The Common Sense Guide to Improving Palliative Care > Caring for Caregivers > 6.4 Barriers to Improved Caregiver Support

Caring for Caregivers: Barriers to Improved Caregiver Support

Virtually all improvement efforts encounter barriers. Anticipating and preparing for them will allow your team to overcome problems while staying focused on your aim. Institutional barriers that most teams face related to caregiver support include the following:

Fear of getting involved in what may seem to be the limitless needs of families.
Lack of familiarity with the everyday demands of caregiving.
Lack of reliable resources to support caregivers.

Below is a list of the challenges that family caregivers often face.

Information and Communication: A general lack of accurate, understandable, and timely information and communication between patients, families, and healthcare providers about the patient's illness and prognosis, treatment options, and what to expect next; a lack of availability of clinicians when families have questions; and poor communication among clinical providers within and across settings.
Advance Care Planning (ACP): Dying patients often end up getting inappropriate and undesired aggressive treatment because there is no other plan; because completed plans are not on record or no one is responsible for having them completed; because there is little standardization across settings as to what should be included in the ACP or ACP discussions; because facilities emphasize legal forms rather than more comprehensive care planning; and because providers are reluctant to bring up ACP because they do not feel confident that they will know what to say or how to respond (see Chapter 3, Advance Care Planning, for more details).
Continuity of Care: There are often a lack of "common" or uniform plans of care across settings; a lack of communication among providers of vital elements of the care plan, including a list of problems, baseline physical, cognitive, and functional status, current medications and allergies, and caregiver contact information; a lack of preparation for the goals of care in the next setting; a lack of explicit arrangements for follow-up appointments, laboratory testing, and reconciliation of medication regimens; a lack of timely and appropriate follow-up from one setting to another to ensure that the care plan is properly and fully executed; a lack of preparation of the patient and caregiver for transitions, including problems with the transportation of the patient; and a lack of formal training in continuity/transitional care as a core competency for clinicians caring for elders who are frail and have advanced illness (see Chapter 7, "Continuity and Transfers," for more details).
Emotional, Psychosocial, Spiritual Support: Clinicians often fail to refer caregivers to individual and group counseling and support services that include other caregivers in similar situations to address the emotional and psychological issues of caregivers.
Education/Training for Patient Management: There may also be a lack of individualized and multicomponent education, information, and training and follow-up programs to enhance problem-solving/coping skills, meet patient medical needs, and assist the caregiver in patient behavior management (see Chapter 5 on CHF/COPD care and Chapter 10 on dementia care for more details of patient and caregiver support in the community).
Access to Support Services: Clinicians may not refer caregivers to community resources for caregiver support services, such as respite services, financial counseling or assistance, and other social and health services needed by the family.
End-of-Life Care/Palliative Care/Supportive Care: Caregivers often do not know about palliative or comfort care support services for the patient and supportive care services for the caregiver during the end of the loved one's life.
Follow-Up Bereavement Support: Caregivers often do not have follow-up, bereavement referral/counseling, and psychosocial/spiritual support (see Chapter 14 on bereavement support for more details).