How palliative care helps the family, too

A serious illness happens to a whole family. Someone drives to appointments, someone learns the medicines, someone lies awake doing the math on time off work. Palliative care is built for that. It treats the discomfort, symptoms and stress of a serious illness, and it supports the family as well as the patient.¹ This note covers what that support looks like, how to use it, the caregiver training Medicare pays for, and the time off work the law allows in California.

The short answer

• Palliative care supports the family as well as the patient, including emotional support.¹
• Palliative care specialists can help families and friends cope, and help with practical worries like money, insurance and work.²
• Medicare pays when practitioners train a caregiver to help carry out the patient’s treatment plan, for illnesses like dementia.³
• California Paid Family Leave pays benefits for up to 8 weeks in a 12-month period to care for a seriously ill family member, but it doesn’t protect your job.⁴
• Job protection comes from the federal FMLA and California’s CFRA, each up to 12 workweeks in a 12-month period for eligible workers.^5,6

What the team does for the family

Every palliative care team is different, and it may include doctors, nurses, social workers, spiritual advisers, pharmacists, nutritionists and counselors.¹ The National Cancer Institute says palliative care specialists can help families and friends cope and give them the support they need, and can help with financial, legal, insurance and work concerns.²

In practice, that can mean people to call: a nurse for a symptom, the social worker for a form or a hard conversation, a chaplain when the questions are bigger than medicine.

Ask for a family meeting

One meeting with the team, with everyone who helps, saves a lot of repeating. Add a phone or video line for the people who live far away. Bring the questions that keep coming up at home, and leave with a plan for who calls whom, and when.

• What should we expect over the next few weeks and months?
• Which changes mean we should call, and which can wait?
• Who on your team do we call, day and night?
• What can the family do that would help most?
• What help is there for us, the caregivers?

Learning the care

Since 2024, Medicare pays when practitioners train caregivers to support patients with certain illnesses, like dementia, as part of the patient’s individualized treatment plan or therapy plan of care. Doctors, nurse practitioners, physician assistants, clinical nurse specialists and clinical psychologists can provide it, and so can physical and occupational therapists and speech-language pathologists.³ Ask the team whether the person’s plan includes it.

Time off work in California

Paid Family Leave pays benefits for up to 8 weeks in a 12-month period to someone caring for a seriously ill family member. The weekly benefit runs from $50 to $1,765. It pays, but it doesn’t protect your job.⁴

The federal FMLA lets an eligible worker take up to 12 workweeks in a 12-month period to care for a family member with a serious health condition. The leave may be unpaid, and the employer keeps group health benefits going. It applies to private employers with 50 or more employees, and the worker needs 12 months on the job and 1,250 hours in the past year.⁵

California’s CFRA reaches further: it covers employers with five or more employees and gives up to 12 workweeks of job-protected leave in a 12-month period, with group health benefits continued. It covers care for a child, spouse, domestic partner, parent, grandparent, grandchild or sibling. Employers don’t have to pay during the leave, though some do.⁶

Talk with your employer’s HR team about how the three fit together for you, and with the palliative care social worker about the paperwork.

Looking after yourself

The person giving care needs care too. The National Institute on Aging lists the signs of caregiver stress: feeling exhausted, overwhelmed or anxious, becoming easily angered or impatient, feeling lonely or disconnected from others, and trouble sleeping.⁷

Its advice is practical. Ask for help, starting with small things if that’s easier, since many people want to help and it feels good to them to contribute. Take a break when you need one. Keep your own doctor’s appointments, and tell your doctor you’re a caregiver. Aim for seven to nine hours of sleep a night.⁷

Respite care gives a caregiver short-term relief, for a few hours or for several weeks, at home, in a care facility or at an adult day center.⁸ The palliative care social worker can help you find it nearby. If the person later moves to hospice, Medicare covers most of the cost of up to five days in a row of respite care in a hospital or skilled nursing facility.⁸

When to ask

It’s never too early to start palliative care if you have a serious illness.⁹ It can begin at diagnosis and continue alongside treatment.² Palliative care at home explains how to get it, and Who pays for palliative care covers the costs.