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Table 2. Components of individualized EOL care 2

Component

Rationale

Frequent assessment of the patient’s physical, emotional, social, and spiritual well-being Management of emotional distress Offer referral to expert-level palliative care Offer referral to hospice if the patient has a prognosis < 6 months. Management of care and direct contact with patient and family for complex situations by a specialist level palliative care physician Round-the-clock access to coordinated care and services

Interventions and care should be based on accurately identified needs.

All clinicians should be able to identify distress and direct its initial and basic management. This is part of the definition of palliative care, a basic component of hospice, and clearly of fundamental importance. People with palliative needs beyond those that can be provided by non-specialist-level clinicians deserve access to appropriate expert-level care. People who meet the hospice eligibility criteria deserve access to services designed to meet their end-of-life needs. Care of people with serious illness may require specialist-level palliative care physician management, and effective physician management requires direct examination, contact, and communication.

Patients in advanced stages of serious illness often require assistance, such as with activities of daily living, medication management, wound care, physical comfort, and psychosocial needs. Round-the-clock access to a consistent point of contact that can coordinate care obviates the need to dial 911 and engage emergency medical services. Management of pain and other symptoms All clinicians should be able to identify and direct the initial and basic management of pain and other symptoms. This is part of the definition of palliative care, a basic component of hospice, and clearly of fundamental importance. Counseling of patient and family Even patients who are not emotionally distressed face problems in such areas as loss of functioning, prognosis, coping with diverse symptoms, finances, and family dynamics, and family members experience these problems as well, both directly and indirectly.

Family caregiver support

A focus on the family is part of the definition of palliative care; family members and caregivers both participate in the patient’s care and require assistance themselves. Person-centered care requires awareness of patients’ perspectives on their social environment and of their needs for social support, including at the time of death. Companionship at the bedside at time of death may be an important part of the psychological, social, and spiritual aspects of end-of-life care for some individuals. The final phase of life often has a spiritual and religious component, and research shows that spiritual assistance is associated with quality of care. Care must be person-centered and fit current circumstances, which may mean that not all the above components will be important or desirable in all cases.

Attention to the patient’s social context and social needs

Attention to the patient’s spiritual and religious needs Regular personalized revision of the care plan and access to services based on the changing needs of the patient and family

Culturally Sensitive Communication Communicating effectively with both patients and their loved ones requires an awareness of some of the cultural differences that can create unexpected barriers or misunderstandings. End- of-life discussions are particularly challenging because of their emotional and interpersonal intensity. Many physicians are unfamiliar with common cultural variations regarding physician- patient communication, medical decision making, and attitudes about formal documents such as code status guidelines and advance directives. 25 Although cultural differences certainly exist, generalizations about specific cultures are not always applicable to specific patients because there is wide variation in the ways that individuals adhere or adopt the stereotypical beliefs, values, or attitudes of a particular culture. In fact, research suggests that when compared with whites of European descent, ethnic minorities exhibit greater variability in their cultural beliefs and preferences. 26 Clinicians should be aware that different cultures may place different emphasis—or disagree completely—with principles of medical conduct that

they take for granted. For example, in the United States, legal documents such as advance directives and durable powers of attorney are strategies to prolong autonomy in situations in which patients can no longer represent themselves. Other cultures, however, de-emphasize autonomy, perceiving it as isolating rather than empowering. These non- Western cultures believe that communities and families, not individuals alone, are affected by life- threatening illnesses and the accompanying medical decisions. 27 Cultures valuing non-malfeasance (doing no harm) may try to protect patients from the emotional and physical harm caused by directly addressing death and end-of-life care. Many Asian and Native American cultures value beneficence (physicians’ obligation to promote patient welfare) by encouraging patient hope, even in the face of terminal illness. Patient or family member preferences for nondisclosure of medical information and family-centered decision making may also be surprising to American-trained physicians.

Physicians may improve their rapport with ethnically diverse patients simply by showing interest in their cultural heritage, and more importantly, in each individual’s respective approach to both suboptimal news, and approach to death and dying. Here are some example questions and situations that reflect a culturally sensitive approach to patient interactions: 25 “Some people want to know everything about their medical condition, and others do not. What is your preference?” “Do you prefer to make medical decisions about future tests or treatments for yourself, or would you prefer that someone else make them for you?” To patients who request that the physician discuss their condition with family members: “Would you be more comfortable if I spoke with your (brother, son, daughter) alone, or would you like to be present?” If the patient chooses not to be present: “If you change your mind at any point and would like more information, please let me know. I will answer any questions you have.

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