Learning to avoid injury is another important intervention that patients and family members can take. If people do experience pain there are medications and other therapies such as heat and massage readily available that are effective. It is imperative that patients and their family members know that usually people with ALS tell us they do not have pain. For those who do, the pain can be prevented or alleviated. For patients to be in control of which interventions they do or do not want at the end of life, it is important that they discuss these issues with their family and with their health care providers.
Planning is key to placing patients in control and respecting their wishes.
By letting family and health care providers know their wishes regarding a feeding tube, nasal ventilation or tracheotomy, patients' decisions can be respected. Even this is not enough. Both patients and their families have to be prepared by their health care providers for what to expect at the time of death to relieve some of the natural anxiety and fear of the unknown. Knowing what to expect and what they can do to assure a calm, peaceful death will help people with ALS and their families experience a death without pain or discomfort. Advantages of hospice include a focus on comfort and relief of symptoms like pain and breathing difficulties.