Making the Hospice Decision
First of all, how do you know "it's really time"? There are a few points that tend to help families realize that the disease is truly progressing and that
preparations are in order, whether that means making a decision that would end treatment, calling in the help of a hospice agency or admitting the
patient to a hospice house, inviting outer-circle relatives to make travel arrangements to see the patient, making logistical plans, or coming to terms
with the situation emotionally. These points may help serve as a reality check as an important corner is being turned:
I. The latest MRI report and doctor's opinion indicate that the disease is progressing in an aggressive fashion. This might mean:
* The tumor's size has enlarged dramatically since the last scan.
* The tumor's growth occurred over a very short time frame (perhaps weeks), indicating a new level of aggression.
* There are now many satellite tumors.
* The tumor is in a new location that now limits or complicates treatment options.
* The tumor has crossed the midline and is now located in both hemispheres, a sign of aggression and shortened prognosis.
* There is confirmation that the tumor has spread to the spinal cord.
* The patient's clinical status (how he or she appears and functions) is not strong enough to justify further treatments, nor is that status
expected to change.
* The patient's Karnofsky Performance Status is at 50 or below. (As a gauge, most clinical trials stipulate that patient candidates have
a KPS of 70 or higher.) The following chart may help you to determine the patient's status according to clinical criteria. The discussion
of hospice readiness continues below the chart.
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Karnofsky Performance Status Scale
Definitions Rating (%) Criteria
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Normal; no complaints; no evidence of disease
100 Able to carry on normal activity and to work; no special care needed
90 Able to carry on normal activity; minor signs or symptoms of disease
80 Normal activity with effort; some signs or symptoms of disease
Unable to work; able to live at home and care for most personal
needs; varying amount of assistance needed
70 Cares for self; unable to carry on normal activity or to do active work
60 Requires occasional assistance but able to care for most personal needs
50 Requires considerable assistance and frequent medical care
Unable to care for self; requires equivalent of institutional or
hospital care; disease may be progressing rapidly
40 Disabled; requires special care and assistance
30 Severely disabled; hospital/hospice admission indicated, although death
not imminent
20 Very sick; hospital/hospice admission necessary; active support
treatment necessary
10 Moribund (approaching death, being in a state of inactivity); fatal
processes progressing rapidly
0 Dead
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* Suggested treatments are, in the doctor's opinion, not anticipated to accomplish more than buying time.
* Any treatments offered are likely to take more from the patient than they are expected to give (ie, the side effects or discomfort of the
treatment are not deemed "worth it").
* The doctor has suggested that it is time to cease treatment and push instead for comfort and quality of life, or has mentioned that it
might be time for a hospice referral. (NOTE: While many doctors tended to underestimate the prognosis at the time the diagnosis was
originally given, they tend to overestimate the prognosis as the end stages approach. I can't tell you how many times medical
professionals have told a family, "It might be time for hospice. I believe there may be only 2-3 months left," and the time to death is
closer to 2-3 weeks. This may be because most neuroscience professionals don't follow their patients through the hospice period. The
physician of record at that point is often a family practice doctor working with the hospice nurses by phone only. The lack of
firsthand exposure to the dying patient affects the accuracy of the doctors' prognoses, but because these predictions tend to be shorter
than actual, credence probably needs to be given whenever the overseeing doctor initiates talk of hospice.)
* The primary caregiver's own health and well-being are being compromised, and more frequent assistance is needed than the caregiver
is capable of providing.
* The patient is requesting that treatments cease.
II. The patient's symptoms can be described as across-the-board.
When a patient is showing new or worsening symptoms, it's important to determine whether the symptoms fall under the old repertoire or
under new categories. For instance, if the patient has always had motor deficits, further motor loss doesn't mean as much as it would if the
patient is not only falling more...but now also having problems with cognition and hallucinations, increased headaches, speech issues,
incontinence, and excessive sleep. With a broader range of new symptom activity, there is significance.
III. Things are changing more rapidly.
When the caregiver can look back to several months ago, one would expect that the current picture may be different. But when he or she
can start to look back to two weeks ago, then one week ago, and see "a whole new patient," with further loss of function along the way,
this may be significant, especially when the clinical status seems to be catching up with the scan. By the time the caregiver sees a new
situation every few days, it's time to reevaluate the goals.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 fought?
* At this point, is there any chance that one therapy or another could make a difference, even if only for a little while?
* 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 enough?
* Will the patient feel pain, and can we expect to manage it?
* 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'm forced to make this decision
without the patient's input, how can I be sure it's one he or she would agree with?
* If I call in extra help, is it like admitting I'm not a good caregiver?
* I'm afraid I'm going to feel guilty and regretful no matter 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:
* Calling in extra helping hands is by no means a sellout of the patient, nor is it an admission that you aren't up to the job at hand.
* Enlisting hospice aid leaves very few people with feelings of guilt later.
* Having help can lighten your load so that you can offer the very best of your giving.
* Hospice nurses and volunteers can help you feel confident in uncharted territory most caregivers are untrained for.
* Hospice provides experience with managing pain, dealing with family issues, making final arrangements, and more.
* Hospice workers are trained to be discreet and unobtrusive, bringing aid to the caregiving situation in a quiet, gentle way,
while the primary caregiver remains just that.
* It is not the goal of hospice workers that life end sooner...only as comfortably as possible on its own natural schedule.
* Hospice workers can help you understand the body's natural shutdown process and what each new event means.
* Hospice counselors are available to speak to family members about issues related to death and grief.
* Hospice volunteers can sit with the patient so the primary caregiver can get out of the house for brief, restorative outings.
* Hospice nurses and volunteers offer many wonderful tips for comfort and care.
* Other hospice aides are available to run errands, do light housekeeping tasks, and help with bathing the patient and changing
the bed linens.
* Hospice workers are excellent listeners at a time when it can be very comforting to find a friend who understands.
* Many hospice nurses, aides, and volunteers have used these services themselves in the past, with someone they love. For many
of them---including me---this is a very personal labor of love and understanding.
AND
for a discussion of inpatient versus home hospice care:
