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Transitional Care Planning (PDQ®)

  • Last Modified: 04/09/2014

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Special Considerations

Home Care Considerations
Insurance and Financial Considerations
Cancer in the Workplace
Legal 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 Hot Flashes and Night Sweats.) 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 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.[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.

  1. 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]

  2. 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]

  3. 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]

  4. Allen SM: Gender differences in spousal caregiving and unmet need for care. J Gerontol 49 (4): S187-95, 1994.  [PUBMED Abstract]

  5. 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]

  6. 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]

  7. 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]

  8. Coyle N, Cherny NI, Portenoy RK: Subcutaneous opioid infusions at home. Oncology (Huntingt) 8 (4): 21-7; discussion 31-2, 37, 1994.  [PUBMED Abstract]

  9. Wotring RA: Cancer pain management. Home Healthc Nurse 11 (5): 40-4, 1993 Sep-Oct.  [PUBMED Abstract]

  10. 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]

  11. 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]

  12. 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]

  13. 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]

  14. 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]

  15. 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]

  16. 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]

  17. 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]

  18. Schultz PN, Beck ML, Stava C, et al.: Cancer survivors. Work related issues. AAOHN J 50 (5): 220-6, 2002.  [PUBMED Abstract]

  19. 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]

  20. Grinspoon L: Update on Alzheimer's disease, part II. Harv Ment Health Lett 1 (9): 1-5, 1995.