FAQ

It's normal to have many hospice questionsFrequently Asked Hospice Questions

There are many hospice questions and myths. Below are answers to some the most common questions asked. They will give you get a better understanding of what hospice is and how it can benefit your family.

What is hospice care?

Hospice is a philosophy of care for the terminally ill and their families. It treats the person rather than the disease and focuses on quality of life. It surrounds the patient and family with a team consisting of professionals who not only address physical distress, but emotional and spiritual issues as well. Hospice care is patient-centered because the needs of the patient and family drive the activities of the hospice team. We are on call 24 hours a day, seven days a week to meet the needs of our patients and families.

Hospice, or end-of-life care, emphasizes pain management and symptom control rather than curative treatment. It affirms life and regards dying as a normal process. Hospice neither hastens nor postpones death. It provides personalized services and a caring community so that patients and families can attain the necessary preparation for a death that is satisfactory to them. At the center of hospice 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.

If I know of someone who is terminally ill, how can I access services?

Anyone can call to refer a patient to hospice care. Call Prime Care Hospice at (623) 847-2323 to start the process.

When a person has hospice services, who will be involved in the care?

The hospice team usually consists of the person receiving care, the patient’s family and loved ones, the patient’s personal physician, our medical director, nurses, certified nursing assistants, social workers, counselors and spiritual caregivers, trained volunteers, and other professionals such as speech, physical, and occupational therapists, as needed.

Sometimes people say that choosing hospice is giving up hope. Is this true?

Choosing hospice care is not giving up hope. In fact, choosing hospice means that the patient can look forward to living his or her remaining weeks and months in comfort, with dignity and surrounded by people who care. When the focus turns from cure to care, that’s when it’s time to call hospice.

Where do your services take place?

Our hospice services are provided first and foremost in the home. If for some reason, the patient can’t or chooses not to stay in the home, services are also provided in area nursing homes. and assisted living communities.

Does hospice do anything to make death come sooner?

Hospice does nothing to speed up or slow down the death process. We make the patient comfortable until death comes peacefully and naturally.

Should I wait for the physician to recommend hospice care, or should I bring it up during one of our visits?

You can, but oddly enough, doctors often wait for families to bring it up. This is part of the reason that people often receive hospice care so late in the process. If you think your loved one and family might benefit from the support of weekly home visits from staff who specialize in pain control and the easing of distress, ask your doctor if hospice might be something to consider now, or in the near future. If, when you are truly honest with yourself, you realize that you would not be surprised if your loved one were to die in the next six to twelve months, ask the doctor if he or she would be surprised. If the answer is anything close to “No, I would not be surprised,” then maybe it’s a good time to begin a discussion about hospice. If you would like more information, please feel free to call us at (623) 847-2323. We would be happy to talk with you or to do an informational home visit—no obligation or strings attached.

How is the cost of hospice care covered?

Hospice care through our organization is covered by Medicare, Medicaid and most private insurance policies. If the patient has Medicare and meets hospice eligibility requirements, then the government will pay as much as 100% of the cost. In such a case, there is no deductible and no copayment. Not only are the services of the hospice staff entirely covered, but medical supplies and prescriptions relating to pain and comfort management are also covered. Individuals who do not have Medicare coverage but have coverage from private insurance should talk with their insurance company to find out about eligibility and what deductibles and copayments may apply.

Under Medicare and Medicaid, all costs are covered (including durable medical equipment). Private insurance coverage is per the individual’s contract. Medications related to the hospice diagnosis are paid at 100 percent.

Hospice is covered by most insurance plans, including Medicare and Medicaid, with few out-of-pocket costs to the patient.

The Medicare hospice benefit covers costs related to the terminal illness, including the services of the hospice team, medication, medical equipment and supplies. Medicare reimburses for different levels of hospice care recognizing sometimes patients require special attention.

  • Medications: The Medicare hospice benefit covers medications needed to treat the patient’s terminal illness. Generally hospice providers will order medications for you, and you can get them from the pharmacy or arrange for delivery. Medications for a condition not related to the terminal illness – allergy medication for example – are not covered by the hospice benefit.
  • Medical supplies: The physician and nurse will work with the family to determine which medical supplies and equipment the patient needs. Again generally most hospice providers will order the equipment and have it delivered to the home.

Can I still seek aggressive treatment for my disease if I am receiving palliative care?

Yes. The goal of palliative care is to improve quality of life, whether or not you are receiving aggressive treatment for your disease. The goal of palliative care is to relieve your pain and suffering as well as anxiety, nausea, shortness of breath, depression, constipation and other symptoms accompanying your illness.

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.

Most patients and families who receive hospice care say they wish they had known about it earlier, that they needed the help much sooner than they received it. Research has shown that hospice can increase both the quality of life and how long a patient lives. Families who receive hospice near the very end–just a few days to a week–have been shown to have a harder time adjusting during the bereavement period than do those whose loved one receives hospice care for weeks and months before passing on. If you even think that your family and the person you care for could benefit from pain or symptom management, assistance with bathing and grooming, emotional and spiritual support, and telephone access to caregiving advice, ask your physician if hospice might be a service to consider. Experts agree that at least two to three months of care is optimal. It is better to ask sooner rather than later so you do not regret having missed the support that hospice has to offer.

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.  We have nurses available to respond to a call for help within minutes, if necessary and we 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. Our 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 do the hospice volunteers 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 to 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 is 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 from one of these organizations.

Is hospice only for people who are dying?

Hospice care is appropriate if your doctor and the hospice medical director certify that you have a life-limiting illness, and if the disease runs its normal course, death may be expected in six months or less. At times, a disease does not run its normal course and patients may be on hospice services for periods longer than six months. Hospice care provides comfort and support for patients with all types of illnesses including cancer, heart, lung, vascular, kidney and neuromuscular diseases, all types of dementia, and AIDS. If you feel that you or a loved one may benefit from hospice care, we are only a phone call away. A member of our experienced staff can work with you and your physician to determine if hospice care is right for you. If you prefer to be contacted via e-mail, please Contact Us and we will promptly reply to your request.

Who is best suited for hospice care?

Hospice patients are those with very serious medical conditions. Usually they have diseases that are life threatening and make day-to-day living very uncomfortable—physically, emotionally, or spiritually. Some are in pain. Others experience difficult symptoms such as nausea, extreme fatigue, and shortness of breath. These symptoms may be caused by the disease, or they may have been caused by treatments intended to cure the disease. Often patients turn to hospice because they are anxious or depressed, or they are feeling spiritually distressed because of their medical condition. Hospice specializes in easing pain, discomfort, and distress on all levels. The care provided by hospice is often helpful for conditions such as cancer, heart disease, COPD (emphysema) and advanced dementia. Seriously ill patients who have decided that their priority is to have the best quality of life possible are the people who are best suited for hospice.

Isn't using hospice the same as 'giving up'?

Not at all! Although your loved one’s condition may have reached a point that a cure is not likely—or not likely enough to be worth the side effects of treatment—that does not mean there is nothing left to do. In fact, an emphasis on quality of life and easing pain and distress often allows the patient to spend his or her last months focusing on the things that are ultimately the most important and meaningful. As one man put it, “I’d rather spend my time with my children and grandchildren than waste my limited time and energy driving to the treatment center and recovering beside the toilet bowl.” With the expert guidance of a nurse and case manager, as well as the assistance of bath aides, social workers, and chaplains, patients and families find they can focus on their relationships, healing old wounds and building wonderful memories together. Far from giving up, hospice helps families truly live well and support each other during a stressful, but, in the end, very natural family life passage.

Once you begin hospice care, can you leave the program?

A person may sign out of the hospice program for a variety of reasons, such as resuming aggressive curative treatment or pursuing experimental measures. Or, if a patient shows signs of recovery and no longer meets the 6 month guideline, he or she can be discharged from hospice care and return to the program when the illness has progressed at a later time.

Does hospice “dope people up” so they become addicted or sleep all the time?

When patients have a legitimate need for pain medication, they do not become addicted to it. Prime Care Hospice has the expertise to manage pain so that patients are comfortable yet alert and are able to enjoy each day to the fullest extent possible, given their medical condition.

Does hospice do anything to make death come sooner?

Hospice does nothing to speed up or slow down the death process. We make the patient comfortable until death comes peacefully and naturally.

How is hospice different from other medical care?

Hospice looks at all the patient’s and family’s needs. A coordinated team of hospice professionals, assisted by volunteers, works to meet the patient’s and family’s emotional and spiritual needs, as well as the patient’s physical needs.

The emphasis is on controlling pain and symptoms through the most advanced techniques available and on emotional and spiritual support tailored to the needs of the patient and family.

Hospice recognizes that a serious illness affects the entire family as well as the person who is ill. The family, not just the patient, is the “unit of care” for hospice professionals. Sometimes other family members actually need more attention than the patient.

What are the different levels of hospice care?

Most hospice patients live at home or in a nursing home. Routine home hospice care covers the services, of the interdisciplinary hospice team, medications and equipment. Other categories of care are available when needed.

Routine: Standard level of care given in the home, long term care facility or assisted living facility.  Care includes visits from the hospice nurse, chaplain, social worker and home health aides as well as 24-hour on call nursing support.

Inpatient Care: Sometimes pain or symptoms cannot be controlled at home, and the patient is taken to a hospital or other inpatient care center. When the symptoms are under control, the patient returns home. Insurance usually covers the cost of inpatient room and board.

Respite Care: Many patients have their own caregivers, often family members. When caregivers need a rest from their caregiving responsibilities, patients can stay in a nursing home or hospice residential care center for up to five days. Medicare covers the cost of room and board, as do many other insurance plans.

Continuous Care: Sometimes a patient has a medical crisis that needs close medical attention. When this happens, we can arrange for inpatient care, or the hospice provider staff can provide round-the-clock care in the home. When the crisis is over, the patient returns to routine home care.