When someone dies in the hospital

A death in the family, under any circumstances, is a profound event in the lives of immediate survivors. The vast majority of Americans survive the deaths of two parents and may also exprerience losses of a spouse, siblings and other close relatives and friends. When death occurs after a lengthy and difficult illness, family involvement in a relative's final days of life can be intense.

The majority of Americans end their lives in hospitals (63% of all people who died in 1980, last year for which national figures are available). Yet little is known about the impact on survivors of their experiences in hospitals as a relative's life draws to a close. Published accounts of firsthand experiences suggest that, from the family's perspective, hospitals are not always good places in which to experience the death of someone very close. How valid is this impression, and on what is it based?

In order to learn more about family perspectives on hospital care, the Institute for Consumer Policy Research, which is associated with Consumer Reports magazine, conducted in-depth interviews with 40 survivors of older patients who died of a long-term illness, such as cancer. The interviews covered many facets of family involvement during illness, including experiences with hospitals, with home care and with hospice programs.

Few of the families interviewed had serious complaints about the technical aspects of treatment in hospitals. In fact, slightly ober half said that they were satisfied overall, with the treatment their relatives received. However, those who had experiences with both hospice and hospital care were almost unanimously of the opinion that during later stages of the illness, hospice care was much the better of the two. Virtually all the families, whether satisfied or not with the hospital care, raised specific problems over and over again. These problems included:

* bodily care and cleanliness for the patient

* relief of pain and other severe physical symptoms

* communications with physicians

* emotional support for patients and families

* interaction among hospital staff, patients and families

* events immediately surrounding the patient's death

According to immediate survivors, some of these treatment elements were handled adequately during earlier stages of illness but tended to be mishandled or neglected as the illness wore on. Families expressed the most acute dissatisfaction with care in the period just preceding death.

It was also apparent that while some problems stemmed from individual attitudes and behavior, many resulted from hospital procedures and policies--that is, they were built into the system. the Institute's study therefore developed specific policy recommendations addressed to health care providers and to families of patients. Bodily Care and Cleanliness

Nearly all family members assumed that their relatives would be kept clean and comfortable while in the hospital and were very perturbed when this was not done. The problem became more and more acute as patients grew increasingly disabled. Some families responded by hiring private duty nurses or tipping ward personnel. Others bathed and cleaned sick relatives themselves or allowed them to suffer the consequences of inadequate personal care, such as painful inflammations, bedsores or unhealed radiation burns.

Some spoke of the loss of dignity suffered by partially incontinent relatives who were not adequately attended to. Lack of attention to the patient's personal hygiene was highly distressing even if the patient was not conscious:

My father would make his bed dirty and the aides resented it. They couldn't deal with it. I don't think he was much aware of things at that point; he was on the way out. But that doesn't mean he shouldn't have been serviced, shouldn't have been kept clean. For my sake. Relief of Pain

Some patients were luckier than others; in that their illnesses did not involve long periods of severe pain. Over a third of the patients in the study were less fortunate; for them, pain became a major problem during the last stages of life.

Exactly half of these patients were in the hospital when their pain became unmanageable. According to the immediate family, efforts to control these cases of terminal pain were not very successful. (Greater success was reported when patients were treated in hospice programs.) Witnessing the suffering of a spouse or parent was a source of considerable anguish for close relatives.

According to family members, nearly all the hospital patients with unmanageable pain were treated with pain killers containing mixtures of demerol or codeine. Only in one case were stronger medicines based on morphine or methadone reported. While some family members were uncertain about the specific ingredients of pain medicines, severe pain remained for many patients and families an unresolved and tormenting problem. Communicating With Physicians

For most of the families we interviewed, a good relationship with the patient's physicians was of prime importance. Many factors entered into perceptions of a good relationship, but from the family, standpoint, satisfactory communication was the most outstanding. While contact and communication were important throughout the entire illness, they were especially so during hospital admissions, which were typically times of uncertainty and anxiety.

On the whole, families felt that their physicians had been reasonably available and were usually candid in their statements about the patient's condition. On the other hand, families frequently reported that doctors gave information in an inconsiderate or insensitive manner and did not take time to listen and respond to the family's concerns.

There was close consensus in this group about qualities that made doctors come across as good or poor communicators. For example, most people who perceived their doctors as good communicators described the ability to listen, to respond directly to questions and to convey respect and regard for patient and family. Doctors who were characterized as brusque and businesslike were generally well received, as long as genuine concern was conveyed. Some qualities that most often led families to characterize doctors as poor communicators were: undue haste, a tendency to be flippant, and a cold, inhibited or arrogant manner. To illustrate:

He never allowed time. He was very quick to respond and move on. . . He was the kind who had a ready joke, who made light of things, and I got the feeling that, until the end, he wasn't serious with us. He had this "front" of joviality and wit and it was sometimes out of place with what I wanted to discuss with him.

Dr. Brown's manner with my husband was arrogant and unfriendly. He was always telling John what a wonderful doctor he was. He had made a speech here, he'd been invited here, he'd been awarded a medal. You know--here was this very sick man who would never do anything again. . . Now, I was raised to believe that if you have to boast about yourself, you're afraid. . . So Dr. Brown scared me when he acted like that, and he scared John too.

An especially difficult task for many doctors was delivering bad news to patient and families. Over half of those interviewed said they had received discouraging news (such as the diagnosis of cancer or an unfavorable prognosis) over the telephone. Virtually all said they preferred receiving distressing or frightening information face-to-face. Sometimes, bad news was delivered abruptly, with little or no warning. A wife who described her doctor's manner as "brutal" reflected on such an incident: "I asked myself, is there a good way to give that kind of information? I think there are a lot better ways than we got."

The following interview excerpts illustrate what some family members found to be "better ways". The physicians quoted here employed very different personal styles of communication. But each was essentially truthful, took time with the family to express concern, to answer questions and to point out hopeful aspects of the situation.

Dr. M. sat us both down and he said, "Look, there is a mass there, a blockage . . . and at the moment, it's not moving. Now, we're going to help you; we're going to get rid of that pain. We'll do whatever we can . . ." And he said to my husband, "This is inoperable, but that doesn't mean that tomorrow you'll die, you know," and my husband asked him, "Well, how long will this be?" Dr. M. said, "I can't really answer that question, but you're going to make it to your 65th birthday." I guess he sort of lightened the blow. . .

I got to the hospital and Dr. B. was waiting for me by the elevator. We went into Jim's room. And Dr. B. pulled up a chair and sat down. "Well, Jim," he said, "I feel like a son-of-a-bitch telling you this. But," he said, "this treatment isn't working." And he talked a little bit more, and then he asked Jim, "Do you have any questions?" There was a long silence and we all sat there. Then Jim said, "How long?" and Dr. B. said, "Six months, five, seven--who knows?"

Some physicians who were perceived as supportive during early stages of the illness distanced themselves as the patient worsened and hopes waned. This was not appreciated. One wife actively moved to prevent her husband's physician from withdrawing:

Things were very bad after Bob's third surgery and the doctor just stopped coming to see him. And I went and found him and said "Do not do this . . ." I look back and wonder that I had the gall to do it. But, I did go after him and say, "Just stick your nose in the door, just let him see your face. Because if you don't, it's like you're saying, I've abandoned you and there is no hope. . ." It seemed the most absurd thing in the world to turn your back on someone because you could no longer save his life. Psychosocial Support

Most family members in the study did not view themselves as the kind of people who normally needed psychological help. But many indicated that during the patient's illness and hospitalization they experienced strong support needs. Two-thirds said they were not offered any sort of practical or emotional support by anyone working in the hospital, during the patient's admissions. It is worth noting that families appreciated virtually all efforts or gestures of support that they were offered. For example:

Mrs. G. tried to do some counseling with us . . . tried to get my father to deal with his feelings. It helped my mother and me a lot and it helped us as a family. We were able to talk as a family. Mrs. G. was great. She knew we were there and she went out of her way to find us.

Nursing staff were the most frequently mentioned sources of support, closely followed by social workers. However, assistance from social services often came late in the hospital stay--typically just before discharge, when some families were contacted by discharge planners or home care workers. Unpleasant Encounters

Insensitive or hostile behavior on the part of hospital personnel was extremely troubling to family members, particularly at late stages of the patient's illness. The quality of interaction was perceived to vary widely from one hospital to another and even between different floors or units in the same hospital. A woman whose elderly parent was a patient at a large urban hospital finally resorted to cash payments in order to escape hostility on the part of some hospital workers:

It was the service people ... who were angry and hostile, people who are overworked and underpaid. And that's too bad in an atmosphere like the 5th floor ... The oftener we tipped, the better off we were and that's what I did for the rest of the time ... I tipped anybody that was going to be involved. It's wrong, but it can't be helped.

It should be emphasized that hostile behavior occured at all levels of hospital staffing. The sister of a patient at prestigious medical center described a physician's outburst directed at the patient's mother who could not control her anxiety over her daughter's approaching death:

The Clinic didn't want Sharon back ... I know they didn't because they told Mother they couldn't do any more for her. And a doctor then ... cancer man on the floor yelled at Mother. Mother was a wreck. she was always at the doctors, asking "Can't you do something?" and this doctor just turned around and lashed at her. He said "You were a fool to bring her back here. She's dying, and there's nothing we can do for her. Now leave me alone!"

Even when families realized that hospital staff worked under great pressure, they found hostile incidents difficult to forgive and forget. Family members who recalled such incidents described them with strong emotion. Some said they still relived or dreamed about these episodes and could not seem to let go of them; the episodes appeared to be fused with memories of the relative's last days. Handling the Patient's Death

The actual occasion of death had great impact and meaning for immediate survivors. Whether or not the death "went well" could be a source of comfort or of added grief. One fourth of the interview group experienced the death of a relative in the hospital. (Although most Americans do die in hospitals, the study group was divided among those who died in hospitals, home and hospice settings.) Regardless of the setting, family members consistently defined their own needs on the occasion of death as follows:

* to be adequately forewarned.

* to spend as much time with the patient as desired.

* to know the patient is not afraid or in pain.

* to do something helpful for the patient, no matter how small.

* to have opportunities for final communication.

* to receive explanations and reassurance about physical symptoms that may accompany death.

* to have aftertime with the patient's body, if desired.

* to express grief without fear of censure.

Few family members whose relatives died in a hospital after a lengthy illness felt that the setting was conducive to a death that "went well" in terms of the criteria cited above. One woman described her father's death at a large hospital as follows.

I was home cooking dinner ... and they called us down, saying it was the end. So we drove to the hospital but we couldn't find a parking spot and went round and round and finally, when we did park and ran in, they told us to get out, that they were trying to resuscitate him ...

There was no doctor to talk to us; we got to talk to a doctor over the phone. And they didn't even have a special place where people can go in private; we were just walking the halls.

And then, as we were grieving, we said, "Could we have a priest?" and one nurse said, "Oh, no ... it's too late now. It's been too long; they won't come after three minutes ..." And, well, there was another nurse who came over ... and she was very nice. She said, "We'll get a priest; don't worry," and eventually, they did.

The hospital death described above was one of the most traumatic in the group, from the family's standpoint. Nevertheless, many families found some aspects of the hospitals' handling of the death to be unsatisfactory, serving to aggravate rather than alleviate the sorrow and pain of the event. Like recollections of Hostile incidents, these memories accounted for a strong sense of grievance as late as two years after the loss.

Families whose relatives died in a hospice unit or at home felt that their own needs in the hours surrounding death were better met.

A wife whose husband died on a hospice unit commented:

They have special people there ... they came over to us; they said, "he's in God's hands now." They were very kind. They didn't herd us out--they let everybody in the family come in. They let us cry. They didn't try to shush us up because of the other patients. There was a special place for us. They let us be natural, and that was a lot of help. Opportunities for Improvement

While some hospitals have made significnt strides toward developing humane policies on treatment for dying patients and their families, these interviews indicate that serious unresolved problems still remain.

For example, some hospitals reportedly denied admission to patients in the last day or hours of life, who desperately needed relief of pain. A hispital administrator was quoted as explaining to a patient's wife that "this hospital is for sick people, not dying people." Given the shortage of beds, the admission of a moribund patient for symptomatic relief was against hospital policy.

The allocation of scarce beds is indeed a difficult problem. Nevertheless we recommend that hospital management carefully reexamine current policies so that no one requiring relief from severe pain is denied it, regardless of life expectancy. Several families reported the discharge of older, terminally ill relatives because benefits had run out or because of decisions by hospital review committees. few were aware of the role of these committees or of utilization review criteria. We suggest that families ask for a complete justification of all such decisions and about procedures for appeal. Patient representatives, social service workers and discharge planners are among those who can provide information. A reasonable position to take is that if a very sick patient is discharged after review, the hospital has a moral obligation to assist in finding appropriate alternative care.

We recommend that hospital educators and administrators focus on the provision of adequate bodily care to frail or diabled patients as a target issue in training and supervision. Incentives can be provided for improving this difficult aspect of patient care. Managing incontinence can be made less b urdensome by the use of teams, by task rotation, by role modeling and by professional rewards for competent performance.

Over the long term, medical educators need to give attention to the impact on very sick patients and their next-of-kin of indifferent, insensitive and hostile behavior on the part of medical personnel at all levels. Special attention should be focused on the period just preceding and following death. For the present, hospital and nursing administrators can take a number of short-term steps to alleviate specific problems. These include:

* providing adequate forewarning of expected death.

* insuring availability of emergency parking for families of the dying.

* allowing families to be with patients during the last hours of life, if desired.

* instructing personnel to provide explanation and reassurance about physical symptoms families may witness.

* educating personnel to deal nonjudgmentally with grief.

* permitting families a reasonable period of time with the body of a relative after death.

* making private space available for families in the immediate aftermath.

These are only a few highlights of policy recommendations for improving hospital treatment of patients and families at the last stage of life. For more information about the study, which is entitled "Life Support: Families Speak About Hospital, Hospice and Home Care for the Fatally Ill." and was completed in 1983 with support from the New York Community Trust, contact the Institute for consumer Policy Research, Consumers Union Foundation, 256 Washington Street, Mount Vernon, New York 10553. Phone (914) 667-9400, ext 455.

COPYRIGHT 1984 U.S. Government Printing Office
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