocial status can occur rapidly, and it
is advisable that the biopsychosocial reappraisal be built into any outpatient
or home care routine.
Finally, any biopsychosocial model of care must recognize that an illness,
fatal or not, engenders losses and thus the psychological mechanism of
bereavement. (Refer to the PDQ summary on Loss, Grief, and Bereavement for more information.) Cancer temporarily or permanently disrupts lives, dreams, hopes,
careers, aspirations, integrity, and a sense of security. Feelings are played
out in ways that are unique to each patient and family. These feelings are
healthy and necessary for psychological healing and renewal. However, if these
feelings are not understood and are acted out in destructive ways, the effects
can be devastating. Likewise, if the emotional crisis generated by an illness
is successfully managed, patients and families can experience psychological
growth and maturity. Psychosocial management of cancer, regardless of its
outcome, should be an integral part of care and should be available in all
cancer settings to ensure complete recovery, in its most broad sense.[2,3]
References
-
Mor V, Allen SM, Siegel K, et al.: Determinants of need and unmet need among cancer patients residing at home. Health Serv Res 27 (3): 337-60, 1992.
[PUBMED Abstract]
-
McDaniel S, Hepworth J, Dogerty W: A new prescription for family health care. Family Therapy Networker 17 (1): 18-29, 1993.
-
Whittam EH: Terminal care of the dying child. Psychosocial implications of care. Cancer 71 (10 Suppl): 3450-62, 1993.
[PUBMED Abstract]
Back to Top Special Considerations
Home care considerations
Caring for a patient at home places increased technical and emotional demands
on the family.[1] Many families have numerous out-of-home responsibilities and,
in addition, family members might be physically or psychosocially compromised
and thus unable to assume the primary care role.[2] The following factors need
to be assessed when determining whether a spouse or caregiver can handle home
care: the caregiver’s age, health, motivation, and sex (women are more likely
to provide home care); the length of hospital stay (prolonged stay may
complicate transition to home care); other demands on the caregiver; the degree
of patient distress (particularly pain); the technical nature of care; and
decision-making skills required for care delivery.[3-5] Some patient groups
are at a higher risk [6] (e.g., older black women who are alone and poor and
who have multiple chronic illnesses are at risk for difficulties after they
leave the hospital). Rural patients are also at risk for home care
complications, particularly if the terminal phase of disease is prolonged and
physical debilitation increases.[5] Access to available health care may be limited. The importance of assessing the family’s
motivation and ability to provide care for the patient cannot be stressed enough.
Assessment must be broad and include the areas discussed above, and where
appropriate, must also include the level of pre-existing interpersonal
conflicts and the family’s beliefs and values with regard to home care, dying,
and the use of opioids for pain control.[7] Adequate pain and symptom
management is a key component to successful home management,[8] but this can
only be accomplished if the family and primary caregiver understand the need
for the control of pain and other symptoms.[9] (Refer to the following PDQ summaries for more information: Pain; Cardiopulmonary Syndromes; Gastrointestinal Complications; Fatigue; Nausea and Vomiting; and Fever, Sweats, and Hot Flashes.) Health care providers and
caregivers need to understand that uncontrolled symptoms, particularly poorly controlled pain, can dramatically increase the physical and psychological
burdens of caregiving.[10,11] There should be an understanding of whom to call for support or advice regarding problems that may arise. As an
illness progresses, the need for consistent personnel who know the ill person’s
situation becomes the key component of successful delivery of care in the home.[12-14] The central role of family caregivers in cancer management is increasingly recognized. Family caregivers play an essential role in promoting compliance with medical treatment, managing side effects, performing practical tasks, and providing emotional and social support.[10,11] It is also noteworthy that caregivers often function as proxies for patients in reporting symptoms and psychological distress; however, studies show that family caregivers tend to overestimate the psychosocial distress of patients, which may be a result of their own underreported burden and distress.[15-17] (Refer to the PDQ summary on Normal Adjustment and the Adjustment Disorders.)
Insurance and financial considerations
Other important issues for assessment in transitional care planning include
insurance coverage, the availability of community resources, and legal concerns. Most insurance companies cover home care, but some
policies limit services to specified settings; for example, payment may depend on the patient having already been hospitalized or needing skilled nursing services.[2] It is important to ascertain insurance limits
on specific services as well as lifetime limitations. Primary care physicians,
nurses, and social workers may need to assume the role of patient advocate when
dealing with third-party insurers, case managers, and managed care
companies.[2] For these reasons it is important to design a home care plan
that provides adequate safety to the patient, is least distressing to the
family, and utilizes resources appropriately. It is often helpful to explore
other resources that do not require insurance or patient payment, including
sectarian as well as nonsectarian family agencies, which may provide limited
unskilled services. Nursing assistants and aides (unskilled nursing services)
are usually not covered by insurance; however, hospice care may cover this
expense. Proprietary home care services provide this care but at the expense
of the patient and family.
Cancer in the workplace
Age, gender, ethnic group, and cancer type affect the working status of cancer survivors. Education of coworkers plus employment counseling for the patient are helpful in making this transition.[18]
Legal considerations
During transitions, advance directives and the need for durable power of
attorney should be discussed with the patient and the family.[19] It is
important that the patient make his or her wishes known to the physician and
the family, well in advance if possible.[20] Health care personnel need to be
cognizant of widely varying cultural approaches to these discussions. This
discussion and the resolution of these issues should be thoroughly documented.
Communication among the health care team, including patient and family, is the
key to successful transitional care planning through all settings and disease
stages. It is essential that a mechanism for communication be in place to
ensure successful collaboration. This mechanism may be verbal or written, but
a detailed written document that flows across settings is essential for
ensuring continuity of care.[2] It is most important not to leave this type of
planning until the late stages of an illness. As a patient moves through
different physical environments, it is important that this information also be
transferred to the appropriate caregivers.
References
-
Cameron JI, Franche RL, Cheung AM, et al.: Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer 94 (2): 521-7, 2002.
[PUBMED Abstract]
-
Maloney CH, Preston F: An overview of home care for patients with cancer. Oncol Nurs Forum 19 (1): 75-80, 1992 Jan-Feb.
[PUBMED Abstract]
-
Costantini M, Camoirano E, Madeddu L, et al.: Palliative home care and place of death among cancer patients: a population-based study. Palliat Med 7 (4): 323-31, 1993.
[PUBMED Abstract]
-
Allen SM: Gender differences in spousal caregiving and unmet need for care. J Gerontol 49 (4): S187-95, 1994.
[PUBMED Abstract]
-
Yost LS, McCorkle R, Buhler-Wilkerson K, et al.: Determinants of subsequent home health care nursing service use by hospitalized patients with cancer. Cancer 72 (11): 3304-12, 1993.
[PUBMED Abstract]
-
O'Hare PA, Malone D, Lusk E, et al.: Unmet needs of black patients with cancer posthospitalization: a descriptive study. Oncol Nurs Forum 20 (4): 659-64, 1993.
[PUBMED Abstract]
-
Taylor EJ, Ferrell BR, Grant M, et al.: Managing cancer pain at home: the decisions and ethical conflicts of patients, family caregivers, and homecare nurses. Oncol Nurs Forum 20 (6): 919-27, 1993.
[PUBMED Abstract]
-
Coyle N, Cherny NI, Portenoy RK: Subcutaneous opioid infusions at home. Oncology (Huntingt) 8 (4): 21-7; discussion 31-2, 37, 1994.
[PUBMED Abstract]
-
Wotring RA: Cancer pain management. Home Healthc Nurse 11 (5): 40-4, 1993 Sep-Oct.
[PUBMED Abstract]
-
Ferrell BR, Cohen MZ, Rhiner M, et al.: Pain as a metaphor for illness. Part II: Family caregivers' management of pain. Oncol Nurs Forum 18 (8): 1315-21, 1991 Nov-Dec.
[PUBMED Abstract]
-
Ferrell BR, Rhiner M, Cohen MZ, et al.: Pain as a metaphor for illness. Part I: Impact of cancer pain on family caregivers. Oncol Nurs Forum 18 (8): 1303-9, 1991 Nov-Dec.
[PUBMED Abstract]
-
McMillan SC, Small BJ: Symptom distress and quality of life in patients with cancer newly admitted to hospice home care. Oncol Nurs Forum 29 (10): 1421-8, 2002 Nov-Dec.
[PUBMED Abstract]
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Costantini M, Higginson IJ, Boni L, et al.: Effect of a palliative home care team on hospital admissions among patients with advanced cancer. Palliat Med 17 (4): 315-21, 2003.
[PUBMED Abstract]
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Burge F, Lawson B, Johnston G: Family physician continuity of care and emergency department use in end-of-life cancer care. Med Care 41 (8): 992-1001, 2003.
[PUBMED Abstract]
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Lobchuk MM, Degner LF: Symptom experiences: perceptual accuracy between advanced-stage cancer patients and family caregivers in the home care setting. J Clin Oncol 20 (16): 3495-507, 2002.
[PUBMED Abstract]
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Lobchuk MM, Degner LF: Patients with cancer and next-of-kin response comparability on physical and psychological symptom well-being: trends and measurement issues. Cancer Nurs 25 (5): 358-74, 2002.
[PUBMED Abstract]
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Northouse LL, Mood D, Kershaw T, et al.: Quality of life of women with recurrent breast cancer and their family members. J Clin Oncol 20 (19): 4050-64, 2002.
[PUBMED Abstract]
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Schultz PN, Beck ML, Stava C, et al.: Cancer survivors. Work related issues. AAOHN J 50 (5): 220-6, 2002.
[PUBMED Abstract]
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Hofmann JC, Wenger NS, Davis RB, et al.: Patient preferences for communication with physicians about end-of-life decisions. SUPPORT Investigators. Study to Understand Prognoses and Preference for Outcomes and Risks of Treatment. Ann Intern Med 127 (1): 1-12, 1997.
[PUBMED Abstract]
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Grinspoon L: Update on Alzheimer's disease, part II. Harv Ment Health Lett 1 (9): 1-5, 1995.
Back to Top End-of-Life Decisions
The care of a person with cancer starts sometime after symptoms begin and a
diagnosis is made, and it continues either until the patient is in remission and
has sufficient follow-up to declare that there is a cure or until the patient
has died and the family is in bereavement. (Refer to the PDQ summaries on Last Days of Life and Loss, Grief, and Bereavement for more information.) Ideally, end-of-life decisions are made early in the process, before
there is a need. Although these issues are not pleasant or easy to think about,
they are often a part of an individual’s philosophical, moral, religious, or
spiritual make-up. If feelings about end-of-life issues are a part of a person’s
life-fabric, they need to be made known in order to be carried out. Because of
the sensitive nature of these decisions, this is not always the case. A
conspiracy of silence often exists that delays or prohibits discussions about these
issues. Patients do not want to worry their families; families are afraid that if
they initiate discussion about the topic, the patient will become depressed (refer to the PDQ summary on Depression for more information)
or give up; physicians often feel uncomfortable with these discussions and
do not want to worry the patient or family. People often believe that there is
plenty of time to talk about such issues; however, when the time for
end-of-life decisions comes, they are not able to make these decisions, the
issues remain unresolved, and the decisions are made by people who may not know
the patient’s wishes. Pediatric oncologists report significant anxiety
discussing death with parents and families, with 47% waiting for the family to
initiate the topic of advance directives.[1]
A first step in raising the issue with the patient in end-of-life decision-making is completion of the Health Care Proxy (HCP) form (e.g., a power of attorney
for medical decision-making form or a medical power of attorney form). These forms vary
by state, but the intent is the same. The HCP allows a patient to appoint an
individual to make medical decisions in the event that the patient is no longer
able to do so. Although the form may not need to be notarized, it must be
witnessed by two observers. In some states, the advantage of an HCP over a living
will is that in the HCP, the individual does not have to indicate exactly which decisions
should be made but instead says that the proxy “knows what I would want” under
the circumstances.
A living will or advance directive is similar to the HCP in that it allows a
person to declare in a more detailed fashion (a written statement) his or
her philosophies regarding medical care, nutrition, and other medical issues,
so that physicians and health care institutions can best carry out these
wishes. Living wills are not available or legally recognized in all states;
therefore, legalities in different locales should be explored.
Do Not Resuscitate (DNR) orders instruct physicians and other health care providers that a patient is not to undergo cardiopulmonary resuscitation (CPR) in the event of cardiac or pulmonary arrest. Physicians may recommend a DNR order when CPR would be considered medically futile and ineffective in returning the person to life. A patient may also request a DNR order when CPR is not consistent with his or her goals of care. It is advisable for a person who has clear thoughts about
these issues to initiate conversations with appointed health care agents (in the outpatient setting) and to
have forms completed as early as possible (e.g., before hospital admission)
instead of when the person loses the capacity to make such decisions. Although
persons with end-stage disease and their families are often uncomfortable
bringing up these issues, physicians and nurses can tactfully and respectfully
address these issues appropriately and in a timely fashion.
With the advent of the hospice movement and the passing of the Hospice Medicare
Benefit Act (1983), programs are available to facilitate the care of terminally ill individuals who choose to die at
home. Some states (e.g., New York) have DNR forms available for
individuals wishing to die at home, thus protecting them from mistakenly being
resuscitated should the situation arise. These advance directives are signed
by the patient’s physician—and also, in some cases, by the patient—and indicate the patient’s wishes and intent not to
be resuscitated. Whether a patient is being cared for in the home, the
hospital, hospice, a nursing home, or elsewhere, these issues are relevant and
important to address.
References
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Hilden JM, Emanuel EJ, Fairclough DL, et al.: Attitudes and practices among pediatric oncologists regarding end-of-life care: results of the 1998 American Society of Clinical Oncology survey. J Clin Oncol 19 (1): 205-12, 2001.
[PUBMED Abstract]
Back to Top Get More Information From NCI
Call 1-800-4-CANCER
For more information, U.S. residents may call the National Cancer Institute's (NCI's) Cancer Information Service toll-free at 1-800-4-CANCER (1-800-422-6237) Monday through Friday from 9:00 a.m. to 4:30 p.m. Deaf and hard-of-hearing callers with TTY equipment may call 1-800-332-8615. The call is free and a trained Cancer Information Specialist is available to answer your questions.
Chat online
The NCI's LiveHelp® online chat service provides Internet users with the ability to chat online with an Information Specialist. The service is available from 9:00 a.m. to 11:00 p.m. Eastern time, Monday through Friday. Information Specialists can help Internet users find information on NCI Web sites and answer questions about cancer.
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For more information from the NCI, please write to this address:
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- Bethesda, MD 20892-8322
Search the NCI Web site
The NCI Web site provides online access to information on cancer, clinical trials, and other Web sites and organizations that offer support and resources for cancer patients and their families. For a quick search, use our “Best Bets” search box in the upper right hand corner of each Web page. The results that are most closely related to your search term will be listed as Best Bets at the top of the list of search results.
There are also many other places to get materials and information about cancer treatment and services. Hospitals in your area may have information about local and regional agencies that have information on finances, getting to and from treatment, receiving care at home, and dealing with problems related to cancer treatment.
Find Publications
The NCI has booklets and other materials for patients, health professionals, and the public. These publications discuss types of cancer, methods of cancer treatment, coping with cancer, and clinical trials. Some publications provide information on tests for cancer, cancer causes and prevention, cancer statistics, and NCI research activities. NCI materials on these and other topics may be ordered online or printed directly from the NCI Publications Locator. These materials can also be ordered by telephone from the Cancer Information Service toll-free at 1-800-4-CANCER (1-800-422-6237), TTY at 1-800-332-8615.
Back to Top Changes to This Summary (10/24/2008)
The PDQ cancer information summaries are reviewed regularly and updated as new information becomes available. This section describes the latest changes made to this summary as of the date above.
Editorial changes were made to this summary.
Back to Top Questions or Comments About This Summary
If you have questions or comments about this summary, please send them to Cancer.gov through the Web site’s Contact Form. We can respond only to email messages written in English.
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Important:
This information is intended mainly for use by doctors and other health care professionals. If you have questions about this topic, you can ask your doctor, or call the Cancer Information Service at 1-800-4-CANCER (1-800-422-6237).
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