When Someone You Love is Terminally Ill
By Robert Hromas, MD
Published in Healthwise, Fall/Winter 1996
There are ways to help your terminally ill loved one, which
may actually add value to your relationship before this is
As a doctor who specializes in treating cancer, I’ve taken care
of hundreds of seriously ill patients. Some of them recovered, thanks to
remarkable new treatments that have been developed in the past few
years. Sadly, though, many of them didn’t get better but ended up
terminally ill – a phrase that usually means that regardless of
what we do medically, the patient will not live more than a few
No matter how many times I have to tell a patient (or family) that
recovery isn’t likely, it still feels bad. There’s no use
lying about it – dying, or helping someone who is dying,
But I chose this field partly because I had seen how devastating
terminal illness can be, even for the survivors. So I wanted to do
everything I could to help people not only survive but actually change
for the better, while at the same time helping their loved one face the
final horizon with courage, grace, and peace.
Speaking from experience…
Before I get into how this can happen, let me assure you this is not
just theoretical advice based on lectures, journals, and detached
observation. Even physicians’ relatives get sick, and sometimes
there’s nothing more that can be done. Not long ago, my wife,
Shari, got the phone call we hoped would never come. Her mother, who had
had surgery followed by radiation for localized breast cancer several
years earlier, had now developed a mass in her abdomen.
“The surgeon thinks it might be the cancer returning,”
Shari said, as she laid her head on my shoulder. “I feel lost,
like a wind is sweeping me away.”
With my experience, I should have been better prepared. But we both
felt destabilized by the news, as if the ground were rocking under our
feet. The shock, the immediate sense of loss that accompanies a terminal
diagnosis, is always greater than you imagine it could possibly be.
The good news, if you’re facing something like this right now,
is that you can re-establish a foundation on which to stand during this
storm. There are ways to help your terminally ill loved one, which may
actually add value to your relationship before this is over. Not only
that, but there are also ways to help yourself make it through this,
physically, emotionally, and spiritually.
It’s a marathon, not a sprint
Quite often, a terminal illness lasts weeks or even months. This
interval between the diagnosis and when your loved one passes away can
be a grueling, exhausting experience. In some ways, it is like a track
race, where there’s a starting point and a finish line. And when
you’re out there running, the pain of it can simply fill your
entire consciousness. You wish it would end so you could stop running
before you collapse…but on the other hand, you also want the race
to keep getting longer.
Most cases I’m involved with are marathons, not sprints.
However, I’ve seen a lot of family members hit the ground running
so fast that toward the end of the patient’s race, they had
nothing left to give.
That’s what happened with Ellen, whose son, Tony, had acute
leukemia. Ellen totally dedicated herself to staying with Tony. For
weeks, twenty-four hours a day, she maintained a vigil by his bed in the
hospital. She slept poorly and ate irregularly – often just
grabbing some leftovers from his tray. If by force of sheer effort she
could make her son well again, she was going to do it. Nothing would be
left to chance.
But induction therapy for leukemia is a long process. Ellen stopped
taking care of herself, becoming more and more disheveled. She lost
weight. She became agitated with any perceived setback, regardless how
minor, and eventually became more of a detriment than a benefit to Tony.
In the end, she broke down completely and had to take a lot of time away
from the hospital when Tony needed her more than he had earlier.
No one doubted Ellen’s sincerity or depth of commitment to her
son. But, by sprinting, Ellen used up her emotional and physical
reserves before the end of Tony’s race. Driven by her need to
approach Tony’s crisis on her own terms, she sometimes demanded
that we do things for her son (or that he consent to things) that he
really didn’t need or want.
A sprinter can be intrusive and demanding. If you really want to help
your terminally ill loved one, find out first what kind of race it will
be, as well as how the patient wants to run it. Then make it clear that
you’ll be there in the end, still alongside, still available, with
something to give.
Once is hard enough
After a “terminal” diagnosis has been given, one common
mistake my patients and their families make is dwelling too much on the
difficulties of the not-too-distant future. This threatens whatever
happiness may still be possible. Worse, it has the net effect of putting
everybody through the loss twice.
Sometimes the patient does this to himself. Charlie, for example,
kept asking me how he would die. “Will it be painful?” was
one of his frequent questions. I told him I could almost certainly
relieve any pain he may have, but I could not tell him exactly how he
would die. For Charlie, however, his own dying became an obsession. He
read a great deal on the subject. He talked to a number of physicians.
Instead of spending time on all the good and pleasant things still in
his life, he spent his last few months thinking about dying.
Sometimes, family members choose this approach. Joe, a
patient’s husband, kept repeating the same questions about his
wife’s illness. This started to irritate me, until I realized that
Joe was terrified of Mary’s impending death. He loved her so much
that he could not imagine life without her, and he was trying to come to
grips with that idea. But by approaching it in this way, Joe was missing
the pleasant things they could still share with each other. In addition,
it forced Mary to dwell on what was happening to her, which she might
not have wanted to do.
I believe that patients and their families do better if they do not
think too far ahead. Obviously, there must be a balance here. Some
things must be planned, and certain topics are unavoidable. However, by
dwelling on all the hard things in the future, you end up living them
twice, once in your thoughts and then again when the actual event
What you should expect
Most terminal patients and their families go through three common
Unreality. It’s very hard, at first, to
believe what you’re hearing and to integrate the information into
your life. Some people feel set adrift emotionally. Others feel
light-headed, even giddy. I expected this, they think.
It’s not so bad. Others don’t feel much of
anything, which is there way of avoiding the full impact of the bad
There’s no right or wrong here, just individuals grappling with
one of life’s hardest facts: Soon somebody they’ve counted
on will be gone. At first, it’s a vague idea that just
doesn’t seem to fit. This phase sometimes lasts months; some
people never cope with it. However, until you get past it, you
won’t be able to offer much practical assistance because you
won’t be able to think realistically about what’s
Grieving. The fact that your loved one is dying
impacts almost everything you do. It is like trying to fit a bulky piece
of furniture into a room that is too small. Everything else has to be
shifted around. It can even dominate your thoughts to the exclusion of
other, perhaps equally important, things.
The sadness and sense of loss are normal. You hurt because
you’re realizing what the loss will mean. You are coming to grips
with what your life will be like without the other person.
Yet this phase should not be permanent either. People caught in this
phase are in danger of being so absorbed by the illness that other
issues, or more importantly, other people, suffer. I remember a little
girl, the sister of a comatose, dying bone marrow transplant patient,
going up to her mother and saying, “Mama, I’m not
sick.” The parents had become so preoccupied with their feelings
about their son’s impending death they had been neglecting their
Perspective. In this phase patients and their
families are often able to view the event as if from a distance, in the
grater context of all the good things they have shared in the past. They
make peace with each other for past errors. More importantly, they often
make peace with themselves. They stop blaming themselves for
imperfections in the relationship. They try to live out, as fully as
possible, whatever time remains. They come to see dying as a part of
living; it doesn’t have to ruin the memory of that loved
I’m not suggesting that you try to look beyond the immediate
struggle, as if doing that could protect you from its impact. This
experience will change your life irrevocably. But your loved one would
want it changed for the better, not worse. You can help this happen by
choosing to carry with you the good qualities of your loved one,
expressing these qualities in your relationships with other people.
What you can do for your loved one
Families often feel helpless before the onslaught of fatal disease.
But there are at least four ways to make the experience easier for the
1. Build the person’s self-esteem. Dying is
degrading. It gradually tears down what was once a marvelous physical
machine. This can be very depressing. Doubt of self-worth creep in to
the point that the person may just want to die and get out of the
You can offset this by giving value to past events and relationships,
praising previous actions and accomplishments. Don’t criticize
past mistakes, however, or repeat old arguments. Reconciliations are
important to a dying person – and to those who remain behind.
These are achieved not by winning old battles but by confessing your own
responsibilities and forgiving other for theirs.
People are often abandoned as they die, and your loved one may have
seen this happen to friends. So, one of the most significant gifts you
can give the patient is the assurance that you will be there as long as
you’re needed. Don’t make empty promises or commitments you
have no intention of keeping. But you can offset the person’s
fears by being there, being cheerful, and by asking questions that will
help your loved on express how he or she is thinking and feeling about
what is taking place. Avoid judging what is said or comparing the
feelings to anyone else’s (including your own). In any way you
can, honor the person, for it is always heroic to face death
2. Create periods of grace. One of the best ways to
redeem the time left for you and your loved one is to do things that
will help you both escape the weight of the illness, even if it means
pushing a wheelchair around. Go shopping, to movies, to the library, to
concerts, to athletic event – wherever the patient wants to
Taking one more vacation together is not as frivolous an ideas as you
might think, especially if your past vacations have been highlights of
your life together. Certainly there may be risks involved, and you
should talk these over with your loved one’s physician. But the
doctor will probably be far more supportive of this idea than you might
3. Help with practical decisions. While it is best
not to dwell on the likely outcome of the illness, some things must be
addressed. For example, your loved one should make a will, if this
hasn’t been done already. This is a delicate subject, perhaps one
that a trusted adviser, outside the family, might be asked to pursue.
The important thing is not who broaches the matter, but that it gets
done while the person is still capable of dealing with his or her
You can help in other practical ways. Insurance can be complex and
sometimes capricious. Filling out forms, dealing with insurance agents
or hospital billing personnel, and calling to obtain needed medical
information are all ways to help your loved one get through this
Another important consideration is whether your loved one wants to
make a living will, covering such things as whether or not
cardio-pulmonary resuscitation (CPR) is desired should the heart
A living will also may specify what other treatments the patient
wants or doesn’t want when death seems imminent. Typically, these
include directives about extraordinary means of sustaining life, such as
the use of a ventilator, certain medications, or even surgical
intervention. Some living wills stipulate that food and water not be
provided by intravenous catheter or nasogastric tube if these would only
prolong the dying process. Since state laws vary widely on what living
wills may or may not include, you should get legal advice about
4. Provide physical assistance. Most families of
terminal patients want to help, physically, but don’t know where
Depending on the circumstances, however, you really don’t have
to look too hard to see what needs doing. For instance, are there kids
who need to be taken care of? Does the house need cleaning? Would
prepared meals be helpful? Put yourself in that person’s shoes.
What would you need to have done if you were that sick?
Don’t intrude, but on the other hand don’t wait to be
asked. Instead, volunteer by giving a specific time and place and way
you intend to help. You might even express thanks for the
You can also specifically care for your loved one’s health,
even if you are not a health care worker. Making sure that medication is
taken, ensuring that good nutrition and hygiene are maintained, and that
the patient exercises can all make a difference in how long he or she
will live. For example, since most infections in cancer patients come
from organisms in their own body, good hygiene is extremely
Things you can do for yourself
Just as a marathon runner needs to pace himself and replenish lost
nutrients, you must do several things to remain effective in caring for
your loved one.
1. Maintain good eating and sleeping patterns. You
can only give as good care for a loved one as you give to yourself. Take
time to eat nutritious meals, and sleep on a regular schedule. You will
be more cheerful and better able to perform undesirable tasks.
2. Schedule your own family times. Don’t
neglect the rest of your family while a loved one is dying. Schedule
family time that is inviolate. Your larger family is your best source of
support. If they are unhappy, it will be doubly difficult to care for
your dying loved ones.
3. Take regular breaks. You will do a better job if
you rest your spirit occasionally and focus your attention on something
you enjoy, such as a hobby or sport. Physical exercise is ideal –
playing golf or tennis, swimming, bicycling, or walking. Exercise burns
off some of the adrenaline generated by stress. However, you can also
relax by reading, shopping, visiting friends or museums.
Facing the anxiety
The thought of dying makes everyone anxious. When a person is
terminally ill, we come face to face with the possibility of our own
death. In a way, when our loved one is dying, some part of ourselves is
dying, too. Death forces us to deal with whether or not there is
more to life than we can see. We are conscious of a physical reality
called life, but we also can imagine another reality –
I have found that dying cancer patients have one of three
perspectives on their death. They may believe that death is the end, and
after that there is nothingness. Although this perspective is widely
accepted intellectually, it is by far the least common attitude I
witness when people are actually facing death.
The second perspective on death is one of merging with an
all-encompassing god, from whom we sprang and into whom we shall return.
This attitude has its origins in Hinduism and owes its popularity in
this country to the New Age movement.
The third perspective maintains the person’s individuality
beyond this life. Yes, there is loss for a time, but the confidence of
spending eternity with a personal God because of faith in Jesus Christ
can overcome that sadness with joy. The expectation of renewing
relationships with those who have gone before is another factor that
helps overcome the person’s present struggle.
Even if I wasn’t a believer myself, my observations as a
physician prove that this view of dying (and living) is the only one
that can fill the void in our hearts and relieve our anxiety about
Bob Emily knew he was going to die from his relapsed leukemia. In one
of my last visits with him, I asked him how he was feeling
“If I did not have the Lord Jesus,” he told me, “I
would be scared out of my wits.”
So would I, Bob, so would I.