Unpredictable, variable, highly individual—these are some of the words people use to describe multiple sclerosis. One size does not fit all when it comes to hospice care for advanced MS. It is important to find a provider who understands the unique and highly personal needs of people with MS and the needs of family members.
The complexities of end-stage MS make it difficult to know with certainty when end-of-life care is appropriate. Medical advances are enabling many with MS to manage symptoms, but there may be a time when patients have extreme difficulty swallowing, breathing or recovering from infections.
Doctors use experienced clinical judgement and tools such the Karnofsky Performance Status Scale (PDF, 65 KB)to measure disability. If you or your doctor are considering a transition to hospice or palliative care, consultations are typically free and without obligation.
Conversations about hospice care may bring a flood of questions and emotions. Is it really time for hospice? How do we start the conversation?
The foundation of hospice care is built on understanding the most important needs and goals of the patient. Care begins with an intensive focus on managing pain and other symptoms. Patients and their families also receive practical and emotion support to reach their best possible quality of life.
Hospice is available to patients with a life expectancy of six months or less, as determined by your doctor and a hospice medical director. Once someone begins hospice, they can stop hospice services at any time and return to curative treatments. Hospice is available at home, in many nursing facilities and hospitals.
Important hospice benefits include:
- Managing pain to your needs and goals
- Hospice aides for personal care and light homemaking
- Hospice RNs to help reduce infections, pressure ulcers and other symptoms.
- Home medical equipment
- Medications to help manage anxiety and depression
- Dietary counseling and feeding support
- Breathing support and equipment
- Respite care for short-term relief for family caregivers
- Assistance with financial and legal affairs to ensure your wishes are respected
Palliative care helps people with MS feel better; physically, emotionally and spiritually. Care includes support and education for caregivers and family.
Patients and families have access to palliative care at any point during an illness. It’s especially helpful when someone needs extra help dealing with complex symptoms or planning for future care. Referrals can be made by a primary care doctor, neurologist, nurse or family member.
Hospice is covered by Medicare, VA benefits, Medicaid and most private insurance policies. These benefits offer patients the opportunity for a dignified end of life without an overwhelming financial burden. Medicare benefits covers all services related to the terminal illness. There are no co-pays or out-of-pocket expenses.
Know your options
It’s important to ask potential hospice or palliative care providers if they have experience with Multiple Sclerosis. End-of-life care for MS requires teamwork between you, your doctors and the hospice or palliative team. Be bold about asking the team to adapt the plan of care to your changing needs. The best hospice providers will address your most pressing concerns and help you with long-term care plans.
Talking about end-of-life care for MS is rarely easy. Some people delay hospice conversations because they’re hoping for one more remission. Hospice does not mean you’re giving up. It’s about making the final stages of life meaningful, pain free and dignified.
From the National Multiple Sclerosis Society