By Craig Chamberlain
Hospice patients with terminal illness need counseling as much as medical care, a UI professor says, and they rely on social workers and clergy, much more than nurses, in working through their most pressing end-of-life concerns.
How patients deal with those concerns can play a major factor in how they plan for death and even the amount of their final medical bill, according to Dona Reese, a professor of social work and former hospice social worker. Yet current cost-cutting trends in health care, which threaten hospices, could make counselors and counseling much less available, she said.
In research scheduled to be published this summer in The Hospice Journal, Reese sought to document what issues hospice patients most often discuss, and whom among the hospice team the patients talk with. She drew her information from routine records filed by nurses, social workers and clergy in a Peoria, Ill., hospice, in which they noted what issues they discussed with patients on their most recent home visits. The study covered 35 patients and 105 home visits.
Of the top 10 issues discussed by patients, four related to what Reese defines broadly as spirituality. "Relationship with God" came up more than any other issue -- in 37 out of 105 visits. The other three concerns were "unfinished business," the meaning of life and the meaning of suffering.
Five of the other six issues related to death anxiety, with patients most often discussing worries about losing control of their mind, about leaving loved ones behind and about dying a painful death. Those three issues ranked second through fourth among those most discussed, and each came up in more than 20 of the home visits.
All three professionals discussed most of these issues at some point, Reese said. Hospice staffers "talk about whatever the patient wants to talk about -- the patient's the boss." But spiritual concerns came up more than any others, and were discussed most frequently with the clergy member. Concerns related to death anxiety were the second most-discussed, and most frequently with the social worker.
In two years working in a hospice program, Reese said she saw how important it was to have counselors available to deal with spiritual and psychological issues. She saw patients die in peace and others crying out in distress. She also saw patients and families who accepted the inevitable, and others who did not, sometimes running up large medical bills in futile, final efforts to extend life.
One line of thought developing in health care, Reese said, is "why pay a social worker in addition to the nurse? -- just have the nurse do it all." But that is short-sighted thinking, especially in a hospice, based on both her research and practical concerns, she said. Hospice nurses often have little formal training in counseling. "They also don't have time to do all the medical care and then sit and do all the counseling as well," she said.