HOSPICE VS. PALLIATIVE CARE
Because they are often confused, let's review the difference between Palliative care and Hospice. Hospice is fairly straight forward. Once a doctor claims a patient has six months or less to live, the patient is eligible for Hospice care, if desired. When a patient elects to go on Hospice, Medicare assumes nearly 100% of care costs, including durable medical equipment (DME), medications, and nursing/physician visits. There are many companies that assist with Hospice management, which can be done at home, in a hospital, or even in a nursing home setting.
Palliative care is specialized medical care for patients who are not terminal, but may have a life-limiting illness (e.g Huntington's Disease), or an illness with significant debility and pain (e.g. Autoimmune Scleroderma). The ultimate goal for Palliative care management is to improve a patient's quality of life.
Unlike Hospice, patients are not required to have a terminal diagnosis. Palliative care can be used to manage symptoms that could otherwise overwhelm a patient's life, such as chronic pain; limited mobility; generalized decline; mental stress/depression; sleep disorders; connective tissue pain; treatment side effects of medication (e.g. chemotherapy); and countless other conditions caused by major, chronic illness.
At RSHC, we believe both Palliative care and Hospice are essential to quality patient care. Yet, we do not (at this time) offer exclusive Hospice services. There are multiple reasons for this - as noted below - but we do offer something we believe to be better, called our Comprehensive Home Palliative Service (CHPS).
It is often assumed all Palliative care patients are eventually advanced to Hospice care once the life-limiting disease begins to show signs of rapid and unavoidable progression, such as rapid metastatic disease from cancer. However, many patients live with their chronic illness for many years without needing Hospice, while others may die before ever qualifying for Hospice.
Once on Hospice, however, the patient generally forgoes future life-saving treatments. As an example, consider an end-stage COPD hospice patient with pneumonia. In his case, the Hospice team assists with comfort and air hunger relief, not on hospitalization or antibiotics.
It is important to note RSHC does not do traditional Hospice care. There are several reasons for this:
- Dealing with (and getting paid by) Medicare can be a nightmare. While Medicare is a bear even on its best days, it can be particularly difficulty to meet their criteria for Hospice care for reimbursement.
- Hospice teams (generally predetermined by one's insurance card) takes over your care. They often fail to get to know the patient personally. That is not true of all Hospice companies, of course, but the interactions between patient and Hospice provider are usually not the same as those between a patient and his or her primary care doctor.
- Traditional Hospice is associated with: greater expenses; recurrent ER and hospital admissions; and a decreased chance of dying according to the patient's wishes (e.g. dying at home). In one study*, almost half of the traditional hospice patients died in the hospital.
- Hospice care is usually decided by a physician. Often, it is recommended far too late,* usually because a terminally ill person is admitted to the hospital. He or she may be so sick that the patient dies in the hospital, or is discharged to a Hospice House only to die several hours to days later.
- Despite Hospice's focus on pain relief, one study showed up to 62.6% of end-of-life dementia caregivers believed their loved one was in pain either "often" or "all the time.*" This was often due to the lack of family education. Additionally, traditional Hospice programs tend to send nurses to patient homes when a patient is in distress, rather than teaching medication and behavioral self-management techniques to family well in advance.
- Traditional Hospice does not focus on caregiver burnout or caregiver health, which we now know is severely impacted* by the in-home management of the chronically ill.
Sadly, the Hospice model is vastly underused in our country. And when it is used, it tends to be initiated by a physician's needs rather than the patient's.
Currently, three-in-ten adults serve either full or part time as family member caregivers.* As our population continues to age and the elderly grow in number, caregivers face more demands than ever before (such as having to assist multiple family members at the same time). Today's caregivers represent a massive, hidden workforce in America. Caregivers are essentially invisible in American society. This lack of acknowledgement means caregivers are often under-trained and - when compared to non-caretakers - suffer significantly higher levels* of physical, emotional, and financial stress for their hard work.
You may be wondering, If RSHC doesn't offer traditional Hospice care, how can they help me?
Rather than follow the traditional Hospice model (which has the flaws mentioned above), we created a new model for end-of-life care called the Comprehensive Home Palliative Service (CHPS). This program is extremely generous regarding the services it offers, and is designed for those patients who do not yet qualify for Hospice, but are starting to sense the end of the road. Patients may also opt to remain with CHPS until the end of life, without ever transferring to Hospice (we fully support either decision and assist patients with making the correct choice for their needs).
As an example, consider a patient with end-stage COPD; he's been admitted to the hospital three times in the last year, and he's realized he's likely a single case of pneumonia away from facing ventilator treatment. If he does not wish to be ventilated (but would still want antibiotics for treatment of a mild case at home), he could become a member of CHPS. Our program is designed to help patients avoid the ER and/or hospital admissions, while also preparing the patient (and family) for what's to come. The following link provides more information on CHPS, and a complete listing of how we ensure a patient's final year of life is one of quality and peace.
Dementia is an absolutely horrible disease. We all fear it, though most of us try not to think about our chances (or that of our parents) of being diagnosed with it. This kind of fearful avoidance is a shame, because America is particularly bad at caring for its elderly, yet alone elderly patients with dementia. Equally worse, America is scandalously irresponsible at providing the education, help, and respite care so desperately needed by dementia caregivers.
* Schulz R, Mendelsohn AB, Haley WE, Mahoney D, Allen RS, Zhang S, et al. End-of-life care and the effects of bereavement on family caregivers of persons with dementia. N Engl J Med. 2003; 349(20): 1936-1941.
* IOM (Institute of Medicine). 2015. Dying in America: improving quality and honoring individual preference near the end-of-life. Washington, DC. The National Academies Press.