Hospice vs. Palliative Care: Voices from the Community

Each year, the world observes World Hospice and Palliative Care Day in October to celebrate and support hospice and palliative care worldwide. The goal is to raise awareness and understanding of the needs – medical, social, practical, and spiritual – of people living with serious and debilitating conditions, such as Alzheimer's disease, and their families.

What is the difference between palliative care and hospice?

Palliative care is specialized care that relieves symptoms, stress, and pain for anyone living with a serious illness. It can begin at diagnosis and continue alongside other treatments for as long as needed.

Hospice is a type of palliative care for the final stage of life, usually when life expectancy is about 6 months or less. At that point, treatments aimed at the disease stop, and the focus shifts entirely to comfort.

Hear from the community about palliative care and hospice

Speaking out about these issues also helps to increase the availability of hospice and palliative care. We began the conversation by reaching out to community members and asking them to share how this type of care has changed their life or the life of someone they know. We heard back from members, and these are some of the experiences they shared.

I had no idea palliative care was even available to me

Palliative care is care that improves the quality of life for anyone who is living with a serious or debilitating illness, including Alzheimer's disease. Many people with life-limiting conditions can greatly benefit from palliative care. Ask your doctor, healthcare provider, and insurance provider about palliative care to explore what options are available to you.

"I have help from a palliative care team. They are wonderful and have provided me with support. I had no idea palliative care was even available to me!"

"I was not connected to the palliative care group until I had completed chemo and started maintenance, so I wish it had been sooner."

Palliative care should begin with the diagnosis

In many cases, anyone with a serious, debilitating condition can benefit from palliative care services from the time of their diagnosis. Palliative care options work in many ways, from pain management to help with emotional stress and anxiety. In some cases, palliative care can include access to additional equipment that helps with safety and mobility.

Spiritual counseling is also an option. For families affected by Alzheimer's, a palliative care team can also support caregivers as they plan ahead and manage the demands of caregiving.

"Palliative care should begin with the diagnosis and follow the patient's needs as the disease progresses."

"I started palliative care right after diagnosis of multiple myeloma and myelodysplastic syndrome. I have used their services to help control nausea and pain over the past 3 years. Palliative care is not just for a terminal diagnosis. They are there to help you throughout your journey."

The type of palliative care varies greatly and depends on the agency you choose

Just as treatments can differ greatly between hospitals, so can the care provided by different palliative care providers. It is worth doing some research and asking around about the best available palliative care options for your condition. Attending a local support group meeting for your diagnosis might be a good place to ask about the differences between agencies.

"Unfortunately, the type of palliative care varies greatly and depends on the agency you choose, and no two agency/staff are alike."

Palliative care is a safe environment to unload stuff you cannot do anywhere else

Many community members described palliative care as a holistic approach in which doctors also serve, in some ways, as therapists – holding space and talking you through difficult conversations. Likewise, a palliative care doctor is not only focused on medicine but can also help connect you with healthy ways to de-stress and practice self-care.

"I no longer use Western treatments by and large, but my palliative care doctor is a saint. I highly recommend checking in to palliative care."

"I have a great palliative doctor. My doctor is always telling me to have fun and listen to my needs."

"Palliative care is a safe environment to unload stuff you cannot do anywhere else. My first talks of death were with my palliative care doctor too."

Hospice vs. palliative care: With hospice, you have months versus years to live

The biggest difference between palliative care and hospice, as many members across all our platforms shared, is that hospice care is not meant to be a long-term care option. Instead, it is designed to bring as much comfort as possible into the last stages of someone's life.

"With hospice, you have months versus years to live. At this point, curative measures stop, and the focus becomes comfort and quality of life. Palliative care has no timeframe. It allows you to continue with curative measures (i.e., chemo) and focuses on symptom management."

"With hospice, nothing other than care for comfort is done. End-of-life care is of very short duration."

"Hospice is after all treatments cease, and it continues as the terminal illness progresses to the end."

Hospice comes to you

One of the biggest differences between hospice and palliative care is that hospice is typically an in-home service, as most people in the final stages of a serious illness cannot travel comfortably. Moreover, hospice care is designed to care for you through those last moments, and most people, if given the choice, would rather be in their homes for that time.

"We had to go to palliative care, and they gave us information for places around the city that would help us. Hospice comes to you and can include many different services: music therapy, physical therapy, a chaplain, and more. My husband has done palliative care, and my mom has done hospice."

"Hospice is a great service! We had a very compassionate team that helped until the end."

Tell us about your palliative care or hospice experience

Thank you to everyone who shared their experiences. We are grateful to hear such a variety of viewpoints from members in so many communities.

Hear more about palliative care and hospice from our community:

• You’re Not Alone: How to Find Professional Help Managing Alzheimer’s, Alicia Scarr
• Late Stage Alzheimer’s Support Services & Resources, Editorial Team

To keep the conversation going and spread greater awareness about hospice and palliative care, tell us in the comments what you think of when you hear the terms palliative care or hospice.