What happens at a palliative care visit, and how to get ready

A first palliative care visit can feel like a big step, and many families aren’t sure what to expect. The visit is mostly a conversation, and its goal is to clear up any confusion about the person’s care.¹ This note explains who you’ll meet, what they’ll ask, what to bring, what happens afterward, and the questions to bring with you.

The short answer

• The core palliative care team usually includes doctors, nurses and social workers, and family members are welcome at every meeting.¹
• The first visit starts with the person’s story: the symptoms, how the illness affects their life, and their fears.¹
• Bring a list of symptoms, every medicine and supplement, any advance directive, and a family member or friend.²
• The team works in close partnership with the person’s other doctors. Nobody gives up their own doctors to get palliative care.¹
• You don’t have to be at the end of life, or in hospice, to have palliative care.³

Who you’ll meet

The core team typically includes palliative care doctors, nurses and social workers.¹ Depending on the team, you may also meet nurse practitioners, physician assistants, chaplains, pharmacists or music therapists.² The first meeting may happen in the hospital or an outpatient clinic,² and palliative care can also be given at home.⁴ Palliative care at home explains how home visits work.

What the first visit covers

The Center to Advance Palliative Care describes five things to expect from a first meeting:⁵

• How the team can help. They explain their role, and the conversation often starts with what the person already knows about palliative care.
• Time for questions about palliative care, the illness and the treatment options, at this meeting and every one after it.
• The person at the center. The team wants to hear the person’s story, how the illness affects their life and what they fear.
• A seat for the family. Family members or other support people are welcome, and can be part of decisions if the person wishes.
• Everything explained. The team works with the other doctors so the person understands the illness and its symptoms.

Expect questions about symptoms and current treatments, how the illness is affecting the person and the family, and what matters most to them. From there, the team helps with decisions that fit the person’s values and goals, and together you make a plan to ease symptoms and make daily life better.²

What the team can help with

It helps to know the range before the visit, so nothing gets left out. The National Cancer Institute lists what palliative care can take on:⁴

• Physical symptoms, such as pain, fatigue, loss of appetite, nausea, shortness of breath and trouble sleeping
• Emotional concerns, such as depression, anxiety and fear
• Spiritual questions about beliefs and values
• Practical matters, such as money, insurance, work, goals of care and advance directives
• The family’s own strain, since the people giving care can be overwhelmed and their health can suffer

How to get ready

A little preparation helps the visit go further. Mayo Clinic suggests bringing:²

• A list of the symptoms the person is having
• A list of every medicine and supplement they take
• A family member or friend
• Any advance directive or living will they’ve completed

Two more things help. Write down the three questions that matter most to you, so they don’t get lost. And decide ahead of time who should be part of the conversation; family who live far away can often join by phone or video.

After the first visit

The visit should end with a plan: what to try for each symptom, what to watch for, and when the team will see the person again. The team keeps working with the person’s other doctors.¹ Before you leave, ask how to reach the team between visits and after hours, and who to call first when something changes.

Planning ahead is part of the work

Palliative care teams help people talk through and write down their wishes. Medicare Part B covers advance care planning, and it’s free as part of the yearly Wellness visit when the provider accepts assignment.⁶ Advance care planning in California explains the directive and the agent, and POLST in California explains the medical order for someone who is seriously ill.

What it costs

Private health insurance usually covers palliative care services, Medicare Part B pays for some services that manage symptoms, and Medicaid coverage varies by state.⁴ Who pays for palliative care explains the costs, and Medi-Cal palliative care covers California’s own benefit.

Palliative care or hospice?

The two are related, and they aren’t the same. Palliative care can begin at any point, alongside treatment, while hospice begins when treatment to cure is no longer the goal and the focus is quality of life.⁴ If that time comes, palliative care can help with the change, preparing the person for what’s ahead and supporting the family.⁴ Palliative care vs. hospice explains how to tell which one fits.

Questions to ask the team

• What can palliative care do for the symptoms that bother her most?
• How often will you see him, and where?
• How do we reach you at night and on weekends?
• How will you work with her other doctors?
• What can we do at home between visits?