1. Caring for the Dying 2007 Psyc 456 Dusana Rybarova

2. Compassion and empathy as basic human qualities We are biologically programmed to be cooperative, supportive, and altruistic We are biologically programmed to be cooperative, supportive, and altruistic In the right environment empathy, compassion, and caring behavior will unfold naturally and both the caregiver and the care-recipient will grow and thrive from their participation in it (Larson, 1993) In the right environment empathy, compassion, and caring behavior will unfold naturally and both the caregiver and the care-recipient will grow and thrive from their participation in it (Larson, 1993) Harsh and unloving childhood can inhibit the full expression of these tender, human qualities, but compassion and caregiving are part of our biological inheritance Harsh and unloving childhood can inhibit the full expression of these tender, human qualities, but compassion and caregiving are part of our biological inheritance

3. The Development of Altruism and Caregiving Newborns react by crying to distress of others in their presence Newborns react by crying to distress of others in their presence Children 1 ½ to 2 years old attempt to comfort a distressed person by patting, hugging, or presenting an object Children 1 ½ to 2 years old attempt to comfort a distressed person by patting, hugging, or presenting an object Role-taking ability developing around 2-3 years of age Role-taking ability developing around 2-3 years of age Later we are able to empathize beyond our immediate situation, beyond individuals (compassion for groups of people such bereaved parents, victims of an attack etc.) Later we are able to empathize beyond our immediate situation, beyond individuals (compassion for groups of people such bereaved parents, victims of an attack etc.) 50% of Americans report performing some kind of volunteer work during the past year 50% of Americans report performing some kind of volunteer work during the past year Later gestures of caregiving Later gestures of caregiving –Suggestions about how to solve problems –Trying to cheer others up –Alternative helping responses to reduce suffering in others

4. Caregiving behavior: Biological and social roots Animals demonstrate almost universal tendency towards cooperation and altruism and tend to become aroused in the presence of a distressed member of their species Animals demonstrate almost universal tendency towards cooperation and altruism and tend to become aroused in the presence of a distressed member of their species Caring for injured, incapacitated members of group in chimpanzees and monkeys Caring for injured, incapacitated members of group in chimpanzees and monkeys Survival value of altruism and caring essential for human species that is not physically superior to other species Survival value of altruism and caring essential for human species that is not physically superior to other species –Reciprocal altruism –Non-reciprocal altruism Support of compassionate and altruistic tendencies through social learning Support of compassionate and altruistic tendencies through social learning –Seeing reactions of others to caring acts and learning that responding with empathy and compassion is both rewarded and rewarding

5. Caregivers Fears –Caregiving can reveal a vulnerable, more fearful side of our nature –We may face a mixture of compassion, anxiety, and fear –How to relate to a dying person at other than superficial level –Social barriers – expression of grief connected to the death of a patient is often considered unprofessional, associated with feelings of inadequacy and incompetence

6. Caregivers Fears Fear of our own death Fear of our own death –Experience of caring for a dying person can arouse our own fear of mortality without a conscious experience of it –It can lead to detachment from the person we are caring for –Important facing the issues and developing strategies of coping Fear of hurting the person we are helping Fear of hurting the person we are helping –Often combined with time pressure, the urge to be perfect, often the necessity to make decision based on vague or incomplete information –Powerful emotional consequences of mistakes for a caregiver

7. … Caregivers Fears Fear of Being Hurt Fear of Being Hurt –Fear of being the target of others’ anger –Fear of being hurt when our patient or a loved one finally dies –Repressed and unacknowledged feelings over long periods of time can generate ongoing stress and activate grief and fear from other parts of the caregiver’s life –Can result in depersonalized and dehumanized care –The fear and grief needs to be confronted and worked through Fear of Being Engulfed Fear of Being Engulfed –Being immersed in the grief and stress of the dying, feeling used and defensive –The risks of either being overwhelmed by emphatic feelings for the dying, or slipping into depersonalized and dehumanized attitude

8. Dying in a Hospital 40% of patients spent 10 days in coma isolated from family 40% of patients spent 10 days in coma isolated from family Living wills stating that the patient should not be artificially resuscitated were not respected in half of the cases Living wills stating that the patient should not be artificially resuscitated were not respected in half of the cases 1/3 of patients spent most or all of their life savings for unsought, unrequested, and vain efforts to postpone inevitable death 1/3 of patients spent most or all of their life savings for unsought, unrequested, and vain efforts to postpone inevitable death Nurse-advocates did not have any effect on the treatment of the patients Nurse-advocates did not have any effect on the treatment of the patients

9. The Physician High priest in American society High priest in American society Physicians commit suicide at three times the rate of the population at large Physicians commit suicide at three times the rate of the population at large 79% reported that their care decisions were influenced by financial issues 79% reported that their care decisions were influenced by financial issues Physicians are highly death avoidant, have inordinately high fear of death Physicians are highly death avoidant, have inordinately high fear of death Medical education leads to desensitization and dehumanizing attitudes Medical education leads to desensitization and dehumanizing attitudes Have limited understanding of the social, psychological, spiritual, and comfort needs Have limited understanding of the social, psychological, spiritual, and comfort needs Avoidance of dying patients Avoidance of dying patients Caregivers grief is both unrecognized and expected to be so Caregivers grief is both unrecognized and expected to be so

10. Social Death and Depersonalization Social death Social death –Patients treated by medical personnel they don’t know, isolated from their family and friends I.C.U. psychosis I.C.U. psychosis –Severe disorientation of patients reacting to windowless, mechanical environment Depersonalization Depersonalization –Dying in a strange, and sterile environment, isolated from spiritual nourishment, and loving support The conspiracy of silence The conspiracy of silence –74% of doctors avoids talking to patients about their terminal illness –About 80% of patients wants to know that they are dying –Closed awareness, suspicious awareness, mutual pretense

11. Genuine and compassionate care Education Education –Information about psychological aspects of death and care options of the dying Learning and applying coping strategies Learning and applying coping strategies –Prevention of cognitive denial, emotional repression and behavioral passivity –Relaxation techniques, meditation, writing as a coping strategy, seeking advice, talking to colleagues, spiritual advisors and counselors Communication training Communication training –Attending workshops about effective communication with the dying –Seeking information about how to communicate about death

12. The Hospice Alternative Hospice refers to a comprehensive philosophy of compassionate care for the terminally ill Hospice refers to a comprehensive philosophy of compassionate care for the terminally ill Hospice care is mutlifocused and includes coping with the psychosocial, spiritual, and economic issues as well as medical problems Hospice care is mutlifocused and includes coping with the psychosocial, spiritual, and economic issues as well as medical problems It is comfort-centered rather than cure-centered It is comfort-centered rather than cure-centered Interdisciplinary team includes the nurse coordinator, the home health aide, the grief counselor, volunteers, specialized therapists, nutritionist, hospice physician, clergy Interdisciplinary team includes the nurse coordinator, the home health aide, the grief counselor, volunteers, specialized therapists, nutritionist, hospice physician, clergy

13. The Hospice Alternative 2,500 hospice programs in the USA 2,500 hospice programs in the USA Three types of hospice care Three types of hospice care –A house where people go for visits and counseling –A separate ward or palliative care unit of a hospital, where patients are cared for by an interdisciplinary hospice team –Home care service with the goal of allowing patients to remain in their home environment as long as desired as possible (predominant in the USA)