There is nothing
easy about this journey and some things are impossible or
too painful to express.
I am honored and
grateful that I met Diane Phillips on the BrainTMR list.
She has a special way with words and was able to put down in
writing some of the very difficult experiences those
fighting cancer and those who love them may have to face.
With her permission the following information was taken from
her web site. Her love for her Dad shines through in
every word. It is our hope that this info will provide
some answers to the "impossible to ask" questions.
The Hospice Decision
What to Know About Hospice
Questions to Ask Regarding Hospice
Keeping Your Loved One
at Home Versus in an
The Hospice Decision
These are some of the concerns that cross caregivers' minds
when making the decision about hospice/palliative care for
their loved one with a brain tumor:
Could it really be almost over, after how hard we've
At this point, is there any chance that one therapy or
another could make a difference, even if only for a little
If we somehow managed to buy more time with another
treatment, how high would the quality of that time be?
How much time might we still have? Weeks? Months? If
we could know that, how would it impact our decision
about what to do now?
Is it possible that the patient could rebound from current
deficits and be just fine in a week or two? If so, would it
have been premature to call in hospice help?
If we make a move toward hospice care, will it appear
that we just gave up? How will that make the patient or
other family members feel?
Would I be capable of caring for the patient at home, or
would an inpatient facility better meet his or her needs?
If we keep the patient at home, what will be required?
How much help would hospice provide, and would it be
Will the patient feel pain, and can we expect to manage
If the death occurs at home, afterward how will it affect
me and other family members if we continue living here?
Will we forget all the memories of good times spent here,
and be left remembering only the sadness of illness?
If young children are involved, how do I ensure that
decisions are made in their best interest as well as in the
best interest of the patient?
What does the patient wish to do at this point, and is he
or she in a state to make that decision?
If I call in extra help, is it like admitting I'm not a
I'm afraid I'm going to feel guilty and regretful no
what I do. How can I know I'm making a good decision
I can feel good about a month from now...a year from now?
Stepping Off the Roller Coaster
If you've ever been on a roller coaster, you know that after
so many climbs and plunges, you begin to anticipate that
next change in direction. What goes up must come down; what
comes down will have to loop back around and take you to a
new dangerous high.
So goes the figurative roller coaster journey for most brain
tumor patients and their families. For example, new symptoms
can lead to surgery, which brings improvement and a plateau
of good times. At another time, a beautiful MRI can be
followed by brand-new deficits that surfaced seemingly
overnight, taking the patient to new lows in life quality.
Peaks and valleys, each in turn. Anyone who has been
fighting for a while understands that often what keeps one
going is the faith that a bad week just may be followed by a
better one. That's the way the roller coaster works, and
long-term caregivers, to some degree, often anticipate an
upturn around most of the bends. Sometimes it's the best way
to face another hard day.
But one of the first indications that a brain tumor patient
has entered the final stages is when the "valleys" stop
turning upward---that is, deficits worsen, new problems add
themselves to the mix, and when the caregiver compares the
patient's current status to the status a week or so ago, the
scenario is noticeably dimmer.
And yet it can be hard sometimes to "see what one is
seeing," after living the up-and-down pattern for any length
of time. For example, when a patient first skips two meals
in a day, the situation is too new for most caregivers to
consider significant. That roller coaster mentality
convinces one that things may improve by dinnertime...
or maybe the patient will be famished in the morning, after
a good night's rest. Sometimes that is, in fact, what
happens. Other times, though, a new trend has begun---a new
landmark has been passed---and it isn't until more time has
gone by that one realizes a new loss of function has
occurred which will not reverse itself.
When the patient experiences more and more of these losses
and seems to be moving "deeper and deeper into it" rather
than bopping up and down through the changes, it is wise to
look honestly at the situation and consider the role hospice
could play in caregiving. Most caregivers who have already
bid their loved ones goodbye say now that they only wish
they "had seen it sooner" and had called upon hospice help
earlier than they did.
No one can blame us for continuing to fight perhaps a little
longer than is required---that's just love at work, after
all!---but those who have preceded you in caregiving would
have you know the following.
What to Know About Hospice
Questions to Ask Regarding Hospice
Who will act as the overseeing physician---the doctor who
has been handling my
loved one's brain tumor care up until now or one of the
hospice agency's own doctors?
If my loved one's doctor is willing to remain on call to us
during the hospice period, is that something you would be
willing to work with?
If it can't work out that way, can you tell me a little
something about the doctors you mainly use (their
(Note: It is very unlikely that a hospice doctor would ever
make a visit to the house or even to an inpatient facility
at which he or she does not normally call. The doctor is
called upon by hospice nurses in cases when a new
prescription or refill may be necessary and he would not
normally have any contact with the patient or family
directly. Also, it is likely that the hospice doctors are
general practitioners rather than specialists with any
direct brain tumor experience. If the patient's own brain
tumor specialist is at all willing to remain on call to the
family or to the hospice nurses, this can be a wonderful
bridge into full-time at-home palliative care. We were lucky
enough to have my father's neuro-oncologist insist, at the
time he made the hospice referral, that he would be the one
to call under all circumstances. Things couldn't have gone
smoother, and he occasionally called us personally to check
How often could we expect a hospice nurse to come out to the
(Two to three times a week is fairly standard when the
situation is status quo, and otherwise as needed. Usually,
they check vital signs, note any new changes, and linger in
order to answer any questions the caregiver might have. If
the nurse has any feeling about how much time remains, he or
she will share this information with you.)
Who would I call if I had a late-night question? Is this an
answering service or a hospice dispatcher? How long,
typically, might it take for a return call? If it was
necessary for a nighttime on-call nurse to come out to the
house because of something serious, how long would you
estimate that this would take?
(A reasonable delay for a return phone call would be 15-20
minutes. A reasonable delay in having a nurse appear after
phone contact would depend on the distance between her home
and yours, but an estimate can help you understand the
potential for worst-case scenarios "just in case.")
What kind of equipment do you feel would help us in this
setting? How long will it be before this can be set up?
(This assessment should be handled at the first visit from
hospice. The volunteer or nurse will review the home and the
patient's current level of function, and from there will
recommend certain aids, like an adjustable hospital bed with
an air mattress, a bedside commode, a wheelchair and ramps,
a Hoyer lift or a lift belt, and incontinence
supplies---whatever is called for at the current time, with
additional supplies being offered as needed whenever the
situation changes. These things should typically be
delivered by another volunteer within a day or two. Other,
general advice may be offered about making the house or room
more convenient for caregiving.)
What other types of volunteers might we expect to have
access to? What kind of schedule is typical for them?
(A bathing aide might come out once or twice a week perhaps.
A social worker should come fairly soon into the new
arrangement, to greet the patient and family and begin that
important rapport; after that, visits might be once per week
unless they are needed more often. A general volunteer, such
as would sit with the patient while the caregiver ran out or
would do basic errands, might come once a week if requested.
A chaplain works in a general sense like a social worker,
and is available if the need or desire exists; if the family
has a request for a specific religious contact, the chaplain
can assist in making that connection. The schedule is worked
out between the caregiver and the various volunteers
themselves and is generally flexible.)
Is it possible to specifically request a hospice nurse who
has had experience with end-stage brain tumor patients in
(New cases are generally assigned to the nurse with the
lightest load at the moment, so it may be just luck of the
draw, but it can't hurt to ask.)
What is the feeling of your agency toward continuation of
Decadron use in end-stage brain tumor patients?
(Schools of thought vary on this, but it is good to know
ahead of time if the caregiver and the selected agency agree
philosophically, or if the agency is at least willing to
support the caregiver in this personal decision.)
Will my loved one continue taking all of the current
medications as usual?
(Probably yes, for as long as he or she is able to do so
easily. The exception will be that chemotherapy will likely
end, as this form of medication contradicts the concept of
hospice as palliative, or comfort, care.)
How will hospice care work with my insurance plan? Is there
anything I should know about that would not be covered?
(Double-check to make sure that the agency which was
referred participates with your plan, if that is a concern.
Some larger cities have more than one hospice agency; one
may be on the plan, one may not be [as is true for some
hospitals]. The representative you meet initially may not
know your plan particulars intimately but will be able to
generally discuss this with you.)
A Final Word...
The first meeting with a hospice representative can make
caregivers a little anxious, but know that those who choose
to work in hospice care are generally witty, warm, and
wonderful people. And though this may be your first
experience with hospice, it probably won't be your rep's
first experience with a loving family that is nervous and
emotional about facing this challenging time. The rep who
sits down with you is likely to put you completely at ease,
leaving you with few questions.
Keeping Your Loved One
at Home Versus in an
Keeping Your Loved One at Home
Home could be a more nurturing environment for end-stage
The patient may be happier and may feel more relaxed and at
If the patient dislikes institutional settings, the
caregiver may feel tremendously proud of being able to honor
the patient's feelings about this, as the fulfillment of a
The family can control the atmosphere, without concern for
the types of interruptions that occur in an institution (eg,
intercom announcements, a room mate who may have
At-home care eliminates the logistical efforts of driving to
a facility and remaining there for hours at a time while
visiting the patient.
At home, caregivers can still handle home-related duties
like housekeeping, dealing with the mail, and being
available for incoming phone calls even while managing the
patient's needs, so that "things don't pile up."
Loving caregivers know the patient best---from how cool or
warm the patient likes the room...to the patient's favorite
foods and music...to how comfortable the patient is with
visitors---while institutional caregivers do their best but
might miss opportunities for true comfort.
Especially when the patient has lost the ability to
communicate well, family members are often much more
successful at "reading" the patient's needs based on hand
motions or a certain look; an institutional patient may find
that communication is much more challenging with unfamiliar
nurses when family members are not present.
When children are in the home, ongoing routines can be
easier to manage, without the need to drive back and forth
between the house and the hospice facility.
When children are facing the loss of one parent, keeping the
situation at home can maintain open access to the healthy
parent during a very vulnerable time in their lives.
It can be beneficial for children to have continued access
to their loved one---to join in caregiving in whatever way
suits them---and some children may find it less frightening
to handle such things at home than in an institution, where
they must see many other ill people of various ages and
conditions whenever they visit.
Support for the caregiver can be stronger at home, where
visitors may be more comfortable stopping by to visit,
calling on the phone, or bringing over a meal.
There is less fear for the caregiver that he or she might
miss special moments, including the passing, because the
patient is in the house rather than miles away.
There are increased opportunities for special conversations,
touches, and glances that
occur spontaneously between the patient and the caregiver,
making meaningful memories.
Caregivers can be more comfortable in the home setting---can
walk around in PJs,
turn on a favorite show or music, relax while the patient
sleeps, grab a snack more
easily, etc.---and when the caregiver is comfortable and
relaxed, the quality of care is often better.
A conflict with a visiting hospice volunteer, for whatever
reason, can be easily resolved by replacing that case worker
with another; conflicts that occur in a facility can be more
difficult and it is unlikely that a "problem" nurse would be
removed from the patient's case.
It stands to reason that even highly qualified and talented
nurses might not have as much to offer a patient as those
who love him or her, offering reassurance that even a
caregiver who is "guessing his or her way along" will do
Hospice assistance all along the way, as well as at the time
of death, removes many of the more intimidating questions
and challenges one would anticipate in planning for a death
Placing Your Loved One in an Inpatient Facility
A tentative caregiver may feel ill at ease with the
responsibility of monitoring medical
issues at home, since hospice visitation may not take place
A caregiver who is aged or dealing with physical challenges
of his or her own may find
that managing home care for an end-stage patient may be,
realistically, too much to handle.
Caregivers often find it hard to shut down and give in to
sleep, at night or when the patient is resting, because they
can't help but hear every twitch and turn, so having others
handle blocks of time at a facility where the patient will
be safe can be a relief.
A caregiver who would have to handle things solo, with no
relief aside from hospice visitations, might find it
exhausting to deal with "all the shifts" 'round the clock,
and the person in this situation may feel it is more
practical to accept the help of a facility in order to
protect his or her own overall health.
The layout or size of the house may not lend it well to
in-home care, if major modifi-cations would be necessary or
if most of the living is done above the ground floor.
Some children---older children (pre-teens to teens) in
particular---may find it harder to deal with witnessing the
end stages at the house where they live. They may be:
Embarrassed and uncomfortable because of what their friends
about the situation
Put out by how the illness has negatively impacted their own
(for example, to be unable to use the phone at will when an
call is expected or to be unable to go out with friends
because no one
is available to drive them)---note that even the kindest
child, with the
greatest love for the dying patient, will occasionally
"ugly" emotions as part of the process of coming to grips
Awkward about seeing their loved one undressed or unable to
Unsure of what to say to the dying patient
Hurt to see the patient's personality changing or to see the
away" from their previously loving relationship
Full of spiritual questions that had never arisen before and
lack the maturity for just yet
Deeply sad and unable to adequately able to express their
feelings at times
Afraid that the death will be a frightening or "creepy"
Anxious about what it might feel like to continue living in
the house after
a death has occurred there
Those who are afraid that living afterward in a house where
sad memories exist may find that it feels more right to take
the situation to a facility they are unlikely to see again
after the death, allowing home to house only the best
The patient whose behavioral and personality changes have
created a volatile home situation would best be handled in a
professional facility accustomed to such cases. While this
is rare, some patients have been known to become verbally
abusive to other adults or children or have threatened
physical harm to themselves or others. There is no question
but that most loving caregivers would be under qualified to
deal with these aspects of tumor-induced dementia and that
defusing a dangerous situation is simply the smart thing to
Caregivers can come and go with flexibility and can continue
working part-time if the situation demands it, whereas an
at-home situation might require out-of-pocket nursing
expenses to cover scheduling gaps.
Those who aren't sure they can "handle this" all right and
who are uncertain about how strong they feel emotionally
might feel that being able to rely on professionals is much
less stressful and still allows them to feel loving and
Some of those who used inpatient facilities for their
end-stage loved ones expressed relief that their visits were
strictly social and happy, not having to involve the more
detached physical/medical duties that would have been
required at home but that skilled nurses were now
The patient who is afraid that their loved one would be
"taking on too much" by keeping him or her at home might be
relieved by enlisting professional care, especially in cases
when the general support network is slight and the caregiver
might be left alone after the approaching death.
A Final Word...
When making this important decision, note that it can be
easier to admit a patient from home to a facility than it
can be to have the patient released from a facility for
late-stage home care. In other words, should there be a
change of heart along the way and at-home caregiving becomes
too challenging for one reason or another, that commitment
can be reversed easily and a referral to a nearby facility
can be initiated. But having a change of heart the other way
can sometimes be more complicated, as the institutional
medical staff would have to make a number of arrangements
and deal with their own paperwork.
THE END-STAGE LANDMARKS
are signs that the brain tumor patient is moving through
the natural end-time process.
Not every patient will experience every sign. The signs
may not occur in the order listed here, although
generally, those listed earlier do occur sooner than
those toward the end of the list.
It is too difficult to guess how much longer a patient
may have at each stage, because some people will move
through several steps over a period of days, while
others will linger at one point for months without
change. For most, very generally speaking, the period
from the first serious changes through to death takes
1-4 months, but everyone is different.
Two end-stage landmarks that signal the remaining amount
of time with a high degree of accuracy are:
* when the last water intake occurs (with
death following within 3-5 days)
* when the patient's breathing changes,
becoming fainter, louder and more
mucousy, or more labored (with death
following usually within 4 hours, but
sometimes as long as half a day later)
Information about each listed change can be found by
clicking on it. On these other pages, I've included a
discussion of what to expect as well as how each change
might make both the patient and the caregiver feel
My goals in compiling this list of signs are these:
that the caregiver will have maximum support all the way through the unfolding process
that the list will serve as a reality check for times when one isn't certain what is happening but knows that things are changing
that the information will enable caregivers to make the patient as comfortable as possible
that others in the periphery of care--family members who may not have been involved in the daily journey, for instance---will have a source for understanding what to expect from here
and that understanding the general sequence of the stages will help family and friends to draw together and be present at the end, if that is their wish
Self From Others
Increased Seizure Activity
Nausea and Vomiting
Urinary Changes/Bowel Changes
Difficulty Keeping Eyes Open
Nonspecific Pain/Restless Legs
Read more about Diane's families experiences