All About Hospice
What is Hospice?
Hospice is a philosophy of medical care for patients with a terminal (life-limiting) illness, as well as support and education for their families and caregivers. The goal of hospice is to increase the patient’s quality of life for as long as possible. The word hospice comes from the Latin word "hospitium," which means guesthouse. It originally comes from the medieval custom of hosting religious pilgrims who were wounded, tired or sick during their pilgrimage, by giving them rest and comfort on their journey. It was not until the 1960's that a British physician, Dr. Cicely Saunders, began the modern hospice idea and founded St. Christopher's hospice near London. Today, hospice offers open communication and a teamwork approach to care for patients and their families. The hospice team helps with the physical, psychosocial, and spiritual needs of the patient and caregivers.
Hospice focuses on providing the best possible quality of life for patients faced with a terminal illness. Hospice isn’t “giving up.” It is a shift in the focus of care, from life-extending or potentially “curative” treatments and tests to things that will improve the person's quality of life. The hospice team focuses on things such as pain relief, nausea management, and controlling other symptoms. A hospice team works with the entire family to provide emotional and spiritual support, as well as bereavement support after a patient dies. Hospice attempts to make the most of every day and to teach that death is a normal part of life.
How does hospice work?
Hospice care is provided by a team, which includes physicians, nurse practitioners, physician's assistants, nurses, social workers, counselors, chaplains, case managers, and trained volunteers. The care they provide focuses on the needs of the patient and their family. The patient's oncology team can refer a patient to hospice care, which can occur in a patient's home or at an inpatient facility.
The patient's family is at the heart of day-to-day caregiving when a patient chooses hospice care. But there is an entire team of health care professionals to support the patient and family. A physician, who specializes in symptom management, oversees the patient's care. A nurse practitioner or physician’s assistant may also be involved in your care. When care is provided in a home, nurses make regular visits to assess and manage the patient's needs. The nurse keeps in touch with the whole hospice team regarding the patient's condition and other needs. The nurse and doctor can order all medications related to your hospice care from a pharmacy that works specifically with hospice. Home health aides can help patients on a limited basis with activities of daily living including bathing, dressing, and eating. Case managers can arrange for medical supplies to be delivered to the patient’s home, such as a hospital bed, portable toilet, walker, wheelchair, etc. Counselors and social workers not only provide support to the patient but to the entire family. They help the family cope with the patient's illness, the dying process, and death. When care is provided in an inpatient facility, the entire team is available as needed, with nursing care present around the clock.
When is the right time to consider hospice?
Hospice is appropriate at any time when the goals of care have changed from curative therapy to palliation (relief) of symptoms. The decision to start hospice is a very personal one and should be discussed with your healthcare team, family, and friends. Ideally, the concept of hospice should be presented while the patient is able to express their own opinions and wishes, though this is not always the case. The patient, the family, or the physician can request hospice information, or a referral visit from the hospice team at any time. Patients should understand that embracing hospice does not mean that you, the doctor, or your oncology team have "given up.” Your physician still has an active role in the hospice process and in ensuring your comfort and quality of life.
Hospice is typically for patients who have a limited life expectancy – most insurers require a healthcare provider to state that the patient's life expectancy is six months or less. However, if the patient lives for more than 6 months, they will not be "kicked out" of hospice. At that time, their healthcare team can discuss if hospice is still appropriate for them and, if so, again state that the patient has a six-month life expectancy.
What is the cost of hospice?
Most health care plans offer some type of hospice benefit. Patients over age 65 qualify for the Medicare Hospice Benefit in the United States and Medicare covers most aspects of hospice care. For those younger than 65, many private health plans have some type of hospice coverage. You may need to review your policy, call your insurance company or meet with a social worker to determine the coverage provided on your plan. Medicaid covers hospice care in nearly all states. Even if patients do not have hospice coverage, many hospices will still provide care for people. Typically, hospices have a financial specialist on staff to answer questions about getting financial assistance, which may come from donations, grants, or other community fundraisers.
What are some common misconceptions about hospice?
Hospice may hasten (bring about) death. Hospice neither speeds up nor puts off a person's death. Hospice provides individualized service to the patient and his/her family so that everyone can prepare for the inevitable death. Hospice tries to make their remaining life and eventual death dignified and noble. Hospice care focuses on improving or maintaining a good quality of life during the final phase of life.
Once I sign up, I can never get treatment for my cancer again. Another misconception is that a patient cannot decide to stop receiving hospice services once enrolled. Should a patient's condition improve and/or the patient decides to pursue further treatment, such as a clinical trial or a new treatment, the patient can be discharged from hospice at any time.
I am not of a certain religion, so I cannot participate. Some believe that hospice is affiliated with certain religious beliefs. Actually, hospice is not associated with any particular religion. It simply provides medical, emotional, spiritual, and psychological care in a manner most beneficial to the patient and his or her own beliefs. Hospice services would never interfere with any patient's religious convictions or beliefs. All patients are encouraged to seek out and freely practice their faith and spirituality. Therefore, if desired, having the participation of one's own clergy is also welcomed.
I have to wait for my healthcare provider to offer hospice. The patient or their family members can bring hospice into the discussion at any time. Some healthcare providers may hesitate to bring up hospice, for fear that the patient will not be open to the idea. If the patient is interested in learning more about hospice options, they should not hesitate to discuss this with the healthcare team.
I have to “give up” seeing my oncology doctor. A common myth is that you can’t see or communicate with your doctor or care team once you elect hospice care. Your oncology team continues to play a role in the coordination of care and if you feel “up to it” you could go in for an office visit—but you can always stay in contact with them via phone.
Questions to Ask Your Care Team About Hospice care
- How does hospice care differ from palliative care?
- Why am I being referred for hospice care?
- Can I continue to receive chemotherapy and radiation while receiving hospice care?
- Does my insurance cover hospice care?
- Where is hospice care provided?
- Who provides hospice services?
- What kind of support will my family receive as part of hospice?
- Does hospice provide 24-hour care?
- How will the hospice team manage my pain and other symptoms?
- Can I still see my doctor while receiving hospice care?
- Can I be discharged from hospice if I want to switch the goals of my care?
- Will hospice provide equipment and medications I need to be comfortable?
- What ancillary services are provided with hospice – music therapy, spiritual care, integrative therapies, and pet therapy?
- What if there is an emergency in the middle of the night – what is the response time and emergency plan?
- Do I have to have a do not resuscitate (DNR) order to receive hospice care?
Does hospice provide help for caregivers/family?
Hospice agencies understand that caregivers' needs are often overlooked in everyone's focus on the patient. The same emotional and spiritual support that is offered to patients is available to their caregivers. Some hospices provide respite care for caregivers, which gives them a temporary break. Often, respite care allows for around-the-clock care of the patient so the caregiver can step away for a little while. This can be essential in terms of relieving stress, restoring energy, and promoting balance in his/her life. The caregiver can work with the hospice to arrange for respite care by having in-home care or care at a skilled nursing facility. The breaks could be for a few hours or a few days. By giving some relief from the physical and emotional stress that can come with caring for a loved one, the caregiver can come back rested and provide better care for the patient. In addition, there are support groups for caregivers that one may find beneficial.
Does hospice provide support after the patient’s death?
Caregiver grief and emotional distress do not end with the death of their loved one. Hospices offer continued support for caregivers for as long as a full year following the death of a loved one. Most hospices organize bereavement and support groups for anyone who experienced such a loss, regardless of whether your loved one was a patient in their care. Some hospices can provide assistance in financial planning for a funeral. Bereaved family members are often ill-equipped to organize funeral arrangements and hospice volunteers can provide assistance in these plans.
Resources for More Information
Caring Connections (a program of the National Hospice and Palliative Care Organization).
The American Cancer Society. (2019). What is hospice care? Retrieved from https://www.cancer.org/treatment/end-of-life-care/hospice-care/what-is-hospice-care.html
Hospice Foundation of America. (2018). What is hospice? Retrieved from https://hospicefoundation.org/Hospice-Care/Hospice-Services