Higher-riskArticle link

Hospice comfort care decisions (forgoing hospital interventions)

Key points

  • Hospice comfort care shifts focus from curing the disease to relieving suffering and maximizing quality of life in the time remaining.
  • You can request a free hospice evaluation at any time—you do not need a doctor’s referral, and it does not commit you to anything.
  • Hospital interventions like IVs and ventilators often cause more distress than benefit for a person with advanced Alzheimer’s; hospice manages symptoms at home with non-invasive methods.
  • You can revoke hospice at any time and seek hospital care if needed, with no penalty, and return to hospice later if you choose.
  • Hospice provides a full team—nurse, aide, social worker, chaplain—and covers medical equipment, medications, and family support, often at no cost through Medicare or Medicaid.
  • Many families find that choosing hospice brings them closer to their loved one and allows for a more peaceful, dignified death at home.

General caregiving information, not medical advice. Check medications and major care changes with your clinician.

Step-by-step

  1. Start a family conversation early, before a crisis. Gather your loved one’s advance directives, living will, or any written wishes. If they cannot speak for themselves, use what you know of their values—for example, did they ever say they would not want to be kept alive on machines? Write down these wishes and share them with the healthcare team.

  2. Request a hospice evaluation, which is free and does not commit you to anything. Call a local hospice agency and ask for a nurse to come to your home or the hospital. The nurse will review medical records, talk with the doctor, and explain what hospice can offer. This evaluation helps you see what comfort care looks like without pressure.

  3. Meet with the hospice team to discuss what forgoing hospital interventions means in practice. Ask: 'If we choose hospice, what happens if my loved one gets a fever or has trouble breathing?' The answer should be that the hospice nurse will come to you, use medications at home, and only transfer to an inpatient hospice unit if symptoms cannot be managed—not to a hospital ER.

  4. Create a comfort care plan with the hospice nurse. List specific symptoms you worry about—pain, agitation, congestion, shortness of breath—and ask how each will be treated without IVs or ventilators. For example, morphine drops under the tongue can ease breathing distress, and anti-anxiety meds can be given as a patch or liquid.

  5. Inform the hospital or current care team of your decision. If your loved one is in the hospital, tell the attending doctor you are choosing hospice and want to stop all life-prolonging treatments. The hospital will help with discharge to home or a hospice facility. If you are at home, call the hospice agency to start services immediately.

  6. Prepare the home environment for comfort. Set up a hospital bed (provided by hospice) in a quiet room with soft lighting, familiar photos, and gentle music. Keep the room at a comfortable temperature and have a fan for air circulation. Place a call bell or baby monitor nearby so you can reach the hospice nurse quickly.

  7. Lean on the hospice team for emotional and spiritual support. The social worker can help with grief counseling, the chaplain can offer prayer or meditation, and volunteers can sit with your loved one so you can rest. Do not try to do this alone—hospice is designed to support the whole family.

  8. Monitor your loved one’s comfort closely and call the hospice nurse at any sign of distress—pain, moaning, restlessness, or changes in breathing. The nurse can adjust medications over the phone or come for a visit. Trust that most symptoms can be managed without a hospital trip.

  9. Give yourself and your family permission to be present without fixing. Sit with your loved one, hold their hand, speak softly, and tell them it is okay to let go. Many people wait until they are alone to pass, so do not be surprised if your loved one dies when you step out for a moment—this is common and not a sign of abandonment.

  10. After death, the hospice team will handle all arrangements, including notifying the doctor, providing paperwork, and offering bereavement support. You do not need to call 911 or go to the hospital. Let the hospice nurse guide you through the next steps.

What not to do

  • Do not wait for the doctor to bring up hospice. Many doctors hesitate to recommend it because they fear upsetting the family. If you notice your loved one is declining—eating less, sleeping more, having frequent infections—ask for a hospice evaluation yourself. You can start the conversation at any time.

  • Do not assume hospice means you cannot call 911 or go to the hospital. You have the right to revoke hospice at any time and seek emergency care. If you feel hospice is not managing symptoms well, you can call 911 and have your loved one treated. There is no penalty, and you can return to hospice later if you choose.

  • Do not think hospice is only for the last few days of life. Many families wish they had started hospice sooner, because the support—like a home health aide for bathing, free medical equipment, and 24/7 nurse access—can improve quality of life for months. Hospice is for anyone with a life expectancy of six months or less, but it can be used for longer if the doctor recertifies.

  • Do not force food or fluids if your loved one refuses. In late-stage Alzheimer’s, the body naturally shuts down, and forcing eating or drinking can cause choking or aspiration pneumonia. Hospice teaches that comfort includes moistening the lips with a sponge or ice chips, not forcing nutrition.

  • Do not hide your grief or try to be strong alone. Hospice includes bereavement support for family members for up to a year after the death. Talking with a counselor or joining a support group can help you process the decision and the loss. You are not a burden—you are a caregiver who deserves care too.

  • Do not compare your loved one’s death to what you see on TV or in movies. Real dying can involve noisy breathing, changes in skin color, and periods of restlessness. This is normal and does not mean your loved one is in pain. The hospice nurse can explain what to expect so you are not frightened.

Practical tools

  • The 'What If' Script for Talking with the Hospice Nurse

    Write down these questions and keep them by the phone: 'What if she stops breathing for a few seconds? What if he seems to be in pain but cannot tell me? What if she gets a fever? What if he becomes very agitated?' Ask the hospice nurse to give you specific instructions for each scenario, including what medication to use and when to call. This script turns fear into a plan.

  • The Comfort Care Checklist for the Home

    Print this list and post it on the refrigerator: (1) Hospital bed (ask the hospice nurse whether side rails are appropriate—never use them if the person might try to climb out unassisted; use only under professional guidance and with regular safety checks), (2) Over-bed table with a cup of ice chips and lip balm, (3) Soft blanket and favorite pillow, (4) Gentle music or audiobook player, (5) Dim lamp or nightlight, (6) Baby monitor or video camera, (7) Emergency contact list: hospice nurse, social worker, chaplain, (8) A notebook to log symptoms and medication times. Hospice provides most equipment free.

  • The 'Permission to Go' Phrase

    When your loved one seems to be holding on, sit close and say gently: 'It is okay to let go. We love you and we will be okay. You do not have to fight anymore.' Many caregivers report that their loved one passed peacefully within minutes of hearing these words. This phrase is a gift of release, not a command.

  • The Hospice Evaluation Request Letter

    If you are in a hospital and the doctor is resistant, you can say: 'I would like a hospice evaluation, please. I understand it is free and does not commit us. I want to understand all our options.' If the doctor still refuses, ask to speak with the hospital’s palliative care team or patient advocate. You have the right to request this evaluation at any time.

  • The 'Red Folder' for Medical Wishes

    Create a red folder (or any bright color) that contains: (1) A copy of the advance directive or living will, (2) A signed do-not-resuscitate (DNR) order from the doctor, (3) A list of current medications and allergies, (4) The hospice agency’s phone number, (5) A one-page summary of your loved one’s wishes: 'No IV fluids, no ventilators, no hospital transfers for life support.' Keep this folder by the front door or on the nightstand so emergency responders and hospice staff can see it immediately.

Discuss with your clinician

Ask the doctor: 'What is the estimated life expectancy based on my loved one’s current condition? Is it reasonable to expect six months or less?' This helps determine hospice eligibility.

Ask the hospice medical director: 'If we choose hospice, what specific medications will be available for pain, agitation, and breathing distress? Are there any risks of using these medications at home?'

Ask the primary care physician: 'Are there any reversible causes of my loved one’s decline—like an infection or medication side effect—that we should treat before deciding to forgo all hospital interventions?'

Ask the hospice nurse: 'What signs should I watch for that indicate my loved one is in pain or distress, even if they cannot speak? How do I know when to call you versus when to manage at home?'

Ask the social worker: 'What bereavement services are available for my family after the death? Can you connect me with a support group or counselor?'

Ask the doctor: 'Are side rails safe for my loved one? If not, what alternatives can we use to prevent falls?'

Ask the hospice nurse: 'What is the exact dose of morphine or other comfort medications, and when should I stop giving them? What are the signs of overdose or side effects?'

Ask the hospice team: 'What is the specific plan if my loved one tries to climb out of bed? What steps should I take to keep them safe without using restraints?'

Related guides

Sources