In terms of neurological diseases, palliative care is beneficial for patients with a progressive incurable disease.
Progressive, incurable neurological diseases include ALS (amyotrophic lateral sclerosis), MS (multiple sclerosis), and Parkinson’s disease, among others.
Neurological diseases decrease the patient’s functional capacity and cause a variety of symptoms and needs for support.
Amyotrophic lateral sclerosis (ALS) is the most common neuromuscular disease that severely impacts functional capacity. About 200 new cases are diagnosed in Finland per year; in total, there are about 400 to 500 patients with ALS in Finland. Patients with ALS are mostly middle-aged or older. Familial amyotrophic lateral sclerosis (FALS) is a hereditary form of the disease that may have a younger age of onset and slower progression.
The disease causes muscle weakness by damaging nerve cells that control movement, but doesn’t affect the function of other organs. The first symptoms of ALS may affect either the limbs or the throat and neck (also known as “bulbar” symptoms). In limb-onset cases, first symptoms often include muscle weakness in the limbs or clumsiness. Bulbar-onset ALS often begins with speech or swallowing problems. While limb-onset ALS is more common, both types of symptoms appear in both forms as the disease progresses.
The progression of ALS varies from one individual to another; there is no cure. It’s difficult to predict how the disease will progress in each individual case. The average life expectancy after diagnosis is 3 to 5 years, but in some cases, the progression is slower, and the patient may live for more than 10 years. The only medicine currently in use is riluzole, which slows down the progression of the disease to some degree.
Since ALS is a complex disease, it may be difficult to diagnose, and reaching a diagnosis might take a long time. The long diagnosis process is often mentally exhausting, both for the patient and for their loved ones.
As muscle weakness progresses, moving around and performing everyday tasks becomes challenging. There are many mobility aids available, from rollator walkers to electric wheelchairs. Various small aids and accessories, such as ankle braces, may also be helpful in everyday life. Making sure that the home is accessible allows the patient to live independently at home for longer. As the patient’s needs for support increase, home care services and a personal assistant may support their ability to cope. Physical therapy plays an important role both in maintaining functional capacity and in symptom management.
As speech problems increase, the patient may need communication devices such as computer programs, electronic speech-generating devices, and alphabet boards.
The diagnosis is mentally taxing for both the patient and their loved ones. It may involve depression and insomnia, which can be managed both with appropriate medications and without medication. Talking about your symptoms and things weighing on your mind with the doctors, nurses, and therapists involved in your care is a part of the care process. Peer support may also be helpful.
While a small percentage (less than 10%) of patients develop dementia, some people also experience mild memory problems. In such cases, it’s important to let the doctor know. In case of cognitive decline, it’s important to make an advance care plan ahead of time.
Sometimes ALS involves difficulties with controlling emotions, such as uncontrollable yawning, crying, or laughter. This can be socially challenging. It may be possible to relieve these symptoms with medications.
As the illness progresses, it becomes more difficult to swallow saliva. This may lead to increased drooling, which can have a negative impact on quality of life. Excess saliva can be controlled with medications that decrease saliva production. A suction device may also be helpful for some patients. In some cases, severe drooling is reduced with botulinum toxin injections or with radiation therapy targeting the salivary glands.
As swallowing becomes more difficult, so does eating. At first, modifying food consistency and working with a speech therapist for swallowing therapy may be enough. As the illness progresses, it’s possible to place a feeding tube (PEG). The PEG tube is placed into the stomach in an endoscopic procedure. The tube can be used to give the patient food, fluids, and medicines, but it doesn’t prevent the patient from eating “normally” by mouth as well, if they are still able to swallow.
It’s advisable to discuss nutritional support and the possibility of a feeding tube while still in the earlier stages of illness. At the end of the day, whether or not to get a feeding tube is the patient’s personal decision. As the illness progresses, patients with a feeding tube also have the right to refuse tube feeding.
The progression of ALS is highly individual, but over the course of the illness, almost all patients experience weakness of the muscles used for breathing.
Assessment and examinations related to respiratory failure take place at a clinic for pulmonary diseases. Some patients may benefit from mechanical ventilation therapy using a mask (non-invasive ventilation, or NIV); a doctor specialised in lung diseases will assess whether this is needed. Patients receiving mechanical ventilation therapy must be able to remove the mask independently if needed. If deemed necessary, it’s also possible to get an oxygen concentrator that can be used at home. Additionally, shortness of breath can be relieved with medicines as well as with various non-medication treatments.
Coughing may become more difficult, leading to a build-up of mucus in the lungs. Problems with mucus are treated with respiratory physical therapy, medications, and with the help of a suction device. In addition, coughing and mucus may be relieved with the use of a hand-held bag valve mask.
While still in the early stages of the illness, it’s advisable to have a discussion involving the attending physician and the patient’s loved ones about different treatment decisions and limitations, such as nutrition and respiratory support, as well as personal requests (or advance care statements) regarding end-of-life care. Working in cooperation with the doctor, it’s possible to make an advance care plan that includes plans for what the patient wants their end-of-life care to involve. Possible treatment limitations to consider in the case of ALS include decisions on respiratory support, decisions regarding nutrition care, decision to refrain from resuscitation (DNR), and the use of antibiotics given into a vein at the end of life.
A living will is a good way to express your wishes in advance, in case your ability to communicate decreases later on. It’s also good to give thought to how your affairs will be managed if you’re unable to manage them yourself. Do you need a power of attorney, or a continuing power of attorney?
For more information and advice, talk to your attending physician or a social worker.
The purpose of palliative care is to relieve symptoms and help the patient cope with everyday activities. That’s why it’s good to start palliative care sooner rather than later.
As the patient’s functional capacity decreases, the role of palliative care becomes more significant. Preparing for the end-of-life stage well in advance by making a plan together ensures that the patient receives the kind of care they wish for until the end. Things to consider ahead of time include where the care takes place – for example, at home or in a residential care setting – and what kind of help and support is needed.
Symptoms such as shortness of breath can be relieved effectively. In addition, if it’s in line with the patient’s wishes, during the last days of life the patient can be put into a state of sleep (sedated).
Updated 10.4.2025
