Hospice Care for People With End-Stage MS

MS is a condition that often gets worse over time. Eventually, you may reach a point where your disease is too severe and the complications too numerous to keep up a good quality of life.

That’s when your MS enters the end stage. Your thoughts may shift to tough topics like end-of-life care and how you want to spend your final days.

Most people with end-stage MS don’t die from it, but from related problems like trouble swallowing and breathing, or infections from pressure sores. And for many, that’s where hospice comes in.

What Is Hospice?

It isn’t a place. Hospice is 24/7 care that covers everything from wheelchairs and other equipment, to medication, to doctors and nurses on call around the clock during the final 6 months of MS.

You can get hospice in your home, an assisted living facility, or a nursing home. Hospice doctors and nurses help ease your pain and manage symptoms like bladder, bowel, and respiratory infections, choking risks, and blood clots. Emotional and spiritual support for the whole family is a big part of it, too.

The Right Time for Hospice

Even with end-stage MS, you or a loved one may be stable for a long time, then get worse, then stabilize again. This can make deciding on the right time to start hospice tricky.

Doctors often use certain tools like the Karnofsky Performance Status Scale to help measure the degree of your disability and to estimate your chances of survival. A score below 50% may mean that hospice care could help you.

Other signs that you may want to enter hospice include if you:

  • Lose a lot of weight
  • Have multiple serious health problems
  • Can’t do much for yourself
  • Have severe pressure sores that reach into your bones
  • Have trouble breathing or refuse ventilation
  • Want no more medical treatments

What Hospice Is Not

Hospice’s aim is comfort, or palliative, care, not a cure. Usually, this means you’ll shift from MS drugs and therapy to pain relief and services like nutrition or grief counseling. For example, hospice usually doesn’t cover medical treatments if you’re taken to the emergency room for problems not directly related to your MS.

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How to Talk About Hospice

Many Americans who might benefit from hospice never use it. The average person spends less than 3 months in hospice care.

A conversation about hospice may stir big emotions for everyone involved. It helps to know the goal, and the right questions to ask so you and your family can make the right choice:

  • How much pain is too much pain?
  • Where do you want to die?
  • Do you want family with you when you die?
  • How do you want to live out your last days?
  • Whom do you trust to make decisions about your care?

Find the Right Hospice

Because the terminal stage of MS is hard to define, some hospices may not accept people with this condition. But many do. Ask your doctor or your medical team for recommendations. You can also search The National Hospice and Palliative Care Organization’s website database for providers in your area.

Some hospice representatives will meet you and your family at home at no charge to explain their services and to answer questions.

Insurance

Medicare, Medicaid, and many private health insurers pay for hospice care for those with end-stage MS. You qualify for coverage if your doctor certifies that you likely won’t live for another 6 months. If you have Medicare, you pay nothing for hospice services, including any necessary stays in a hospital or an in-patient clinic. But Medicare won’t cover room and board if you get hospice in your home or if you live in a nursing home.

If you live longer than 6 months, your doctor can extend your hospice coverage by vouching that you’re still terminally ill. Medicare, the government health plan that pays for most of the hospice care in the U.S., allows an unlimited number of 60-day renewals.

WebMD Medical Reference Reviewed by Melinda Ratini, DO, MS on April 22, 2019

Sources

SOURCES:

National Multiple Sclerosis Society: “Advanced Care Needs,” “Talking About Palliative Care, Hospice and Dying,” “Caring for Loved Ones with Advanced MS: A Guide for Families.”

Multiple Sclerosis Trust: “End stage MS.”

Hospice Patients Alliance: “Karnofsky Performance Status Scale Definitions Rating (%) Criteria.”

Hospice Foundation of America: “What is Hospice?” “Starting the Conversation,” “Paying for Care,” “How to Choose a Hospice Provider.”

National Institute on Aging: “What Are Palliative Care and Hospice Care?”

MedlinePlus: “What is palliative care?”

National Hospice and Palliative Care Organization: “Find a Hospice,” “Regulatory Alerts: Proposed FY 2017 Hospice Wage Index and Payment Rate Update and Hospice Quality Reporting Requirements.”

Medicare.gov: “Your Medicare Coverage,” “How hospice works.”

American Hospice Foundation: “FAQ: How is Hospice Care Paid For?”

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