GoodRx Guide
End-of-Life Care: Your GoodRx Guide
What is end-of-life care?
End-of-life care is support for someone who is no longer trying to cure a serious health condition. It includes physical, emotional, and spiritual care.
End-of-life care is sometimes called “comfort care.” That’s because the goal is to ease pain and other symptoms. It also helps a person focus on relationships and other goals at the end of life.
For some people, end-of-life care may only last for a few hours or days. For others, it may be for months or longer. Often, end-of-life care involves an advanced illness like cancer or heart failure. Or it might be a progressive disease, like dementia, that affects quality of life.
Many people think of end-of-life care as something that occurs only after a long illness or a long life. But it may also be the best option after a sudden event like a large stroke or serious accident.
Types of end-of-life care
End-of-life care happens in different settings. It may be the person’s home or that of a family member or friend. It can also be in a nursing home, assisted living, or hospice facility. Sometimes it occurs in a hospital if the person is likely to die very soon.
Other types of end-of-life care include:
Hospice care: This provides support for someone who is expected to live for fewer than 6 months. The person is no longer pursuing treatments to prolong their life. The focus is helping to manage pain and other symptoms that may occur at the end of life.
Physician-assisted dying (PAD): A healthcare provider prescribes medication that will end someone’s life. The person chooses when and how to take it. There are strict guidelines for PAD, and it’s not legal in every state.
Death doulas: These doulas don’t provide medical care, but they focus on other needs like emotional, spiritual, and practical support.
Respite care: This is short-term help for caregivers.
Palliative care also treats pain and other symptoms that affect quality of life. But it doesn’t have to be at the end of life. Hospice includes palliative care treatments that relieve suffering. But not everyone who receives palliative care is in hospice.
What does end-of-life care look like?
There are a variety of places and people that provide end-of-life care. There are also different forms of care that address the needs of a dying person.
Treating physical symptoms may include:
Pain relief
Help with shortness of breath
Management of anxiety and confusion
Assistance with bladder and bowel needs
Wound care, like soothing skin sores, dryness, or itching
Liquids to help with dry mouth or thirst
Emotional support may take the form of:
Engaging in conversation and creating space to talk about feelings
Providing a quiet presence
Reading or listening to music
Sharing memories
Holding hands or gentle touch
End-of-life care may also mean tending to practical matters. This can include:
Care for family members
Care for pets
Financial matters
Property management
Household-chore concerns
Management of memorial wishes
Spiritual care may involve religion. But it doesn’t for everyone. A person’s spiritual needs may include:
Talking about meaning or purpose
Repairing or affirming relationships
Addressing beliefs and fears about death or an afterlife
Engaging with meaningful people, places, or activities
Practicing rituals or ceremonies
What do caregivers need?
Taking care of another person at the end of life can be meaningful. But it also takes a great deal of physical and emotional energy. Caregivers need help and support for themselves, too.
Supporting a caregiver may mean helping with the needs of the dying person. Or it could be doing other tasks that caregivers have less time for. It’s a good idea to consider your own strengths, limits, and resources in supporting a caregiver.
Outside resources help, especially during a long illness. Respite care provides short breaks for caregivers. Hospice assists caregivers as well as the dying person. A death doula may provide emotional, spiritual, and practical support.
Caregivers are often grieving, even before someone has died. This is anticipatory grief. Sources of help can include family and friends, support groups, spiritual leaders, and counselors.
Does insurance cover end-of-life care?
The cost of end-of-life care may be an added stress — both for the dying person and their caregivers. Coverage of these costs will vary by type of insurance and level of care. An insurance representative or social worker can help you navigate these issues.
In general, services that are fully or partly covered by insurance, Medicare, and Medicaid include:
Medical care
Hospice
Skilled nursing services other than hospice may be covered with add-on insurance benefits. Respite care or household helpers are usually paid out of pocket. Long-term care insurance or life insurance may also cover some of these costs.
Are there ways to prepare for end-of-life care?
It’s hard to talk about death — especially if it involves you or the people you love. But there are ways to plan for the end of life that can make it a less burdensome and more meaningful experience.
Take time to reflect on the things that are important to you. Write them down. Have a conversation with the people you care about. It might feel scary at first. But many people find this helps them feel more comfortable with their own death or the death of someone they care about.
Try to prepare legal forms ahead of time. Keep them in a safe place. Advance-care-planning documents let your family and healthcare team know your wishes at the end of life. These documents might include a:
Living will: This states the kind of medical care you do or do not want in different situations.
Healthcare power of attorney: This legal document names a person or people who can make decisions for you if you can’t make them yourself.
DNR/DNI: A “do-not-resuscitate” (DNR) order means that you do not want treatment if your heart stops beating. A “do-not-intubate” (DNI) order means you do not want to be put on a ventilator.
POLST: A “physician order for life-sustaining treatment” is a medical document from a healthcare provider. It details your wishes and can be used in different places, like the hospital or a nursing home.
Organ/tissue donation: You can sign up to be an organ donor through your state’s department of motor vehicles. Make sure your family members know your wishes.
Resources and support
Thinking about the end of life can be intimidating. But planning ahead and finding support can be a great comfort. Check out resources in your own community, or start by learning more with these resources:
Here are some resources specific to finances:
AARP (long-term care insurance)
To learn more about decision-making, take a look at these resources:
Here are some helpful resources about caregiver support:
Common concerns
Individual lives don’t follow a script. Similarly, the dying process doesn’t follow an exact schedule. But the Hospice Foundation of America shares a few signs to be aware of:
Less speaking and movement
Less awareness of people and surroundings
Little or no interest in food or drink
Less urine and stool
Decrease in body temperature
Agitation, restlessness, or hallucinations
Slower heart rate
Slow or irregular breathing
Changes in skin color
Hospice includes a team of people who attend to the physical, emotional, and spiritual needs of a dying person and their family. Medical providers and nurses work to ensure physical comfort. Social workers coordinate benefits and provide emotional support. And clergy members are available to attend to spiritual needs.
A person may be admitted to hospice if they’re expected to live 6 months or less. It’s impossible to know exactly how long someone will live with a particular condition. But in one large study, nearly 94% of people admitted to hospice died within 6 months. Many family members state they wish they had enrolled in hospice sooner. So, if you have questions, don’t hesitate to talk with your care team or access the resources listed here.
References
American Cancer Society. (2019). What is hospice care?
Bernazzani, S. (2016). Guide to end-of-life care options. The American Journal of Managed Care.
Cancer Council NSW. (2020). Providing emotional support.
CancerCare. (2022). Anticipatory grief: Preparing for a loved one’s end of life.
Ellin, A. (2021). ‘Death doulas’ provide aid at the end of life. The New York Times.
Harris, P. S., et al. (2014). Can hospices predict which patients will die within six months? Journal of Palliative Medicine.
Hospice Foundation of America. (n.d.). Hospice care and resources.
Hospice Foundation of America. (n.d.). Signs of approaching death.
Institute for Healthcare Improvement. (n.d.). The conversation project.
McMorrow, P. (2014). 8 essential questions about respite care. CaringBridge.
National Cancer Institute. (n.d.). End-of-life care.
National Cancer Institute. (2023). Support for caregivers of cancer patients.
National Health Service. (2022). What end of life care involves.
National Institute for Health and Care Excellence. (2015). Care of dying adults in the last days of life.
National Institute on Aging. (2017). How to share caregiving responsibilities with family members.
National Institute on Aging. (2017). What is respite care?
National Institute on Aging. (2022). Different care settings at the end of life.
National Institute on Aging. (2022). Providing care and comfort at the end of life.
The American Bar Association. (n.d.). Living wills, health care proxies, & advance health care directives.
