HTips for Physicians. ospice. Talking About. Talking About Hospice

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1 Hospice Care Hospice care is a compassionate method of caring for terminally ill people. Hospice is a medically directed, interdisciplinary team-managed program of services that focuses on the patient/family as the unit of care. Hospice care is palliative rather than curative, with an emphasis on pain and symptom control, so that a person may live the last days of life fully, with dignity and comfort, at home or in a home-like setting. It provides dignity and respect to the individuals in its program. It is offered to those who have a chronic and terminal illness or diagnosis and are in the final stages of their life. Hospice care is not intended for those whose prognosis is good or those who are still benefitting from medical intervention and treatment. However, many people don't consider hospice as early as it could be provided. They mistakenly believe receiving hospice means one's given up and has no hope. This is far from the truth, as hospice is there to simply provide a pain-free, comfortable high quality of life to those who otherwise might be in extreme pain, isolation and misery. Hospice care provides family-centered, compassionate and skilled treatment to people wanting to enjoy their life, not waste it. Because hospice is built on the foundation that death is the final stage in life, its philosophy is to aid patients live out their lives in an alert, comfortable, and pain-free way. Unlike other medical interventions, hospice puts the person first and their disease last. Care is determined according to wishes of the patient and his family. The focus progresses from fighting a lost battle with a terminal illness to finding the best quality of life possible until death. Hospice care is often available around the clock, 7 days a week; whether the patient is in his own home, a hospital, nursing home or private care facility. And regardless of where the patient receives the care, family members are encouraged to actively participate in the care and well-being of their loved one. Though hospice care is appropriate when medical interventions are no longer beneficial and the patient's life expectancy is 6 months or less, many people wait until they have suffered through weeks and months of pain and misery. Because they don't want to admit defeat or realize the fate of death, the average time of people receiving hospice is only days. With care aimed at relieving disease symptoms while providing social, emotional and spiritual support, an interdisciplinary team manages the hospice care. The team, providing support and relief, may include doctors, nurses, social workers, home health aides, clergy, volunteers, friends and family. The patient will be surrounded by people they love and others who have their best interests at heart. While in hospice care pain is treated, as well as the side-effects of the disease and medicine. The patient will be alert and comfortable; still able to appreciate and enjoy life, make important decisions and interact with those around them. Everyone involved will receive spiritual support custom to individual needs, education on the process of death and grieving, respite care if needed and family conferences. The patient will be supported through each day, cared for in a nurturing, life-celebrating manner, and treated as they were when they had perfect health. If someone is living with a terminal illness that no longer responds to medical interventions and the life expectancy is 6 months or less, this is a good time to consider hospice care. Not only will they learn how to manage the grief and fear death brings, they'll get support throughout the process, education on ways to cope and relief from debilitating symptoms that can be so limiting. Let hospice care help.

2 A PUBLICATION OF THE AMERICAN HOSPICE FOUNDATION Hospice challenges physicians to introduce hospice well before the brink of death and to make it a comfortable part of patient education. Patients can benefit from information about hospice even if they do not face a life- threatening illness. Before the stress of a medical crisis, early discussions about hospice can facilitate open communication, avoid late referrals, and provide patients a choice and a sense of control. For many people, acceptance of death is a step toward emotional and spiritual growth. Physicians can help patients make that step by discussing all options for care early in the progression of a terminal illness. While hospice care is most effective over a period of months, half of all hospice patients in the U.S. die within one month after en- rollment and 20 percent die within one week. During the last weeks or days, there may be time to control a patient s pain and stabilize symptoms, but there is little time or strength to address spiritual and emotional needs. On the other hand, an early refer- ral to hospice gives patients time to say goodbye and reduces the chance that the family s grief will be prolonged and complicated. Why Are Hospice Referrals So Late? Patients may be referred to hospice late or not at all because discussions about end-of-life care are difficult. Barriers to hospice referrals may include: Discomfort with death and grief Sense of failure about inability to cure Hesitation about prognosis Perception that hospice is only a last resort Concerns that patients will feel abandoned Uncertainty about hospice clinical services Financial concerns Doubts that hospice offers hope to patients and families Case management approval delays

3 Hospice IsComprehensive And Affordable Care Hospice includes medical care with an emphasis on pain management and symptom relief. Hospice teams of professionals and volunteers also address the emotional, social and spiritual needs of the patient and the whole family. Overseeing all patient care is the hospice medical director who can serve as the attending physician. The patient s own physician may also serve in this role, working with the hospice team and its plan of care. Medical Care Pain management is of particular concern for a patient with a life-threatening illness. Hospice staff are experts in state-ofthe-art pain treatments, helping patients feel comfortable with pain management options. If caregiving requires new skills, family members can count on the hospice staff for training and guidance. Most medical care for patient comfort can be provided at home. Recent technological advances allow for a wide variety of equipment to be installed in the home, thus reducing the need for hospitalization, except in the most complicated cases. In rare cases when symptoms cannot be controlled at home, inpatient hospice facilities are often available. Emotional and Spiritual Support The fear of death can be due to a fear of pain or abandonment. The hospice professional staff include bereavement and spiritual counselors who help patients and families come to terms with dying. They assist patients in finishing impor- tant tasks, saying their final goodbyes, healing broken family relationships, distributing precious belongings, and completing a spiritual journey. Unfinished business can make dying harder and grieving more difficult for those left behind. Hospices recognize that a person who comes to terms with dying has a more peaceful death, and that the family benefits from a less complicated grieving process. A source of relief and comfort for many hospice patients is the knowledge that their family will receive ongoing bereavement support. Practical Considerations The day-to-day chores of life can become overwhelming for family caregivers. The hospice staff can teach them to care for the dying person at home administer medications, operate equipment and coordinate services. Volunteers are integral members of the hospice staff, providing companionship and assistance with household activities. Financial Relief Financial worry can be a major burden for a patient facing a terminal illness. Most hospice patients are Medicare participants with ready access to a hospice benefit that minimizes out-ofpocket expenses in the last months of life. The Medicare Hospice Benefit covers prescribed medications, medical equipment and supplies, visits by medical and nursing professionals, home health aides, short-term inpatient care and bereavement support for the family after the patient has died. The Medicare Hospice Benefit also eliminates the burden of paperwork, as families are not required to submit claims or pay bills. Virtually all other medical plans include some level of hospice coverage. For patients without hospice insurance, financial accommodations are made based on ability to pay. Hospice Care Is Not Just For Cancer Patients Although most hospice care is provided to cancer patients, hospice is also for patients with HIV/AIDS; advanced respiratory, cardiac, liver and kidney diseases; Alzheimer s Disease; Parkinson s Disease; Multiple Sclerosis; or Amyotrophic Lateral Sclerosis (ALS). Many hospices serve children as well as adults, and most communities have hospices that specialize in pediatric care. T hrough my years as a hospice doctor, I have learned that dying does not have to be agonizing. When people are relatively comfortable and know that they are not going to be abandoned, they frequently find ways to strengthen bonds with people they love and to create moments of profound meaning in their final passage. Ira Byock, M.D.

4 Hospice care is designed for terminally ill persons in a variety of living situations. The vast majority of hospice care is provided in the home, where a patient is sur- rounded by family, friends and familiar objects. Patients benefit from having a primary caregiver living at home, and many hospices have innovative programs for persons who live alone, or with a frail spouse or partner. Hospice care is increasingly available to adult care residents, as cooperative relationships grow among hospices, nursing homes, and assisted living facilities. Hospice Care Is For Grieving People A key component of comprehensive hospice services, grief counseling is offered to all family members during the illness and for about a year after the death. Most hospices offer bereavement support groups which are open to the commu- nity, and the hospice bereavement team welcomes opportunities to work with schools, employers and religious organizations. Physicians can help patients recognize problems that may be related to unresolved grief. Common symptoms include apathy, fatigue, confusion or depression, withdrawal from family or friends, diminished job performance and loss of appetite. Grief can also be an underlying cause of alcohol or drug abuse. For children, grief may be a factor in poor school performance, behavioral problems and even serious depression. Local hospices can help with grief counseling services or re- ferrals to communitybased therapists with expertise in complicated grieving. When To Introduce Hospice Physicians know their patients best and can identify opportunities to introduce hospice as an option within the care continuum. The less urgent the occasion, the greater the opportunity for dialogue. Indeed, when its full benefits are highlight- ed, hospice can be discussed in a hopeful and constructive manner. Physicians interested in fully supporting patients in end-of life decisions can initiate discussions about hospice when: Describing the general philosophy of care Presenting a continuum of care after a patient s life-threatening diagnosis Discussing a life-threatening illness a family member is facing Distributing patient education materials Responding to grief-related problems in the family On each of these occasions, the discussion can take many directions. Below are suggestions for getting started: Describing the general philosophy of care: In our practice, we believe that patient comfort and quality of life are as impor- tant as curing a disease or prolonging life. When curative treatments no longer have the desired effect, we have found that hospice care is a good option because it offers patients an opportunity to stay at home and to make personal decisions about how to spend the time that remains. We work with local hospices that offer services, not only to people with a terminal illness, but also to families that need grief counseling. Most hospices extend their bereavement services to the whole community, so if there is a loss in your family elsewhere in the country, bereavement support is available to you right here at a local hospice.

5 Presenting a continuum of care after a patient s life-threatening diagnosis: We have a number of options to choose from. Chemotherapy may eradicate the cancer, so you might want to start there. Next we could try... You should also know about hospice, which cares for people at home if treatments don t help. Discussing a life-threatening illness a family member is facing: Have you considered hospice services? We think it s a good idea to explore all possibilities, so that when you are faced with a crisis, you aren t looking around frantically for vital information. Distributing patient education materials: Among the materials that you will receive are hospice brochures that describe avail- able services and helpful concepts about advance planning. These materials may help you make decisions about end-of-life care which you could share with your fam- ily. It is important that you inform at least one person about your wishes, in the event you cannot speak on your own behalf. Responding to grief-related problems in the family: Since there has been a recent death in the family, there are bound to be grieving adults and children who could use sup- port and information. We suggest call- ing the local hospice for resources available to all community members. The hospice bereavement staff may even be willing to come to the school (or the workplace) to consult with the teachers (or supervisors). Hospice has grief experts who can provide advice, support and helpful reading materials. In the End, It Comes Down To This... A sensitive presentation about hospice care offers patients maximum choice at important life stages. Deferring discussions about hospice may deprive patients and families of comprehensive care at home, emotional support, spiritual resolution and financial protection. Resources Representatives from your local hospice are willing to meet and discuss their particular services. Additional information about hospice is available from the following sources: The National Association for Home Care (NAHC) and the National Hospice Organization (NHO) both maintain locators on their Web sites, and respectively. The NHO also offers the hospice helpline at The American Hospice Foundat 1130 Connecticut Avenue, NW, 700, Washington, DC Tel: , fax: ahf@msn.com. Website: The Foundation has also published Hospice: Tips for Nurses; The Power of Grief: Responding to the Bereaved; Grief at School: A Guide for Teachers and Counselors; Grief at Work: A Guide for Employees and Managers; Grief and Faith: Spiritual Paths through Loss; Alzheimer s Disease and Hospice. American Hospice Foundation Published by The American Hospice Foundation 2120 L Street NW Suite 200 Washington, DC tel: 202/ fax: 202/ American Hospice Foundation