Introduction to the Questions and Answers
The stories in Dying Well document the real
experiences of real people dying. They also show what is possible to
achieve in helping family and friends who are dying. People often ask me
about difficult situations involving loved ones who are terminally ill.
Perhaps a father is dying in pain or a doctor persists with treatment that
no one wants.
In each case, of course, the specific answer
depends on the people involved, the medical and community resources
available as well as the cultural and political climate of the hospital,
nursing home or community. I can, however, share some general guidelines
that help me respond to questions I commonly hear.
I start by listening
closely to the questions themselves which can provide important insight into
the attitudes and expectations of the person and family. For instance,
asking, "How can we make sure that Mom is getting the best care possible?"
reveals the sense of responsibility family members feel and -- and this is
key -- their high expectations. In my mind, asking the question puts them
halfway to the goal. Commitment and determination are the other essential
ingredients they will need. Everything else is detail.
Family members rightly
feel the responsibility to protect and nurture loved ones as they die.
Whether or not you are related to the person dying by blood or marriage, if
you have a special sense of connection to the person, you are family.
The "best care possible"
will always be easier to arrange if doctors, nurses, hospital, nursing home
and/or hospice program involved are skilled in palliative care and aligned
with the person’s and family's goals. However, when it comes to end-of-life
care, people should temper trust in professionals with careful scrutiny.
Ultimate responsibility for end-of-life care must remain with the person and
family. Enlist the help of the best doctors, institutions and support
services you can find, but make certain that the job is getting done and
that your expectations are being met. This is where commitment and
determination comes in.
current general state of care for the dying in America is woefully low.
Nevertheless, you can and should expect that physicians and nurses will do
whatever is necessary to relieve physical suffering. Beyond comfort, the
care given should enable your loved one to live as fully as possible in
whatever time is left and should honor the tender, personal nature of dying.
The process begins with asking your questions.
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Beginning To Talk About Dying
Q. My sister has
advanced breast cancer and no one in the family is talking about the fact
that she's getting weaker and weaker. How do we begin to talk about dying?
A. Begin by being
unembarrassed about the fact that eventually, everyone dies. I think
conversation is easier when people approach the subject from an
understanding that the experience is universal and no one can avoid it.
Usually, when family members aren't talking about dying one of two things is
happening: Either a) there is unwillingness on the part of the person or a
family member to acknowledge that the illness is progressing, or b) dying is
on everyone's mind, but there is a conspiracy of silence in a misplaced
attempt to protect one and other from discussing painful feelings and
Naturally, it is
essential to be sensitive to your sister's feelings; in discussing her
illness and treatment with her, follow her cues. You might begin by asking
how she feels her treatments are going. What does her doctor say he is
planning to do next? Or ask in an even more general way how she feels she is
doing. If her answers reflect an optimism regarding cure that seems
unlikely, given what you know of her condition, it may be best to let the
matter rest, at least for a while. Take care to avoid pushing your own
agenda -- this is first and foremost her dying. Trust your instincts. As her
sister, you are probably in the best position to know how to proceed. One
particularly gentle way to follow up on vague responses can be to inquire
about events several months to a year in the future, such as where and how
she wants to celebrate a birthday, Christmas or other holiday, or if she is
still planning a trip she had previously mentioned.
Sometimes it is OK for
sisters to be direct. While it is her illness and her dying, you are going
through the experience, too. A lot of important questions can be asked
without challenging her optimism. If, for instance, she responds to an
open-ended, "How are you doing?" by reporting that, "Dr. Phillips says that
the tests all look better," you might say something like, "Do you mean
there's hope to really beat this thing?" Her response will likely clarify
whether she has avoided talking about not getting well to protect you or she
is focused on cure and, at present, emotionally unable to consider the
It's possible your sister
wants to talk about her dying. She may put out feelers to test you and the
others for their readiness to talk. Listen for discouraged or exasperated
comments on the order of, “I don't know why I'm going through all this!" or
AI wish this would all be over with." These statements should be recognized
as openings to important conversation. Dismissing such remarks ("Oh, you
don't really mean that.") or covering them over with simplistic reassurance
("You're going to get better, I just know it.") effectively closes
conversation and isolates the person in despair. If your sister provides
an opening, consider stating the obvious, "What you're going through sounds
awful," and letting her know you can listen, "I would love to hear how
you're really doing."
In asking the hard
questions, of course, you or your family must be willing to hear hard
answers. Think about what you will do or say if she responds to your
interest by openly confiding her darkest fears and fathomless sorrow.
Sometimes what people need most is for someone they love to simply listen.
A valuable strategy for
discussing these intimate and poignant subjects with your sister or with
other family members is to use "I" statements, framing what you say in terms
of what you are feeling. In talking with your other siblings or parents,
avoid statements that sound as if you are telling others what they should be
thinking, feeling or saying. ("We can all see Sherrie is getting sicker and
we need to talk about her dying.") By sticking to “I" statements you can
avoid intruding on your family's emotional space while saying the things
that need to be said and may inevitably provoke uncomfortable feelings in
In talking privately to
your mother or brother, for instance, you might say, "Sherrie looks weaker
to me, I am worried about her." In this way you can open the discussion
while not imposing an agenda. Similarly, in talking with your sister, it is
almost always OK to tell her how you feel. "Sherrie, I love you so much and
I'm scared of losing you," is very direct statement that, nevertheless,
respects personal boundaries.
Q. Mom had a massive
heart attack and is in a coma. How can she possibly say "The Four Things"?
A. When someone is in a
coma it is hard to know exactly what they can hear, feel and think. I choose
to err on the side of assuming a person in coma can hear and feel. Thus,
simple explanations, human voice and touch remain important elements of
Your mother is now beyond
the ability to say "the four things and goodbye" but perhaps she can listen.
Remember that the purpose of the four things is to complete relationships
and “good-bye” began in the blessing, “God be with you.” It will do no harm
and might be an extraordinary gift to tell her you love her and that you
will miss her. When there has been emotional conflict or turmoil within
families, the impending death of a family member can be an opportunity for
What would your mother
have wanted to see happen most before she died? If the answer is that she
would have liked to see you and your father or sister forgive each other for
past hurts, consider what a gift doing so could be to her. When they can be
said honestly, feelings of forgiveness should be shared with your mom.
Similarly, if she would be worried about you in the future, tell her that
you can make it without her -- you can. If there is a sense that she has
been hanging on for some reason, at some point it may be helpful to tell her
it is OK to let go.
When people are
incapacitated by their illness, I try to think of ways not only to minimize
bodily discomfort but also to gift them with physical pleasures. Music,
gentle massage with fragrant oil, warm bathing, hair brushing are all simple
pleasures – a way of expressing gratitude and love to people who are unable
In our culture, we
reminisce and tell stories of our loved ones at funerals and memorial
services that pay tribute to them and celebrate their lives. Why do we wait?
Relatives and friends can begin that process, formally or informally, at
your mom's bedside.
You cannot undo the
tragic events of your mom's heart attack and coma, or the likelihood that
she is beyond awareness. But if at the time of her death you are confident
she was comfortable and feel that she was loved -- and even honored -- in
the care she received, she will have died well.
Q. My mother and
step-father live in a distant state and I have just found out that he is
seriously ill and probably dying. How can I help him to die well?
A. There are a number of
questions behind and within the one you asked: How involved should I be?
How important is it for him to see me? Would I be able to take the stress of
being involved? If I can only visit once, when should I go? What can I do
from this distance?
Only you know the history
and status of your relationship with your step-father. If it has been loving
and mutually supportive, I encourage you to stay involved through frequent
phone conversations with your step-father, mother and care givers around
them. If things between you have been distant, uneasy or openly conflicted,
take stock: Do you have things that you need to say to your step-father? Is
this a chance to write a happier ending to this chapter of your family's
story? Does it matter to you whether the relationship ends well? If you made
an attempt and it failed, would it matter to you to have tried? Be honest
with yourself in asking these questions.
If you remain in doubt, I
encourage you to lean toward being more involved. Make contact and offer
whatever help you can while respecting your parents' privacy. Stay sensitive
to how your interest and offers are received.
The distance and your own
responsibilities may impose serious limitations on what you can do. If you
decide that you want to make a trip, do so fairly early. If you wait your
step-father may have less energy to really visit. Furthermore, if there is
lasting value to be gained in your involvement, the sooner you start, the
sooner the dividends begin flowing.
Even at a distance, there
are things you can do. Stay in contact. Let your parents know you care. Send
cards, call -- even during the day. This is not the time to worry about the
phone bill. Remember, sometimes the most precious thing we can do for
another person is listen. The telephone can be an important resource in
very practical ways. You may be able to participate in discussions with your
parents and the doctor, home health or hospice team seeing your parents. If
they need help locally and are having trouble getting it, you may be able to
find the services they need by being assertive and using the phone.
Your local library may have a Yellow Pages for their town.
Can you take the stress
of involvement? These days people walk around feeling they could not
possibly deal with another ounce of stress. The real question is, Can you
avoid it? And the answer is, No. You already know your step-father is
seriously ill. You already own this pain. Challenge the assumption that
being uninvolved will lessen your discomfort. If you have work to do to
complete your relationship with your step-father and you choose to skirt it,
the distress you feel may be less abrupt, but it is more likely to linger
and gnaw at you over time. The question I recommend you consider is, Can any
good come out of this bad situation?
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Helping to Ease Symptoms and Bring Relief
Q. Mom has cancer and
she's having a lot of pain despite the Darvon and ibuprofen the doctor is
giving her. What else can be done?
Plenty. The right
treatment will depend on what is causing the pain. Knowing what is likely to
work best for an individual person in pain requires knowing about the pain
and the person. This is where having a caring and careful doctor is crucial.
Only occasionally does evaluating pain in a person with cancer require
elaborate testing. More often, a simple interview and gentle physical
Doctors are trained to
diagnose pains by sorting through common patterns and causes of discomfort.
A careful evaluation begins with basic questions: Where do you hurt? Is the
pain constant or does it come and go? What makes it better? When is it
worse? What type of pain is it: Sharp? Shooting? Pressure-like? Achy?
Burning? Or boring? What else happens when you are hurting? Do you get short
of breath? Sick to your stomach? It will help to begin keeping track of the
type of pains your mother has, its qualities and any associated symptoms.
Make sure that the doctor and nurses who are managing her prescriptions are
asking these sorts of questions.
(the generic name for Darvon and, with acetaminophen, Darvocet) is
chemically related to morphine, codeine and other "opioids," it has
relatively little pain relieving power. Ibuprofen is probably the more
potent the two medications your mother is currently taking. Ibuprofen
belongs to a class of drugs called NSAIDs (which stands for non-steroidal
anti-inflammatory drugs) which reduce pain by blocking production of
chemicals that mediate inflammation. NSAIDs are particularly effective at
diminishing pain from metastatic cancers in bones. Thus, unless the
ibuprofen is causing side-effects, such as stomach upset, it may be helpful
to use doses in the higher range. However, don't increase the dose of
ibuprofen, other NSAIDs -- or any medications -- without speaking with her
doctor because some side-effects are silent but, nevertheless, dangerous.
Most people with cancer
pain will eventually require treatment that includes a stronger opioid than
propoxyphene. Alternatives include hydromorphone (Dilaudid,) hydrocodone
(with acetaminophen in Lortab, Bancap, Vicodin and others,) oxycodone (Roxycodone
and with acetaminophen in Tylox, Percodan, Percocet and Roxycet,) fentanyl (Duragesic)
and morphine. When they are needed, these medications should used as part of
a pain-relieving plan.
Still other medications
may also be used to improve comfort. Steroids, such as prednisone or
dexamethasone (Decadron) are often helpful. If bone pain is part of your
mother's discomfort, radiation therapy may have an important pain relieving
role to play. Often brief courses of radiation therapy will suffice.
When a person's pain
persists despite the usual medications and interventions, more extensive
diagnostic tests may be necessary to better define the cause of the
discomfort and to guide therapies such as nerve blocks or intraspinal
Q. I have advanced
prostate cancer and the doctor wants to start me on morphine. I am afraid
if I take it now, when the pain gets worse, the medication will no longer
work. What should I do?
A. The technical term for
the effects of a medication wearing off over time is tolerance. While it is
true that tolerance to narcotic medication can occur, it is never a
significant problem in palliative care practice. During the course of a
progressive illness like cancer, it is common for people to require
intermittent increases in their dose of narcotic pain medication. Whether
the required increase is due to tolerance or progression of the disease --
or a combination of the two -- is usually a moot question. In any case
increasing the dose of the medication usually suffices. There is no maximum
dose above which it is impossible to go. The right dose is the dose that
Q. My aunt has
metastatic breast cancer and can't take narcotics because of a history of
allergies to them. How do you treat severe pain when you have an allergy
A. People commonly use
the word "allergy" to refer to side-effects that once required them to stop
using a certain medication. For instance, a person may report being allergic
to codeine and, when asked, describe a bad experience with nausea and
vomiting suffered when it was prescribed after surgery years earlier. As
awful as the bout of vomiting was, this was a typical initiation side-effect
and not a true allergy. (Codeine is famous for causing nausea and not often
used in hospice practice.) Allergic reactions usually are marked by hives,
blotchy rashes or, more seriously, abrupt onset of swelling or shortness of
breath following the first dose of a drug. Serious allergies or anaphylaxis,
to narcotics are quite rare. Even if a true allergy to one opioid medication
exists, it is usually only necessary to prescribe a chemically different
Q. My uncle has cancer
but has had so many side effects to morphine that he decided that it was
preferable to live with his pain. Aren't there better medications?
A. Obviously, something
must be done to allow your uncle to get relief. What is done will depend on
the nature of the side-effects he is having. Somewhere around 25% of people
develop excessive sleepiness, confusion or nausea when they begin taking
scheduled doses of morphine or other narcotic. These "initiation
side-effects" usually diminish or disappear within a few days to a week; in
this regard the phenomenon of tolerance is a beneficial feature of narcotic
pharmacology. Unless and until the side-effects resolve they can be treated
in various ways.
One narcotic side-effect
consistently resists tolerance, constipation. Almost everyone who is taking
narcotic pain medication requires a laxative of one sort or another to have
adequate bowel movements. In practice, constipation is only a problem when
it is not asked about and prevented, or not promptly attended to.
Everyone is an
individual. If side-effects do not sufficiently diminish within a reasonable
time, a change in medication is necessary. Reactions to one narcotic, such
as morphine, do not contradict the effective use of another. In
circumstances in which side-effects persist, other medications can be added
to achieve comfort. Anti-nausea medications such as Compazine or Haldol may
be employed. Psychostimulants, such as methylphenidate (Ritalin) or
dextroamphetamine (Dexadrine) may be utilized to counteract persistent
sleepiness secondary to needed doses of pain medication.
This may all seem
complicated and I include this discussion only to encourage high
expectations and to assist you in identifying the sort of professional
expertise to look for. Actually, the level of medical knowledge and
technical skill required to treat pain is no more complicated than that
demanded of internists, pediatricians or family physicians in managing
diabetes, a serious infection or a hundred other medical conditions. You
should insist upon nothing less than expert medical help.
Q. My father has
prostate cancer and a history of emphysema. He is taking 60 milligrams of
long-acting morphine twice a day which helps with the pain, but is still
uncomfortable. When he asked his urologist what to do, the doctor said he
was afraid to let him take more pain medication because it could suppress
his breathing. What would be the right dose in this situation?
A. The right dose is the
dose that works. Doctors who are unfamiliar with modern palliative medicine
sometimes worry about the respiratory depressant effects of narcotics. The
notion that people who are taking narcotics for pain control might stop
breathing if they take too much is simply not true. It is a clinical myth
extrapolated from the fact that large doses of morphine given to a
laboratory animal which is not in pain will depress the animal's breathing.
Likewise, heroin addicts who are not in pain and who inject industrial
quantities of narcotics do, occasionally, stop breathing. The respiratory
drive is strong and in both animals and humans it quickly overwhelms most
respiratory depressing effect of narcotics. Another way of saying this is
that tolerance to the respiratory effects of narcotics develops rapidly. Of
course, even before tolerance sets in, pain is an effective antidote to
Whatever the underlying
neurochemical mechanisms, hospice research over the years has proven that
when morphine or other narcotics are used to treat pain, even in very large
doses, there is no appreciable depression of breathing. On the contrary, by
reducing anxiety and the physiologic "work of breathing" morphine has been
repeatedly shown to improve respiration in patients with advanced lung
Q. My 32 year old
daughter is having more pain from her breast cancer. Her doctor wants to
prescribe long-acting morphine pills, but in the past whenever the pain was
bad, pills never worked. The only time she's been really comfortable was in
the hospital when she had injections. Don't injections work better than
A. Not necessarily.
Pills and injections basically work the same way, by delivering medication
to the bloodstream. It's true that initially the level of morphine will rise
more quickly with an injection, but the same concentration of morphine in
the blood, and the same pain relief, can be achieved by either means. For
cancer pain, it is almost always best to use medicine on a scheduled,
around-the-clock basis and oral long-acting morphine is well-suited for this
purpose. There are immediate release forms of oral morphine in liquid and
pills available for extra "rescue" doses of medication.
Recently, the narcotic
fentanyl has become available as a transdermal (across the skin) patch under
the brand name of Duragesic. Worn on the skin, Duragesic delivers a
relatively constant level of fentanyl to the blood stream for up to three
days and is useful for some people who have difficulty swallowing tablets
or remembering to take their medication.
Injections are used in
hospice care when people can no longer swallow pills or liquid medicines. An
important trend has been away from intravenous (IV) injections, which
require the insertion and maintenance of an IV line, and toward subcutaneous
(SC) infusions which use a fine gauge needle placed in the loose connective
tissue beneath the skin. In our hospice program we almost only use an IV
route for pain medications when the person has previously had a surgically
placed central IV line for chemotherapy. Subcutaneous infusions are well
accepted by patients, easy to maintain and provide a reliable way of
delivering a steady baseline of medication as well as rapid-acting rescue
Beware of intramuscular
(IM) shots. They are rarely, if ever, necessary in palliative care.
Intramuscular injections hurt and result in an unpredictable rate of
release of drug from the muscle to blood stream. In my experience the use of
IM medications is a clue that the prescribing physician is unfamiliar with
up to date symptom management technique.
Q. The doctor wants to
start Mom on narcotics for her breast cancer. Her sister was once addicted
to drugs and now she's worried about becoming addicted. Is this possible?
A. The myth that people
in pain become addicted to narcotics is reinforced by the media's portrayal
of addiction and street drug use. The "just say no" approach to illicit
substance abuse has fostered a puritanical approach to taking pain
medication and has resulted in many people with legitimate need for narcotic
medication suffering needlessly in pain. Addiction is defined by a craving
of drug for euphoria, by drug seeking in the absence of physical discomfort,
by manipulation of prescriber to obtain drugs. Clinical studies demonstrate
that people who receive narcotics for the treatment of pain under
supervision of experienced doctors do not become addicted. Hospice
experience bares this out. Following radiation therapy to an area of cancer
in bone or after a long-acting nerve block procedure, pain commonly improves
and narcotic medication can be reduced -- and occasionally eliminated --
without problems of drug craving.
A more troubling
phenomenon than addiction is prevalent in certain medical settings. A
syndrome arises in which a patient's pain is continually under treated and,
in desperation, the person begins drug-seeking -- lying to doctors and
nurses and otherwise being manipulative -- to obtain some relief. This
pattern, called "pseudo-addiction" superficially resembles addictive
behavior but has two distinguishing features. First, the person with
pseudo-addiction is in pain and, second, the drug-seeking behavior does not
reflect some fault or flaw within the person but rather negligence on the
part of the providers of medical care.
Of course, not all
concerns regarding addiction can be dismissed as unfounded. Some people do
have a history of serious addiction which can directly or indirectly
complicate the management of their terminal illness. Naturally, people who
are addicted to drugs also have a right to have their pain treated as they
die. When the dying person is known to be actively using heroin or crack
cocaine or similar potent non-prescribed drug, the addiction must be
considered because of the pharmacologic effects. Additionally, there may be
legitimate concerns about diversion of drugs to others or the selling of
prescribed drugs for profit.
If the patient has a
history of serious addiction but is no longer using illicit drugs or
alcohol, the issues are usually very different. In my experience patients
who are recovering drug addicts and alcoholics tend to be among the most
resistant to taking pain medication in adequate doses. I try to emphasize to
them that this is a medical, not a moral, issue and that taking medication
for pain is not addiction. When patients with histories of drug abuse
require narcotics after surgery, for instance, they rapidly return to
abstinence as their wounds heal. When I am faced with an ardent A12 stepper"
who needs, but is refusing to accept, adequate pain medication, I promise to
prescribe only what is necessary and, if and when their condition improves,
promise to reduce the dose.
In our culture, questions
regarding drug abuse and addiction will continue to arise. It is important
to air any worry about addiction with the doctor who will be in charge of
treating your mom's pain. More than likely, it is an issue around which her
doctor can be very reassuring.
Q. My brother is
almost immobilized by pain but every time the doctor asks about his pain he
says he's fine. What can I do?
A. Does your brother
admit to you that he is in pain? If not, perhaps the place to begin is by
gently remarking on his facial grimaces or stiff posture, or short temper,
or whatever it is that makes you think he is in pain. Some people think it
would be self-indulgent to complain or even admit to being in pain. "There
are a lot of people a lot worse off than me," is a common sort of statement.
My response to this is usually, "You're right. But so what? Don't you count
If your brother
acknowledges having pain, ask why he doesn't tell the doctor about it. Does
he think that the doctor wouldn't be able to help anyhow? Does he expect
that he will simply have to put up with pain because of his illness? Is he
feeling guilty about being ill, (AI brought this cancer on myself by
smoking.") and, therefore, deserving of the pain? Some people, and some
ethnic cultures, believe that pain is part of the healing or cleansing
Most commonly, people
resist talking to the doctor about pain because of unspoken fears: of
addiction, of wanting to hold off on strong medications "until I really need
it." Others deny increasing pain because they fear it means the disease is
getting worse. Studies have shown that in medical encounters, such as may
occur within busy cancer treatment clinics, patients may not want to take
time and distract the doctor from Amore important" issues.
Encourage your brother to
talk these issues out, first with you and other family and friends and,
second, with his doctor. Pain is treatable and is best treated early. If the
doctor doesn’t seem to have time, ask for an additional appointment. If this
doesn’t work, ask for consultation with a specialist in pain or palliative
Q. My wife has always
had problems with high cholesterol and insulin-dependent diabetes, and we
are used to carefully controlling her diet. Now she is dying of lung cancer
and losing weight. Do we have to keep watching her diet?
A. Probably not. Low fat
diets and diabetic diets are both intended to prevent long-term consequences
of vascular (blood vessel) disease, particularly heart attacks, strokes and
kidney failure. The diagnosis of an incurable illness like your wife's lung
cancer makes it likely that such prevention is no longer necessary. It is
important that her insulin is adjusted to what she is eating, however, in
order to prevent extreme levels of blood glucose or the onset of acidosis.
Here again, working with your wife's doctor to liberalize her diet is
Q. Mom has never
wanted to be hooked up to a feeding tube. But because of her Alzheimer's,
she is eating less and has been losing weight.
A. It is important to
begin by asking why she is not eating. Sometimes people with Alzheimer's
disease or other dementias stop eating because their dentures no longer fit
or they have a sore in their mouth or because they have a toothache that
they are unable to tell anyone about.
With advanced dementia,
however, people may reach a point when they are neurologically not capable
of eating. If this is the case, before inserting the feeding tube, it is
important to ask, "What purpose will the feeding tube serve?" If the answer
is, AI won't allow mom to die of starvation," the subsequent question might
be, "What would it be acceptable for her to die of?" These are the real
issues. Too often, questions of this sort are not asked. Families go along
with, or insist upon, feeding tubes and, whenever there is a fever, IV
antibiotics. After many months, a family member may voice anguish over the
plight of their loved one who "just won't die." In truth, at the end of a
long illness people often stop eating; this seems part of the "wisdom of the
body," and is, undoubtedly, one of the most peaceful and comfortable ways of
Remember that placing and
using a feeding tube are medical procedures that should meet defined,
achievable clinical goals. I suggest that if your mother's condition is
advanced and a medical evaluation (including an oral examination) does not
resolve the problem, she should be assisted in eating. A speech or
occupational therapist skilled in eating disorders can provide invaluable
help. If she resides in a nursing home and you are not directly involved in
her physical care, arrange to observe her at meal times. Is she being helped
with eating? Determine in your own mind if the encouragement and assistance
she is receiving is sufficient. On the other hand, make sure it is not
overly aggressive and borders on force feeding. Talk to her doctor. Get a
second opinion. Talk to the local hospice program for its perspective.
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3. Dealing with Medical Institutions
Q. My grandfather has
stomach cancer and lots of physical and emotional problems. I go with him to
his doctor's appointments but every time, we leave without having discussed
what is bothering my grandfather most. The doctor always seems rushed and
has barely enough time talk about the lab tests and the next treatment.
Without offending the doctor, how can we make sure that our problems are
addressed and our questions are answered?
A. Communication is
absolutely essential in any doctor-patient relationship. Patients and family
members have a right to expect that their physician will listen and try to
answer their questions. There is no such thing as being too busy to listen:
appointments can be extended or new appointments made to address left-over
issues. A physician who is consistently unable or unwilling to listen is
probably not the person you want managing your grandfather's terminal care.
Most physicians can and
do want to listen and are happy to answer questions. Keeping in mind that
doctors do have tight schedules, a little preparation can go a long way.
Before the next appointment talk with your grandfather about the questions
you want to ask the doctor and write them down. At the beginning of the
visit let the doctor know that you have several questions you need to ask.
If there are a lot of
concerns, organize the questions around topics such as treatment choices,
medications and side-effects, eating and meals, and help-at-home questions.
The doctor may not answer every question herself and, depending on your
needs, may refer you and your grandfather to a dietician or a social worker
to answer some of the questions. Just make certain that you leave the
doctor's office feeling confident you know what you are to do regarding
medications and general care or, if questions remain, that you know who you
are to be in contact with next. Save the list of questions to refer back to
and organize your thoughts for the next appointment.
Keep asking questions. It
is critically important to have easy, open communication with the doctors
and nurses helping to care for your grandfather. Do not settle for less.
Q. Mom is very old and
becoming progressively incapacitated because of osteoporosis and spine
fractures. She's living at home but can't take care of herself anymore. My
sister and I have done our soul-searching but we can't provide all the care
she needs either. None of the nursing homes are places we could have our mom
live. What should we do?
A. This is an extremely
difficult question for which, at present, there are no good answers. The
general level of nursing home care in America is unacceptable. You're right
to feel as you do, you're in a bind. It's not that your expectations are too
high, but that current standards are too low. My first advice is, don't stop
looking. Within the nursing home industry there are pockets of enlightenment
and innovation scattered throughout the country. I have seen some of the
best facilities, residential environments with a sense of community, places
that feel alive in body and soul. Spend an hour in such a place and you will
get the sense that people live there. You will notice instances of honest
solemnity as well as moments of genuine good cheer. The staff in these
places tend to look you in the eye when they speak and address residents in
a direct, authentic, non-diminutive manner.
The facilities that stand
out in my mind are all places in which the staff is carefully selected and
adequately compensated, and ongoing training and education is valued. If you
investigate an apparently better local nursing home and after the tour and
the sales pitch, aren't quite sure what to think, ask yourself this: Did the
staff seem proud to work where they do?
In addition to nursing
homes, ask the local community, hospital or hospice social worker about
personal care homes or other assisted-living arrangements. Some retirement
communities that require long term investment have integrated
assisted-living, skilled nursing and hospice services for members. If one
exists in your area, it is worth inquiring if there is any provision for
which your mom may qualify.
Hiring help in the home
may be another option. Most areas have agencies that provide private duty
services. Some insurance and government medical plans will partially cover
this expense. A social worker is invaluable at working through the
particular maze. If you have the means another, informal option may be
placing a classified ad requesting someone to live with your mom. This
requires a commitment on your part to interview and carefully screen the
respondents and to carefully supervise whomever is chosen.
Keep looking. You'll know
the right situation when you find it. Whichever situation you settle on,
stay involved and, unless you are delighted with the care, stay alert for
better alternatives. As you are doing so, continue to look ahead and prepare
for a time when your mom may need more care. Keep her doctor involved. If
her relocation forces a change in physician, interview more than one and
find one with whom mom and you feel comfortable.
Wherever she lives, build
a working relationship with the people who are directly caring for her.
Learn their names and treat them with respect. Ask as many questions as you
have about your mom's condition and treatments. Let the staff know by what
you say and by your interactions with mom that you really care and will make
certain things are done right. Be pleasant and persistent but, if you have
to chose, be persistent.
Look for ways to partner
with the facility staff and augment their care in ways that bring some
pleasure into mom's life. Enlist her favorite nurse or aide to help you
think of ways to enrich mom's daily routine or to celebrate various
When her condition
warrants it, ask for hospice to become involved. Know that wherever she is
living, if you think that hospice may help your mother she has the right to
a formal hospice evaluation. Hospice programs routinely see patients in
nursing homes, personal care homes and various other living arrangements. Be
advised, however, that some nursing homes will discourage hospice
involvement, reacting as if the request for hospice care is an affront to
their capabilities. In fact, hospice programs represent a team of
specialized services that are not otherwise available. When you are
evaluating nursing homes or assisted-living facilities ask if there is a
working relationship with one or more local hospice programs. Is it common
for residents to be served by hospice as they progressively decline?
Q. Our mother had a
stroke a year ago. She is comatose and on a feeding tube. She never wanted
to be kept alive artificially and my brother and I want the tube removed.
Her doctor and nursing home are making us feel like we want to kill her.
Would it be cruel to remove her tube?
A. No, it is not cruel;
in some circumstances it may be the most merciful thing to do. Keeping a
tube in a person's nose or directly into her stomach for no reason other
than artificially prolonging her life can be senseless and inhumane. Are her
hands restrained so that she does not reflexively pull at the tubes? Has she
had pneumonias or other complications of the feedings? Is she more
comfortable or less comfortable because of the artificial feedings?
Dying of a progressive
inability to eat is, probably, the most natural and physiologically gentle
ways to expire. In the context of advanced illness, hunger is rarely, if
ever, a source of discomfort. The same is true with thirst. Hospice
patients who are dehydrated are regularly asked if they are thirsty; most
answer no, but those who say yes are consistently and fully relieved by
having their mouth and throat moistened. A recent study confirmed this
experience. "Thirst" for people with advanced illness and dehydration is a
feeling of dryness and not the familiar sensation that can only be quenched
by drinking substantial amounts of fluid. In any event, the discomfort
associated with dehydration is easily prevented.
Most important is your
resolve to ask what is really right for your mother. Given that her death
from this stroke is inevitable, think about how it might occur that would
honor and celebrate her. If tube feedings are stopped, the time remaining
should be one of heightened care and attention. Think about simple rituals
to mark this passage that would have meaning for her. Keeping a candle
burning in her room or bringing a group of her friends and family together
to read to her or sing to her -- or merely to hold vigil -- can be tangible
ways of honoring her. The possibilities are limited only by your
Q. My wife was in a
car accident and is in a vegetative state. Her living will specifies that
she does not want artificial nutrition. The nursing home director says that
the institution can not allow removal of the tube. Isn't this a violation
of my wife's rights?
A. More than likely this
is, indeed, a violation of your wife's rights. Only a few states, notably
Illinois and Missouri, impose statutory limits on a person's right to refuse
artificial nutrition through a living will. There is general agreement that
tube feeding is a medical procedure that can be refused by the patient
either directly or, as in the case of your wife, through an advance
directive document. Nursing homes must either comply or cooperate with the
transfer of care to another, willing facility.
The situation is often
more difficult when there is no living will or durable power attorney for
health care or if the document signed by the patient does not specify a
preference regarding tube feedings or intravenous hydration. Some nursing
homes and hospitals still contend that any form of nutrition is basic care
and resist all attempts to remove feeding tubes. While the sentiment is
nice, the indiscriminate requirement to delivery calories and fluid
frequently results in medically-mandated assault on the person dying.
Everyone dies of something and there are far less comfortable ways to die
than by wasting away.
If you see a conflict
brewing with the nursing home, step back for a few days or a week; avoid
confrontation, at least until you are well prepared and have contingency
plans. Talk with an attorney who is knowledgeable about health policy and
law in your state. Ask the attorney about having a family member formally
appointed guardian. Contact a local hospice program and ask for its advice.
It may well have dealt with similar situations and know of an informal way
around this problem. Maybe transferring her to a different location would
resolve the dilemma. Perhaps there is an inpatient hospice facility to which
she could be transferred. Is there a possibility of taking your wife home
for the time she has left? At home, restrictive policy and procedural
concerns will not apply.
Q. My Dad is having
constant pain from his colon cancer. When we asked his oncologist to do
something, he said he was already prescribing morphine and that Dad was
doing as well as could be expected. Is there something else we can do?
A. If your Dad is in pain
there is always something else that can and should be done. You need to get
medical help. The exact approach to your father's pain will be determined by
a number of specifics: the details of his illness, the cause (or causes) of
his various pains, any additional serious medical conditions, his previous
experience with medications, his current dose of medications, etc. All this
is not especially complicated as medical treatments go, but it clearly
requires some expertise. Ask for, or seek out, a consultation with a
physician experienced with hospice or palliative care. You might ask a local
hospice program to conduct an admission evaluation or ask for a consultation
with a hospice nurse. Whether or not your father is eligible for hospice at
this time, useful suggestions are likely to come from the evaluation and it
will lay some groundwork for the future.
Q. My mother has
advanced breast cancer and horrible back and leg pains. Her doctor referred
her to a pain clinic. How is this different from hospice?
A. Many pain clinics are
directed by anesthesiologists and focus exclusively on the physical
components of pain. These centers are procedure-oriented and, as such, are
important resources when nerve numbing injections or implantable narcotic
infusion pumps are called for. But they are not hospices. Only occasionally
does a patient's pain require surgically implanted devices or neurolytic
injections. In the majority of situations, simple treatments and medications
can be used. Hospice programs consciously look at the bigger picture,
attending to pain but also paying attention to the person's medical and
Q. My sister has a
rare lung disease and is dying of progressive respiratory failure. Her
pulmonary specialist said that he didn’t think she would qualify for hospice
because she didn’t have cancer. Why isn’t she eligible for hospice?
A. She is. Hospice
programs care for people who are dying, regardless of diagnosis. The
misconception that hospice is primarily for people with cancer is
During the early 1970's
as hospice was developing in England and America, most patients referred to
hospice had cancer. In recent years more and more patients with progressive
neurologic diseases or heart, kidney or respiratory failure are being served
by hospice. A large and growing number of people are living with advanced
HIV/AIDS; each one deserves the sort of services that hospice represents.
Unfortunately, in the
United States, the bureaucracy and payment system of Medicare, Medicaid and
many insurance plans work against patients who need a hospice level of
service, but whose diagnosis does not lend itself to a reliable prediction
of when they might die. Some hospice programs are reluctant for financial
reasons to accept patients with AIDS who may require very expensive
medications or patients with heart disease or emphysema who may stabilize
between crises and live many months. In our program's experience, patients
with advanced lung disease have been well-suited and seem to especially
benefit from hospice care.
If you meet initial
resistance from the doctor, ask for a second opinion. If there is resistance
from the local hospice program, persist. Appropriateness for hospice is
determined by prognosis, not diagnosis. Ask to meet with the hospice
executive director or the medical director. Is there another, competing
hospice program in the area?
Q. Dad has been told
that his diabetes and the heart and kidney disease it has caused are
incurable. Is it time to talk with hospice? If not, how will we know it is?
A. Part of the answer to
this question relates to your father's functional status. Usually people
raise this question when the person has recently been losing weight and/or
the ability to get around or care for himself in basic ways. If the trend in
his general health and function is clearly downward, it is worthwhile to
talk with hospice.
At least as important,
however, is your father's preferences and expectations for care. Does he
want to live as long as possible and would he welcome aggressive treatments
(such as cardiopulmonary resuscitation and artificial ventilation) aimed
solely at prolonging life? A closely related question is how does he
experience his current quality of life? I have learned that it is a mistake
to assume that because a person can no longer do things for himself or,
perhaps, can no longer read the newspaper, that his quality of life is poor.
I have to ask.
In general I choose to
err on the side of encouraging people to talk early on about hospice, pick
up some hospice information and meet with someone from a local program.
Sometimes, if family members wait until they are absolutely certain their
loved one is ready, the referral comes too late. The sort of work reflected
in the stories of Dying Well takes time. Relationships build over time, as
does confidence and trust. It works both ways. Even with all the education
and clinical training our hospice team has, each person and family is
unique. We can only develop real expertise one case at a time.
Q. My brother has had
most of his medical care at the university medical center and sees many
doctors. Which doctor should manage his pain?
A. This is an example in
which identifying the problem and asking the question comprise two-thirds of
the solution. One doctor should primarily manage your brother's pain
treatment and symptomatic medications. The physician should be skilled in
symptom management and easy to talk with. When she is not available, there
must be a clearly delineated call system or back-up plan. At intervals ask
whether your brother's various doctors are receiving (and reading) notes
from the other physicians involved in his care. As his condition changes,
it should always be clear who is the medical "captain" of the physician team
and, if it is not the captain, who is responsible for comfort measures.
Q. Is there any
certification or licensing for doctors who specialize in palliative
medicine? If not, how do I evaluate a hospice doctor?
A. Palliative medicine,
the field of care that hospice physicians practice, is a recognized medical
specialty in England and Australia. Development of formal specialty status
is well under way in Canada. In the United States, the National Board of
Certified Hospice Nurses has begun administering an examination and offering
certification. The American Board of Hospice and Palliative Medicine has
been offering a certification examination for physicians since 1997. Formal
recognition of palliative medicine as an American medical specialty is a few
years in the future.
For the present there is
no simple answer to your question. Ask the local hospice program for
suggestions of area physicians who are knowledgeable in palliative medicine.
You can call or visit the website of the Academy of Hospice and Palliative
Care Physicians and ask about member physicians in your area. Of course, it
may be sufficient to ask your doctor if he has any special knowledge or
training in this area. If symptom management problems occur always consider
obtaining a consultation with another physician or a formal consultation
with a hospice nurse.
Q. Dad has congestive
heart failure and the doctor says he probably won't live beyond a year. The
hospice program says Dad is not eligible because his doctor won't certify
that he has less than six months to live. I think parents would both benefit
from hospice care. Is there any way Dad might qualify?
A. The criteria of a "six
months or less" life-expectancy is often misunderstood and does not need to
be a barrier to hospice care. Medicare established the six month criteria
for payment purposes and it has been adopted by virtually all government and
private health payers who cover hospice services. There is, however,
considerable flexibility within the actual regulations and Medicare's
official "interpretative guidelines." Most hospice programs talk in terms
of a "limited life-expectancy" as criteria for admission. Recent studies
have shown that determining the life-expectancy of any single patient,
remains a very inexact science even when physicians’ best estimates are
bolstered by sophisticated computer models. Therefore, using the figure of
six months as anything more than a rough guideline is inappropriate.
In practice, it is more
important whether your father's orientation is toward living as long as
possible and desiring continued life-saving care or toward completion of
affairs and living as comfortably and fully as possible in whatever time is
left. If his condition and preferences make hospice seem appropriate, the
program could admit him with the understanding that if he will be
reevaluated at regular intervals and that if he stabilized or his
preferences regarding care shifted, hospice could back out -- at least for a
time. Before they did, however, the hospice team would have helped devise a
plan of care, improve your parents' ability and confidence to perform
self-care at home.
Q. My mother is at
home and cared for by a hospice program. Still, she is in pain much of the
time. Is the hospice not doing its job?
A. I don't know, but if
your mother is in a lot of pain, something is wrong. How often has the
hospice nurse been seeing her? Does your mother, or you, tell the nurse that
she is in pain? Does your mother take her medicine regularly? Does she have
medicine to take as "rescue" doses and does she know how much she can take
and how often?
If you sense that the
hospice team is not as involved as it should be, ask hard questions. Why is
Mom still in pain? What are we supposed to do when she hurts and it is not
yet time for her next dose? If the nurse seems evasive or refers you back to
your doctor for these questions, consider this an indication that your
mother's doctor may be the problem. Ask the hospice nurse directly if your
mother's doctor is easy to work with.
Not all hospices are
created equal. Your mother's pain is a serious problem that merits serious,
on-going attention. If the hospice team is not responding with the frequency
and intensity that the problem deserves, begin by asking to have the hospice
medical director do a formal consultation. If the nurse says something like,
"Oh, our doctor doesn't do that," complain loudly or change hospices. Having
a medical director who is available to deal with problems of uncontrolled
symptoms is a minimal requirement for hospice program certification.
Q. We got hospice
involved because we needed someone to change Dad's dressing. Now they want
us to talk to the hospice chaplain, social worker and to let a volunteer
visit. We don't feel ready for it. Aren't they rushing it?
A. It's OK to take some
time, but my bias is to encourage you to at least meet the people suggested.
Hospice care is genuinely a specialized team process, in this regard it is
different than routine home health care. Your preconceptions of what social
worker or chaplain will say or do can keep you from meeting people who may
surprise you in pleasant ways. At very least, meeting members of the hospice
team now will build familiarity which can be a comfort later when more
services are needed.
Return to the Top
When the Dying is One's Own
Q. I have cancer and
am not ready to talk about dying but my family bought me this damn book. I
feel like they're pushing me into the grave. Why can't they just leave me
A. I can't speak to the
wisdom of them giving you Dying Well, but I as long as you asked, there are
reasons they can't just leave you alone. Even in dying you are stuck with
family. Like it or not, you didn't stop being part of your family when you
became ill. And belonging to your family still involves give and take.
Being sick certainly changes your roles and diminishes your responsibilities
within your family but responsibilities do not simply go away.
From the tone of your
question I can almost hear your response, "Responsibilities, for Christ
sakes, just let me be!" Sorry, you're not dead yet and, while your
responsibilities aren’t onerous, they are real. My best advice is, relax! It
will all happen naturally if and when you can give in to the fact that you
are still connected to your family. For instance, you have a responsibility
to tell your family what you need and what you want. They may well not know
what you need or want unless you do. If you don't want to talk about dying,
tell them so. But don't do it out of bravado or in silent suffering; it just
causes everyone more pain.
It's not dying that
people need to talk with each other about, but the living they've shared and
their relationships. I think people who are dying have a responsibility to
help reconcile strained relations they have with family and previously close
friends. Stated another way, if there is openness on the part of the
relative or friend, it seems irresponsible to ignore the chance to heal
wounded relationships before one's death.
Dying is fundamentally a
personal experience and, if it is truly your choice, it is also your right
to be "left alone." Recognize, however, that your relatives and friends each
have their own personal experience with regard to your dying. You can't
change that fact, and it's not your fault, but you can help them with their
own emotional distress. They may suffer because of the isolation from you.
Acknowledging another's pain by simply offering a kind word or a hug can be
an enormous gift to people who love you.
Q. I have AIDS and,
though I currently feel well physically, know that I will eventually die of
the disease. I have transferred important property, prepared my will and
assigned a durable power of attorney for health care decisions. But I still
do not feel ready to die. What can I do to prepare myself emotionally?
A. My guess is that you
have already done much of the work you need to do at this point in time.
Since your financial and legal affairs sound like they are in order, ask
yourself about affairs in other areas of your life. Are your relationships
also "in order?" It may not be time to say goodbye, but in saying "forgive
me" and AI forgive you" and expressing appreciation and affection to the
people closest to you, means there will be less needed to be said later.
For some people questions
of meaning underlie a sense of unreadiness. These are not merely
intellectual issues of philosophy or religion but rather genuine, wrenching
struggles to understand why certain things turned out the way they did in
your life. If you are someone for whom it is essential to get a sense of
meaning about your disease or an event in your past or about life in
general, honor this need and make this illness an opportunity to search for
answers that make sense to you.
Now that the disease is a
fact and you are who you are, what does life hold? What matters most to you
in life? Listen carefully to your answers; they will point the way to where
your work lies. Of course, this sort of inquiry and introspection can have
value at any time in our adult lives. Preparation for dying need not be
separate from living. Do the work you are drawn to do but keep the focus on
Q. I'm not married,
have no brothers or sisters and my parents died many years ago. Now I am
terminally ill. The stories of Dying Well stress the importance of family.
Can I die well without family?
A. The dying experience
represents an opportunity for a person to achieve an sense of
reconciliation, completion and closure in relationships with family. This
sense of completion is internal and can be achieved even after someone has
died. If you have been previously married and have unreconciled feelings
toward your former spouse or if you feel that your relationship with your
deceased parents or living relations was incomplete when they died, it is
worth talking about these feelings with a member of the hospice team or a
I have said elsewhere in
Dying Well that I think of family as a process; family is marked feelings of
mutual connection, appreciation and caring. When I use the word "family" I
mean both relatives and loving friends. Almost certainly, you have a group
of friends who qualify as family, in this sense of the word. Notice who
shows up and who you miss when they don't. In my years of hospice work I
have witnessed family dynamics emerge around even the most isolated
individuals. When people have been utterly alone for years it may be nurses
or aides in a nursing home or, perhaps hospice volunteers, who become family
to the person dying.
Lastly, as important as
family is, there are other aspects of our personhood that are equally
important. In what ways might it be important for you to change or grow, as
a person, during the life that lies ahead?
Q. I'm dying of lung
and brain cancer and can't do anything I used to enjoy. I'm feeling
hopeless and every day feels like an ordeal. Why should I go on living?
A. Your question
resounds with pain. It is awful to feel this bad. I don't know specifically
why you should go on living, but I know that while you are living, there is
relief to be had from your despair. It is normal to be sad and have a sense
of loss at this time, but feelings of hopelessness and unworthiness are not
inevitable -- although it may feel that way at present -- they are often
markers of clinical depression. Effective medications and counseling exist.
There is a way through. Don't give up, get help.
Return to the Top
Q. My grandfather has
been in a nursing home for years and hasn't recognized anyone in the family
for at least two years. It seems like he's in the hospital every couple of
months for an infection. Wouldn't it be kinder to put him out of his
A. Perhaps, but what
misery is he in? Is he in pain or does he spend his days frightened and
agitated? If so, these treatable conditions must be attended to.
At times when this
question is asked "the misery" is actually the family's. The patient is in
no distress and may actually enjoy most days but he is "no longer the person
If, however, his daily
life is miserable and it is consistent with your grandfather's previous
wishes, I firmly agree that he should be allowed to die. Are there ways in
which his present care is keeping him alive unnecessarily? Is he being fed
by a tube? What was the goal of treating his infections? Discomfort can be
managed without reversing the underlying condition. If the desire is to
invite death, these treatments should be reconsidered. Malnutrition and
infection are two of the most natural ways for people with dementia and
general debilitation to die. By "letting nature take its course" you can
remain loving and pampering in your care of your grandfather without feeling
that you have caused his demise.
Q. My friend has
advanced AIDS and has been asking me to help him plan his suicide. I love
him and want to help him, but can't bear to talk about suicide. What should
A. This is delicate turf.
You are right to feel uncomfortable with this request. Yet, it is wonderful
that your friend trusts you enough to talk about suicide openly and I
encourage you to allow him to air his feelings.
People who are
contemplating suicide typically feel hopeless, worthless, burdensome. In
helping him plan his suicide, you risk reinforcing these impressions. The
request for help in suicide is often a way of expressing deep despair. Try
to respond in ways that speak to his continued worth in your eyes. Tell him
you love him and that caring for him is a burden you want to shoulder.
If your friend persists
in his request, discuss his plans openly with him, but acknowledge that the
decision and actions should be his own. Your friend already has the ability
to end his life. People with AIDS and opportunistic infections need only
stop taking their various antibiotics and complications of the disease would
soon carry them away. The same carbon monoxide that Dr. Kevorkian provides
is available from the back of any car. While this may sound awful, it is a
mode of death that is available to him and is without pain. Additionally,
because of your friend's condition, it is unlikely he would be bothered by
hunger were he to stop eating. In fact, refusing to eat is probably the most
common and age old way people who are fed up with life hasten death. Were he
to do so, you could stand by him continuing to love, nurture and testify to
his inherent worth.
Q. What should I do
if my friend decides to go ahead with the suicide and wants me to be with
A. Naturally, there are
legal issues to consider. If you are the one to actually administer the
lethal drug or carbon monoxide or to place a plastic bag over his head, you
will be at some legal risk.
If, however, what your
friend intends is genuinely a suicide, in the current social climate your
legal risk is probably slight. Still, issues of legality and of unwelcome
publicity should be carefully weighed.
Ultimately the decision
will be a deeply personal one that only you can make. In whatever you do try
to reflect your continued love and your sense of his continued worth. Do not
become complicit with his feelings of being unworthy and solely a burden. If
you decide to be present, share with him your feelings. Our loved ones
should know they are being reluctantly released from our arms as they die.
Return to the Top
6. Caring for a Dying Child
Q. My three-year-old
daughter has a brain tumor, which is growing again after surgery and
radiation therapy. We want her to be at home when she eventually dies, but
all the specialists work through the university medical center. Is there
anyway she can be at home when she dies?
A. Yes, in all
likelihood there is. unless you live in the same city as the university
hospital, work with a pediatrician or family doctor in your own community
who can stay in close contact with the pediatric oncologists
Most hospice programs
readily accept children as patients and a number of larger communities have
special pediatric hospice teams. The hospice team can work with your local
physician as well as helping to coordinate care with the university-based
specialists. If you do not have an established relationship with a doctor
near your home, you might call a hospice first and ask for suggestions.
The National Hospice and
Palliative Care Organization, Children's Hospice International, and the
Academy of Hospice and Palliative Medicine may each be a resource in helping
to locate needed services in your community. Their addresses and phone
numbers are listed in the appendix.
Q. My child has
leukemia and the treatments keep getting more aggressive. I hate seeing him
in such distress and would rather lose him than watch him suffer. What can
A. Childhood leukemias
are often curable, even in fairly late-stage disease, aggressive therapy
sometimes results in long term survival. Before deciding to stop therapy, be
sure that everything possible is being done to ensure your son's comfort.
Is he adequately medicated in advance of painful procedures? Initial pain
medication can be given by mouth avoiding the anticipatory fear of the first
needle stick. In many pediatric centers topical anesthetic cream has become
routine before starting IV's or doing any procedures involving needles.
Young patients may need
to be held still for various procedures. However, except in true
emergencies, it is no longer acceptable to hold a child down instead of
medicating him for pain. Do not be intimidated by nurses or doctors who tell
you otherwise. Insist that adequate comfort measures are routinely
performed. If your child is frequently in pain, or has other physical
distress that is not being actively addressed, complain loudly. And keep
complaining until things change.
Q. Our six year old
boy has a brain tumor and requires pain and anti-seizure medication. He
hates any kind of shots. What else can we do if and when he is unable to
take oral pills and liquids?
A. Many medications come
in concentrated form that requires only a few drops of liquid which can be
placed under the tongue or in sips of juice. In some circumstances it is
preferable to use suppositories or pills placed rectally. Research has
shown that pills properly placed rectally are absorbed as completely and as
quickly as if they were swallowed.
If injections do become
unavoidable, ask about subcutaneous infusions which are the easiest to begin
and tend to be very well tolerated.
Q. Our 4-year old
little girl is dying and it is hard to imagine any possible value in this
experience. How can we possibly find anything worthwhile in this awful
A. It seems profane to
even consider the possibility of anything worthwhile coming out of your
daughter's dying. If this time does have value, it may only be apparent
years from now as you look back. Attempting to find meaning in the illness
and death of a child can become a trap for parents. There will probably
never be satisfactory answers for why this has occurred. The loss of a child
may be truly meaningless.
Perhaps the tragedy of a
child's death is only outweighed by the miracle of her birth. More than one
grieving parent has found meaning in balancing the sense of tragedy by
considering the time they had together as a precious gift.
landmarks that I referred to in the book apply in different ways with young
children. The key landmarks are concerned with achieving self-acceptance,
self-worth, a love of self and the capacity to feel the love of others.
These landmarks are more readily accessible to children; the younger they
are, the less they have to unlearn. Children are, by nature, innocents.
They are not burdened by accumulations of regret, remorse or guilt and,
thus, have much less to let go of. Tenderness comes easily to children.
Vulnerability and trust, which can be so difficult for adults to achieve,
comes naturally to children. It is an aspect of their inherent wisdom and
one reason why children tend to teach adults so much even as they die.
Be kind to yourself. Stop
looking for meaning and searching for value. This is the most difficult time
imaginable. It is enough for the present, to put one foot in front of the
other and remember to breathe. Do it all with a loving attitude; toward your
daughter, your other children, your spouse and toward yourself.
Q. My five-year-old
son has had leukemia since he was about one and it keeps recurring despite
aggressive treatment. How can I begin talking to him about dying?
A. A child's
understanding of what dying means will be different from what we might think
as an adult. The monumental existential issues of loss and finality most
often have little power for children. Instead your child may be most
concerned about separation from you, in an immediate, physical sense. In
whatever you say, therefore, be certain to include reassurance that you will
always be there to comfort and care for him.
Children deserve to be
treated honestly. It is only fair to tell them when the treatments have
stopped working. But it is certainly acceptable to balance the bad news with
some good. When a decision has been made to halt further chemotherapy, for
instance, it is OK to emphasize that he won't have to go to the hospital
nearly as often, that there won't be so many needle-sticks anymore, and that
your family will be spending a lot more time together at home and having
Your pediatrician, the
cancer program or the local hospice will be able to help and will have some
age-appropriate story books to help begin talking about dying. A child may
understand dying in terms of heaven and afterlife. Unless such notions are
unacceptable within your family's religious tradition, the belief that you
will all eventually be back together can be enormously comforting for him.
No set of questions could
ever be complete. I have tried to focus on general approaches that may prove
valuable to you and your family in your own, unique experience with dying.