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Family Caregivers in Cancer: Roles and Challenges (PDQ®)

Physicians Interacting With Family Caregivers

Patients and caregivers may present with different needs, making it difficult to decide whose needs take priority.[1] This situation is especially common when it comes to truth-telling, with family members asking the health care team to keep bad news a secret from the cancer patient, or vice versa.

Communication With Caregivers

Cultural differences can profoundly affect communication with the patient and family. For example, some Asian Americans believe that talking about death or dying is bad luck.[2] Such differences complicate discussions about prognosis, treatment choices, and even the use of terms such as chemotherapy, radiation, and hospice.[3] Keeping a life-threatening diagnosis a secret from the patient and avoiding discussions of disease progression further add to a caregiver’s sense of burden, isolation, and responsibility. A cross-sectional study was conducted in Taiwan to determine the frequency and difficulty of decisions encountered by bereaved caregivers of terminally ill patients who had died in one university hospital.[4] In Asian cultures, it is not uncommon for health care providers to refrain from telling the complete truth to patients, especially in the case of terminal disease, with the responsibility often left to family caregivers. In this study, truth-telling was the most common difficult decision experienced by family caregivers. Health care providers should be aware of such cultural differences from the Western notion of truth-telling to provide culturally competent care to such patients.

Breaking Bad News

Delivering bad news to patients and caregivers is an essential skill for oncologists, palliative care physicians, and other members of the health care team. To do this well, the physician should:[5]

  • Become comfortable with end-of-life issues.
  • Understand the range of options available for families.
  • Let caregivers know what can, rather than what cannot, be done for the patient.
  • Share and receive information in a compassionate manner.

Oncotalk is a teaching program designed to improve communication skills for postgraduate medical trainees.[6] The program covers essential communication skills such as the "Ask-Tell-Ask" principle and the "Tell me more" principle, and communication tasks are linked to the illness trajectory:[7]

  • The first visit.
  • Making anticancer treatment decisions.
  • Offering clinical trials.
  • Completing anticancer therapy.
  • Discontinuing palliative chemotherapy.

Responding to Difficult Situations

Family caregivers may believe that their concerns are inevitable and their needs cannot be met.[8] In an ideal setting, the social worker or psychologist should be present at meetings with family caregivers to assist with follow-up and support.

Just as a patient’s family can appoint a spokesperson, the oncology team can designate a family liaison. However, most family caregivers prefer direct access to the treating oncologist; in fact, active listening by physicians may reduce caregiver burden. One study found that caregivers experienced less burden and distress if they felt that the treating physician listened to their needs and opinions.[8] The oncology team should maintain frequent communication to ensure that messages and other information delivered to the family are consistent and that treatment goals are clear to all concerned.

Responding to Family Conflict

Some families may have less-than-optimal internal relationships, which may lead to communication difficulties within the family and with health care professionals. Many families are not happy, tight-knit units, and the stress of caring for a relative with cancer can reignite unresolved conflicts or create new conflicts.[9] It may be beyond the scope of the oncology team to resolve long-standing family conflict. Use of the family meeting and one family-appointed spokesperson as a communication liaison with the oncology team can help to ameliorate some of these difficulties.

Appointing a Family Spokesperson

Oncology clinicians can be frustrated by having to provide the same information to family caregivers repeatedly. A caregiver’s ability to absorb and retain information may be compromised by depression, fear, anxiety, and sleep deprivation.[10] It is advisable for clinicians to request that the family appoint a spokesperson through whom information can be delivered. In addition, the oncology team should try to promote an environment that is conducive to information exchange (i.e., a quiet, private place with minimal interruptions).[11] To ensure that caregivers have heard and understood the information, they should be prompted to ask questions and should be provided with written backup notes, user-friendly articles, or a list of Web sites for later reference.

Convening a Family Meeting

The family meeting is a valuable clinical tool for communicating medical information, delineating the goals of care, and facilitating decision making in cancer treatment. Outcome studies validating the effectiveness of the family meeting are beginning to emerge, especially from the intensive care unit literature. The family meeting is an ideal forum for:

  • Eliciting caregiver concerns.
  • Providing clear information about treatment.
  • Facilitating end-of-life care decisions.
  • Deciding to avoid inappropriate treatment options.

In addition, caregivers can receive reassurance that symptoms will be adequately managed and patient preferences will be respected.[12]

Successful family meetings promote a safe setting in which caregivers can process emotions and have their concerns validated. Family meetings are most effective when:[11,13]

  • The agenda is transparent to patients, families, and professional staff.
  • There is a clearly designated staff person in the role of leader.
  • Family caregivers are given the opportunity to ask questions, express concerns, and confront painful emotions with the help of trained and compassionate professionals.

(Refer to the PDQ summary on Communication in Cancer Care for more information about communication among clinicians, patients, and families.)

Dealing With Psychological Issues

Patients facing the end of life face enormous physical and existential challenges. Enhanced understanding of the common psychological concerns of patients with serious illness and their caregivers can improve not only clinical care but also the physician's sense of satisfaction and meaning in caring for the dying patient.[14] Physicians also must be attentive to their own needs, which may include feelings of grief and loss, compassion fatigue, and a sense of detachment. In addition to caring for the patient and family, oncologists are advised to pursue healthy venues that promote adaptive coping.[15]

References

  1. Hudson PL, Aranda S, Kristjanson LJ: Meeting the supportive needs of family caregivers in palliative care: challenges for health professionals. J Palliat Med 7 (1): 19-25, 2004. [PUBMED Abstract]
  2. Ngo-Metzger Q, McCarthy EP, Burns RB, et al.: Older Asian Americans and Pacific Islanders dying of cancer use hospice less frequently than older white patients. Am J Med 115 (1): 47-53, 2003. [PUBMED Abstract]
  3. Pinquart M, Sörensen S: Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: a meta-analysis. Gerontologist 45 (1): 90-106, 2005. [PUBMED Abstract]
  4. Huang HL, Chiu TY, Lee LT, et al.: Family experience with difficult decisions in end-of-life care. Psychooncology 21 (7): 785-91, 2012. [PUBMED Abstract]
  5. Arnold RL, Egan K: Breaking the "bad" news to patients and families: preparing to have the conversation about end-of-life and hospice care. Am J Geriatr Cardiol 13 (6): 307-12, 2004 Nov-Dec. [PUBMED Abstract]
  6. Back AL, Arnold RM, Baile WF, et al.: Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Arch Intern Med 167 (5): 453-60, 2007. [PUBMED Abstract]
  7. Back AL, Arnold RM, Baile WF, et al.: Approaching difficult communication tasks in oncology. CA Cancer J Clin 55 (3): 164-77, 2005 May-Jun. [PUBMED Abstract]
  8. Emanuel EJ, Fairclough DL, Slutsman J, et al.: Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients. N Engl J Med 341 (13): 956-63, 1999. [PUBMED Abstract]
  9. Harris KA: The informational needs of patients with cancer and their families. Cancer Pract 6 (1): 39-46, 1998 Jan-Feb. [PUBMED Abstract]
  10. Radwany S, Albanese T, Clough L, et al.: End-of-life decision making and emotional burden: placing family meetings in context. Am J Hosp Palliat Care 26 (5): 376-83, 2009 Oct-Nov. [PUBMED Abstract]
  11. Gueguen JA, Bylund CL, Brown RF, et al.: Conducting family meetings in palliative care: themes, techniques, and preliminary evaluation of a communication skills module. Palliat Support Care 7 (2): 171-9, 2009. [PUBMED Abstract]
  12. Boyle DK, Miller PA, Forbes-Thompson SA: Communication and end-of-life care in the intensive care unit: patient, family, and clinician outcomes. Crit Care Nurs Q 28 (4): 302-16, 2005 Oct-Dec. [PUBMED Abstract]
  13. Azoulay E: The end-of-life family conference: communication empowers. Am J Respir Crit Care Med 171 (8): 803-4, 2005. [PUBMED Abstract]
  14. Block SD: Perspectives on care at the close of life. Psychological considerations, growth, and transcendence at the end of life: the art of the possible. JAMA 285 (22): 2898-905, 2001. [PUBMED Abstract]
  15. Kutner JS, Kilbourn KM: Bereavement: addressing challenges faced by advanced cancer patients, their caregivers, and their physicians. Prim Care 36 (4): 825-44, 2009. [PUBMED Abstract]
  • Updated: February 21, 2014