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Choosing Hospice Consumer's Guide

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Choosing Hospice Consumer's Guide Choosing Hospice a consumer’s guide Table of Contents Introduction ............................................................2 What makes hospice care special? .........................4 Minnesota Network of Hospice & Palliative Care (MNHPC) promotes quality of life in Minnesota How will hospice care provide support communities through education and access to resources in advance care planning, palliative for me and my family? ...........................................6 care and hospice care. What if I live alone or don’t have Our vision is that all individuals, families and family nearby? .......................................................7 providers will understand the value of and have access to these resources. Who is eligible for hospice care? ...........................8 With provider members across Minnesota, the work of MNHPC touches communities through- How is my care paid for? .......................................8 out the entire state. How do I find a hospice program? .......................10 Glossary ...............................................................12 Originally written in 1997 with a grant from the Allina Foundation as part of its Project DECIDE Program. © 1997 Minnesota Hospice Organization. All rights reserved. © 2nd Edition, Revised 1998. All rights reserved. © 3rd Edition, Revised 2000. All rights reserved. © 4th Edition, Revised 2009. All rights reserved. © 5th Edition, Revised 2010. All rights reserved. Made accessible in 2016 by funding from a Live Well at Home Grant from Minnesota Department of Human Services. 1 INTRODUCTION The thought that you or someone you love According to the wife of a hospice patient, is dying can be overwhelming. It may seem “Thank you for being “We knew that Mark’s prognosis wasn’t that all is hopeless, that there is nothing honest with me, for good, but we also knew that we had today more you can do. educating me, hold- and that we had help from hospice. With ing my hand, leading that, we decided to do what we could for There is much you can do. Hospice care is me, caring about me, today—and for each day remaining. Our available to help you live comfortably with laughing with me, hope was to make one good memory of the love and support of family and friends. helping me in any way possible and each day. One day it was a special lunch Hospice care is a special way of caring for sometimes not so for just the two of us, another day we people living with life-limiting illnesses. possible ways.” organized pictures and recorded stories for the kids. Simple things like that. When Judy, friend of a you think about it, it’s not a bad way for Hospice care: hospice patient anybody to live.” » Emphasizes living your remaining days as fully The purpose of this booklet is to show how as possible; hospice care can help. The quotations are » Provides relief from the from people in Minnesota who have had physical, spiritual and firsthand experiences with hospice care. emotional pain that often Their words illustrate how hospice care accompanies a life-limiting helped them make the most of their loved illness; ones’ final days. » Supports the whole “You matter to the last individual and family; moment of your life, and we For those facing the difficult decisions » Provides grief support to will do all we can, not only that come with a life-limiting illness, help the surviving family. to help you die peacefully, is available and hope continues to be very but to live until you die.” much alive with hospice care. Dame Cicely Saunders, founder of the first hospice 2 3 WHAT MAKES HOSPICE CARE SPECIAL? HOSPICE CARE TEAM Hospice care is rooted in the centuries-old You and your family are the core of the hospice care team and are “The thoughtful tradition of preparing gifts for those at the center of all decision-making. insights and honesty embarking on a long journey. Today of the hospice hospice care is a special kind of care that philosophy allowed an individual and their family or loved ones us to move through choose. Hospice care helps people with YOUR DOCTOR NURSE this difficult time A doctor A hospice nurse with more under- life-limiting illnesses live their final months of your choice coordinates your care and standing and dignity in comfort and with dignity. directs your care. manages your symptoms. than I thought SOCIAL WORKER SPIRITUAL CAREGIVER possible.” Hospice care provides physical, emotional and spiritual support for you A hospice social worker helps A hospice spiritual caregiver your family to coordinate provides spiritual support Rachel, daughter of and your family in whatever setting you services and identify and works with your a hospice patient are most comfortable. community resources. community of faith. YOU AND GRIEF COUNSELOR YOUR FAMILY* HOME HEALTH AIDE “Our mother was A CARE TEAM AT YOUR DOOR A hospice grief A hospice home health counselor provides aide assists with bathing able to die under Hospice brings a caring team right to your support for your family. and other personal care. almost ideal door—whether your home is a house or conditions. The apartment, a nursing facility, assisted living OTHER THERAPISTS MEDICAL DIRECTOR privacy allowed us A physical, occupational, A hospice medical director over- to deal openly with setting or residential hospice. nutritional and/or speech sees the treatment by the hospice our feelings and to therapist is available for care team and coordinates with Care is available from your doctor and a give comfort to our your comfort. the attending physician. mother in a much hospice care team of professionals that VOLUNTEER more personal way.” include nurses, social workers, spiritual A hospice volunteer provides caregivers, grief counselors, home health a variety of services, including companionship and respite George, son of a aides, volunteers and physical, care to give your family a rest. hospice patient occupational, speech and nutritional therapists. Because your needs are unique, the hospice care team works with you to * A family may include relatives, friends, neighbors, or extended family. develop a personalized plan for your care. 4 5 HOW WILL HOSPICE CARE TO SUPPORT YOU AND YOUR FAMILY, THE HOSPICE CARE TEAM: PROVIDE SUPPORT FOR ME » Provides comfort care, including medications and therapies to relieve pain and symptoms; AND MY FAMILY? » Is available 24 hours a day to answer questions; Many families have little or no experience » Offers emotional counseling and spiritual support; in caring for someone who is dying. This is » Teaches specific care techniques, such as turning, positioning where hospice can help. and transferring, bathing and administering medications; » Arranges for necessary equipment such as hospital beds, Hospice care provides the “I felt a very heavy burden oxygen, bedside commodes and wheelchairs; support, the teaching and on my shoulders lighten the expertise to enable perceptibly because I » Coordinates any additional help and special services needed in your family to provide knew there would be the home; needed care. trained people to share with our family the care » Provides information about alternative settings, such as nursing Your family is expected, with guidance of my husband.” homes or residential hospices; from your hospice care team, to: Shirley, wife of a » Offers grief support, which may include writing letters, making hospice patient » Provide a safe, comfortable telephone and personal contacts, counseling, or providing environment for your care; opportunities to share experiences in organized support groups. » Alert the hospice care team of changes in your condition; » Help with personal needs such as feeding, WHAT IF I LIVE ALONE OR bathing, turning and giving medications. DON’T HAVE FAMILY NEARBY? The care of each person varies. Some are active and independent. Some are confined The hospice care team can talk to you about choices for staying to bed and require intense care. Some require safe and comfortable in your home, even if you live alone. a little of both. The frequency and type of Hospice services may also be available in your region through hospice services are tailored to meet the nursing home facilities or residential hospices. needs of you and your family. 6 7 WHO IS ELIGIBLE MEDICARE Hospice care is covered by the Medicare Hospice Benefit (Part A). Covered Services FOR HOSPICE CARE? You may choose this comprehensive benefit if: Under Medicare » You are eligible for Medicare Part A; » Physician services Hospice care is appropriate for people » Nursing care » Your physician and the hospice medical director certify that you with any terminal illness, as determined » Medical equipment have a terminal illness with a life expectancy of six months or less; by the patient’s physician. Care is provided » Medical supplies » You enroll in hospice instead of the standard Medicare benefits for » Medications for regardless of age, nationality, gender, care of the terminal illness; and symptom management race, creed or sexual orientation. » You receive care from a Medicare-certified hospice program. and pain relief* » Short-term inpatient care Medicare pays only for services that are authorized by the hospice » Respite care* program. 24-hour care is paid for only in times of medical crisis. You » Home health aide and HOW IS MY CARE may discontinue the hospice benefit at any time and resume your homemaker services standard Medicare benefit. » Physical, occupational, PAID FOR? and speech therapy While enrolled in hospice, standard Medicare benefits are still » Medical social services Hospice services are paid for by Medicare, » Dietary and other available for treatment of health problems unrelated to the terminal Medical Assistance, MinnesotaCare, most counseling illness, and all Part B benefits for physician services are also available. private insurance companies, or you may * Medicare pays for the pay privately. Veterans’ benefits are also If the hospice you choose is not Medicare-certified, it will provide entire cost of these services. available. Your hospice program works some services and work with other agencies to provide services that However, the hospice has with you and your family to identify ways will be paid for by Medicare.
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