Palliative care with Parkinson’s disease or ALS: symptoms, decisions and support

Parkinson’s disease and ALS are different illnesses that ask a lot of the same people. Both change how a person moves, speaks and swallows. Parkinson’s usually unfolds over many years; ALS moves faster and brings big decisions early. In both, a neurologist treats the disease, and a palliative care team can look after everything around it: pain, mood, sleep, the family, and the plans that are easier to make before they’re urgent. This note explains what palliative care adds for each, what the research found, and the Medicare rules that matter.

The short answer

• People with Parkinson’s can benefit from palliative care at any stage, and the Parkinson’s Foundation says it would ideally be provided from diagnosis on.¹
• In a 2020 trial of 210 people with Parkinson’s and related disorders, those who added palliative care to their usual care had better quality of life after six months.²
• ALS weakens the muscles for moving, speaking, swallowing and breathing; most people with ALS die from respiratory failure, usually within 3 to 5 years of the first symptoms, and about 10 percent live 10 years or more.³
• People with ALS get Medicare Part A and Part B the month their Social Security disability benefits begin,⁴ and since a law signed in December 2020 there’s no five-month wait for those benefits.⁵
• Palliative care is not hospice; hospice is one part of palliative care, for the end of life.¹

Parkinson’s: more than movement

The Parkinson’s Foundation describes palliative care, also called supportive care, as care that treats the whole person instead of the disease. It addresses physical, social, emotional and spiritual needs to improve quality of life.¹ Its key elements include:

• Addressing care partner needs¹
• Managing pain¹
• Emotional and spiritual support¹
• Annual conversations about advance care planning¹

The foundation adds that palliative care can mean less pain and fewer other symptoms like constipation. If the care team doesn’t offer palliative care in the office, a social worker can help find it, and most insurance plans cover all or part of the cost.¹

What the Parkinson’s trial found

In a randomized trial published in JAMA Neurology in 2020, researchers at three academic medical centers followed 210 people with Parkinson’s disease and related disorders, and 175 of their caregivers, for a year.² One group had standard care from a neurologist and a primary care doctor. The other had the same care plus a team of a chaplain, a social worker and a nurse working from a palliative care checklist, seen in person or by video every three months.²

After six months, the people who had palliative care had better quality of life, a lighter symptom burden, less grief and more advance directives completed, and their movement symptoms improved too. Their caregivers had less anxiety.² As the foundation put it, not a single outcome measure favored standard care alone.²

ALS: decisions that come early

ALS, also called Lou Gehrig’s disease, damages the nerve cells that control the muscles a person moves on purpose. The muscles weaken, and moving, swallowing and speaking get harder. As the muscles of the chest and diaphragm weaken, breathing may need support.³ The senses aren’t affected, and the mind and personality usually aren’t either, though some people have trouble finding words, making decisions or remembering.³

There is no cure. Support for breathing can ease breathing problems and may prolong survival, though it doesn’t slow the disease, and in time some people consider a ventilator.³ Other medicines can help with stiffness, pain, panic and depression, and physical and occupational therapy may help keep joints moving and slow muscle weakness.³

That’s why palliative care belongs early in ALS. Decisions about breathing support and nutrition go better while the person can still say clearly what they want, and a team that knows them can help the family carry those wishes through.

Medicare and disability with ALS

People with ALS automatically get Medicare Part A and Part B the month their Social Security disability benefits begin.⁴ On December 22, 2020, the ALS Disability Insurance Access Act was signed, ending the five-month waiting period for disability benefits for people with ALS, for applications filed after it became law.⁵ Questions go to Social Security at 1-800-772-1213.⁴

Care at home

When a person is homebound and needs skilled nursing or therapy, Medicare home health can bring it to the house, and you pay nothing for covered home health services.⁶ Parkinson’s disease at home covers medicines on time, falls and swallowing, and Palliative care at home explains how home visits work.

When hospice fits

Palliative care isn’t hospice or end-of-life care; hospice is a subgroup of it.¹ When the illness reaches its last months, hospice can take over at home. Who qualifies for hospice? explains the guidelines doctors use for neurological illnesses, among others.

Questions to ask the neurologist

• Is there a palliative care team that works with your clinic?
• Which symptoms besides movement should we watch, and who treats them?
• For ALS: when should we talk about breathing support and a feeding tube?
• What should we put in writing now, while the decisions are still ours to make?
• What help is there for the person caring at home?