Hospice care, by definition, is reserved for terminally ill patients. Terminally ill patients do not need curative treatment, which is focused on rehabilitation so the individual can recover from his or her illness or condition. As such, patients who elect to begin hospice care have decided that they no longer wish to try to recover from their illness, but instead have opted to try to remain as comfortable and pain-free as possible as their illness runs its final course. Although the motivations that underlie hospice care are relatively clear, the point at which hospice care should be used remains an area of a great deal of confusion and debate.
When is Hospice Called in?
A 2009 article published in the New York Times illustrates why it is important to understand the need for open and frank discussions with loved ones and healthcare providers on when hospice should be used. “But even if you did call, odds are you’d have waited so long that the hospice team would have very little time to do what it is good at doing — providing care and comfort to the dying and their families.” Overall, the median length of hospice care is just 20 days, and almost one-third of patients enroll a week or less before the end of their life.
If one is in search of a trigger point that would require hospice care, they are likely to be disappointed. They are unlikely to find a single condition or point in time in the progression of an illness in which one can definitively say that it is time to call in hospice care. Rather the decision to use hospice care is normally the culmination of many conditions that can all lead to the conclusion that hospice care is needed.
It is useful to look at the criteria hospice providers and insurance providers require before providing and paying for hospice care. Most hospice services require a doctor’s certification that the end of life from an illness is likely to occur within six months before services will be made available. Similarly, individuals who are covered by Medicare Part A (Hospital Insurance) and who meet the following conditions can receive covered hospice care.
- Both the hospice doctor and a treating doctor (if one is used) certifies that the individual is terminally ill (with a life expectancy of 6 months or less)
- The patient accepts palliative care (for comfort) instead of care to cure the illness
- The patient signs a statement choosing hospice care instead of other Medicare-covered treatments for a terminal illness and related conditions
Private insurance hospice benefits typically have different guidelines that might allow for hospice care to be considered much earlier than the last six months of life. The conditions listed above involve the technical conditions that offer a patient the chance to enter hospice; however, some personal factors also dictate when a patient is ready for hospice.
Based on the criteria presented above, one can conclude that if a patient is still benefiting from curative treatment, it would not be an appropriate time to call in hospice care. The individual patient and the particular disease or illness that affects them will largely affect when and whether a patient is no longer benefiting from curative treatment. For some terminally ill patients, there is a point when treatment no longer works. Continued attempts at treatment may even be harmful or unnecessarily painful, or, in some cases, treatment might provide another few weeks or months of life but will make the patient feel too ill to enjoy that time. While hope for a full recovery may be gone, there is still hope for as much quality time as possible to spend with loved ones, as well as hope for a dignified, pain-free end.
Often, the presence of a number of symptoms or certain medical events can provide a guideline for determining when hospice care may be appropriate. The following are signs that a patient or loved ones may want to explore options with hospice care.
- Multiple trips to the emergency room to have the patient’s condition stabilized
- Rapid increases in symptoms that affect the quality of life
- Multiple admissions to the hospital in a short period of time coupled with worsening symptoms
- Failure of recognized or alternative curative therapies to stem the progress of the terminal illness
- The patient wishes to remain at home rather than spend time in the hospital
- The patient has clearly decided that the discomfort caused by curative treatments outweighs the benefits received from these treatments
- Increased or uncontrolled pain
- Progressive weight loss
- Decline in ability to perform activities of daily living (ADLs)
- Frequent infections
- Increased weakness and/or fatigue
- Increased skin problems
- Withdrawal from social activity
The signs above represent a list of general indicators that a patient may be medically ready for hospice care. In addition to the general signs presented above, medical providers rely on an extensive evaluation criteria that is specific to a particular disease in order to evaluate whether a patient is medically appropriate for hospice care. These criteria will vary depending on the patient’s illness or disease.
Regardless of the medical evidence present, the decision to open discussions with a patient’s medical care team about whether it is time to begin hospice care can be difficult due to barriers that often hamper open discussion about when is an appropriate time for hospice care.
Under Medicare and other insurance payer guidelines, a physician must certify that a patient will live fewer than 6 months if his or her illness runs the usual course. The problem in this sense is getting to the point of discussing whether it is time for hospice care use. This discussion is often difficult for any number of reasons; the most important barrier often involves both the patient and caregivers arriving at a consensus that it is an appropriate time for hospice care.
A recent survey conducted by a professor at the Harvard Medical School asked 4,368 U.S. doctors when they would discuss hospice with a hypothetical patient with cancer who was expected to live for another four to six months and currently didn’t have any symptoms. According to the study, “About 65 percent of doctors strongly agreed they would enroll in hospice care if they were terminally ill. Another 21 percent somewhat agreed they would enroll. Only about 27 percent of doctors said they would discuss hospice “now” with the hypothetical patient, however.” The others said they would wait to discuss hospice until the patient was hospitalized, the patient had symptoms, the patient’s family brought it up, or until there were no more treatments to offer. The result from this study perhaps indicates that there may not be a specific rule for when a physician indicates that a patient should enter hospice care. Given this study, one should not be shocked that timelines vary significantly for discussing and deciding when to call in hospice.
In many cases, there is a disconnect between what the patient feels is a plausible outcome from treatment and what the reality may be. In this case, obvious signs that hospice would be an appropriate course to take are minimized or ignored due to unrealistic expectations regarding treatment outcomes. However, this is not to state that if a patient wishes to continue curative treatment, they should not receive it; however, it is important to weigh all options and consider the patient’s wishes.
Given the importance of evaluating medical indicators that a patient may be medically ready for hospice, it is vital to also weigh any objective signs against the patient’s goals. In an article published in the New York Times, Dr. Stacie K. Levine, a geriatrician and palliative care physician at the University of Chicago states that it is important to consider the patient’s goals and wishes. Dr. Levine advises: “Ask yourself if you would be surprised if the person you’re caring for would die within six months. Moreover, ask the patient about his or her goals. If he or she feels that all the treatment options have been exhausted but the disease is still progressing, and the patient is tired, doesn’t want to go back into the hospital, and just wants the comfort of their bed — then it may be time to go home.” Ultimately, it is the patient who must weigh their options with the help of their care team and loved ones.
The decision to request hospice services can be one of the most difficult conclusions when considering all of the medical decisions a person may make throughout their lives. However, one should not fall victim to the mistake that hospice care is similar to giving up; rather, it is a phase of care that focuses on comfort and symptom management rather than focusing on curative treatments. Also, it is important to consider the fact that a patient may decide after he or she has entered hospice that they may want to resume curative treatment. Regardless of the situation, the decision to call in hospice should be made in conjunction with the patient, their loved ones, a hospice provider, and the patient’s care team. When viewed in light of the various opinions on the patient’s well-being and the patient’s goals, the decision to call in hospice can be made in a clearer and more decisive fashion.