It's Time to Have the Talk
Abstract & Commentary
By Allan J. Wilke, MD, Residency Program Director, Associate Professor of Family Medicine, University of Alabama at Birmingham School of Medicine - Huntsville Regional Medical Campus, Huntsville. Dr. Wilke reports no financial relationship to this field of study. This article originally appeared in the November 29, 2008 issue of Internal Medicine Alert. It was edited by Stephen Brunton, MD, and peer reviewed by Gerald Roberts, MD. Dr. Brunton is Clinical Professor, University of California, Irvine, and Dr. Roberts is Clinical Professor of Medicine, Albert Einstein College of Medicine. Dr. Brunton is a consultant for Sanofi-Aventis, Ortho-McNeil, McNeil, Abbott, Novo Nordisk, Eli Lilly, Endo, EXACT Sciences, and AstraZeneca, and serves on the speaker's bureau for McNeil, Sanofi-Aventis, and Ortho McNeil, and Dr. Roberts reports no financial relationships relevant to this field of study.
Synopsis: Terminally ill cancer patients who had end-of-life discussions with their physician had better quality of life during their last week, and their caregivers had an easier bereavement.
Source: Wright AA, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300: 1665-1673.
Although there are multiple benefits to admission to hospice for a terminally ill patient and the patient's family, frequently, referral never happens or occurs too late. There are many real and perceived roadblocks to admission, including a paucity of hospice services, patients' overly optimistic self-prognoses, physicians' inadequate skills at prognostication and end-of-life (EOL) communications, and a concern that the necessary conversations leading to hospice referral might precipitate a major depressive episode.
This prospective, longitudinal, cohort study, conducted at seven outpatient cancer centers in five cities (four in New England and one in Texas), was designed to examine what really happens when physicians have EOL discussions with end-stage cancer patients. Subjects were recruited from September 2002 until February 2008. To be eligible, patients had to have distant metastases or cancer refractory to first-line chemotherapy, be at least 20 years old, and have an informal caregiver (ie, family or friend). Six hundred thirty-eight patient-caregiver dyads were enrolled. Only the 332 patients who died were included in this study. Patients were, on average, 58-years-old at the time of enrollment. Most were married (60%), white (64%), male (55%), and had health insurance (57%). Breast, colorectal, pancreatic, and lung cancers comprised 58% of the diagnoses. Caregivers were, on average, 51-years-old and predominantly female (77%). Most were spouses (51%) or adult children (24%).
Psychosocial factors and functional status were determined. The use of aggressive treatment (eg, admission to an intensive care unit [ICU], ventilation, resuscitation, chemotherapy, feeding tubes) was documented by chart review. Patients and caregivers were interviewed. Patients were asked, "Have you and your doctor discussed any particular wishes you have about the care you want to receive if you are dying?" Shortly after death, caregivers were asked, "In your opinion, how would you rate the overall quality of the patient's death/last week of life?" A median of 6.5 months after death, the caregivers were interviewed about their psychological adjustment.
Patients died a median of 4.4 months after enrollment. Most (63%) could not remember having an EOL discussion with their physician. There was a wide disparity between sites of care in this regard, ranging from 62% to 16%. There were no associations between EOL discussions and patients' demographic characteristics, whether they had insurance, what kind of cancer they had, how close they felt to their physician, whether they were religious, or whether they had social support. Positive associations were found for lower performance status, higher symptom burden, and shorter survival times. There was no association of EOL discussions with a patient feeling depressed or developing any DMS4 diagnosis. Patients who had an EOL discussion with their physician were more likely to accept that their illness was terminal, prefer palliative over curative care, and have completed "Do Not Resuscitate" declarations. They received less aggressive treatment and were more likely to have been in hospice for more than a week. Caregivers rated the quality of life (QOL) of their loved ones' last week of life as significantly worse if they received aggressive care. They reported feeling less prepared for the patient's death, and were more likely to develop a major depressive disorder, to feel regret over their loved one's death, and have worse QOL and self-reported health following their loved one's death.
This was not a randomized study, so no causal relationships can be inferred. On the other hand, the size of the study lends weight to its conclusions. Although the patients were recruited from cancer centers, there is no reason to believe that they differ from your patients who have advanced cancer. How similar are you to their doctors? Intuitively, oncologists should be more skilled at EOL discussions simply by dint of practice, but primary care physicians may have an edge by virtue of long association. We can only hope that these patients suffered dementia or were overly medicated to explain the dismal rate of EOL conversations.
Physicians are programmed to "do something" when presented with a patient in need. What can we do to help our terminally ill patients? We can employ a wider range of palliative options. Kutner et al showed that for advanced cancer patients, massage therapy can have an immediate beneficial effect on pain and mood.1 We can be better stewards of limited resources. In the current study, admission to an ICU was one of the factors associated with no EOL discussion. Rady and Johnson looked at this in 2004 from the perspective of informed consent.2 In this study, none of the patients transferred to the ICU, all of whom died there, had an EOL or palliative care discussion. Not only was this a violation of patient autonomy, it was outrageously expensive ($33,252 for those who were transferred vs $8,549 for those who weren't). We can learn to be better communicators. Even when presented with opportunities to connect with terminally ill patients, we don't take advantage of them.3 We can help the caregivers. Caregivers who report greater religiousness have lower rates of depression at follow-up,4 suggesting collaboration with religious support groups. We can begin our discussions about hospice much earlier, even as we attempt treatment. On average, patients in the current study died after four months. Admission to hospice when the patient is near death (ie, death within three days) is associated with major depressive disorders in caregivers.5 We can do more; our patients deserve it.
1. Kutner JS, et al. Massage therapy versus simple touch to improve pain and mood in patients with advanced cancer: a randomized trial. Ann Intern Med. 2008;149:369-379.
2. Rady MY, Johnson DJ. Admission to intensive care unit at the end-of-life: is it an informed decision? Palliat Med. 2004;18:705-711.
3. Morse DS, et al. Missed opportunities for interval empathy in lung cancer communication. Arch Intern Med. 2008;168:1853-1858.
4. Fenix JB, et al. Religiousness and major depression among bereaved family caregivers: a 13-month follow-up study. J Palliat Care. 2006;22:286-292.
5. Bradley EH, et al. Depression among surviving caregivers: does length of hospice enrollment matter? Am J Psychiatry. 2004;161:2257-2262.