When Is It The Right Time For Hospice Care?

The Complex Decision to Start Hospice Care

Patients are eligible for hospice care when they meet a set of clinical criteria—established by Medicare and specific to their disease process—that is meant to determine a prognosis of six months or less. But for patients and families facing the difficult emotional, spiritual, and practical decision of starting hospice care—and importantly, forgoing curative care—the answer is unique for each patient and family, and depends on a number of factors.

Understanding the Role of the Patient’s Goals in Hospice Care Decisions

The first factor to consider is the patient’s goals and wishes. Many times, family members are so determined to do everything they can to extend the life of their loved one—understandably, because they are not ready to lose them—that they forget to ask the patient what they want for their remaining days of life. For example, does the patient prefer to try another round of chemotherapy or immunotherapy and potentially extend their life, along with the difficult side effects that the additional treatment may bring, or would the patient prefer to focus on their comfort and quality of life? Sometimes, patients have reached their limit of tolerating difficult treatments but will allow additional treatments because they do not want to disappoint their loved ones. Honest discussions about the patient’s goals of care are essential to deciding if additional treatments are desirable or if hospice is an appropriate option.

How Medical Treatment Options Influence the Decision to Start Hospice Care

The second factor to consider is the quality of medical options that are available to the patient. For example, a patient in their early nineties that is suffering from end-stage Alzheimer’s disease and is bedbound with limited use of language, does not have many good medical options. The additional layer of care and support that hospice would offer this patient and family far outweigh the patient and family’s decision to forgo seeing the primary care physician or neurologist, options which may not even be practical at that point. In contrast, a patient in their seventies with prostate cancer may still have a number of viable medical options that have a reasonable or high likelihood of success. Patients and families are well-served to ask their specialists to fully explain their medical options clearly so that they have a good understanding of the probability of success and potential downsides of a particular treatment option. Only then is it possible to make decisions with open eyes about continuing with curative care versus starting hospice care.

Recognizing When a Change in Care Approach is Needed

Additionally, applying reasonable judgement can also be very helpful in determining the right time to consider hospice care. Repeated hospitalizations that do not reveal anything new about the patient’s condition and do not lead to a viable course of treatment can be a sign that curative care is no longer serving the patient. Moreover, when visits to see the patient’s primary care physician or specialists are increasingly impractical—and even unsafe due to  a patient’s risk of falling—it may be time to consider a different approach. Often, family members and patients can sense when things have changed and a new approach is needed. It can be helpful to pay attention to these feelings, as they may offer valuable insight into the right course of action for the patient’s care.

The Impact of Family Dynamics and Cultural Factors on Hospice Care Choices

Lastly, culture and family dynamics play a big role in determining whether a loved one should continue receiving curative care or if the patient should be placed on hospice care. Some cultures are less open to care providers coming to the home frequently throughout the week, so more patience and education about the benefits of hospice care are warranted. In other cultures, out of a sense of love and loyalty to the patient, family members want full medical care for the patient until the end, even if that means the patient is placed on a ventilator in the intensive care unit. Still other cultures grant a great deal of decision-making authority to one family member, such as the eldest child, and this dynamic often creates a lot of pressure for this individual to always make the right decision.

Why Honest Conversations About Care Goals are Essential for Hospice Decisions

Engaging in honest conversation with the patient about their goals and wishes; discussing with the patient’s clinical team about treatment options, their chances of success, and their potential downsides; applying reasonable judgement; and involving additional family members in the decision-making process, can make situations such as these more manageable.