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Home > Wellness > Health Library > Transitional Care Planning (PDQ®): Supportive care - Health Professional Information [NCI]
This information is produced and provided by the National Cancer Institute (NCI). The information in this topic may have changed since it was written. For the most current information, contact the National Cancer Institute via the Internet web site at http://cancer.gov or call 1-800-4-CANCER.
Nearly 90% of all cancer care is delivered in outpatient settings. This places increased responsibility on the patient and family  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. 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. 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, and those in a rural setting—may be at a higher risk of experiencing fragmented care.
A team approach to the care of patients and their families is optimal to meet their needs, which frequently are unrecognized and complex. 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.
In this summary, unless otherwise stated, evidence and practice issues as they relate to adults are discussed. The evidence and application to practice related to children may differ significantly from information related to adults. When specific information about the care of children is available, it is summarized under its own heading.
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. 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. 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. Routine re-evaluations of the patient and family biopsychosocial status need to be part of the management process in both inpatient and ambulatory care.
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.
Successful discharge planning and planning for transitions begin with an adequate biopsychosocial assessment of the patient and family. 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:
(Refer to the PDQ summary on Spirituality in Cancer Care for more information.)
(Refer to the PDQ summary on Nutrition in Cancer Care for more information.)
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. 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 Grief, Bereavement, and Coping With Loss 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]
Home Care Considerations
Caring for a patient at home places increased technical and emotional demands on the family. 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. 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.[3,4,5] Some patient groups are at a higher risk  (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. 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. Adequate pain and symptom management is a key component to successful home management, but this can only be accomplished if the family and primary caregiver understand the need for the control of pain and other symptoms. (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.[12,13,14] 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.[15,16,17] (Refer to the PDQ summary on Adjustment to Cancer: Anxiety and Distress.)
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. 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. 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.
During transitions, advance directives and the need for durable power of attorney should be discussed with the patient and the family. It is important that the patient make his or her wishes known to the physician and the family, well in advance if possible. 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. 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.
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 Grief, Bereavement, and Coping With Loss 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.
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. Advance directives are useful only if they are used as a basis for communication between patient and physician, not as a substitute for communication. A survey of 125 family proxies of patients who died found that 81% of patients completed advance directives, but only 57% made plans with their doctors to ensure that their directives were followed.
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.
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.
This summary is written and maintained by the PDQ Supportive and Palliative Care Editorial Board, which is editorially independent of NCI. The summary reflects an independent review of the literature and does not represent a policy statement of NCI or NIH. More information about summary policies and the role of the PDQ Editorial Boards in maintaining the PDQ summaries can be found on the About This PDQ Summary and PDQ NCI's Comprehensive Cancer Database pages.
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Purpose of This Summary
This PDQ cancer information summary for health professionals provides comprehensive, peer-reviewed, evidence-based information about patient transition from inpatient to outpatient. It is intended as a resource to inform and assist clinicians who care for cancer patients. It does not provide formal guidelines or recommendations for making health care decisions.
Reviewers and Updates
This summary is reviewed regularly and updated as necessary by the PDQ Supportive and Palliative Care Editorial Board, which is editorially independent of the National Cancer Institute (NCI). The summary reflects an independent review of the literature and does not represent a policy statement of NCI or the National Institutes of Health (NIH).
Board members review recently published articles each month to determine whether an article should:
Changes to the summaries are made through a consensus process in which Board members evaluate the strength of the evidence in the published articles and determine how the article should be included in the summary.
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National Cancer Institute: PDQ® Transitional Care Planning. Bethesda, MD: National Cancer Institute. Date last modified <MM/DD/YYYY>. Available at: http://cancer.gov/cancertopics/pdq/supportivecare/transitionalcare/HealthProfessional. Accessed <MM/DD/YYYY>.
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Last Revised: 2013-01-09
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