Help your patients make decisions about end-of-life issues

As an advocate, you can help them plan the next level of care

Hospital case managers and social workers are in a perfect position to help patients and family members come to terms with end-of-life decisions before they are in a crisis situation, asserts Catherine M. Mullahy, RN, BS, CRRN, CCM.

"We are living in a society where death is seemingly an option rather than an inevitability. Everyone in health care recognizes that we can't cure everyone. If you look at the role and function of case managers as an advocate for the patient, who is in a better position to help them plan for the next step in patient care and to choose how they want to live out the rest of their lives," says Mullahy, president of Mullahy Associates, LLC, a Huntington, NY, case management consulting firm.

When patients and family members are facing end-of-life issues, a caring social worker or case manager can make a lot of difference in helping them cope with the situation, adds Elizabeth Clark, PhD, ACSW, MPH, executive director of the National Association of Social Workers, based in Washington, DC.

"We can't fix all the problems. We can just see that the patient has the best death that is possible by making sure that the symptoms and pain are under control and that the family has the best experience they can have so that when death occurs, they don't have a legacy of guilt," Clark says.

Don't approach the family without approaching the patient as well. The patient and family are the unit of care, Clark suggests.

Keep in mind that you won't be able to help a person resolve all the problems of a lifetime in the last few days before death, she adds.

"One of the problems that happens at end of life is communication issues. The family is holding onto hope, and the patient may be more aware of dying than the family is. One of the real roles is helping the patient and family to talk to one another about the hard issues," she says.

Case managers and social workers can facilitate symptom management and pain control to make the patient more comfortable and able to deal with end-of-life issues, Clark says.

"Death of a loved one is one of the most traumatic experiences anyone goes through. When you are invited into someone's dying moments, it's not just a job; it's a privilege to assist the patient and family in a major life transition," she says.

Doctors and other health care professionals who are treating patients should know what the patient's eventual wishes are and that's where case managers can be of assistance, Mullahy says.

With terminally ill patients, talk with the treating physician as well as the patient and family. Ask your patients what they understand their diagnosis to be, what the treatment has been, how it's working and, if it's not working, what they would like to happen.

"It's important to get the patient's viewpoint on what the doctor has told him and how he feels about it," Mullahy says.

Case managers and social workers can provide a great service to their patients if they make sure that terminally ill patients are referred for hospice care as early as possible, adds Elizabeth Hogue, Esq., a Burtonsville, MD, attorney specializing in health care issues.

"I see this trend throughout the country of people being referred to hospice really late. The hospice model of care isn't supposed to work that way," she says.

The average length of stay in a hospice program typically is short, Mullahy points out.

"This is unfortunately because most patients have been dying for many months if not for years and no one has had a discussion with them about end-of-life issues," she adds.

Many health care professionals have a mistaken impression of what a hospice program is like, Mullahy says.

She recommends that case management directors invite someone from a hospice program come in periodically and meet with the case managers to help them understand what hospice is all about.

"There are many wonderful hospice programs. Case managers need to understand what hospice is all about and educate themselves so they feel less fearful about it. Case managers can help raise awareness of hospice so that terminally ill patients can be in a peaceful environment rather than being in the hospital, where continuing treatment can be aggressive, uncomfortable, and futile," she says.

With today's short lengths of stay, social workers may be brought into the picture too late to establish the kind of rapport it takes to help the patient and family prepare for the end of life, Clark points out.

But health care professionals can still help the family through a difficult situation, she adds.

When a patient dies, advocate for the family to spend time with their loved one at the bedside, Clark suggests.

"People's deaths are often difficult and it's very hard on the family. After the death, the body is peaceful, and it's a good time for the family to say goodbye," Clark says.

Sometimes, the family doesn't want to be alone and the social worker can help the family say goodbye, Clark points out.

Keep in mind that the person who died is not "the body" but is still the husband or wife or child, she advises.

Case managers and social workers can help the family by making sure that they learn about the death in an appropriate setting, Clark adds.

Clark talked to a woman who was told about her husband's death in a cloakroom filled with boots and coats. Other patients have told her that when they came into their loved one's room, staff were already removing the flowers from the room.

"When someone hears about a loved one's death, even if they were expecting it, it stays with them forever," Clark points out.

When Clark's sister died of cancer, the nurses came into the room and talked about what they remembered about the patient.

"It was very meaningful to have them talk about what she had meant to them as a patient," she says.

If you have the luxury to do so, get back in touch with the family a week or so after the death to see if you can assist in any way, Clark suggests.

Help your hospital arrange quarterly memorial services for the patients who have died. It's a way to help the staff say goodbye.

Case managers have an opportunity to take a proactive approach to end-of-life issues, helping patients be aware of the kinds of decisions they need to make, even if they're not facing death in the near future, Mullahy says.

In most hospitals, patients receive information on health care proxies and advance directives from the admissions office clerks, and the conversation doesn't come up with medical professionals until the patient is deemed to be in a terminal state, she adds.

Nobody on the hospital staff routinely brings up end-of-life issues, she says.

"Nurses don't feel like it's their place to start a conversation. Talking about end-of-life when a patient has just been admitted doesn't exactly encourage feelings of safety," she adds.

The conversation about advance directives should become a normal and natural part of the conversations that case managers have with all their patients, Mullahy says.

"When I had staff, I asked them to include a discussion about advance directives as part of their initial evaluation and assessment. I think this could be a vital role for case managers to have," she says.

The Patient Self-Determination Act requires providers to ask all patients admitted if they have advance directives, Hogue says.

Check your patient record to make sure there is information about what advance directives the patient already has, Hogue suggests.

Patients should have a durable power of attorney and a living will or another document that gives direction about their wishes if they are terminally ill or in a persistent vegetative state, Hogue says.

Neither case managers nor hospitals should provide materials that they have prepared about advance directives, she cautions.

The statute requires each state's attorney general to develop materials related to advance directives. Case managers should provide only materials from their state's attorney general's office to their patients, she says.