When older adults and people with terminal illnesses are dying, they may need a lot of care. This care can last from days to months, and it will look different for everyone depending on their needs.
End-of-life care can be medical and physical, but it can also look like emotional or spiritual support. It often involves making treatment or legal decisions with or on behalf of the dying person. Family and friends of the person who is dying may need support, too.
This can be a lot to manage. The National Institute on Aging (NIA) has information to help you plan end-of-life care for yourself or a loved one.
What does end-of-life care involve?
End-of-life care may involve a team of doctors, nurses, palliative or hospice staff, counselors, and religious community members. People who are dying generally need care in several areas:
- Physical comfort. The person may experience pain, breathing problems, skin irritation, digestive issues, fatigue, or temperature sensitivities. These symptoms can be hard to manage, so ask their health care provider how best to relieve them.
- Mental and emotional needs. Be present with the person. Try to set a comforting mood by playing music, reading, or holding hands if they wish. A counselor with experience in end-of-life emotional issues can give you advice.
- Spiritual needs. Many people find solace in their faith at the end of life, while others may struggle with spiritual beliefs. Talking, praying together, or listening to religious music can help.
- Practical tasks. Both the dying person and their caregivers may need help with practical tasks to ensure peace of mind for everyone. This might include big things like personal affairs or small things such as laundry.
End-of-life care can happen anywhere, but common settings are at home, in a hospital, or in a care facility. Each of these options comes with unique costs and equipment needs depending on the type of care.
Not everyone has the chance to decide where they will die, but people who know the end of their life is approaching may be able to prepare. An advance care plan can help loved ones and the patient’s doctor know what care they want at the end of their life.
What if someone doesn’t have an advance care plan or can no longer make decisions for themselves?
If someone is dying but can no longer communicate, a relative or caregiver will need to make decisions about their care and comfort. This can be overwhelming, especially if the dying person’s wishes aren’t known or if multiple family members are involved and do not agree.
Ask yourself these questions:
- Did the person ever talk about what they would want at the end of their life?
- Did they ever express an opinion about someone else’s end-of-life treatment?
- What were their values and what gave meaning to their life? For example, if being close to family or spending time outdoors was important to them, is further treatment likely to help them do these things again?
Talk to their health care provider about treatment options and potential risks and benefits. It’s hard to predict exactly how much longer someone will live or how their condition will progress, with or without treatment. If the person is in a hospital, there may be an on-site palliative care professional or counselor who can help.
Talk with their doctor about hospice care if they predict your loved one has six months or less to live. Doctors and hospice providers can also tell you what to expect over the coming hours, days, or weeks.
If hospice care is considered, find out how hospice staff will coordinate care. Check whether health insurance, Medicare, or Medicaid covers it. Although hospice staff provide a lot of support for someone who is dying, family or caregivers often provide some day-to-day care.
What to know about end-of-life care for someone with dementia
End-of-life care for someone with Alzheimer’s disease or a related dementia can be uniquely challenging. Dementia is terminal (ends in death), and its progression is often unpredictable. The signs of the final stages of dementia may include:
- Being unable to move around on one’s own
- Being unable to speak or be understood
- Eating problems, such as difficulty swallowing
If someone with dementia can no longer make decisions about their health care, their family or caregivers may need to decide on their behalf. Decision-makers should weigh the benefits, risks, and side effects of any treatment. In some cases, these decisions may be based on the person’s comfort rather than trying to extend their life or maintain their abilities for longer. It can be hard to give someone emotional support in this stage of their illness, but it’s good to maintain whatever connections you can.
Alzheimers.gov has more information about making end-of-life care, financial, and other crucial decisions for someone with dementia.
