Palliative Care vs. Hospice Care

What to Know Before You Need to Know

By Linda Barnes

The terms palliative care and hospice care are sometimes confused. This confusion is understandable— both types of care focus on the comfort of a patient with a serious disease. In fact, hospice care is actually a form of palliative care that is reserved for the final stages of a terminal illness. Families are encouraged to learn about palliative care and hospice care before the need arises. It is good to know whether insurance or Medicare pays for such services and what limitations might come into play.

Palliative care focuses on the comfort and well-being of a patient with a serious disease while treatments to cure or extend life are pursued. Diseases might include heart disease, kidney failure, stroke, cancer, dementia, lung disease, cystic fibrosis, Parkinson’s, or end-stage liver disease. Since palliative care is a more recent concept, not everyone is familiar with its advantages. It can be extremely helpful to a person who is experiencing a serious medical condition, allowing them to live well despite their illness.

A palliative care team may include doctors, nurses, social workers, chaplains, or others to add support to and complement ongoing care. One needn’t wait—in fact, shouldn’t wait—until physical or emotional pain is extreme before seeking palliative care.

Hospice care is a form of palliative care reserved for the final few weeks or months of a terminal illness. With hospice, curative treatments are discontinued, and care is focused on relieving pain and other symptoms to ensure the patient’s comfort. This can be a difficult time for caregivers, as well. Hospice not only helps ensure the patient’s comfort but lends much needed support to caregivers.

Palliative care may be initiated when a patient is hospitalized due to a serious medical condition in a facility with its own palliative care team. In other cases, a patient may be referred for palliative care upon release from the hospital, whether they are going home or to a care facility. If a referral hasn’t been made, a patient can ask one of their physicians to do so.

Typically, the first stage in palliative care is to create a care plan that, along with treatment, might involve the patient’s primary care doctor plus any specialists and PT or other therapists involved in their care. Next, care begins with pain and symptom management. The emotional needs of patient and caregivers are addressed. This early-stage care could last quite a long time, especially if treatment is helping.

At some point, if treatment is no longer effective and the disease is terminal, then palliative care may transition to primarily comfort care and planning emotionally for the end of life. Finally, when the physician determines that death is likely within the next six months, hospice care will be offered.

Four levels of hospice care are generally recognized: routine home care (patient is stable and pain or symptoms are under control), general inpatient care (for short-term treatment of uncontrolled pain or symptoms), continuous home care (for short-term treatment of uncontrolled pain or symptoms), and respite care (when caregivers need a break).

The patient’s wishes are paramount, but they often want guidance from loved ones or close friends. A trusted physician or hospice team member can be helpful, as well. When my father, who had lung cancer, felt uncertain about starting hospice care, a hospice worker explained that he could choose to leave hospice and return to treatment if his condition stabilized. It’s so helpful to consider issues in advance of the actual need—you might also benefit from putting them in writing.

Several online resources can assist in finding or selecting palliative or hospice care. My father’s oncologist recommended a hospice provider and set up an appointment for us. To explore more options, medicare.gov has a provider comparison. For palliative care, getpalliativecare.org has a directory. Just plug in your zip code.

When families are unable to care for a loved one, in-home care services can assist with personal care, preparation of meals, light housekeeping, transportation, or someone to run errands. Ask friends or health professionals for recommendations.

If home hospice care is not feasible, a care facility may be the answer. Many towns now have a facility dedicated specifically to hospice care. Check for accreditation and the availability of doctor or nurse. Consider any special needs of the patient. There may be local services that specialize in guiding your search for a good facility for your loved one.

Palliative and hospice care are all about improving quality of life. Shouldn’t it begin sooner rather than later?

Sources for this article includes: nia.hih. gov, medicare.gov, mayoclinic.org, and ncbi. nim.nih.gov.