What is Palliative Care? What is Hospice Care?

It gets confusing when you or a loved one are sick and are required to make decisions about medical care you have never heard of before. Palliative care and hospice are sometimes used interchangeably, but they are actually quite different. Here is an overview. 

Palliative Care

Palliative care programs provide medical care, symptom management, and emotional support to a patient living with a serious or chronic illness such as lung disease, kidney disease, liver disease, heart disease, dementia, HIV, or cancer.  Living with a chronic or serious illness often requires overwhelming adjustments to one’s life and lifestyle. Changes include dealing with debilitating symptoms, managing new medications, treatment plans, and dietary restrictions, finding medical equipment, and orchestrating monthly hospitalizations, lab visits, and doctor appointments. Palliative care programs provide medical guidance and support to address these complex realities. 

When the patient has palliative care support, they can still aggressively treat and focus on curing the disease, which is not the case with hospice. Another important distinction from hospice is that palliative care does not require a six month or less prognosis but rather aims to provide guidance as a chronic or terminal illness progresses over the course of many months or years. 

Palliative care programs vary in scope and offerings. Some programs may include any number and combination of a palliative care physician, nurse practitioner, nurse, or social worker to provide resources, education, symptom management, and emotional support over the course of the illness. 

What assistance you receive is typically dependent on your insurance coverage. Some insurances will pay for a monthly or weekly nurse visit to the home for a limited number of months whereas some palliative care programs may only be available in an outpatient clinic setting. Some insurances will cover palliative care support only for certain chronic illnesses. You can find out what your insurance will cover by asking the palliative care program or checking with your insurance. 

Many hospitals have palliative care physicians available to provide consultations for pain and symptom management and to evaluate the benefits and burdens of treatment. Say a patient has esophageal cancer and is having trouble swallowing, the palliative care team can walk them through the process of deciding whether tube feeding is a good option. They are there to help evaluate the pros and cons of treatment depending on your specific circumstances and goals. 

If palliative care is recommended, the medical team thinks your loved one could benefit from additional support. Continue to gather information and meet with the palliative care team. It could make all the difference in your loved one feeling supported and more comfortable. 

Hospice Care

Hospice, on the other hand, is quite different. Hospice care is also sophisticated medical care offered to patients living with a serious or chronic illness but focuses on end-of-life care rather than ongoing maintenance. The overarching goals of hospice are the patient’s quality of life and comfort rather than curing the illness.

Hospice care is suggested for a number of reasons. 

• The patient has a serious or chronic illness that is in its final stages.

• Treatment for their disease is doing more harm than good.

• There are no further treatment options available. 

• The patient is substantially declining in spite of treatment as seen by losing weight, lack of appetite, weakness, fatigue, or poor quality of life.

To qualify for hospice, two physicians must believe that the patient will likely die in six months or less if they let the disease run its course. They make this determination based on very specific criteria for each specific hospice diagnosis. For example, if a patient has end-stage liver disease, the doctor will look at the health history, specific labs, weight, and appetite. They will also do a physical assessment to evaluate their overall health and determine how much care they need in a day. Their labs must be within a certain range to show disease progression, their weight should show at least a 10% decline in a short period of time, and they must require some type of physical care throughout the day such as help to the toilet or with feeding. 

Starting hospice means the patient is ready to stop curative treatment for their disease and focus on their comfort and the quality of their life. The patient is agreeable to the hospice team providing symptom management wherever they live rather than going to the emergency room or the hospital for their medical care. Of course, each patient and disease process is unique, and there are plenty of nuances, so please ask lots of questions when presented with hospice as an option for your care. 

Generally, Medicare, private insurances, and Medicaid will cover hospice. You can ask the hospice program what your insurance will specifically cover. 

If you decide that hospice is the right path for the patient’s care, this is generally what it will look like. 

You will get assigned a hospice team. 
End-of-life care requires physical, emotional and spiritual support for both the patient and family members. The hospice team includes a physician, chaplain or spiritual counselor, social worker, nurse, home health aide, volunteer, and bereavement coordinator all of whom work together to provide this comprehensive support. All are specifically trained in end-of-life care and the physician and nurses are expertly trained in end-of-life pain and symptom management. The patient can choose to have the physician they are closest to direct their care such as their oncologist or cardiologist, or they can have the hospice physician oversee their care. The patient may not need all of these team members and can certainly refuse any services (except for the nurse). Your team will meet about every two weeks to discuss and coordinate the patient’s care based on what loved ones and the patient desire.

Your hospice team will visit you wherever you live.

Most of the time, hospice care comes to you. 
Your hospice team will visit the patient wherever they live. I have visited patients in their homes, in an RV, in nursing homes, foster homes, and on a very tiny boat. Your hospice team augments the care you already have in place. The team will provide scheduled visits throughout the week, 24/7 advice, and assistance by phone. Nurses are also available to visit anytime for urgent needs, but hospice does not provide 24-hour care. Generally, family and friends provide everyday care. 

For example, the hospice nurse will schedule one to three home visits every week, and each visit may last about an hour. You may choose to have a hospice aide to assist with your shower two times a week, or you may want the chaplain and/or social worker to meet with you weekly. There is a total of seven hours at most each week that a hospice professional is in your home, otherwise the remaining 161 hours are covered by the patient independently or family and friends. 

Most families are surprised they must provide the everyday care. It is helpful if you can mobilize resources sooner than later.

I try to describe this as detailed as possible because most families are surprised that they must provide the everyday care: the meals, the toileting, the bathing, changing the linens, changing the briefs, administering medications. It is a lot to manage, and it is helpful if you can mobilize resources sooner rather than later. 

If you are concerned that your loved one’s care cannot be managed in their home, ask if there are any hospice facilities in their area. Some hospice homes or facilities do exist, however, they may have strict guidelines for entry and may require an out-of-pocket expense. Inquire to determine if any hospice facilities exist in your area and what the requirements for entry are. 

If a physician recommends hospice, the patient has likely had a substantial decline in their health or they are not responding to the usual medical therapies. It may be helpful to meet with the hospice team to gather more information so the patient and their loved ones can make an informed decision about the next steps they want to take. Hospice care can come as a great relief as it provides extra layers of support when your loved one is in their final stages of living with a terminal illness. 


Blessings.