
What is palliative care?
Palliative care provides:


Support for mental health concerns, emotional challenges, and spiritual or existential questions that may come with ALS

Decision-making and advance care planning support to help you make choices guided by your goals and values

Family and caregiver support
What is the difference between palliative care and hospice?

Palliative Care

Hospice
Palliative care can begin at any stage of ALS, even right after diagnosis.
Hospice begins when you choose to focus on quality of life instead of slowing the progression of ALS, and a health care provider determines that you qualify for hospice.
Palliative care may continue for months or years.
Hospice may continue for weeks, months, or years — timing varies from person to person, but the goal is to provide support leading up to the end of life.
Your palliative care team will work alongside your existing ALS care team (including your neurologist and other doctors).
Hospice provides a primary care team focused on your comfort. You can also keep working with your ALS care team.
Palliative care helps you manage symptoms, relieve stress, and experience the best possible quality of life while you receive ALS treatment.
Hospice shifts the focus from slowing disease progression to helping you live as fully and comfortably as possible in the time you have.
You’ll continue any therapies you are currently receiving, like physical, occupational, or speech therapy.
You may have the option to continue physical, occupational, or speech therapy, depending on the services available through your hospice program. Some hospice programs provide additional therapies, like music, massage, or pet therapy.
Palliative care is provided in some ALS clinics, at outpatient clinics, at home, and online via telehealth.
Hospice is provided at home and in assisted living or nursing facilities.
Palliative care is covered by most health insurance as part of your care plan, just like other types of specialty medical care.
Hospice is covered by Medicare, Medicaid, and most private insurance as a separate benefit.
When is it time to start palliative care?
Palliative care can begin whenever you are ready. Starting palliative care early has been linked to better outcomes for people living with ALS and their families.
It may be a good time to ask your ALS care team about palliative care if:


You are struggling with physical or emotional
symptoms that are affecting your quality of life



How can I advocate for palliative care with my ALS care team?
If you think palliative care may be a good fit for you, the next step is to ask your ALS care team or primary care team for a referral. Some people worry that asking about palliative care will send the wrong message or that their care team will think they have lost hope, but that’s not the case. Palliative care is about striving to live as fully as possible at every stage of ALS. Asking about palliative care is an act of self-advocacy.
Learning more about the palliative care programs in your area can help you decide if palliative care is right for you. Some ALS clinics have palliative care professionals as part of a multidisciplinary team, so you can receive palliative care during your regular clinic visits. If this is not an option at your clinic, you can receive palliative care at an outpatient center, in your home, or online via telehealth.
How can I advocate for palliative care with my ALS care team?
You can use these directories to find palliative care programs:
Find palliative care programs with expertise in ALS: als.org/navigating-als/living-with-als/therapies-care/palliative-care
Explore additional palliative care programs in your area: getpalliativecare.org
How can palliative care support me and my family?
Symptom management


Fatigue
Excess saliva (spit)
and secretions

Difficulty with swallowing (dysphagia)

Unintended weight loss

Breathing difficulty and
shortness of breath

Sleep problems

Constipation
“Just getting palliative care involved was an instant burden lifted. I was working during the day and coming home to care for my mom at night. It was so much to juggle.”
“I’m early in my palliative care journey, but just having another layer of support puts me at ease. My team is currently helping with some of my symptoms.”
-Satrina B., person living with ALS
“The palliative care team saw my mom once a month and could help with growing symptoms, compared to her ALS care team that saw her every 3 months. Because of that, the palliative care team were great advocates for us and worked well with my mom’s ALS care team.”
You do not have to accept these symptoms as simply “part of ALS.” Many symptoms can be well managed with the right support. You can ask your palliative care and ALS care teams about any symptoms that are bothering you.
Emotional and mental health support
Living with ALS can bring grief, fear, anger, and depression. These feelings are completely understandable. Palliative care specialists can provide support to help you and your loved ones with:

Depression and anxiety

Adjusting to changes in your body and your roles



Spiritual and existential support
Living with ALS often brings up questions about meaning, purpose, mortality, and legacy. Your palliative care team can help you and your loved ones explore:

What matters most to you in the time you have

How you want to be remembered

Spiritual or religious
concerns

Feelings of hope, peace, or unfinished business
Decision-making and advance care planning support
Living with ALS means that you will need to make important decisions about your future health care. For example, as your disease progresses, your ALS care team may recommend treatments like breathing support or a feeding tube to help you stay as healthy and comfortable as possible. Even if you don’t have trouble breathing or eating on your own right now, it’s never too early to start planning ahead for your future care.
Palliative care can help you navigate the choices that come with ALS on your own terms, guided by your goals and values. Palliative care teams are trained to help you and your family:

Understand your treatment and care options, including feeding tubes, breathing support, and hospice

Clarify what matters most to you and put it in words

Document your wishes by completing advance directives and Physician/Provider Order for Life-sustaining Treatment (POLST) forms or the equivalent forms in your state

Prepare for conversations with loved ones and your ALS care team
Make decisions at your own pace, without pressure
Whether you choose to pursue aggressive treatment, focus on comfort, or anything in between, your palliative care team will support you in your decision.
More resources to help you plan ahead and communicate your wishes
To learn more about POLST, visit: polst.org
To learn more about advance directives, visit: fivewishes.org
If you would like to learn more about ALS treatment options and think through what’s important to you, visit My ALS Decision Tool™ at lesturnerals.org/my-als-decision-tool/
To reflect on your values and future care needs, visit: unityhospice.com/als-values-assessment-guide-helps-patients-improve-quality-of-life
For guidance on having difficult planning conversations with your loved ones, visit: lesturnerals.org/difficult-conversations-can-be-some-of-the-most-important
Specialized support for families and caregivers
Caring for someone with ALS is one of the most meaningful and demanding things a person can do. Palliative care isn’t just for people living with ALS — it’s also designed to support families and caregivers.


Emotional, spiritual, and grief support


A note to caregivers
Can I transition from palliative care to hospice?

When the time comes, your palliative care team can help you and your family think about whether hospice is the right next step. Working together with your ALS care team, your palliative care team will guide you through the transition to hospice.
To learn more about hospice, visit our ALS & Hospice Guide at: www.lesturnerals.org/als-hospice-guide

Additional resources
ALS & Hospice Guide

Palliative care resources

Use these directories to find palliative care programs near you:
Find palliative care programs with expertise in ALS: als.org/navigating-als/living-with-als/therapies-care/palliative-care. Explore additional palliative care programs in your area: getpalliativecare.org
Learn more
The Les Turner ALS Foundation exists to guide you to answers, support you and your loved ones and advance scientific research. To learn more about living with ALS visit, lesturnerals.org/resources.
My ALS Decision Tool™
ALS Learning Series
My ALS Communication Passport to Quality Care
Support Groups
Explore More Educational Resources from the Les Turner ALS Foundation
Theses resources are made possible by a generous donation from the Gilbert & Jacqueline Fern Foundation and other donors to the Foundation.









