Communication Between Physicians and Surviving Spouses Following Patient Deaths
SUSAN W. TOLLE, MD, PAUL B. BASCOM, BA, DAVID H. HICKAM, MD, MPH, JOHN A. BENSON, JR., MD
The authors evaluated the perceptions and adjustments of surviving spouses following patient deaths, Of 128 married patients dying in a university hospital in 1983, the surviv- ing spouses of 105 (82%) were personally interviewed a year after the death. The physicians" perspectives were re- corded through chart review. Half of all spouses had had no subsequent contact with the physicians who had cared for the deceased, and 55% of spouses still had unanswered questions regarding the death a year later. Survivors of unexpected deaths were found to be at high risk for poor subsequent adjustment. Spouses with poorer adjustments consulted their own physicians more frequently, and used more alcohol and tranquilizers. The results identify areas where improvement is needed in communication with sur- viving spouses after patients" deaths. Key words- grief; bereavement; death; adjustment, psychological; physi- cian-patient relations; education, medical; ethics, medi - cal; autopsy; death of spouse. J GEN INTERN M~o 1986; 1:309- 314.
SURVIVING SPOUSES have extensive physical and emotional needs. Their morbidity and mortality are increased for a year or longer following the death. Their suffering can be manifest by increased so- matic symptoms, drug and alcohol use, hospitali- zation and death. 1-7 Although few studies have ex- amined the effectiveness of medical interventions with regard to the health of survivors, bereavement counseling supervised by psychiatrists has been shown to reduce somatic complaints and visits to physicians. ~-10
The primary physician is in a unique position to provide support for the newly bereaved. How- ever, the strengths and weaknesses of primary physicians' current practices in communicating with bereaved spouses have not been examined.
We conducted an observational study of phy- sician communication with surviving spouses a year following in-hospital deaths. We evaluated surviving spouses' perceptions of the circum- stances surrounding death and subsequent phy- sician contacts. We also assessed communication between physicians and spouses by comparing their perceptions of the circumstances of death. We identified survivors' needs for subsequent contact with physicians, and defined characteristics of sur- vivors at increased risk for poor adjustment. Fi-
Received from the Department of Medicine, Oregon Health Sciences University, Portland, Oregon,
Address correspondence and reprint requests to Dr. Tolle: Oregon Health Sciences University, Division of General Internal Medicine L475, 3181 S. W. Sam Jackson Park Road, Portland, OR 97201.
nally, we propose specific guidel ines for more ef- fective communicat ion with fami l ies fo l lowing patient deaths.
We reviewed all deaths occurring at the Ore- gon Health Sciences University Hospital from Jan- uary 1 through December 31, 1983. Of the 270 adults who died during that year, 137 had a surviving spouse. Medical records for all 137 were reviewed by one of us (ST) for potential inclusion in the study. Nine patients were excluded from the study, six because of the interim death of the surviving spouse. Data collected by audit of each of the 128 remaining charts included: demographic charac- teristics, clinical cause of death, location at the time of death, service of care, number of hospital- izations, autopsy information, and the degree to which death had been expected by the physician.
Each spouse was then mailed a letter explain- ing the study and inviting him or her to participate. For those willing to participate, phone or in-home interviews were scheduled, and written informed consent was obtained. Of the 128 eligible surviving spouses, 105 (82%) were interviewed. Seventy-two per cent of interv iews were conducted in the spouse's home; the remainder were performed by telephone.
Interviews lasted between 30 and 150 minutes and were conducted from eight to 19 months after the death (mean = 13 months). They were guided by a five-page questionnaire which was designed for use by interviewers with limilted medical ex- perience. Most of the questions were open-ended, e.g., "To what degree were you expecting your spouse's death?" This structured interview format had previously been developed and refined through a pilot study conducted with surviving spouses of patients dying in late 1982. The interviewer was unaware of the chart information and had no prior knowledge of the circumstances surrounding any of the patient deaths.
The interview addressed four major areas. First, questions were asked about the spouse's percep- tions of the medical circumstances of the death (duration of illness, the degree to which death was expected, the cause of death, the method of noti- fication of the death, and the family's response to each method). Second, there were questions about
310 Tolle et aL, COMMUNICATION WITH BEREAVED SPOUSES
the nature of subsequent communications with physicians, as well as the family's response to each contact (cards, phone calls, follow-up appoint- ments, and autopsy information). Third, we asked about the persisting unmet needs of survivors (per- sisting unanswered questions about the death). Fourth, we assessed the spouse's adjustment a year after the death.
The interviewer assessed the spouse's read- justment following the death according to the cri- teria proposed by Brown and Stoudemire." Ad- justment was classified as "good" when spouses reached the resolution phase, having recognized that they had grieved, they were able to return to work, regain an interest in activities, and seek the companionship of others. The adjustment of those spouses who remained preoccupied with the de- ceased was classified as "poor." At the time of the interview, these spouses continued to have anger, sadness, insomnia, anorexia, weakness, fatigue, guilt, thoughts of the dead, and introversion, and had not regained interest in activities. Adjustment was designated as "fair" when a mixture of preoc- cupation with the death and features of resolution were identified.
We assessed the reliability of the first inter- viewer. A second interviewer evaluated the ad- justment of a stratified sample of 35 spouses three months after the first interview. Interobserver agreement, measured by the kappa statistic, was 0.42; this compares well with levels of agreement found in other medical settings. ~ Each discrepant classification was reviewed, and both interview- ers' justifications were evalulated. Differences were attributed to documented changes in adjustment during the three months between interviews in all but one case. This case was reclassified from poor to fair; all others were analyzed according to the classification given by the first interviewer.
The chi-square statistic was used to assess the significance of differences in questionnaire re- sponses between groups of respondents. The kappa statistic was used to assess agreement between the spouse and the physician with regard to au- topsy status, cause of death, and the degree to which death was expected. Stepwise logistic regression was used to measure the degrees to which different clinical attributes were independ- ent predictors of surviving spouse adjustment.
For the 105 adults who died, the mean (+- SD) age was 62.2 ( 13.7) years. Fifty-five per cent were male, 93% were white, approximately a third were Protestant, and a third had no religious preference. The deceased had been married to the surviving spouse an average of 33.7 ( 15.1) years at the time
of death. Forty per cent of the deaths occurred dur- ing the patient's first hospitalization at the univer- sity hospital. The majority of deaths (62%) occurred in patients cared for on the internal medical serv- ice; 35% were on surgical services, and only 3% were under the care of other services (family prac- tice and ob-gyn). The causes of death included neo- plasms in 37% and cardiac disease in 31%. These deaths occurred primarily on the hospital wards (42%) and in the intensive care units (44%); only 9% occurred in the emergency room and 4% in the op- erating room. The death of one patient, an outpa- tient with terminal cancer, took place in the ra- diology department.
Physician-Spouse Perceptions of the Medical Circumstances of Death We found good agreement between physicians
and surviving spouses on the cause of death. There was complete agreement on the major cause of death for 89% of patients and partial agreement for the other 11%. Those with partial agreement usu- ally knew death had been caused by cancer but did not know the tumor type. Even though survivors were in agreement on the major cause of death, 20 spouses still felt that their knowledge of the cause of death was incomplete, and expressed anxiety about their lack of information. Most spouses had copies of the death certificate. A few spouses were upset by or disagreed with the wording used in describing the cause of death.
Phys ic ians and spouses genera l ly agreed (kappa 0.54) on whether the death was expected. For 83 (79%) of the deaths, there was agreement on whether death was expected or unexpected. In 11 instances the family was expecting the death and the physicians were not. All of these patients had had substantial prior i l lnesses but were new to our hospital and had died shortly after their arrival. In another 11 instances the doctors were expecting the death and the family was not. In most of these instances, a major sudden event had occurred just prior to the hospitalization (e.g., head trauma, massive myocardial infarction). The patients' poor prognoses had been evident to physicians imme- diately but survivors had needed more time to ac- cept the death.
The degree to which death was expected was affected by the medical setting. The spouse and physician were more likely to expect the death when the decedent had had a longer period of il lness before death (p
JOURNAL OF GENERAL INTERNAL MEDICINE, Volume 1 (Sep/Oct), 1986 311
Spouses reported many reasons for expecting the death. The most common reason was "the way he/she looked," reported by 86% of spouses who expected the death. Seventy-one per cent stated the doctor had told them to expect the death, and 33% had been told to expect death by their dying spouse. When death was expected, the family was more likely to be at the bedside, and the patient often remained on the general hospital ward. Unex- pected deaths occurred with greater frequency in the intensive care units, emergency room, and op- erating room, and spouses were less frequently at the bedside when death occurred.
Survivors were informed of the death by var- ious persons. Half of the spouses were notified by physicians, 22% by nurses, and the remainder by non-medical persons (family members, friends, and the family minister). Survivors had no objections to having been notified by someone other than a physician when contact with the physician was available subsequently. However, spouses often expressed a desire for privacy and support when they were informed of the death. A majority of spouses (81%) preferred to have friends or family with them at the time of notification. Only 19% wished to have been alone. Being with their spouse at the time of death was important to most survi- vors. Many survivors who were not with their spouse expressed the strong wish to have been at the bed- side at the time of death.
Subsequent Communication with the Deceased's Physician
Spouses expressed a need for improved com- munication with physicians regarding the post- mortem examination. Sixty-eight spouses reported having been offered the opportunity for a post- mortem examinat ion . Twenty-seven of these spouses stated they had denied the request for an autopsy, for a variety of reasons, such as concerns about disfigurement and feeling the cause of death was already known. Several spouses stated, "he had already suffered enough." Even though agree- ment between survivors and physicians regarding whether an autopsy had been performed was sta- tistically good (kappa 0.76), in 12 instances spouses were incorrect in reporting whether an autopsy had been done. Six spouses thought an autopsy had been done when it had not. Despite having given consent, six others were unaware that an autopsy had been performed.
Autopsies were performed on 41 of the 105 pa- tients. Over half of the spouses (51%) stated they had never received any report of the autopsy find- ings. A year after the death, 25 (61%) of the spouses still wanted a further explanation of the autopsy findings. However, 26 (63%) felt the autopsy had
TABLE 1 Physician-Spouse Communication after a Patient's Death
No physician contact
Physician contact* Physician sent a card Physician called spouse Spouse called physician Office appointment Physician attended the funeral Other contact with physicians at
University Hospital Contact with physicians not affiliated
with University Hospital
52 (50%) 13 (12%) 9 (9%) 6 (6%) 7 (7%) 0 (0%) 6 (6%)
* Multiple responses included.
been beneficial, if not for themselves, then for oth- ers.
Physicians infrequently approached families about anatomical donation. Only 15% of spouses reported having been asked for an anatomical do- nation. Of the 105 deceased patients, only 17 had made an anatomical donation, and a third of the families reported that they had initiated these do- nations.
Spouses reported limited contact with physi- cians after the death to address questions or to receive support following their loved one's death. Fifty per cent of spouses had had no subsequent phys ic ian contact regard ing the death. Those spouses who did communicate with physicians had a variety of interactions (Table 1). There were 43 spouses who specifically stated a desire for further contact with the physician, and 72% of these had had no follow-up communication in any form.
Survivors expressed an unmet need for an- swers to persisting questions. Fifty-five per cent of spouses still had at least one unanswered question a year following the death (Table 2). Although many had questions regarding the findings or interpre- tation of the autopsy, when questions regarding the autopsy were excluded, 51% still had at least one specific question regarding the death. Of the 20 spouses requesting clarification of the cause of death, most were confused about the immediate cause of death but knew the major underlying di- agnosis. Thirty per cent had some question re- garding the medical care given prior to death, in- c luding quest ions about excess ive care (prolongation of life and suffering) or failure to di- agnose the condition which ultimately led to death. Spouses occasionally blamed themselves, ques- tioning whether they might have done...