Hospice Care by NHPCO

Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is provided to the patient’s loved ones as well. At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so.

How does hospice care work? Hospice focuses on caring, not curing and in most cases care is provided in the patient’s home. Hospice care also is provided in freestanding hospice centers, hospitals, and nursing homes and other long-term care facilities. Hospice services are available to patients of any age, religion, race, or illness. Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations.

How does hospice care work? Typically, a family member serves as the primary caregiver and, when appropriate, helps make decisions for the terminally ill individual. Members of the hospice staff make regular visits to assess the patient and provide additional care or other services. Hospice staff is on-call 24 hours a day, seven days a week.

The hospice team develops a care plan that meets each patient’s individual needs for pain management and symptom control. the team usually consists of:

• The patient’s personal physician;
• Hospice Physician (or medical director);
• Nurses;
• Home Health Aides;
• Social Workers;
• Clergy or other counselors;
• Trained Volunteers;

What services are provided? Among its major responsibilities, the interdisciplinary hospice team:

• Manages the patient’s pain and symptoms;
• Assists the patient with the emotional and psychosocial and spiritual aspects of dying;
• Provides needed drugs, medical supplies, and equipment;
• Coaches the family on how to care for the patient;
• Makes short-term inpatient care available when pain or symptoms become too difficult to manage at home, or the caregiver needs respite time; and
• Provides bereavement care and counseling to surviving family and friends.

Hospice FAQs

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 from hospice services. 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 is needed. By having these discussions in advance, patients are not forced into uncomfortable situations. Instead, patients can make an educated decision that includes the advice and input of family members and loved ones.

How does hospice care begin?

Typically, hospice care starts as soon as a formal request or a ‘referral’ is made by the patient’s doctor. Often a hospice program representative will make an effort to visit the patient within 48 hours of that referral, providing the visit meets the needs and schedule of the patient and family/primary caregiver. Usually, hospice care is ready to begin within a day or two of the referral. However, in urgent situations, hospice services may begin sooner.

Will I be the only hospice patient that the hospice staff serves?

Every hospice patient has access to a hospice volunteer, registered nurse, social worker, home health aide, and chaplain (also known as the interdisciplinary team). For each patient and family, the interdisciplinary team writes a care plan with the patient/family that is used to make sure the patient and family receive the care they need from the team. Typically, full-time registered nurses provide care to about a dozen different families. Social workers usually work with about twice the number of patients/families as nurses. If needed, home health aides, who provide personal care to the patient, will visit most frequently.

All visits, however, are based on the patient and family needs as described in the care plan and the condition of the patient during the course of illness. The frequency of volunteers and spiritual care is often dependent upon the family request and the availability of these services. Travel requirements and other factors may cause some variation in how many patients each hospice staff serves.

Is hospice available after hours?

Hospice care 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.

How does the hospice work to keep the patient comfortable?

Many patients may have pain and other serious symptoms as illness progresses. Hospice staff receives special training to care for all types of physical and emotional symptoms that cause pain, discomfort and distress. Because keeping the patient comfortable and pain-free is an important part of hospice care, many hospice programs have developed ways to measure how comfortable the patient is during  the course of their stay in hospice. Hospice staff works 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. The care plan is reviewed frequently to make sure any changes and new goals are in the plan.

What role does the hospice volunteer serve?

Hospice volunteers 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, and lending emotional support and companionship to patients and family members.

Because hospice volunteers spend time in patients’ and families’ homes, each hospice program generally has some type of application and interview process to assure the person is right for this type of volunteer work. In addition, hospice programs have an organized training program for their patient care volunteers. Areas covered by these training programs often include understanding hospice, confidentiality, working with families, listening skills, signs and symptoms of approaching death, loss and grief and bereavement support.

Can I be cared for by hospice if I reside in a nursing facility or other type of long-term care facility?

Hospice services can be provided to a terminally ill person wherever they live. This means a patient living in a nursing facility or long-term care facility can receive specialized visits from hospice nurses, home health aides, chaplains, social workers, and volunteers, in addition to other care and services provided by the nursing facility. The hospice and the nursing home will have a written agreement in place in order for the hospice to serve residents of the facility.

What happens if I cannot stay at home due to my increasing care need and require a different place to stay during my final phase of life?

A growing number of hospice programs have their own hospice facilities or have arrangements with freestanding hospice houses, hospitals or inpatient residential centers that care for patients who cannot stay where they usually live. These patients may require a different place to live during this phase of their life when they need extra care. However, care in these settings in not covered under the Medicare or Medicaid Hospice Benefit. It is best to find out, well before hospice may be needed if insurance or any other payer covers this type of care or if patients/families will be responsible for payment.

Do state and federal reviewers inspect and evaluate hospices?

Yes. There are state licensure requirements that must be met by hospice programs in order for them to deliver care. In addition, hospices must comply with federal regulations in order to be approved for reimbursement under Medicare. Hospices must periodically undergo inspection to be sure they are meeting regulatory standards in order to maintain their license to operate and the certification that permits Medicare reimbursement.

How can I be sure that quality hospice care is provided.

Many hospices use tools to let them see how well they are doing in relation to quality hospice standards. In addition, most programs use family satisfaction surveys to get feedback on the performance of their programs. To help hospice programs in making sure they give quality care and service, the National Hospice and Palliative Care Organization has developed recommended standards entitled ‘Standards of Practice for Hospice Programs’ as one way of ensuring quality.

There are also voluntary accreditation organizations that evaluate hospice programs to protect consumers. These organizations survey hospices to see whether they are providing care that meets defined quality 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 that hospice program. A hospice program may volunteer to obtain accreditation form one for these organizations.

Key Hospice Messages – NHPCO – National Hospice & Palliative Care Organization

Hospice: It’s About How You LIVE

Overarching Message: All Americans deserve quality care at the end of life — it’s a fundamental part of living. 

Key Message One: Hospice Care is the model of high-quality, compassionate care that helps patients and families live as fully as possible. 

• Hospice cares for more than 1.65 million Americans, and their families, every year — a number that continues to grow.
• The focus is on caring, not curing. Hospice utilizes an interdisciplinary team of healthcare professionals and trained volunteers that address symptom control, pain management,, and emotional and spiritual support expressly tailored to the patient’s needs and wishes.
• Hospice is not “giving up,” nor is it a form of euthanasia or physician assisted suicide.

Key Message Two: Hospice Provides the Care Americans Have Said They Want.

• A Gallup poll reveals that close to nine in ten adults (88%) would prefer to die in their homes, free of pain, surrounded by family and loved ones: Hospice works to make this happen.
• National Hospice and Palliative Care Organization research shows that 94% of families who had a loved one cared for by hospice rated the care as very good to excellent.
• U.S. Department of Health and Human Services has indicated that expanding the reach of hospice care hold enormous potential benefits for those nearing the end of life, whether they are in nursing homes, their own homes, or in hospitals.

Key Message Three: Hospice Care is Not Limited to Six-months of Service.

• The Medicare Hospice Benefit requires that a terminally-ill patient have a prognosis of six months or less: There is not a six-month limit to hospice care services.
• Hospice eligibility requirements should not be confused with length of service.
• A patient in the final phase of life may receive hospice care for as long as necessary when a physician certifies that he or she continues to meet eligibility requirements.
• Under the Medicare Hospice Benefit, two 90-day periods of care (a total of six months) are followed by an unlimited number of 60-day periods.