.svg)
Section 6
A Tender Trek Toward
Palliative & Hospice Care
If the title of this section put a knot in your stomach, hang in there. You may not be anywhere near this stage in your journey, but it’s best to study the map before you get lost.
Remember, just like advanced care planning (see Section 3), planning for the end of your life or that of a loved one is as compassionate and respectful as it is difficult. Planning allows you to have meaningful conversations with your person, learn their wishes, and know your options for when the going gets tough.
There are two primary types of end-of-life care: palliative care and hospice care. While they are different, they share the same goal: to support the comfort and quality of life of those facing death.
Palliative Care
Palliative care is specialized medical care for people facing serious illnesses like dementia. The goal is to improve the quality of life for both the individual with the illness and those caring for the person. A palliative care team includes doctors, nurses, and social workers who work together with your other doctors to give you an extra layer of support. You can have palliative care at any age and at any stage of illness. You can also receive palliative care in conjunction with treatment. Palliative care is as much about helping the family as it is about treating the person with dementia. Learn more.
Hospice Care
Hospice care focuses on the care, comfort, and quality of life of a person with a serious illness who is approaching the end of life. Treatments and care focus on comfort rather than curing the underlying disease. The hospice team includes specially trained providers including doctors, nurses, home health aides, social workers, counselors, clergy, and volunteers. Families can also be involved in the care. Hospice teams can provide medical care to alleviate symptoms and pain, this can include medical equipment too - think hospital beds, etc. The team will also provide counseling around the end-of-life experience, as well as emotional and spiritual support to the individual and their care partners. Grief support and respite care are also provided. Usually hospice care is provided in the home or in a medical facility, but there are hospice centers or units in certain parts of the country. Learn more.
The process for qualifying for hospice care can sometimes be complicated by an ADRD diagnosis. Learn how dementia complicates hospice eligibility so when the time comes, you’re prepared to advocate for your person’s needs.
Palliative Care vs. Hospice Care: what’s the difference?
Palliative care is specialized medical care for people living with a serious illness. It can be provided at any age and any stage of illness to ensure quality of life. It can be provided along with other treatments.
Optimize comfort
Reduce stress
Provide emotional and spiritual support
Relieve symptoms
Pain Management
Support caregivers
Can be provided in a hospital, clinic, or home setting
.svg)
Hospice care is a type of palliative care, provided at the end of life, usually (but not always) when a person has fewer than 6 months to live. The goal of hospice care is to ensure a person is comfortable and without pain.
Amazing human alert!
An end-of-life doula, also known as a “death doula” or “dying well doula,” is a trained individual who provides non-medical, holistic support to individuals nearing the end of their life and their families. Much like a birth doula who offers support during childbirth, an end-of-life doula offers emotional, spiritual, and practical assistance during the dying process. Their role is to ensure that the individual's final journey is as comfortable, meaningful, and peaceful as possible.
In Section 3, we touched on talking with your person about their funeral in order to learn their wishes and get their affairs in order.
The details of funeral planning will look different based on cultural, religious, and personal preferences, but when the time comes, these are some of the logistics you may need to handle if you haven’t already:
Let the right people know: This may include notifying healthcare professionals, the police (if necessary), the hospice or care facility, and family and friends.
Find a service provider: a provider, such as a funeral home, can help with transporting the deceased, coordinating services, and providing guidance on legal requirements.
Decide on disposition: common options include burial, cremation, or donation to science. Your person may have expressed these wishes to you or via an advanced care directive.
Plan a service: some options include a traditional funeral service, a memorial service, a graveside service, or a celebration of life.
Share an obituary: an optional notice to the community, an obituary can be an opportunity to honor your person and recognize the highlights of their life.
Don’t forget, there’s more paperwork: you may need to obtain a death certificate, notify relevant agencies, or settle remaining affairs, such as wills and estates.
Here’s a great resource on immediate steps to take when a loved one dies.
.webp)
If you’re like, “Hold up! I don’t have the slightest clue what my person would want!” Fear not, head back to Section 3 for support around tough but important conversations you can have with your person to understand and honor their wishes.
Palliative care is specialized medical care for people living with a serious illness. It can be provided at any age and any stage of illness to ensure quality of life. It can be provided along with other treatments.
Hospice care is a type of palliative care, provided at the end of life, usually (but not always) when a person has fewer than 6 months to live. The goal of hospice care is to ensure a person is comfortable and without pain.
Let the right people know
Find a service provider
Decide on disposition
Plan a service
Write an obituary
Paperwork
