Hospice Care - Dallas/Ft. Worth, TX

Hospice Care - Dallas/Ft. Worth

Why hospice care exists.

We could offer a multitude of ideas in an attempt to explain the reasons for the rise and growth of the hospice concept in the United States and around the world. However, we think the words of one current hospice volunteer speak far more eloquently about the reasons and need for this unique and invaluable service.

"The greatest fear of those who are terminally
ill is not death and pain, but the fear of being
left alone, of dying without anyone by their side. 

Hospice provides clients and their loved ones the
assurance that they will not be abandoned, but attended
with love and care when they need it the most." 

What is hospice?

Historically, hospice was a concept rooted in the centuries-old idea of offering a place of shelter and rest, or "hospitality", to weary and sick travelers who were on long or difficult journeys.  Hospices became widespread in medieval Europe with over 750 such institutions in existence in England by the 13th century.   

Dame Cicely Saunders founded the first modern hospice in London in 1967.   She was the first person to apply the term "hospice" to the specialized care provided for terminally ill clients.

Today, hospice is the term used for an approach to healthcare that is specifically designed to support the physical, emotional and spiritual needs of those who have life-limiting illnesses or conditions.  Hospice care provides humane, compassionate care and support for those in the last stage of life so they may live their lives as fully and comfortably as possible.

Hospice is a physician-directed, nurse-coordinated, interdisciplinary approach to client care that is available on a 7/24/365 basis.

Hospice affirms life and regards dying as a normal process. It neither hastens nor postpones death.

The goal of hospice is to allow the dying process to unfold with a minimum of discomfort and to maintain client dignity and quality of life to the end.  

Hospice is a concept of care, not a specific place of care. Within this concept, the primary location for hospice care is normally the home setting, since the client feels the greatest level of security and comfort in his/her own familiar environment. However, hospice care also can be provided in other locations where the client may be residing, such as in residential care homes, nursing homes or other long-term care facilities.

Hospice provides a physician-directed, nurse-coordinated, interdisciplinary team approach to personal care.  The team, which also includes a social worker, chaplain and home health aide, provides personalized training and counseling services with a caring, compassionate attitude.  With this approach to care, the client, caregivers and family are able to obtain the necessary information and preparation for death that is satisfactory to them. They are then better prepared for the reality of the illness and are able to face the last stages of life more comfortably and confidently.

Daily primary care is provided by family members or loved ones.  The hospice team is available twenty-four hours a day, seven days a week and 365 days a year to provide training, counseling and hands-on care when appropriate.

Hospice emphasizes palliative care (i.e., relief of pain and uncomfortable symptoms) rather than curative treatment...and quality, rather than quantity, of life.

Hospice also provides emotional, non-denominational spiritual and practical support based on the wishes and needs of the client, caregivers and family. Hospice recognizes that every person's experience will be different and the hospice team, in association with the client's primary physician, creates a Plan of Care customized for the individual needs and wishes of each client.  Caregivers and family are also included in this Plan of Care.

The key components of hospice care include:

• respect for the worth and dignity of each individual
• dedication and commitment to the highest quality compassionate care
• neither the hastening nor the postponing of death
• quality of life as opposed to the length of life
• treatment of the client, rather than the disease
• alleviation of pain rather than curative treatment
• client care training and counseling support for the client, caregiver and family
• hands-on care by the Registered Nurse and Certified Nursing Assistant when appropriate
• assistance from the interdisciplinary team on a 24/7/365 basis.
• bereavement support for families and loved ones after a loss

How hospice care works.

When a client with a life-limiting illness or condition decides that curative measures are no longer appropriate, effective or desirable, hospice care becomes a compassionate, dignified and beneficial option for end-of-life care.

When possible, the client receives care in his or her own home. Family and friends function as the client’s primary caregivers. In association with the client’s primary physician and the hospice Medical Director, the hospice agency provides a specially trained, highly skilled and very experienced team of healthcare professionals to assist the client, caregivers and family. Each team member visits our clients on a regular basis and guides them, their caregivers and families through the process of the terminal illness or condition.

The client’s primary physician continues in that function according to the wishes of the client. The primary physician continues to provide care for non-hospice related conditions and also coordinates with the hospice Medical Director and hospice team on hospice care issues.

The hospice Medical Director follows each client’s care closely and is kept informed about the patent’s current condition by the clinical team members.  The Medical Director assists in the development of the client’s plan of care and approves any changes made to the plan.  The Medical Director also prescribes the appropriate medications used for the client’s palliative care for pain control and psychological well-being.

A nurse, acting as the client’s case manager, makes regularly scheduled, personal visits to the client to provide expert pain management and symptom control care.  Case managers also provide training to the primary caregivers so they can care for the client properly and safely. During the time the client is under hospice care, the case manager keeps the primary physician, the hospice Medical Director and the family informed regarding the client’s condition.

A social worker provides assistance with practical and financial concerns as well as emotional support, counseling and bereavement follow-up.  The social worker evaluates the need for volunteers and other support services needed by the family and facilitates communication between the family and community agencies. 

A chaplain provides non-denominational spiritual support to clients and families, often serving as a liaison between them and their religious community. The chaplain offers support services ranging from crisis help to private and group grief support.  The chaplain often assists with memorial services and funeral arrangements.

A home health aide provides personal care and assistance with activities of daily living, feeding and bathing and hands-on care. The home health aide also performs limited household services to maintain a safe and sanitary environment in the areas of the home used by the client.

Trained volunteers are available to provide a number of important services. Volunteers offer direct client support, companionship and practical, caring help. Volunteers can assist the primary caregivers by sitting with the client to provide the caregivers respite from the sometimes overwhelming task of providing around the clock care for a loved one.

Hospice care services are available on a 24/7/365 basis.  The hospice agency stands side-by-side with its clients and their families during their entire stay on hospice care.

Specifically, hospice provides:

• prescription medications for pain and symptom control
• medical equipment and supplies necessary to promote and maintain client comfort
• medical care focused on maintaining client comfort
• assistance with personal care and activities of daily living
• coordination of community resources to assist the client and family with non-medical concerns
• assistance by trained volunteers to provide companionship, emotional support and help as possible in other ways as requested by the client and family
• help in coping with spiritual questions and concerns at the end of life, either directly by the team or by coordinating services with the client’s and family’s spiritual advisors

The hospice agency also remains available to the surviving family for bereavement support. Medicare requires that hospice agencies provide support for at least one year after the death of the client.

What is palliative care?

The World Health Organization has defined palliative care as "the active total care of clients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for clients and their families."

Hospice palliative care is designed to support any other treatment the clients may receive by helping them live as comfortably as possible. It strives to help clients, caregivers and families manage the challenges they face during hospice care. All aspects of care are provided in a manner that is sensitive to the client’s personal, cultural and religious values, including his/her beliefs and practices and preparedness to deal with the dying process.

When is palliative care needed?

Palliative care can help a client at any stage of a life-limiting illness or condition.  Although it is best introduced early in the plan of care, it can be received at any time.  A client may need palliative care and support if he or she:

• is suffering from symptoms that are hard to treat such as pain, nausea, fatigue, depression, anxiety
• needs help understanding treatment choices
• wants support when making difficult medical decisions

Palliative care has a number of benefits:

• vigorous treatment of pain, symptoms such as nausea and fatigue, depression and anxiety throughout the illness
• keeping clients as comfortable and active as possible so they can pursue meaningful daily activities in the manner they desire
• emotional support for the client, caregivers and family when needed

The hospice team develops a plan of care that the client wishes to receive and ensures that the medical team coordinates with each other to provide that care. Team members also counsel clients, caregivers and family members when they are faced with difficult medical decisions or need emotional support.

How do I choose a hospice agency? 

Very simply, you choose a hospice agency in the same manner and with the same care that you would choose any product or service that will have a major influence on your life or the life of a loved one.

First:

Conduct careful and detailed research on your local hospice agencies.  The internet is a good source of information about hospice agencies, since most have a website that describes both their operation and their philosophy of care. 

You can also go here.  The Texas Department of Aging and Disability Services (DADS) offers information on this wonderful website to help you evaluate the quality of long term care service providers, including hospice agencies, nursing homes and residential care homes.  Note that you can review facility ratings, consumer complaints and discrepancies that State inspectors have recorded over the past several years for each facility or organization. 

Friends and associates can be valuable sources of information as well since, in many cases, they have had personal experience with hospice agencies or know others who have.  Your physician and your church will also have information on local hospice agencies. 

Please bear in mind that all hospice agencies in Texas must be licensed by the state.  State licensing, and the licensing inspections (or "surveys"), are conducted in cooperation with Medicare.  For this reason, the state licensing requirements follow the Medicare hospice standards ("Conditions of Participation") very closely.  In other words, the state’s licensing standards for hospice agencies are essentially the same as the Medicare Conditions of Operation.

According to state and Medicare requirements, all hospice agencies must provide the same services.  For this reason, your research must be more detailed, so you understand the personalities and cultures of the hospice agencies you consider. 

Second:

Talk with the admissions coordinator at each of the hospice agencies you are considering.  At a minimum, the questions you should ask include: 

a. Are you state licensed and Medicare certified (if the client will be using the Medicare Part A benefits)? 

As mentioned above, all hospice agencies in Texas must be licensed by the state.  If an agency offers services to Medicare clients, the agency must also be certified by Medicare.

b. Will the agency assign a specific case manager, social worker, chaplain and home health aide to the client or will the agency rotate its staff members based on the agency’s convenience for staff scheduling?

Preferred hospice agencies will assign specific professionals to each client.  The agency will not change staff members, if it can possibly avoid doing so, unless the client or client’s representative asks the agency to make a staffing change. 

c. Can I interview the specific staff members who will be caring for the client?

This is an extremely important step in your research.  You should become very knowledgeable and comfortable with the specific hospice staff members who will be coming to the home to provide care.  It is in your, and the client’s, best interests to know the people you will be working with during this critical time in the client’s life.  Preferred hospice agencies will be happy to allow you to do this. 

d. Can you provide references from caregivers or family members who have worked with your agency and these specific staff members?

Some hospices will suggest that the privacy provisions of the HIPAA Act prevent them from doing this.  Preferred hospices will be happy to provide this information, since they will have many families who have asked to be used as references for future clients.

e. Do you ever charge Medicare clients directly for any care, services, supplies, equipment, or prescription drugs that you provide?

Medicare allows hospice agencies to charge a 5% co-pay for each prescription provided to the client.  However, preferred hospice agencies will not charge the client for this and will NEVER charge Medicare Part A beneficiaries for this co-pay or any other item or service they provide.

f. Will my prescriptions, supplies and equipment be delivered to my home?  Will there be any charge for delivery?

Preferred hospices will include home delivery service at no charge.

g. If I have questions or concerns that the case manager cannot answer, who is the agency point of contact (name and phone number) that I can talk to so I can resolve my concerns?

Preferred hospices will be happy to provide this information to you. 

 Third:

After you choose a hospice agency, it is very important that you monitor the services provided by the agency to ensure that the client continues to receive the highest level of respectful, compassionate and quality care that he or she deserves.  Never hesitate to ask questions of any staff member or your contact at the agency when something is not clear to you or you have concerns about client care.  Preferred hospices will always provide prompt, courteous answers to your questions.

Finally: 

An important concept to understand is that the client is NEVER required or forced to remain with the first hospice you choose.  If for some reason you decide that your choice of hospice agencies is no longer in the best interests of the client, the client may transfer AT ANY TIME to another hospice agency once per benefit period without loss of Medicare Hospice Benefits.  Most private insurers have the same type of policy.

Who is eligible for hospice care?

A common misconception about hospice is that it is a service provided only to cancer clients. The fact is that hospice agencies provide care to clients with any end stage diagnosis. These may include, but are not limited to:

• Metastatic Malignancies
• Heart Disease
• Kidney Disease
• Liver Disease
• Lung Disease
• Stroke and/or Coma
• AIDS
• Neurological Diseases (Alzheimer's, Parkinson's, Dementia, etc.)
• Lou Gehrig's Disease (ALS)
• Failure of Multiple Organ Systems
• Failure to Thrive
• Senescence (the physical and mental conditions associated with advancing age)

Is it true that you must have only six months to live to be eligible for the Medicare Hospice Benefit?

Another common, and unfortunate, misconception about hospice is that the use of hospice care somehow guarantees the client has less than six months to live.  Medicare defines the hospice standards that are used by Medicare hospice providers, Texas hospice providers and most private insurance companies.   Medicare has provided the following explanation and clarification regarding the hospice benefit eligibility guidelines.

"Generally speaking, the hospice benefit is intended primarily for use by clients whose prognosis is terminal, with six months or less life expectancy.  [However], the Medicare program recognizes that terminal illnesses do not have entirely predictable courses."

"Recognizing that prognoses can be unpredictable and may change, Medicare’s benefit is not limited in terms of time.  Hospice care is available as long as the client’s prognosis meets the law’s six month test.  This test is a general one……based on the [attending] physician’s and/or Medical Director’s clinical judgment regarding the normal course of the individual’s illness.  Medicare recognizes that making medical prognostications of life expectancy is not always an exact science."

Under this philosophy, Medicare has specified a procedure for certification and periodic recertification of the client’s eligibility for care under the Medicare Hospice Benefit. This procedure provides two 90-day eligibility certification periods followed by an UNLIMITED number of 60-day eligibility certification periods.  As long as the client, in the judgment of the primary physician and hospice Medical Director, continues to meet the six month criteria during each certification period, the client can continue to receive care under the Medicare Hospice Benefit.

When does hospice care become appropriate?

Hospice care becomes appropriate when an individual has a life-limiting illness or condition. The client's primary physician and the hospice Medical Director will work together to make this medical determination. The client and family then determine whether the client wishes to enter the hospice care program.

The following guidelines are used to assist the physician and hospice Medical Director in making a judgment regarding an individual's eligibility for hospice care.

The client has a declining functional status as determined by either:

• a Karnofsky Performance Status of 50% or less. (The Karnofsky Performance Status is an evaluation that assesses a person's ability to function independently.)
• dependence in 3 out of 6 Activities of Daily Living
• frequent hospitalizations
• frequent trips to the Emergency Room
• weight loss of 10% or more in the last 4 to 6 months
• serum Albumin less than 2.5 gm / dl. (Albumin is a component of protein and makes up one half of plasma protein.)
• client and family have elected palliative care rather than curative treatment

The following brief questionnaire may help you determine whether hospice care is right for you or your loved one.

Informal Hospice Eligibility Questionnaire

You or your loved one may be eligible for hospice care if you check 4 or more statements. However, your primary physician and the hospice Medical Director will make the final decision regarding eligibility.

Please check the following statements as they apply to you or your loved one to see if hospice care may be appropriate.

I have started feeling more tired and weak.
I experience shortness of breath, even when resting.
I spend most of the day in bed or in a chair.
I have noticed an increased weight loss in the past six months.
I make frequent phone calls to my physician.
I take medications to lessen physical pain.
I have fallen several times in the past six months.
I have made frequent trips to the emergency room in the past six months.
I need help from others with important daily activities.
         (bathing, dressing, eating, cooking, walking, getting out of bed)
My doctor has told me my life expectancy is limited.

If you have checked 4 or more items on the questionnaire, you may want to begin your research into hospice care by seeking the opinion and advice of your (or the affected individual's) primary physician. If you do not have a primary physician, a hospice agency can refer you to its Medical Director who can answer your questions.

Hospice Information Resources

There is an almost overwhelming amount of information available about hospice, hospice care and palliative care on the web, in books and in periodicals.

The following links will help to make your search for information easier and less time consuming. Each website listed may be viewed free of charge.

A brief summary is included for each link so that you may focus your search on your specific areas of interest. Each of these links is an excellent information source that will help you better understand hospice, hospice care, palliative care and other end of life issues.

Hospice Care Information Sources

Texas Department of Aging and Disability Services

The Texas Department of Aging and Disability Services (DADS) offers information on this wonderful website to help you evaluate the quality of long term care service providers, including hospice agencies, nursing homes and residential care homes.  Note that you can review facility ratings, consumer complaints and discrepancies that State inspectors have recorded over the past several years for each facility and organization.

The American Hospice Foundation

This site covers the full range of hospice care and includes helpful articles, publications and resources relating to end-of-life issues and hospice care. Excellent information, clearly written, easily read and understood.  

On Our Own Terms

This PBS website summarizes the four-part, six-hour series that took Bill Moyers from the bedsides of the dying to the front lines of a movement to improve end-of-life care. The site combines multimedia, online articles and resources for further research. Very well done.

American Academy of Hospice and Palliative Medicine

This site is most helpful for its End of Life/Palliative Care Educational Resources link and its "related sites" resources link.

The National Hospice and Palliative Care Organization

The oldest non-profit organization devoted exclusively to hospice care. Use the Hospice and Palliative Care link for an excellent source of information on all aspects of hospice care.

Hospice Net – Death and Dying, Caregiving and Grief

An outstanding collection of information in one location. In addition to general information about hospice, this site also provides specific information of interest to hospice clients, caregivers and children. The topic of bereavement is also detailed.

Americans for Better Care of the Dying

Go right to the "Reading Room" link for discussions of topics including "Living With Illness", "Finding Meaning", "Helping Loved Ones", "Getting the Help You Need", "Talking With Your Doctor", "Managing Symptoms" and others.  

Growth House

An excellent website for professionals and the general public. In their own words, "Growth House, Inc., provides this portal as your international gateway to resources for life-threatening illness and end of life care. Our primary mission is to improve the quality of compassionate care for people who are dying through public education and global professional collaboration. Our search engine gives you access to the Internet's most comprehensive collection of reviewed resources for end-of-life care."

Texas Partnership for End of Life Care

The "Community Education" section is the best area of this website. Topics such as "Questions to Ask Your Doctor, Clergy or Family" and "Advance Directives" are discussed.

AARP

The "End of Life" section covers hospice and palliative care issues, plus information on practical matters such as estate planning, wills and power of attorney. The section on "Grief and Loss" could also be very helpful.

Advance Directives

Partnership for Caring provides free state-specific advance directive documents that can be opened as PDF (Portable Document Format) files. The documents include of living wills and/or medical powers of attorney forms with clear instructions for completing them, as well as advice on how to handle the notable points of law. If you have additional questions, they also list their toll free hotline.  Note that you should always consult with your own attorney before using forms such as these.

Medical Information Sources

Medline Plus

A comprehensive source of information on medical conditions, diseases, wellness and prescription drugs. The site also includes a medical dictionary and encyclopedia, as well as online interactive tutorials on a variety of medical conditions and diseases.

PubMed

This site is for those who want to conduct very detailed research on medical conditions and diseases. PubMed, a service of the National Library of Medicine, includes over 15 million citations for biomedical articles back to the 1950's. These citations are from MEDLINE and additional life science journals. PubMed also includes links to many sites providing full text articles and other related resources.

CancerNet

This website of the National Cancer Institute is an excellent source of information for your questions regarding cancer.

Resources for Specific Illnesses and Conditions

When the U.S. hospice community was established in the 1970s, cancer clients made up the largest percentage of hospice admissions. Today, cancer diagnoses account for less than half of all hospice admissions.   Currently, the chronic illnesses hospices agencies the most are Alzheimer’s and adult dementia, lung disease (including Chronic Obstructive Pulmonary Disease or COPD) and heart disease.

Please visit these websites as one of your resources for more information on these illnesses.  

Alzheimer’s Disease and Adult Dementia

The National Alzheimers Organization

Use the navigation bar at the top of the page to review the information in "Alzheimer’s Disease" and "Living with Alzheimer’s".  Other pages on the website may also be of interest to you.

HealthCentral.com - Alzheimer’s information

This is a free site although you may register as a member, if you wish.

Lung Disease Including Chronic Obstructive Pulmonary Disease (COPD)

COPD Guide

This site is easy to read and has good, although basic, information about COPD.

COPD Support

This is a support site for those with COPD.  Go to the "Weblinks Program" section for a comprehensive list of websites that have information on all aspects of COPD.

American Lung Association

Scroll to the bottom of the page to find information on specific topics.

Heart Disease and Stroke 

The American Heart Association

This site provides comprehensive information about heart disease and includes a link to the American Stroke Association for additional information about strokes.

HeartHub

Use the "Health Centers" navigation bar on the left to learn more about heart conditions and strokes.

Bereavement Information Sources  

Hospice Net- Bereavement

Hospice Net is also listed above as a hospice care resource, but we list it here again because its section on bereavement is excellent.  

GriefNet

GriefNet.org is an Internet community of persons dealing with grief, death, and major loss. It consists of a number of email support groups and two web sites. GriefNet’s integrated approach to on-line grief support provides help to people working through loss and grief issues. Its companion site, KIDSAID, provides a safe environment for children and parents to find information and ask questions.

This educational content is for educational purposes only and does not constitute legal, financial, home improvement or health advice. Content on this page is provided by Ask The Experts and not the featured advertiser.

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