A Family Guide to Preparing Without Giving Up Hope

After a serious diagnosis, many families feel torn between hope and getting ready. They do not have to choose. Preparing is a way of caring for someone, and it can go on alongside treatment and hope.

Does planning ahead mean giving up on treatment?

No. The American Cancer Society says palliative care can be given at any stage of a serious illness, starting at diagnosis, and alongside treatment to control or cure the illness. A National Institutes of Health expert quoted by HealthDay says embracing palliative care does not mean giving up on treatment, and that it ideally starts at the beginning of a serious diagnosis.

Palliative care is not hospice. Hospice, the American Cancer Society explains, is for when a cure or control of the illness is no longer possible and life expectancy is about six months or less, and it focuses on comfort. See Hospice vs. Palliative Care and When to Consider Hospice.

What is worth doing early?

Ask the doctor what to expect, and ask whether a palliative care team is available. A Cleveland Clinic Journal of Medicine article notes that a change in health is a natural time to begin advance care planning, by listening first to what matters to the patient.

If the person is able, they can name a health care proxy and write down their wishes. The National Institute on Aging says the proxy is usually named in a durable power of attorney for health care. The Institute also suggests putting important papers in one place. Family members should ask for a copy of any advance directive, and know where the originals are.

How do we bring this up without upsetting them?

Ask permission, and let the person lead. You might say you want to make sure their wishes are followed, whatever happens. Start with what matters to them, not with the illness. Some people want to talk right away, and some need time. Both are normal.

What should caregivers know about work?

The federal Family and Medical Leave Act gives eligible employees 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, according to the Department of Labor. To be eligible, an employee must have worked for the employer at least 12 months and 1,250 hours, at a location with at least 50 employees. The leave is unpaid, though employees may use paid leave they have earned. Some states have their own laws, so ask your employer or your state labor department.

It is normal for this to feel hard

Hope and fear often arrive together. Caregiving is tiring, and it helps to share it. See Becoming a Caregiver: What Changes First and Caregiver Burnout and Respite Care.

What should we do next?

Ask the care team about palliative care, find out who the proxy would be, and gather the key papers. See Planning Ahead: Healthy vs. After a Diagnosis and What Does “Terminal” Mean?.

This is general educational information, not medical or legal advice. A doctor, palliative care team, hospital social worker, or attorney can help with a specific situation.