Hospice care is non-curative end-of-life care provided by an interdisciplinary team of doctors, nurses, aides, social workers, volunteers, chaplains and mental health professionals. Hospice teams work together to provide patient-centered medical, psychological and spiritual support. The goal of this type of care is to help terminally ill patients maintain peace, comfort and dignity throughout the dying process. Hospice addresses all symptoms of a disease, with a special emphasis on minimizing anxiety, pain and discomfort.
Hospice organizations can be non-profit, for-profit or government-owned. There are usually a few different hospice providers available in a given area, so it is important to carefully research all options prior to initiating hospice care. Referrals and word of mouth can be very helpful when initially searching for reputable hospice providers. Use the following checklist of questions to help you further evaluate local programs and ensure you choose the best hospice care available.
Hospice Care Checklist
Management
- Who owns the hospice service?
- How long has the manager been running this hospice organization or others like it?
- Is the hospice a non-profit, for-profit or government-operated organization?
- Can you view the organization’s most recent financial report? (This will help you see how the hospice provider uses donations and/or earnings.)
- Who is the best contact for additional day-to-day questions?
State and Medicare Certification
- What accreditations, certifications and/or licensing does the provider have? (In addition to city and state licensing requirements and Medicare and Medicaid certification, a hospice program may choose to pursue accreditation through an independent non-profit organization, such as the Joint Commission, the Accreditation Commission for Healthcare or the Community Health Accreditation Partner.)
- What were the results of the provider’s last state certification review/inspection? What problems were uncovered? How have the problems been resolved?
Staffing
- How many staff members are assigned to each patient? Per day? Per shift?
- How does this provider’s staff-to-patient ratio compare with other programs in the area?
- What qualifications are required of staff members, including RNs, aides and volunteers?
- Does the program have at least one full-time social worker on staff?
- Are there full-time mental health professionals and other therapists on staff?
Services and Policies
- What services are offered?
- What services are included in the basic daily rate?
- What services are not covered by the basic daily rate?
- How many patients does the provider care for?
- How are patients included in decisions regarding their care?
- How do you include family members/caregivers in decisions regarding patient care? How do you communicate with them?
- What services will family members/caregivers be responsible for providing?
- What resources are available to a family member who chooses to care for the patient at home?
- If the family or patient decides that in-home hospice care isn’t the best option, can the hospice care plan be re-evaluated? Can additional help be provided?
- Does the program provide a written statement or contract outlining the terms of hospice care? Is the contract negotiable?
- How often is the patient’s plan of care reviewed and revised?
- What policies/processes are used for resolving issues?
- Does the hospice program provide assistance with activities of daily living (ADLs)? (These include dressing, bathing, eating, grooming, toileting, mobility and transfers.)
- If the hospice patient requires high-technology therapies or devices to manage pain and other symptoms, will this be an issue?
- What are the available support services for family members/caregivers both during the patient’s dying process and after they have passed?
- Does the program offer respite care for family members?
- Are staff members familiar with how to handle your loved one’s unique medical conditions? For example, are they trained in dementia care? Are they knowledgeable about Parkinson’s disease or MS?
Visits
- Does the organization provide home visits?
- Does the provider work within a designated a geographical service area?
- Can hospice care be provided in a setting outside of a private home, such as an assisted living facility, a nursing home or a hospital?
- How often do aides, volunteers, physicians, nurses and other hospice team members visit during the day? During the week?
- Are services available 24/7, including on weekends and holidays?
- Can the patient or family request additional visits when needed? How?
- How long does a visit with a health care provider typically last?
- How many night staff members are on duty or on call?
- How are emergencies handled?
- How quickly can a staff member arrive on short notice?
- What hospital or facility is used if inpatient hospice care is needed? Is the affiliated medical center in-network with the patient’s insurance company or Medicare/Medicaid?
- Does the program have its own standalone hospice house?
Costs and Insurance
- Does the hospice provider offer an itemized list of services and average costs?
- Does the provider accept the patient’s insurance?
- Is the hospice provider certified by the Centers for Medicare and Medicaid Services (CMS)? (A provider must meet certain federal requirements set by CMS to receive payments from Medicare and/or Medicaid.)
- Does the provider assess any extra medical or health care charges?
- What out-of-pocket expenses might be associated with hospice care?
- Are there any grants, endowments, gifts, etc. that might help pay for hospice services?
- What is the cost of and policy regarding respite care for family caregivers?
Initiating Care
- How soon can hospice services begin?
- What paperwork or forms are needed to initiate hospice care?
- Is an advanced directive required to enroll in hospice?
- If the patient would like to terminate hospice care, what steps are required to do so?
Language, Culture and Religion
- If the patient and/or family speak a foreign language, does the hospice program have staff members who are fluent in the preferred language?
- Are interpreter services available to overcome language barriers or for a patient who is hearing impaired?
- Are staff members knowledgeable about the patient’s culture? Do they understand that it may affect the type of care required and how it is provided?
- Are chaplains available to visit with patients? How regularly?
- Do the chaplains on staff provide nondenominational spiritual guidance or are those affiliated with specific religious traditions available?
Advocating for a Loved One at the End of Life
Family caregivers must function as advocates, even when their loved ones are facing the end of life and require a very different kind of care than they are used to providing and managing. If you live in an area where there are several hospice programs to choose from and you believe that you or a family member may need hospice care someday, investigate early. Ask for references and talk with people who have used these providers.
Don’t hesitate to ask questions before beginning hospice services and throughout a loved one’s time on hospice. Administrators and staff should be able to provide clear answers without delay. If you aren’t satisfied with the provider you choose, and you have other choices, investigate alternative options. Switching hospice providers is not unusual. If you don’t have another hospice to consider, work closely with the current provider to make improvements or seek help from your loved one’s doctor. Do what you must to ensure your loved one is able to die on their terms, without pain and with as much dignity as possible.