Choosing Hospice Under Medicare

Quick summary

Medical treatment during a person's final months of life can be extremely -- and unnecessarily -- invasive. People move from home to hospital to nursing facility and back again, often without any realistic hope of slowing the fatal illness. Hospice stops this cycle by ending treatment altogether and instead focusing on controlling the patient's pain and other symptoms, and providing comfort and peace of mind for both the patient and the patient's family.

If your parent is nearing the end of life and it seems that she's needlessly going through painful or discomforting treatments that have no real hope of helping her, talk with her and her doctors about hospice as an alternative. If your parent chooses hospice, Medicare Part A pays nearly the full cost.

What is hospice?

Hospice is an alternative to regular medical care for people who are in the final months of life. Instead of continuing to try curing or delaying the fatal disease or condition, hospice ends treatment altogether. Instead, its goal is to control pain and other symptoms and make the patient's last stretch of life as comfortable as possible. Hospice can result in a significant improvement in your parent's quality of life, with a focus on her as a person rather than on her disease.

If your parent chooses hospice, it means she can leave the hospital or nursing facility and spend her last weeks or months in her own home, or in your home or another family member's. Hospice caregivers are specially trained to carefully calibrate pain medication and other symptom relief so that your parent is as comfortable as possible and able to appreciate the time she has left with loved ones. Because hospice caregivers work wherever your parent is staying, they can also bring relief to you and other family members who are providing most of your parent's daily care. Hospice can even move your parent into a special hospice facility for a few days of what is called "respite care," giving you and others in the family a short break from caregiver duties.

When and how can my parent choose Medicare hospice?

If your parent is enrolled in Medicare Part A and meets certain conditions, she may choose to receive Medicare-covered hospice care. To qualify, her treating physician must certify that she has a terminal illness and that she probably has less than six months to live. Of course, doctors usually can't predict exactly how long someone will live. And doctors are sometimes reluctant to say what they think about life expectancy. So Medicare builds in a protection in case the prediction proves wrong -- if your parent chooses hospice but lives longer than six months, hospice can be continued as long as she needs it. Or, if her condition stabilizes or even improves, she can give up hospice and return to regular Medicare coverage.

The other condition is that your parent must formally give up any further treatment of her terminal illness or condition. This "giving up" may be very difficult, both for you and your parent. But recognizing the futility of further treatment is an essential part of the transition to hospice and is necessary for hospice to bring maximum relief and comfort to your parent.

Does choosing hospice mean my parent gives up all medical treatment?

By choosing hospice, your parent gives up all treatment of her terminal illness or condition. But that doesn't mean she gives up treatment -- and Medicare coverage -- for any other illness or condition that might trouble her during her last months of life. If she gets the flu or has trouble with her back or has any other medical problem, she can receive treatment from her doctors and have it covered by Medicare Part B in the normal way.

Is choosing Medicare hospice a decision my parent is stuck with?

There are several reasons why your parent eventually might want to discontinue hospice care. She might simply change her mind about giving up treatment, or her doctors might advise her about a new treatment. Her condition might stabilize or even improve, changing the doctor's prognosis about how long she has to live. Or for some reason she might not like hospice care and prefer to return to regular Medicare coverage (which still allows her to refuse any specific treatment she doesn't want). For any of these reasons -- or for no reason at all -- your parent can end hospice care at any time and return to regular Medicare coverage.

What services does Medicare hospice offer?

Hospice is provided by a Medicare-certified agency that can offer your parent a variety of services. These are carefully coordinated within a plan of care developed by the hospice agency in cooperation with your parent's doctor. The specific services provided depend on your parent's particular needs and preferences and can include:

• Medical personnel. A hospice physician, in consultation with your parent's doctor, develops an initial hospice care plan. After the plan is in place, you and your parent won't see much of either doctor, except for problems other personnel cannot handle. Special hospice nurses are often involved in the initial period of adjustment to hospice care, along with a physical therapist, and a nurse is likely to oversee ongoing care.
• Personal aides. Most of the care your parent receives through hospice comes from specially trained hospice aides. Aides monitor your parent's symptoms and perform tasks to make her comfortable, including administering pain relief and other medications. They can also help with simple household tasks, though they don't provide general housekeeping services. An aide comes as often as needed, and toward the end, an aide may spend several hours every day with your parent.
• Counseling. Hospice makes various kinds of counseling available, not only to your parent but also to you or other family members. A social worker may be available to help with arrangements and paperwork regarding financial and estate matters and end-of-life decisions. Counselors and clergy are also available to help your parent and your family deal with emotional issues.
• Medication and equipment. Hospice provides your parent with any drug she may need -- for pain and other symptom control, sleep, mobility, digestion -- to keep her as comfortable as possible. Hospice provides the medications directly, without the need to go to the pharmacy, get a special prescription, or use insurance coverage. The same is true for medical equipment such as a hospital bed, wheelchair, walker, or the like.

Does hospice provide any relief for me or my parent's other caregivers?

Hospice attends not only to your parent but also to the needs of you and your family. The physical and emotional toll of caring for your parent can become enormous, especially if only one or two people are doing most of the round-the-clock care giving. A special feature of hospice, called "respite care," gives you and other primary caregivers a break by moving your parent to a special hospice facility where, for up to five days, she gets 24-hour daily care. There can be more than one of these respite periods during your parent's time with hospice. Respite care does not happen automatically; you or your family must specifically request it from the hospice agency.

How does Medicare hospice actually work once my parent chooses it?

If your parent and her doctor agree that hospice is the right choice, you need to help her choose a hospice agency. Her doctor or a hospital or nursing facility discharge planner may recommend one. If your parent lives in a senior residence or an assisted living or long-term care facility, the facility can recommend one or more hospice agencies. You can also find out about all nearby hospice agencies by contacting your state's hospice association; you can get the number from the National Hospice and Palliative Care Organization or the Hospice Association of America.

Once your parent chooses a hospice agency, she must formally enroll in it. The agency handles all the paperwork. If your parent is not physically or mentally able to give consent, enrollment must be made by the person who has power of attorney or other authority over your parent's healthcare decisions.

The hospice agency begins by setting up a care plan. This includes discussions with your parent and with any family members or others who will be regularly providing her with full-time care. It also involves a visit wherever your parent will be staying. There's usually a flurry of activity when the hospice agency first gets involved, with various hospice staff visiting your parent and assessing her needs. Then a regular routine is established, with one or more aides visiting your mother on a schedule. This schedule changes as your parent's needs change.

It's important for you and your parent to speak up about things you like and don't like about the care she's receiving, including asking the agency to send (or not send) one aide or another if your parent develops a strong preference. You may even switch to another agency altogether if you or your parent are not satisfied with the care she's receiving.

Your parent's need for hospice is evaluated after 90 days to determine if it is still appropriate. It's evaluated again at the end of another 90 days and can be continued in 60-day segments after that. Although intended only for a six-month period, hospice often lasts longer than that because many people live longer than the original six-month prognosis.

Does my parent have to pay anything for Medicare hospice?

Medicare-sponsored hospice provides very intensive, high-quality care almost for free. Medicare pays the hospice agency directly for your parent's care. Your parent is responsible only for up to five dollars for each prescription medication provided by hospice and a copayment of 5 percent of what Medicare pays for the days your parent is a hospice inpatient while you and your family take advantage of respite care .

How does hospice care affect any other medical insurance coverage my parent has?

Even if your parent enrolls in hospice, she should keep up her premium payments for Medicare Part B medical insurance and her medigap insurance policy, if she has one. If she is enrolled in a Part C Medicare Advantage plan instead, she should keep paying that premium. That's because she'll want to continue coverage for other medical needs she may have while she's in hospice. And she won't want any interruption in coverage if she decides to leave hospice for any reason.