Transitional Care Planning (PDQ®): Supportive care - Patient Information [NCI]

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Transitional Care Planning

Introduction

This patient summary on transitional care planning is adapted from a summary written for health professionals by cancer experts. This and other credible information about cancer treatment, screening, prevention, supportive care, and ongoing clinical trials is available from the National Cancer Institute. This summary describes transitional care, assessment, and care options.

This summary is about planning for changes in level of care for adults with cancer.

What Is Transitional Care Planning?

Transitional care planning helps the patient's cancer care continue without interruption through different phases of the cancer experience.

Transition means passage from one phase to another. Transitional care planning is the bridge between two phases of care. As the cancer patient's treatment goals change or the place of care changes, the patient may encounter problems during the transition. Patients will need to make decisions that balance disease status and treatment options with family needs, finances, employment, spiritual or religious beliefs, and quality of life. There may be practical problems such as finding an appropriate rehabilitation center, obtaining special equipment, or paying for needed care. There may be mental health problems such as depression or anxiety. Transitional care planning helps identify and manage these problems so the transition can go smoothly, without interruption of care. This can reduce stress on the patient and family and improve the patient's health outcome.

See the following PDQ summaries for more information:

  • Adjustment to Cancer: Anxiety and Distress
  • Depression
  • Pain

Transitional care planning may include support and education for the patient and family and referral to resources. Ideally, it involves a team approach by the patient's health care providers. It is important that there be close communication between members of the team and that this communication include the patient and family.

Goals of cancer care may change as the disease changes.

Each type of cancer requires different care and the goals of a patient's treatment may change as his or her disease gets better or worse. Cancer care may include any of the following:

  • Active treatment: Treatment given to cure the cancer.
  • Supportive care: Care given to prevent or treat as early as possible the symptoms of the disease; side effects caused by treatment of the disease; and psychological, social, and spiritual problems related to the disease or its treatment.
  • Palliative therapy: Treatment given to relieve symptoms and improve the patient's quality of life. Palliative therapy may be given along with other cancer treatments or when treatment is no longer curative, to make the patient comfortable at the end of life.

Transitional care planning can help the patient and family with medical, practical, and emotional issues that arise as they adjust to these different levels and goals of care.

A patient may receive care in several different settings during the course of the illness.

Most of the care received by people with cancer is provided in places other than a hospital. The place where the patient receives treatment may change several times during the course of the illness. Patients may go from receiving care in a hospital or as an outpatient to receiving care at home, in a nursing home, at a rehabilitation center (a place for special training, such as help in regaining strength or movement), or from a hospice team for end-of-life care. When a patient moves from one place of care to another, the process of planning for the move is often called discharge planning. This may involve a case manager who acts on the patient's behalf when dealing with the hospital, visiting nurses, health care companies, rehabilitation facilities, nursing homes, and other groups that provide the care needed. The case manager is a link to resources and services in the community and can arrange for the provision of services, including patient and family education and referrals.

Transitional Care Planning Assessments

An assessment collects information that helps the health care team identify and manage problems a patient may have in adjusting to a change in care.

Having cancer affects more than the patient's physical condition. It also affects mental health, family life, ability to work, financial planning, social relationships, and faith. Many patients will encounter problems in one or more of these areas as they transfer from one level of care to another. For example, a patient's family may have problems obtaining special home equipment or learning to use special equipment. Another patient may have a difficult time accepting the change from anticancer care to symptom relief alone, such as that provided with some types of palliative or hospice care. Transitional care planning is unique to each patient and family. Assessments help identify patients who may have problems during the transition and help determine the kind of support they will need to make the change go smoothly. The assessments may include a complete medical history; a physical exam; a test of learning skills; tests to determine ability to perform activities of daily living; a mental health evaluation; a review of social support available to the patient; and referral to community resources as needed to assist with issues such as transportation, home care, healthy eating, and medication management.

Assessments are done many times during the patient's cancer experience, as a routine part of care.

Assessments are done when the patient moves from one facility to another, such as from hospital to home. They are also done at regular times during the course of the disease, usually at the time of diagnosis, after completing a course of treatment, when there is a relapse, when curative treatment stops, and when treatment is discontinued (end-of-life care begins). The patient may feel added emotional stress at these times. Regular assessments can identify these and other causes of distress in the patient, such as job loss or the death or illness of a patient's loved one or caretaker. (See the PDQ summary on Grief, Bereavement, and Coping With Loss for more information.)

Because no one knows what the patient's needs will be in the future, assessments are done many times during the cancer experience as a routine part of care. This is helps ensure the patient receives the right services at the right times.

All members of the patient's health care team are involved in the assessment process.

In planning for a change in cancer care, doctors, nurses, and other members of the patient's health care team will consider all the areas of a patient's life that may be affected. The following professionals may each conduct different parts of the transitional care planning assessment:

  • Doctor.
  • Nurse.
  • Dietitian.
  • Social worker.
  • Psychologist.
  • Chaplain.
  • Physical therapist.
  • Occupational therapist.

The following types of assessments will be done for transitional care planning:

Physical assessment

A physical assessment will look at the patient's general health, treatment plan, and changes in disease status, including the following factors:

  • Type and stage of the cancer.
  • Symptoms of the cancer.
  • Side effects of treatment.
  • Whether the patient smokes.
  • Nutrition -related side effects and complications.
  • Ability to perform activities of daily living.

See the following PDQ summaries for more information:

  • Nutrition in Cancer Care
  • Smoking in Cancer Care

Family and home assessment

Factors such as the patient's age and living arrangements may affect how easily a change in level of care can be accomplished. The assessment will look at the following:

  • Age of the patient and family members.
  • Living arrangements.
  • Whether the patient has a spouse or children.
  • Level of education of the patient and family.
  • Language spoken in the home.
  • Cultural beliefs and practices.
  • Whether family and friends are able to help during treatment.
  • The age and floor plan of the home. Will medical equipment (such as a hospital bed, oxygen tank, or portable monitor) fit in the bedroom, if needed, and is wiring adequate? Can a person in a wheelchair move through the house easily?

Mental health assessment

Change can be a stressful time for both the patient and family. The nature of the relationship between the patient and his or her family and others helps determine the kinds of services the family may need to cope with the transition. The following questions may be asked:

  • How do the patient and family feel about the cancer, the treatment, and the treatment goals? Sometimes patients develop serious problems such as depression or anxiety. Family members also may need help dealing with their feelings. These problems are often treatable. The doctor or health care professional can make referrals to a support group, counselor, or mental health care worker.
  • What beliefs and values are important to the patient and do they affect the patient's treatment decisions?
  • How has the family coped with stress and crisis in the past? This may be helpful in predicting how they will react to the stress caused by the changes in the patient's treatment.
  • Are there problems in the home that are unrelated to the cancer but may affect how well the patient and family can handle the change?
  • Are there current or past mental health problems in the family?
  • Has there been physical or sexual abuse in the patient's past?
  • In the case of a patient considering home care, does the patient or any family member smoke or use drugs or alcohol? Smoking is not safe around oxygen equipment. Family members responsible for giving the patient medicines or other care must be clear-headed and not under the influence of any substance that could affect their ability to provide care in the prescribed way.

See the following PDQ summaries for more information:

  • Cognitive Disorders and Delirium
  • Depression
  • Adjustment to Cancer: Anxiety and Distress
  • Post-traumatic Stress Disorder

Social assessment

Doctors and other health care professionals can provide referrals to supportive services available to the patient. A review of the kinds of social services already available to the patient will be done:

  • What kind of support is available in the home and community? How will the patient travel to medical appointments or other places? Who can the patient call on for help if necessary? Where the patient lives may affect what services are available and how the patient can get to appointments. Referrals can be made to local providers of services such as home nursing, food and medication delivery, and transportation to and from treatment centers.
  • Does the patient understand hospice care and palliative care and know about available programs in the community? (See the PDQ summary on Last Days of Life for more information.)
  • Before home care is considered, the availability of in-home help must be determined. Is there someone at home who can help the patient or will outside help be needed?
  • Will the primary caregiver have anyone to help with the caregiving duties and make it possible to take time off?
  • How will the change affect the patient's ability to work?
  • Does the patient have insurance coverage (group coverage from a job, Medicare, Medicaid, veteran's benefits, or other)?
  • What are the patient's financial resources? How will the cost of care be paid?

Spiritual assessment

Knowing the role that religion and spirituality play in the patient's life help the health care team understand how these beliefs may affect the patient's transition to a new level of care. A spiritual assessment may include the following questions:

  • Does the patient consider himself or herself to be a spiritual person?
  • What is the importance of religion to the patient?
  • Is the cancer or its treatment causing spiritual distress?
  • Is support available from the patient's religious group? Many patients find visits from members of their religious group valuable. A patient may want to talk to a spiritual advisor (for example, a priest, rabbi, or minister) during treatment.

Most hospitals, especially larger ones, employ hospital chaplains who are trained to work with medical patients and their families. Hospital chaplains are trained to be sensitive to a range of religious and spiritual beliefs and concerns.

(See the PDQ summary on Spirituality in Cancer Care for more information.)

Legal assessment

Advance directives and other legal documents can help doctors and family members make decisions about treatment should the patient become unable to communicate his or her wishes. The patient may be asked if he or she has prepared any of the following documents:

  • Advance directive: A general term for different types of documents that state what an individual's wishes are concerning certain medical treatments when the patient can no longer communicate those wishes. The patient may declare the wish to be given all possible treatments that are medically appropriate, only some treatments, or no treatment at all. Advance directives are most effective when the patient and doctor talk about the decisions made by the patient and make plans to ensure the directives are followed.
  • Health care proxy (HCP): A document in which the patient identifies a person (called a proxy) to make medical decisions if the patient becomes unable to do so. The form may not need to be notarized, but it must be witnessed by two other people. The patient does not have to state specific decisions about individual treatments, only that the proxy may make medical decisions for him or her. HCP is also known as durable power of attorney for health care (DPOAHC) or medical power of attorney (MPOA).
  • Living will: A living will is a legal document in which a person states that they want certain life-saving medical treatments to be either withheld or withdrawn under certain circumstances. A living will is a type of advance directive. Living wills are not legal in all states.
  • Durable power of attorney: A document in which the patient names another person to make legal decisions for him or her.
  • Do Not Resuscitate (DNR) order: A document in which the patient instructs doctors not to perform cardiopulmonary resuscitation (restart the heart) at the moment of death, so that the natural process of dying occurs. A DNR order may be medically appropriate when cardiopulmonary resuscitation is not likely to save the patient's life.

Transitional Care Options

Different types of care are available for different types of needs. Transitional care may include management of the patient's medical condition and rehabilitation, plus supportive services to ensure basic needs such as comfort, hygiene, safety, and nutrition. It may also include supportive services for educational, social, spiritual, and financial needs. The following is a list of some of the care options that meet the assessed needs of patients during transition:

Place of care

  • Hospital.
  • Nursing home.
  • Rehabilitation unit or facility.
  • Patient's home.
  • Home of family caregiver.
  • Hospice.
    • May be in an inpatient setting specified by the hospice or in the patient's home.
    (See the PDQ summary on Last Days of Life for more information.)

Caregivers

Health care specialists and other caregivers work as a team, providing services to patients in their homes, clinics, and other settings. These may include the following:

  • Doctor.
  • Nurse.
  • Dietitian.
  • Physical therapist.
  • Occupational therapist.
  • Social worker.
  • Mental health professional.
  • Clergy or other religious leader.
  • Companions.
  • Home care aides.

Programs that provide care may include the following:

  • Bereavement programs.
  • Community support groups.
  • Employment counseling agencies.
  • Home health agencies.
  • Home infusion agencies.
  • Hospice programs.
  • Legal aid organizations.
  • Palliative care programs.

Medication support

  • Pain and symptom management. (See the PDQ summary on Pain for more information.)
  • Chemotherapy.
  • Blood transfusions.
  • Medications that cause blood cells to grow and mature.
  • Antibiotics (drugs used to treat infections).
  • Treatments that help improve or restore lung function.
  • Wound and skin care.

Nutrition support

The patient may be able to eat normally or may need supplemental nutrition by mouth, by tubefeeding, or by delivery into a vein. (See the PDQ summary on Nutrition in Cancer Care for more information.)

Special equipment

The type of equipment needed, if any, will depend on the patient's condition. Some commonly needed devices include the following:

  • Medical appliances (such as catheters, tubes for drainage, and bags for colostomies).
  • Assistive devices (wheelchairs, walkers, special beds and mattresses).
  • Pumps to deliver medication into the body.
  • Respirators (machines that help the patient breathe).

Special Considerations

Caring for a patient at home can increase the physical and emotional burdens on the patient's caregivers.

The stress and responsibility of in-home care can be hard on family relationships and should be carefully considered. Day-to-day routines may change for everyone. Many families have trouble getting used to the role changes that result. Patients and families may be referred to counseling to help them with these issues.

Pain control is a key factor in successful home care. Pain medications are given to help patients feel better and are often a part of cancer care. Controlling the patient's symptoms, especially pain, can make things easier on both the patient and the caregivers. It is important that the family and caregivers understand the use of pain control medications and other treatments that keep the patient comfortable.

See the following PDQ summaries for more information:

  • Cardiopulmonary Syndromes
  • Fatigue
  • Fever, Sweats, and Hot Flashes
  • Gastrointestinal Complications
  • Nausea and Vomiting
  • Pain

If home care is to be considered, the following factors and others will be assessed:

  • The kind of care to be given.
  • The decision-making skills required by the patient and caregiver.
  • Whether equipment needed will fit in the home.
  • The family's ability and desire to provide the care, alone or with the aid of home care workers.

This assessment will help determine if care at home is a workable option for the patient.

Transitional care planning will help the patient explore ways to pay for services and care needed.

Medical insurance, Medicare, veteran's benefits, and/or Medicaid may pay some of a patient's medical expenses. These have limits to their coverage, however, and patients may need to find other ways to pay for costs not covered. The costs of home care, for example, are usually covered only under certain conditions and for a limited time.

Transitional care planning will include referrals to community resources that can help the patient plan for treatment costs not met by insurance. Social service agencies may be available to help with certain care needs. Some organizations lend medical equipment (such as wheelchairs and hospital beds), provide short-term assistance with a nursing aid or housekeeper, or provide transportation to and from the doctor's office or clinic.

For more information about financial resources, contact the National Cancer Information Service (CIS) at 1-800-4-CANCER. The CIS offices have information about cancer-related services and resources that are available in different parts of the country.

Transitional care may include employment counseling for the patient.

People with cancer often want to get back to work. Their jobs give them not only an income but also a sense of routine. Some people feel well enough to work while they are having treatment. Others need to wait until their treatments are over. Patients who have disabilities or other special needs after treatment may not be able to return to their old jobs at all.

Referrals can be made to services that help the patient with job-related issues. These services may include employment counseling, education and skills training, and help in obtaining and using assistive technology and tools.

If a patient does return to work, coworkers may not know what to say or may not know if the patient wants to talk about the cancer. Education of the patient's coworkers about the cancer can help ease this transition.

Advance directives need to move with the patient.

During transitions in care, the patient's advance directives, health care proxy form, and durable power of attorney document need to be given to the appropriate caregivers. This step will ensure that the patient's wishes are known through all disease stages and places of care. (See the Legal Assessment section for information about these forms.)

End-of-Life Decisions

Caring for a person with cancer starts after symptoms begin and the diagnosis is made and continues until the patient is in remission, is cured, or has died. (See the PDQ summaries on Last Days of Life and Grief, Bereavement, and Coping With Loss for more information.) End-of-life decisions should be made soon after the diagnosis, before there is a need for them. These issues are not pleasant or easy to think about, but planning for them can help relieve the burden on family members to make major decisions for the patient at a time when they are likely to be emotionally upset.

A patient's views may reflect his or her philosophical, moral, religious, or spiritual background. If a person has certain feelings about end-of-life issues, these feelings should be made known so that they can be carried out. Since these are sensitive issues, they are often not discussed by patients, families, or doctors. People often feel that there will be plenty of time to talk later about the issues. Many times, though, when the end-of-life decisions are necessary, they must be made by people who do not know the patient's wishes. A patient should talk with the doctor and other caregivers about resuscitation decisions as early as possible (for example, when being admitted to the hospital); he or she may not be able to make these decisions later. Advance directives can ensure the patient's wishes are known ahead of time. (See the Legal Assessment section for information about these forms.)

These issues are important to discuss whether a patient is being cared for at home; in a hospital, nursing home, or hospice; or elsewhere.

Changes to This Summary (10 / 23 / 2012)

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.

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PDQ is the National Cancer Institute's (NCI's) comprehensive cancer information database. Most of the information contained in PDQ is available online at NCI's Web site. PDQ is provided as a service of the NCI. The NCI is part of the National Institutes of Health, the federal government's focal point for biomedical research.

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Last Revised: 2012-10-23


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