Hospice FAQs

 There are many questions, even myths, about hospice. Here are a few of the most common questions that may help you get a better understanding of hospice and how it can benefit your family:  

Who is eligible for hospice services?
A person diagnosed with a disease from which he/she is not expected to recover, who is no longer receiving treatment to cure their disease, and whose life expectancy is six months or less, is eligible for hospice services. This doesn't mean the patient is going to die in the next six months. It simply means that he or she has a condition that makes dying a realistic possibility.

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Isn't using hospice the same as "giving up"?
Not at all! 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. 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.

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When should a decision about entering a hospice program be made and who should make it?
At any time during a life-limiting illness, it’s appropriate to discuss all of a patient’s care options, including hospice. By law the decision belongs to the patient. Understandably, most people are uncomfortable with the idea of stopping an all-out effort to beat their disease. Hospice staff members are highly sensitive to these concerns and are always available to discuss them with the patient, family, and physician.

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Should I wait for our physician to raise the possibility of hospice, or should I raise it first?
The patient and family should feel free to discuss hospice care at any time with their physician, other healthcare professionals, clergy, or friends. If you would like more information, please feel free to call us at 218-333-5665 or toll-free in Minnesota 1-800-833-8979. We would be happy to talk with you or to do an informational home visit—no obligation or strings attached.

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What if our physician doesn’t know about hospice?
Most physicians know about hospice. If your physician wants more information, it is available from the American Academy of Hospice and Palliative Medicine, medical societies, state hospice organizations, local hospices, or the National Hospice and Palliative Care Organization  Helpline (1-800-658-8898). In addition, physicians and all others can also obtain information on hospice from the American Cancer Society, the American Association of Retired Persons, and the Social Security Administration.

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 Is hospice care covered by insurance?
Hospice coverage is widely available. It is provided by Medicare nationwide, by Medicaid in some 47 states, and by most private health insurance policies. To be sure of coverage, families should check with their employer or health insurance provider. Also, several options are available through Minnesota Health Care Programs. No one is turned away because of lack of financial resources.

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If the patient is not covered by Medicare or any other health insurance, will hospice still provide care?
The first thing hospice will do is assist families in finding out whether the patient is eligible for any coverage they may not be aware of. Barring this, most hospices will provide care for those who cannot pay, using money raised from the community or from memorial or foundation gifts.

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If the patient is eligible for Medicare, will there be any additional expenses to be paid?
Medicare covers all services and supplies related to the life-limiting illness for the hospice patient. In some hospices, the patient may be required to pay a 5% or $5 co-payment on medication and a 5% co-payment for respite care. You should find out about any co-payment when choosing a hospice.

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How will I know which medications will be paid for by hospice and which medications will be my responsibility?
The hospice benefit pays for medication that provides comfort to the patient to relieve pain, treat nausea, calm nerves, and promote sleep. Two examples of medications not covered would be vitamins or high blood pressure medication that the patient has taken for years.

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Who makes referrals?
Anyone can make a referral. Doctors or hospital social workers refer a large percentage of patients. Relatives and friends may refer a loved one. Sometimes the patient will call for themselves. If you are interested in making a referral, our referral form
is available online or call us at 218-333-5665 or toll-free in Minnesota 1-800-833-8979.

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What does the hospice admission process involve?
One of the first things hospice will do is contact the patient’s physician to make sure he or she agrees that hospice care is appropriate for this patient at this time. (Hospices may have medical staff available to help patients who have no physician). The patient will also be asked to sign consent and insurance forms. These are similar to the forms patients sign when they enter a hospital.

The hospice election form says that the patient understands that the care is palliative (that it is aimed at pain relief and symptom control) rather than curative (to cure, heal, or treat illness). It also outlines the services available. The form Medicare patients sign also tells how electing the Medicare hospice benefit affects other Medicare coverage for a life-limiting illness.

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Is there any special equipment or changes I have to make in my home before hospice care begins?
Your hospice provider will assess your needs, recommend any necessary equipment, and help make arrangements to obtain it. Often the need for equipment is minimal at first and increases as the disease progresses.

In general, hospice will assist in any way it can to make care at home as convenient and safe as possible.

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What specific assistance does hospice provide home-based patients?
Hospice patients are cared for by a team of doctors, nurses, social workers, counselors, home health aides, spiritual caregivers, therapists, and volunteers—and each provides assistance based on his or her area of expertise. In addition, hospices help provide medication, supplies, equipment, hospital services, and additional helpers in the home, as appropriate.

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How is hospice care different from regular medical care?
Hospice care is a patient centered approach that recognizes impending death. It is different because the focus changes from curative care, treating to cure, to palliative care, relieving pain and controlling symptoms.

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Is the home the only place hospice care can be delivered?
No. Although, most hospice services are delivered in a personal residence, some patients are cared for in nursing homes or hospice centers.

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Can I still visit my doctor? What does the medical director do?
Yes, your primary physician remains in charge and participates in the patient care plan. The medical director assists in developing the plan based on the needs and desires of the patient. The medical director oversees medical care of the program and consults with the supervising doctor and the hospice staff.

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Does hospice provide care around the clock?
No, a hospice nurse is on call 24 hours a day, seven days a week to answer questions, help with concerns, and come to the home if a crisis occurs.

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How often does the nurse come to see me?
The nurse comes as often as the patient needs to be seen. If pain is out of control, or other distressing problems occur, the nurse may visit daily. Due to the disease process, the frequency of visits changes as the patient’s needs change.

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Must someone be with the patient at all times?
In the early weeks of care, it’s usually not necessary for someone to be with the patient all the time. Later, however, since one of the most common fears of patients is the fear of dying alone, hospice generally encourages someone be there continuously.

While family and friends must be relied on to give most of the hospice care, hospices do provide volunteers to assist with errands and to provide a break and time away for major caregivers.

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Why should I use the services of the volunteer, social worker, chaplain, and grief coordinator?
The patient and family should receive support services from the entire hospice team of trained professionals. They will be able to address the emotional, psychological, and spiritual needs of the patient and family. The volunteers are invaluable in providing much needed respite so the caregiver can take a break, a nap, attend church, or go out to dinner with friends.

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How many family members or friends does it take to care for a patient at home?
There’s no set number. One of the first things a hospice team will do is prepare an individualized care plan that will, among other things, address the amount of caregiving a patient needs. Hospice staff visit regularly and are always accessible to answer questions and provide support.

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Can the staff of a nursing home be considered my caregiver?
Yes, patients that live at home, a relative’s home, or in a nursing home are cared for in the same way. The caregivers or the nursing home staff will be instructed on comfort measures. Hospice care will be in addition to the care offered by the nursing home.

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How does hospice manage pain?
Hospice nurses and doctors are up-to-date on the latest medications and devices for pain and symptom relief. In addition, physical and occupational therapists assist patients to be as mobile and self-sufficient as possible, and they are often joined by specialists schooled in music therapy, art therapy, diet counseling, and other therapies. 

It is the hospice philosophy that emotional and spiritual pain are just as real and in need of attention as physical pain, so it addresses these, as well. Counselors, including spiritual caregivers, are available to assist family members as well as patients.

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What is hospice’s success rate in battling pain?
Very high. Using some combination of medications, counseling, and therapies, most patients can attain a level of comfort that is acceptable to them.

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Will medications prevent the patient from being able to talk or know what’s happening?
Usually not. It is the goal of hospice to help patients be as comfortable and alert as they desire. By constantly consulting with the patient, hospices have been very successful in reaching this goal.

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Is hospice affiliated with any religious organization?
Hospice care is not an off-shoot of any religion. While some religious organizations have started hospices (sometimes in connection with their hospitals), these hospices serve a broad community and do not require patients to adhere to any particular set of beliefs.

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How difficult is caring for a dying loved one at home?
It’s never easy and sometimes can be quite hard. At the end of a long progressive illness, nights especially can be very long, lonely, and scary. So, hospices have staff available around the clock to consult with the family and to make night visits as appropriate.

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Does hospice do anything to make death come sooner?
Hospices do nothing either to speed up or to slow down the dying process. Just as doctors and midwives lend support and expertise during the time of child birth, so hospice provides its presence and specialized knowledge during the dying process.

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What if I change my mind and want to return to curative treatment?
The patient may leave the hospice program at any time. Should the patient wish to return to hospice care, the hospice benefit can be reinstated.

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Can a hospice patient who shows signs of recovery be returned to regular medical treatment?
Certainly. If improvement in the condition occurs and the disease seems to be in remission, the patient can be discharged from hospice and return to aggressive therapy or go on about his or her daily life.

If a discharged patient should later need to return to hospice care, Medicare and most private insurance will allow additional coverage for this purpose.

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Does hospice provide any help to the family after the patient dies?
Hospice provides continuing contact and support for family and friends for at least a year following the death of a loved one. Most hospices also provide supportive services for anyone in the community who has experienced the death of a family member, a friend, or a loved one. 

Following the death of a loved one, our bereavement program consists of supportive correspondence and educational materials sent out at intervals during the first twelve months. In addition, we offer a remembrance service once a year. The purpose is to find meaning in life, kinship, friendship, and understanding. Sharing and listening help individuals work through the grieving process. The remembrance service is free and open to anyone who has suffered a loss.  

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