Hospice: Facts About the History of Hospice and Respite Care

Hospice facts

Hospice care is a service, which may be provided at home, in a hospital, a nursing home, or in a facility specifically designated for such service.
Hospice does not hasten or prolong death.
Hospice care may be recommended for patients with a usually less than six-month life expectancy and an incurable illness for whom the focus of care is primarily comfort.
The goal of hospice is to provide comfort, reduce suffering, and preserve patient dignity.
A team consisting of doctors, nurses, social workers, clerics, volunteers, and therapists participate in the care of hospice patients.
Medicare, Medicaid, and most private insurance carriers provide hospice benefits.

What is hospice care?

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Hospice is a field of medicine that focuses on the comprehensive care of patients with terminal illnesses. Hospice need not be a place but rather a service that offers support, resources, and assistance to terminally ill patients and their families.

The main goal of hospice is to provide a peaceful, symptom-free, and dignified transition to death for patients whose diseases are advanced beyond a cure. The hope for a cure shifts to hope for a life free of suffering. The focus becomes quality of life rather than its length.

Hospice care is patient-centered medical care. A host of valuable services are offered to address every aspect of the patient's care as a whole. This is achieved by considering each individual's goals, values, beliefs, and rituals.

Why is hospice care important?

In many chronic and progressive conditions such as cancer, heart disease, or dementia, the natural disease process can ultimately reach an end stage. Most of the time, as a disease progresses to an advanced stage, its symptoms become more intolerable and difficult to control. As a result, an end-stage condition can significantly impair a person's functional status and quality of life.

At this point, often there is no further cure or treatment to control the progression of the disease. Furthermore, aggressive treatment may only offer little benefit while posing significant risk and jeopardizing the patient's quality of life.

In such late stages of diseases, hospice can offer help for patients and families. The use of the term "nothing left to do," is generally to be avoided by health care professionals. There may be nothing with curative potential to do, but there is always something to do that helps with symptoms or improves quality of life. There are many aspects of a patient's well-being that can be addressed. Hospice can play a key role in managing physical symptoms of a disease (palliative care) and supporting patients and families emotionally and spiritually.

Hospice care promotes open discussions about "the big picture" with patients and their loved ones. The disease process, prognosis, and realities are often important parts of these discussions. More importantly, the patient's wishes, values, and beliefs are taken into account and become the cornerstone of the hospice plan of care.

Hospice and palliative care philosophy encourages these type of discussions with treating physicians early on in the course of a terminal disease. Patients can outline their preferences before they become too ill and incapable, thereby relieving some of the decision-making burden from family members. Advance care directives can be discussed and their completion facilitated in this setting.

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What is the history of hospice?

Toward the end of the 19th century, hospices became designated places for the care of terminal patients in Ireland and England. The modern concept of hospice was later developed in England in 1967 by Dr. Cicely Saunders.

St. Christopher's hospice was the first hospice under the direction of Dr. Saunders. The philosophy of end-of-life care and the practice of hospice have since spread to many other countries around the world.

In the United States, hospice was originally run by volunteers who cared for dying patients. In the 1980s, Medicare authorized formal hospice care and Medicare hospice benefits became part of Medicare Part A. State-run insurances or Medicaid also offer hospice benefits, as do most private insurances.

Currently in the United States alone there are several thousands of hospice agencies. This branch of the medical field continues to grow as more people live longer with their chronic conditions. As a result, hospice can become a reasonable option for more patients during the disease progression.

In the early 1990s, hospice became an official medical subspecialty and physicians involved in the care of hospice patients could become board certified in hospice and palliative medicine.

What are the main goals of hospice care?

The end-of-life period is a sensitive part of everyone's life cycle. Psychosocial, financial, interpersonal, medical, and spiritual conflicts are all intertwined.

The main goal of hospice care is to reduce potentially unavoidable physical, emotional, psychosocial, and spiritual suffering encountered by patients during the dying process.

As a result, medical care during this period is very delicate and needs to be individually tailored. End-of-life care requires detailed attention to each person's wishes, beliefs, values, social situation, and personal characteristics.

The complex care of hospice patients may include the following:

Managing evolving medical issues (infections, medication management, pressure ulcers, hydration, nutrition, physical stages of dying)
Treating physical symptoms (pain, shortness of breath, anxiety, nausea, vomiting, constipation, confusion, etc.)
Counseling about the anxiety, uncertainty, grief, and fear associated with end of life and dying
Rendering support to the patient, their families, and caregivers with the overwhelming physical and psychological stresses of a terminal illness
Guiding patients and families through the difficult interpersonal and psychosocial issues and helping them with finding closure
Paying attention to personal, religious, spiritual, and cultural values
Assisting patients and families making their wishes known and also reaching financial closures (living will, trust, advance directive, funeral arrangements)
Providing bereavement counseling to the mourning loved ones after the death of the patient

What are some misconceptions about hospice care?

Many misconceptions about hospice care still exist in the mind of the public and health care professionals. For example, it is perceived that hospice is a physical location and it only treats pain in cancer patients.

The following are some of the true facts about hospice to clarify these misconceptions.

Hospice care can be provided in many settings. It need not be only a physical place where patients go to die.
Hospice is not only for cancer patients.
Hospice does not deal only with pain management.
Hospice does not hasten or prolong death.
Hospice does not discriminate based on age, gender, race, or religion.
Hospice does not participate in or encourage active euthanasia.
Hospice does permit patients to see their regular physician.
Hospice does allow patients to go to hospital if they choose.
Hospice can be revoked at any time by patients or their families.
Hospice can be provided for children with terminal disease.

What kinds of services does hospice care provide?

Services provided under hospice depend on the patient's needs and medical condition. General services provided by hospice include

routine medical assessment and evaluation by a physician,
frequent nurse visits ranging between daily to weekly depending on patient's needs and condition,
spiritual counseling,
social worker evaluation,
volunteer services.

Additional personnel, including dieticians, pharmacists, home health aids, and other therapists, can also be involved in the care of a patient under hospice.

Contribution from these team members is dictated by the needs and goals of the patient.

In regards to medications, hospice typically supplies medications that help with managing and controlling the symptoms of the underlying condition.

In addition, durable medical equipment and medical supplies are routinely provided and covered under hospice benefits. Wheelchairs, hospital beds, wound care supplies, oxygen tanks, nutritional supplements, diapers, and urinary catheters are examples of some of the equipment often provided to patients by hospice.

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Are hospice services available for children?

Most, but not all, hospices render care for pediatric patients with terminal illnesses. The care provided for children on hospice is generally even more delicate and complex because of

challenges in communicating with children about their illness,
children's perceptions about illness and death,
difficulty assessing children's symptoms,
unnatural and dramatic circumstance for parents,
effects of a child's illness on other siblings and friends,
uneasy social interactions with other children.

Hospices which provide pediatric care often use the expertise of counselors, therapists, and social workers trained in child psychology and communication.

Can hospice care be offered at home?

Yes, because hospice is a service which can be provided in many different settings. Its location to deliver care is based on each individual's preference. In fact, the majority of patients on hospice stay at their home or their usual residence (nursing homes or long-term care facilities) as they did prior to going on hospice.

Hospice care can be offered where the patient lives as long as the environment is safe, and the intensity of care does not overwhelm the patient and caregivers. Occasionally, a patient may need to be moved to a nursing facility or another health care setting if their home care becomes unachievable. This situation usually arises because of a need for higher level of personal care or uncontrolled symptoms requiring close monitoring by trained staff.

What are some medical conditions commonly referred to hospice?

Even though cancer remains one of the most common hospice diagnoses, many other terminal conditions are now very routinely referred to hospice.

Conditions other than cancer that are commonly referred to hospice are

lung disease (chronic obstructive lung disease, COPD);
heart disease, congestive heart failure;
stroke;
coma;
advanced liver disease, cirrhosis;
end-stage kidney disease;
dementia (Alzheimer's or other types);
advanced neurologic diseases (Parkinson's disease, ALS);
human immunodeficiency virus (HIV)/AIDS.

In reality, no specific restrictions exist as to what conditions can be referred to hospice. Any disease that is deemed end stage is not reversible, and its further treatment poses more burden than benefit can be considered for referral to hospice.

How is referral to hospice made?

Referral to hospice is considered when a physician believes the patient's life expectancy is less than six months if the disease runs its natural course. Clinical guidelines are available to help clinicians with these determinations.

The option for hospice is then presented to the patient or their surrogate decision makers. If the patient's or their decision makers' goals and wishes are in line with hospice principles, then a formal referral can be made by the doctor.

Hospice staff meet with the patient and family to discuss hospice services. They evaluate the patient's medical condition, functional level, living situation, religious beliefs, and social support system. They determine long-term goals, wishes, and expectations of the patient and family members.

Once criteria for a terminal diagnosis are established and the patient and family consent to hospice care, a two-physician certification has to be signed certifying the terminal illness and appropriateness of hospice. The hospice certificate is typically signed by the referring physician and the hospice medical director.

How does hospice care work?

Hospice strives to optimize comfort and quality of the remaining life and to preserve patient's dignity. The patient agrees to forego further treatment aimed at curing their disease. A comprehensive care plan consistent with the patient's goals and wishes is established.

Routine home visits from nurses, social workers, clergy, volunteers, caregivers, and home aids are provided. The frequency of these visits may vary considerably for each patient's individual situation. Hospice nurses visit the patient at least once or twice a week, but these visits can increase to as often as daily in a crisis situation. Other staff may also attend to the patient as frequently as the patient's care mandates.

For patients living in assisted-living facilities or nursing homes, collaborative hospice services are coordinated with the facility's own staff.

Hospice medical directors or other hospice contracted doctors are available to the hospice team by phone 24/7 to address any issues that may arise at any time with patients.

The patient's personal physician or primary care physician can stay on as the attending physician if he or she chooses to. In these situations, the primary doctor can work in collaboration with the hospice team and the hospice medical director. If the primary care physician decides not to follow the patient on hospice, then the hospice medical director acts as the patient's primary care physician.

Home visits by hospice doctors are sometimes necessary in cases of crisis or in situations where a physician's expertise is necessary in the care of the patient. Furthermore, since the beginning of 2011, Medicare has mandated more frequent doctor visits if a patient remains on hospice beyond six months. A face-to-face patient encounter is required every 60 days to justify continual hospice care.

Medications for treating pain and other symptoms, as well as medical supplies and equipment, are part of the care provided by hospice for their patients.

Generally, therapies that are thought to be a cure for the underlying hospice condition are not offered. For example, a patient who has a terminal cancer as their hospice diagnosis may not receive any further chemotherapy and radiation for a curative purpose while on hospice. However, if such a therapy is offered to relieve an intractable symptom (for a palliative reason), some hospices may agree to cover these costs.

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Who is part of the hospice team?

At the very core of every hospice there are four required components: medical doctors, nurses, social workers, and chaplains.

In addition to these core components, essentially all hospices benefit from involvement of other support staff who make irreplaceable contributions to patient care and are vital to survival of hospice organizations. Contributions of these team members vary between hospices and depend on the plan of care of the patients.

Hospice volunteers are an integral part of the hospice team. They assist patients with meal preparation, running errands, companionship, basic needs around the house, and other projects to help the patient and the family. Certified home health aides are another important part of hospice care. Home aides are usually employed by hospice and help patients and families with personal care such as assistance with bathing, feeding, and other basic needs.

Hospices often utilize other ancillary staff including

nurse assistants and LVN (licensed vocational nurses),
dieticians or nutritionists,
speech, physical, occupational therapists,
bereavement counselors,
respiratory therapists,
pharmacists.

Less commonly, some hospices may utilize the expertise of acupuncturists, music therapists, massage therapists, psychologists, or art therapists if these services are thought to improve the patient's symptoms or overall quality of life.

Hospice patients are always (24 hours a day, seven days a week) under the care of the hospice medical directors through nurses and other hospice team members.

An essential component of hospice care is the interdisciplinary team (or IDT) meeting which takes place every two weeks. During the IDT, each patient's progress, active issues, and overall plan of care are thoroughly reviewed by the hospice medical directors, nurses, social workers, volunteers, chaplain, and other ancillary staff who are involved in the patient's care.

Because hospice care is centered around the patient as a whole, the recommendations and input from each team member in IDT contribute meaningfully to the overall plan of care.

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What is respite care?

Respite care is a rest period provided for hospice patients' families or caregivers. In cases where a patient's caregiver (either family or private caregiver) has an emergency or simply needs to rest temporarily from the burden of caregiving responsibilities, respite care can be arranged.

During respite care, a hospice patient can be moved for a period of up to five days to a nursing home while caregivers can take a brief time off. This period allows the family or the caregiver to address their own issues or simply take a much needed rest. After the respite period, the patient can return home.

Who is eligible for hospice care?

As a general guideline, hospice is recommended to a patient with an incurable terminal disease with a life expectancy of six months or less if the disease were to run its normal course.

Although this is the rule by which Medicare defines hospice eligibility, it is not always possible to predict whether an individual will live less than six months. Therefore, certain clinical criteria are in place for common hospice diagnoses. Physicians can use these guidelines to assess whether someone is a candidate for hospice referral.

In addition to disease specific criteria, there are also other general guidelines for hospice eligibility. These guidelines are based on the patient's functional status and physical signs and symptoms which can indicate advanced stages of a disease regardless of the diagnosis.

Even with these guidelines in place, many patients outlive the six-month period on hospice. If this happens, hospice can thoroughly reassess the overall condition of the patient and determine whether there are signs of ongoing clinical decline. They can then recertify the patient to remain on hospice if there is evidence of disease progression.

Sometimes, the disease may stabilize, or the patient's condition may show evidence of improvement during hospice care. In these situations, hospice will terminate hospice care and the patient can resume their routine health-insurance benefits which they had prior to the hospice enrollment.

Who pays for hospice care?

Medicare recipients are entitled to receive Medicare hospice benefits under Medicare Part A. Most state Medicaid programs also cover these services. The majority of private insurance carriers have hospice benefits as well.

How can people find and choose hospice care?

There are numerous choices for hospice care in every state, county, and city. The list of hospice companies for patients to choose from varies based on the location.

Although hospices typically offer the same basic requirements and focus on the comfort and quality of life, there is also some degree of flexibility and variation among different hospice agencies.

Your physicians or local hospitals may recommend a hospice for you. Most physicians are familiar with local hospice organizations and can refer patients or provide a list of what is available.

The following lists some general resources for people who are interested in more information about hospice in their local areas:

Primary care physician, specialists, or hospital doctor (hospitalist)
Local hospitals and urgent care centers
Medical social workers
Nursing homes or skilled nursing facilities
State health department
Health insurance carrier
Local home health agencies
Phonebook
The Internet

What questions should people ask of hospice agencies?

Hospice frequently asked questions (FAQ)

1. Who pays for hospice?

Most people are concerned about the how the cost of hospice is covered. Medicare hospice benefit is a part of Medicare which would cover hospice care once a Medicare beneficiary is enrolled in hospice. Most other private insurance plans also carry their own hospice benefits.

2. Can I take my regular medications on hospice?

Many people want to know whether they should continue taking their regular medication while on hospice. This depends on the patient's goals, medical condition, prognosis, and the indication for these medications. In general, most medication can be continued as long as they do not interfere with patient's comfort and are not taken as a potential cure for the hospice qualifying condition. Most people prefer to take fewer pills. They can ask hospice which medications they can safely discontinue without an untoward reaction.

3. Can hospice help with my living situation?

Many people may have difficulty with having their loved ones die at home or simply are unable to provide the level of care that is needed. Hospice agencies often have relationships are local assisted-living facilities which can accommodate hospice patients, usually at an additional cost. Alternatively, sometimes Medicaid plans can cover some of the room and board cost at these rest homes.

4. Can hospice provide treatment for infections?

Many patients and families are concerned whether they can receive treatment for infections such as pneumonia or urine infection. Hospices are flexible in terms of their approach to treating reversible infections. Most, but not all, offer diagnostic tests and antibiotics. It is important to address these concerns during the initial hospice evaluation.

5. Is my own doctor allowed to see me on hospice?

Others want to know if they can still see their own regular physicians. As mentioned earlier, primary care doctors can continue to follow their patients on hospice and even make home visits.

6. Is it possible to go the hospital if I am on hospice?

Hospitalizations are covered if someone's symptoms are out of control despite routine hospice care at home. Patients can also be hospitalized for conditions unrelated to the hospice diagnosis. For example, if a patient with cancer suffers a fall and has a hip fracture, hospitalization may be required to fix the fracture. In this scenario, the patient's insurance usually covers the hospitalization in addition to the hospice benefits.

7. Other than medication and equipments, what other services does hospice offer?

Ancillary services such as nutritionists, therapists, and home health aides provide valuable services for hospice patients. The degree to which every hospice utilizes these services varies widely. Sometimes these additional interventions are important to patients and their families. Thus, it is advisable to discuss the availability of these services with the hospice representatives.

Where can a person find more information about hospice care?

A good starting point for people to find out more information about hospice care is their primary care doctor's office or local clinics and hospitals.

Other than the resources listed previously, one can also search the Internet for more information or refer to the following:

National Hospice and Palliative Care Organization
http://www.nhpco.org/templates/1/homepage.cfm
The National Association for Home Care and Hospice
http://www.nahc.org
National Institute of Health (NIH)
http://www.nih.gov
Hospice Medicine Foundation
http://www.hospicemedicinefoundation.org
American Academy of Hospice and Palliative Medicine
http://www.aahpm.org/index.html
Medicare publications and web site
http://www.cms.gov
State Medicaid publications