Patients want information and consultations improve care.
Studies confirm that open communication decreases suffering and lessens anxiety and depression. Research shows that terminal patients who have an end-of-life discussion with their physician are more likely to receive effective comfort care and are less likely to die in an intensive care unit.
“As an organization working with the dying for 28 years, we know that information and counseling regarding end-of-life care are essential to the comfort and peace of many terminally ill patients and their families,” Barbara Coombs Lee, president of Compassion & Choices. “These poignant conversations help patients weigh all options and make an informed decision that reflects their values and beliefs. It gives the physician an opportunity for a heartfelt discussion of the benefits and risks of all available treatments, and it can facilitate earlier access to hospice care.”
CONSULTATIONS IMPROVE CARE
End-of-life discussions decrease suffering and distress for patients and loved ones
“End-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient quality of life and worse bereavement adjustment.
The worst outcomes were seen in patients who did not report having these conversations.
Given the adverse outcomes associated with not having end-of-life discussions, there appears to be a need to increase the frequency of these conversations. By acknowledging that death is near, patients, caregivers, and physicians can focus on clarifying patients’ priorities and improving pain and symptom management.”
Hospice patients live longer
“This study provides important information to dispel the myth that hospice hastens death and suggests that hospice is related with the longer length of survival by days or months in certain terminally ill patients. This extra time might be particularly important to patients and their families, as it may allow some people to use the end of life as a time of resolution and closure.”
Inability to participate in treatment decisions can cause patients uncertainty and distress
“Complying (to the physician’s treatment recommendations) without participation was characterized by participants’ feelings of uncertainty and distress, and of being rushed into submitting to decisions without having time to reflect on the information provided or the opportunity to influence the treatment and care process. To participate (or choosing not to participate) builds on open and affirming dialogue, information and knowledge about the illness. Patient participation in treatment and care decision making is interpreted as a health promoting way of coping with illness.”
PATIENTS WANT INFORMATION
87% of patients say they “want as much information as possible”
In a study of 2,331 patients with cancer, 87% report they want as much information as possible regarding their diagnosis and prognosis, even if it isn’t good. The study authors note that: “patients need to plan and make decisions about the place of their death, put their affairs in order, say good-byes or forgive old adversaries and be protected from embarking on futile therapies.”
Patients want doctors to communicate with them about their treatment options
“Participants stated that fear of pain and inadequate symptom management could be reduced through communication and clear decision making with physicians. Patients felt empowered by participating in treatment decisions.”
NEED FOR GREATER PHYSICIAN PARTICIPATION
End-of-life discussion only taking place about half the time
“Many patients diagnosed as having metastatic lung cancer had not discussed hospice with a provider within 4 to 7 months after diagnosis. Increased communication with physicians could address patients’ lack of awareness about hospice and misunderstandings about prognosis.”