Hearing or reading the word “hospice” can elicit a wide range of emotional responses. The idea that someone is ready for hospice implies that they will die soon, and many people may not be ready to face that fact. However, another way to view hospice is that it is a medical service that can keep patients comfortable, cared for, and supported.
Hospice care is also more than just giving someone medicine for their pain. When a patient is in hospice care, they have a team of dedicated medical professionals working with them.
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The decision to stop all treatment of an illness is challenging, but many families and patients have a sense of relief when they decide to start hospice. You can always return to a treatment model of care if things change.
Hospice Care Explained
Hospice care is specialized medical care for people with a terminal disease. The purpose of hospice is to provide comfort and pain relief while maintaining a patient's quality of life.
Hospice care focuses on the overall or holistic wellbeing of a patient by addressing their physical condition as well as any emotional, social, and even spiritual/religious needs as death approaches. The care and comfort of family members are also an integral part of hospice.
The concept of specialized care for the dying was first introduced by Dame Cicely Saunders in 1963. But, it wasn’t until years later in 1974, that Senators Frank Church and Frank E. Moss introduced hospice legislation intending to provide federal funds for hospice programs. The legislation did not pass.
In 1978 National Hospice Organization (NHO) was established to promote the concept of hospice care. Finally, in 1982, Congress included a provision to create a Medicare hospice benefit. Much work and advocacy by the NHO and many others led to establishing a permanent hospice benefit that reflected the vital services that hospice gives patients and their families.
Many people also credit Dr. Elisabeth Kübler-Ross’s book, On Death and Dying, which identifies the five stages that patients go through when they are dying (the same as the five stages of grief) as instrumental in educating the public about dying.
People familiar with the concept of hospice think of it as primarily a team of professionals who manage pain and provide comfort to the dying. This is true, but hospice does so much more. The other purpose of hospice is to give comfort and support to the dying and their family. This takes the form of emotional and spiritual reassurance and connection to resources.
A hospice team comprises various medical personnel who specialize in the complex needs of a person on the cusp of dying. Although each person on the team has specific responsibilities, they work together to ensure that the patient and their family have the comfort and resources they need.
- Physician services for managing and monitoring medications and recertifying for hospice, if necessary
- Nursing approximately three days a week but available on call 24-7.
- Nurses assess pain and manage symptoms.
- Medical equipment like hospital beds, wheelchairs, or walkers
- All medical supplies
- Aides for bathing, dressing, and homemaker services
- Physical and occupational therapy, if needed
- Speech therapy to help with problems such as swallowing
- Social worker services for counseling and connecting to services
- Dietary consultation for special diets related to swallowing problems
- Emotional and spiritual counseling for the patient and family as they cope with grief and loss.
- These services are usually offered through a hospice chaplain.
- Short-term in-patient care in a skilled facility, which is a service designed to provide family members with a short break from caring for their loved ones at home
Hospice care versus palliative care
There is understandably a great deal of confusion about the difference between hospice versus palliative care. Most people tend to confuse the use of palliative care, in particular. These are the main differences between them.
- Requires a physician to certify that a patient has six months to live due to a terminal diagnosis.
- Patients switch from their regular doctor to a team of medical staff focused on maintaining their comfort.
- Some patients may transition from palliative care to hospice if their illness has become imminently terminal.
- Palliative care does not require a terminal diagnosis.
- Palliative care starts at any time during the course of an illness.
- The focus of palliative care is to provide comfort during the treatment of an illness.
- Treatment during palliative care might be curative, or it might not be.
- The emphasis in palliative care is on symptom management.
- Palliative care also addresses emotional suffering and spiritual needs.
- Some people receive palliative care for years and may go on and off services.
- You can keep the doctors you want while working with the palliative team of health providers.
- Palliative care treats the patient with dignity during a prolonged illness. The emphasis is on the person, not the disease or condition.
- Some people transition from palliative care to hospice once the team determines that the illness has become imminently terminal.
Hospice Care at Home or in a Facility
Most people receive hospice care at home because that is where they are most comfortable. However, since hospice does not provide round-the-clock care, families, in this case, opt for a hospice facility where 24-hour care is available.
Qualifying for hospice in a facility has the same criteria as qualifying at home. A physician must certify that the patient has a terminal condition with six months to live.
Hospice facilities provide the same care that you would get at home, but nurses staff the facility at all times, and aides are always available. The main difference is how Medicare pays for hospice at home versus in a facility.
In a facility, there is a daily room and board rate that the patient is responsible for. Medicare covers all other services and medical equipment.
Hospice Care FAQs
Questions and concerns about hospice are common. Confusion about how hospice works can lead some families to wait too long to start hospice or not take advantage at all. These FAQs will clarify some of the misunderstandings about hospice and help you make a decision.
Q: Does hospice always mean death?
Although a physician must certify that a patient has a terminal condition with approximately 6 months to live, no one knows when a person will die. There are cases where people in hospice live for years or recover sufficiently to go off of hospice.
Q: How long is a person usually in hospice?
The answer to this depends entirely upon when a person enters hospice care. The later they wait, the shorter their time on hospice might be. The average length of stay on hospice in 2018 was 77.9 days, but some people are only in hospice for a few days or weeks.
Hospice staff are very experienced in assessing various disease processes and can usually predict when a patient will die within several days.
Q: When is hospice usually recommended?
Hospice is recommended when continued treatment is no longer expected to significantly impact a disease or prolong life. This decision can be heart-wrenching for families because it can feel like giving up and giving in. But, when a person decides that treatment is no longer helpful and interferes with quality of life, hospice care can be a relief.
A good example of this is chemotherapy for cancer, which has significant adverse side effects. Many patients decide to forgo chemotherapy and radiation because there is no hope for meaningful recovery. While in hospice, they can focus on being comfortable and connecting with family and other loved ones.
Q: How much does hospice usually cost?
Medicare pays for all of the costs of hospice at home, assisted living, or other senior living communities. If you are in a residential hospice center, you will be responsible to pay for room and board. The charge is usually a daily rate.
Q: Who usually pays for hospice care?
Most private insurance plans model their hospice insurance coverage on the federal Medicare hospice benefit program and cover 100 percent of hospice costs. It is essential to contact the insurance provider for specific details on the patient’s plan and what costs are not covered.
What Does Hospice Care Look Like?
Now that you have a better idea of what hospice is and how it can help, hopefully, you and your family can make an informed choice if you are presented with such a decision. Hospice care can create an atmosphere of care and compassion that will give you the time you need to spend with your loved one.
- Parker, Jim. “Average Hospice Length of Stay on the Rise.” Hospice News, Aging Media Network, 25 November 2019, hospicenews.com/2019/11/25/average-hospice-length-of-stay-rose-during-2018/
- “History of Hospice.” National Hospice and Palliative Care Organization, www.nhpco.org/hospice-care-overview/history-of-hospice/
- “Is Hospice Care Outside the Home Right for You?” American Hospice Foundation. americanhospice.org/learning-about-hospice/is-hospice-care-outside-of-the-home-right-for-you/
- “What is Hospice Care?” American Cancer Society, American Cancer Society, 10 May 2019. www.cancer.org/treatment/end-of-life-care/hospice-care/what-is-hospice-care.html