Post 2: Five Major Ways Palliative Care Differs from Hospice
Updated: Dec 19, 2022
"I have to be honest. I don't know the difference between palliative care and hospice," an internist told me recently.
It is no wonder that so many people confuse "palliative care" with "hospice," especially when medical professionals themselves confuse the two or use the two terms interchangeably. Even our board specialty title is listed as "Hospice and Palliative Medicine."
Palliative care and hospice are NOT the same programs (Read Post 1: What Exactly Does a Palliative Care Specialist Do?). The following describe the major ways in which palliative care differs from hospice (and there may be occasional exceptions to below on a case by case basis).
1. Palliative care is involved when a person is receiving "life prolonging" (such as weekly blood transfusions), "life sustaining" (such as dialysis for end stage kidney failure), or "curative" (such as certain chemotherapy) treatments. Hospice support can begin when a person is no longer receiving "life prolonging"/"life sustaining"/"curative" treatments.
Palliative care specialists focus on developing a treatment plan based on a person's values, priorities, and goals of care, whatever they may be. Goals can range from "I want to be able to walk without anyone's help, even if I have to use the walker" to "I want to make it to our family reunion in Arizona this summer" to "I want Dad to get stronger with physical therapy and nutrition, and if that doesn't work, at least keep him comfortable at home until it's his time. I don't want him to die alone in a hospital."
Achieving a particular goal of care may require continuing “life prolonging” or “life sustaining” treatments, which is possible while a person sees a palliative care specialist.
A person with a prognosis of decades or a prognosis of hours could potentially benefit from a palliative care consultation.
The hospice team will also develop a treatment plan to support a person’s goals of care and priorities, however they are unable to get involved if the goals require continuing “life prolonging” or “life sustaining” treatments. A person with end stage disease is not able to enter a hospice program if they wish to return to the emergency room for lab draws, CT scans, MRIs, intravenous (IV) medications, or any hospital or intensive care unit (ICU) level of medical care. They are unable to enter a hospice program if their priorities include continuing dialysis (there may be exceptions to this in a few situations), artificial or medical nutrition through a feeding tube, IV fluids or medications, chemotherapy, transfusions, or any other medical treatment considered “life prolonging” or “life sustaining."
A person who accepts hospice support at home is saying, "I want to focus on comfort. I want all medical care, specifically focused on comfort, brought to me in my home. Going to clinics is now more burdensome than beneficial. If I start to feel worse, going to the hospital would not improve my quality of life (read Post 23: When to Consider Hospice Support - Example #1)."
(Note, a few but growing number of Medicare Advantage plans are offering an overlap of hospice support for a short time that a person continues "life prolonging"/"life sustaining" therapies.)
2. Any person with a referral can be seen by a palliative care specialist. A person has to meet certain Medicare guidelines in order to receive hospice support.
Any person with a referral from their primary care physician (PCP) or specialist can see an available palliative care specialist. The palliative care specialist evaluates the person to determine if that will be a one time visit or if the person could benefit from more palliative care visits. This process is the same as with any other specialists, such as cardiologists or neurologists.
Any person can receive a hospice education visit from a hospice agency. Any person, family member, friend, or physician can request a meet and greet with a hospice agency.
Eligibility to receive hospice support at home (or nursing home or any place of residence) requires specific criteria per Medicare guidelines, the gist of which are
a. values and goals of care are in line with comfort focus and a desire to have medical care/symptoms management brought to the home without “life sustaining”/”life prolonging” treatments
b. an end stage disease (a person may have an end stage disease diagnosis and still be active and traveling across country at the time of hospice admission) (read Post 25: When to Consider Hospice Support - Example #2) or severe decline in physical condition (such as notable weight loss with decreased eating or notable decrease in alertness or stamina resulting in increased time in bed or wheelchair) (read Post 27: When to Consider Hospice Support - Example #3), indicating an average prognosis of "six months or less" if the person's disease or illness were to follow its natural course
3. Palliative care specialists usually see patients in the clinic or in the hospital. A person in a hospice program has all medical care for symptoms management brought to them to their home.
Like a person would visit the nephrologist or oncologist in their clinic, so a person would visit the palliative care specialist in their clinic. Some palliative care practices offer home visits for those who are especially frail. A person who sees a palliative care specialist continues to see their PCP and specialists.
When a person is admitted into a hospice program, the hospice team becomes the person's entire medical team, wholly focused on relieving uncomfortable symptoms and supporting the person and their family at home. The person no longer sees their PCP or specialists (there may be exceptions to this in a few situations).
4. Palliative care specialists usually keep business hours. Hospice nurses are available 24/7.
Like pulmonologist or nephrologist specialists, palliative care specialists see patients during clinic business hours, or in the hospital as needed for consultations. Some palliative care specialists may take phone calls after hours and on the weekends, similar to other specialists. All urgent issues or emergencies would be directed to urgent care or the hospital.
When a person accepts hospice support at home, the hospice team becomes the person's new 911. If the person were to experience severe shortness of breath on a Saturday night, they would call the hospice nurse instead of the paramedics. The hospice nurse would guide the family and caregivers on controlling the symptom and come to the house if extra help were needed.
When a person accepts hospice support at home, they are saying, "The next time I get really sick or feel ill, I don't want to go to the hospital. I don't want to go through the pokes, the Xrays, the CT scans, the noise. I want someone to help me get through it in the comfort of my home. If they can get me through it, great. If it's my time to die, keep me comfortable in my own home."
5. Usually a person pays a specialist visit copay to see a palliative care specialist. Usually hospice support at home, including medications and equipment, is entirely covered by Medicare Part A or other insurance.
Visits to a palliative care specialist are covered by a person's insurance the way visits to other specialists such as urologists or gynecologists would be covered by the person's insurance.
Hospice support is usually covered entirely by the Medicare Hospice Benefit, Medicaid, or private insurance. When a person accepts hospice support at home, they receive medications for comfort from symptoms such as pain, shortness of breath, anxiety, constipation, and depression. They receive medications for medical diseases that can cause discomfort such as medications for high blood sugar in people with diabetes; medications for encephalopathy in people with cirrhosis; and oral medications for simple infections such as urinary tract infections or pneumonia. All medications for the person's symptoms are covered.
Hospice programs also deliver equipment (such as oxygen and hospital bed), supplies (such as incontinence pads or wound care ointments and gauze), and staff (such as a nurse, aid, chaplain, social worker, or volunteer) to be brought to the home, all covered by the hospice program.
The following are a few ways palliative care and hospice are similar.
Both palliative care and hospice practitioners focus on goals of care/values/priorities conversations, advance directives discussions, symptoms management, and psycho/social/spiritual support for patient and family.
Sometimes a person stabilizes or improves in medical condition, and the person no longer benefits from palliative care specialist follow up visits. A person may decide palliative care is not helpful for them at that time. They could pause with palliative care visits and ask for a re-referral years later.
Similarly, a person could improve while receiving hospice support at home and "graduate" from a hospice program. They may change their minds and decide the hospice philosophy is not the right path for them at that time. They could revoke hospice to resume seeing their PCP and specialists and ask for a hospice re-evaluation weeks or months later.
Just as different internists and specialists have different personalities, unique mannerisms, and practice preferences, so also different palliative care teams and hospice programs have different personalities, ambiances, and practice preferences. A person can “interview” or “try out” different specialists or hospice agencies to find the best fit for them.
(I clarify common misconceptions about hospice in Post 56: Debunking Common Myths about Hospice - Part 1 of 2 and Post 57: Debunking Common Myths about Hospice - Part 2 of 2.)