Unlike other medical care, hospice focuses exclusively on a person’s comfort and dignity near life’s end. Initially, when serious illness strikes, stopping or altering its course is usually the primary hope of patients. But sometimes the reality is that no cure exists, or aggressive treatment for advanced illness is unsuccessful despite expert medical intervention. As treatment fails, often leaving a person debilitated by curative efforts, symptoms continue to progress. A person’s concept of hope then shifts to other priorities. At the end of life, most people hope for quality of life, comfort, and peace. They want to be near loved ones and around familiar possessions. Hospice makes these goals possible by ensuring that a person’s quality of life is the top priority. Hospice provides expert pain and other symptom management overseen by a physician and nurse, as well as support from a team of professionals, including social workers, chaplains, and certified nursing assistants.
When hospice began in the US in the mid-1970s, most people cared for by hospice had cancer. Today, while many hospice patients have cancer, the majority have other life-limiting illnesses such as end-stage heart disease; neurodegenerative diseases, such as Parkinson’s disease; lung or kidney disease; or Alzheimer’s and other dementias.
Most hospice patients receive care in their place of residence, which includes private homes, assisted living communities, and long-term care facilities. In some instances, hospice is provided in an inpatient hospice setting for people whose pain or other symptoms cannot be adequately managed in their home.
Most families tell Hospice Foundation of America that they wished their loved one had received hospice care much earlier in their illness. Hospice care can be accessed up to six months before an expected death, giving patients time with family, friends, and pets, and the possibility of extended support from the hospice interdisciplinary team. Although hospice care neither hastens death nor prolongs life, studies show that patients with certain illnesses live somewhat longer with hospice care than those with the same illness who don’t choose hospice care
With hospice, a person’s family doctor or specialist is encouraged to remain engaged in their care. The hospice physician is able to communicate with the physician, who may know the person better (medically) than anyone else, to determine the specific medical needs that will be addressed in developing an individual plan of care.
While it is the physician’s responsibility to determine whether a patient meets the medical eligibility criteria to receive hospice services, the patient (or caregiver) can initiate the discussion. Since hospices consistently hear from their patients/families that they wish they had received hospice care sooner, it is a good idea to let the physician know at the time of diagnosis with any life-threatening illness that you are open to discussing hospice care at the appropriate time. Patients and families can also contact a hospice directly to learn more about their services; it is not necessary to have a physician's referral for the initial call.
Individuals are free to leave a hospice program at any time for any reason without penalty. Re-enrollment in a hospice program is permitted as long as medical eligibility criteria is met.
While the hospice team will provide all aspects of care for the illness that qualifies a person for hospice services, hospice patients are still free to seek treatment for unrelated illnesses or conditions. For example, if someone is receiving hospice care for heart disease falls and breaks their arm, treatment for the broken arm would be available.
The purpose and benefit of hospice care is to allow for a peaceful death in a comfortable and familiar setting like home with loved ones near. While many people who choose hospice care wish to have a DNR to avoid unnecessary medical intervention and hospitalization, a DNR is not required to receive hospice care.
There are thousands of hospices in the United States. If they participate with Medicare, as most do, they are required to provide certain services to the patient and documentation to the government. In that respect, they are the same. However, hospices may be nonprofit or for-profit; they may be community-based or serve many communities, cities or states from a central location; they may be independent or part of another organization such as a hospital, health system or private company. Some communities may have multiple hospice programs serving them, all of which are independent from the other. All hospices (that participate with Medicare) meet the same basic requirements although there likely are differences from one provider to the next.
Individuals with intellectual and developmental disabilities (IDD) live much longer today and generally die of the same illnesses and conditions present in the general population. While state and local regulations may be barriers in some locations, the same hospice care provided to any patient/family is generally available to those with IDD, whether in a group home or another residential setting, and can include support for direct care staff. It is important to recognize and respect that many individuals with IDD have the capacity to participate in decisions about their end-of-life care, whether through an advance directive or in conversation, and should be informed about their illness, the options available, and the type of care those choices involve.
The focus of hospice care is solely to relieve symptoms (such as pain, anxiety, and breathlessness) at the end of life, allowing natural death to occur in peace and with dignity. The medications used at end of life are for symptom relief only and are never used to hasten death.
Hospice care is available to anyone, of any age, who meets eligibility. Government regulations surrounding care for those under 18 are different than guidelines for adults and allow concurrent care that includes efforts focused on both cure and comfort.