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We're Approaching End of Life

This may be the hardest page in this wiki. If you're reading it, you're facing something that no amount of planning fully prepares you for.

What follows is practical information. Having the logistics handled gives you more room to be present with the person you love.

Understanding the options

Palliative care vs. hospice

These are often confused:

Palliative care focuses on comfort and quality of life. It can begin at any stage of a serious illness, alongside curative treatment. You don't have to stop treatment to receive palliative care. A palliative care team can help manage pain, symptoms, and the emotional burden on both the patient and family2.

Hospice is care for people approaching the end of life, with a typical eligibility timeframe of six months or less. It prioritizes comfort and symptom management. When choosing hospice, the focus shifts from seeking cure to supporting comfort and quality of remaining time.

Hospice services typically include medical care focused on comfort, nursing visits, medications for symptom relief, medical equipment, social work support, spiritual care when wanted, respite care, and bereavement support for family. Medicare, Medicaid, and most private insurance cover hospice, with minimal or no cost to the family.

When to start the hospice conversation

Many families wait too long. The median hospice stay is about 19 days, far shorter than the six months that eligibility allows. Starting earlier means more time with better symptom management, more support for you, and more space for the things that matter.

Delay in hospice conversations is common in progressive illnesses where decline is slow and uneven, and families may not recognize early enough that the illness is also terminal.

Signs it may be time to discuss hospice:

  • The doctor has indicated that curative treatment is no longer effective
  • Hospitalizations are becoming more frequent
  • The person's condition is declining despite treatment
  • The focus has shifted from "getting better" to "managing comfort"
  • You or the person you're caring for are asking, "What are we doing?"

You can ask the physician directly: "Is this person eligible for hospice?" You can also request a hospice evaluation independently: call a local hospice organization and ask for an assessment.

Advance directives

If these aren't already in place, now is the time. If the person can still participate in decisions, start with a conversation about values and who should make decisions, not only the paperwork.

  • Advance directive / living will: Documents what medical interventions they do and don't want (CPR, ventilation, feeding tubes, etc.)
  • Healthcare proxy / medical power of attorney: Names the person who makes medical decisions when they can't
  • POLST/MOLST form: Physician Orders for Life-Sustaining Treatment, a medical order (not just a directive) that travels with the patient. Availability and naming vary by state, and these forms are usually most relevant for serious illness or frailty when wishes need to travel as medical orders.

See Legal & Navigation for how to get these documents prepared. Treat these documents as living documents and review them after major health or life changes.

Having the conversations

With the person you're caring for

If they're able and willing to talk:

  • Ask what matters most to them: not what treatments they want, but what quality of life means to them
  • Listen more than you talk
  • Don't force a single conversation to cover everything
  • Accept that they may not want to discuss it, and respect that, but gently return to it
  • Tools like The Conversation Project (theconversationproject.org) provide structured guides

With family

Family dynamics get amplified at end of life. Siblings disagree, old conflicts resurface, and grief comes out as anger.

Practical approaches:

  • Share facts and medical information as clearly as possible
  • Designate one person as the medical contact to reduce conflicting information
  • Acknowledge that people grieve differently and on different timelines
  • If conflict is blocking decisions, a hospice social worker or family mediator can help
  • Some family members may need to say goodbye in their own way and on their own schedule

Taking care of yourself

End-of-life caregiving is an extreme form of sustained emotional labor. You are losing someone while you care for them, and grieving while you manage logistics and plan ahead.

What helps:

  • Hospice support: Use the social worker, chaplain, and counseling services that hospice provides. They are there for you, not just the patient
  • Respite: Hospice includes respite care. Use it. You cannot be present for the moments that matter if you're depleted by the hours that precede them
  • Let people help: When someone asks "What can I do?", answer them. Meals, errands, sitting with the patient so you can sleep
  • Name your grief: What you're feeling, even before death, is grief, and you don't have to wait until after to acknowledge it
  • Ask about specialized pre-loss support: If grief before the death feels unrelenting rather than simply painful, ask a hospice or nursing-home social worker about structured group programs built for exactly this. A small pilot study of a 10-session group therapy for family caregivers at risk of complicated grief, delivered by nursing-home social workers before the death, found significant reductions in pre-loss grief severity and meaningful gains in caregivers' sense of preparedness and peace4

What to expect

Every death is different. But there are common patterns as the body begins to shut down:

  • Increased sleeping
  • Decreased appetite and thirst (this is normal and not painful; do not force food or water)
  • Changes in breathing patterns
  • Skin color and temperature changes
  • Withdrawal from conversation
  • Confusion or altered consciousness
  • Restlessness

The hospice team can help you understand what's happening at each stage and what to do.

After death

In the immediate hours and days:

  • The hospice nurse will come to confirm death and handle the necessary calls
  • The funeral home you've arranged (or the hospice can recommend one) will transport the body
  • Notify family, friends, and the person's physician
  • There is no rush. You can sit with them. Take the time you need

For the weeks and months that follow, see Caregiving Has Ended.

  • VA Caregiver Support: Support services, respite, and bereavement resources for caregivers of veterans approaching end of life
  • FMLA (Family and Medical Leave Act): Job-protected leave to care for a family member with a serious health condition, including end-of-life care
  • Medicaid: Covers hospice care in most states, including medications, equipment, and respite for caregivers

If you need help now

Hospice Foundation of America: 1-800-854-3402 (information and referrals).

CaringInfo, from the National Alliance for Care at Home (formerly the National Hospice and Palliative Care Organization): caringinfo.org. Information on hospice and advance directives for patients, families, and caregivers.

If you're in emotional crisis, call or text 988.

  1. National Institute on Aging. "Advance Care Planning: A Conversation Guide." Source → ↩

  2. "Palliative Care." Source → ↩

  3. Administration on Aging / ACL. "Advance Care Planning for Serious Illness." Source → ↩

  4. Supiano, K.P., Andersen, T., Luptak, M., Beynon, C., Iacob, E., & Levitt, S.E. "Pre-loss group therapy for dementia family care partners at risk for complicated grief." Source → ↩