What kind of services should I expect from a hospice?
Hospice services are available to patients with life-limiting illnesses who can no longer benefit from curative treatment and usually have a life expectancy of six months or less, as determined by a physician. Hospice services typically include:
- Physician services for the medical direction of the patient’s care, provided by either the patient’s personal physician or a physician affiliated with a hospice program
- Regular home care visits by registered nurses and licensed practical nurses to monitor the patient’s condition and to provide appropriate care and maintain patient comfort
- Home health aide and homemaker services, attending to the patient’s personal needs
- Chaplain services for the patient and/or loved ones
- Social work and counseling services
- Bereavement counseling to help patients and their loved ones with grief and loss
- Medical equipment (i.e., hospital beds)
- Medical supplies (i.e., bandages and catheters)
- Medications for symptom control and pain relief
- Volunteer support to assist loved ones
- Physical, speech, and occupational therapy
How does hospice care begin?
Typically, hospice care starts as soon as a formal request or “referral” is made by the patient’s doctor. Often a hospice program representative will make an effort to visit the patient on the day the referral is made, providing the visit meets the needs and schedule of the patient and family/caregiver. Usually, care is ready to begin within a day or two of a referral. However, in urgent situations, service may begin sooner.
What kind of support is available to the family/caregiver?
In many cases, family members are the patient’s primary caregivers. Additionally, hospice recognizes that loved ones have their own special needs for support. As a relationship with the hospice begins, hospice staff will want to know about the primary caregiver’s priorities. They will also want to know how best to support the patient and family during this time. Support can take many different forms, including visits with the patient and family members; telephone calls to loved ones, including family members who live at a distance, about the patient’s condition; and the provision of volunteers to assist with patient and family needs.
Counseling services for the patient and loved ones are an important part of hospice. After the patient’s death, bereavement support is offered to families for at least one year. These services can take a variety of forms, including telephone calls, visits, written materials about grieving, and support groups. Individual counseling may be offered by the hospice or the hospice may make a referral to a community resource.
What role does the physician play?
It is important to find out what the role of the patient’s primary doctor will be once the patient begins receiving hospice care. Most often, hospice patients can choose to have their personal doctor involved in the medical care. Both the patient’s physician and the hospice medical director may work together to coordinate the patient’s medical care, especially when symptoms are difficult to manage. Regardless, a physician’s involvement is important to ensure quality hospice care. The hospice medical director is also available to answer questions you may have regarding hospice medical care.
What role does the hospice volunteer serve?
Hospice volunteers enhance quality of life and help reduce the burden of caregiving. They are generally available to provide different types of support to patients and their loved ones including running errands, preparing light meals, staying with a patient to give family members a break, lending emotional support and companionship to patients and family members, and helping out with light housekeeping. Because hospice volunteers spend time in patients’ and families’ homes, it is important for a hospice program to have some type of application and interview process. In addition, hospice programs should have an organized training program for their patient care volunteers. Areas covered by these training programs often include confidentiality, listening skills, signs and symptoms of approaching death, working with families, loss and grief, and bereavement support.
How does hospice work to keep the patient comfortable?
Many patients experience pain and other distressing symptoms as illness progresses. Hospice staff receive special training to effectively anticipate, assess, treat, and prevent all types of physical symptoms that cause discomfort and distress. Because symptom management, especially pain, is such an important component of hospice, many hospice programs have developed ways to measure how well they do in this area through surveys and studies. Hospice staff work with the patient’s physician to make sure that medication, therapies, and procedures are designed to achieve the goals outlined in the patient’s care plan. That plan is evaluated frequently to reflect changes and new goals.
Is hospice available after hours?
Hospice is available “on-call” after the administrative office has closed, seven days a week, 24 hours a day. Most hospices have nurses available to respond to a call for help within minutes, if necessary. Some hospice programs have chaplains and social workers on call, as well.
Can I be cared for by hospice if I reside in a nursing home or other type of long-term care facility?
Hospice services can be provided to a person whose place of residence is a nursing home. This means the patient receives specialized visits from hospice nurses, home health aides, chaplains, social workers, and volunteers, in addition to other care and services provided by the nursing home. The hospice and the nursing home should have a written agreement in place in order for hospice to serve residents.
What happens if I cannot stay at home due to my increasing care needs and require an alternate place to stay during my final phase of life?
A small, but growing, number of hospice programs have their own hospice facilities or have arrangements with freestanding “hospice houses,” hospitals, or inpatient residential centers to care for patients who cannot reside in a private residence. It is best to find out in advance whether insurance covers this type of care and how the hospice arranges for payment.
Kat’s note: I will confirm with RCH that they have contracts with “freestanding hospice houses”
How do I ensure that quality hospice care is provided?
Many hospices use tools to evaluate how well they are doing in relation to quality hospice standards. In addition, most programs conduct family satisfaction surveys to get feedback on the performance of their programs. To assist hospice programs in these efforts, the National Hospice and Palliative Care Organization has developed recommended standards — entitled “Standards of Practice for Hospice Programs” — as one means of self- and field-evaluation.
Do state and federal reviewers inspect and evaluate hospices?
There are federal, state, and professional organizations that evaluate hospice programs to protect consumers. These organizations survey hospices to see whether they are providing care that meets defined standards. These reviews consider the customary practices of the hospice, such as policies and procedures, medical records, personal records, evaluation studies, and in many cases also include visits to patients and families currently under care of the hospice. As you research different hospice programs, ask hospice representatives to share the survey report with you and to answer any questions you may have about this complex document.
How do I pay for hospice?
Medicare, private health insurance, and Medicaid (in 43 states) cover hospice care for patients who meet eligibility criteria. As with any healthcare program, there may be “co-pays” and deductibles that families pay to receive care. Many hospices also rely on community support for donations. While each hospice has its own policies concerning payment for care, it is a tradition of hospice care to offer services based upon need, rather than the ability to pay
When is the right time to ask about hospice?
Now is the best time to learn more about hospice and ask questions about what to expect. Although end-of-life care may be difficult to discuss, it is best for family members to share their wishes long before it becomes a concern. This can greatly reduce stress when the time for hospice becomes apparent. By having these discussions in advance, patients aren’t forced into uncomfortable situations. Instead, they can make an educated decision that includes the advice and input of loved ones.