Frequently Asked Questions (FAQ) -- ABOUT HOSPICE CARE When is hospice referral appropriate? What are the first steps that happen when a patient is referred to hospice? Who are the members of the hospice team? =============================================== Hospice care focuses on improving the quality of life for persons and their families faced with a life-limiting illness. The primary goals of hospice care are to provide comfort, relieve physical, emotional, and spiritual suffering, and promote the dignity of terminally ill persons. Hospice care neither prolongs nor hastens the dying process. As such, it is palliative not curative. Is it a place? Hospice care is a philosophy or approach to care rather than a place. Care may be provided in a person’s home, nursing home, hospital, or independent facility devoted to end-of-life care. What kind of treatment is provided through hospice care? Hospice care is holistic: Hospice treats the whole person, not just the disease. It focuses on the needs of both the patient and the family. The health care team attends to practical needs such as insurance coverage, transportation, and assistance with bathing in addition to emotional and spiritual needs such as caregiver stress, grief, and fear of dying. Care is provided by an interdisciplinary team including the physician, psychologist, nurse, social worker, chaplain, pharmacist, nursing assistant, volunteers, nutritionist, and physical, occupational and speech therapists. Is there a distinction between hospice and palliative care? Hospice care is a specialized form of palliative care customarily provided during the last several months of a person’s life. Persons with a life-limiting disease may receive palliative care early on in the course of their illness to relieve pain and other physical symptoms and to assist them in coping with how the illness impacts their daily living and family. The goals of both palliative care and hospice care are the relief of suffering and improving quality of life. Is hospice the same as home health nursing? Two primary differences exist between hospice care and home health nursing. First, any patient with a skilled medical care need is qualified to receive home health nursing care. The patient may be recuperating from heart surgery or require intravenous medication for an infection from which they are expected to recover. Hospice care, on the other hand, is limited to persons with a terminal illness, usually with a life expectancy of less than a year, and with a focus on palliation not cure. Second, whereas persons in home health care receive visits primarily from a nurse (additional services such as physical or occupational therapy are sometimes ordered), persons in hospice care receive the services of an entire interdisciplinary team whose area of expertise is end-of-life care. When is hospice referral appropriate? A referral to hospice is appropriate when the patient and family have opted for palliative treatment for life-limiting or “terminal” illness. Medicare guidelines further require that the physician has determined that life expectancy (if the disease follows its normal course), is six months or less Does referral to hospice mean that the physician is “giving up” on a patient? Many physicians struggle with feelings of having failed a patient when no curative treatment remains. Reframing the goals of care from cure to palliation often helps physicians accept a life-limiting prognosis. Remember, there is much you can do even when curative medical treatment is no longer appropriate. By referring a patient to hospice care you are helping to relieve their physical, emotional, and spiritual suffering. Primary physicians often remain actively involved in the care of patients after admission to hospice. For many patients, the involvement of the primary physician in hospice care provides reassurance that their doctors are NOT “giving up” on them. How can a physician talk to a patient about hospice referral and not destroy their optimism or hope? If you believe “there is much we can do” even if you are no longer offering curative medical options, patients and families will feel some sense of hope. Physicians can help a patient to identify their own “goals” for hospice care. This will shift the focus of their hope: To not be in pain, to die peacefully, to know their family will be ok, to be a role model and teacher for their children, to make peace with God or a Higher Power etc. Patients and families may experience some feelings of hopelessness when hospice care is offered as the appropriate course of treatment. This is to be expected and part of the normal process of grieving and acceptance. They may also express anger. This, too, is normal. It is important to understand the culture of your patient and family. Do they prefer to talk about “bad news” directly and openly or do they use euphemisms? Who is the decision maker in the family? Should this news be communicated to the patient or only the family or both? It is also important to know something about the religious framework of the patient and family. What have they told you about the role of their faith in their illness and healing? Do they look to their religious leaders or practices for direction in making medical decisions? Do they look to their spirituality for strength and hope? Can a patient receive medical treatment after referral to hospice? Hospice care is medical treatment. Patients will receive medications to relieve pain and other physical symptoms. The primary physician in consultation with the medical director of the hospice program will determine which forms of medical treatment advance the palliative goals of care identified by the patient and family. For example, radiation therapy may be indicated as the appropriate means for the palliation of pain, or antibiotics may be prescribed to help keep a patient comfortable rather than to prolong life. If a physician refers their patient to hospice, can the physician still remain involved in the patient’s care? The attending physician may continue in a primary role (writing orders for medications, consulting with the patient, family, and interdisciplinary team on treatment decisions and goals, visiting the patient directly at the hospital or home). The patient may also request that the hospice medical director manage symptoms related to the terminal diagnosis or assume complete responsibility for the medical care of the patient. What medical information do patients and families need to have about hospice when the referral is made? It is important for the physician to be as clear as possible with the patient and family about the disease progression, treatment options, prognosis, and goals of medical care that have led to a hospice referral at this time. If a patient’s condition improves unexpectedly, can he or she be discharged from hospice? The primary physician and hospice team evaluate the patient’s appropriateness for hospice care on a regular basis. If a patient no longer meets criteria for hospice care, they may be discharged and readmitted at a later date. Will a patient’s health plan pay for hospice care? How are finances handled in hospice care? A member of the hospice team will consult with a representative of your patient’s health plan/insurance to determine coverage. Most, but not all health plans cover hospice care. Customarily, only treatments and medications related to the “terminal diagnosis” and that are palliative in nature will be covered: for example, if a person has end-stage ovarian cancer but also suffers from a chronic heart condition, medications for the latter illness may not be covered under the hospice benefit. Some plans offer a “per diem” rate for hospice care; others pay on a “fee for service” basis. There may be a “cap” on how much the insurance will cover. Services that are customarily covered include doctor’s fees, medications, visits by the nurse and other core disciplines, durable medical equipment including oxygen, and bereavement care. Billing is done directly by the hospice program to the insurance company or Medicare. What are the first steps that happen when a patient is referred to hospice? A representative of the hospice will meet with the patient and family to explain the hospice philosophy and services. They will confirm medical eligibility, insurance coverage, and patient and family choice for palliative/hospice care. If hospice is determined to be the appropriate kind of medical care, paperwork will be completed and services begin usually within 24-48 hours of referral. Who are the members of the hospice team? The hospice team functions as an interdisciplinary team with a coordinated plan of care. The patient and family are integral members of the interdisciplinary team. Regular team meetings and frequent communications among clinical staff and with the patient’s primary physician ensure that patient and family needs and goals are met and constantly re-assessed. Members of the hospice team involved directly in interdisciplinary care to the patient and family include the primary physician, hospice physician, nurse, social worker, chaplain, bereavement coordinator, home health aide, and volunteers. Additional team members may include occupational, physical and/or speech therapists, psychologist, art and music therapist, pharmacist, and nutritionist. (click here for Hospice Team link.) Who should the physician interact with when making a referral? Most hospice organizations have a referrals or admissions department or coordinator. You may also contact the hospice medical director to consult about whether or not a patient is appropriate for hospice care. How much patient care will family members be expected to provide? If a patient lives at home and is unable to do self-care, usually a “primary caregiver” is required since hospice team members cannot be in the home for extended periods of time. The hospice program can assist the family in hiring private nursing assistance to meet this need or in “piecing together” care among family members, friends, and community resources. After a patient dies, what services or counseling is offered to family or loved ones? Every hospice program offers bereavement services to family and loved ones for a minimum of 13 months following the death of a patient. This may take the form of a visit, phone contact, short-term counseling, assessment of need and referrals to community resources, support groups, educational forums, written information on the grief process, and/or memorial services. Is it possible for a family member to receive bereavement counseling through a hospice even if the patient did not receive hospice services? Yes. Most hospice programs serve as a resource to the larger community for grief education and counseling. Bereaved persons may contact their local hospice to inquire about the services available. If that program is unable to meet the need directly, they will provide the person with referral information. What on-line resources on hospice referrals are available? www.pahospice.org Pennsylvania Hospice Network www.nhpco.org National Hospice and Palliative Care Organization www.aahpm.org American Academy of Hospice and Palliative Medicine