What are the tasks of grieving, and what does it feel like?

99. What are the tasks of grieving,
and what does it feel like?

According to J. William Worden,1 who has written
extensively about grief, there are four principal tasks
that are essential to the mourning process: (1) accepting
the reality of the loss; (2) working through the pain
of grief; (3) adjusting to life without the deceased; and
(4) “emotionally relocating the deceased and moving
on,” which does not mean forgetting the deceased, but
rather finding “an appropriate place” for them “in their
emotional lives—a place that will enable [those left
behind] to go on living effectively in the world.”

Grieving is painful. People in grief can experience feelings
of sadness, anger, guilt, and/or anxiety, as well as
physical sensations, such as hollowness in the stomach
or tightness in the chest and tearfulness, among others.

There can be a variety of changes in the way they
think and act: confusion, preoccupation, longing for
the deceased, searching and calling out, sleep and
appetite disturbances, social withdrawal, and sometimes
restless hyperactivity. These reactions will normally
diminish and pass with time. Talking with your
family and friends, a member of the clergy, or a grief
counselor can help you manage your grief.

In Worden’s view, mourning the loss of a close relationship
requires at least a year, possibly two, though
this varies greatly depending on the individual and
cultural background. Mourning is in a sense “completed”
when the bereaved person can think of the
deceased without pain and can “reinvest his or her
emotions back into life and in the living.” However,
you should keep in mind that everyone goes through
grief and mourning in very individual ways. No one
can put a time limit on how long you grieve, or the
various emotional reactions you may experience,
which are often likened to a roller-coaster ride. Nevertheless,
if you experience grief that is so intense that
it leaves you feeling overwhelmed or unable to cope,
or lasts for what feels to you to be an overly long
period of time, your grieving process may require the
intervention of a grief specialist, to help you work
through the tasks of mourning. Long periods of grief
can lead to clinical depression, so talk with a professional
if you are concerned about the depth or breadth
of your grief process.

As a caregiver, you may feel relief now that your caregiving
responsibilities have come to an end upon the
death of your loved one. For some, these feelings can
lead to further feelings of guilt beyond those normally
experienced by survivors. Others become anxious,
because in addition to the loss of their loved
one, they are losing their roles as family member and
caregiver that had deeply defined them—and their
lives—for a long period of time. You are now
embarking on your own journey of healing. Be kind
to yourself, use the techniques and strategies we’ve
provided in this book to help you cope, and don’t forget
to reach out to others to help you find your place
in the world again.

What do I do now that my loved one has died?

98. What do I do now that my loved
one has died?

What you have to do afterward depends on whether
the death occurs in the hospital or at home. In the
hospital, the body will be moved to the morgue and
kept there until you have made arrangements for its
disposition. This doesn’t have to be decided immediately.

Although there are public health laws that limit
the number of days the body can remain there, most
hospitals give families three days to a week to get in
touch with a funeral home or some other service.

Funeral homes will then contact the hospital and
make all the arrangements for transporting the body.
If the death occurs at home, you do not have to call
the police, but you should call the hospice program or
the primary physician. You can then contact the
funeral home or crematorium, which will then arrange
to have the body transported to their facility.

After you’ve informed family members and friends of
what’s happened, you will also need to contact the
attorney, financial planner, and/or accountant to begin
settling your loved one’s estate. Other business matters
that will need attending to include: contacting the
bank to close accounts and notifying the Social Security
Administration, Department of Veterans Affairs,
insurance companies, and former employers and/or
unions, in order to apply for any benefits that you or
other family members might be entitled to. These
agencies will ask you for copies of the death certificate
for verification, so be sure to obtain several duplicates,
either through the funeral director or the health
department.

What do I do now that my loved one is dying?

97. What do I do now that my loved
one is dying?

As difficult as it is, information on the dying process
will help you to prepare for the final stage of your loved
one’s life.

Nancy’s comment:

As family members gather to say goodbye and sit by the
patient, a living eulogy can allow the patient to feel that he
or she has lived a valued and important life. Remembering
and sharing memories about the good times accomplishes
this task, and sharing even the tough times helps the dying
with the difficulty of saying goodbye. Even when lives are
fraught with misadventure, everyone has some good that
can be encouraged, discussed, and honored.


You may now have reached the point where your loved
one is “actively dying,” a process which, without heroic
medical intervention, will result in the body ceasing to
function. If you haven’t already done so, ask the doctors
what you can expect to happen physically. As difficult
as it is, information on the dying process will
help you to prepare for the final stage of your loved
one’s life. Knowing in advance what symptoms can
occur, such as pain, shortness of breath, or breath
sounds, gives you the opportunity to discuss with the
medical team the treatments to make your loved one
most comfortable. Being informed also helps ensure
that these treatments are provided in a timely manner
later, particularly during times of crisis.

Managing the practical aspects of care for a dying person,
whether in the hospital with the medical team or
at home through a hospice program, can be looked at
partly as another test of your problem-solving skills.

But the greater part is the emotional challenge of
managing your fear and grief in the face of imminent
loss. On the one hand, you are trying to provide your
loved one a safe passage. You are looking after this person’s
physical comfort, reassuring your loved one that
he or she is not alone, maintaining his or her sense of
dignity, assisting him or her in defining and expressing
whatever thoughts that he or she might have—and
want to share—about the meaning and value of life in
his or her final days. On the other hand, you are saying
goodbye to each other, beginning that process that
allows both of you to let go of one another.

The hard part is staying close to the dying person—
that is, remaining practically and emotionally
involved—but knowing when to give him or her permission
to go, so that he or she does not feel either
guilty about dying or abandoned by you. The actual
goodbye can be phrased in different ways, but as Ira
Byock, a well-known expert on dying suggests, there
are five things that people may want to say in one way
or another: “Forgive me;” “I forgive you;” “Thank you;”
“I love you;” and finally, “Good-bye.”

Even though we talked about it, I don’t know if I can make a “life or death decision” for my husband.Would it be so terrible just to let nature take its course?

96. Even though we talked about it, I don’t
know if I can make a “life or death decision”
for my husband.Would it be so terrible just
to let nature take its course?

Remember, by stopping life-sustaining treatment,
you are not killing the patient.
The cancer and/or underlying medical condition is
what causes the person’s death.

Surrogate decision makers who agree to a DNR order
and/or to stop life-sustaining medical intervention
may feel guilt or that they are “giving up,” even though
they are acting according to the patient’s previously
stated wishes and/or in the best interests of the
patient. Other difficult decisions for surrogates include
asking for more pain medication for dying patients
with extremely advanced disease, since the amount of
medication required to alleviate their symptoms can
make them less alert and, in rare circumstances, hasten
a person’s death by a short amount of time. This can be
extremely distressing to the people making medical
decisions for their loved ones.

People who do not react well to a crisis may respond in
two basic ways. One is to make rash decisions based on
blind emotion rather that reasoned thought. The other is
to wait and do nothing, which is often the result of
“paralysis by analysis.” The latter choice is more common
and may seem reasonable given what we have previously
said about collecting as much information as possible in
order to make an informed decision. However, by waiting,
you may be prolonging the patient’s status in a state
of indignity. Furthermore, prolonging treatment for a
patient who previously stated that she did not want to be
treated or be on life support in this condition is not ethical.

If you come to an impasse, try to limit yourself timewise:

Ask the doctors how long you have to make the
decision, and if it seems reasonable, try to stick to it.Talk
to involved family members and others whom you think
can help you make the best decision.

For some people, the underlying issues are that they just
do not want the responsibility and/or they simply cannot
bear to let go of their loved one emotionally.

Remember that your decision as a proxy needs to be
based on the patient’s preferences as you best understand
them. If these preferences are not clear in your
mind, then speak with other people who might have
insight into them: friends, family, and the doctors.

Patients will often have a discussion of this sort with the
medical team when family isn’t present precisely because
they don’t wish to upset them. Many oncology professionals
have had in-depth conversations with patients
about their wishes regarding life-sustaining treatment
and have helped patients relate these wishes to their surrogate.

If you do agree to a DNR order or an increase in
a medication dosage, you probably won’t be asked to
sign anything. This is because these orders come from
the physician, not from you. It is they who are directing
the course of care, and thus sharing the responsibility
for any decision with you. If you have concerns or questions
about end-of-life care issues, speak with the physician.

Furthermore, ethics consultants, patient advocates,
or social workers are available for extra guidance. If the
situation reaches an impasse, all hospitals are required to
have an ethics committee where you, the doctors, and
other involved people can meet to discuss solutions.

Remember, by stopping life-sustaining treatment, you
are not killing the patient. The cancer and/or underlying
medical condition is what causes the person’s death.

What is a DNR order?

95. What is a DNR order?

DNR stands for “do not resuscitate” and is a common
component of advance directives, including a living
will. A DNR order dictates the steps to be taken if a
patient is found to be minimally responsive with minimal
life signs. It mandates whether medical steps, such
as intubation or cardiopulmonary resuscitation (CPR),
should be administered if a patient goes into cardiac
arrest. The Patient Self-Determination Act enacted in
1991 gives all patients the right to accept or refuse
resuscitative efforts in accordance with state laws or
statutes.


Do not resuscitate order (DNR) = Can be a component
of an advance directive and a living will; specifies the 
medical steps to be taken in the event the patient is found 
to be minimally responsive with minimal life signs.


The DNR order is a difficult issue for patients, families,
and healthcare providers. It is a potentially emotional
topic and decision, and may generate conflicts
between/among the people involved if there is disagreement
about the right course of action. For example,
some patients and family members may believe
that, under all circumstances, all efforts should be
made to prolong life and would therefore refuse a
DNR order. Other people may believe that death
should occur more naturally, without life support and
other medical interventions, and agree to a DNR
order. Caregivers and family members may certainly
express their beliefs; however, individual feelings and
conflict should be tempered by an understanding of
the patient’s true wishes.

To protect themselves with advance directives, patients
should be encouraged to initiate a discussion of their
wishes with their healthcare team and their family, and
particularly with their physician(s) and their healthcare
proxy—not only so that their wishes are upheld, but also
so that the doctor and the proxy understand their wishes.

Having these difficult, but meaningful conversations in
advance removes a lot of the burden of making these
decisions from the family and friends. They will not have
to guess or speculate about the patient’s wishes.

Additionally, it is important to understand that a
DNR order does not mean the withdrawal of care.

Patients will not be segregated into a separate section
of the hospital and neglected while “waiting to
die.” Their medical needs such as pain control or
other supportive medical care will be provided. The
DNR order comes into play only if a patient requires
resuscitation.

Nancy’s comment:

A copy of the DNR, healthcare proxy, and/or living will
statements should be kept in a visible and accessible place in
the patient’s home. Should the caregiver or someone else
find the patient dying or dead in the house, you should
know that a 911 call will bring EMT personnel whose
task is to revive the patient and provide life support while
transporting him or her to the emergency room—exactly
the opposite of what the DNR and most living wills are
intended to convey. Even if the patient is taken to a hospital
that has treated him or her before—which isn’t guaranteed
in an emergency—ER personnel don’t necessarily have
access to the patient’s chart in the doctor’s office or hospital
records and probably will not check for a DNR order. If the
caregiver doesn’t have a healthcare proxy document in hand
and can’t immediately produce the living will or DNR
documents, he or she will be unable to insist that the hospital
personnel do not attempt resuscitation. So it’s very
important to make sure that these records are kept in a
prominent place if the patient doesn’t want resuscitation or
heroic measures.

What is a healthcare proxy and living will?

94. What is a healthcare proxy
and living will?

The death process in the United States has been dramatically
altered in the face of new medical technology
that saves and sustains life. With these advancements
come difficult decisions about when to use, and withdraw,
such treatments. Even with the best care available
today, there may come a time when your loved
one’s cancer has progressed beyond conventional treatments.

During this time, because of cancer spread to
the liver, lungs, or brain, he may not be mentally able
to make decisions regarding his own care. Family
members (or another person previously designated)
will then be asked to make medical decisions on the
patient’s behalf.

In order to facilitate the decision-making process and
address the communication, emotional, and sometimes
ethical issues that can arise, a legal system was established,
which varies from state to state. The general
term for the documents is an advance directive, placed
in the patient’s medical record, which describes his
wishes regarding various life-sustaining medical interventions
in the event that the patient cannot communicate
his wishes directly. This allows a person to take
control of his care and preserve his dignity in the event
of complicated situations.


Advance directive = A document in the patient’s record
describing his or her wishes regarding various life-sustaining
interventions in the event the patient cannot communicate
directly.


Patients can assign a healthcare proxy to help make
medical decisions if they are too debilitated to do so
themselves. A healthcare proxy (sometimes called a
medical durable power of attorney or a healthcare agent)
is an officially designated medical decision maker (identified
by a document or verbal identification) who acts
on the patient’s behalf if he becomes unable to make
medical decisions (due either to temporary situations or
to enduring ones, such as being permanently comatose).

Many states have family consent laws, establishing a
clear succession of family members to be identified as
surrogate medical decision makers, if a patient has not
otherwise named and documented a proxy. If you live
in such a state, it is particularly important that the
patient legally identify a healthcare proxy if he does not
want the state-designated family member to be his surrogate
decision maker. For example, the laws usually do
not recognize non-married partners (even for couples
who have been together for a long time) as part of the
succession. Instead, a parent or adult child, or a more
distant relative could be designated as the surrogate and
make crucial decisions about a person’s medical care.

For this reason, it is often best if the proxy is someone
with whom the patient has a close relationship and who
is aware of his feelings about extreme life support measures
in the setting of a terminal disease. In states that do
not have family consent laws, such as New York, it is
particularly important that patients have identified a
healthcare proxy and discussed their wishes with that
person, since a family member may not have the legal
right to make decisions on their behalf without having
been formally identified as the healthcare proxy.

Patients can develop a living will describing their
wishes regarding specific medical interventions toward
the end of life and can be very specific regarding individual
therapies that the person either desires or does
not desire to have. The use of prolonged ventilation
with a respirator, the placement of tubes for artificial
feeding, and the choice for cardiopulmonary resuscitation
(CPR) are common topics for clarification in a
living will. The information is documented in the
patient’s medical record and informs the decisions to
manage his care should the need arise. However, it is
still important for a patient to identify a surrogate
decision maker/healthcare proxy and discuss his or her
values and wishes with the surrogate and physician.
Living wills can help guide doctor and family decisions,
but rarely are they specific enough to apply to all
possible medical circumstances that may arise.

Living will = Legal document that specifies a patient’s
wishes in the event he or she becomes mentally
incapacitated.

Is making “quality of life” the goal going to shorten my husband’s life?

93. Is making “quality of life” the goal going
to shorten my husband’s life?

“Quality of life” can mean different things to different
people. For some, simply being alive is worthwhile. For
others, they expect a certain level of ability to function,
both physically and mentally, in order to retain their
sense of dignity. When the medical team shifts its
focus to comfort care, saying that there is little
prospect for curing the cancer, there may still be other
treatments they can employ to both fight back the
cancer, at least temporarily, and/or relieve the symptoms
of the disease. In some cases, managing a person’s
painful or uncomfortable symptoms, in fact, results in
living longer than if these treatments were not provided.

Therefore, focusing on enhancing quality of life
will not necessarily shorten a person’s life.

The decision of whether to pursue such treatments, however,
becomes more complicated when the treatments
carry with them the risk or likelihood of adverse side
effects. What if this chemotherapy makes the patient
feel sicker even though the growth of the tumor is
slowed? What if whole brain radiation therapy results
in memory loss and confusion even though it relieves
the patient’s headaches? In these cases, electing not to
have the treatments can result in a shorter time left to
live. However, if there is a trade-off between quality of
life versus possibly extending life, one can only decide
for oneself where the tipping point lies and when to
forego further treatment. People with cancer individually
choose their own paths to follow. Helping them to
define what quality of life means to them, to articulate
their hopes and fears about the final stage of their life,
and to make sure they are getting enough accurate
information about their options to make an informed
decision provides important support.

What is hospice?

92. What is hospice?

Accepting hospice care will not hasten your
loved one’s death.His or her symptoms will be better
managed, so that you can spend more quality time
with him or her and enjoy the time you do have left as
much as possible.

When discussing end-of-life decisions, medical professionals
may use the word “hospice” and sometimes
assume that you know what this means. Hospice is a
type of care focusing on improving or maintaining
quality of life, as opposed to extending life, when a
person is no longer seeking treatment to cure his or her
cancer. Hospice can be provided either at home or at
an inpatient facility. Hospice focuses on symptom
management, and this means alleviating the pain, nausea,
and general distress that is common for people
during the dying process. Hospices are often staffed by
nurses, doctors (who can adjust pain medication),
social workers, psychiatrists, chaplains, and other support
staff. You may read more about hospice from the
resource list in the back of this book. The American
Cancer Society has very helpful information on its Web
site, as does the National Hospice and Palliative Care
Organization (NHPCO). If you believe the time is
right, you may ask your doctor about hospice care if he
or she does not initiate this discussion with you.

If hospice care is appropriate, and you and your loved
one choose this type of care, hospice services will provide
support to both patient and caregivers. We have
had a few patients or caregivers state they were afraid
of hospice care, thinking that it meant they had given
up all hope. Do not think of hospice in this way.

Accepting hospice care will not hasten your loved one’s
death. His or her symptoms will be better managed, so
that you can spend more quality time with him or her
and enjoy the time you do have left as much as possible.

We have seen many patients choose hospice care,
which relieved their symptoms so well that they were
able to continue with daily activities, such as going out
and socializing, which they otherwise probably would
not have been able to do. Also, a person does not have
to be in the final stages of dying in order to be eligible
for hospice, particularly home hospice. In fact, the earlier
a patient receives these services, the more likely the
patient and the family will benefit. Furthermore, the
patient may be able to receive palliative treatments
(such as chemotherapy or radiation therapy) and still
be eligible for hospice. Ask your social worker or doctor
to investigate this option.

Even though my husband is still alive, I find myself thinking about my life after he dies. Somehow, this doesn’t seem right—is it wrong to have these kinds of thoughts?

91. Even though my husband is still alive,
I find myself thinking about my life after he
dies. Somehow, this doesn’t seem right—is
it wrong to have these kinds of thoughts?

Some people, when faced with the impending loss of a
loved one, prepare themselves by imagining what life
will be like after the loss and how they will react. They
can even experience emotions similar to those they
would feel if their loved one had already passed away.
This preparation, referred to as anticipatory grief by
some, may serve to lessen the distress of bereavement
later on and to facilitate the adjustment process.


Anticipatory grief = Beginning to experience the loss of
someone before the person actually dies.


You should not judge yourself for having these kinds of
thoughts and feelings. But be aware if they are affecting
the way you think of your husband in the present
here and now and how you act toward him. There is
the possibility of separating yourself too early from
your loved one through anticipatory grief. Your husband
still needs you, and there are still meaningful opportunities
to experience and celebrate the value of your life
together and your relationship with one another.

Preparing yourself should not leave you emotionally
distant from him.

The doctors say there is nothing more they can do to treat my wife’s cancer.What do I do now? Just give up?

90. The doctors say there is nothing more they
can do to treat my wife’s cancer.What do I do
now? Just give up?

Remember that you always have the option of
seeking a medical opinion from another physician.

This time period is often filled with important decisions.
Make sure that you fully understand what the
doctor is telling you. He or she may not be able to give
you a specific prognosis, but make sure that you are
clear about what the doctor is saying about your wife’s
condition. Why, exactly, is there nothing left to do? If
your wife is interested in getting more treatment, be
sure to ask about any other possible treatments available,
including experimental treatments. Remember
that you always have the option of seeking a medical
opinion from another physician.

After investigating the options, your wife may decide to
discontinue treatment, which is sometimes the hardest
decision for patients, and physicians, to make. Physicians
use different words (“palliation,” “supportive care,”
and “comfort care”) to represent a shift from focusing
on curing the cancer to treating the symptoms of cancer
during the later stages of the disease process. Palliative
care sometimes involves chemotherapy, radiation therapy,
or even surgery to help alleviate such symptoms.
Supportive care and comfort care also refer to symptom
management, often with the use of medications, and
may include hospice care.


Supportive or comfort care = Focuses on treating
the symptoms of disease in the later stages of the terminal
disease process.


Ending treatment that has not cured the cancer is
often a shock for patients and family members. For
example, you may feel hopeless, overwhelmed, and/or
angry, and these feelings may be directed at the doctor
for not being able to cure your loved one, or at the
patient—or yourself—for not “fighting hard enough.”

These are all normal reactions. Emotions such as sadness,
loss, and despair sometimes follow. Other people
may have prepared themselves for when this time was
coming and may be more accepting of the impending
death (particularly if they discussed these issues
beforehand with their support system members).

During this time, people in the later stages of the illness
often focus on making their last days as positive as
possible. If you and your loved one are in this situation,
there are some questions to ask her, the answers
to which may help both of you better understand how
each of you feels and what her wishes are at this time.

Ask your wife, “Do you want to be in the hospital during
your last days? At home? At a hospice facility? Do
you want to be pain free? Whom do you want to be
with you? What do you want to do before you die?
Express your feelings for your loved ones? Make
amends with someone? Pray and focus on your spirituality?
Do you have any specific religious tasks you want
to complete? Do you believe in an afterlife? If so, what
do you imagine? Is it fearful or comforting to you?”

Answering these questions is difficult. Discussing
them with others may be more so. This is a time when
many people look back on their lives, focusing on their
relationships, the meaning of life and death, and possibly
their relationship with God. Your loved one may
struggle psychologically with understanding and coping
with her death. She may also struggle to help your
family cope with death. You, on the other hand, may
or may not understand all her decisions. Your loved
one may have philosophical questions that cannot be
answered, or she may feel anxious about leaving loved
ones. All of these issues and more may arise. Often,
meeting with a chaplain or spiritual advisor, social
worker, or the doctor can help patients and family find
answers to questions and reduce distress about common
concerns that arise during the later stages of life.

Is thinking about death bad luck? Although he doesn’t talk much about it, I know my husband has been thinking about death and dying since the doctors first suspected he might have cancer.How much is normal?

89. Is thinking about death bad luck?
Although he doesn’t talk much about it, I
know my husband has been thinking about
death and dying since the doctors first
suspected he might have cancer.How
much is normal?

Mark’s comment:

People who think of death as a bad thing don’t understand
that it can be a release sometimes—if your loved one’s body
is so severely damaged by disease, the spirit is relieved of
that hurt when it’s set free by death. But thinking about
death is not the same thing as obsessing about death. If
death becomes an obsession, if you think about it and
worry about it all the time, then you may need to get
counseling.

When someone is faced with the news that he or she
has cancer, frequent thoughts of death are common.
Death is something that, at least in the United States
and many Western cultures, people often try to forget
about; they simply deny that it exists. A cancer diagnosis
cuts right through this denial, and fears of mortality
flood through. Some people are more prepared for this
realization; others are not. For those who are less prepared,
this may be the first time in their lives that they
have truly realized they are mortal. Thoughts of death
may include the following:

1. Thinking about one’s own impending death and
what it will be like

2. Remembering past experiences with death and
losses

3. Paying more attention to death in the news
or books

4. Talking more about it to family, friends, or religious
advisors

5. Worrying about pain and other medical aspects
about the dying process

Ironically, understanding one’s own beliefs about death
can be helpful to coping. In order to understand himself
better, your husband should pay attention to when he
thinks about death, what he thinks about, and how
he feels about these thoughts. Let him know that if he
wants to discuss these issues, he should find someone
with whom he can talk openly about death and dying.

You may not be that someone, at least right now, for various
reasons. He simply may not be ready to talk with
you about it, or you may not be ready to hear it. Don’t
take it personally if he chooses not to discuss these
thoughts with you now. It may take time and practice
before he is able to discuss these things with someone
very close. Also, people close to patients sometimes misinterpret
discussions of death as “giving up” or find it too
much to handle, in which case someone more objective
to speak to, such as a religious advisor, a doctor or nurse,
or a counselor, may make it less stressful for both of you.

Thinking about death neither makes it come faster nor
is it bad luck. However, if your husband finds himself
thinking about death and dying for long periods of
time (for most of the day, many days in a row), or if he
is thinking about taking steps to end his life, contact
his doctor or a mental health professional immediately.

Call 911 if he has plans to hurt himself or others.
Depression and other psychological issues can make
thoughts of death overwhelming.

Additionally, people who are experiencing various
physical symptoms or side effects may misinterpret
these experiences, believing that they are actually dying
when, in fact, they are not. Pain and other factors altering
quality of life are common and may precede
thoughts of wanting to die. However, when these medical
problems are solved, thoughts of death or wishes to
die usually subside as well. Therefore, if your husband is
comfortable, encourage him to talk about his thoughts
and feelings about dying with his family and/or with
the medical team so that he understands these thoughts
are normal. Sharing feelings can be helpful to him and
may also help you, the rest of the family, and the medical
team better understand what your husband is experiencing.

When all of you understand him better, you
can help him more effectively in his time of distress.

Is my family member protected from workplace discrimination?

88. Is my family member protected from
workplace discrimination?

Legislation, such as the Americans with Disabilities
Act (ADA), protects disabled people from certain
types of workplace discrimination. A person with cancer
or a history of cancer may be protected under the
ADA. However, the ADA is complex, applies only to
companies that meet specific criteria, and has other
limitations. Other federal laws (such as the Federal
Rehabilitation Act, the Family and Medical Leave
Act, and the Employee Retirement and Income Security
Act) and state laws also exist to protect employees
with health issues. Aspects of these laws likewise pertain
to health insurance coverage, particularly the
Comprehensive Omnibus Budget Reconciliation Act
(COBRA), which makes group insurance policies
provided by certain employers available to employees,
even those who have quit, been terminated, or work
fewer hours. To learn more about work concerns and
legislation, consult a social worker or purchase the
National Coalition for Cancer Survivorship’s publication,
“Working It Out: Your Employment Rights As
a Cancer Survivor”.

Another helpful resource is the Cancer Legal
Resource Center (CLRC), which operates out of the
Loyola Law School and Disability Rights Legal Center
in Los Angeles. Through their bilingual Spanish/
English toll-free telephone assistance line and Web
site, the CLRC answers personal questions about
cancer-related legal issues and provides information
about how to access affordable legal resources for people
to be effective self-advocates for their rights.

Will my partner be able to continue working during radiation therapy and chemotherapy?

87. Will my partner be able to continue
working during radiation therapy and
chemotherapy?

The choice to continue working during treatments is a
personal one. Radiation therapy sometimes requires
being at the hospital or clinic an hour a day, and
chemotherapy can also require regular visits to the
hospital, posing a time constraint. Ideal times for
treatment cannot always be coordinated with a person’s
work schedule. In addition, although the treatments
themselves are usually painless, patients may experience
various side effects because of the toxic nature of
the treatments. In other words, sometimes the substances
or treatments that are given with the intent to
kill the cancer can make a person feel sick as well.

For example, some patients experience diarrhea and
fatigue as treatment side effects. Although these symptoms
can be minor, they can sometimes become more
bothersome, particularly when radiation therapy and
chemotherapy are combined. Your partner’s choice of
how much work she plans to accomplish should be
based on the type of work, the convenience of the hospital
relative to her daily activities, your loved one’s
ability to tolerate treatments, and other issues, such as
financial considerations and her employer’s flexibility.

The truth is that no one knows how your partner will
react to treatments until after starting them. If possible,
she may want to begin with a more limited work
schedule (meaning less than what she thinks she can
handle) and then add hours onto her schedule,
depending on how she feels and how high her energy
level is. Not only will committing to fewer hours prevent
her from falling short of expectations at work, but
it will also be good psychologically. It always feels
good to do more than expected (when possible) rather
then less than expected. With an altered work schedule,
many patients are able to continue working during
treatment. If your partner decides that she cannot
work or chooses not to work for other reasons during
her treatments (such as to spend more time with family
and friends), she may be eligible for short-term disability
through her workplace and/or Social Security
Disability

I have to go to work for financial reasons, but I feel so bad about leaving my husband to go to medical appointments without me. How can I do my job and not feel so guilty?

86. I have to go to work for financial reasons,
but I feel so bad about leaving my husband to
go to medical appointments without me.
How can I do my job and not feel so guilty?

You need to acknowledge that you cannot physically
and emotionally “do everything.”

Mark’s comment:

Your commitments to your day-to-day life can’t end because
someone you love is sick. If you stopped working to take care
of him or her all the time, you’d both starve, which isn’t an
improvement on the current situation! Sometimes practical
matters just have to come first, and to heck with feeling guilty
about it—it’s the way it has to be, and that’s the end of it.

Family and friends are often torn between providing
support and care for the patient and their other life
duties, such as work. This is particularly true if there
are financial concerns, since this adds to the pressure
and sense of conflict between providing financial support
and providing care. First of all, talk to your husband
about how you feel, and ask him if he wants or
needs someone with him at every appointment. Sometimes
caregivers feel an overwhelming sense of responsibility
to be with patients at every minute, and,
ironically, patients sometimes want a bit of time to
themselves but they don’t say anything for fear of hurting
family members’ feelings.

Most importantly, you need to acknowledge that you
cannot physically and emotionally “do everything.” If
the patient does want companionship or assistance
during an inpatient hospitalization, for example, you
may ask other family or friends to take “shifts” being
with your loved one during your work day. You can
then schedule your shift for evenings and weekends.

For outpatient appointments, ask these people to
assist with driving your husband to and from appointments
(if he is unable to drive) or visit him during
longer chemotherapy treatments. This plan also provides
opportunities for other friends and family members
to spend quality time with your husband, and
fosters feelings that they are contributing to his care.

If you do not have others who can assist, and you can
afford it, consider hiring a private aide or nurse to
supplement his care (at home or in the hospital).

On an emotional level, guilt is a feeling that arises
when someone believes he or she is doing something
to harm someone, or believes he or she is not doing
enough to prevent harm. Loved ones have told us that
they feel pressure to do everything for the patient
because they fear that if they do not do everything,
the cancer will come back, or worse, their loved one
will die. As long as your husband is not in danger, you
need to establish realistic limits and understand that
you are neither responsible for your husband’s cancer,
nor are you going to make the cancer worse by setting
realistic limits and doing necessary life tasks, such as
going to work. In fact, sometimes family members do
too much for patients, increasing dependence and
reducing helpful physical activity. If your husband is
physically capable, it may be good to support his independence
and his sense of control by encouraging him
to continue to do household chores and/or other
activities by himself.

How should patients negotiate for sick leave or disability leave from work? Also, how do I negotiate for time off from work to be with my family member for medical appointments and to help her at home?

85. How should patients negotiate for sick
leave or disability leave from work? Also,
how do I negotiate for time off from work
to be with my family member for medical
appointments and to help her at home?

If your loved one is currently working or plans to
resume work and she believes the treatment schedule
will interfere with working, she can ask her employer
about flexibility in hours to accommodate treatment
and appointments. Additionally, she should inquire
about temporary disability insurance, continued
healthcare coverage, and medical or family leave.

Employees who have accrued enough sick time may
not have to dip into these benefits. We have also seen
patients bring work with them to the hospital and,
when possible, continue a productive work schedule.

As a primary caregiver for an ill person, you may also
be entitled to time off from your workplace in order to
provide care to the patient. First, you may want to
speak with your supervisor to discuss the possibility of
a flexible work schedule to accommodate medical
appointments, and so forth. For example, instead of
working nine to five, maybe medical appointments can
be scheduled in the mornings, and you can arrive to
work late and work late. This way, you may be able to
maintain your full work schedule, keeping your full
income and benefits.

However, often people cannot alter their work schedule
this way. You should assess your employer’s policy
on taking personal days, vacation days, and possibly
sick leave to care for an ill family member. Some companies
have a pool of employee-donated sick hours for
those who need them. Family medical leave for more
extended periods also may be possible. According to
the Family Medical Leave Act, eligible employees are
able to take unpaid leave from work for up to 12 weeks
and be guaranteed the same or similar position and pay
when they return. Before quoting this law to your
employers, however, investigate how it applies to your
circumstance.

Search the ACS Web site (www.cancer.org)
for specific topics or consult the U.S. Department of
Labor for details.

If you take family leave, be aware that your employer is
not required to hold your same job, only a comparable
one, and that you may not have the same benefits, such
as medical coverage, during your leave. These issues
are important to consider, especially if the patient is
receiving health insurance benefits from your workplace
benefits. Therefore, make sure that you are able
to continue healthcare insurance coverage. This will
entail either you or your employer paying the premium.

You may also spread out the days away from the
job; for example, you may want to take off two days a
week, instead of taking leave all at once. Investigate
your employer’s policies by speaking with your human
resources department and/or your supervisor.

Whom should I tell at work that my family member has cancer?

84. Whom should I tell at work that my
family member has cancer?

Telling one or two trusted friends, specifying that
you want to keep the diagnosis confidential, may be
a way to obtain needed support and attempt tomaintain
control over what people know about the cancer diagnosis.

Telling people at work may have benefits, but disclosure
can also have some potential drawbacks. Many
people have close friends at work, and talking to these
colleagues may provide them emotional support and
opportunity to talk about their experiences. You may
find that people you know have gone through similar
experiences and can provide some good advice. However,
many family members have told us that sometimes
“advice” can be unsolicited, unhelpful, and
sometimes overwhelming. Family members may tell a
lot of people in the beginning of the diagnosis, and
then later regret the widespread disclosure because it
seems like the “whole world” knows their personal
business. It can then be hard to simply escape thinking
about and discussing the cancer, and to focus on work.

If you do want to disclose, you may want to consider
telling only the people who need to know. For example,
it may (or may not) be necessary to tell your supervisor
or human resources staff in order to receive time
off to attend medical appointments or care for the
patient. Telling one or two trusted friends, specifying
that you want to keep the diagnosis confidential, may
be a way to obtain needed support and attempt to
maintain control over what people know about the
cancer diagnosis. You can also be selective in what you
disclose. For example, you may say that your family
member has cancer, but you do not have to talk about
the specifics, such as stage of the disease, treatments,
or the details about how the patient is doing. Furthermore,
sometimes people at work will know the patient,
or in smaller communities where “everyone knows
everyone,” it is important to consider your loved one’s
feelings about disclosure as well. Together, with the
patient and other family and friends, talk about who is
to be told, and what they will be told.

What is the difference between Social Security Disability (SSD), Supplemental Security Income (SSI), Social Security (SS), and public assistance (welfare)? How can someone apply?

83. What is the difference between Social
Security Disability (SSD), Supplemental
Security Income (SSI), Social Security (SS),
and public assistance (welfare)? How can
someone apply?

There are many government programs, particularly at
the state and federal level, which can assist with
healthcare coverage and financial assistance for eligible
recipients. There are also types of private insurance
policies, such as long-term care insurance or private
disability insurance, and many other government programs
not discussed here. However, some of the most
common programs, along with brief descriptions of
each program, are provided in the following list. For
more comprehensive information on public assistance,
or for information on programs not mentioned here,
refer to the resources provided in this section and at
the end of this book.


Public assistance = A federally run program to provide 
cash benefits (e.g., food stamps, welfare) for persons 
with a low income to purchase food and clothing and 
to pay for housing.


• Social Security Disability (SSD; U.S. Social
Security Administration; www.ssa.gov): Provides
monthly income to disabled workers and their families
based on prior payroll contribution and disabled
status. If a person becomes disabled before the age
he or she is eligible for full Social Security benefits,
he or she can receive SSD payments after 6 months
if he or she has:
1. enough Social Security credits, and
2. a physical or mental impairment that is expected
to prevent the person from doing substantial
work for a year or more, or a condition that is
expected to result in death.

• Social Security (SS; U.S. Social Security Administration;
www.ssa.gov): Social Security provides monthly
payments to persons age 65 and over and to surviving
family members (after the recipient’s death, including
dependents). Eligibility entails contributing to
Social Security during a person’s previous work history,
and the amount of payment is based on a formula
that considers the amount contributed during
that history.

• Veterans Benefits: If a person is a U.S. veteran, contact
the Department of Veterans Affairs to investigate
veterans’ benefits for which he or she is
eligible (including possible financial assistance
and/or medical care). Qualified veterans can also
receive discounts on prescription drugs.

Veterans’ benefits = Financial and/or medical care and
discounted prescription drugs that may be available
for U.S. veterans.

• Supplemental Security Income (SSI; U.S. Social
Security Administration, www.ssa.gov): Provides
monthly income to eligible people over the age of
65, or to blind or disabled people, with low income,
few assets, and/or limited formal work history. SSI
may also provide benefits for people waiting for
SSD payments to begin. U.S. citizenship is
required, with few exceptions. If you are eligible for
SSI, you may also be eligible for Medicaid, food
stamps, and other assistance.

• Public Assistance (welfare/food stamps; individual
states’ Department of Social Services): Provides
cash benefits to low-income persons for food, clothing,
and shelter. Benefits vary depending on assets,
income, rent/mortgage, living arrangements, work
expenses, and other special needs. Some states
require recipients to work, and if they are unable to
work due to illness, the agencies may require a
physician’s examination as confirmation. Food
stamps provide a monthly allotment of coupons for
low-income households to purchase food at grocery
stores and meals in some restaurants.

What if insurance denies a claim?

82. What if insurance denies a claim?

If you think that the insurance company has denied a
claim that should have been covered or is discontinuing
coverage, first contact the patient’s insurance company
and/or human resources department if health
insurance is provided via her workplace. Sometimes
simple changes need to be made to fix the problem.

For example, claims can be rejected for reasons such as
having your incorrect birth date or social security
number (SSN) in the computer system or on a form.

If an initial telephone inquiry does not work, write a
letter to the insurance carrier, clearly stating the
claim number, the date of service, the correct personal
information of the patient (policy and group numbers,
SSN, birth date, name, and address), and the reason you
believe the claim should have been approved. Be direct
but pleasant in your tone, and keep a copy of the letter.

The carrier may request additional medical information
before covering certain tests or treatments, and sometimes
sending additional documentation or having the
doctor contact the carrier can resolve these issues. If you
have exhausted all other options, you can contact your
state’s insurance commissioner or hire a lawyer who specializes
in insurance disputes.

Recent legislation at the state and national level exists
to protect patients, in some limited ways, from insurance
coverage lapses due to medical diagnosis and
unfair claim rejections. Private insurance companies
and health maintenance organizations (HMOs) are
most likely regulated by your State Department of
Insurance or State Department of Health. See the
Appendix for specific references to learn more about
these laws and how to seek assistance, including the
National Coalition for Cancer Survivorship’s publication
entitled, What Cancer Survivors Need to Know
About Health Insurance.


Health maintenance organizations (HMOs) = 
An organization providing health care to enrolled members
through a network of member doctors and other healthcare
providers. Designed to reduce costs, HMOs also typically 
restrict access to providers or specialists outside their 
approved networks.


An organization that provides assistance with insurance
matters and can serve as a liaison between patients and
their insurer is the Patient Advocate Foundation. They
have case managers, doctors, and lawyers on staff to
help people resolve insurance issues (as well as job
retention and/or debt matters related to their cancer
diagnosis), with the goal of assuring patients’ access to
care.

What are some tips on negotiating with my partner’s insurance company?

81. What are some tips on negotiating with
my partner’s insurance company?

One of the most helpful things you can do
is assist the patient with negotiating with
insurance coverage.

As family or a friend of a person with cancer, one of
the most helpful things you can do is assist the patient
with negotiating with insurance coverage. If the patient
wants your involvement, she may have to contact the
insurance company, her employer, and medical provider
to give written permission for you to able to give and
receive confidential information. As many of our patients
and family members tell us, dealing with the insurance
claims can be one of the most stressful aspects of managing
cancer treatment.

Contact the health insurance carrier, and if your partner
receives insurance benefits through her employer,
contact her human resources department to discuss her
policy coverage as soon as possible. Many insurance
companies have established agreements with certain
physicians and hospitals, often called the “in-network”
medical providers. Furthermore, in order to access this
“network” of medical care, a person may first need to
be referred by his or her primary care physician to see a
specialist. This type of insurance coverage is sometimes
referred to as a managed care plan. Different
types of insurance plans exist (such as HMOs, POSs,
PPOs, etc.), so be sure to contact the insurance
provider to get clarification of what is covered, and
what isn’t, under the plan.Write down the name of the
customer service agent to whom you speak.

Even with the most restrictive managed care plans,
however, it still may be possible to receive certain types
of cancer treatment out-of-network (from hospitals or
doctors who do not have specific agreements with your
insurance company), particularly if the treatment is not
available by an in-network provider. Be aware that
going out-of-network can potentially be more costly if
the patient has to pay an “out-of-pocket” share herself.

Make sure that you both are fully informed about the
coverage policy of the institution where your loved one
decides to get treatment. Some insurance carriers assign
a caseworker if a patient wants to receive treatment
out-of-network (or out-of-state), and this person can
Document all contact with the human resources
department and insurance company, and get everything
in writing, such as permission to go out-of-network or
referrals to specialists. Include date, time, name of the
person with whom you spoke, issues discussed, and resolution
or plan. Keep all of this information organized
in a filing system, and always keep copies of any materials
you send to the insurance company. If the patient
needs to dispute coverage decisions, all of this tedious
documentation will be invaluable, as it will save time
and energy in the long run.

Document all contact with the human resources department
and insurance company, and get everything in writing,
such as permission to go out-ofnetwork or referrals to
specialists.

Prescription drug coverage is getting so expensive, even though we have insurance. Is there anything I can do to reduce this expense?

80. Prescription drug coverage is getting so
expensive, even though we have insurance.
Is there anything I can do to reduce this
expense?

Some pharmaceutical companies provide limited free or
reduced-cost prescriptions to qualified individuals as
part of “compassionate use” or “patient assistance” programs.

If you are having trouble paying for certain
prescriptions, ask your doctor or pharmacist what company
makes the drug. Then, contact the company to
determine whether it has such a program and how you
can apply. You can also try NeedyMeds, Inc., to find
information on specific drug or company programs, as
well as the Partnership for Prescription Assistance,
which serves as a single point of access to more than
475 public and private patient assistance programs.

Investigate purchasing supplemental insurance coverage
to defray the costs of prescriptions. These plans may
be expensive, but could be less than buying pricey drugs.

Many states also have pharmaceutical assistance programs
that provide financial assistance to defray the
costs of medications for the elderly or disabled. Contact
CancerCare, Inc., for a list of states with such programs.

You should also contact the office administering the program
in your state to make sure your loved one qualifies.

There are also a few foundations that provide grants to
help defray the out-of-pocket expenses associated with
prescriptions and other healthcare costs. As mentioned
in the previous question, funds for these programs are
often limited, with eligibility guidelines restricted to
specific cancers, so it is a good idea to contact the following
organizations directly for further information:
The Patient Advocate Foundation Co-pay Relief Program;
the Patient Access Network Foundation; and
the Healthwell Foundation.