Hospice

Hospice is patient centered care, and the goal is to provide whatever services may be needed to provide the patient comfort and dignity.

Hospice is a model of medical care that offers support, resources, and assistance to terminally ill patients and their families. The focus of hospice care is quality of life and not quantity. The goal of hospice care is providing pain relief and comfort to the patient, and attending to the emotional and physical needs of the family, loved ones, and caregivers.

Hospice care is patient centered and patient focused.

The term hospice originated in the Middle Ages as a place where travelers and pilgrims could stop and rest. At the end of the 19th century, in Ireland and England, hospices were designated as places to provide care for the terminally ill.

The modern concept of hospice was originated in 1967 by Dr. Cicely Saunders at St. Christophers where she promoted the philosophy of end-of-life palliative care.

In the United States, hospice is a term related to the care provided and not a physical space. In the rest of the world, hospice often refers to the facility where palliative care is provided.

Palliative care works with the patient who is very ill to maximize quality of life and decrease suffering. The support provided may occur at the same time as the patient’s medical team is seeking to cure the patient.

Palliative care is at the core of hospice care, except that the patient is at end of life, and cure is not possible. Similar supports for the patient and the family are provided in both situations.

In essence, all hospice care is palliative, but not all palliative care is hospice.

Hospice plays a key role in managing the physical symptoms of a disease (palliative care), and supporting patients and families at end of life.

In many situations diseases can be controlled, but the natural progression of the disease leads to death. In advanced stages of these diseases, symptoms may become intolerable and difficult to control. They can significantly impair a person's functional status and quality of life.

When there is no further cure or treatment available to control the progression of the disease, end of life care considers the quality of the life that is left, rather than the quantity of time that can be lived. Aggressive treatment may offer little benefit, while posing significant risk and decreasing the patient's quality of life.

Hospice care promotes open and frank discussion about disease prognosis. These discussions surround what can be expected as the body and brain succumb to a non-curable disease. The disease process, prognosis, and realities are important parts of discussions with family, loved ones, and caregivers. The patient's wishes, values, and beliefs are taken into account, and become the cornerstone of the hospice plan of care.

The philosophy of hospice and palliative care is a discussion that happens between care providers and patient/family early in the course of a terminal disease. Patients can understand their prognosis and express their preferences before they become too ill to capably do so. It allows family to understand the patient’s wishes and complete advanced care planning such as living wills, power of attorney for health care, and power of attorney for legal matters.

The goal of hospice care is to keep patients comfortable and to maximize quality of life for their remaining time. The care and treatment provided by the hospice team is in line with the patient’s requests and values. Family and loved ones’ inputs are also honored.

Hospice care attends to all needs of the patient. Each patient is different and their care is tailored to their physical, social, psychological, and spiritual needs and requests.

The complex care of hospice patients addresses:

• 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 the 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 difficult interpersonal and psychosocial issues and helping them with finding closure
• Paying attention to personal, religious, spiritual, and cultural values
• Assisting patients and families in 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

Hospice services are provided to meet a patient's specific needs and medical condition(s). Each patient’s situation may require unique services.

General services provided by the hospice include:

• Routine medical assessment and evaluation by a care provider
• Frequent nursing visits
• Spiritual counseling
• Social worker evaluation
• Volunteer services

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

Contributions from these team members are dictated by the needs and goals of the patient.

Hospice typically supplies the medications needed to manage and control 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 just some of the examples of the equipment provided to patients by hospice.

Hospice services are available for infants and children with terminal illnesses.

The care provided for children in hospice is generally delicate and complex because of their age. Some issues include the following:

• Challenges in communicating with the child about their illness
• The child’s perceptions of illness and death
• Difficulty assessing the child’s symptoms
• Unnatural circumstances that make it difficult for parents to process and accept
• Effects of the child's illness on other siblings and friends
• Uneasy social interactions with other children

Hospice care that provides pediatric care often use the expertise of counselors, therapists, and social workers trained in child psychology and communication.

Hospice is a service that can be provided in many different settings. Its location is based on each patient’s preferences and needs. The majority of patients in hospice stay in their homes or their usual residence (nursing homes or long-term care facilities) as they did before entering a hospice program.

Sometimes situations change and the intensity of care overwhelms the patient and caregivers, making the home no longer safe. A patient may need to be moved to a nursing facility or another healthcare setting. Often there is a need for a higher level of personal care, more intense monitoring by trained staff, or more aggressive care to help control symptoms.

While cancer remains one of the most common hospice diagnoses, other diseases and illnesses are referred to hospice for care. Common diseases include the following:

• End-stage lung disease
• Severe congestive heart failure
• Debilitating stroke
• Advanced liver disease and cirrhosis
• End-stage kidney disease (ESKD)
• Dementia
• Parkinson's disease
• ALS (Lou Gehrig’s disease)
• AIDS

No specific restrictions exist as to what conditions can be referred to hospice. Any disease that is end-stage and not reversible, and whose further treatment poses more burden than benefit, may be considered for referral to hospice for care.

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. However, it is often difficult to know exactly when death will arrive, therefore this time frame is subject to be routinely reevaluated in the course of hospice care.

Ideally, the concept of hospice is presented gradually to the patient and their family as the course of the disease worsens. As the time frame becomes clearer, the potential for hospice is presented to the patient and/or their proxy. If their goals and wishes are in line with the hospice principle, then a formal referral will be made by the care provider to a hospice service.

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

The three stages for hospice referral include:

1. Criteria for the diagnosis and life expectancy are confirmed by their physician
2. Patient and family consent to hospice care
3. A certificate is signed by two physicians as to the appropriateness of hospice. This is typically signed by the referring physician and the hospice medical director. In the US, this is a Medicare requirement and some other insurance companies follow this requirement as well.

Hospice strives to optimize the comfort and quality of the remaining life and to preserve patients' dignity. The patient agrees that further treatment aimed to cure their disease will be stopped. A comprehensive care plan consistent with the patient's goals and wishes is established.

Routine 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 situation. Hospice nurses visit the patient at least once or twice a week, but the frequency of visits may increase as needed and may be daily or more in times of crisis. 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 staff.

Hospice medical directors and other hospice doctors are available to the hospice team to address any issues that may arise with patients.

The patient's personal physician or primary care provider may continue to be involved in the patient’s care. They work in collaboration with the hospice team and the hospice medical director. The primary care physician may ask the hospice medical director to act 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 for the care of the patient. Since 2011, Medicare rules require more frequent doctor visits if a patient remains in hospice care beyond six months. A face-to-face patient encounter is required every 60 days.

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 terminal cancer as their hospice diagnosis may not receive any further chemotherapy and radiation for a curative purpose while on hospice. However, if any other therapies are required to relieve an intractable symptom, such as pain or shortness of breath, they may become part of the hospice treatment plan.

As a general guideline, hospice care is recommended for a patient with an incurable terminal disease and a life expectance of less than six months.

There are also other general guidelines for hospice eligibility. These guidelines are based on the patient's functional status and physical signs and symptoms that can indicate advanced stages of disease regardless of diagnosis.

Even with these guidelines in place, patients may outlive their six months in hospice. If this occurs, hospice can reassess the patient’s situation and recertify the patient to remain in 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 care will be terminated and the patient can return to active treatment and care. Palliative care may still remain in place.

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, hospices benefit from the involvement of other support staff who make important contributions to patient care. Contributions of these team members vary between hospices and depend on the plan of care to meet the needs of the patients and family.

Hospice volunteers are an integral part of the hospice team. They assist patients with meal preparation, 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, and 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 receive around-the-clock care of 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, chaplains, 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.

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.

Hospice organizations are available throughout the country. Although hospices typically offer the same basic requirements and focus on comfort and quality of life, there is also some degree of flexibility and variation among different hospice agencies. The patient and family will need to determine if the hospice provider is a good match for the patient’s needs.

Most often, a care provider or hospital social worker will recommend a hospice service.

Other resources for hospice referral include nursing homes, county health departments, family and friends.

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 break. This period allows the family or the caregiver to address their issues or rest. After the respite period, the patient usually returns home.

The concept of hospice can be frightening to many. It can evoke the specter of imminent death, pain and suffering, and as a place people go to die.

In reality, hospice is a philosophy of care and not a physical location. Care can be provided anywhere the patient resides. Hospice is not just for cancer patients and it offers more than just pain control.

A few truths about these misconceptions include:

• Hospice is not just for cancer patients
• Hospice does not deal only with pain management
• Hospice does not hasten or prolong death
• Hospice does not participate in or encourage active euthanasia
• Hospice does not discriminate based on age, gender, race, or religion
• Hospice does permit patients to see their regular care provider -- the hospice team is an added care resource
• Hospice does allow patients to go to the hospital if they choose
• Hospice services can be revoked at any time by patients or their families
• Hospice is available for children with terminal disease

Hospice frequently asked questions (FAQ)

1. Who pays for hospice?

When a patient qualifies for hospice, Medicare will cover the cost of care. Medicaid and private insurance companies also provide hospice benefits.

2. Can I take my regular medications on hospice?

The goal for hospice care is comfort and many regular medications provide that. The hospice provider will review all medications with the patient and family and decide whether each contribute to quality of life and symptom control.

3. Can hospice help with my living situation?

It may be difficult to provide the level of care that is needed at home. Sometimes, a home is not set up to accommodate an ill patient.

Hospice agencies often have relationships with local assisted-living facilities that can accommodate hospice patients. Sometimes, Medicaid plans may cover some of the room and board costs at these rest homes.

Additionally, some families are not comfortable with a death occurring in their home. These emotional issues and others can be addressed by the hospice team.

4. Can hospice provide treatment for infections?

Many patients and families are concerned about whether they can receive treatment for infections such as pneumonia or urinary tract infection (UTI). Hospice care is flexible in terms of approach to treating reversible infections. Diagnostic tests and antibiotics may be considered, especially if it makes the patient more comfortable. Ultimately, it depends upon the situation, the patient’s status, and the benefit that the treatment might allow.

5. Is my doctor allowed to see me in hospice?

Primary care providers are an important part of hospice care and can continue to follow their patients in hospice and make home visits if needed

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

Hospitalizations are appropriate if the patient’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 for patient comfort and mobility. In this scenario, the patient's insurance usually covers the hospitalization in addition to the hospice benefits.

7. Other than medication and equipment, 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. 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.

It is important to remember that hospice is patient centered care, and the goal is to provide whatever services may be needed to provide the patient comfort and dignity.