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.
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.
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.
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.