When It's Time to Say Goodbye

December 30, 2003    By JANE E. BRODY   New York Times

The end of life has become an alien experience for those of
us living in countries where most people spend their final
days in institutional settings. As a result, conversing
with people fast approaching the end of life is foreign for
many people, who may be reluctant to visit dying friends or
relatives because they do not know what to say or do.

There is no better time to learn than now, when more and
more people are dying of protracted illnesses in hospitals,
nursing homes, hospices and, increasingly, at home with
hospice care. While physicians may do an excellent job
treating potentially curable illnesses, after modern
medicine has no further treatment to offer, they often
become tongue-tied and may even abandon their patients,
leaving the task of emotional support to friends and

In his helpful book "I Don't Know What to Say: How to Help
and Support Someone Who Is Dying" (Vintage, 1992), Dr.
Robert Buckman, a medical oncologist at the University of
Toronto, wrote, "One of the biggest problems faced by
terminally ill patients is that people won't talk to them,
and the feelings of isolation add a great deal to their
burden." Talking and listening to a dying person can help
relieve the patient's and the visitor's distress, fears and

Dr. Buckman, who practices at the Toronto-Sunnybrook
Regional Cancer Center, reassures those who are concerned
that talking about dying will create new fears and
anxieties. "In fact," he says, "the opposite is true: not
talking about a fear makes it bigger. Those patients with
no one to talk to have a higher incidence of anxiety and
depression. Bottled-up feelings may also cause shame. Many
people are ashamed of their fears and anxieties."

Keep in mind, too, that dying is a lonely experience. Many
people are more afraid of dying alone than they are of
death itself. By knowing how to act and what to say when
visiting a dying person, you can bring caring and comfort
that eases the person's passage over this most momentous

Patients often take their cues from their visitors. If
meaningful discourse is to occur, the visitor has to be a
good listener. Take off the coat, try to relax, sit down at
eye level with the patient, if possible, and as close as
you would to a healthy friend. Remove obstacles that create
distance or block eye contact. If touching and kissing were
appropriate before the person became ill, they are fine
now, too.

If you deliver a monologue about what you are doing or what
is happening to mutual friends and relatives, you
immediately convey the impression that you are not
interested in the patient's concerns. Instead, focus on the
patient. Try to determine whether the patient wants to talk
and what about, perhaps by saying, "Do you feel like

You might ask, "How are you feeling today?" or, "What can I
get you?" or, "Can I make you more comfortable?"

Offering Encouragement

Let the patient take the lead in
talking about difficult topics and deep concerns, and
encourage continued conversation by saying something like,
"Yes, I understand," or, "Tell me more," or reflecting back
to the patient what you heard.

If the patient starts talking about how bad things are or
says he knows that he is dying, do not contradict him or
change the subject. Instead, you might ask: "How can I
help? Are there things you'd like to say or matters that
worry you?"

Do not be afraid to say that you do not know what to say
and do not become disturbed by lulls in the conversation.
Often just being there and staying close says enough.

Avoid giving advice, unless it is asked for. Do not regale
the patient with tales of patients you heard about who were
saved by a particular doctor or took an alternative remedy
and experienced a miraculous cure. If there really were
miracles out there, they would be in use at every major
medical center. And do not try to compare the patient's
experience with that of anyone else.

If there were enjoyable experiences you once shared with
the patient, you might reminisce about them, even if it
makes you and the patient sad to realize they will never
happen again. It is, after all, O.K. to cry when someone
you love is dying.

It is also O.K. to laugh, if there are things that you both
find amusing. Humor can lighten the patient's emotional and
physical burden by putting things in perspective and
raising the pain threshold.

Expect Fallout

Dr. Buckman points out that, like those in mourning, people
who are dying are likely to pass back and forth through a
series of emotional states, including denial, anger and
acceptance. Although some patients - often those who are
deeply religious and believe in an afterlife - readily
accept the end of life with grace and equanimity, others
may, as Dylan Thomas suggested, "Rage, rage against the
dying of the light."

Anger is often the hardest stage to deal with for those
close to the patient, for anger is often misplaced. As Dr.
Buckman put it, "When somebody in your family or circle is
facing a serious illness and death, the anger that she
feels might really be directed at the illness; it comes out
directed at you because you are the only person around. If
you are aware of the fact that the anger isn't meant for
you personally, then you might be able to respond in a way
different from the typical family-argument style."

If, for example, the patient says, "I feel dreadful, and
you're no help," instead of rising to the bait with, "This
is no picnic, you know," or even, "I'm doing my best,"
(which might prompt a reply, "Well, that's not good
enough"), you could respond with, "How bad do you feel?"
or, "What's bothering you the most?"

You, the future survivor, may also experience anger. You
may be angry about the disruption in your life, the
anticipated loss of your companion or support system or the
seeming unjustness of the illness. In such cases, the
patient may become the target of your anger. Because that
is of no help to either of you, it is best to find a
sympathetic soul who will talk things through with you. By
recognizing the cause of your anger, you may be able to
dissipate or at least redirect your angry feelings.

Some terminally ill patients remain in denial to their
dying day. They may ask repeatedly, "I'm getting better,
aren't I?" or "When can I get out of here?"

There is little to be gained by agreeing with such
optimistic thoughts or directly refuting them. You might
respond with a vague, "Let's hope so," or try gently to
redirect the patient's thinking by asking, "What have the
doctors told you?" or: "What if you don't get better?
Should we make some plans just in case?"

Finally, you may be faced with a patient in despair who has
lost all hope. Avoid making promises that cannot be kept,
like, "Surely you'll feel better tomorrow." Instead, try to
counter despair by reassuring the patients that everything
possible will be done to assure their comfort, including
relief of pain, and that no matter how bad things get, you
will always be there.