Frequently Asked Questions about Options for Care

Frequently asked questions about options for care.

Is hospice a place?

Hospice is not a place. It’s a philosophy and a set of care practices focused on comforting people with a life-limiting illness, supporting families and helping people live as fully as possible in the time they have left. Hospice care is available in assisted living and skilled nursing facilities, but almost half of people in hospice are cared for in their own homes.

Is there only one hospice program in Kansas City?

There are over 30 hospice providers in the Kansas City area. Medicare and insurance companies allow you to choose any hospice that offers services in your area. It is advisable to interview several hospices and choose the one that works best for your unique situation.

Does needing hospice mean there’s nothing more that doctors can do for you?

Hospice physicians are experts in pain management, symptom control and other ways of providing relief. A hospice team may also include nurses, home health aides, social workers, chaplains, art/music therapy, other medical professionals and volunteers.

Is hospice only for cancer patients?

Less than half of people in hospice care have cancer. Hospice is also available for Alzheimer’s disease, congestive heart failure, end-stage chronic diseases and other illnesses.

Is hospice just for the very last days of life?

Hospice is available to people with a terminal illness and a life expectancy of six months. If you live longer, you can often stay on hospice care or go off and come back when you need it. People sometimes live longer than expected because they get such good comfort care by a team of professionals who view you as a person, not as a disease. Hospice care is most beneficial when there is sufficient time to manage symptoms and establish a trusting relationship.

Does choosing hospice means giving up hope?

Hospice provides comfort and Quality of life when the hope for cure may not be possible. The hope for living each day to the fullest becomes the focus. We cannot know what life has in store for us. We have hope to spend time with our loved ones and hope to enjoy the moments life has to offer.

Is care at end of life very expensive?

Medicare beneficiaries pay little or nothing for hospice. Most insurance plans, HMOs and managed care plans include hospice coverage. Most medications, oxygen, and equipment for comfort and safety are covered and Medicare or your insurance will continue to pay for health care that is not related to your life-limiting illness. As a not-for-profit organization, Kansas City Hospice & Palliative Care is committed to caring for people in our community regardless of their ability to pay.

Can I keep my own doctor if I enter hospice?

Your hospice team works closely with your own doctor to determine a plan of care and has expert hospice and palliative care physicians available when you need them.

Does choosing hospice means giving up all medical treatment?

Hospice put you and your family at the center of the care-planning process and provides high-Quality pain management and symptom control. You choose from many options that are available for medical, emotional and spiritual care.

Is hospice is just for the elderly?

Hospice serves anyone facing a life-limiting illness, regardless of age. Special care teams are available for children and teens. Even families expecting a baby with limited life expectancy may receive care.

If I choose hospice, does that mean my family cannot take care of me?

Hospice embraces families and offers the education, professional support and training they need to help them care for their loved ones.

Does hospice care start when someone is close to dying and end at death?

Care can begin at the time of diagnosis and follow you through all the stages of your disease. People who begin palliative care earlier may feel better, enjoy a higher Quality of life and live longer. From supportive care at home, into hospice care and with inpatient options at the Kansas City Hospice House™, you may have care and support at whatever stage you choose, care that extends beyond death to support your family during the grieving process.

Is there a strict limit on length of hospice services?

Although your physician is asked to certify a life expectancy of six months or less, there is no limit to the length of hospice services. If your condition stabilizes or if there is a change in the goals of the plan of care, you may be discharged from hospice. You may choose to discontinue hospice care at any time or for any reason.

Can people in hospice be hospitalized?

You may be admitted to the hospital for symptom control if required. We offer care at the Kansas City Hospice House™ as an alternative to the hospital. Extended hours of in-home skilled nursing care are also available.

Must people be homebound to qualify for hospice?

Many people in hospice are able to continue an active lifestyle, including visiting friends, spending time with family and pursuing hobbies.

Do people in hospice have to sign a Do Not Resuscitate (DNR) order?

You are not required to sign a DNR order. We appreciate how difficult it is to make the decision about resuscitation. Our staff is available to assist you and your family with end-of-life decisions and with the preparation of advanced directives, as you request.

Since hospice care is only available for six months, should I delay enrollment as long as possible?

People can stay on hospice care as long as medically necessary while the disease takes its normal course. Hospice eligibility requires a prognosis of less than six months, but people who survive that period can come on and off hospice care, or be re-certified for hospice care as necessary.

Does hospice give you so much medicine that you are out of it, sleep too much and become addicted to pain medication?

One of the goals of hospice care is to help you be comfortable, pain free and as alert as possible.

Does morphine cause you to die sooner?

Hospice uses morphine and other pain medications to keep you comfortable. It does not cause death.

Does hospice stop feeding people, letting them become dehydrated and starve to death?

Hospice encourages people to eat and drink only what they want. It is natural for some people to not feel hungry or thirsty. This is part of the dying process as the body shuts down. Your hospice team will work with you and your family on this and other decisions. See Safe Passage: Decisions on Artificial Foods and Fluids.

Is hospice only for the sick family member?

The focus of hospice is not only on medical care, but on the emotional and spiritual needs of the entire family. We assist family members and caregivers during the illness and offer grief support during the thirteen months following death.

Is it a difficult process to begin hospice care?

It only takes one phone call. We take care of everything else. We will work with your physician to determine what care is appropriate and arrange for services to begin.

If you go on hospice, does it mean you “give up” all treatment, all hope?

The fact is that Hospice provides excellent medical care for pain and symptom management. People on hospice often live as long as or longer than people who are aggressively treating an advanced illness.

Is hospice only for people who need a lot of care?

Many people begin palliative care or hospice services when they need only intermittent care. By starting care early, they are able to slowly increase services and support as needed during the course of their illness.

Is hospice only for people whose family can provide most of the care?

While hospice encourages the presence of an able and willing primary caregiver, it is not absolutely necessary.

Is hospice only for people who can accept death?

Acceptance of death is a very personal matter. To receive hospice care an individual simply needs to choose symptom management and supportive care over curative treatments like chemo therapy that may cause uncomfortable and unpleasant side effects.

Do you have to choose between hospice and palliative care?

Palliative or supportive care is the treatment of pain and symptoms and it is an important part of hospice care. Some people who do not have a limited life expectancy or are still seeking curative treatments may choose to receive palliative care services only. These services help people manage pain and symptoms such as nausea, insomnia, anxiety or other unpleasant side effects from their illness or treatment. If hospice is needed at a later date, you may transition without having to go to another provider.

Aren’t all hospice programs the same?

All licensed hospice programs must provide certain core services, but the range of support services and programs will differ. The differences between hospices include: not-for-profit or for profit status, staff experience and credentials, length of time in operation, based locally or part of a chain, specialized services offered, availability of inpatient care, number of volunteers available, types of volunteer services offered, and results of Quality reviews. There are more than 30 hospices operating in the Kansas City area. Like anything else you may be considering, it is wise to be a good consumer by researching your options.

Does hospice provide 24-hour care?

The hospice team visits regularly and is available 24 hours a day every day for support and care. As a part of core services, hospices provide “continuous care,” but people must meet certain guidelines given by Medicare, Medicaid and insurance providers. Continuous care is provided during a period of crisis to keep you at home. It is not intended to replace the care provided by your caregiver for long periods of time. Volunteers are sometimes available to sit with you for short periods of time to give your caregiver a break.

Does a doctor decide whether people should receive hospice care and which provider is chosen?

The role of your doctor is to recommend care, whether hospice or curative treatment. It is your right and your decision to choose when hospice is appropriate and which program suits your needs. Before entering hospice, however, a doctor must certify that you have been diagnosed with a terminal illness and have a life expectancy of six months or less.

When should a decision about entering a hospice program be made, and who should make it?

Any time during a life-limiting illness is an appropriate time to discuss all of your care options, including hospice. The decision belongs to you. Many people are uncomfortable with the idea of stopping aggressive effort to cure their disease. Our staff is very sensitive to these concerns and we are always available to discuss options with you, your family and your doctor.

Should I wait for my physician to raise the possibility of hospice, or should I ask first?

You and your family should feel free to discuss hospice care at any time with your physician, other healthcare professionals, clergy or friends.

What if our physician does not know about hospice?

Most physicians are fully informed about hospice. If your physician wants more information, we have staff available 24 hours a day to answer any questions. Our experts are always available for a consultation.

Can someone in hospice go back to regular medical treatment?

Yes. If your condition improves and the disease seems to be in remission, you may be discharged from hospice and return to aggressive therapy or go on with daily life. If you need to return to hospice care later, Medicare and most private insurance will allow this.

Is there any special equipment I must have before hospice care begins?

Your hospice team will assess your needs, recommend any necessary equipment, and help make arrangements. Often the need for equipment is minimal at first and increases as the disease progresses. You hospice team will assist in any way they can to make home care as convenient, clean and safe as possible.

How difficult is caring for a dying loved one at home?

It is never easy and sometimes can be quite difficult. Hospices have staff available, usually by phone, around the clock to consult with the family and to make night visits as appropriate. Your team will work with you to help you understand how you can best help your loved one and to bring assistance when you need it.

Does hospice do anything to make death come sooner?

No. Hospice does nothing to speed up or to slow down the dying process. Hospice focuses on living each moment to the fullest and works with people to meet their goals as the end of life nears.

How does hospice manage pain?

Hospice professionals are very experienced with the medications and devices used for pain and symptom relief. We believe that emotional and spiritual pain are just as real and need as much attention as physical pain, so we seek to address these as well. Counselors, including chaplains, are available to assist you and your family members.

How successful is hospice in dealing with pain?

Very successful. Using a combination of medications, counseling and other therapies, most people can achieve a level of comfort that is acceptable to them.

Is hospice affiliated with any religious organization?

No, hospice care in general is not affiliated with any religion. Some religious organizations have started hospices, but hospices serve their communities regardless of religious affiliation.

If someone is not covered by Medicare or any other health insurance, will hospice still provide care?

The first thing we will do is find out whether you are eligible for any coverage you may not be aware of. Through our generous donors and wonderful volunteers, we are able to provide services regardless of your financial situation.