What is Hospice?
Hospice is considered to be the model for quality, compassionate care for individuals facing a life-limiting illness or injury. Hospice and palliative care involve a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes. Support is provided to the patients as well as their loved ones.
Hospice relies on the belief that each of us has the ability to spend our final moments pain-free and with dignity, and that our loved ones will receive the necessary support to allow us to do so. The cornerstone of hospice is caring, not curing, and in most cases, is provided in the comfort of your own home. The definition of home may be in facilities, hospitals, nursing homes, assisted living facilities, private residences, and foster homes. Eligible individuals may be someone of any age, religion and race experiencing a life limiting diagnosis/condition.
Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations.
How Does Hospice Work?
Hospice care is for any person who has a life-limiting or terminal illness. Most reimbursement sources require a prognosis of six months or less if the illness runs its normal course. Patients with both cancer and non-cancer illnesses are eligible to receive hospice care. All hospices consider the needs of both the patient and family when providing hospice services.
“Home” is where the patient resides whether at home, a nursing or assisted living facility or foster/personal care home. The majority of hospice patients are cared for in their own homes or the homes of a loved one.
Typically, a family member serves as the primary caregiver and when appropriate, helps make decisions for the patient. Members of the hospice staff make regular visits to assess the patient and provide additional care or other services. Hospice staff is on-call, 24 hours a day, seven days a week.
What to Expect?
When a referral is made to hospice, a team comprised of a Registered Nurse, Social Worker, Chaplain, Nurse Practitioner, Dietician, Home Health Aide, Community Liaison, and Patient Representative will make a visit to where the patient resides, whether at home, in a nursing facility, assisted living center or hospital room. This meeting will include the patient and family during which our staff will explain hospice services, work with the family in developing a plan of care, and get all of the necessary consents for hospice services.
A referral can be made by a physician, hospital case manager, nursing or assisted living facility, foster home or the patient and family. Once this order to assess and admit has been received, we will work quickly to admit and bring our hospice care team to your aide.
Who is the Hospice Team?
Hospice care is a family-centered approach that includes, at a minimum, a team of doctors, nurses, hospice aides, social workers, spiritual counselors, and trained volunteers. They work together focusing on the patient’s needs: physical, psychological and spiritual. The goal is to help keep the patient as pain-free as possible, with loved ones nearby throughout the course of care. The hospice team develops a care plan that meets each patient's individual needs for pain management and symptom control.
Though the Hospice Medical Director becomes the primary physician responsible for the plan of care, we work closely with the patient’s physician to be an active member of the care team. Both the patient's physician and the hospice medical director may work together to coordinate the patient's medical care, especially when symptoms are difficult to manage. The hospice medical director is always available to answer questions you or the patient may have regarding hospice medical care.
Hospice care is managed by an Interdisciplinary Team of professionals that will tailor a plan specific to the patient’s goals for comfort and care:
•Hospice physician (or Medical Director)
•The patients personal physician
•Clergy or other counselors
•Speech, physical, and occupational therapists if needed
What service does the Hospice Team provide?
Among its major responsibilities, the interdisciplinary hospice team:
•Manages the patient’s pain and symptoms
•Provides needed medications, medical supplies, and equipment related to the hospice diagnosis
•Educates the family on how to care for the patient
•Assists the patient with the emotional, psycho-social, and spiritual aspects of end of life.
•Delivers special services like therapy (speech, physical, and occupational), dietician, nursing, wound care, and many other treatments when needed
•Makes short-term inpatient care available when pain or symptoms become too difficult to manage at home, or the caregiver needs respite time
•Provides bereavement care and counseling to surviving family and friends as requested
In most cases, family members or loved ones are the patient's primary caregivers. Additionally, hospice recognizes that loved ones have their own special needs for support. As a relationship with the hospice begins, hospice staff will want to know about the primary caregiver's priorities. They will also want to know how best to support the patient and family during this time. Support can take many different forms, including visits with the patient and family members; telephone calls to loved ones, including family members who live at a distance, about the patient's condition; and the provision of volunteers to assist with patient and family needs.
Counseling services for the patient and loved ones are an important part of hospice care. After the patient's passing, bereavement support is offered to families for at least one year. These services are also tailored specifically to your level of need and can take a variety of forms, including telephone calls, visits, and written materials about grieving and support groups. Individual counseling may be offered by the hospice or the hospice may make a referral to a community resource.
Visit the Bereavement Support page for more information.
Role of the Family
How Will I Be Involved In Hospice For My Loved One?
As you may have experienced, caring for a family member or friend is not easy, nor is it something most of us are prepared to do. Like most people, you have probably had questions about your family member or friend’s illness or condition, and have spent time finding answers to those questions. Now that you have learned about the basics of care-giving, and better understand how to provide care, there may still be times when you feel overwhelmed or unable to care for your family member’s or friend’s needs. This information will give you education and practical tips for managing the stress of being a caregiver by attending to your personal needs. Though they may seem selfish, these ideas will help you continue to provide care for as long as your family member or friend requires it.
Caregivers of the chronically ill, elderly, or those with disabilities are generous, and compassionate individuals. They care for family members or friends in the familiar surroundings of their own home or community. These caregivers are “on call” 24-hours a day, 7 days a week because they want to see their family member or friends remain in the comfort and security of their own environment. At some point, even the caregiver needs a break from providing care to their loved ones. Hospice makes respite services available allowing the caregivers to have time for self healing/recuperation.
As caregivers, we sometimes become so involved in the day-to-day efforts to keep things going that we may forget to let others know we need additional assistance with providing care, or just need a break from the routine of caring for someone.
Some ways to make your needs known include:
Work Options. If you are a working caregiver, it is important to discuss your needs with your employer. Telecommuting, flextime, job sharing or rearranging your schedule can help to minimize stress. Increasingly, companies are offering resource materials, counseling, and training programs to help caregivers.
Involve Older Children. Older children living at home may be able to assist you and/or your older family member. Such responsibility, provided it is not overly burdensome, can help young people become more empathetic, responsible, and self-confident and give you needed support.
Ask Others to Help. You can and should ask other family members to share in care-giving.
A family conference can help sort out everyone’s tasks and schedules. Friends and neighbors also may be willing to provide transportation, respite care, help with shopping, household chores, or repairs. Volunteer services are also available as needed.
Create a list of things that need to be done, such as grocery shopping, laundry, errands, lawn care, housecleaning, or spending time with the care recipient, and put it in a clearly visible place. If someone says, “let me know if there is anything I can do to help” you can point to the list. Take a break from care-giving. Even if it is only 15 or 20 minutes a day, make sure you do something just for you.
Exercise. Most experts recommend at least 30 minutes, three times a week. This is a great way to take a break, decrease stress and enhance your energy.
Eat healthy. To help give you more energy, avoid foods that are high in:
•Salts, chemical preservatives and additives
Attend a support group for caregivers. Check with your doctor, Generations Hospice Care, or the local area agency on aging for groups that meet for this purpose.
Seek professional help. Many caregivers have times when they are lonely, anxious, guilty, angry, scared, frustrated, confused, lost, and tired. If you feel like these feelings are overwhelming you, call your doctor, hospice, or another community resource.
The Patient's Choice
Communicating End Of Life Wishes:
Decisions about end-of-life care are deeply personal and are based on your values and beliefs. It is impossible to foresee every circumstance or illness while you still have the ability to make informed decisions about your care. Therefore, it is essential to think in general about what is important to you. Conversations that focus on your needs and why you are making them will relieve your loved ones and health care providers of the need to guess what you would want when it comes to making end of life decisions.
It's all about talking. Talking with your loved ones about your health care preferences; talking with your doctor about your options so that you can make informed decisions; and talking with your health care agent so your wishes are honored if you cannot make decisions yourself. Talking before a crisis can help you and your loved ones prepare for difficult decisions related to health care at the end of life.
How to talk with your loved ones about end-of-life care issues:
When discussing your end-of-life wishes with loved ones, you should consider:
•Overall attitude toward life, including the activities you enjoy and situations you fear
•Perception about independence and control, and how you feel about losing them
•Religious or spiritual beliefs and moral convictions, and how they affect your attitude towards serious illness
•Attitude toward health, illness, death, and dying
•Feelings toward doctors and other caregivers
Remember, it's up to you to take the initiative and express your wishes. Your family or loved ones are not likely to raise the issue for you. Talking about end-of-life issues can be difficult for anyone. To ensure that your end-of-life wishes are honored, it is essential to discuss your wishes with your loved ones now – before a crisis develops.
You may want to use the following occasions as opportunities for having this conversation:
•Around significant life events, such as marriage, birth of a child, death of a loved one, and retirement
•While you are drawing up your will or doing other estate and financial planning
•Before and after annual medical checkups
•During informal family gatherings
Ask Your Loved Ones. An important part of communicating your end-of-life wishes is discussing with your loved ones what you may need from them if you are faced with a life-limiting illness.
Some questions that you may want to ask are:
•Will you seek out information about my disease, advance directives, your roles as caregivers, and what to expect as I get sicker and near the end of life?
•Will you be able to respect my wishes, even if they are different from what they were at one time, and if you don’t agree with my decisions?
•If I cannot communicate for myself, will you advocate for me to make sure that what I want
is done, even if you would not make the same choices yourself?
•Will you stay with me even if the going gets rough?
How to talk with your health care agent about your end-of-life care wishes:
Your health care agent needs to know about the quality of life that is important to you and when and how aggressively you would want medical treatments provided. Talking to your agent means discussing values and quality-of-life issues as well as treatments and medical situations. Situations can occur that you might not anticipate, your agent may need to base a decision on what he or she knows about your values and your views of what makes life worth living. These are not simple questions, and your views change over time. For this reason, you need to talk to your agent in depth and often.
What kind of treatment would you want if you were in a state of prolonged unconsciousness and were not expected to recover?
•Would you want life support or would you rather receive palliative (comfort) care only?
•What are your views about artificial nutrition and hydration (tube feeding)?
•Do you want to receive these types of treatment regardless of your medical condition? On a trial basis? Never?
•If your heart stopped, under what circumstances would you want doctors to use CPR to resuscitate you?
When is the right time to talk with your doctor about your end-of-life care wishes?
Do not wait until a crisis occurs before discussing concerns about end-of-life treatments with your doctor. Chances are that he or she is waiting for you to start the conversation.
When you discuss your concerns and choices:
•Let your doctor know that you are completing advance directives.
•Ask your doctor to explain treatments and procedures that may seem confusing before you complete your directives.
•Talk about pain management options.
•Make sure your doctor knows the quality of life that is important to you.
•Make sure your doctor is willing to follow your directives. The law does not force physicians to follow directives if they disagree with your wishes for moral or ethical reasons.
•Give your doctor a copy of your completed directives. Make sure your doctor knows the name and telephone number of your appointed health care agent.
•Assure your doctor that your family and your appointed health care agent know your wishes.
You may ask your doctor specifically:
•Will you talk openly and candidly with me and my family about my illness?
•What will you do if I have a lot of pain or other uncomfortable symptoms?
•How will you help us find excellent professionals with special training when we need them (e.g., medical, surgical and palliative care specialists, spiritual, social workers, etc.)?
•Will you let me know when treatment stops working so that my family and I can make appropriate decisions?
•Will you support me in getting hospice care?
•Will you still be available to me even when I'm sick and close to the end of my life?
•Will you visit with my family and help them with their spiritual concerns about my illness?
•Will you just sit and be with me, even if I don't want to talk?
Caregivers may require a period of respite on occasion. Respite provides informal caregivers - usually family member or friends - a break from their daily responsibilities. Respite can cover a wide range of services based upon the unique needs of the caregiver.
•A short-term stay in a hospice approved nursing facility for the patient allowing the family member private time to recover from providing care.
•During respite time the hospice agency will continue to provide all the services the patient is receiving while in their own private residence.
The enactment of the Older Americans Act Amendments of 2000 (Public Law 106-501) established the National Family Caregiver Support Program. Funding for this program allows states to work in partnership with area agencies on aging and local and community service providers to provide systems of support for family caregivers. A specific component of these systems is respite.
For the caregiver, personal respite varies as much as the individual and could be, for example:
•Giving the caregiver a short break for a doctor’s appointment or to go shopping
•Allowing the caregiver the opportunity to nap, bathe, or otherwise rejuvenate
•A break to attend a church service or see a movie
•Taking a much-needed vacation
•Pampering oneself with a hair appointment or manicure
•Simply visiting friends or other family members
However you choose to take a break, make sure you do it often enough to maintain a healthy balance between care-giving and your personal needs.
Paying for Hospice
The patient provides informed consent to be admitted to hospice.
General guidelines for admission for hospice services include:
•A person with a serious illness whose prognosis may be six months or less, if the disease runs its normal course as determined by the medical judgment of the person’s primary physician
•A person who, along with his/her physician, desires palliative care intended to relieve suffering and the symptoms accompanying the disease process
•A primary physician consents to hospice care for him/her. If the patient has no attending physician the medical director may serve as the physician.
•Patient and/or family agree not to treat terminal illness
Criteria for Admission and Guidelines for Determining Prognosis
Generations determines appropriateness for hospice care for cancer and non-cancer diagnosis by using Medicare guidelines. Non-cancer diagnosis include End Stage Dementia, End Stage Renal Disease, End Stage Cardiac Disease, End Stage Pulmonary Disease, End Stage Liver Disease, HIV Disease, Stroke and Coma, Failure to thrive and Amyotrophic Lateral Sclerosis.
In addition to meeting other disease specific criteria, Hospice patients may also exhibit the following in the past 3 to 6 months:
•Decline/Decrease in Activities of Daily Living (ADL)
•Weight loss or decreased appetite
•Decline/decrease in cognitive abilities
•Observable changes in physical condition
•Lack of response to treatment and worsening of symptoms of a chronic underlying disease
Hospice care is covered under Medicare Part A (Hospital Insurance). You are eligible for Medicare hospice benefits when you meet the following conditions:
•You are eligible for Medicare Part A
•Your doctor and the hospice medical director certify that you are terminally ill with a prognosis of six months or less if the disease runs its normal course.
•You sign an election of benefits form choosing hospice care, and covered benefits •Medicare will still pay for covered benefits for any health problems that are not related to your terminal illness.
Hospice care is covered under Medicare, Medicaid, Ameri Group/Amerivantage, Care Improvement Plus, Molina, Tricare For Life, Veteran Affairs, Blue Cross Blue Shield (HMO, PPO, Essentials, and Blue Advantage), Superior, United and other managed care organizations.