End-of-life caregivers often don’t get support

Grief counseling should be available

In teaching health care providers how to care for patients at the end of life, many institutions forget to teach the providers that they need to care for themselves as well. Physicians, nurses, and other personnel who care for dying patients on a daily basis — who also must frequently cope with the death of a patient — need special support if they are going to continue to provide optimal care. Nursing homes, hospices, and hospitals are just beginning to provide the sorts of programs and education that these caregivers need, say advocates.

"Caregivers and staff often become like family," says Donalyn Gross, PhD, LCSW, a clinical social worker who works with nursing homes to improve the care of and response to dying residents. "Sometimes, residents will tell the caregivers something that they would not tell their immediate family. And they also hear things from family members that they don’t want the resident to hear. They develop a relationship."

When Gross began working in nursing homes as a teenager, she noticed that residents’ deaths were met with little ceremony. Often after a resident died following a long illness, the staff members simply would do what was necessary to take care of the body, then simply close the door and wait for representatives from the family or funeral home to arrive and do the rest.

Aside from the negative impact on residents’ families, this also had a detrimental effect on the caregivers, Gross contends. "The tended to shut down and feel as if they had to distance themselves from the people they cared for. They were also very uncomfortable with death and the process of dying, yet they saw it all the time."

In Gross’ current practice, she encourages nursing homes and hospitals to establish support groups for people who care for dying patients and encourage open discussion and sharing of feelings of grief and uncertainty after a patient’s death. "It doesn’t have to be mandatory that people attend the groups, but it should be available," she notes. "More people are recognizing that this is a need that caregivers have. I had a call recently from a nursing home director who said, We’ve had a lot of deaths here recently. Can you come in here and help get people to talk?’ They need to know that their feelings are normal, and it is OK to feel bad, and it is OK for them to cry."

Gross also encourages facilities to hold some sort of ceremony for people who have died. At the nursing home where she currently works, a memorial service is held annually to honor the residents who have died over the past year.

"We invite the residents, family, staff . . . everybody. Everybody pitches in with the planning, and it is a wonderful thing. We play music, and we allow people to share their memories of the people who died." The services give staff a chance to honor the residents they have come to know, and the residents’ family members are comforted by realizing their loved ones were cared for and really known by the people at the facility, she adds.

Although hospices often are an exception, many health care facilities fail to recognize that clinicians may grieve the loss of a patient or have difficulty dealing with patients’ deaths over time, agrees the Rev. Martha Jacobs, former chaplain with the New York United Hospital Medical Center, now the associate director of pastoral education and community-based programs with The Healthcare Chaplaincy, a nonprofit, multifaith center dedicated to advancing pastoral care at health care sites throughout the New York City metro area. "Hospices do a better job with this, and they often offer support groups for their staff," she notes. "But in hospitals, a lot of times the prevailing attitude seems to be that you shouldn’t have feelings, and if you do, you need to deal with them on your own time."

Hospital staff often have problems coping with their feelings of grief over dying patients, particularly when a patient’s case has been very difficult, or when the patient is close to the caregiver’s own age, Jacobs says. "That challenges the chaplains a lot as well, when someone close to your own age dies. And if the providers have gone through a death in the family recently, that can be difficult as well. For example, a nurse whose mother has died may have a difficult time coping when faced with the children of a dying patient."

At her former hospital, Jacobs frequently tried to organize debriefing sessions for staff after the death of a patient — particularly if the patient’s care had been difficult or the patient had been in the hospital for a long period of time. "It’s essential that staff have that opportunity to vent their feelings and talk about them," she notes. "If they are forced to keep bottling it up inside, they start to lose the ability to be sympathetic with the patients and start to distance themselves. At that point, they will burn out very quickly."

It may be necessary for the support group meetings or debriefing sessions to be held at an out-of-the-way place, Jacobs adds, because there still is sometimes a stigma associated with health care providers who need help. "I found this to be true during 9/11. The fire and police departments had support groups and sessions available for the people working at Ground Zero, but many people did not want to be seen leaving the site or be taken away from their duties."

Health care providers are very accustomed to being the people whom others turn to for help, and it may be difficult to accept the idea that they need help, too.

"There is sometimes the idea that if you seek help to deal with these negative feelings of grief, then others will think you are burned out or you aren’t capable of doing that job any more," Jacobs says. "In reality, I think the day you don’t have a problem with patients who die is the day that you need to stop."

Facilities also need to provide education about the stages of dying and what might happen with patients when they are dying, Gross points out. This information is particularly necessary for staff who may help care for patients, but have little medical training themselves.

She holds training workshops for nursing home staff on understanding death and dying and covers both common clinical stages of dying and some of the physical manifestations that might occur. Gross also covers how to relate to and speak to patients who are dying and to their families. "Especially in a nursing home, the housekeepers and even the dietary staff will get to know a patient, and it is important — and they are so relieved to learn these things. "It helps them become more comfortable with the idea of death and dying and in knowing the things that will happen."

As the staff become more comfortable with death and mortality, they are better able to bond with the residents and care for them, both before and when they die, she adds. "I’ve seen such a change in people. Where once they may have been very remote — when someone died, they just did their job and cleaned the body and shut the door and that was that. Now, some people will actually sit with someone who has died; they wait until the family comes in or the funeral director comes in.

"You can really see the change and that they are more comfortable with things. They talk about things more freely and are more comfortable with the family and talking about that person than they were before," Gross says.

[For more information, contact:

Donalyn Gross, PhD, LCSW, Good Endings Inc., P.O. Box 60501, Longmeadow, MA 01116.

The Rev. Martha R. Jacobs, Associate Director of Pastoral Education, The HealthCare Chaplaincy, 307 E. 60th St., New York, NY 10022.]