To Know, To Listen, To Care:
The Nurse's Gift to the Dying
Mary Raju Cole, RN, MSN, FNP

Death touches healthcare providers in all clinical settings. Although nurses are inherently competent in many diverse situations, nature still seems to leave them unprepared for the inevitable loss of patients. Empathic caregivers offer their patients hope and foster positive attitudes, but they sometimes suffer unpredictable emotional responses when these patients die.

“Empathy is not a technical skill,” says Edwin Cassem, MD, professor of psychiatry, Harvard Medical School and Massachusetts General Hospital, Boston, who teaches near-end-of-life psychiatric care. A nationally renowned leader in the specialty of consult-liaison psychiatry and past president of the Academy of Psychosomatic Medicine, Cassem adds, “It is also not something that can be learned.

“Yet, nurses have the ability to do it so well. It seems to be in their nature. They have a trained eye to walk into a room and see the smallest detail that will make a patient feel better. Even the ability to soothe the embarrassment of a patient who has soiled himself and put him at ease is a gift,” he says. Cassem agrees, however, that nurses face the same challenges as other providers when they face dying patients and their families.

Novices at Heart

Perhaps students have a tougher time than more practiced nurses. “Of course, it depends on how expected or sudden the death is,” he says, “but all nurses suffer an extraordinary sense of loss when their patients die, despite feeling that they are ‘prepared’ for that outcome.

“A nurse’s biggest challenge becomes the decision whether or not to truly get to know that patient, understanding that he or she will die at some point in the future. It is easy to hide behind professionalism,” says Cassem. “A nurse must get beyond the illness. Walking the patient to the bathroom is important, but talking to that person is necessary to be truly empathic.”

The Road to Self-Disclosure

How do nurses get beyond the illness? Or to be precise, Where are nurses trying to go, and how do they get there?

“Getting beyond the illness means recognizing the patient as a person…not a pancreatitis in room 256 or the ovarian cancer down the hall,” says Cassem. “A person who is sick for a long time can adopt the persona of an illness…he or she becomes a diabetic, a cancer patient, etc. It becomes complicated to maintain a personal identity.

“Time spent bathing, feeding, and comforting patients can often be lost because caregivers become distracted by the ‘dying.’” Cassem says, “Make this time meaningful. Ask patients about themselves. Who are they? Who are their families? Do they have siblings? Who were these men and women in the prime of their lives? Did they serve in the military? Did they save anyone’s life or did someone save theirs?”

When Words Are Hard to Find

Interviewing a dying patient can be complex, especially if the practitioner is a novice. Cassem suggests using simple, direct questions. “Tell me something about yourself.” “What things are important to you?” “When you look back on your life, what are you proudest of?” “Getting to know questions” tell you about the person’s past (e.g., books published, service awards).

“The most poignant part of these relationships,” says Cassem, “is after trust is established…patients talk about shattered dreams, unmet goals in life, achievements, and failures…truly privileged information.”

Tread Softly

“One cannot assume that because a patient is dying, he or she wants to talk about it…regardless of your relationship,” cautions Cassem. Patients may think about death, make reference to it, or ask questions around it, but that does not mean they are ready to say it out loud. Follow their lead, but tread softly.

For example, a patient might say, “Well doc, I thought I was going to get a new car in the spring, but I guess I’m not going to have to worry about that now.”

“This is a tricky situation,” Cassem warns, “because this man is not asking me to tell him that he is right…he won’t need that car. Being overly supportive is agreeing, in a sense that he is going to die by spring. Therefore, my response is guarded: ‘Why is that?’ or ‘What makes you say such a thing?’ or ‘How sick are you?’”

Remember to take the patient’s lead. “My second remark feeds off his first comment,” says Cassem. “When the person is ready, I encourage him to express his emotions: ‘How does that make you feel?’”

Another query might be, “How long does someone with cancer live?” Cassem usually responds, “Why do you ask?” or “Have you spoken with your doctor?” to maintain open dialogue.

“Patients both appreciate and need honesty,” says Cassem. “The worst thing you can do is lie to them… if you do, they will never believe you again, regardless of why you withheld the truth.”

All in the Family

As nurses strive to increase patients’ comfort levels, they can often call on family members for assistance. Although, Cassem notes, “Each family is unique, needing a different level of intervention. I try to get a basic feeling of their dynamics. There may be bereavement issues, financial problems, Do Not Resuscitate conflicts, personal estrangements, or perhaps the struggle of a dying mother who needs support preparing her children for her death.”

Familiar items from home are inspiring. Cassem requests old letters and birthday cards to remind the patient, for example, that he’s a great dad, a terrific grandfather, and a loved husband.

Sometimes he asks relatives to bring in music that the person once enjoyed. He encourages families to read stories, poems, and news. “Do not stop talking because you assume he or she cannot hear you…you never know how much patients can hear,” says Cassem.

Caution: Slippery Road Ahead

“Nurses, unfortunately, become the target of many unhappy households,” remarks Cassem. “Take my example of a young man from California who has not visited his mom in seven years. When he arrives at the hospital, he is angry and critical…he watches every move the nurses make…monitors their work, their documentation, their break time… plays one worker against the next, then criticizes nurses on all shifts.”

It seems to be a constant battery until someone can defuse the situation. Despite these outbursts, nurses must understand that this animosity has nothing to do with them. They can actually be the agents to bring peace to this relationship.

“This man’s rage is at his mother,” says Cassem, “and it is proportional to his criticism of the nurses. The anger that someone has toward you as a nurse is likely to be proportional to the amount of hostility that person has toward his family member.

“Although nurses become overwhelmed,” Cassem says, “striking out at the family offers no solution. These individuals need guidance to alleviate conflicts, and the patient deserves a death without discord. Try to draw them into the patient’s care. Ask, ‘Tell me a little about your mom?’ ‘What is her favorite music?’ Perhaps they can improve his or her stay.”

Who Will Raise My Children?

How can nurses support mothers or fathers who must prepare young children to live without them?

“Ovarian cancer is quite extensive in our patient population, so this situation is quite common,” says Cassem. “Nurses in all settings, however, should know some basic principles.

“A mom must talk to her children. She should enforce their good qualities because she knows them best…tell them that they are good and smart and kind…and there are no better qualities to have.

“Give them good advice for their future, e.g., ‘You have a little bit of a temper, but if you work to contain it, you can achieve many good things.’ Or ‘When times are tough, remember that I would tell you to do this…or you can make the other decision, but you don’t need me to know what is right.’ They will remember that advice,” he says.

“It is crucial for a mom or dad to tell children that their dying is not their fault,” says Cassem. “They must understand that they did nothing wrong. And just because the parent is sick does not mean that the child will die, too.

“When the family situation allows, children should be left with good memories of that parent. If not videotapes, then photos of the parent and children having fun can let those kids look back and say, ‘My mom or dad loved me.’”

At the end stage of an illness, however, parents may not be able to do that without substantial support.

A spouse may be despondent, psychologically spent, unable to face the children, or in denial. Nursing intervention is fundamental to the survival of a family like that.

Too Busy Living to Die

“Although bereavement begins at the time of diagnosis,” says Cassem, “a person is still a being. And if life can take on some meaning, it can still be worth living. Nurses can help to find that meaning.

“Nurses, young and old, have a gift. It is a ‘naked presence,’ a way of bringing calm to a room by sitting silently, knowing what a person needs without a word being uttered, and seeing what meets no other eyes,” says Cassem.

“Healing has been taking place for many generations, even though technology has been around only since the early 1900s. Therefore, it is no great surprise that the patient-provider connection must be the strongest of all medicines,” explains Cassem.

Mary Raju Cole, RN, MSN, FNP, is a contributing writer for Nursing Spectrum.