Hospice is a term used to describe a program or facilities which are designed to meet the physical, emotional, social religious needs of people who are in the last stages of a terminal illness and are not expected to recover. It is also known as palliative care or end of life care.
The term “hospice” can be traced back to medieval times when it referred to a place of shelter and rest for weary or ill travelers on a long journey. The name was first applied to specialized care for dying patients by physician Dame Cicely Saunders, who began her work with the terminally ill in 1948 and eventually went on to create the first modern hospice called St. Christopher’s Hospice in a residential suburb of London.
Saunders introduced the idea of specialized care for the dying to the United States during a visit to Yale University in 1963. Her lecture, given to medical students, nurses, social workers, and chaplains about the concept of holistic hospice care, included photos of terminally ill cancer patients and their families, showing the dramatic differences before and after the symptom-controlled care. This lecture launched the following chain of events, which resulted in the development of hospice care as we know it today.
Today, hospice theory has evolved reaching far beyond just the intention to comfort and support those during the end of life. Today’s Hospice programs are typically covered by the “hospice insurance benefit” which is an extension of Medicare or other medical insurance coverage and as such is not able to keep the clear focus on the “comfort” of hospice due to restrictions implemented by the insurance.
What many do not realize is that when you assign all of your Medicare benefits to the Hospice Insurance Benefit, you are giving up many choices for treatment. You no longer are able to use your medical insurance to see a specialist, get any restorative physical therapy or home health care services, lab or diagnostic testing that would be covered under other medical insurance like traditional Medicare or even Advantage Medicare. As consumers of insurance you are only able to choose one type at a time; Hospice Insurance Benefit, Medicare or Advantage Medicare. While you can switch between the choices doing so typically comes with the loss of continuity of care since the system typically don’t cross over seamlessly
Generally, hospice eligibility requires two things. 1) your condition is considered incurable. This is called a terminal illness. 2) Your doctor has stated that your life expectancy is 6 months or less. It can be hard for doctors to know how long a person will live. Some people live longer than expected. If you live longer than 6 months, you can continue on hospice, if the doctor recertifies your hospice need. If your illness gets better, you can stop receiving hospice care.
Today Hospice is provided using the Hospice Insurance Benefit. It replaces all general medical insurance coverage you had before. When you enroll in a Hospice Program you automatically get dis-enrolled from Medicare or other medical insurance. Medicare will no longer pay for you to visit your private physician. Hospice must agree in advance to pay for any out of network benefits such as being treated in the hospital, x- rays, blood work and restorative therapies like physical and occupational therapy. It is possible to do those by disenrolling from hospice for a few weeks then re enrolling, but they are not typically included services.
When you enroll in a Hospice Program it is very important to be sure you or your loved one is in the final stages of life and would not benefit from being able to utilize their traditional Medicare insurance for regular heath maintenance.
In most cases, Hospice care is provided in the home setting, but it can also be provided in Residential Care Homes, Assisted Living Facilities and Retirement Communities. Many Hospice Programs have an in-patient unit as well, where patients can go for short periods of time, generally less than a week, for heavy care needs that the hospice team cannot provide in the home environment. After the of week of inpatient hospice coverage is used the patient will likely be required to return home or move to another care setting that can provided the needed amount of chronic care & supervision.
Common services associated with Hospice include; Medical Doctor (MD), visits from a registered nurse (RN), Certified Nurse Aides (CNA’s), Social Workers (SW), Spiritual Advisers, and sometimes community volunteers. In general, the Hospice Doctor visits infrequently for face to face visits. The doctor’s role is more of a distant coordinator of care. It is the nurse who visits 1 – 2 times a week (more if necessary) and provides the clinical assessments and communicates the information to the hospice doctor. Once you are on a Hospice program you will likely have to sever your relationship with your own doctor. Of course, many older doctors who have long standing relationships with families will continue to see the patients without pay from Medicare. However, increasingly there is a lower expectation for that level of continuity of care with one’s primary care doctor.
CNA’s provide assistance with personal care, like bathing and dressing, but only for an hour per day a few times a week but are not able to provide all of needed custodial care required to care for a person in the last stages of life. The family is responsible for providing the direct assistance with personal care needs during all other hours of the day & night. Often, families are not physically able or do not have the time due to their own work schedules to provide the extra care services that are needed and are forced to pay for additional private in-home services (respite care) through an agency. In these cases, social workers often refer families to Residential Care Homes who are equipped and experienced to provide the additional 24 hr care and support that is often needed at more affordable costs
Hospice Care Costs
Hospice is a benefit paid and provided through part of Medicare the Medicare hospice benefit. Other private insurance companies may or may not offer a Hospice benefit. Once you sign up for the Hospice benefit, you are no longer able to use you traditional Medicare or Advantage Medicare benefit for your health care needs. Hospice Programs get paid from the Medicare Hospice Benefit which is a lump sum amount. They get paid the same amount per day regardless of the number of hospice staff that visits you. Hospice is required to provide all of the services one receives within that lump sum budget; visits from RN, CNA’s, SW, Spiritual Advisers, Medications, supplies (diapers, gloves) and medical equipment.
The Hospice benefit covers services of the Registered Nurse (RN), Certified Nurses Aid (CNA), Social worker (SW) and Spiritual Advisers. Supplies such as diapers, gloves, wipes and medical equipment are also covered but type and the amount are based on the hospice companies own formulary of covered items. These are benefits to many people that traditional Medicare and Advantage Medicare do not provide and are common reasons that people choose hospice as opposed to traditional Medicare or Advantage Medicare.
“Comfort Medications” like pain medications or medicines that provide relief of uncomfortable symptoms are covered through the hospice benefit, but Medications for other conditions like diabetes, hypertension etc. are usually not covered. These medications continue to be covered under your Medicare part D coverage, as they were in the past.
Once you are enrolled in Hospice you no longer have access to any other health care services, such as your private doctor or specialist doctors- cardiologist, eye doctors and others. There is an option for Primary care doctors to bill and use a “Hospice Care Modifier” but many doctors are not familiar with this. Restorative services such as Physical Therapy, Medical testing or Laboratory testing are usually excluded as well, except in rare cases
Maximizing Hospice Care
Hospice can be a good choice when one has reached the last stage of life. It helps the family come to terms with the reality of their loved one’s condition. But even with a Hospice program many people need more support and continuity of care. Having a trusted, well developed care team that have the ability to provide all levels of care and continuity of care, before the need for hospice arises makes the transition much easier because the relationships and trust between the team members has already been established, reducing the amount of stress and anxiety during this difficult transition period.
At TLCSR, we believe taking the time to set up the right care team and building trusting relationships with all members of the care team, will help to make the last chapter of life the best it can be by providing comfort, support and peace of mind, not only to the person receiving the care but to the whole family