Caregivers for loved ones who are seriously ill often wonder, “When is a person ready for hospice?” While the nature and timing of end-of-life care differs for each person, many families are finding that it’s best to inquire about hospice care sooner rather than later.
End-of-life care decisions are often challenging and time-sensitive. Learning about how one can qualify for hospice and the specific services these organizations can provide will help minimize anxiety and confusion surrounding these important choices.
Who Qualifies for Hospice?
The National Hospice and Palliative Care Organization (NHPCO) is committed to protecting each person’s right to die with dignity and without pain. Special needs are best handled by specialists. Hospice professionals specialize in end-of-life care and should be called upon during the first stages of a terminal illness to ensure patients and their family members can benefit from all the services hospice has to offer.
A person of any age is eligible for hospice care after being certified by a physician as having a life expectancy that may be six months or less, depending on the course of their disease. Another requirement is that patients who elect hospice must forgo curative treatment, either because they no longer wish to receive it or because it is no longer effective.
For example, a patient is diagnosed with advanced cancer and given approximately four months to live. In order to qualify for hospice services, they must agree to only receive care for symptom management and the enhancement of their quality of life. This “comfort care” is provided in lieu of aggressive interventions like chemotherapy and/or radiation therapy.
Hospice services are covered by Medicare, Medicaid and most private health insurance plans, although many non-profit palliative care providers generally offer services regardless of a person’s ability to pay.
How Long Does Hospice Last?
Of course, despite educated guesses regarding life expectancy, even terminal health conditions do not always progress in a predictable manner. If a patient lives beyond six months after admission into a hospice program, they can receive services as long as a physician continues to document their eligibility. In some rare cases, individuals have remained eligible and received hospice care for a year or longer. Some patients even “graduate” from hospice if their condition improves.
Sadly, many families are unfamiliar with hospice and hesitate to request services even though they might be beneficial for their loved ones. According to the most recent data published by the NHPCO, over half (53.8 percent) of Medicare beneficiaries who received hospice care in 2018 were enrolled for 30 or fewer days.
Some patients do decline suddenly and unexpectedly, making it difficult to find new care providers that are suited to handle their evolving needs. However, delaying hospice enrollment is far more common and deprives patients of care aimed at maintaining their comfort and quality of life. Discussing end-of-life care goals with a patient and their physician(s) early on will ensure that hospice is brought in at the appropriate time and their passing is as calm and dignified as possible.
How to Start Hospice Care
Anyone—whether it is a family member, a friend, a member of the clergy, or a physician—can refer someone to hospice. Most patients are referred by a health care professional, but a call to a local hospice provider can begin the referral process as well. A hospice nurse will usually visit to ensure the patient qualifies, go over services the provider offers and create an end-of-life care plan. Once a formal request is made, most palliative care organizations begin providing care within a day or two.
Goals of Hospice Care
Hospice endeavors to make the transition from life to death as comfortable and easy as possible. Individual care plans are developed to ease both physical and emotional pain and to meet spiritual needs if desired. This can help the patient and their family “put their lives in order” and make the final stage of life very meaningful and intimate.
This type of care enables families to navigate the end of life together in the setting that is most comfortable for them. In most cases, the patient remains at home with full access to family and close friends while under professional medical supervision. An interdisciplinary care team is assigned to each hospice patient, which may include a physician, nurses, a pharmacist, a social worker, a bereavement counselor, a chaplain, volunteers, and massage, art and music therapists. Each team member is entirely focused on the person, not their illness. Their collective goal is ensuring that all physical, emotional and spiritual needs are met. With the hospice team spearheading care coordination, the family is free to enjoy more quality time together.
Managing Pain and Other Symptoms
Addressing pain and other symptoms in the early stages, rather than waiting until they become severe, is a priority. Therefore, it is crucial to begin hospice care as soon as one is ready and meets the eligibility requirements. Hospice care teams always work to manage bothersome symptoms, such as pain, nausea and anxiety, as expediently and efficiently as possible.
In addition to determining the appropriate medications for pain and other symptoms, members of the care team also get creative when identifying the best ways to administer treatments. Finding new therapies, new uses for conventional medications and new techniques for improving comfort care is an ongoing goal for these medical professionals, therapists and volunteers.
Enhancing Quality of Life
Whether a patient is receiving care at home, at an inpatient hospice house or in another health care facility, hospice workers ensure that their environment is safe and accessible, meets their needs and adds to their quality of life.
While it may not seem feasible for a dying person who requires intensive care to receive it in their own home, hospice programs specialize in supplying care and supplies in nearly any space. For some patients, a hospice-provided portable oxygen tank gives them greater mobility and freedom to stick to their daily routines. An adjustable hospital bed at home may be essential for a good night’s sleep. Regardless of a patient’s personal needs, the earlier one enters hospice care, the sooner they can receive the services, medications and durable medical equipment needed to help them maintain their dignity and comfort.
Hospice also provides for special wishes to make every day count. Care team members are quite creative, and each day they consider how they can make a difference in their patients’ journeys. I can recall one woman in particular who was receiving care in one of our hospice houses. Sadly, she was too ill to go to her daughter’s wedding. But, in a day’s time, her care team planned an event that she could attend. They invited family and friends to the facility, supplied a wedding cake and rolled the patient’s bed into our chapel. One of our chaplains conducted the wedding ceremony at the foot of her bed. Our entire staff worked together to ensure this woman was able to see her daughter get married.
It is important for families and other health care professionals to understand that hospice opens the door to a quality of life that would otherwise be unavailable to many who are approaching death. Our goal is to do everything we can to support our patients and their families. We provide the equipment, care and support that patients need to continue being as active and comfortable as possible for as long as possible.
Supporting Family Members
Hospice provides a critical service for family caregivers as well: Medicare-covered respite. During short-term respite care, a hospice patient stays in a Medicare-approved facility, such as a hospice house, hospital or nursing home. The stay may last up to five days at a time, and there is no limit to the number of stays a family can use. Respite is invaluable to many caregivers who spend countless hours sitting vigil with their loved ones.
Additional support for patients and their caregivers is also available from many providers in the form of a 24-hour on-call staff. Nurses, home health aides and other professionals are available to make house calls, answer questions, adjust medications, schedule other treatments and assist with personal hygiene and care. While some patients require occasional home visits by their care team, others may require continuous care during periods of medical crisis, which hospice can provide as well.
Lastly, many hospice organizations offer free bereavement services for surviving family members after a patient dies. Support groups, grief counseling and memorial events are just a few of the valuable resources that providers typically make available to their communities.
Making the Hospice Decision
There is no pre-determined checklist of services that every hospice recipient receives, and there are no real limits on how providers meet the needs of their patients and families. The care and support that these palliative care organizations provide is entirely personalized and invaluable to many.
While the decision regarding when to begin care is highly personal and variable, seeking a referral sooner rather than later will help ensure that one passes comfortably and with dignity. If you are considering hospice care for yourself or a loved one, don’t hesitate to speak with a physician or hospice provider about end-of-life care planning and goals.