Doula, Hospice, Palliative Care: Understanding the Difference
As an End of Life Doula, I get asked very often, what is the difference between palliative care and
hospice and where does a doula come in? When navigating these things, it can be overwhelming and
at times confusing. On top of managing illness, worry, grief, fear and the medical system in
general…not all these new terms or unfamiliar terms are being put infront of you. They sound like they
belong to the same world, and in a sense they do, but they are three distinct kinds of support, with
different jobs, different people behind them, and different moments when they’re the right fit.
These supports overlap, they often work side by side, and the terms get used loosely. But
understanding the differences can change everything about how a family experiences a serious
diagnosis. The right support at the right time can mean less fear, less scrambling, and more presence
for what actually matters….
So to quote Julie Andrews, “Let’s start at the very beginning, a very good place to start.”
Palliative Care: Comfort Alongside Treatment
What it is: Palliative care is medical care focused on relief from the symptoms and stress of a serious
illness. The goal is to improve quality of life, for both the patient and the family, by managing pain,
nausea, fatigue, breathlessness, anxiety, and the hundred other burdens a serious illness can carry.
Palliative care is not only for people who are dying, that is hospice and we will get to that next.
Who provides it: A team typically of palliative care physicians, nurses, social workers, and sometimes
chaplains, pharmacists, and dietitians, working alongside the patient’s other doctors.
When it’s used: At any stage of a serious illness, and alongside treatments meant to cure or control the
disease. Someone can be getting aggressive chemotherapy with every intention of beating their cancer
and still receive palliative care to manage the side effects. It can begin at diagnosis and continue for
years.
Where it happens: Hospitals, outpatient clinics, and increasingly at home.
Hospice: Comfort Care for the Dying
What it is: Hospice is care for people who are nearing the end of life. The focus shifts from curing the
illness to comfort, dignity, and quality of life for time that remains. All treatments for illness are ended
(a normal requirement for hospice) and the focus shifts to ensuring comfort through the dying process.
When it’s used: Generally, hospice is for people with a terminal illness whose physician believes they
have six months or less to live, if the disease runs its expected course. Living longer than six months
doesn’t disqualify someone, care continues as long as it’s needed. If a person lives beyond this
timeframe, they can remain on hospice indefinitely, provided a hospice physician re-certifies that the
person is still terminally ill at the end of each benefit period.
Who provides it: An interdisciplinary team that usually includes a physician, nurses, home health aides,
a social worker, a chaplain/spiritual guide, trained volunteers, and bereavement counselors. The team
supports not just the patient but the whole family.
Where it happens: Most often wherever the person calls home, a house, an apartment, a nursing
facility, and sometimes in a dedicated hospice house or hospital unit.
Hospice includes grief and bereavement support for the family, typically continuing for many months
after the death. In the U.S., hospice is covered under the Medicare hospice benefit, by Medicaid, and
by most private insurance.
Hospice is not “giving up”. There is still life to live, memories to be made, conversations to have, and
legacy projects to create. Personally, hospice is the most sacred time because the noise of doctors,
treatments, etc. dissolves and the focus shifts to the quality time with the person we care about.
However, I wouldn’t be a good doula if I didn’t mention the fatigue and frustration that can arise both
with caregivers and the dying. Caregivers forget to care for themselves and can get run down and
burnt out during this time. It’s so important to ask for help and for those of us who know a caregiver,
reach out. Offer time for them to step away to take a nap, a walk, a shower. The dying are going
through so many emotions, navigating mortality, physical discomfort. It’s important there to let those
we care about…talk about how they are feeling. Let them process and share. Help to create moments
that are not solely focused on their dying.
End-of-Life Doula: Presence, Not Procedure
What it is: An end-of-life doula provides non-medical, holistic support to a dying person and their loved
ones; emotional, spiritual, practical, and informational. Where the medical teams tend the body, the
doula tends the “experience”. Doulas are independent practitioners, sometimes volunteers connected
to a hospice. The role is non-medical and, in most places, not licensed or regulated the way clinical care
is. However, most doulas have gone through training and certification through various programs.
What that looks like: This varies greatly by each doula. We all have our specific offerings…some
flexible, very some specific. It might include:
Holding space for fears, questions, and conversations that are hard to have anywhere else
Helping someone explore what a “good death” means to them, and planning toward it
Legacy work — letters, recordings, life review, leaving something behind
Planning and sitting vigil in the final days
Creating a meaningful environment in the space where someone is dying
Offering caregivers respite and a steady presence
Helping families understand and navigate the medical system without being part of it
Offering grief support to the dying and loved ones during and after passing
Support after death with clearing/cleaning of a home, donations, removal of medical
equipment, access to estate lawyers and navigating probate
When it’s the right fit: At any time. Doulas are often mostly involved in the final months, weeks, and
days, some families bring a doula in at diagnosis; others find one in the last week. But, we also
encourage everyone to connect with a doula at any stage….even with someone isn’t facing a terminal
diagnosis. Doulas can provide death education, planning tools and answer questions about death and
dying that might be difficult to talk about. We are there to help keep the dying and loved ones
informed, answer questions, ensure dignity in dying and most importantly, ensure the dying person’s
wishes are carried out to the absolute best of our ability.
Where it happens: Wherever the person and family are, and wherever they need presence.
How They All Fit Together
Here’s the part families find most reassuring: these aren’t competing choices. They layer.
A person might receive palliative care for two years while undergoing treatment, transition to hospice
when treatment is no longer the goal, and have an end-of-life doula walking beside them and their
family through all of it — present at the kitchen table, the hospital, and the bedside.
The medical teams manage symptoms and care for the body. The doula tends to the human
experience surrounding it all. Together, they form a fuller circle of support.
A Closing Thought
As a doula I invite you to reach out. Asking for support is a form of love, not surrender. We all have the
right to the death we want, and doulas are here to ensure that we support how that looks and feels
with dignity. All of this can be overwhelming, at any stage of our human existence, and doulas are
here to answer questions, guide you through the process and talk things through with anyone who’s
confused about where to begin or just wants to explore death and dying.
*For more information, book a consultation, or learn more about my services, please visit
