Palliative care aims to address any and all symptoms and side effects people face when dealing with a serious illness, such as cancer, a stroke, kidney disease or Alzheimer’s disease. That means plans for palliative treatment, by definition, must be tailored and specific to each individual.
Palliative care delivery can also look different depending on where you live and where you get medical care. At larger hospitals, academic medical centers, and outpatient medical offices, a palliative care team might include doctors, nurses, social work services, pastoral care, integrative medicine and other providers, all under one roof. A palliative care team in smaller hospitals or clinics may have fewer providers (perhaps just a doctor and a nurse) who instead connect people with the care they need by finding specialists outside their team to help.
Whether you get palliative care at a hospital, a doctor’s office or at home, here are a few things you can expect during the course of care:
1. You’ll meet with the palliative team to discuss how the illness is affecting you
The first step is meeting with the palliative care team (expect to meet with a doctor nurse, or social worker at your first visit), who will want to talk about any unmet needs and suffering you’re facing as a result of your illness.
The team wants to get to know you, how being sick is affecting your day-to-day life and who’s taking care of you. (Making sure your caregiver — whether it’s a parent, spouse or friend — has the capacity and resources they need to take care of you is an important part of palliative care, too.)
“’What can I do to help?’ is the question I start a lot of my conversations with,” says Dr. Andrew Esch, palliative care medical education consultant for the Center to Advance Palliative Care and a palliative care specialist in Buffalo, New York. Open-ended questions get people talking about their illness and their unique experience with that illness, he adds. And that’s what the palliative care team wants to know.
“‘What can I do to help?’ is the question I start a lot of my conversations with.”
DR. ANDREW ESCH, PALLIATIVE CARE SPECIALIST
2. The team will help (or find help)
After you meet the care team, they’ll make a plan about what type of help you need. For some people, the next step is talking to a physician about medications for things like nausea or constipation. For others, the next step involves meeting with a social worker to discuss paying for doctors’ bills along with other regular expenses or how to talk about a serious illness with an employer. Some people may need help getting a wheelchair, hospital bed, or other medical equipment they need at home; others require support or treatment for anxiety, worry or depression about their illness. And some people may need all of those things.
Palliative treatment can help address challenges such as:
- Pain.
- Nausea and/or vomiting.
- Constipation.
- Shortness of breath.
- Fatigue.
- Trouble sleeping.
- Loss of appetite.
- Anxiety.
- Depression.
- Financial concerns.
- Legal concerns.
- Caregiver support and/or burnout.
- Lack of access to medical equipment someone may need at home.
- Access to religious services.
- Unmet spiritual needs.
3. The palliative care team can help you make medical decisions
Understanding treatment options, weighing pros and cons of different options, and making sure decisions about treatment align with your values and personal preferences can all be extremely difficult. Your palliative care team can act as a liaison between you and your other medical providers to help you make the best decisions about treatment for you.
“The philosophy behind palliative care is to be an extra layer of support.”
DR. ANDREW ESCH, PALLIATIVE CARE SPECIALIST
In addition to helping you make those medical decisions, they’ll help with other questions you may have about navigating the health care system, such as understanding medical forms, concerns about whether your insurance covers specific treatments or providers, connecting you with financial counseling, filling out advance directives, and more. They will make sure you’re getting the treatment you should be getting when you need it.
4. The palliative care team will be involved for as long as you need or want them to be
“The philosophy behind palliative care is to be an extra layer of support,” Esch explains. So it’s really essential for the team to be involved for as long as a person needs or wants the help, he says.
For example, people with cancer who have a palliative care team during treatment often continue seeing that team afterward to help with problems that may linger even after surviving cancer, such as neuropathy, worry, and in some cases PTSD symptoms.
