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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.

Transitional Care Planning

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.

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.

References:

1. Haylock PJ: Home care for the person with cancer. Home Healthc Nurse 11 (5): 16-28, 1993 Sep-Oct.
2. Given BA, Given CW: Family home care for individuals with cancer. Oncology (Huntingt) 8 (5): 77-83; discussion 86-8, 93, 1994.
3. Wolfe LC: A model system. Integration of services for cancer treatment. Cancer 72 (11 Suppl): 3525-30, 1993.
4. Muurinen JM: The economics of informal care. Labor market effects in the National Hospice Study. Med Care 24 (11): 1007-17, 1986.
5. 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.
6. Buehler JA, Lee HJ: Exploration of home care resources for rural families with cancer. Cancer Nurs 15 (4): 299-308, 1992.
7. Glajchen M: The emerging role and needs of family caregivers in cancer care. J Support Oncol 2 (2): 145-55, 2004 Mar-Apr.

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:

1. Wolfe LC: A model system. Integration of services for cancer treatment. Cancer 72 (11 Suppl): 3525-30, 1993.
2. McDaniel S, Hepworth J, Dogerty W: A new prescription for family health care. Family Therapy Networker 17 (1): 18-29, 1993.
3. 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.

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.

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:

1. 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 in Cancer Care 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.
2. 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?).
3. 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 Adjustment to Cancer: Anxiety and Distress 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).
  • History of health and mental health use patterns.
  • Patient and family visions and goals of therapy.
4. 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.)

5. 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.
6. 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:

1. King C: Five steps to improving assessment skills. Home HealthCare Consultant 4 (10): 42-54, 1997.
2. 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.
3. 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.
4. 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.
5. Allen SM: Gender differences in spousal caregiving and unmet need for care. J Gerontol 49 (4): S187-95, 1994.
6. 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.
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.
8. McDaniel S, Hepworth J, Dogerty W: A new prescription for family health care. Family Therapy Networker 17 (1): 18-29, 1993.

Biopsychosocial Intervention and / or Options

1. 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][Level of evidence: II]
2. 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][Level of evidence: II]
  • 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).
3. 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]
4. 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.
5. Pharmaceutical support:
  • Pain and symptom management (e.g., opioids, anxiolytics, antidepressants, antiemetics, and appetite stimulants).[2,6];[7][Level of evidence: II][8][Level of evidence: III] (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.
6. 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.)

7. 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:

1. Plumb JD, Ogle KS: Hospice care. Prim Care 19 (4): 807-20, 1992.
2. 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.
3. 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.
4. Jones RV, Hansford J, Fiske J: Death from cancer at home: the carers' perspective. BMJ 306 (6872): 249-51, 1993.
5. Whittam EH: Terminal care of the dying child. Psychosocial implications of care. Cancer 71 (10 Suppl): 3450-62, 1993.
6. Wotring RA: Cancer pain management. Home Healthc Nurse 11 (5): 40-4, 1993 Sep-Oct.
7. 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.
8. McCormack A, Hunter-Smith D, Piotrowski ZH, et al.: Analgesic use in home hospice cancer patients. J Fam Pract 34 (2): 160-4, 1992.
9. Howard L: Home parenteral and enteral nutrition in cancer patients. Cancer 72 (11 Suppl): 3531-41, 1993.

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 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]

References:

1. 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.
2. McDaniel S, Hepworth J, Dogerty W: A new prescription for family health care. Family Therapy Networker 17 (1): 18-29, 1993.
3. Whittam EH: Terminal care of the dying child. Psychosocial implications of care. Cancer 71 (10 Suppl): 3450-62, 1993.

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.[3,4,5] 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.[12,13,14] 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.[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:

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.
2. Maloney CH, Preston F: An overview of home care for patients with cancer. Oncol Nurs Forum 19 (1): 75-80, 1992 Jan-Feb.
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.
4. Allen SM: Gender differences in spousal caregiving and unmet need for care. J Gerontol 49 (4): S187-95, 1994.
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.
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.
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.
8. Coyle N, Cherny NI, Portenoy RK: Subcutaneous opioid infusions at home. Oncology (Huntingt) 8 (4): 21-7; discussion 31-2, 37, 1994.
9. Wotring RA: Cancer pain management. Home Healthc Nurse 11 (5): 40-4, 1993 Sep-Oct.
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.
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.
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.
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.
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.
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.
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.
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.
18. Schultz PN, Beck ML, Stava C, et al.: Cancer survivors. Work related issues. AAOHN J 50 (5): 220-6, 2002.
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.
20. Grinspoon L: Update on Alzheimer's disease, part II. Harv Ment Health Lett 1 (9): 1-5, 1995.

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 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.[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. 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.[2]

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:

1. 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.
2. Bakitas M, Ahles TA, Skalla K, et al.: Proxy perspectives regarding end-of-life care for persons with cancer. Cancer 112 (8): 1854-61, 2008.

Changes to This Summary (04 / 09 / 2014)

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Last Revised: 2014-04-09

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