What is palliative care and how is it different from hospice care?

By, Hyunjin Noh, PhD, MSW

​Watching a loved one struggling with difficult pain can be a traumatic experience for caregivers and can have a negative impact on their mental health. Many caregivers are unaware about palliative care and how it can help them and their loved one. However, palliative care may be a health care option that benefits your loved one, you, and your family.

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What is palliative care?

Palliative care is a special type of care for patients with chronic or serious illnesses, such as dementia, cancer, and kidney disease. The goal of these services are not to cure illness. Instead, it focuses on improving quality of life by preventing and managing pain and suffering. Palliative care supports the whole person, not just the illness. For instance, it helps with:

• physical health,
• psychological health,
• emotional health, and
• spiritual well-being.

To address all of these needs, palliative care is often provided by a team that includes physicians, nurses, social workers, and chaplains.

How can palliative care help me and my loved one?

​Caregivers often feel stressed about common symptoms of dementia, such as memory loss and confusion. However, palliative care eases other symptoms of dementia that we don’t talk about as much, like:

• pain,
• nausea or vomiting,
• anxiety,
• depression,
• constipation,
• trouble eating or breathing, and
• fatigue.

Many families are surprised about the types of services that are offered through palliative care. For instance, services may help support the caregiver’s mental health in addition to the patient’s needs. They may also help with non-medical issues, like financial distress. 

What is end-of-life care?

​Many families find it uncomfortable to discuss planning for their loved one’s passing and end up putting it off. Palliative care services may include planning, which can make their loved one’s transition easier when it comes. For instance, social workers can assist with important issues, like preparing documents for setting up a living will and health care proxy.  They may also help families with the difficult conversation about end-of-life so caregivers can learn what their loved one’s wishes are and carry out those wishes. Also important, chaplains can provide spiritual support for the patient and caregivers through pastoral care. 

How does palliative care fit in with my loved one’s current care?

Palliative care is often provided in addition to services designed to cure illness, like surgery or chemotherapy. Many families are relieved that this type of care can be provided to their loved one at home. However patients can receive palliative care in other settings, like nursing homes and assisted living facilities. Patients can also keep their primary care provider and specialists while receiving palliative care. In fact, the patient’s current doctors typically work with the palliative care team to manage patient care. 
Health insurance often covers the cost of palliative treatments and medication, though patients may have a co-pay. This includes Medicare and Medicaid. Most private health insurances also include palliative care services with different levels of coverage depending on each plan. How long a patient can receive care depends on their care needs and their insurance coverage. Most patients receive palliative care occasionally and only as they need it. However, many patients receiving palliative care will increase the services they use as their condition worsens. 

Is palliative care the same as hospice care?

​No. Hospice care is offered to patients who are expected to live 6 months or less if their illness runs its normal course. Usually, doctors will refer a patient to hospice when they believe that ongoing, curative treatment is no longer helping the patient and they have reached a terminal stage. To enroll in hospice, the patient must have a terminal diagnosis from their regular doctor and the medical director of the hospice agency. Hospice care may include 24-hour on-call service, home visits, medical equipment, medications, inpatient care, respite care, spiritual care, bereavement and counseling services.
Unlike hospice, patients can receive palliative care at any stage in their disease and while they still receive curative treatment. So, receiving palliative care does not mean that the patient is terminally ill or dying.
There are some ways that palliative care and hospice care are similar, though. Both types of care:

• Manage pain, symptoms, and stress to improve quality of life.
• Are provided by teams to meet the holistic needs of the patient and caregivers.
• Are provided in home, nursing home, and assisted facility settings.
• Are covered by health insurance.

Since patients receiving hospice services are required to have a terminal illness, insurance will not cover curative treatment while the patient is enrolled in hospice care. When enrolling in hospice care, the patient or their legal representative (oftentimes, the patient’s family) will sign a statement choosing hospice care instead of other curative treatments. This is not true for palliative care. It’s important to know that hospice enrollment is reversible and at any time the patience can choose to pursue curative treatment again. In such cases, they can enroll in hospice care again later, if needed. 

What questions should we ask our doctor about palliative care?

If you are a caregiver and feel that your loved one may benefit from palliative care services, talk to their doctor. Here are some questions you may ask them:

• Are you recommending palliative care for my loved one? Why?
• How do I find out if s/he is eligible?
• What is included in palliative care that’s different from the care you can give him/her?
• Who will be part of his/her palliative care team?
• Where will s/he receive palliative care?
• Do I need to check with his/her insurance company about coverage for palliative care?
• How long will his/her palliative care last?
• What will the palliative care team do if his/her symptoms get worse? What if the symptoms get better?
• How will you communicate with the palliative care team and his/her other doctors?
• How are we (family and friends) involved in palliative care?
• What decisions do I or my loved one need to make? Can you be involved in those decisions with us?

​Want to learn more?

You can find more information about palliative care and hospice care at:

• The National Institutes on Health: What Are Palliative Care and Hospice Care?
  
• CaringInfo: Resources for serious illness and end-of-life care decision-making and caregiving
  
• Center for the Advancement of Palliative Care: Alabama
  

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About the Author

Dr. Hyunjin Noh is an Associate Professor at the University of Alabama School of Social Work. She is also a Deep South Resource Center for Minority Aging Research (RCMAR) Scholar. Her research areas include end-of-life care decision making, pain and symptom management in rural communities, palliative care education, and racial disparities in end-of-life care. Her current research projects explore the needs and barriers in pain management in rural Alabama. Dr. Noh collaborates with community leaders for her work and her goal is to implement a statewide palliative care educational intervention tailored for rural caregivers in the state of Alabama.
To learn more about her work, click here.