End of life and grief and bereavement are issues not easily discussed in the American culture. They are complex cultural issues, deeply private and unique to each person. This question and answer section highlights often asked, and often misunderstood questions regarding end of life and grief.
| Question: What is Hospice? |
Answer: Hospice is a philosopy of care. Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice involves an integrated team approach to care. The team is typically a physician, nurse, social worker, chaplain, certified nurse aids and volunteers. Each brings specialized training in medical care, pain management, and emotional and spiritual support tailored to the patient's needs and wishes. Support is provided to the patient's loved ones as well.
The focus of hospice relies on the belief that each of us has the right to die pain-free and with dignity, and that our loved ones will receive the necessary support to allow us to do so. The focus is on caring, not curing. Hospice care is most often provided in one's own home, but care is also available in freestanding hospices houses, some hospitals, some nursing homes and other long term care facilities. Hospice is available to all persons, all ages, religions and races.
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| Question: How does Hospice work? |
Answer: Hospice care is for anyone with a life-threatening 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 illness are eligible to receive hospice care. All hospices consider the patient and family together as the unit of care.
The majority of hospice patients are cared for in their own homes or the homes of a loved one. "Home" may be broadly construed to include services provided in nursing homes, hospitals, prisons, assisted living facilities and board and care facilities.
Typically a family member serves as the primary caregiver and, when appropriate, helps makes decisions for the terminally ill individual. 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 hoursa day, seven days a week. |
| Question: What services does the Hospice team provide? |
| Answer: Among its major responsibilites, the interdisciplinary team 1. manages the patient's pain and symtoms, 2. Assists the patient with the emotional and psychosocial and spiritual aspects of dying, 3. Provides needed medications and supplies and equipment to the patient, 4. Coaches the family and caregivers on how to care for the patient, 5. Delivers special services like speech and physical therapy when needed, 6. Makes short term inpatient care available when pain or symptoms become too difficult to manage at home, or the caregiver needs respite time, 7. Provides bereavement care and counsling to surviving family and friends. |
| Question: Is Hospice only for people with cancer? |
Answer: Although the majority of the patients who were admitted to hospice agencies in 2004 had conditions related to cancer, there were other frequent admission diagnoses. Those include: diseases of the circulatory system; infectious and parasitic diseases, which includes human immunodeficiency virus (HIV); diseases of the nervous system and sense organs, including Alzheimer's, Parkinson's, meningitis, etc.; and diseases of the respiratory system.
Hospice serves anyone with terminal illness, as determined by one's physician.
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| Question: Does the Hospice team provide around the clock care for my loved one? |
Answer: The Hospice team does not provide 24/7 care. The Hospice team augments care that is already available to the patient at home with family and friends.
The Hospice Team members alternate visits throughout a given week as the patient is cared for at home.
A primary caregiver who lives at home with the patient is a requirement in most cases for the Hospice agency to provide care.
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| Question: Who is on the Hospice team? |
Answer: The team typically consists of
1. The patient's personal physician,
2. The Hospice physician (or Medical Director),
3. Nurses,
4. Home Health Aides,
5. Social workers,
6. Clergy or counselors,
7. Trained volunteers,
8. Speech, physical and occupational therapists if needed. |
| Question: Does the physician decide when to refer a patient to a Hospice provider? |
| Answer: The role of the physician is to recommend care, whether hospice or traditional curative care. It is the patient's right and decision to determine when hospice is appropriate and which program suits his or her needs. Before entering a hospice, however, a physician must certify that a patient has been diagnosed with a terminal illness and has a life expectancy of six months or less. |
| Question: Will I have to pay for Hospice? |
Answer: Medicare pays the hospice provider for your hospice care. You will have to pay:
1. No more than $5 for each prescription drug and other similar products. The hospice provider can charge up to $5 per prescription for outpatient drugs or other products for pain relief and symptom control.
2. 5% of the Medicare payment amount for inpatient respite care. For example, if Medicare pays $100 per day for inpatient respite care, you will pay $5 per day. You can say in a Medicare approved hospital or nursing home up to five days each time you receive respite care. There is no limit to the number of times you can receive respite care. The amount you pay for respite care can change each year. |
| Question: Is Hospice expensive? |
Answer: Generally hospice costs less than care in hospitals, nursing homes, or other institutional settings for one basic reason: in those facilities a patient is charged each day for all general services such as food services and basic medical supplies. With hospice a patient pays only for the services he or she or the family cannot provide and that are not covered by insurance. In 1997 the charges per hospital day were estimated at $2,121; $454 in a skilled nursing facility. In 1997 hospice care cost approximately $108 per covered day of care. It is also estimated that Medicare's hospice program saves $1.68 for every dollar spent for Part A benefits in the last month of life.
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| Question: If I'm referred to Hospice can I keep my Medicare health plan? |
Answer: Yes. You will use your Medicare health plan (like the Original Medicare plan or a Medicare + Choice Plan) to receive care for any health porblems that aren't related to your terminal illness. You may be able to get this care from your doctor, who isn't part of the Hospice team, or from the Medical Director of the Hospice provider who is caring for you. When you use your Medicare health plan, you must pay the deductible and coinsurance amounts for the copayment.
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| Question: How many Medicare Hospices are there in the Santa Fe community? |
| Answer: Several Doorways member options are available; PMS Hospice Center, Odyssey Hospice and Ambercare Hospice. |
| Question: What is a health care directive? |
Answer: There are basically two types of documents that fall under the general heading of "health care directive." In the first document, commonly referred to as the "living will," you set forth directly to your family, friends and physicians you wishes for medical treatement should you become incapacitated and unable to express your wishes for yourself.
For example, in this document you state whether you want to be kept on life support, if two physicians have certified that you are in an irreversable coma or have a terminal illness. You may wish to discuss these and other healthcare issues and your choices with your doctor, and perhaps with your spiritual advisor. This will help you make an informed choice.
In the second document, commonly referred to as a "durable power of attorney for health care," you appoint an agent and an alternate agent, also known as a proxy, to make decisions for you concerning medical treatment and to advocate for your wishes when you are unable to do so.
You may empower your agent to make all health care decisions for you when you are incapacitated, including whether to withold or withdraw nutrition or hydration, top review your health records, to hire medical personnel to care for you, to choose your care facility or residence, etc.
Every state has enacted a law authorizing thses documents and setting forth the legal requirements; in some states these documents are combined into one document. Most states provide that anyone over 18 and of sound mind may execute the documents. |
| Question: Why should you execute these documents? |
Answer: First, these documents allow you to select the individuals you wish to act on your behalf. This becomes particularly important if you are in a committed relationship but are unmarried, since members of a partnership not legally recognized often are not permitted to act on behalf of one another without written authorization.
Second, and perhaps most important, these documents allow you to live your life to its end, in a way that is meaningful to you given your values and views on the degree to which available medical technology might be used to enhance your life, should your recovery not be possible.
By stating your wishes while you are still able, your family and friends will know your desires, and avoid confusion and conflict during a time of great stress. |
| Question: Who should you select as your agent? |
| Answer: Select a person for your agent who knows you well, who understands your philosophy, who will follow and advocate for your wishs, and who will be able to make difficult decisions about your care. Your should also select an alternate agent to assist you if your primary agent is unavailable. |
| Question: How do you document your wishes in writing? |
| Answer: Your healthcare directives must comply with your state's legal requirements with regard to who may execute a directive and the legal formalities, such as whether the document must be notarized or executed before witnesses. An attorney may draft the documents or you may be able to attain a form from a local hospital, local Medicare hospice, or in New Mexico, the State Aging and Long Term Care Department or another trusted source families with New Mexico's legal formalities. |
| Question: What should you do once you have executed your healthcare directives? |
| Answer: Discuss the directives and your wishes thoroughly with your designated agents. Explain your wishes to your family, close friends and physician. Be certain to give a copy of your healthcare directives to your agents and your physicians. You may wish to keep a card in your wallet stating that you have executed your healthcare directives. This card should provide the names of your agents and their telephone numbers in care of emergency. |
| Question: May you revoke your healthcare directives at a later date? |
| Answer: You may change or revoke your healthcare directives at any time. If you do, be certain to notify anyone who has a copy of the directive. It is wise to review your healthcare directives periodically to make certain they still reflect your wishes and your agents are still willing and available to assist you. |
| Question: What is a durable power of attorney for finances and should you have one? |
Answer: In a durable power of attorney for finances, your authorize someone you trust, referred to as your "Attorney in Fact," to step into your shoes and handle your finances when you are unable to do so. You may grant your Attorney in Fact authority to handle your financial affairs in as broad or narrow scope as you wish, depending on what you believe would be required, The powers you grant could include the authority to write checks, file your taxes, invest your money, collect money owed to you including government benefits, etc.
Every state has a law authorizing a durable power of attorney for finances and outlining the legal requirments for the documents. If you do not have this document and you become unable to take care of your financial affairs, your family or partner will need to file a conservatorship proceeding to have the court appoint someone to handle your financial affairs for you. This proceeding is costly and time consuming. |
