Rating the Patient’s Level of Function

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:

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.

Karnofsky Performance Status Scale Definitions Rating (%) Criteria

Normal; no complaints; no evidence of disease

  • Able to carry on normal activity and to work; no special care needed

  • Able to carry on normal activity; minor signs or symptoms of disease

  • 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

  • Cares for self; unable to carry on normal activity or to do active work

  • Requires occasional assistance but able to care for most personal needs

  • Requires considerable assistance and frequent medical care

Unable to care for self; requires equivalent of institutional or hospital care; disease may be progressing rapidly

  • Disabled; requires special care and assistance

  • Severely disabled; hospital/hospice admission indicated, although death not imminent

  • Very sick; hospital/hospice admission necessary; active support treatment necessary

  • Moribund (approaching death, being in a state of inactivity); fatal processes progressing rapidly

  • Dead

(Cont’d.) The latest MRI report and doctor's opinion indicate that the disease is progressing in an aggressive fashion. This might mean:

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.

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.

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.