What is hospice care?
Hospice is a type of end-of-life care geared towards keeping a patient comfortable and improving their quality of life, rather than seeking to cure them of disease. More than 1.4 million Medicare beneficiaries were enrolled in hospice care for one day or more in 2016, according to the National Hospice and Palliative Care Organization, and research shows it may help alleviate suffering and possibly even allow you to live longer.
In hospice, the focus shifts from treatments aimed at a cure to medical care aimed at comfort and support for patients and their families. A fundamental belief in hospice care is that everyone has the right to die pain-free and with dignity.
Care is provided by an interdisciplinary team that includes a hospice doctor or medical director, as well as nurses, social workers, bereavement counselors, home health aides, clergy and volunteers. All of these people are specially trained in hospice care and management and all the unique issues that surround death and dying.
How hospice works
The vast majority of all hospice care is provided where the patient currently lives, whether it’s their home (56 percent) or a nursing home (42 percent). Less than 2 percent receive care at a freestanding hospice facility or in a hospital, according to NHPCO.
Generally, a family member serves as the primary caregiver, with members of the hospice staff visiting regularly (perhaps two or three times a week, or more or less often depending on your specific needs) to check in on the patient, adjust medication, and provide any other services needed. The hospice team develops a care plan to address a patient’s needs for pain management and symptom relief, and remains on-call 24/7 and available in case of emergencies.
Services provided can include:
- Medical care to manage symptoms like pain. This can include palliative treatments such as radiation (for example, to reduce pain caused by cancer), removing excess fluid, or even blood transfusions.
- Counseling and social support to help you and your family come to terms with the emotional, psychological, and spiritual aspects of dying
- Medications, medical supplies and equipment
- Instructing caregivers on how to administer medication and provide other types of care
- Short-term inpatient care when pain or other symptoms can’t be managed at home
- Services like speech and physical therapy
- After death, grief support and counseling for the family
Sometimes, a person will need continuous home care (CHC), which is nursing care for eight to 24 hours a day to manage pain and other symptoms, or even temporary inpatient care if CHC isn’t sufficient. Respite care may also be available for several days at a hospital or hospice facility if the primary caregiver needs a break.
When hospice is appropriate
Hospice is available for anyone who gets physician certification that they have a terminal illness and have less than six months to live. You can leave hospice at any time — for example, if your disease improves, or you decide that you once again want to pursue a curative treatment.
Research shows that many people put off hospice care for too long. A Yale study published in 2017 in the Journal of the American Geriatrics Society found that the average stay in hospice was just 12.5 days, suggesting that physicians may need to discuss the possibility sooner.
Benefits of hospice
Patients who opt for hospice generally live longer and experience a better quality of life. One 2007 study published in the Journal of Pain and Symptom Management found that terminally ill patients with either congestive heart failure or cancer who received hospice services lived, on average, 29 days longer than those who did not. And debilitating symptoms — like fatigue, pain, shortness of breath, depression and anxiety — all decrease substantially after hospice begins, according to a 2016 study published in the American Journal of Medicine.
Read more: 7 benefits of hospice care
How to pay for hospice
Medicare, Medicaid, and most private health plans cover hospice services. If you want to receive benefits through Medicare, the provider you choose must be Medicare-certified. While Medicare requires that a patient has a prognosis of less than six months, you can still receive care after six months is up. A physician just needs to recertify every 60 days that you still meet eligibility requirements. There is no limit to the number of 60-day recertification periods.
The hospice benefit will cover everything related to the terminal diagnosis, though specific coverage can vary by hospice and your insurance plan. Medications and treatments for other conditions not related to that diagnosis can still be covered by health insurance outside of the hospice benefit.
How to find a hospice provider
Your doctor or local hospital can provide recommendations, as can friends. The National Hospice and Palliative Care Organization (NHPCO) can help you find a provider in your community. Most states also have a state hospice society or network. You can check the website for your state’s department of health to see if a hospice has received any citations, and Medicare’s Hospice Compare site allows you to see quality ratings for every Medicare-certified hospice.
Written by Hallie Levine and reviewed by Keith Lagnese, MD