Planning
Life planning: difficult decisions, hospice care, and bereavement support
This page gathers the resources families use to make decisions ahead of time, to understand hospice, and to find support after a loss. It runs in the order most people need it: the conversations and the paperwork first, then hospice options, then grief support. You do not have to read all of it today. Take the section that matches where you are right now.
How to use this page
Start with the printable guides. They give you words to open a conversation and a way to write down what your loved one wants, so the decisions are not being made from scratch on a hard day. Everything else here is a link out to an organization that does this work full time.
Difficult decisions
These organizations help with the choices that come up around treatment, care preferences, and how to talk about them as a family.
Guides you can print and fill in
Three PDFs. Open them in a new tab, or print them and work through them with your loved one at a time that suits you both.
What comfort care means
Comfort care is not a program you sign up for. It is a description of what the care is trying to do: keep the person comfortable, rather than treat the disease itself.
You will hear the phrase most often in a hospital, when the team says they are moving to comfort care. It has no fixed legal definition, so it is fair to ask them what they mean by it in your situation.
Comfort care, palliative care, and hospice
Three terms get used as though they were the same thing. They are not.
- Palliative care treats symptoms and quality of life for anyone with a serious illness. It can begin at diagnosis, and it can run alongside treatment meant to slow or cure the disease.
- Hospice is a type of palliative care for someone a doctor expects to live six months or less if the illness runs its usual course. Choosing it means stopping treatment aimed at curing the terminal illness. Other medical care continues.
- Comfort care is the everyday phrase for care focused on comfort. It can happen within any of the above, at home, in a hospital, or through hospice.
Does comfort care mean death is close?
Not on its own. Comfort care describes a goal, not a prognosis. People receive comfort-focused care for weeks or months, and some receive it while other conditions are still being treated.
A hospice decision is reversible too. A person can leave hospice and enroll again later if a doctor still certifies they meet the criteria, and Medicare can keep paying past six months if the hospice doctor recertifies that they are still terminally ill.
Questions worth asking before hospice starts
- Ask what the hospice will and will not continue, including any breathing equipment already in use.
- Medicare requires the hospice to tell you which items, services and drugs it treats as unrelated to the terminal illness, and why. You can ask for that list in writing, as an addendum to the Hospice Election Statement.
- Medicare does not pay room and board when hospice care is given at home or in a nursing home.
- The day to day care of someone dying at home is given by family and friends. The hospice team coaches you and can arrange respite care.
Sources: the National Institute on Aging on palliative care and hospice care and on care and comfort at the end of life, and Medicare on hospice coverage.
Hospice care options
Where to read about what hospice actually provides, how to find a provider, and how it is paid for.
Bereavement support
Support after a loss, for you and for the rest of the family.
Ask for help sooner than you think you need to
Do not hesitate to seek professional guidance. Talk to your loved one’s doctor, the clinic social worker, or a therapist who specializes in grief and loss. They can give you support built around your situation and help with the emotional weight of ALS as it progresses.
Related pages
Educational content only. Nothing on this page is legal advice, and it is not a substitute for your loved one’s care team. Advance directive rules, hospice eligibility, and coverage differ by state and change over time, so confirm the details with an attorney, your clinic social worker, or each organization directly.