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Patient and Caregiver Handbook Sponsored by the generosity of the Elaine Seldin Kornblum Hospice Fund and the Harvey Kornblum Foundation BJC Hospice Patient and Caregiver Handbook 1 Table of contents Section one: Welcome How to contact your care team......................................................................................... 6 Your team/staff.................................................................................................................. 7 Grief support services..................................................................................................... 10 Other grief support services............................................................................................ 11 Complementary therapies............................................................................................... 13 Section two: Calling your team Calling your team............................................................................................................ 15 Top reasons to call your nurse........................................................................................ 16 Frequently asked questions............................................................................................. 17 Other important things to know...................................................................................... 21 Section three: The choices are yours Rights & responsibilities................................................................................................. 24 Advance directives.......................................................................................................... 27 Hospice responsibilities.................................................................................................. 30 Patient responsibilities.................................................................................................... 32 Section four: Safety Home oxygen safety....................................................................................................... 37 Fire prevention................................................................................................................ 40 Home safety measures.................................................................................................... 41 Medication policy & safety tips...................................................................................... 44 Home infection control measures................................................................................... 47 Section five: Ideas for support Activities to make your loved one feel comfortable....................................................... 50 Nutrition and hydration................................................................................................... 51 Understanding pain......................................................................................................... 52 What to expect in the final stages of life......................................................................... 54 How you will know that death has occurred................................................................... 56 2 A letter from the director Dear Friend, You have found yourself on a journey that you didn’t choose and on a path that seems uncertain. We at BJC Hospice are here to stand with you, side by side, to guide you and your family and to provide excellent care. We are here to help minimize pain, fear and uncertainty, and maximize love and occasions of joy. Hospice recognizes death as a normal process. Hospice neither hastens nor postpones death, but rather provides physical, psychological, social and spiritual care so that you may live each day to the fullest. The focus of your treatment at this time changes from curative care to comfort care, minimizing symptoms, while providing support to your loved ones as well. Sharing your expectations and goals of care with us will help us in providing you with excellent care specific to your needs. A nurse, chaplain, medical social worker and complementary therapists are there for both you and your family to provide the best medical, emotional and spiritual support available. Medical equipment, medications and supplies are made available to you when related to the terminal illness; trained volunteers provide friendship or help with household needs; special therapies such as healing touch, massage, art and music therapy; grief counseling and memory projects are available. As you can see, our services are unlike any other health care provider. And we bring our services to where you are: in your own home, senior living residence or at the hospital. The Hospice team is available 24 hours a day, seven days a week to assist you. Should you have any questions or problems, we are here to help. Please remember, though, that problems are more easily solved during the day, when physicians and resources are more readily available. Don’t wait to call us – we don’t want small problems to turn into bigger ones. Our goal is to provide excellent care. If you believe we are not meeting this goal, please call me at 314-953-1621. We want this process to be one that provides you with positive experiences and respect for you and your family. Thank you for choosing BJC Hospice. This booklet will help you understand what to expect as a patient and family served by BJC Hospice. Peace to you, Barbara Westland, Director BJC Hospice 3 A letter from the director BJC Hospice is a nonprofit organization that provides compassionate end of life care to families regardless of their ability to pay. Donated funds enable us to care for members of the community who do not have the needed resources to care for their loved ones. All donations are used in your local community to support the needs of your family, friends and neighbors who reside there. Many families choose to suggest to their friends and family members that tax-deductible donations can be made to BJC Hospice in honor or in memory of their loved one. If that is of interest to you, these caring donations can be made by mail to: BJC Hospice Foundation P.O. Box 957421 St. Louis, MO 63195-7421 Make an online donation to: www.bjchospice.org To request donation envelopes, please call your local BJC Hospice office at the number listed below. We are thankful for the opportunity to support you during this difficult time. St. LouisSullivan 314-953-1695573-468-3630 IllinoisParkland 618-463-7100 573-760-8550 4 Section one Welcome 5 Welcome Your care team and how to contact them Who is my care team? The members of your team are: Nurse/Case manager: _____________________________________________________ Social worker: _______________________________________________________ Chaplain: ________________________________________________________ __ Home health aide/Homemaker: ________________________________________ Volunteer: ________________________________________________________ Patient care supervisor: _______________________________________________ Other: ___________________________________________________________ ___________________________________________________________ The Hospice staff will wear identification badges and will introduce themselves to you. ur team You can reach yo If you are concerned about the y calling: b identity of an employee, call the hospice office. St. Louis 314-872-5050 l free) BJC Hospice provides 24-hour 877-227-8718 (tol assistance, seven days a week. Normal agency hours are: Sullivan 8 a.m.-4:30 p.m., Monday 573-468-3630 through Friday. Illinois 618-463-7100 Hospice nurses are available after hours and on weekends Parkland when medically necessary. 573-760-8550 6 Welcome Your team/staff Hospice provides a circle of support for the terminally ill and their loved ones. An entire team of specially trained individuals is there for both the patient and family, while providing the best medical, emotional and spiritual support available. Professionals trained in hospice care help the patient and loved ones address the significant transitions taking place in their lives. Hospice nurse A team of nurses work closely with your case manager and monitor your physical health and communicate any changes or medication needs to your primary physician. Nurses complete a physical assessment during each visit, and are expert in pain and symptom management, nutrition and wound care. They also teach caregivers how to manage the day-to-day care of the patients. A case manager is responsible for coordinating care with other members of the care team and with your primary physician. Medical social worker Our social worker provides emotional support and helps families locate community resources or financial assistance needed. Social workers help caregivers manage the stress of providing care, and counsel patients and families to help cope with the emotional impact of the illness. They can assist with hourly care or nursing home placements and assist with advance directives and funeral arrangements. Chaplain Our chaplains are specially trained, highly credentialed and dedicated to respecting patients’ varied spiritual beliefs. Chaplains contact each patient to provide spiritual support, through open conversation, celebration of religious sacraments and contact of religious leaders in the community if requested by the patient. They can also officiate at funeral or memorial services. Hospice aide/Homemaker Hospice aides receive special training to provide personal care, such as bathing, nail care, oral hygiene and other personal care needs. They can help prepare small meals and assist you with ambulation. The nurse will set up a plan of care for the aide based upon the needs that are identified with you and your family. A homemaker is available to help with some minor housekeeping and/or meal preparation to assist the patient in their home. 7 Welcome Your Team/Staff (continued) Volunteers If volunteer support is desired, a trained volunteer will be assigned to fit the needs of the patient and family. Volunteers can: • Visit with patients, families and other caregivers at home, in a nursing home or hospital • Provide child care • Run errands • Do simple household tasks • Prepare simple meals • Relieve the caregiver for short periods • Provide relaxation therapies such as Healing Touch or Reiki • Go on social outings with patient or family members • Provide pet visits • Provide hair cuts Volunteers cannot: • Administer medications • Change soiled linens • Feed patients • Provide direct personal care Your team members are committed to service excellence standards in: • Communication • Compassionate care • Teamwork • Professionalism • Accountability 8 Welcome Volunteer Specialty Services Lumina Lumina is a program offered, free of charge, through BJC Hospice and the Wings program to interested patients and their families. It offers patients, both adult and pediatric, the opportunity to preserve the stories, values, ideals and experiences that define their lives. Lumina volunteers are extensively trained and are devoted to the thoughtful work of asking, listening and crafting the patients’ stories. They enter into the experience reverently, recognizing the memories as treasures and the disclosures as offerings to be honored. Lumina can provide: • Letters to loved ones • Memory books and journals •Scrapbooks • Memory videos and audio recordings • Ethical wills (detailing values and beliefs) • Genograms (family trees) • Lifelines (detailing important memories and events) • Memory pillows, bears and quilts made from the patient’s clothing • Treasure chests including a memory book and meaningful trinkets for patients who have dementia • Memory boxes PasSage Program A program in which specially trained volunteers provide support, companionship and education to the hospice patient and their family in the final days of the patient’s life. The PasSage volunteer will be present with the patient and the family to provide compassionate support, decrease anxiety, and act as a liaison for the hospice team. They devote their time and energy to the family in the final hours by attentively meeting their needs. Passage volunteers are companions, not caregivers and they offer empathic support and attentive presence. They may sit in quiet reflection, provide a gentle touch, or a listening ear to loved ones. They are a calming, peaceful presence for the individual and their loved ones. 9 Welcome Grief Support Services Everyone grieves differently both before and after a loved one’s death. For this reason, BJC Hospice provides a comprehensive bereavement program with a wide range of support and programs. This program follows the bereaved for 13 months after their loved one’s death and includes: • • • • • • Anticipatory grief support for caregivers and family members prior to their loved one’s death (see more information below) Home visits by bereavement specialists for individuals and/or families after the death Referrals to community grief support services such as support groups and therapists Follow-up telephone calls for support and resources An invitation to a memorial service to honor and remember as a community Informational bereavement mailings BJC Hospice bereavement staff are available for assistance at any point on your journey with grief. Their goal is to promote positive expressions of grief and encourage healing and growth. They can provide information about things such as coping strategies, typical grief and using or expanding your support system. BJC Hospice’s bereavement programs are made possible through generous donations from the communities we serve. This allows us to provide all of the following programs to our hospice families and members of the community. Anticipatory Grief Support Helping children and teens cope before the death. Bereavement specialists can provide support for families with children and teens before the death of the patient occurs. The specialists assist children and teens in working through their grief by participating in meaningful, age-appropriate activities. These activities can include talking, writing, art, play or music and they encourage children and teens to express feelings, ask questions and say goodbye. Parents and grandparents are assisted in determining how to best inform their children about the illness and impending death. Guidance is also provided in how to prepare children before a visitation and/or funeral as well as how to support them during these events. To learn more about the BJC Hospice grief support programs, visit www.bjchospice.org/videos or call 314-872-5050. 10 Welcome Other Grief Support Services All of these programs are available to our hospice families and members of the community at no cost. Stepping Stones Camp This weekend camp is designed for children ages 6-12 who have experienced the death of a family member or close friend. Every August, children meet at Camp Wyman in Eureka, Mo., to safely express their feelings, identify coping tools and connect with other children who have gone through the same experience. With the support of professional staff and volunteers, the children participate in therapeutic activities as well as traditional camp fun and games. SM SM Labyrinth This one-day grief retreat is for teens, ages 13-19, who have experienced the death of a friend or family member. Held annually in April, teens spend the day at Camp Wyman in Eureka, Mo., participating in team-building activities, small group discussions , and creative, handson experiences. Weavings This powerful weekend retreat, held in October, is for mothers who have experienced the death of a child form birth to age 29. Professional grief counselors and volunteers encourage sharing and healing while leading activities of celebration and remembrance for each child. 11 Welcome Other Grief Support Services (continued) Daybreak This one-day retreat provides an opportunity to meet the unique needs of a couple grieving the death of their child from birth to age 29. Grief counselors provide education about different grieving styles and coping tools, while allowing couples to explore their own grief processes. Activities encourage communication, partnership and a sense of hope. Wings on Wheels (W.O.W) Wings on Wheels supports children in the community who have been affected by illness and loss. The W.O.W. van goes to community groups and families to serve people where they live, work and play. A specially trained therapist leads creative activities to help children explore their thoughts and feelings, celebrate life and honor relationships. Contact us if there is a group of children who will be impacted by your loved one’s illness or death to discuss how W.O.W. can best support them. Threshold Threshold is a support group for people aged 30-60 who have experienced the death of their spouse or partner. The support group is facilitated by a grief counselor and has four weekly sessions followed by ongoing monthly sessions. This group meets in the evenings in University City. Threshold provides a safe, intimate environment for participants to explore the challenges and opportunities present after significant loss. Portals Portals is a support group for people over the age of 30 who have experienced the death of their spouse or partner. The support group is facilitated by a grief counselor and has four weekly sessions followed by ongoing monthly sessions. This group meets in the evenings in St. Peters, Mo. Portals can be a doorway to hope even when hope seems unimaginable at first. To learn more about BJC Hospice grief support programs, visit www.bjchospice.org/grief, email [email protected] or call 314-872-5050. 12 Welcome Complementary therapies To learn more about these complementary therapies, contact your nurse. Some therapy services may not be available in your area. Therapy and dietary services Physical therapy, occupational therapy, speech therapy and a registered dietician are available to help with your loved one’s comfort care to the extent that it would add to the patient’s safety and quality of life. Music therapy Music therapy involves using music in the treatment of pain, anxiety and for shortness of breath. It is also available to reduce isolation and promote reminiscence. Music has been found to reduce pain perception, blood pressure, heart and respiration rate; decrease anxiety; and positively affect the immune system. It can lift the mood of the patient and family. The music therapist may involve the patient in singing or listening to music, especially songs that have special meaning to the patient. Music can be used for relaxation, musical life review and the creation of personal recordings. This therapy may involve the family members and can enhance communication and provide comfort for all involved. Massage therapy Massage is the systematic manipulation of soft body tissue for relaxation and for promoting health of the mind, body and soul. It reduces anxiety, relieves physical tension and/or pain, improves sleep, reduces blood pressure and strengthens the immune system. Healing Touch The goal of Healing Touch is to restore harmony and balance in a person’s energy system in order to enhance that person’s sense of well-being. During a session, the client remains fully clothed and relaxed. The practitioner’s hands are placed gently on or slightly above the body to realign or activate the energy flow. Sessions may last between 5 minutes to an hour, depending on the need. Reiki Reiki is a non-invasive touch therapy that helps the body by removing blocks in the body’s energy field, aligning and balancing its energy centers and straightening the body’s energy pathways. Reiki is administered by a softer touch than the deep pressure of massage. Patients usually lie down fully clothed on a massage/reiki table. The practitioner places his or her hands on the head, neck, chest, abdomen, legs and feet, giving each area about five minutes of light touch. 13 Section two Calling your team 14 Calling your team Calling your team We are committed to helping our patients and families by being available to help you. Please call if you have questions, concerns or fears. We are here for you. When should I call during the 8 a.m.-4:30 p.m. regular office hours? • You have a question or message for one of your care team members • You need medication refills, medical supplies or medical equipment that you are unable to arrange during a regularly scheduled home visit • You need to arrange for the pick up of medical equipment or supplies • You need to cancel a scheduled visit • You need to discuss a problem with a supervisor When should I call after hours, on weekends and holidays? • You have questions or fears about a change in symptoms, such as increased pain or agitation • You see an unexpected change in physical or emotional condition that concerns you • You observe symptoms such as increased breathing difficulty, discomfort or agitation • You have malfunctioning medical equipment • You have a power failure • Your loved one passes away What happens when I call after hours? • You will be asked if you are on the adult or pediatric Wings team, the patient’s name and telephone number. • The on-call nurse will be paged and you will receive a return call within 15 minutes. If you do not hear from the nurse within that time, please call again. • When the nurse returns your call, explain your concern. You and the nurse will then determine a plan of action. • If your needs are not met to your satisfaction, please request the supervisor. 15 Calling your team Top reasons to call your BJC Hospice nurse 1. You are taking prescription pain medicine more than four times a day and pain is not controlled to your satisfaction 2. Your pain has changed in strength, intensity or duration and is not controlled with medication 3. You have less than a four-day supply of medicines supplied by hospice 4. Your doctor has ordered a new medicine for you 5. You haven’t had a bowel movement in three days 6. You have fallen – even if you can get up and think you are not hurt 7. You are more short of breath than usual 8. You have bleeding from any location 9. You start having nausea, vomiting or diarrhea 10. You are experiencing confusion, agitation, anxiety, sleeplessness or seizures 11. As a caregiver, you are fearful or stressed and need someone to talk to 12. You plan to go out of town 13. You want to call 911 for any reason 16 Calling your team Frequently asked questions for BJC Hospice patients and their families What is hospice? Hospice is a philosophy of care for people faced with a life-limiting illness. It is designed to provide comfort care while ensuring respect for quality of life. It supports patients with pain and symptom management needs who have chosen comfort rather than curative care. Hospice serves the patient and family together, caring for their physical, emotional, spiritual and practical needs. Who qualifies for hospice care? Patients whose physicians have given a prognosis of approximately six months or less, if their disease follows its normal progression, qualify for hospice care. What if the patient lives longer than six months? As long as the physician continues to certify the appropriateness of the patient for hospice care and the patient meets the guidelines, hospice care will continue after six months. How is hospice paid for? Hospice is paid by Medicare, Medicaid and most private insurance plans. Where is hospice care provided? Hospice can be provided in the patient’s home, hospital, extended care facility or residential care homes. Your insurance plan provides specific coverage guidelines. What happens in the first 48 hours of hospice service? The nurse or social worker will visit the same day or within 24 hours of referral. The patient will sign an informed consent and hospice election and the nurse or social worker will review financial and insurance information. A complete physical assessment will be done by the nurse, who will collaborate with the physician on the hospice plan of care developed with the patient and family. Helpful suggestions will be given to the patient and family regarding daily care and comfort measures. A schedule for visits will be developed, and the nurse will contact the other services needed. Does hospice cover equipment and supplies? Hospice covers basic medical equipment like hospital beds and wheelchairs, as well as items like dressing change supplies and medications that are related to the terminal illness. Things not covered by BJC Hospice include nutritional supplements, over-thecounter or personal hygiene items such as tissues, lotion, shampoo, etc. 17 Calling your team How do we get the medicine? The hospice nurse will obtain an order for the medication from the physician. The BJC contracted pharmacy provides the medicines that are related to the patient’s primary diagnosis and are included in the hospice formulary. A 14-day or less supply is ordered at one time. All new medications require approval from BJC Hospice. The nurse will review your medication supply with you on home visits to ensure you have the medications you need. Is hospice care provided in a senior living home? BJC Hospice offers all of the benefits of hospice care in the home to residents staying in a residential care facility, assisted living, intermediate care or skilled nursing facility. Hospice staff will provide instruction to the resident, his or her family, and the senior living staff to ensure the resident’s comfort. Hospice care complements services provided by senior living home staff by providing additional nursing, home health aide, social work, spiritual care and volunteer services. Hospice team members will attend care planning meetings at the senior living home to coordinate the plan of care with the staff and family. Does hospice pay for the room and board in a nursing home? Room and board in nursing facilities is billed by hospice for patients who have Medicaid. How often will a nurse visit and how long does the visit last? It will vary according to the patient and family needs. Most patients are initially seen by a nurse two to three times per week, but visits may be more or less frequent based on the needs of the patient and family. What other services may be involved? Other disciplines who may visit include a medical social worker; chaplain; hospice medical director; physical therapist, occupational therapist, speech therapist; home health aide; homemaker; a music or massage therapist; bereavement specialist and volunteer. What does a homemaker provide? A homemaker provides light housekeeping and/or meal preparation to assist the patient in remaining in their home. What if we don’t want all of the disciplines to visit? The patient and family are free to decide which services they feel they need. A nurse, chaplain and medical social worker are the essential services needed to ensure the patient’s plan of care is responsive to his or her needs. 18 Calling your team What kinds of things would a volunteer help with? Volunteers do a variety of things including caregiver relief, errands, reading, making scrapbooks, cooking and housekeeping. BJC Hospice has both adult and teen volunteers to support our patients and families. May the patient have physical therapy, occupational therapy or speech therapy? A patient may receive therapy to the extent that it would add to the patient’s safety and quality of life. Does hospice have people who stay with the patient overnight? Hospice is a visiting service and does not provide in-home hourly care. If you are interested in hiring hourly care, our social worker can provide you with resources. What happens if we have a problem after hours? Hospice is available 24-hours-a-day, seven-days-a-week. Our phones are answered by the nurse-on-call or an answering service after hours. The triage nurse who will return your call promptly, usually within 15 minutes. Can we call 911? We ask that you call BJC Hospice first for all of your urgent needs. We will facilitate any care you may need. This will ensure that your care needs can be handled efficiently and effectively. What if the patient needs to go back to the hospital? By calling hospice first, we may be able to help keep the patient from having to be admitted to the hospital. If we are unable to control the patient’s symptoms at home, hospice will arrange for the patient to be directly admitted to the hospital for symptom management, bypassing long stays in the ER. What if the patient gets an infection? It can be treated with oral antibiotics if the patient/family desires. Will the nurse be drawing blood? Blood draws are not usually considered comfort care, but will be provided for management of symptoms. Will the patient keep his or her primary doctor? Hospice encourages the patient and his or her family to keep their primary physician. The nurse communicates with the primary physician on a regular basis. This keeps the doctor updated on the patient’s condition and addresses any changes needed on the plan of care. The patient may choose to have the hospice medical director as their primary physician, or if the patient does not have a primary physician. 19 Calling your team What if we decided we don’t want hospice anymore? The patient and his or her family can decide to discontinue hospice care at any time. Hospice will ask you to sign a revocation form if you no longer want hospice services. Can the patient travel outside of the BJC Hospice service area? Yes, this is possible if the patient can tolerate travel. Please notify hospice of any change of residence or transfer to another geographic area. When a patient travels outside of the 50-mile service area, please contact BJC Hospice prior to the travel, so a plan can be made for care needs. What happens at the time of death? You will call hospice and we will send a hospice staff member to the home, unless otherwise requested. We notify the physician, the medical examiner and the funeral home. You will not need to call 911. 20 Calling your team Other important things to know Payment As a nonprofit organization, BJC Hospice is funded through private donations as well as reimbursements by Medicare, Medicaid and private insurance. No one is turned away because of a lack of financial resources. Medicare and Medicaid hospice benefits Eligibility: Any individual entitled to Medicare Part A and/or Medicaid benefits and certified by their attending physician as being terminally ill (life expectancy of six months or less, if the disease follows its normal course) is entitled to use these benefits. Election to the hospice benefit: The hospice benefit is elected by you and your family and an “election” statement is signed and dated. The decision affects your regular Medicare/Medicaid only in regard to your terminal illness. Hospice is designed to be the single source of all health care related to your terminal illness; other care will be billed to your insurance plan. Your condition will be evaluated on an ongoing basis by the hospice team. If the patient’s condition has stabilized and the patient is appropriate for discharge, the team will develop a discharge plan with the patient and family. Confidentiality As a patient of BJC Hospice, you can expect to have confidentiality of your medical information and clinical record maintained by our staff. Clinical records are maintained in a secure, locked fire-protected area and are returned to this area at the closing of each day. It is our policy that access to your medical record is authorized only to those staff involved in your care. If payment is expected from a third party, such as Medicare or private insurance, the payer may require your medical records in order to determine coverage. Hospice also keeps patient records on a secured server, and these records may only be accessed by employees whose job requires access. All information will be kept confidential. The Lifeline System The Lifeline system includes a wireless communication device worn as a pendant or wristband that enables the patient to summon emergency help from within the home. With the push of the Lifeline button -- at any time, day or night -- the patient is quickly connected to a trained Lifeline response associate, who accesses the patient’s health profile and dispatches assistance. Lifeline with AutoAlert calls for help even when the subscriber cannot In addition to providing help at the push of a button, the Lifeline with AutoAlert option offers subscribers an added layer of protection. Lifeline with AutoAlert 21 Calling your team automatically places a phone call for help if a fall is detected and the subscriber cannot press the personal help button because he or she is disoriented, immobilized or unconscious after a fall. Lifeline with AutoAlert uses an easy-to-wear, pendant-style help button embedded with a microprocessor. The microprocessor receives data from multiple sensors that detect changes in the subscriber’s movement. It can determine when a fall has occurred, and automatically initiate a help call if the fallen individual has not gotten up within 30 seconds. Subscribers pay a low one-time shipping charge and a monthly fee, there is no contract to sign. Discounts for Lifeline services are available to patients of BJC Home Care Services. to request more information or for special offers, call 314-791-0363 or 877-419-5567. Home medical equipment BJC Home Medical Equipment provides 24-hour emergency assistance seven days a week. Office hours are from 8 a.m. to 4:30 p.m. After hours, the answering service will answer and put you in touch with the appropriate person. Call the home medical equipment office at 314-953-2000 or 800-456-9366 if you have problems with your medical equipment. BJC Hospice provides and covers the cost of medical and respiratory equipment when it is part of the Plan of Care and related to the terminal condition. 22 Section three The choices are yours 23 The choices are yours A Brief Summary: Missouri Law Regarding a Patient’s Right to Make Health Care Treatment Decisions Federal law directs that any time you are admitted to any health care facility, or served by certain organizations that receive Medicare or Medicaid money, you must be told about your right to make health care decisions. The requirement applies to all adult patients no matter what their medical condition. The law also requires nursing homes and other health care facilities to determine if you have an “advance directive,” and if so, to have a copy of it on file. They cannot, however, require you to have one as a requirement for admission. They must adhere to your wishes, if these are not in conflict with facility policies. These policies must be provided to you or your legal representative on admission. These pages are designed to provide information about your rights under Missouri law to accept or refuse medical treatment including life support. These are important personal health care decisions and they deserve careful thought. It is a good idea to talk about them with your doctor, family, friends, staff members of your health care facility, and if possible, a lawyer. DURABLE POWER OF ATTORNEY FOR HEALTH CARE: (Chapter 404 RSMo, Supp. 1991) On August 18, 1991, a law went into effect in Missouri that allows a competent adult to designate another person to make health care and treatment decisions if and when the adult is unable to do so. The act is known as the durable power of attorney for health care. The Durable Power of Attorney for Health Care • must be signed by the patient, witnessed and notarized; • becomes effective upon certification of the incapacity of an individual by two licensed physicians (unless the power of attorney document provides for a different number; but in any case, certification by at least one physician is required). • must provide a specific grant of authority to withhold or withdraw artificially supplied nutrition and hydration if the patient intends the designated person to be able to withhold or withdraw this type of medical treatment; and, • may be revoked by the adult, if competent, at any time and in any manner by which he/she is able to communicate his/her intent to revoke. 24 The choices are yours MISSOURI CASE LAW The Cruzan Case Cruzan v. Director, Missouri Department of Health • determined that a state has a right to require “clear and convincing evidence” that a patient would have, if competent, refused treatment; and, • established that there is a constitutional basis for persons to make decisions regarding their own medical care (including the withholding or withdrawing of food and hydration provided by artificial means). As applied in Missouri, the Jasper County Circuit Court in Cruzan v. Mounton • authorized the removal of nutrition and hydration based upon clear and convincing evidence that the patient would have desired the discontinuance of life support measures. “Clear and convincing evidence” can be established in many ways. Persons can execute a formal document developed by their attorney, can use a statutory declaration form or other printed advance directive form, or can even write something out in their own words. Whatever form or format you use, be sure to give a copy to your physician and health care provider. DEFINITION OF TERMS Advance Directive A general term used to apply to written advance health care treatment directives, often referred to as “living will” and durable power of attorney for health care Durable Power of Attorney for Health Care A signed, dated and notarized document that allows an individual to name an agent to make health care decisions in the event the person completing the document becomes incapacitated Health Care Treatment Directive Usually incorporated in a durable power of attorney for health care, health care treatment directives allow individuals to state in advance their wishes regarding health care decisions. Such directives are similar to a “living will,” however, they are far more comprehensive than most living wills. The health care treatment directives are not necessarily restricted to use only when one is terminally ill. Living Will A term used to describe a variety of advance directives. Usually it is used with a signed, dated and witnessed document indicating death procedures may be withheld or withdrawn. 25 The choices are yours MISSOURI LIFE SUPPORT DECLARATION ACT (Chapter 459 RSMo) On September 24, 1985, a law went into effect in declaration permitting the withholding of “death-prolonging procedures” if the adult has a terminal condition and is unable to make treatment decisions at that time. The act refers to the written authorization as a “Declaration.” Declaration • must be written, signed, dated and witnessed (unless wholly in the patient’s handwriting) • is only valid in cases of terminal illness • should be part of the patient’s medical record, and • may not include directives regarding withholding food and water or palliative medical care. Any person who executes a Declaration may revoke it orally, in writing, or in any other method of communication. SOURCES OF INFORMATION For more information regarding advance directives and the durable power of attorney for health care, contact: • your attorney • Midwest Bioethics Center 410 Archibald, Suite 200 Kansas City, MO 64111 • Missouri Bar Association 326 Monroe Jefferson City, MO 63501 26 The choices are yours Advance Directives Information for Residents in Illinois INTRODUCTION Thank you for choosing our agency. We are here to serve you. Your needs are important to us. This information is to help you and everyone who has to make health care choices. Many people are now living longer thanks to health care. Sometimes, making choices regarding health care can be very difficult. The following information helps you think about your health care choices. We are required by federal law to provide you with this information. Thinking ahead often makes choices easier. We encourage you to talk to your physician and family about your wishes for health care treatment. You may have heard about living wills, health care directives and durable power of attorney for health care. These are all “advance directives.” SUMMARY OF YOUR RIGHT TO MAKE DECISIONS ABOUT YOUR HEALTH CARE NOW AND IN THE FUTURE Under Illinois law, competent adults (18 years and older) have the right to make decisions about their health care. The courts of this state have recognized that this right should not be lost when a person becomes unable to make his or her decisions. Therefore, people have the right to accept or refuse any medical or health care treatment, including life-sustaining treatment. In order to enable them to make these decisions, patients have the right to be adequately informed about health conditions, treatment alternatives, likely risks and benefits of each alternative and possible consequences. The law now requires that patients be informed of the advance directives available to help assure that their wishes are carried out even if they are no longer capable of making or communicating their decisions. This document describes the advance directives that are recognized in Illinois. It should be kept in mind that every patient has the right to choose whether or not he or she wants to execute an advance directive. Power of Attorney for Health Care A Power of Attorney is a document that permits a person, called the principal, to delegate to another person, called the agent, the power to make any health care decisions the principal could make. 27 The choices are yours The scope of the power given to the agent may be as broad or narrow as the principal wishes. The standard form grants the agent broad health care decision-making powers which the principal may limit. The law does not, however, require that this particular form be used. The agency relationship created by the Power of Attorney also protects the rights of the third parties should the principal become incompetent. The agent, who can be anyone other than the principal’s physician or health care provider, will have final decisionmaking authority, even more than a court-appointed guardian would have. However, a court may step in when it is shown that an agent is not acting in the benefit of the principal in accordance with the terms of the Power of Attorney. The agent cannot accept payment. Alternative agents may be appointed if the named agent cannot or will not serve. The principal and agent must inform the physician and other health care providers of the agent relationship. Although under no duty to act, an agent must keep record of all actions taken under his or her power. The principal may revoke a Power of Attorney at any time, either verbally or in writing. Modifications to the Power of Attorney may be made only in writing by the principal. Living Wills The living will is a document that allows patients to describe their wishes about the discontinuance of death-delaying procedures when they become terminally ill. Because a living will is a statutory creation, the law must be followed carefully for it to be effective. The Living Will Act provides a form, but does not require use of that particular form. A living will may be made by any person who is able to make his or her decisions and who is at least 18 years of age, but it will not go into effect until the condition is defined as “an incurable and irreversible condition, which is such that death is imminent and the application of death-delaying procedures serves only to prolong the dying process.” Once the patient has a terminal condition, the living will can state that no “death-delaying procedures” should be used. Such procedures are those which “serve only to postpone the moment of death.” Procedures to ease pain and the withdrawal of artificial food and water if death would result from this withdrawal and not from the existing terminal condition are not considered “death-delaying procedures.” Under the Act, the patient must inform the physician or other health care provider of the existence of a living will. If the physician or other health care provider does not wish to comply with the provisions of the will, he or she must tell the patient, who may then transfer to another physician or health care provider. The patient may revoke the living will by destroying it, or indicating verbally or in writing that he or she wishes to revoke the living will. If the patient is pregnant and death-delaying procedures would allow the baby to develop to the point of live birth, the living will cannot take effect. 28 The choices are yours If a patient has both a living will and an agent with power of attorney for health care, the living will does not take effect unless the agent is not available. Do Not Resuscitate Order (DNR) “Do not resuscitate” (DNR) or “no code” orders are physician’s orders that tell nursing and other health care providers that the patient does not have to be revived if a patient suffers a cardiopulmonary arrest. Good health care practice and the policies of most health care agencies require that cardiopulmonary resuscitation (CPR) be started unless there is an order to the contrary in the patient’s chart or medical record. DNR orders are consistent with the other advance directives discussed here, but are not substitutes for these. In the Absence of Advance Directives This statement describes some of the ways you can ensure that your health care treatment will be handled according to your wishes even if you are no longer able to communicate your desires. If you have not executed an advance directive, decisions regarding your health care will have to be made by someone else (who might not be the person you would have chosen) and may place additional burdens on your family and physician or other health care provider. If you suffer from a terminal condition, permanent unconsciousness or an incurable or irreversible condition and the lack of ability to make decision, a health care surrogate may be chosen to make life-sustaining decisions for you. The surrogate who would act in such a case would be (in order of priority): guardians of the person, spouse, any adult children, either parent, any adult grandchildren, a close friend, or guardian of the estate. Under circumstances, legal actions may be required to have decisions made on your behalf. Statement of the Policy from BJC Home Care Services Each of our patients will receive total life-sustaining treatments unless the physician, patient and/or family decide otherwise. Sometimes a patient’s vital organs fail. At that time, “total life-sustaining treatment” means every appropriate and available treatment will be used to sustain life. Our patients, physicians, and families are encouraged to clarify with one another treatment options and both current and future treatment choices. The patient, or if the patient is unable to make decisions, the patient’s family, working with the physician, may decide to limit, withdraw or go without life-sustaining treatment. In order for BJC Home Care Services to honor your power of attorney for health care, living will or other advance directives, we require a copy be provided to us. 29 The choices are yours BJC Hospice Rights and Responsibilities Patient and Family Bill of Rights You have the right to hear your rights and responsibilities. This will happen at the first visit and before the start of care, treatment, or services. We will tell you these rights and responsibilities aloud and in writing. We will respect your age level and language. You and your caregivers have the right to be free from judgment. We respect all races, colors, religions, cultural or personal values, beliefs or preferences and national origins. We will not judge you on your source of payment, age, sex, or handicap. You also have the right to be free from restraints. BJC Hospice staff will treat you with respect and dignity. We will show respect for your items. Our agency’s staff will protect and promote your rights. Quality of care Patients have the right: • to get excellent care • to choose your health care providers (i.e. attending physician, hospice) • to be cared for by BJC Hospice only if we can provide the care level you need • to receive medical and nursing attention to provide comfort. Comfort is the goal because treatments to attempt to cure the disease are no longer possible. • to get a timely response from BJC Hospice when you ask for service • to be able to change hospices one time during the Medicare, Medicaid or Illinois Public Aid certification period We will only provide safe and professional care. You will get a complete assessment. We will manage your pain and other symptoms from conditions due to your terminal illness. As a patient of BJC Hospice, you can expect: • that staff will believe your reports of pain and symptoms • information on ways to manage pain and/or symptoms • that the caring staff is committed to preventing or managing your pain and/or symptoms • health professionals will act quickly on your reports of pain and/or symptoms • referral to other sources, if other types of pain and symptom management are needed • ongoing analysis of your pain and symptoms • attention to your response to changes in care 30 The choices are yours Decision making Patients have the right: • to know what services are covered under the hospice benefit • to know what services BJC Hospice provides • to know the limits on those services • to be involved in deciding on your care, treatment or services • to help develop and make changes to the plan of hospice care • to know in advance any changes to the plan • to know ahead to give consent for what care will be received • to know who will provide the care and how many visits to expect • to receive your state rights about making decisions on medical care • to accept or refuse treatment or services • to understand BJC Hospice’s policies on advance directives • to know the state law’s description of advance directives • to create an advance directive for medical care • to expect BJC Hospice to honor any provided state-compliant advance directive • to refuse treatment within what the law allows • to know the effects of refusing • to refuse experimental treatments • to refuse to participate in research • to keep your individuality • to get respect for your decisions even if different from others’ beliefs • to let your family or guardian carry out your rights if you are unable to make decisions • to decide on the disposition of your body, at and after death Dignity and respect Patients will receive: • an environment that respects your dignity • treatment that promotes a positive self-image • honest treatment delivered with high ethics • the full truth about your diagnosis and prognosis • respect for your property • respect for your person • investigation of any complaint of mistreatment • investigation on a report of neglect or abuse. This includes verbal, mental, sexual and/ or physical abuse. It includes any injuries from an unknown cause. It includes loss of your property. • freedom to state disappointment about care, treatment or services given or lacking • freedom to point out lack of respect for property by staff giving care, treatment or services through BJC Hospice • information on the toll-free home health/hospice hotline 31 The choices are yours Hospice responsibilities BJC Hospice has the responsibility: • to protect and promote your rights • to guard the privacy of your health information • to allow you to voice complaints or offer changes without being forced and to prevent any actions against you due to such reports. This includes discrimination and any undue stops in service. • to immediately report all actions you feel to be mistreatment, neglect or verbal, mental sexual and physical abuse to administration. The hospice administrator or person assigned by the administrator will: • research any blame towards anyone giving services for hospice • immediately take action to prevent future problems while the first actions are examined • take action according to state law to correct the situation if hospice administration or outside agencies with this authority have found the situation to be a violation. This must take place within five working days of being told about the violation. • to get a signature from you or your representative on receipt of your copy of the notice of rights and responsibilities Patient responsibilities Patients have the responsibility: • to tell BJC Hospice of changes in your condition. This includes items such as a hospital visit, changes to your care plan or new symptoms. • to tell BJC Hospice if the visit days or times need to be changed • to tell BJC Hospice if you have an advance directive or if you change it • to let BJC Hospice know of any problems or complaint with the services • to provide a safe environment for care to take place • to carry out any other agreements made between you and BJC Hospice • to provide true, complete information about your present complaints and other health matters • to recall past illnesses, hospital stays and medicines • to follow the care plan set up by the staff or to tell BJC Hospice if you cannot • to accept any results of your decision if you do not choose to follow prescribed treatment(s) • to pay your BJC Hospice account as promptly as possible • to tell BJC Hospice of any special needs. This may be assistive aides and/or interpretive needs. • to inform BJC Hospice about your health insurance plan • to tell BJC Hospice about changes in your health plan coverage • to make BJC Hospice aware of a break in or end of coverage 32 The choices are yours Your opinions count At BJC Hospice, we believe that exceptional medical care and excellent service go hand in hand. We strive to provide exceptional care. We will show courtesy, respect, support and promptness during any service we provide. We will ask a family member to fill out three separate surveys. This will happen after our care ends. We want to measure our response and our level of service quality. Your opinions are important to us. We appreciate the time you give to respond. About two months after the bereavement/grief support program starts, you will get a satisfaction survey in the mail. The return address will be from Deyta (our satisfaction survey partner). This survey is developed by the National Hospice and Palliative Care Association. BJC HealthCare will call you and ask questions for the second survey over the phone. We use these surveys to measure the care and service provided to your family. Please help us by taking the few minutes to answer the questions when asked. When you finish our grief support program (about 14 months after the death), Delta mails you a third survey. It will ask your thoughts on our grief support. This survey is written by the National Hospice and Palliative Care Organization. Please fill it out and return it. We value your opinion. This feedback helps us understand the needs of our families. We want to provide excellent care and services. We hope that you will tell your friends and relatives who need hospice services about BJC Hospice. If, at any time, you have compliments, problems, questions or concerns please call. Contact Barbara Westland, Director of BJC Hospice, at (314) 953-1621. We value your response to our care. 33 The choices are yours The Abuse, Neglect and Exploitation hotline number in Missouri is 1-800-392-0210. It is open 7 a.m. to midnight daily. All incidents of abuse, neglect or exploitation of any eligible adult shall be reported to the hotline during these hours of operation. Any imminent life-threatening situation shall be reported to 911; situations not meeting that threshold that occur between 8:00 p.m. and 8:00 a.m. shall be called to the hotline the next day. The Illinois hotline number is 1-800-252-4343. It is open 24 hours a day, 7 days a week. The hotline representatives hear complaints or questions about hospice agencies. You could call to complain about wrong information. You could report not receiving required information about advance directives. Financial information Patients have the right: • to know what payment is available from Medicare, Medicaid or Illinois Public Aid or any other payer • to know what charges will not be covered by Medicare, Medicaid or Illinois Public Aid or any other disclosed payer • to be read this information or to get it in writing • to ask to see all bills for service Privacy Patients have the right: • for confidentiality of all personal health, social and financial status • for privacy of what takes place in the home • to expect that BJC Hospice will only release information if you agree or the law demands it 34 The choices are yours The Joint Commission Public Notice Regarding Safety & Quality of Care The Joint Commission conducts an accreditation survey of BJC Home Care Services. The purpose of the survey is to evaluate the organization’s compliance with nationally established Joint Commission standards. The survey results are used to determine whether – and the conditions under which – accreditation should be awarded to BJC Home Care Services. Joint Commission standards deal with organization and safety quality of care issues and the safety of the environment in which care is provided. As a patient, family member, community representative or employee of BJC Home Care Services, you have the right to notify the Joint Commission regarding any concern you have about the quality of care provided, safety of care provided, or safety of the environment in which care is provided. Anyone believing that he or she has pertinent and valid information about such matters should notify: The Joint Commission Division of Accreditation Operations Operations Office of Quality Monitoring One Renaissance Boulevard Oakbrook Terrace, IL 60181 Phone: 800-994-6610 Fax: 630-792-5636 E-mail: [email protected] 35 Section four Safety 36 Safety Home Oxygen Safety When oxygen is in use, there is a higher risk of fire so it is important that you, your caregiver(s), family and/or visitors follow safety precautions to prevent injury, damage or even death. Oxygen itself does not burn, however, oxygen makes things burn faster and ignite easier. Risks and Dangers of Fire When Oxygen is in Use: It is easier to ignite a fire in an oxygen-rich environment More oxygen makes a fire spread faster Fire retardant materials may still burn in an oxygen-rich environment Smoking while using oxygen or in the same room as oxygen dispensing equipment is extremely dangerous and may result in fire or explosion You may damage your residence or other personal property as a result of fire or explosion You, your caregiver(s), other people or animals in the home may suffer burns and/or injuries as a result of fire or explosion Death may result because of fire or explosion 37 Safety • Post at least one NO SMOKING sign in a prominent place at the entrance of your home. • Never smoke while using oxygen. • Warn visitors not to smoke near you when you are using oxygen. • Stay at least 10 feet from gas stoves, candles, lighted fireplaces and other heat sources. • Keep oxygen cylinders and vessels in a well-ventilated area (not in closets, behind curtains, in trunks of cars, under beds, or other confined space). The small amount of oxygen gas that is continually vented from these units can accumulated in a confined space and become a fire hazard. • Keep oxygen cylinders and vessels a minimum of 10 feet from heaters, heatproducing and electrical appliances. • Secure oxygen cylinders and vessels to a fixed object or place in a stand. • Extra oxygen tanks can be stored flat on the floor in a clean, dry, well-ventilated place – out of direct sunlight and walkways. • When you go to a restaurant with your portable oxygen source, sit in a section away from any open flame, such as candles or warming burners. • In restaurants, sit as far away from the smoking section as possible. Explain the reason to your server/the manager, if necessary. • Always operate oxygen cylinder or container valves slowly. Abrupt starting/stopping of oxygen flow may ignite any contaminant that might be in the system. • Turn the cylinder valve off when not using your oxygen, (even if only removing cannula from face for a moment, intending to put it right back on). Oxygen can saturate the bedding/clothing/etc. where cannula is placed, possibly causing fire/ explosion. • Only use a properly grounded wall outlet for your oxygen concentrator. • Do not use extension cords for your oxygen concentrator. • Do not use equipment with frayed cords. • Do not place the electrical cord/oxygen tubing under rugs/furniture. • Do not use any flammable products (cleaning fluids, paint thinner) or aerosol sprays (hairspray) while using your oxygen. 38 Safety • Keep all grease, oil and petroleum products (many hand/body lotions) – even in small amounts – and flammable materials away from your oxygen equipment. Some organic material can react violently with oxygen if ignited by a hot spark. • Avoid using electric razors and hair dryers while using oxygen. • Use water-based lubricants on your lips and hands. Don’t use an oil-based product like petroleum jelly, petroleum-based creams or lotions. • Do not use bedding/clothes made of wool, nylon or synthetic fabrics, as these materials have the tendency to produce static electricity. The use of cotton material bedding/clothes will avoid sparks from static electricity. • Use a humidifier in winter to add moisture to dry air in your home. • Do not allow children/untrained individuals to handle or operate oxygen equipment. • Always have your gas supplier’s number handy. • Ensure that you have an all-purpose fire extinguisher close by and familiarize yourself with its use. OXYGEN FIRE SAFETY ACKNOWLEDGEMENT When oxygen is in use in the home, the patient and family will be asked to sign an oxygen fire safety acknowledgement. Safety Fire prevention You can help prevent fires by looking for fire hazards and correcting the problem. Smoke alarms are the first line of defense for early warnings of fire. 1. Have working smoke and carbon monoxide alarms on every floor of the home. 2. Test your alarms monthly. 3. Change the battery in your alarms at least yearly. 4. Have a fire escape plan that includes at least two exits from each room and plan ahead for assistance if you are limited in your ability to move quickly. Include notification of your local fire department in your plan. 5. Have fire extinguishers in key areas. 6. Never overload electrical circuits or use the cord to unplug – grasp the plug at the wall. 7. Do not run cords under rugs. 8. Keep combustibles and flammables away from heat or spark sources. 9. Dispose of combustibles properly. 10. Store oxygen upright, safely away from open flames or sources of spark or heat sources and in a well-ventilated area. Do not store under the bed or in the closet. 11. Do not smoke in your home if oxygen is in use. 12. Keep space heaters at least 3 feet from anything that can burn. 13.Do not use or apply any lubricant in the nose while using oxygen. What to Do in the Event of Fire • Contact your local fire department. • Leave the building immediately. • Do not use elevators in multi-story buildings. • Feel doors for warmth or look for smoke seeping under the door before opening. • If you see smoke or feel warmth, do not open the door and use another escape route. • If you cannot escape, stuff cloth around doors and cover vents to keep the smoke out. • If you must exit through smoke, CRAWL! That is where the air is. • If your clothing catches fire, STOP, DROP & ROLL or smother the fire with a blanket. 40 Safety Home safety measures Fall Prevention • Practice proper transfer techniques • Bed to chair, chair to bed, chair to toilet • Use proper ambulation techniques •Safety belt, walker, cane or crutch •Lift feet when walking • Wheelchair safety •Ramps – 12 ft. ramp for 1 ft. rise •Proper furniture placement •Lock wheels • Side rails up on hospital bed • Avoid or anchor throw rugs • Avoid walking hazards •Low-lying objects •Clutter • Have proper lighting • Avoid extension cords • Work on developing your balance • Avoid slippery surfaces • Be careful when using tranquilizers • Do exercises to strengthen legs • Do not over-wax floors, use non-skid wax • Wear properly fitting shoes • Wear shoes with rubber soles • Watch oxygen tubing • Watch thresholds at doorway • In bathroom •Have sufficient lighting •Use handrails near toilet and tub •Use skid-proof floor covering •Use bathtub mat •Use stable tub seat • On staircase •Use proper handrails •Have sufficient lighting •Label first and last step •Use non-skid treads on steps • Night light near bathroom • Watch telephone cords • Do not stretch cord across room – Do not tape down with heavy duty tape Safety Burn Prevention • Unplug appliances after use • Turn pot handles to back of stove • Do not smoke in bed • Turn off oven and stove burners • Label hot and cold faucets • Store flammables properly • Have fire extinguishers • Do not use lighted matches or lighters around suspected natural gas leaks • Do not use heating pads • Clearly mark controls on stove • Avoid exposed wiring • Report faulty wiring and outlets • Be very cautious around any open flame, heater or fireplace • Be aware that nylon catches fire very easily Poison Prevention • Label all poisons • Keep all substances in their original containers • Have Syrup of IPECAC on hand • Store cleaning agents away from food and medications Cold Weather Precautions • Have warm blankets • Wear warm housecoat • Avoid icy sidewalks and porch steps • Have easy access to thermostat • Wear warm socks • Cover head – you can lose up to 20% of body heat through your scalp Hot Weather Precautions • Drink plenty of cool, non-alcoholic fluids • Avoid strenuous and outdoor activities between 11 a.m. and 6 p.m. – this is the hottest time of day • Use a fan or air conditioner during temperatures above 80 degrees • If necessary, visit your local neighborhood cooling center for relief • Wear light (cotton) loose-fitting clothes • If you feel dizzy, weak, short of breath, confused, nauseous and/or have a headache, apply cool compress to forehead, drink cool fluids, rest, and if you don’t feel better, call hospice. 42 Safety Other • Mark glass doors with decals • Avoid reaching overhead, use lower shelves • Get up slowly to avoid dizziness • Avoid sharp-cornered furniture • Keep doors locked, ask visitors to identify themselves before you open the door. Open only if you know or are expecting that person • Install proper locks • Do not smoke if you have oxygen in the home • Obtain emergency response system • Be cautious with sharp objects • Tornado safety •Go to closet or bathroom, avoid windows •Wrap yourself in a blanket •Cover your head with a pillow Emergency Preparedness • In case of emergency, have these items handy •Flashlight •Portable radio •First aid kit •Fire extinguisher •Blankets •Extra clothing •Canned food (can opener) •Water •Medication supply •Pipe or crescent wrench •Batteries • Tune into the emergency information station in your area • Have an emergency plan for you and your family • Know how to operate back-up medical equipment 43 Safety Medication Policy and Safety Tips Once admitted to BJC Hospice, the case manager/RN will review with you the policy and procedure on medication administration and disposal of narcotic (pain) medications. During your stay with BJC Hospice, your nurse will review your clinical needs with your attending physician and hospice medical director to determine what medications will manage your symptoms and promote your comfort. The purpose of this review is to ensure your medications are correct and beneficial to you at this time in your disease process. Your comfort is our goal. During each visit, the hospice nurse will ensure that your medications are taken according to physician orders. Any changes in medications must be approved through your physician, in coordination with your hospice RN/case manager. Please notify hospice if you have any changes in your condition, need a refill on medication or have questions. Medication Safety Tips: • Know the drug name, dosage, instructions and reason you are taking each medication. • Know the side effects of your medications and when to report them to your physician or nurse. • Keep a current list of all medications, allergies and pharmacy phone number. • Take your medication(s) at the times and in the amounts prescribed by your physician. • Maintain a daily log of when you take your medication(s). • Do not stop taking your medication without talking to your hospice nurse first. • Inform your physician(s) and nurse of any over-the-counter medications that you are taking. (Example: aspirin, Tylenol, cold medications, vitamins, herbal supplements, etc.) • When a narcotic/controlled medication is discontinued, or after death, the unused medication should be destroyed in the presence of a witness, unless refused by family. • Do not save any medication(s). • Keep all your pain medicine in a secure and private location. • Keep all medications out of the reach of children. • Do not allow any family members to borrow or take your medication(s). • Medications must not be removed from the patient’s home by any hospice staff. 44 Safety Medication Disposal: • When destroying or throwing away medications, remove labels from bottles or black out with a marker. • Narcotic medications are disposed of by flushing down sink or toilet. Non-narcotic medications may be disposed of as outlined in the next section. Solid Medications and Liquid Medications: • Remove from the original container and put the contents into a hard plastic container, such as a laundry detergent bottle. • Liquefy solid medications by adding a small amount of water to dissolve the medicine. • Add a thickening material such as cat litter, flour, salt, charcoal or coffee grounds. Nontoxic powdered spice, such as turmeric or mustard, may be added to discourage wildlife or young children from trying to eat the resulting material. • Recap and seal the container with duct tape. • Place it in the trash just prior to pick-up. Blister Packages (foil-wrapped pill containers and patches) • Keep these items in their original packaging. • Wrap the pack with a thick tape, such as duct tape. • Place the pack into a hard plastic container, such as a laundry detergent bottle. • Seal the container and place in the trash just prior to pick-up. Safety precautions pertaining to children • Do not allow children to play on or around equipment or supplies. Equipment or supplies may cause serious injuries to children. • Supervise children at all times around medications, equipment and supplies. • Gently shake out sheets to find any medications or supplies that may have been overlooked. • Pay careful attention to the placement of any extension cords attached to equipment and the potential for tripping, strangulation and shock. 45 Safety Medications and children • All medications should be in child-resistant containers out of the reach of children. • Be aware of high-risk areas accessible to children, such as: •Bathrooms-vanity tops •Bedrooms’ bedside tables •Coffee or side tables •Kitchen counters •Refrigerator •Purses Equipment and children • Oxygen tanks – be sure that tank is upright and in designated holder • IV Pumps – be sure that pumps are stored in holders provided by the pharmacy. Assure that IV lines are secured. • Assure that other equipment is stored and out of reach of children, such as: • Beside commode/bedpan •Suction machine •CPAP/BIPAP machine •Walker/wheelchair Supplies and children Check that all supplies are out of the reach of children, such as: •Saline and Heparin flushes •Sharps containers •Needles •Scissors and sharp items •Alcohol wipes •Hand sanitizer •Wound care/dressing supplies/kits •Topical solutions/ointments/pastes 46 Safety Home infection control measures Handwashing • Wash hands thoroughly before and after all patient care, self care, meal preparation, and upon arrival and departure from patient home. Scrub hands for 15 seconds. Disposable Items/Equipment • Double bag all paper, plastic or non-reusable items in a waterproof bag. Fasten securely. Dispose of bag in trash receptacle. Examples of disposable items: •Paper cups •Dressings •Chemotherapy supplies •Urinary/Suction catheters •Mattress pad and tubing, etc. •Tissues •Plastic equipment •Commode pail • Wash hands after handling any type of disposable items/equipment. Non-Disposable Items/Equipment • Soiled laundry should be washed apart from other household laundry in hot, soapy water. Handle these items as little as possible to avoid spreading germs. Household bleach should be added if viral contamination is present. Examples of soiled items: •Towels •Laundry •Clothing • Equipment utilized by the patient should be cleaned daily. Small items (except thermometers) should be washed with hot, soapy water and dried with clean towels. Examples of Equipment: •Commodes •Mattresses •Walkers •Suction machines • Wheelchairs • Thermometers • Bath Seats • Oxygen Equipment 47 Safety • Thermometers should be wiped with alcohol after use. • Household cleaners such as Lysol or diluted bleach may be used to wipe off equipment. Follow equipment cleaning instructions for equipment and ask your nurse/therapist for clarification. • Liquids used for cleaning may be discarded in the toilet and the container cleaned with hot, soapy water and rinsed with boiling water and allowed to dry. • Wash hands after cleaning non-disposable items. Sharp Objects • Place used sharp objects directly into clean, rigid containers with re-sealable lids. Use coffee cans or rigid plastic containers. Never overfill these containers or recap needles once used. Seal containers with lids and tape securely. Dispose in trash receptacle • Examples of sharp objects: •Needles •Scissors •Staples •IV catheters •Syringes •Knives •Glass tubes or bottles •Lancets and needles Wash hands after disposing of sharp object container. Spills in the Home • Blood/body substance spills are cleaned by putting on gloves and wiping fluid with paper towels. Then use a cleaning solution of bleach and water (1 cup of bleach mixed in 10 cups of water, or 1 tsp. dry bleach mixed in 1/2 cup water) to wipe up area again. Double bag towels and dispose in trash receptacle. • Wash hands thoroughly after handling blood or body substance. Respiratory protection for patients, caregivers and visitors • Cover your mouth and nose with a tissue when you cough or sneeze. In an emergency, cough or sneeze into your upper sleeve, not your hand. • Use a tissue when wiping your nose. • Dispose of used tissue in the wastebasket after use. • Clean your hands after coughing, sneezing and disposing of tissue. Clean hands with an alcohol-based waterless hand rub or wash hands with soap and water. • You may be asked to place a mask over your mouth and nose if you have symptoms of a cold or a cough. 48 Section five Ideas for support 49 Ideas for support Activities to help your loved one feel comfortable as death approaches • Keep the patient warm using blankets on the patient’s body to prevent him or her from feeling cold. Do not use electric blankets. • See that the patient is in clean bedding and clean bedclothes so that he or she is in a pleasant atmosphere. • Elevate the head of the bed and turn the head slightly to one side with a soft, clean towel under the chin. • Continue to sit by the patient, maintaining a touch or holding the patient’s hand, even if he or she seems to not be aware of the contact. • Fill the environment with things the patient likes to see to make the atmosphere pleasant. • Consider playing music the patient likes. • Keep lights dim in the room when vision decreases. • Talk to your loved one frequently. Let the patient know that you are there and he or she is not alone. Even if someone can’t talk, the person can still hear. • Continue to give pain medication as instructed by the nurse. Even if the patient is in deep sleep, pain can still be present. • Change your loved one’s position, and massage the skin as often as possible. • Clean the patient’s mouth at least three times a day. It is important to keep the lips and mouth as moist as possible. • Clean the eyes with a clean, warm, moist washcloth. • If your loved one is choking or unable to swallow, do not give food, drink or medication by mouth. Ask your nurse for instructions. • Talk about both the good and difficult times. At the end of life, patients tend to ponder what their life meant, whom they have touched and what they have accomplished. Help your loved one meld the scenes together in an order that lets he or she know how meaningful he or she has been in this world. • Tell your loved one how much you love him or her and that you will miss him/ her. • As the last moments approach, give your loved one permission to go when he or she is ready. It has been found that the will to stay in this world for those we love is strong and may cause a great ambivalence at this time. “It will never be acceptable for someone that we know and love to die. We will always want them on earth with us. We do not have to tell our loved one it is “okay” for them to die. We can, however, say to them that we understand it is time for them to leave and they can go whenever they are ready.” Excerpt from Barbara Karne’s book, Final Act of Living 50 Ideas for support Nutrition and hydration “Months before death occurs from disease, a person’s eating habits change. .....They begin by not eating meat-beef, chicken, fish; then it is fruits and vegetable; then anything that requires energy to digest. After that, the most a person eats is ice cream, puddings, creamed soups, and lastly, all they will do is take sips of water. This is normal and natural, .......(yet) we (often) have so much difficulty with the concept ....If the body is preparing to die, it doesn’t want the food, it doesn’t want the grounding or energy that food brings. The body cuts back on its food intake. It is preparing to let go. .....It isn’t that the person doesn’t want to eat; they can’t eat. They want to eat for us, their loved ones. They see how important their eating is to us. We’ll hear ‘I can’t eat. I put the food in my mouth and it tastes like steel wool. I can’t eat.’ Unfortunately, a person often gets to the place where they are not taking in enough calories for maintenance and a feeding tube or gastrostomy tube is suggested. When a person has entered the process of releasing from their body and they are not taking enough calories for maintenance, they are weeks from death. When a body is weeks from death, nothing works right – every function is starting to shut down. It is not processing. When we feed a person artificially at the end of life, we often end up with more complications than benefits – diarrhea, constipation, aspiration, pneumonia. ...A person is (often) not taking enough fluids for hydration. This is generally the time intravenous fluids are suggested for hydration. Most people believe that dehydration creates a painful, suffering death. That belief is not true; it is a myth. If a person has begun the end of life process and they are not taking enough fluids for hydration, they are generally days from death. .... (Their) body is really not working properly. The kidneys are not performing normally, so the fluid that is being forced into the body by way of an IV is not being processed. The body becomes filled with fluid. It feels heavy; sometimes the fluid actually comes out of the tissues. That fluid, not being able to be released from the body, travels up into the lungs and the person drowns.” Excerpt from The Final Act of Living by Barbara Karne. Tube feedings It is BJC Hospice’s experience that tube feeding does not improve the patient’s quality of life and in fact can prolong the dying process. Slowing or stopping tube feedings eases discomfort because dehydration lessens consciousness, promotes sleepiness and diminishes pain. BJC Hospice does not recommend tube feedings for its patients after they enter hospice. The nurse will instruct the caregiver how to give feedings if the patient and family have selected this form of nutritional supplement. 51 Ideas for support Understanding pain Pain is our body’s way of telling us something is wrong. Long-lasting pain is different than ordinary pain. It can limit abilities, cause depression, and make everything harder to handle. Pain signals are sent through a complex system of nerves in your brain and spinal cord. Your system tries to stop these signals from reaching their destination by creating chemicals, called endorphins, that help block pain signals. Your body can produce endorphins through “natural” controls, such as thoughts and emotions, or in response to “outside” controls, such as medicine, exercise, relaxation, massage and heat and cold treatments. Symptoms accompanying pain might include nausea, headache, dizziness, weakness, drowsiness, constipation, diarrhea or perspiration. Side effects of pain medications can include nausea and drowsiness, which usually subsides after a few days, and constipation. Medications should be taken according to physician orders. Your condition may require a combination of two or more medications. Pain is easier to control when medications are given on a regularly scheduled basis. Tell the nurse when pain medications are not working so he or she can take necessary measures to have the medication increased or changed by the physician. Don’t hesitate to talk about your pain to those who can help you. No one else can measure the amount of pain you feel. You have the right to the best pain control you can get. It is important that you use your pain medication so you are comfortable and function to your full potential. Trying to “tough it out” may cause further health problems. Sometimes patients will deny feeling pain. Caregivers should look for these signs of discomfort which are either nonverbal or may seem mistakenly unrelated to pain: _ Grimacing _ Body stiffening upon touch _ Irritability _ Moaning _ Refusing to be mobile _ Withdrawal Go to next page for a scale to help describe pain. 52 Ideas for support Below is a scale to help describe pain: 10 9 8 7 6 5 4 3 2 1 0 53 Ideas for support What to expect in the final stages of life This information will help you know what to expect as the death of your loved one becomes more imminent. Not all symptoms will appear at the same time, and some may never appear at all. If you have any questions, your hospice nurse and physician can help clarify or address concerns. Further information can be found in the “Gone from My Sight” booklet in this packet. As death approaches, the following may occur: • Your loved one’s arms and legs may become cool to the touch, and you may notice the underside of the body becoming much darker. These symptoms are the result of blood circulation slowing down. Provide warm blankets if the patient requests them. • Your loved one will gradually spend more and more time sleeping. At times, he or she will be difficult to arouse. This is a result of a change in the body’s metabolism. • Your loved one may become increasingly confused about time, place, and the identity of close and familiar people. Again, this is the result of body metabolism changes. • The loss of control of urine or bowel movements is often not a problem until death becomes imminent. Your hospice nurse can help you prepare the bed linens to keep your loved one dry and prevent staining. • Oral secretions may become more profuse and collect in the back of the throat. You may have heard of this referred to as a “death rattle.” This symptom results from a decrease in the intake of fluids and the inability to cough up saliva. You may elevate the head of the bed, or elevate the head with pillows. If your loved one is able to swallow, you can offer ice chips to help relieve the feeling of dryness, or apply a cool, moist washcloth on the lips. • Clarity of hearing and vision will decrease slightly. Keep a light on. Your loved one will hear what is distinctly spoken to him or her. Sit at the head of the bed to converse, and do not speak in whispers. • You may notice your loved one becoming restless, pulling at bed linens or having visions of people or things which do not exist. These symptoms are the result of a decrease in oxygen to the brain, and a change in the body’s metabolism. Try to talk calmly to your loved one, and protect your loved one from falling or hurting him or herself. 54 Ideas for support • Your loved one will have a decreased need for food and drink. Offer only very small amounts of food and drink more frequently, perhaps 5 or 6 times a day. • During sleep, you will notice breathing patterns will change to an irregular pace during which there may be a 10-30 second period of no breathing. This is referred to as a period of “apnea.” This is common and indicates a decrease in circulation and a build-up of body waste. • If your loved one has a bladder catheter in place, you will notice that the amount of urine will decrease and that the color will darken as death approaches. Always check with your hospice nurse, however, as there may be a need to irrigate the catheter to prevent blockage. 55 Ideas for support How you will know that death has occurred • Consult your hospice nurse if you feel that death is imminent or has occurred. Signs of death include: • Loss of control of bowel and bladder • No response to shaking or shouting • Eyelids slightly open • Eyes fixed on a certain spot • Jaw relaxed and mouth slightly open • No heartbeat • No breathing. Even after breathing has ceased, your loved one could have an infrequent gasp of breath. Your hospice staff will help confirm that death has occurred and will handle calls to the Medical Examiner, the mortuary, and your doctor. Do not call the police or 911. The only contact you need to make is to call hospice, and we will send a staff member to the home. Your physical and emotional well-being is very important to us. Please remember that we are available to you at all times. 56 57 START DATE MEDICATION/PURPOSE DOSAGE TIMES Pharmacy _________________________________ Phone # ________________________ Name ____________________________________________________________________ SIDE EFFECTS Allergies: _______________________________________ _______________________________________ START DATE MEDICATION/PURPOSE DOSAGE TIMES SIDE EFFECTS 58 Notes 59 Notes BJC Hospice does not discriminate with respect to the admission of patients to home care and hospice programs based on race, color, sexual orientation and gender identification/expression, age, religion, ability to pay, national origin, disease (including communicable but not limited to HIV, MRSA, Hepatitis B) or disability and in accordance with state and federal laws. 60 HCS17801_3/14
