Hospice care has had a long history of providing care to people at the end of life. But along with the valuable care and comfort hospice offers, there is a great deal of misunderstanding about how hospice works, who it is for, and the different levels of care.
Jump ahead to these sections:
- Why Does Hospice Have Different Levels of Care?
- The Four Levels of Hospice Care Explained
- How Do You Choose What Level of Hospice Care for a Loved One?
Confusion about hospice arises from several sources, some from patients and families themselves as they grapple with the emotions of death and dying. Other misconceptions come from not understanding how insurance pays for hospice and how insurance coverage drives and approves care.
The dying process is not necessarily a solid step-by-step process but rather a very individual journey of decline, occasional short-term recovery, punctuated with several medical crises. Hospice care is not 24-hour care except in a hospital setting, and you must meet specific criteria for that level of care.
When starting hospice care, ask questions about what you can expect, so you will be better prepared. We will walk through the various levels of care, where they occur, and when your loved one can access them.
Why Does Hospice Have Different Levels of Care?
Hospice has different levels of care because each person has different levels of need. Although most people prefer hospice at home, there are other hospice options that might be necessary to take care of the patient, either long-term or short-term.
Suppose your loved one is considering hospice or has already started. In that case, it is wise to familiarize yourself with the different levels of care so you can advocate for increasing care when necessary. In the typical home hospice scenario, a nurse will come for about an hour two to three times a week- not nearly enough time to properly evaluate your loved one’s needs.
Hospice health providers are incredibly skilled at what they do, but as a family member, you are the eyes and ears that can inform hospice staff about changing needs. Don’t be afraid to discuss your observations and questions about your loved one’s care and ask about a higher level of hospice.
The Four Levels of Hospice Care Explained
In an ideal world, your loved one would be at home receiving the comfort care they need from hospice until they have a peaceful death. This does happen for some people, but more often, there is a gradual decline where care needs become more complex until the very end, when care becomes more stable.
Your loved one may need one, two, or all of these levels of care at some point while they are on hospice. Or, your loved one may go from one level to another and back again to the first level until death.
1. Routine hospice care at home
Home is wherever the patient is. Home could be your primary residence, assisted living, memory care, independent senior living, or a nursing home. All hospice services are brought to the patient wherever they reside. A nursing home might provide hospice in a designated hospice wing of the facility. Typically, routine home care is the first step if someone starts hospice soon after receiving a terminal diagnosis. Services include:
- A physician is a person who oversees care and orders medications. A physician order is required for hospice services to begin and for Medicare to pay. Every hospice company has a medical director who is a physician. Most people choose to give up their primary care physician and defer all care to the hospice medical director.
- Nursing care is at the heart of hospice. The nurse does the initial assessment and creates the plan of care involving all other disciplines. The nurse orders durable medical equipment and makes medication recommendations. A nurse usually comes to the home two-three times a week or when needed during emergencies. A nurse is available 24 hours a day for emergencies.
- Physical and occupational therapy on hospice care is different from home health. The goal is not recovery but safety and comfort. For example, the therapist may teach your loved one how to transfer safely or recommend durable medical equipment like a toilet riser.
- Aide services support your loved one by helping with dressing, bathing, transfers, and hygiene. Aides usually come two to three times a week and won’t usually do any tasks like housekeeping, cooking, or cleaning. Medicare does not pay for an aide to perform tasks except personal care.
- The nurse recommends pain medications and will also suggest discontinuing some medicines that may be unnecessary.
- A social worker is available for short-term counseling, resource referral, and grief counseling after death. The social worker is generally someone who responds when the family indicates a need.
- Durable medical equipment and supplies are an important part of hospice care. As your loved one declines, getting a hospital bed and alternating air mattress, a walker, briefs, oxygen, or other equipment may be necessary to keep someone safe and comfortable.
- Spiritual support for your loved one and the family is available from every hospice company. You may have your preferred spiritual or religious preference, but if you don’t, there is a non-denominational chaplain available for comfort, counsel, and support.
- Nutrition counseling and services help your loved one if they have special dietary needs. For example, someone may need a modified diet due to swallowing problems or require a diabetic diet.
Hospice tailors routine care to meet the individual needs of the patient and family, so there is some variability in scheduled visits. A nurse is available 24 hours a day for emergency or urgent situations.
2. Continuous hospice care
Continuous hospice care is used only during a crisis, for a brief time, to ensure that symptoms are under control. Continuous hospice care allows the family a short period of respite while the hospice team takes over for round-the-clock care, and the nurse may stay overnight to monitor symptoms. The nurse is the person who provides at least 50% of the care, and the types of symptoms that could qualify might include:
- Significant pain that is not controlled with standard prescribed medications
- Uncontrolled bleeding
- Continuous nausea and vomiting
- Agitation and restlessness that can’t be controlled under routine care
- Respiratory distress
- Severe anxiety
If your loved one’s symptoms are under control, they will not qualify for continuous hospice care. Unfortunately, personal care needs are also not eligible for constant hospice care. If your loved one needs more help with activities of daily living than hospice can provide, the family will need to step in, or you can hire private caregivers. The unavailability of continuous care except under specific circumstances can surprise families since this puts a lot of pressure on family caregivers.
3. Inpatient hospice care
If continuous hospice care is unable to get symptoms under control, the nurse may recommend inpatient hospice. The goal of general inpatient hospice (GIP) care is to get the patient’s symptoms under control with the availability of round-the-clock care and return the person home.
Inpatient hospice care needs to be coordinated through the hospice provider so that that hospice is not interrupted. Care is provided in a freestanding hospice facility, the hospice wing of a hospital or skilled nursing home. For Medicare to pay for inpatient hospice, the transition needs to be facilitated by the hospice company with an order from the medical director. Some of the symptoms or conditions eligible for GIP are:
- Severe open wounds that require more attention and care than can be provided by routine or continuous care.
- Seizures, extreme nausea, and vomiting, or bleeding
- Uncontrollable pain that requires an IV or careful monitoring of dosing
- Severe delirium
4. Respite care
Most of the care for a hospice patient is provided by the family, who fill in the gaps, leading to caregiver stress. Medicare allows your loved one to stay a short period of time in the hospital or other Medicare-approved hospice facility to give you a much-needed break.
Respite care is limited to five days, at which time your loved one must return home. You can have more than one respite care episode per year. Respite care is not available if your loved one is in a nursing home. During the respite, the family can go out of town, attend an important event, or just take a break from the demands of caregiving. There are no restrictions on the reason for requesting a respite.
How Do You Choose What Level of Hospice Care for a Loved One?
The fact is you may not be able to choose the level of hospice care for your loved one, but you can advocate for the level that seems most appropriate. By asking for another level of care, the hospice medical director can evaluate your request and state that the new level of care is required. Talk with the hospice nurse about what you observe. Keeping track of symptoms is a good way to make your case. Pay special attention to:
- Pain that doesn’t seem to be managed even with consistent medication
- Constant nausea and vomiting
- Agitation, anxiety, and irritability that is unrelenting
- Wounds that aren’t healing with routine care
- Delirium which is characterized by confusion, distraction, memory problems, incoherent speech, hallucinations, fatigue, and personality changes
- Caregiver stress that is impacting you or your family’s ability to care for your loved one. If you need a break, it can be hard to ask for one, but your health and well-being are valuable too.
Four Levels of Hospice to Take Care of Your Loved One
End-of-life care is hard enough without having to cope with making sure your loved one has the care they need. Knowing the four levels of care gives you options. Continuous round-the-clock care is not available for the long term through hospice, but there are ways to provide the comfort and care your loved one deserves.