What is Hospice?
Hospice is a type of service which provides care for the terminally ill. It is a popular choice for many people who wish to spend their final days in receiving highly personalized care in a more intimate setting than in a hospital.
The main goal of hospice care is to assist with a patient’s level of comfort when curative treatments options are no longer being administered. Because of these circumstances, hospice care is offered in several locations, such as a personal residence (such as a house, condo, apartment, etc.), assisted living or long-term care facilities, hospice care facilities, and more.
While hospice care can be fairly expensive, it is usually covered (or sponsored) by Medicare/Medicaid, private health insurances, Health Maintenance Organizations (HMOs), and several other groups. It is important to note that hospice care is non-discriminatory – this means that a person of any age, sex, race, ethnicity, religion, or illness is eligible to hospice care.
Hospice care serves many purposes, including offering opportunities for emotional closure before a patient's passing. This usually means contemplating one's legacy, the meaning of life, reflecting on past and/or present relationships, and support with achieving any goals before passing.
Most importantly, hospice care prioritizes support and comfort for both patients and their families. For example, since it usually includes several forms of counseling and therapy, hospice care can even continue after a patient passes away by offering services for family and friends.
History of Hospice Care
The origin of the word “hospice,” comes from the same Latin root as the one used for the word “hospitality.” Hospices have been used for centuries – in fact, they were used as shelters for travelers in medieval times. However, hospices have been used for terminally ill patients since the mid-1900s, when an English woman named Dame Cicely Saunders, started what would eventually become the modern hospice movement. The movement first made its way to the United States in the 1960s when Saunders gave a lecture on her work at Yale University.
When Should Hospice be Considered?
Many choose for a loved one to start receiving hospice care services when an illness or disease has been deemed terminal and/or life-limiting. Some of these diseases include:
- Advanced dementia, such as late stage Alzheimer’s.
- Terminal cancer
- Advanced heart disease
- Advanced lung disease
- Amyotrophic Lateral Sclerosis (ALS)
Although the discussion may be difficult, it is usually recommended to start planning for hospice care before a patient has an immediate need for its services. Planning ahead can reduce stress and disorganized decision making. Planning ahead also allows for patients to be more involved with their own end-of-life plan.
Although many general healthcare professionals are knowledgeable on hospice care and should be able to assist in making the decision to choose hospice, the decision to put a loved one in hospice care usually comes down to two parties – the loved one’s physician(s) and family (if hospice care is not planned ahead of time, the patient may not be involved with hospice care decisions). In fact, unless one or more physicians give a patient a short-term life expectancy (usually about 6 months or less), a patient may not even be eligible for hospice care.
A short-term life expectancy is commonly the most significant motivating factor when it comes to prioritizing symptom management over curative treatments. This priority shift usually results in a loved one being placed into hospice care. However, there are several other factors to consider, such as:
- Immobility (having to spend the majority of day in bed or a chair)
- Frequent trips to the hospital and/or multiple episodes requiring emergency medical care in a short amount of time
- Body deterioration (weight loss, instability, shortness of breath regardless of physical activity, etc.)
- Other hindering and unmanageable symptoms
It is usually recommended to begin hospice care as soon as possible after a patient becomes eligible – a hospice care program may even reach out to the patient and/or the patient’s family within a couple of days after a patient becomes eligible.
Although the choice of hospice care is made clear to a patient and/or a patient’s family soon after the patient becomes eligible, many patients only start hospice care at the very end of their lives. Hospice care has been found to be very effective in making patients comfortable and providing useful assistance to their families. The sooner the hospice care starts, the sooner patients and their families can benefit from hospice care services.
It is important to remember that once started, a patient isn’t locked into receiving hospice care until they pass away. Patients and their families may choose to end or transfer hospice care at any given time.
What does Hospice Include?
Hospice care is most commonly used for managing pain (and other debilitating symptoms) of an illness. It is also used for preparing patients and their families for death, providing patients with medical assistance (including providing necessary medications), coaching a patient’s family and friends on caring for a patient, providing therapies of all types for both patients and their families, and much more.
Hospice care usually involves a spouse, or other family member, serving as the primary caregiver of a patient, as well as the person making medical decisions on the patient's behalf. Hospice staff provides medical assistance and other services which the primary caregiver may not be able to provide or would otherwise be administered in a hospital. The service provided by hospice care providers is usually available 24 hours a day, 7 days a week. Hospice care staff receive thorough training, for both physical and emotional symptoms of a terminal illness, to help a patient and a patient’s family be as comfortable as possible.
In terms of personal service, hospice care usually involves making a personal care plan with a patient and a patient’s family. Throughout the care, hospice service providers will carry out the directions and meet the goals laid out in the plan. The plan is subject to change as the needs of a patient and a patient’s family change.
Since hospice care is individualized to each patient and their family, many different types of service and trained professionals may be called upon to carry a care plan. The professionals involved in hospice care usually include:
- A hospice care physician (as well as a primary care physician)
- Registered and certified nurses (on call nurses are often available 24/7)
- Therapists and counselors
- Social workers
- Religious/spiritual counselors
Everything needed for hospice care is provided to a patient, no matter the location. If care is administered at a private residence, then hospital beds, medications, medical equipment, and hospice care staff are all brought into the residence for the care of the patient. Most, if not all, services from hospice care staff are decided (with the involvement of the patient and the patient’s family) and laid out in a patient’s care plan. A patient’s care plan will change as needed, usually as an illness progresses.
It is important to remember that just because these types of people and their services are usually available through hospice care, it doesn’t limit someone from using outside sources of care or counseling. Moreover, patients and their immediate family remain in charge of medical decisions throughout hospice care. Many people choose to continue to use their own physician, religious leaders, and friends and family are often involved with care of a loved one and perform several hospice care services on their own.
Where is Hospice Care Received?
Hospice care services can be administered in several locations, usually based on the needs and wants of patients and their families.
It is not uncommon for people to receive hospice care while staying at home, or another comfortable location. If this is the case for a loved one, there are many hospice services that include the option of at home, private care.
Hospice care services are also sometimes offered within hospitals, or hospice services may even have their own facilities which offer living options for those who cannot stay at home or be in assisted living. These facilities often provide private bedrooms and bathrooms, comfortable common living spaces and dining rooms, landscaped gardens, etc. These facilities also often encourage visitation from family, friends, children, and even pets! Many facilities have no restrictions on visitations – friends and family can visit patients privately or in a designated visitation area 24 hours a day, 7 days a week. The services these facilities provide are mostly parallel to all the services offered with private hospice care, such as personal healthcare, but many prefer these facilities over private care. The reason for this is because of the additional services offered such as onsite medical equipment (medical supplies and medications), various forms of alternative and traditional onsite therapies, housekeeping services (laundry is usually included), and prepared meals.
Hospice services are also usually available to those in assisted living or long-term care facilities, such as a nursing home. Patients who receive hospice care while in assisted living or long-term care receive care from both services. Most (if not all) quality assisted living or long-term care facilities have had experience with patients receiving hospice care and may have already outlined rules and/or regulations with specific hospice care services or hospice care service in general. Be sure to inquire with both parties (assisted living/long-term care facilities and hospice care services) to get a better understanding on how both types of services will provide care for a single patient.
Hospice Care for Veterans
Hospice care for veterans should be as, if not more, dignified as any other care service. We Honor Veterans is a program of the National Hospice and Palliative Care Organization (NHPCO) which collaborates with the Department of Veterans Affairs (VA). We Honor Veterans recognizes veterans and their families as special members of the community and offer the Hospice-Veteran Partnerships (HVP) program, a national program of the VA Hospice and Palliative Care Initiative. For more information about this organization and what they provide for veterans and their families, click here.
FAQs Regarding Hospice Care
- How do I find quality hospice care? – Finding hospice care services should not be difficult; most communities have several different local hospice care services available. The more important part of finding hospice care, is finding quality hospice care. It is also important to find a hospice service which is suitable for the unique needs of a specific patient. It is recommended to explore several different services, as well as consulting with a physician familiar with a patient’s specific needs, before committing to one hospice care service. Due, to what many feel, is a lack of certification and official recognition of hospice care services, many hospice care businesses seek out some sort of official recognition through programs, independent of the state or federal government, to instill confidence in their patients and their families. Groups such as The National Hospice and Palliative Care Organization, The Joint Commission, The Community Health Accreditation Partner, and others have created programs to help recognize quality care services.
- The National Hospice and Palliative Care Organization has compiled a list of recommendations for standard quality hospice care, which is appropriately titled “Standards of Practice for Hospice Programs.” To explore these standards, click here.
- The National Hospice and Palliative Care Organization offers additional resources for hospice and palliative care. To explore these resources, click here.
- The Joint Commission offers a guide on how to choose quality hospice care. To read this guide, click here.
- The Community Health Accreditation Partner (CHAP) offers a list of healthcare providers (including hospice) which they have deemed accredited. To use the CHAPs locator tool, click here.
- The National Hospice and Palliative Care Organization (NHPCO) also offers assistance with finding hospice and palliative care. To use the NHPCO’s locator tool, click here.
- What happens if a patient starts hospice care at a private residence, but later can no longer stay at home? – If a patient can no longer stay at home after having already started hospice care, there are several possible options to consider. Hospice care services often have their own facilities (or at least some sort of arrangement/partnerships with other hospice care facilities) which a patient can move to. Another option is to move to a patient to a hospital or inpatient residential care center. One other option is to stop hospice care from a specific service and transfer to another which offers additional living situations and/or care services outside of a private residence. Unfortunately, many people (both patients and their families) find themselves in a position where they are unable to make this decision for themselves as it usually comes down to two factors: what a specific hospice care service offers, and what a patient’s medical insurance is willing to cover.
- Is there any state or federal involvement with hospice care services? – Most states require the acquiring and maintaining of official licensing in order to legally provide hospice care. Additionally, federal regulations for providing hospice care must be met for monetary reimbursement (services which accept Medicare are refunded by the federal government for care service costs).
- Outside of licensing, is there any state or federal surveying/evaluation of hospice care services? – If Medicare is accepted by a hospice care service, they should have been surveyed at some point by the government (probably within the last two years). Be sure to ask about when the last survey was conducted and if anything noted as insufficient has been addressed.
- Are reviews of hospice care services from previous patients’ families available? – As most hospice care services encourage family involvement, any family should have a lot to say about the experience. A Family Evaluation of Hospice Care (FEHC) will be conducted by most reputable hospice care services. Be sure to ask to see the most recent FEHC reports/scores, a quality hospice care service should be able to proudly provide them.
- Are hospice caregivers certified specifically for hospice care? – While there are very little (if any) official or legal requirements when providing hospice care, many programs offer hospice caregivers the opportunity to demonstrate their knowledge of the specifics of hospice care. Although certification is not required of Medical Directors, be sure to that any Medical Director of hospice or palliative care is certified – no quality service will have a medical director without certification.
Please note that the certification requirements for medical are far more rigorous than the qualifications required of hospice caregivers. Medical staff should all be qualified in their own field – for example, a doctor involved with hospice care should have a medical degree, like any other practicing physician
- Hospice care services given in a residential home are usually advertised as 24/7, but is it really 24/7? – Quality hospice care services which promise 24/7 care for a patient living at home should be available, at least by phone, 24 hours a day, 7 days a week. Some hospice services offer more limited care during nights and weekends while some will immediately send appropriate hospice care staff (including social workers or religious counselors) regardless of the time or day.
- If care services are available 24/7, does that mean a patient can be admitted 24/7? – The short answer is that it depends on the service. Some hospice care services are willing to admit a patient on any day, at any time. The timing of starting hospice care can be important to patients who were referred in the evening, on the weekend, or on a holiday – especially since it is usually recommended that hospice care should start as soon as possible after a referral.
- Is it important to consider how long a hospice care business has been operating? Or if the hospice is locally owned vs owned by a corporation? – The answer to this question comes down to preference. If this information is relevant to a patient or a patient’s family, be sure to inquire about these aspects of a hospice care business and then privately decide what to do with the given information.
- How many patients are assigned to each hospice caregiver? – The number of patients assigned to each hospice caregiver differs between each hospice care service. If asked, a quality hospice care service should be able to proudly provide an answer. Most quality hospice services will have 12 or less patients per caregiver.
- What do hospice care volunteers do? – Volunteer hospice caregivers can perform several tasks, at any location where care services are being given. In general, volunteer work usually includes visitations (which allows for family and friends to take a break), assisting with personal care (such as bathing or going to the bathroom), helping with housework, preparing meals, running errands, etc.
- What qualifications are required from volunteers? – Volunteers are most commonly screened and given training (sometimes specialized) by the hospice care service they volunteer for – in fact, it is common for volunteers to experience the same screening and training processes as paid caregivers. This process usually includes training on understanding the specifics of hospice care, working with families, confidentiality, how to provide physical and emotional support, how to look for signs that a patient may pass away soon, etc.
Cost of Hospice Care
Most private healthcare insurances, as well as Medicare/Medicaid, will cover the cost of the actual care provided by hospice services, which often includes the cost of using a care team and medical supplies, such as medicines and equipment. This coverage is usually full – there is a good chance hospice care may cost nothing to a patient. If a patient is receiving care at a facility, a healthcare insurance provider may not cover the cost of room and board. If cost a concern, it is worthwhile to inquire into financial assistance options. If a patient qualifies, there are organizations which may sponsor a patient for the cost of hospice care. Regardless, make sure to do all of the necessary research about the coverage and benefits available to each specific patient receiving hospice care services.
Additional Care Services – Palliative Care
Traditional palliative care is very similar to hospice care, in that its goal is to help alleviate the burdens of an illness, however there are several differences to be aware of. While hospice care is usually started when an illness has progressed into its later stages, palliative care can be administered at any point during an illness, no matter the prognosis.
Palliative Care vs Hospice Care
- Palliative care typically provides assistance with symptom relief, patient and family support, and healthcare management/decision-making. Hospice care offers these services as well, however since hospice care is usually given to terminally ill patients with a short life expectancy, patients and families using hospice care will receive more extensive and frequent services than those offered with palliative care.
- Palliative care can be administered at any stage of an illness, while hospice care is usually given only after a physician (or more) has declared that an illness will likely result in a patient’s death in six months or less. Hospice care patients are often at a point where treatments to cure their illness are no longer useful or wanted. However, with palliative care patients, it is not uncommon for them to be receiving care during their curative treatments, such as chemotherapy. This means that care options are not as limited with palliative care as they are with hospice.
- Hospice care can usually be given in almost any location a patient chooses while palliative care is more commonly limited to more independent living situations.
Many hospice care services to adopt some of the care practices offered by palliative care and are starting to offer services to patients still undergoing curative treatments, however this is not a standard in hospice care yet.
While the transition to end-of-life care may seem daunting for a patient and their loved ones, hospice care is intended to help ease the burden. The services and high standard of care can be a great help in alleviating the most difficult physical, financial, and emotional aspects of navigating a terminal condition.