Hospice Frequently Asked Questions

What do hospice services look like in Colorado?
Hospice services are delivered by a team of healthcare professionals, including a physician, a nurse, clergy/counselor, a social worker, volunteer, and nurse's aide. As appropriate, a pharmacist, dietician, physical therapist, occupational therapist, and speech/language therapist also may supplement the team.Most hospice patients, both nationally and in Colorado, receive care in their own home or in the home of a family member. Some receive care in nursing homes, assisted-living residences, or hospital settings. Nine hospice residences, facilities specially designed for hospice patients, are available in Colorado (four in the Denver metropolitan area and one each in Boulder, Colorado Springs, Greeley, Fort Collins, and Pueblo).

When care is delivered to the patient's home, including nursing home or assisted-living setting, typically the nurse visits most frequently, up to several times a week depending on need. Visits from the physician are rare, but he or she closely monitors the patient's progress through regular contact and team meetings. All the other members of the team visit as often or not as the hospice patient and family desire.

Hospice focuses on pain management and symptom control, understanding that psychological and spiritual pain are as significant as physical pain and will receive the same active attention as other forms of distress. Death is accepted as a natural part of life, and the dying process is neither hastened nor prolonged.

The family is considered just as much "under the care" of the hospice team and their needs are looked after as well. Bereavement support is extended to the family (broadly defined) for up to a year after the patient has died.

Hospice care is offered to persons receiving Medicare as a Part A Benefit. Under this benefit, all the costs of the care -- the services of the team, medications, equipment and supplies -- related to the person's terminal diagnosis are covered by Medicare. Medicaid and many private insurers have similar hospice benefits. Additional, much needed funding comes to hospices from memorial gifts or community fundraising. Hospices are dedicated to providing quality care regardless of race, religion, sex, age, physical or mental disabilities, or ability to pay.

To enroll in hospice under the Medicare benefit, a person must have an illness that, in a physician's professional opinion, is likely to cause their death within six months if the disease is allowed to progress naturally. Typically, treatments directed toward curing the disease (which usually by this time are either ineffective or too burdensome for the slim chance of benefit) are stopped and all the focus is turned to comfort. Hospice care is active and aggressive in achieving the pain relief and personal comfort.

Colorado is home to the second hospice agency to open in the country (now HospiceCare of Boulder and Broomfield Counties) and the first to have a dedicated hospice residence (Hospice of Saint John). All of Colorado's 54 hospices serving the public are licensed by the state and certified by Medicare.

About a third of Colorado's hospices are located in "urban" areas; about a third in rural areas, and about a third in "frontier" areas. Only three counties are not served by any hospice agency. Most are independent nonprofit agencies; a few are branches of national chains, a few government owned, and several associated with hospital or home health programs.

Almost half of all Coloradans who die are served by hospice care (about 15,000 in 2007). Cancer, lung disease, heart disease, and dementia (including Alzheimer's disease) are the most frequently reported disease categories in Colorado.

What is the cost for hospice services, and who pays for it?
Reimbursement for hospice services comes from Medicare, Medicaid, health maintenance organizations, and other private insurance plans. Under Medicare and Medicaid in Colorado, all the services provided by the hospice team, medical equipment such as hospital beds, and pharmaceuticals related to the terminal illness are fully covered (although hospices may collect a very low co-payment for pharmaceuticals). Questions about the nature of the hospice benefit available in a particular insurance plan should be directed to the insurer or to a hospice representative.

Hospice services are available under the regular Medicare benefit. In 1983, Congress expanded the Medicare insurance program to include hospice care. To be eligible for this benefit, a physician must state in writing that, in his or her clinical judgment, the patient has less than six months to live if the disease runs its normal course. The physician must review the medical chart and restate his or her belief that the individual has less than six months to live at certain intervals, known as "benefit periods" (two periods of 90 days each, followed by an unlimited number of 60 day periods). The patient signs an elective statement indicating he or she understands the nature of the illness and of hospice care. In addition to hospice services, the patient may continue to receive Medicare benefits not related to the terminal illness. In Colorado, Medicaid provides a similar benefit to Medicaid-eligible recipients. Patients may elect and revoke the Medicare Hospice Benefit without penalty.

In the Medicare and Medicaid systems, hospices are treated distinctly from other health care providers. During the time that a beneficiary is receiving hospice care, the reimbursement is based on a daily rate paid to the hospice program for each day, without regard to the specific services provided on any given day. Patients and families are spared the all-too-familiar deluge of bills and payment notices, because the claims-filing and reimbursements occur directly between the hospice and the payment source.

Many hospices offer care on a private pay, sliding-fee scale, or charitable basis for those who have insufficient insurance. Charitable care is provided through the generosity of grants, gifts, and donations to not-for-profit hospice organizations. For-profit hospices may have foundations to assist patients in need. Speak to your local hospice about these options.

Why should we choose hospice services?
The decision to choose hospice is a very personal one. It directly involves the patient, family, physician, and any loved ones who may serve as caregivers. Here are a few things you should consider.

A. Hospice's expertise in palliative, or "comfort" care, assures the patient of state-of-the-art pain control and symptom management.
B. Hospice enables patients to focus on living their remaining days fully, at home, among family and friends. This emphasis on family involvement - understanding that everyone's definition of "family" is unique - helps individuals to support each other during this time of life.
C. Hospice care allows terminally ill patients and their families to remain together in the comfort and dignity of their home and to die in familiar surroundings.
D. Hospice care is a cost-effective alternative to the high costs associated with hospitals and traditional institutional care.
E. Hospice treats the person, not the disease; focuses on the family, not only the individual patient; and emphasizes the quality of life, not its duration.
F. Hospice care relies on the combined knowledge and skill of a team of professionals, including physicians, nurses, certified nursing assistants, social workers, counselors, and volunteers.

Does choosing hospice mean I am "giving up"?
Hospice care focuses on enhancing the quality of life in its final stages. It seeks neither to shorten nor prolong life. A patient can choose to leave hospice care at any time and return to aggressive curative treatment for the disease. The choice is always yours. A physician's referral to hospice care usually indicates that no other curative measures are appropriate to be offered.

May I keep my own doctor?
Yes. In fact, your physician will play a crucial role on the hospice team. Your doctor will work closely with hospice to develop a plan of care that best meets your individual needs and those of your family and caregivers. In addition, the hospice nurse will keep your doctor regularly informed about your condition and any changes that may be taking place.

What if my doctor hasn't spoken with me about hospice?
Your doctor may feel that your condition is not yet appropriate for hospice. However, it is wise to request information about hospice before you need it, so that you can understand your options and access appropriate services when you want and need them. Feel free to raise the issue with your physician, who may appreciate that you have given the signal that this is a topic that you are willing to discuss. If you would like additional information, speak with a hospice staff member from a local hospice. To locate hospice programs within Colorado, go to our “Find Care” link.

What does the hospice admission process involve?
Hospice will contact your physician to verify whether he or she agrees that hospice care is appropriate for you at this time. The physician must sign a referral form; however, the patient, family, or a friend can request hospice care. The patient will be asked to sign consent and insurance forms. A liaison from the hospice will make the first visit to the home to discuss the details of the program with you and your family.

May I continue with my treatments and therapies?
Hospice specializes in palliative, or "comfort" care. Therefore, treatments and therapies focus on controlling symptoms and managing pain, rather than attempting to cure. Some treatments, such as chemotherapy, can be either curative or palliative, depending on the circumstance. You should discuss with your physician which palliative treatments will be provided in your plan of care. Patients who wish to continue to aggressively seek a cure should seriously consider whether hospice is right for them at this point in time.

Will I be in pain?
Pain is not an inevitable side-effect of terminal illness. For more than 25 years, hospice doctors and nurses have dedicated themselves to providing the very best pain control and symptom management. With proper medication and management of an individual's changing condition, the vast majority of hospice patients can live alert and pain-free throughout the course of an illness.

What if I get better?
It is possible that your condition may improve to the point that you no longer need hospice, or where it again becomes appropriate to seek curative treatment. In such cases, your hospice team can discharge you from the hospice program and help you to transition to a different level of care. It is also possible that your life expectancy may exceed the six months anticipated when you became eligible for hospice. As long as your doctor and the hospice team certify that your condition is still appropriate for hospice, you may remain on the hospice program.

Will I become a burden on my family?
Many patients worry about this. You should know that hospice provides considerable support to your family, helping them to manage your care in an environment of trust and respect. Almost all families describe their hospice experience as one of the most meaningful in their lives - a time when they strengthened relationships and captured valuable memories.

What if my family is unable to care for me?
Hospice understands that some people do not have the option to stay with a family member who can serve as their primary caregiver. In such cases, you may choose to live in an extended care facility, or you may speak to your local hospice about special arrangements to meet your needs. Hospice will work with you to address your unique situation to ensure your safety and well-being.

Will my personal beliefs be respected?
One of the founding philosophies of hospice involves an abiding respect for each individual's unique values. All hospice team members appreciate diversity in cultural heritage, faith, spirituality, and lifestyle. If requested, hospice chaplains can provide an extra measure of support, offering spiritual comfort with an attitude of openness and acceptance.

How can I let my family know my informed healthcare decisions?
You can help your family to understand your wishes by preparing them in advance. You may wish to discuss your choices with your family, friends, doctor, clergy, or others close to you, so that you can gain a clear sense of the options and decisions which lie ahead, and those important to you will be aware of your wishes.

What questions can I ask to help choose the right hospice program for me or my loved one?
A. Are you certified by Medicare and/or accredited? How long have you been operating as a state-licensed and certified or accredited hospice?
B. Are you a member of the Colorado Center for Hospice & Palliative Care or the NHPCO Quality Partners?
C. What services do you provide?
D. What services are not covered by the Medicare Hospice Benefit? (If you will be covered by private insurance, ask if the hospice social worker can help you determine which services might not be covered by your policy. Likewise, if you do not have insurance, ask about Medicaid eligibility or the hospice’s program for uninsured patients.)
E. How can my or my loved one’s current doctor(s) continue to be involved in my or my loved one’s care?
F. How often will the hospice team members visit?
G. Will a volunteer be available to help?
H. How do you respond to needs after hours and on weekends or holidays?
I. What are our options if I or my loved one can’t stay at home? Or what if my family needs a break?
J. What are your room and board rates? When are these charges not covered by Medicare or my private insurance?
K. If the patient now lives in a nursing home or assisted living residence, can you provide care there?
L. What kind of support is available to the family/caregiver?
M. In what ways do you provide bereavement care and grief counseling?
N. (If applicable) Do you have special services for the members of my cultural/religious group?

Who and what is included in hospice programs and services?
A team of hospice professionals and volunteers works cooperatively with the patient, family, and the primary physician to provide this special form of care. Hospice addresses the physical, emotional, social, and spiritual needs of the patient, while attending to the equally important needs of the family and caregivers. The hospice team includes:

  1. The patient's physician who becomes an integral part of the hospice team and continues to direct the plan of care.
  2. The hospice's medical director who oversees the medical services provided to each patient in the hospice program and ensures the high quality of care.
  3. Registered nurses who specialize in pain management and symptom control, particularly for end-stage diseases.
  4. Certified nursing assistants who provide personal care and help with the activities of daily living.
  5. Social workers who assist the patient and family with emotional concerns, including bereavement, as well as access to supportive community resources.
  6. Pastoral counselors who serve people of all faiths, or of no religious faith, providing comfort and support whenever requested. They also will facilitate contacts with community clergy as needed.
  7. Bereavement counselors who support the family and loved ones of all ages with support groups, one-on-one counseling, and other special services during the bereavement process.
  8. Occupational, physical, and speech therapists and dieticians who can help to improve the patient's quality of life.
  9. Volunteers who have been trained to provide companionship and support the patient and family with the every-day challenges of life.
  10. The plan of care developed by the patient's physician and hospice will determine the frequency of scheduled visits from the various members of the hospice team. This plan will evolve to meet changing needs. In addition, a hospice nurse can be reached by telephone around-the-clock, and emergency visits will be provided whenever necessary.

Who is eligible to receive hospice services under the Medicare Hospice Benefit?
Hospice serves patients with a terminal illness resulting in a life expectancy of six months or less, as determined by the patient's physician. Hospices are responsible for providing quality care regardless of diagnosis, age, gender, nationality, race, creed, sexual orientation, disability, or ability to pay. The patient makes the decision to choose hospice in partnership with his or her family physician and the hospice team, after a thorough review of all the care options.

Do hospice services come to where I live?
Hospice care takes place in the home. For some, "home" may mean a house or an apartment. For others, it may be some form of extended care facility, such as a nursing home or assisted living community. In addition, there are several hospice residences operating in Colorado exclusively for hospice patients. Regardless of your circumstance, the hospice team will come to you where you live.

The majority of hospice patients live in their own home with the help of a family member or friend who serves as the "primary caregiver." This caregiver works closely with the hospice team to provide for the patient's daily needs. In extended care facilities, hospice teams create a partnership with the staff and family, just as they would with the family in the home.

Even if you move to another town or state, your hospice can make arrangements for you to receive hospice care from the provider in your new location.

In addition to home care, hospice provides short-term inpatient care, most frequently in a hospital setting, when necessary to manage the symptoms of the illness or to give the family a brief rest from the responsibilities of care-giving. During these times, the hospice team remains involved and helps the patient transition back to the home environment as quickly as possible.

When is the right time to start hospice services?
When the goal of treatment begins to shift from curing the illness to providing comfort, it is time to consider hospice. This time may come well before a physician indicates that the patient's life expectancy is six months or less. Sadly, many people wait until their final days to involve hospice. By contacting hospice early in the diagnosis, the patient and family reserve time to understand their options and choose the path that will have the most positive impact on quality of life. The best time to learn about hospice is before you need it

How are hospice services unique?
Hospice care centers on the patient and family. The goal of the professional hospice team is to empower the patient and family to make their own choices with the hospice's support and assistance. The team serves as the patient's and family's advocates, helping to access the information and resources the patient and family need during this very challenging time. In addition to providing the care directly, hospice team members serve as teachers, enabling the family to care for their loved one at home. Hospice recognizes that the family and caregivers need an extra measure of support both during and after their experience of caring for a terminally ill loved one.

Are hospice services for any kind of terminal diagnosis?
In its earliest years, hospice was associated primarily with a cancer diagnosis. However, now hospice care has been made available to individuals with any life-limiting diagnosis, including: cardiac and respiratory diseases, neurological diseases, AIDS, liver disease, Parkinson's disease, Alzheimer's disease, dementia, and others. If you are not certain whether your diagnosis is appropriate for hospice, speak with your doctor or a hospice in your community.

Is there a hospice patient bill of rights?
The Hospice Association of America has developed the following Hospice Patients' Bill of Rights, which is widely accepted by hospices in the United States.

Hospice Patient Bill of Rights
Patients have a right to be notified in writing of their rights and obligations before hospice care begins. Consistent with state laws, the patient's family or guardian may exercise the patient's rights when the patient is unable to do so. Hospice organizations have an obligation to protect and promote the rights of their patients, including the following.

Dignity And Respect
Patients and their hospice caregivers have a right to mutual respect and dignity. Caregivers are prohibited from accepting personal gifts and borrowing from patients/families/primary caregivers. In addition, patients have the right:

  • to have relationships with hospice organizations that are based on honesty and ethical standards of conduct;
  • to be informed of the procedures they can follow to lodge complaints with the hospice organization about the care that is (or fails to be) furnished and regarding a lack of respect for property (to lodge complaints call the hospice);
  • to know about the disposition of such complaints; and to voice their grievances without fear of discrimination or reprisal for having done so

Decision-Making
Patients have the right:

  • to be notified in writing of the care that is to be furnished, the types (disciplines) of caregivers who will furnish the care, and the frequency of the services that are proposed to be furnished;
  • to be advised of any change in the plan of care before the change is made;
  • to participate in the planning of the care and in planning changes in the care, and to be advised that they have the right to do so;
  • to refuse services and to be advised of the consequences of refusing care; and
  • to request a change in caregiver without fear of reprisal or discrimination.

The hospice organization or the patient's physician may be forced to refer the patient to another source of care if the client's refusal to comply with the plan of care threatens to compromise the provider's commitment to quality care

Privacy
Patients have the right:

  • to confidentiality with regard to information about their health, social, and financial circumstances and about what takes place in the home; and
  • to expect the hospice organization to release information only as consistent with its internal policy, required by law, or authorized by the client.

Financial
Patients have the right:

  • to be informed of the extent to which payment may be expected from Medicare, Medicaid or any other payor known to the hospice organization
  • to be informed of any charges that will not be covered by Medicare
  • to be informed of the charges for which the patient may be liable
  • to receive this information, orally and in writing, within 15 working days of the date the hospice organization becomes aware of any changes in charges
  • to have access, on request, to all bills for service received, regardless of whether they are paid out of pocket or by another party; and
  • to be informed of the hospice's ownership status and its affiliation with any entities to which the patient is referred

Quality of Care
Patients have the right:

  • to receive care of the highest quality
  • to be admitted by a hospice organization only if it is assured that all necessary palliative and supportive services will be provided to promote the physical, psychological, social, and spiritual well-being of the dying patient. An organization with less than optimal resources may, however, admit the patient if a more appropriate hospice organization is not available-but only after fully informing the client of its limitations and the lack of suitable alternative arrangements; and
  • to be told what to do in the case of an emergency

The Hospice Organization Shall Assure That:

  • all medically related hospice care is provided in accordance with physician's orders and that a plan of care, which is developed by the patient's physician and the hospice interdisciplinary group in conjunction with the patient, specifies the services to be provided and their frequency and duration; and
  • all medically related personal care is provided by an appropriately trained home care aide who is supervised by a nurse or other qualified hospice professional.