Considering hospice care for a loved one or yourself can feel scary and overwhelming. Often, these feelings are heightened by common misconceptions about hospice care. In reality, receiving hospice care can be a positive, supportive experience for both patients and families.

In a lot of cases, calling hospice is the best kind of care you can give them at that time, the comfort measures administered by hospice care workers can manage pain and other symptoms very well.

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What to Expect from Hospice Care at Home

AVATAR communicates with the patient’s physician and our hospice physician to discuss medical history, current physical symptoms, goals of care, preferences for end-of-life care and life expectancy. Many other components of hospice care will quickly fall into place: 

• Necessary home medical equipment will be delivered
• Medications related to the diagnosis will be delivered to the home. 
• The hospice team’s chaplain and social worker will arrive to provide emotional, psycho-social and spiritual assessments that support the plan of care. 
• Individual members of the team will coordinate and schedule regular visits. Some will visit daily, while others will visit weekly, when requested or as needed.   
• You will receive information about how to manage symptoms and how to contact AVATAR if you have a question, if you require acute care, if there’s a crisis, or if you need to see a member of the team. 

Common Myths About Hospice

1. Hospice is a place.

Many people think that hospice is a place you go, but 97% of hospice care is delivered in the comfort of the patient’s home. Generally, patients are only admitted to inpatient hospice care if their symptoms can no longer be managed at home. In the inpatient setting, highly skilled nurses can provide more intensive, 24-hour care to get pain, restlessness, hallucinations, breathlessness, nausea or anxiety under control, so the patient can return home.

2. Hospice care is a permanent decision.

Hospice care can be stopped, changed or paused at any time. Patients and families have the freedom to change their minds and not feel locked into their decision. In fact, it is common for people whose condition improves to stop or pause hospice care, knowing they can elect to use these services again in the future if/when needed.

3. Hospice care is only for the dying.

The focus of hospice care isn’t just to support the patient; it’s also to support the family. During discussions about available hospice services, patients are often surprised when their husband/wife/child reveals they need help too.

4. Other health care stops.

While receiving hospice care, patients continue to receive their other health-care services, such as seeing an ophthalmologist, orthopedist, dentist, etc. All patients need to do is discuss the pending visits with their hospice nurse.

When curative health care is no longer the primary focus, patients often have fewer treatments, follow-up visits and medications (that often have side effects). As a result, patients have more energy to pursue integrative options that promote relaxation and comfort.

5. A do-not-resuscitate (DNR) order is required.

To receive hospice care, you do not need to have a do-not-resuscitate order, commonly called a DNR. Making the decision to have a DNR requires a great deal of discussion with both family members and health-care providers. Making this decision is not an expectation or requirement for choosing to receive the comfort care provided through hospice care. Quality of life is the key focus, and “quality” means different things to different people. With hospice care, patients can explore what quality of life means to them, and whether life after resuscitation is consistent with their definition of quality of life.

Every Medicare-certified hospice provider must provide these four levels of care:

Level 1: Routine Home Care

When a patient enrolls in a hospice program, there is a wide array of services which are to be provided. If the patient does not have symptoms which are out of control and which require Continuous Nursing care, then the patient is placed on the Routine Home Care Level of Services. This level applies whether the patient resides in a facility or in his or her own home. Routine Home Care includes the following:

• RN Casemanager visits
• Social Worker visits as needed
• Chaplain
• Home Health Aide services
• Counselors (Dietitian or other if needed)
• Hospice Medical Director
• Therapy if indicated
• Medications
• Equipment

Level 2: Continuous Home Care

When symptoms go severely “out of control” and the symptoms cannot be controlled by routine home care services with periodic visits and consultation with the physician, if you choose to stay home, the hospice must provide around the clock nursing care in your own home so long as the symptoms remain severely out of control. The idea is that regular adjustments are made in the medications’ dosages, or intervals of administration, or other treatments, to get pain or other symptoms under control. Medication changes are made as well that are aimed at relieving those distressing symptoms. Types of symptoms that might require continuous nursing care at home include uncontrolled:

• Severe pain
• unrelenting nausea and vomiting
• severe bowel impaction/intestinal blockage
• acute “terminal restlessness,” psychosis, or agitation
• bleeding
• acute respiratory distress
• and many other symptoms.

Level 3: General Inpatient Care

When the patient’s symptoms become uncontrolled, hospices are set up to take an aggressive approach to overcoming these barriers to patient comfort. In some instances, the patient may be temporarily placed in an acute care hospital (transferred from his home) if there is no hospice facility.

At this level of care, you can expect individualized attention in an intense and moment to moment assessment of what’s occurring and what needs to be done. There is often very close coordination between the AVATAR hospice staff and the patient’s Attending Physician who together work to achieve patient comfort. Medications may be changed or dosages may be adjusted, or ways of administering medications may be changed to attain an optimum effectiveness of the medications: all geared to helping the patient to be comfortable.

Level 4: Respite Care

When the patient resides at home and the family has been providing much care for the patient, exhaustion may set in, and the family needs “a break.” That’s what respite care is all about. The patient is temporarily placed in a facility so that the family can get rest from the seemingly never-ending list of things to do which are part of the patient care routine.

Respite care is also a required service, which means that if the patient is willing and the family needs it, the hospice must provide a placement in a facility for the patient up to 5 days, after which the patient is transferred back home.