Long-Term and Hospice Care for People with MS

Articles On MS Resources & Caregiving

MS is a condition that often gets worse over time. You may need more and more help to take care of yourself and everyday tasks. 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.

You can make things easier on yourself and your loved ones by giving careful thought to where and how you want to live, well before it’s time to make a change. That will give you time to do your research and put your plans in place.

What Is Long-Term Care?

If you need round-the-clock care, a nursing home may be a good choice. They usually offer two types of care:

• Basic care includes help with everyday tasks like bathing, eating, and getting around.
• Skilled care includes help from trained health professionals, like a registered nurse, physical therapists, occupational therapists, and respiratory therapists.

Services often include room and board and social and recreational activities, as well as 24-hour emergency care.

Choosing a nursing home is a huge decision. You’ll want to get recommendations, find out everything you can online and over the phone, and visit several before you pick one. Here are some things to consider:

• Facility. Does it offer the kind of care you need? Is it properly licensed? Does it seem clean, inviting, and well-maintained? Does it have doorways wide enough for a wheelchair, handrails, and other safety features you need with MS? Does it offer social and recreational activities that interest you?
• Admission. Is there a waiting list? What are the requirements for admission? Do residents have a written care plan? How often are residents reevaluated?
• Financial concerns. What’s included in the base fee, and what services cost extra? How do they handle billing and payment? Do they work with Medicare, Medicaid, or long-term care insurance? Have fees gone up lately?
• Staff. Do they have experience with MS? Are they willing to work with your current care team? How available are they? How do they interact with residents?
• Medication and health care. What’s the policy on storing medication and helping residents take it? How do they coordinate therapy visits? Does a doctor or nurse visit the residents regularly to give checkups? How do they handle an emergency?
• Food service. What’s the food like? Do they accommodate special diets? Where and when do residents eat? If residents need help eating, is someone available?

What Is Hospice?

When your MS enters the end stage, you’ll want to be ready for tough decisions about 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.

Hospice isn’t a place. It’s 24/7 care that covers things like wheelchairs and other equipment, medication, and 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, get worse, and 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.

Palliative Care

This is care that helps you deal with the symptoms and effects of your disease rather than its progression. You’ll likely get palliative care throughout your journey with MS, and this includes if you enter hospice. Typically, palliative care includes medication, therapy, massage, and other techniques that help:

• Relieve muscle spasms
• Calm nerves
• Ease depression
• Lessen pain
• Improve vision problems
• Lessen walking problems
• Manage or improve mental health
• Deal with tingling and numbing
• Help with evolving family and social issues

MS symptoms can vary quite a bit, but palliative care teams are prepared with a large toolbox that can treat a wide variety of issues. Talk to your care team about any pain or other symptoms that concern you.

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.

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