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 experience, etc.)?

           (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 in.)

     *    How often could we expect a hospice nurse to come out to the house?

           (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

     *    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 the past?

           (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 medica-
           tion 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

   Keeping Your Loved One at Home Versus in an
   Inpatient Facility

Keeping Your Loved One at Home

     *    Home could be a more nurturing environment for end-stage care.

     *    The patient may be happier and may feel more relaxed and at peace.

     *    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 final wish.

     *    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 disruptive habits).

     *    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 the patient's favorite foods and
           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 just fine.

     *    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 at home.

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 daily.

     *    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 know about the situation

                Put out by how the illness has negatively impacted their own freedoms (for example, to be unable to use
                the phone at will when an incoming call is expected or to be unable to go out with friends because no
                one is available to drive them); even the kindest child, with the greatest love for the dying patient, will
                occasionally express some "ugly" emotions as part of the process of coming to grips with things

                Awkward about seeing their loved one undressed or unable to perform basic functions

                Unsure of what to say to the dying patient

                Hurt to see the patient's personality changing or to see the patient "moving away" from their previously
                loving relationship

                Full of spiritual questions that had never arisen before and which they lack the maturity for just yet

                Deeply sad and unable to adequately able to express their feelings at times

                Angry, without knowing exactly why

                Jealous over having to share the healthy parent with the parent who is ill

                Upset about the lack of privacy which tends to occur when the household becomes more public to
                visiting family and friends

                Afraid that the death will be a frightening or "creepy" event

                May feel a sense of responsibility to be "the strong one" for the healthy parent or younger siblings

                Too preoccupied to concentrate on academic work, whether at home or at school

                 May take advantage of the healthy parent's vulnerability by manipulating emotions for a desired result

                Anxious about what it might feel like to continue living in the house after a death has occurred there

     *    Those who are afraid that it might be hard 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 memories.

     *    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 underqualified to deal with
           these aspects of tumor-induced dementia and that defusing a dangerous situation is simply the smart thing to do.

     *    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 attentive.

     *    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 performing.

     *    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

    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.