When to call hospice — recognizing the transition

Disclaimer: This article provides general information about hospice and when it might be appropriate. It does not constitute medical advice. Decisions about hospice should be made in consultation with your parent's healthcare team, your family, and your parent if they are able to participate. Only a physician can make the determination that someone is appropriate for hospice care.

You keep hoping treatment will work. You keep thinking there's one more thing the doctor can try, one more medication, one more specialist. Your parent is declining, but you're not ready to admit that recovery isn't coming. The idea of calling hospice feels like giving up, like you're abandoning hope, like you're saying goodbye. So you don't. You wait. And sometimes waiting means missing the window when hospice could have provided comfort and supported your parent's transition in the way they would have wanted.

Calling hospice isn't giving up. It's shifting from trying to cure an illness that cannot be cured to ensuring that the time remaining is comfortable and meaningful. It's accepting reality and using resources to make that reality as good as possible. It's one of the hardest decisions you'll make as a caregiver, and it's also one of the most loving.

What Hospice Is

Hospice is a type of care designed for people with serious illnesses that are no longer responding to treatment. It focuses on comfort rather than cure. It uses medications and other interventions to relieve pain and other symptoms. It supports the person emotionally and spiritually. It supports family members. The goal is to help the person live as fully and comfortably as possible during the time they have remaining.

Hospice is provided by a team that includes doctors, nurses, social workers, chaplains or spiritual advisors, and trained volunteers. They provide care in the person's home, in nursing facilities, or in dedicated hospice centers, depending on the setting and the person's needs.

Hospice care is usually covered by Medicare and many insurance plans. It can be affordable or free in many cases. Not being able to pay should not prevent you from accessing it if it's appropriate.

The Medical Criteria

A doctor must certify that your parent has a life expectancy of six months or less if their illness takes its natural course. This doesn't mean they'll definitely die in six months. Some people live longer. But the medical judgment is that their illness is advanced and not curable.

The focus shifts from interventions like chemotherapy, surgery, or aggressive medications to comfort medications. Life-extending treatments stop. The focus becomes symptom relief.

Usually, your parent must understand that the goal is comfort care, and they must consent to hospice (unless they lack capacity, in which case family or a legal representative consents on their behalf).

Signs That Hospice Might Be Appropriate

Your parent has advanced disease that's not improving despite treatment. Disease progression is clear, and recovery isn't expected.

Your parent is very weak and confined to bed or chair most of the day. Functioning has declined significantly.

Your parent is having difficulty eating or swallowing. Appetite has declined substantially.

Your parent is experiencing pain, shortness of breath, or other difficult symptoms that you're struggling to manage.

Your parent is confused, especially if this is new and progressive.

Your parent has recurrent infections or other complications of advanced disease.

Your parent or family members are questioning whether aggressive treatment still makes sense.

Your parent has explicitly stated that they don't want aggressive treatment and would prioritize comfort.

The medical team has suggested that aggressive treatment isn't likely to be beneficial or that your parent might want to focus on comfort care.

The Conversation With Your Doctor

Ask your doctor directly: "Based on my parent's condition, is this something that will get better?" Listen to their answer. If they say recovery isn't likely, ask: "What's a realistic time frame for how long they might live?" If they say weeks to months rather than years, that's important information.

Ask: "Are there treatments that might help extend life?" and "What would the benefits and burdens of these treatments be?" Sometimes a few extra weeks with significant suffering isn't something your parent would want.

Ask: "Would hospice be something to think about?" If your doctor seems hesitant, ask why. Would they be willing to refer to hospice? If they're uncomfortable with this conversation, you might need to be more direct: "I think my parent might be nearing the end. Can you help me think about whether hospice would be appropriate?"

Many doctors are uncomfortable discussing mortality and hospice. This is unfortunate because your parent deserves this conversation. If your doctor won't have it, consider asking for a different doctor or requesting a palliative care specialist who can discuss comfort-focused care.

Talking With Your Parent

If your parent has capacity to make decisions, they need to be part of this conversation. This is their life and their death. Their preferences matter more than anyone else's.

Some parents will be ready to talk about mortality. Others will be in denial. Both responses are understandable. Your job is to provide information and to honor their autonomy, not to force acceptance.

Start by assessing what they understand. Ask: "What have the doctors told you about your illness?" Listen to what they believe. Ask: "What's most important to you as your illness progresses?" This might be comfort, being at home, having family present, or other things. Understanding their priorities helps guide decisions.

If they're open to it, have a conversation about what they want if their health declines further. "If a time comes when treatment isn't helping, what would be important to you?" Some people want to focus on comfort. Others want to keep trying. Their preferences should guide the plan.

Be honest but kind. "The doctors think your cancer is getting worse despite treatment. They're concerned that aggressive treatment might cause more suffering without helping you get better. They've suggested we might want to think about focusing on making you comfortable instead of treating the cancer." This opens space for conversation without being cruel.

If your parent doesn't want to discuss it, don't force it. You can still move toward comfort-focused care and can make decisions with the medical team if your parent becomes unable to do so.

When Your Parent Lacks Capacity

If your parent cannot make decisions, you're making them on their behalf. This is a heavy responsibility. Base decisions on what you believe your parent would want if they could tell you. What did they say when they had capacity? What values have they expressed? What does the pattern of their life suggest about what matters to them?

Talk with family members. Discuss what you think your parent would want. Make sure the decision is as informed and as aligned with your parent's values as it can be.

Ask the medical team for guidance. They can help you think through what's realistically possible and what will truly benefit your parent.

Know that in most places, you have the legal right to make healthcare decisions for your parent if you have legal authority (healthcare power of attorney, guardianship, or other mechanism). If you don't have legal authority, you might need to pursue it or work with the medical team to make decisions even without formal authority.

Making the Call

Asking for a hospice referral is simple. Tell your doctor: "I'd like to talk about whether hospice would be appropriate for my parent. Can you provide a referral?" Your doctor can refer to a hospice program. You can also contact a hospice program directly and request an evaluation.

When hospice comes for an evaluation, they'll assess your parent's condition, understand their symptoms and needs, and discuss how hospice might help. If everyone agrees it's appropriate, the evaluation leads to enrollment.

This doesn't mean your parent is immediately dying. It means the focus is on comfort and quality of life. Your parent can still work with their doctor. Hospice works alongside the regular doctor. If things change and your parent seems to be getting better, they can leave hospice. But usually, once enrolled, hospice provides care until the end.

What Happens Next

Hospice visits your parent regularly, usually weekly but more often if needed. The team assesses pain and symptoms and adjusts medications to keep your parent comfortable. They provide nursing care, support, and access to specialized help.

Your parent can stay at home if that's what they prefer, or they can go to a facility if that becomes necessary. Home care is often preferred and is usually what hospice supports.

Hospice supports family members too. Social workers and chaplains help you process what's happening. Volunteers can help with visits or tasks. Grief counseling is available. After your parent dies, hospice provides bereavement support for the family.

The Relief and the Grief

When you finally call hospice, you might feel relief. You can stop fighting the unfightable. You can stop making decisions based on what medical technology can do and start making them based on what makes your parent comfortable and content. This relief comes with grief. You're acknowledging that your parent won't recover. You're accepting what you've been fighting against. Both feelings are valid.

You might worry you're doing something wrong. You might worry about what people will think. You might feel like you should keep trying. These doubts are normal. Take them to your doctor or to the hospice team. Let them reassure you that comfort-focused care is appropriate and good.

The Gift of Hospice

Hospice isn't the end of caring. It's a different kind of caring. You're no longer fighting illness. You're creating comfort. You're creating space for meaningful time together. You're helping your parent die well, which might be the most important thing you can do at the end.

The days or weeks or months with hospice might be some of the most real and connected time you have with your parent. When you're not focused on treatment and cure, you can just be together. You can talk. You can sit quietly. You can love each other in simple ways.

Calling hospice is one of the hardest things you'll do as a caregiver. It's also one of the most loving. It says you see your parent's reality. You accept what's coming. You want them to be comfortable and to have the time they have left be good. That's deep caregiving. That's love.

Disclaimer: This article provides general information about hospice and when it might be appropriate. It does not constitute medical advice or guidance about individual decisions. Hospice appropriateness and timing should always be determined by qualified healthcare providers in consultation with the patient and family. Medicare and other insurance requirements for hospice coverage vary. If you have questions about whether hospice is appropriate for your parent's situation, discuss this with their healthcare providers.