Some diseases and conditions cannot be cured. While many patients choose to continue aggressive treatment to the very end, others opt to receive hospice care, an ultra-specialized mix of medical and social services.
To be eligible for hospice, you must have a terminal condition with a life expectancy of fewer than six months, as certified by a physician. This team-based, multidisciplinary care supports both patients and their loved ones. Hospice aims for the relief of pain and distress, addresses psychological and spiritual needs, and provides the best quality of life possible.
Here’s what you need to know about hospice care.
What kind of care does hospice provide?
Traditional medical care focuses on curing disease or stabilizing chronic illnesses. Again, hospice care is designed to provide the best quality of life for whatever time the patient has left. Pain management and making the sick person as comfortable as possible is essential, of course, but hospice also includes the following services:
- Skilled nursing services
- Personal care services
- Homemaker services, if needed
- Physical, speech or occupational therapies
- Prescription drugs, as needed for pain and other symptoms (but not for drugs aimed at curing the condition)
- Medical supplies and durable medical equipment
- Nutrition or dietary counseling
- Respite care (short-term inpatient stays, to give caregivers a break)
- Other short-term inpatient care (if symptoms cannot be addressed at home)
- Emotional support
- Spiritual support, if requested
Hospice nurses and aides can suggest ways to make your home as safe as possible, such as installing grab bars in the bathroom and making sure that rugs and mats are non-skid. These healthcare specialists can also help family and friends provide the right kinds of care. Few people have experience with serious illness, after all.
Hospice workers can show you how to lift a patient without hurting your own back, or how to care for a wound site. The team makes sure the hospice patient has the right healthcare supplies. Its members can provide emotional support and grief counseling not only to the sick person, but also to caregivers.
Is hospice care always in the patient’s home?
Typically care is provided in a patient’s home, but not always. Hospice care is given wherever the patient lives. Sometimes this means a skilled nursing facility, a hospital or a hospice facility.
Who’s on the hospice team?
The members of a hospice team can vary depending on a patient’s condition but often include the following:
- A hospice doctor (the patient’s primary medical physician may also be involved)
- Physical therapists and other medical therapists, as needed
- Hospice aides
- Social workers
- Hospice volunteers
- Clergy or others who can counsel the patient and family members
Are family members expected to provide care?
Whether family members provide care depends on what they are capable of and comfortable doing. For example, you might not be able to administer injections or lift the patient in and out of the bathtub. If you can’t, then hospice’s visiting medical professionals will handle these types of care.
Not all care is physical care, however. Family members and friends can typically handle chores like paying bills, taking care of the house and yard (or arranging to have it done), picking up prescriptions, coordinating appointments and driving the patient to them, dealing with medical paperwork and answering calls from others who want to check in on the sick person.
Talk with hospice workers about what help you can reasonably provide.
[ Read: What is Palliative Care? ]
What if family and friends need a break?
When hospice team members talk to you about self-care, listen to them. Caregiver burnout is a real possibility, even if home health aides are doing much (or all) of the physical care. Fortunately, there’s a system in place for respite care.
Family and friends can request a few hours or even a few days off from caregiving duties. For longer respite periods, the patient will be required to stay in a Medicare-approved facility. A member of the hospice team can help arrange for this.
Medicare will cover up to five days at a time of inpatient respite care. The patient may have to pay for up to 5% of respite care costs.
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Medicare and hospice
If you have Medicare Part A and have been certified as having fewer than six months to live, you qualify for hospice coverage through Medicare. You must agree to pursue palliative or “comfort” care rather than treatment designed to cure your illness.
Your out-of-pocket costs will be as follows:
- Nothing for hospice care;
- A co-payment of $5 or less for prescription drugs for pain and other symptoms. (Rarely, a hospice benefit doesn’t cover a drug. In that case, Medicare Part D coverage might.); and
- Up to 5% of costs for inpatient respite care.
What Medicare won’t cover in hospice
After your hospice benefit begins, Medicare will no longer cover certain items, including the following:
Treatment intended to cure your condition. Hospice is about palliative care, not curative care. However, you may leave hospice at any time if you decide to fight the illness.
Prescription medication aimed at curing your illness. See above.
Any non-hospice team care. Treatments must be provided or arranged by the hospice provider you selected. You can continue to see your primary care physician as long as that doctor is part of the team.
Select hospital care and transportation. Outpatient care (such as the emergency room), an impatient stay or ambulance service won’t be covered unless it is arranged by the hospice team or unrelated to your terminal condition.
Room and board. If you live in a nursing home or opt for a hospice facility, Medicare doesn’t cover the costs of staying there—just the treatment you receive. However, if it’s determined you need a temporary hospital stay or one of those short-term respite care stays at a Medicare-approved facility, the hospice team can arrange for Medicare to cover it. Again, you may be charged a small co-pay for respite care.
Speaking of payment: You must go through the hospice care team to arrange or provide care. Fail to do this and you may be on the hook for the full cost.
Medicare Advantage and hospice
Medicare Advantage lets people age 65 and older get their Medicare coverage from private insurers rather than from the U.S. government. Even if you’re in a Medicare Advantage plan, it will be original Medicare that covers the expenses related to your terminal illness.
You can stay in the Medicare Advantage plan if you like, and it will continue to cover medical services that aren’t related to your terminal illness or any conditions stemming from that illness. Or you can have those unrelated services paid for by original Medicare.
You must keep paying the Medicare Advantage premiums to stay in the plan, and you must also pay any co-insurance amounts. In the event that you leave hospice, Medicare Advantage coverage won’t start up again until the first day of the following month.
Why would someone leave hospice?
Sometimes a disease goes into remission, or a patient decides to go back into treatment for the illness. You have the right to leave hospice at any time.
In some cases a terminal disease or condition will take longer than six months. If so, you can choose to leave hospice for a time. Or, you can ask your physician to re-certify that you are still terminally ill and in need of hospice care.
How to choose a hospice program
You must use a Medicare-approved hospice program if you want the costs to be covered. Get recommendations from your doctor, your state health department or hospice organization. Medicare has a tool that lets you search for approved hospice programs by zip code.
CaringInfo.org, a program of the National Hospice and Palliative Care Organization (NHPCO), provides a list of questions to ask hospice care providers. The program also has a downloadable worksheet to help you choose a program.
A few other factors to consider:
Ask whether the hospice program has done a self-assessment based on NHPCO’s “standards of practice for hospice programs.” If it has, request a copy.
To be Medicare-approved, hospice programs must meet federal regulations. States also license hospices. Ask to see the latest state and federal inspection reports.
Family satisfaction surveys are commonly used by hospices. Request a summary of their scores for the past few months. You might also ask for a list of complaints from the past year.
The bottom line
It’s hard to accept that a loved one’s illness cannot be cured. But that person’s decision to forgo life-prolonging measures must be respected.
If it’s your own health that has declined to the point where nothing more can be done, you can decide to keep fighting. However, this decision should be yours—that is, what you want rather than what you think your family wants.
The choice to enter hospice is intensely personal. Doing so acknowledges that you are approaching the final stage of life, with open eyes and an open heart. The medical and emotional support helps you and your loved ones be present for one another, affirming your life until it is fully over.
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