While most people know that hospice care is for the end of life, patients often ask us what this means in practice. When should a patient be referred to hospice?
Hospice care may be appropriate at any time during a life-threatening illness. Because the Medicare Hospice benefit (enacted by Congress in 1982) provides coverage for those thought to have six months or less to live, many people correctly think of this as the definition of hospice. We have found that the quality of life of patients and families is highest when the patient is in hospice care for as long as possible.
When the decision to start care is late, both patient and family can suffer unnecessarily.
Unfortunately, patients are entering hospice care later and later – a nationwide trend we are also seeing here at Mission Hospice. Across the country, more than half of all patients enter hospice care with fewer than three weeks to live, and 10% receive hospice care during the last twenty-four hours of life.
While our hospice teams provide valuable comfort, support, and symptom management (for example, to manage pain and shortness of breath) in these final weeks, patients and families often tell us that they wish they had known about or taken advantage of our services earlier.
The reasons for late referral are complex. Physicians can be overly optimistic about how long a patient might live. Both physicians and patients may want to fight the illness and not “give up,” an approach that can deprive the patient from addressing health care directives, mending relationships, or making financial arrangements at the end of life.
Studies have shown that hospice care is most effective when patients are with their teams for months, allowing them to build trusting relationships and participate in decisions about their care. Families have more time to prepare for the changes ahead. We as medical professionals have the opportunity to manage pain and symptoms sooner, helping to avoid crises and hospital stays.
Entering hospice care is not giving up – it is an opportunity for patients to truly live the last months of their lives. By addressing the possibility of hospice soon after a terminal diagnosis, the patient benefits from the physical, emotional, and spiritual care needed to ease his or her transition. We see every day that hospice care gives patients and their loved ones the opportunity to cherish their time together.
