Terminal Diagnosis: Next Steps for Care and Paperwork

After a terminal diagnosis, the first step is to understand what the doctors expect and what your options are, including palliative care. Then put your wishes in writing with an advance directive and a health care agent, sort out money, insurance and work, and tell the people close to you. You don't have to do everything in the first week, and you can change your plans as things change.

Get clear answers from the medical team

It is common to hear very little after the words "terminal." Consider bringing a family member or friend to take notes, or ask to record the conversation. Questions worth asking include:

• What is the diagnosis, and how is it expected to progress?
• What is each treatment meant to do: cure, slow the illness or ease symptoms?
• What are the likely side effects and benefits, and how would we know it is working?
• What symptoms should we expect, and who do we call, day or night, when they appear?
• How much time might I have, and what could change that?
• What would palliative care or hospice offer, and when should we think about them?

Doctors give estimates rather than promises, so ask for a range and ask to revisit it as things change. You can ask for a second opinion if you want one. Check with your insurer about coverage and ask the first doctor to send your records.

Ask about palliative care early

Palliative care is specialized care for the symptoms and stress of a serious illness. It is available at any stage, including at diagnosis, and it can be combined with treatment meant to cure or control the illness. A team may include doctors, nurses, social workers and chaplains, and it can help with pain, breathlessness, nausea, anxiety and hard decisions.

You don't need to wait for a referral to ask. Say to your doctor, "Can we involve the palliative care team?" See palliative care vs hospice for how it differs from hospice and what Medicare covers.

Put your wishes in writing

These documents speak for you if you can't. They generally need to be signed while you are well enough to understand them, so it is wise to do them early. Rules vary by state, so use forms for your state.

• Advance directive. MedlinePlus describes these as legal documents that let you spell out decisions about end-of-life care ahead of time. They usually include a living will, about treatments you do or don't want, and a health care proxy or durable power of attorney for health care, which names someone to decide for you. See advance directive vs living will.
• POLST. A POLST is a portable medical order for people who are seriously ill or very frail. It is created after a discussion with your clinician and must be signed by one. It turns your wishes about things like CPR and hospital transfer into orders that emergency staff can follow. See DNR orders explained.
• Financial power of attorney and a will. These cover who can manage your money if you can't, and who gets what. Many people talk to an attorney about these. See what an executor does and wills and funeral wishes.

The National Cancer Institute advises giving copies to the people who need them and keeping originals safe. The Conversation Project offers free guides for talking with your family and choosing a health care proxy.

Sort out money, insurance and work

The National Cancer Institute suggests reviewing your coverage with your insurer, particularly for hospice and home health services, so nothing surprises you later. A few things to check:

• Life insurance. Some policies let a terminally ill person take part of the death benefit early. The IRS describes terminally ill as certified by a physician as expected to die within 24 months, and says these payments may be tax-free in some cases and reported on Form 8853. Ask the insurer about its terms and a tax adviser about your situation.
• Family leave. Under the Family and Medical Leave Act, eligible employees can take up to 12 workweeks of unpaid, job-protected leave in a year to care for a spouse, child or parent with a serious health condition, or for their own. To be eligible you must have worked for your employer for at least 12 months and 1,250 hours in the past year, and the employer must have 50 or more employees within 75 miles.
• Benefits and help. Ask your care team whether a social worker can point you to benefits, financial assistance and local services for your situation.
• Records. Gather bank and investment accounts, insurance policies, pension details and the contact details of your attorney and accountant in one place.

Also make a list of digital accounts and how to reach them. The tool below walks you through it.

When to consider hospice

Hospice is comfort care for the last phase of a terminal illness. To get the Medicare hospice benefit, your hospice doctor and regular doctor certify a life expectancy of six months or less, and you choose comfort care instead of treatment to cure the illness. Original Medicare covers hospice services from an approved hospice at no charge, with up to $5 for symptom-control prescriptions and 5% of the approved amount for inpatient respite care. It does not pay for room and board in a facility.

You can ask for a hospice evaluation before you are ready to sign up. You can also revoke hospice at any time, and coverage resumes as before. Hospice also includes bereavement services for family for up to a year after a death. Our guide to hospice care walks through what to expect.

Tell family and friends, and plan together

Decide who needs to know and when. It can help to tell a few close people first and then let them pass on news. Ask people what help you want, such as rides, meals or simply visits.

• Consider a family meeting to share news and divide practical jobs such as appointments, paperwork and updates.
• With children, use honest, simple, age-appropriate words and avoid euphemisms. See explaining death to children.
• Consider whether you want to talk about funeral wishes, and whether a living funeral or celebration while you are here would mean something to you.

Write down your funeral and legacy wishes

Many people find it a relief to decide now so their family does not have to guess. You can note whether you prefer burial or cremation, the type of service, who should speak, music and readings, and any faith or cultural customs. See planning a funeral when someone is terminally ill. Some people also record messages or write letters for the people they love.

Look after yourself and your caregivers

Caring for someone who is dying is hard work, and carers need rest too. Medicare hospice includes inpatient respite care, a stay of up to five consecutive days in an approved facility, to give caregivers a break. Hospice teams also include social workers and counseling.

It is normal to grieve before a death as well as after it. Our guide on anticipatory grief explains what that can feel like and where to find support.

What to do next

1. Write down your questions and book time with the medical team.
2. Ask about palliative care and, when it feels right, a hospice evaluation.
3. Name a health care agent and complete an advance directive.
4. Gather your documents and check life insurance and work leave.
5. Choose someone to start the conversation with your family.