Palliative care at home: what it is, what happens and when to ask

Palliative care is often misunderstood. Many people hear the words and think of hospice, or of giving up. It’s neither. Palliative care is specialized medical care for people living with a serious illness, focused on relief from the symptoms and stress of the illness, with the goal of a better quality of life for the person and the family.¹ It’s appropriate at any age and at any stage of a serious illness, and it can be given along with treatment meant to cure.¹ This note explains what palliative care does, what it looks like at home, what the research shows and when to ask for it.

The short answer

• Palliative care is for any stage of a serious illness, alongside the person’s other treatment.¹
• It treats symptoms like pain and fatigue, and helps with the emotional, spiritual and practical weight of illness, for the family too.²
• It can be given at home, in a hospital, in a clinic or in a long-term care facility.²
• In a landmark study of advanced lung cancer, early palliative care improved quality of life and mood.³
• Private insurance usually covers it, Medicare Part B covers some services, and in California, Medi-Cal managed care plans must cover it for members who qualify.^2,4

What palliative care does

A palliative care team looks at the whole person and the whole family. The National Cancer Institute describes the range of issues it can address:²

• Physical symptoms, such as pain, fatigue, breathlessness, nausea, poor appetite and trouble sleeping
• Emotional and coping needs, for the person and the people caring for them
• Spiritual concerns, whatever the person’s faith or none
• Caregiver needs, because the people giving care carry a heavy load too
• Practical matters, like financial, legal and insurance questions

It also makes room for the big conversations: what matters most to the person, what they’re hoping for, what they want to avoid, and how their care can match it. That’s where advance care planning happens.

The team works together with the person’s other doctors.^1,2 Nobody has to give up their oncologist, cardiologist or primary doctor to get palliative care.

What it looks like at home

Palliative care can be given at home.² At home, it usually starts with a visit from a nurse, a nurse practitioner or a doctor, often with a social worker. They ask about symptoms, go through every medicine, and ask what the person wants from the months ahead. From there, they set up visits on a schedule that fits, and some check in by video between visits.

Most importantly, there’s a team to call. When symptoms flare at night or a decision feels too big, the family has people who know the person and the plan. That can mean a phone call and a change in medicine instead of a trip to the emergency room.

Before the first visit, a little preparation helps the team help you:

• Gather every medicine in one bag, including vitamins and anything bought without a prescription
• Write down the symptoms that bother the person most, and when they’re worst
• List the person’s doctors and their phone numbers
• Write down the questions you want to ask, and who should be in the room
• Find any advance directive or POLST the person already has, so the team can see what’s been decided

What the research shows

In 2010, a study in the New England Journal of Medicine randomly assigned 151 people with newly diagnosed metastatic lung cancer to early palliative care together with their usual cancer care, or to their usual cancer care alone.³

• At 12 weeks, the palliative care group had better quality of life.
• Fewer had symptoms of depression: 16%, compared with 38%.
• Fewer received aggressive care at the end of life: 33%, compared with 54%.
• And they lived longer: a median of 11.6 months, compared with 8.9.

The National Cancer Institute notes that the American Society of Clinical Oncology recommends palliative care for all patients with advanced cancer.²

Palliative care and hospice

Hospice is a kind of palliative care for the last months of life. It’s for someone whose doctors expect the illness to run its course in six months or less, and who chooses comfort care over treatment to cure it.⁵ Palliative care doesn’t wait for that point and doesn’t ask anyone to stop treatment.

Under Medi-Cal, a member on palliative care can move to hospice when they meet the hospice criteria, and adults 21 and older can’t be enrolled in both at the same time.⁴ When one organization provides both, the move can happen without starting over somewhere new.

When to ask

You don’t need to wait for a crisis. Palliative care can start at diagnosis.² Good times to ask:

• A serious illness has just been diagnosed, or has gotten worse
• Symptoms keep coming back, or treatment side effects are hard to bear
• There have been trips to the emergency room or hospital
• A hard decision about treatment is coming
• The family caregiver is worn out
• Nobody has asked the person what matters most to them

How to get it

Ask the doctor who treats the illness for a palliative care referral.² If the person has a Medi-Cal managed care plan, call member services and ask about the plan’s palliative care program and who provides it.⁴ Our note on Medi-Cal palliative care explains who qualifies.

You can also call us. HealthView provides palliative care and hospice across Los Angeles, Orange, Riverside and San Bernardino counties. We’ll talk through what’s happening, check whether the person qualifies under their coverage, and work with their doctor.