Hospice Care: What You Need to Know

What is hospice?

1. Hospice care provides medical, physical and psychological support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatment.
2. Hospice is a concept. Hospice care can be received in a patient’s or family member’s home, at a hospital or at a special facility.
3. Hospice care can also provide support and training to the caregivers, family and friends.

When should a patient begin hospice care?

Patients can begin hospice care when life expectancy is estimated to be approximately six months. The starting date is decided by the patient’s physician. Before considering hospice care, a patient must clearly understand and accept that the life-ending illness will not be aggressively treated.

Ask the patient’s physicians and hospital social workers about the best care options for the patient, family and friends.

What kinds of hospice care are available?

1. Home care
   • Eighty percent of hospice patients are cared for in a home setting, whether it is at their own home or a friend or family member’s home, according to the National Hospice and Palliative Care Organization.
   • Family members and friends take an active role as caregivers for the patient.
   • The hospice team provides service visits to the home and a hospice worker is on call 24 hours a day.
2. Inpatient care
   • If a patient’s condition and symptoms are difficult to manage, he or she may be cared for in an inpatient facility. This is similar to a hospital setting or may be affiliated with a hospital.
3. Respite care
   • Respite care is when family members and friends need temporary relief from the caregiving role. Hospice team members come to a home or facility (for a few hours or days) to provide caregiving and other services.
   • A patient might also be moved to a hospice or nursing home facility in order to provide respite care.
4. Continuous home care
   • Home care with hospice workers providing care around-the-clock.

What does hospice care offer?

Hospice care is team-oriented with an emphasis on emotional and spiritual caretaking as well as alleviating a patient’s symptoms and pain. Hospice care often includes:

1. Nursing services
2. Physician services
3. Medical social services — a social worker can provide advice and counseling to the patient and family members
4. Home health aide and homemaker services
5. Spiritual support; grief, bereavement and other counseling
6. Physical, occupational, and speech/language therapy
7. Trained volunteers
8. Medicine for controlling pain and other symptoms
9. Medical supplies and appliances
10. Continuous care at home during periods of crisis
11. Short-term inpatient care

How much does hospice cost?

1. Generally, hospice costs less than hospital care, nursing homes, or other institutions due to help from insurance companies and government services.
2. Usually, the costs will only be for the services that the family cannot provide, but this may vary depending on the situation. Hospice care may cost more when additional services or long-term and/or specialized care are needed.
3. Because of volunteers, some services, like meals-on-wheels, friendly visits, and telephone reassurance may be free or cost a low fee.
4. When a patient age 65 or older is transferred to hospice, Medicare may help relieve some of the hospice care costs. To find out more about insurance, coverage and eligibility information, visit the Medicare or Medicaid websites.

Here’s a PDF publication about Medicare Hospice Benefits.

How do I choose the right hospice?

Hospice facilities or services are operated by either nonprofit organizations, for-profit companies or the government. To choose the hospice care that best meets a patient’s needs, consider these starter tips.

Starting the Search

1. Start a hospice folder in either a notebook or create digital files on your computer where you can save your scanned notes, any emails or digital reports or any other health information.
   • What are you keeping track of? Receipts, notes, questions, paperwork, photos, pricing, schedules, brochures, etc.
   • Consider a separate section or folder for each service you contact.
   • Keep a diary – write down questions you might have for hospice staff, document staff and community visits, medications administered, pain levels, etc.
   • Keep a running list of names of those who send gifts, flowers or visits. This will help when sending out thank you cards later on.
2. Consult with your doctor and other caregivers for recommendations about types of hospice services that would be most appropriate for your family.
   • Are you working with a social worker? Ask if that person may help you with your search.
   • Ask friends, family, co-workers and others about the reputation of the hospices available in the community.
   • If the hospice patient is a veteran, check out the Veteran’s Administration.
3. Make a list of your most important considerations:
   • Would you prefer home care or inpatient care?
   • What specialized symptom-management care might be needed for a patient’s condition?
   • Are cultural concerns or religious affiliations considered?
   • Is hospice in your insurance network?
   • Make a list of other preferences important to the patient and the patient’s family.
4. Call each hospice service
   • Make appointments to meet with the director of the services you’ve chosen.

Management

1. Who owns the hospice service?
2. Does the owner run the hospice? If not, who does?
   • Jot down the name and title of the person who manages the hospice service.
   • What are the two best ways to get in touch with the owners and managers? (Keep a record of their phone numbers).
3. How long has the manager been running the hospice service or others like it?
4. Is the hospice service nonprofit, for-profit or government-operated?
5. Ask for a copy of the most recent financial report.
   • The financial report can help you see how your money will be spent. Look at areas like staff wages, food costs, home and room improvements, activity budgets, etc.
6. What are the procedures if a resident would like to transfer to another hospice service?
   • Who on site helps with that?
   • How long do transfers generally take?
7. Who is the best contact for additional, day-to-day questions?

State and Medicare Certification

Like workplace safety or health regulations for restaurants, hospice services have to be evaluated by your state’s certification board. To find certification information about a service, contact your state regulatory agency (usually this is the Department of Public Health.)

In order to for its patients to receive Medicare Hospice Benefits, the hospice must also be Medicare-certified. This means the hospices have to meet certain federal standards set by Medicare. To find certification information about a service, contact Medicare.

Here are some starter questions for the hospice service.

1. Is the hospice service supposed to be licensed or certified by a state or local agency? If so, is the license or certification up-to-date?
2. What were the results of your last state certification review?
   • What problems were uncovered?
   • Have the problems been resolved? Or is there a plan in place to resolve them?
   • Remember, you can double check the certification information at your state’s Department of Public Health.
3. When is the next certification?
4. Is the hospice Medicare-certified? (In order to be Medicare certified, the hospice must meet certain federal requirements set by the Centers for Medicare & Medicaid Systems.)

WHN TIP – Medicare: If the hospice is Medicare-certified, Medicare regulates that the hospice must have a social worker on staff (either on a part-time or full-time basis).

Staff

1. How many staff members are assigned to each patient?
   • Per day?
   • Per shift?
2. How does that compare with other facilities in the area?
3. What are the steps for screening and training new staff?
4. What qualifications do you require of:
   • Staff members?
   • RNs?
   • Aides?
   • Volunteers?
5. What additional training do you give or require of:
   • Staff members?
   • RNs
   • Aides?
   • Volunteers?
6. Is there a full-time social worker?
   • Get their name, experience and how long they have been associated with the facility
7. Is there full-time therapy staff?
   • Get their name(s), experience and how long they have been associated with the facility.
8. Is there a volunteer program?
   • How long have they had the program?
   • What is the name and contact information of the person in charge?
   • What is the experience of the person in charge?
   • How long have they been associated with the facility?
   • How many volunteers are there and from where?
   • How many volunteers are trained?

Services and Policies

1. What services are offered?
2. What services are included in the basic daily rate?
3. What services are not covered in the basic daily rate?
4. How many people (patients) do you care for?
5. How do you include patients in decisions regarding their care?
6. How do you include family members/caregivers in decisions regarding patient care? How are they notified?
7. How often are care conferences held with the hospice team and patient, family and friends?
8. Can family members/caregivers help the patient with personal care?
9. What services will family members/caregivers be responsible for?
10. What resources are available if a family member chooses to care for the patient at home?
11. If the family or patient decides that home care isn’t the best option, can the hospice plan be re-evaluated? Can additional help be provided?
12. Are there support services for children and adults?
13. Will there be a written statement or contract outlining the terms of care? Is this negotiable? How often is this plan of care reviewed and revised?
14. What policies/processes do you have for resolving “issues”?
15. Can symptom management care be provided?
16. What other services might the hospice assist with if needed (dressing, bathing, meals, grooming, going to the bathroom, transportation, etc.)?
17. Are therapy services provided by facility staff or outside contractors?
    • Get names, their experience and how long they’ve been associated with the facility.
    • If it is an outside contractor, get the name of the company, the contractors who come on-site, their experience and length of time they’ve been associated with the facility.
18. If the hospice patient requires high-technology therapies or devices to manage pain and other symptoms, will this be an issue?
19. What are the available support services for family members/caregivers? Are there services for the family after the patient has passed on? How long are these programs?

WHN TIP – The Physician: Be sure to find out if the patient’s current physician makes rounds to where the patient will be staying (home, facility, etc.). If not, the patient may need to consider changing physicians.

Hospice Visits

1. Does the organization provide home visits?
2. Are there geographical boundaries or other limits to the home care services?
3. Can hospice care be brought to a nursing home or hospital?
4. How often will aides, volunteers, physicians, and other hospice team workers visit during the day? During the week?
5. What kind of services are available over the weekend?
6. Do other health care providers visit the home regularly? (Examples may include a dentist, podiatrist for feet, physical therapist, occupational therapist, and physiotherapist.)
7. Can the patient request additional visits when needed?
8. How long does a visit with a healthcare provider typically last?
9. How many overnight staff members are awake or on call?
10. Awake: ____________
11. On call: ____________
12. How quickly will they be able to come to the home/location? During the day? At night?
13. What hospital or facility is used if inpatient hospice care is needed?
14. Is that in a network with the insurance company or Medicare/Medicaid

Costs and Insurance Questions

1. Ask for a price breakdown list of probable or “average” costs.
2. Does the hospice have a contract with the patient’s insurance company?
3. Is it Medicare certified?
4. Does the hospice take Medicaid payments?
5. Are there extra medical or health care charges?
6. What out-of-pocket expenses might there be?
7. Are there any grants, endowments, etc. that might help pay for hospice services?

Initiating Hospice Care

1. How soon can hospice services begin?
2. What paperwork or forms are needed in order to initiate hospice care?
3. Is an advanced directive required?
4. If the patient would like to terminate hospice care, what is needed to end care?

Language, Culture, Religion

1. Does anyone on staff speak the patient’s preferred language?
2. Are interpreter services available for language or for a patient who is hearing impaired?
3. Do staff members know about the patient’s culture? Do they understand that it may affect the type of care and how it is provided?
4. Are members of faith organizations available to visit? How regularly?
   • What services do they offer?
   • Are they on-call as well as medical staff?

What documents are needed?

1. A referral from a physician is needed in order to begin hospice care. This referral must state that the patient’s life expectancy is estimated to be approximately six months or less.
   • If six months have passed, another referral will be needed to receive Medicare Hospice Benefits and/or to receive hospice care services. Understand that the physician may or may not grant another referral requesting to continue hospice care.
2. You may need a “living will” and an “advance directive” (medical power of attorney) before treatment begins or shortly after. Talk to your hospice administration to see if this is necessary.
   • A living will outlines the patient’s wishes for medical treatment and gives the patient the legal right to refuse treatment.
   • An advance directive, also known as “medical power of attorney,” identifies a family member or loved one chosen by the patient who will make decisions about the patient’s medical care if the patient is unable to do so.

Initiating Hospice Care

1. Before care begins, a hospice worker will meet with the patient’s
   physician, hospital staff and a hospice physician to discuss care and make an assessment of the patient’s current condition.
2. Following that meeting, the hospice worker will meet with the patient’s personal physician, the patient and family to discuss the assessment. A plan of care will be provided, which will be regularly reviewed and revised according to the patient’s condition.

1. During hospice care, take the time to get to know the staff.
2. Discuss concerns and questions with hospice staff.
3. Write down any health or care problems (date, time, staff) to discuss with hospice management.
4. Share details about the resident’s likes, dislikes, and daily
   routines.

Under what circumstances would a patient be discharged from hospice?

1. A patient (or health care surrogate) requests discharge for any reason.
2. A remission or long-term stability of the hospice illness is achieved.
3. The patient moves out of the service area.
4. The patient seeks treatment outside the hospice plan of care.
5. A plan for safety for the patient or the hospice staff cannot be instituted.

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Remember …

The information provided here is not meant to be a substitute for professional medical advice. These tips are from doctors, nurses and people who have shared real-life advice; always check with a doctor or appropriate professional you trust before making any healthcare-related decisions.

Thank You …

A special thank you to the industry professionals, doctors, nurses, patients, caregivers and families who gave us their time, insight and real-life advice.

Photo Credit: Glenn Carstens-Peters