End-of-Life Planning and Hospice in New Jersey: A Guide for Families

By the care managers at Connections Care Management · Updated November 2026

What is hospice?

Hospice is a team approach to care for people with a serious illness who are no longer seeking treatment to cure it. The focus moves to comfort, dignity and time with the people who matter. Hospice also supports the family, before and after a death.

Most hospice care happens where the person lives: at home, in assisted living or in a nursing home. The hospice team visits on a schedule and is available by phone around the clock. Some hospices also have inpatient units for symptoms that cannot be managed at home.

What is the difference between hospice and palliative care?

• Palliative care focuses on relieving symptoms and stress of serious illness at any stage. It can be given alongside treatment meant to cure or control the illness, such as chemotherapy or dialysis.
• Hospice is a form of palliative care for people near the end of life who have chosen to focus on comfort rather than curative treatment for their terminal illness.

If your parent is seriously ill but not ready for hospice, ask the doctor about a palliative care consultation.

Who qualifies for hospice under Medicare?

In general, Medicare covers hospice when:

• Your parent has Medicare Part A.
• A hospice doctor, and your parent's own doctor if they have one, certify that your parent is terminally ill, with a life expectancy of six months or less if the illness runs its usual course.
• Your parent chooses comfort care instead of curative treatment for the terminal illness, and signs a statement electing hospice.
• Care comes from a Medicare-approved hospice.

Hospice is given in benefit periods. Your parent can keep receiving hospice beyond six months if a doctor recertifies that they remain terminally ill. Your parent can also stop hospice at any time, for example to try a new treatment, and can return later if eligible.

Medicare continues to cover care for conditions unrelated to the terminal illness. If your parent has a Medicare Advantage plan, hospice is generally still covered through Original Medicare. Confirm details with Medicare or the hospice.

What does Medicare hospice cover?

Hospice generally covers services related to the terminal illness, including:

• Nursing visits and a doctor's oversight.
• Hospice aide visits for personal care.
• Social work and counseling.
• Spiritual care, if wanted.
• Medical equipment such as a hospital bed, wheelchair or oxygen.
• Supplies such as bandages and incontinence products.
• Medications for pain and symptom control.
• Short inpatient stays to manage symptoms.
• Short inpatient respite stays so the family caregiver can rest.
• Grief support for the family.

What hospice generally does not cover: room and board in a nursing home or assisted living, round-the-clock aides at home, and treatment aimed at curing the terminal illness. Many families are surprised that hospice aide visits are limited. If your parent needs more hands-on help, the family may need to arrange private aides or other support.

When is it time to talk about hospice?

Many families wish they had started hospice sooner. Consider asking the doctor about hospice if your parent:

• Has been hospitalized or in the emergency room several times in recent months.
• Is losing weight and eating very little.
• Is sleeping most of the day or much weaker than before.
• Has a serious illness and treatment is no longer helping, or is causing more harm than good.
• Has said they do not want more hospital stays.
• Has advanced dementia with difficulty eating, frequent infections or inability to communicate.

A useful question for the doctor: "Would you be surprised if my mother died in the next year?" If the answer is no, it is time to talk about goals.

What questions should I ask a hospice provider?

Most areas of northern New Jersey have several hospices. You can choose. Ask:

• "How often will the nurse and aide visit at first? Can that increase if needed?"
• "How fast does someone come out at night or on a weekend?"
• "Who answers the phone after hours: a nurse, or an answering service?"
• "Do you have an inpatient unit, or contracts with local facilities?"
• "How do you handle pain and breathing problems?"
• "Do you have experience with dementia, heart failure, lung disease or cancer?" (Ask about your parent's condition.)
• "What support do you offer the family, during care and after a death?"
• "Do you have volunteers for companionship or to give the family a break?"
• "Do you work with my parent's assisted living or nursing home?"

What should be planned ahead?

• Advance directives. A health care representative and written wishes. In New Jersey, a POLST form signed with the doctor can turn those wishes into medical orders. See advance directives and POLST in NJ.
• Where your parent wants to be. Home, a care community or an inpatient hospice unit.
• Who will be there and how family will share caregiving.
• Legal and financial matters. A will, power of attorney, beneficiary designations and a list of accounts. Speak with an elder law attorney. We are not attorneys or financial advisors.
• Funeral and burial wishes. Some people prefer to make these arrangements themselves, which can ease the burden on family.
• What happens at the time of death. Ask the hospice to explain whom to call. With hospice, families usually call the hospice, not 911.

How do I talk with my parent about the end of life?

Often parents are more ready for this conversation than their children. Some openings:

• "What's most important to you right now?"
• "What are you worried about?"
• "If time is shorter than we hope, what would you want those days to look like?"
• "Is there anyone you want to see, or anything you want to say or do?"
• "What would you want us to remember?"

Let silence happen. You do not have to fix anything. Listening is enough.

What happens in the last days?

The hospice team will explain what to expect for your parent's illness, and you should ask them as many questions as you need. Common changes include sleeping more, eating and drinking very little, changes in breathing, cooler hands and feet, and periods of confusion or restlessness. Many of these are a natural part of dying and are not painful, but the hospice nurse can help with any distress. Keep the hospice number by every phone, and call them, day or night, when something changes or worries you.

Many families find comfort in small things: soft music, a favorite blanket, reading aloud, quiet stories, holding hands. Hearing may remain even when your parent cannot respond, so keep talking to them.

What about a parent with dementia?

Advanced dementia is a terminal illness, though families are not always told that clearly. People with late-stage dementia may qualify for hospice when they show signs such as difficulty swallowing, weight loss, frequent infections and loss of speech or mobility. Hospice can help avoid repeated, distressing hospital transfers and focus on comfort. Our dementia care guide covers the later stages.

How do families care for themselves?

This is a time of great love and great strain. Take the hospice up on the support it offers, including social workers, chaplains, volunteers and respite stays. Let friends help with meals and errands. Family disagreements often surface at the end of life. A neutral person can help everyone focus on your parent's wishes. Our respite care guide and caregiver burnout guide may help.

How does Connections Care Management help at the end of life?

We walk alongside families through this stage, working with the hospice team, not instead of it.

• Through medical advocacy, we help families have honest conversations with doctors about prognosis and goals, and make sure wishes are followed.
• Our care planning helps families think through where care will happen and who will provide it, and we lead family meetings when there is disagreement.
• With in-home care coordination, we arrange extra help at home beyond what hospice provides.
• For families far away, our long-distance caregiving support means someone you trust is there and keeps you informed.

We serve northern New Jersey and Rockland County, NY. Contact us for a free first conversation.