The intent of the statement is to increase understanding that palliative care occurs throughout the continuum of care and is a quality of life concept rather than an end- of-life concept; to increase understanding that palliative care can occur alongside care that may be curative in approach (i.e., they are not mutually exclusive); and to promote universal best practice in the delivery of and access to palliative care.
- Palliative Care should be viewed as a quality of life service integral throughout the continuum of care not only at end of life.
- People living with ALS/MND should be eligible to access any service or device available* that improves their quality of life at any time during the course of the disease from the time of diagnosis to last days of life.
- People with ALS/MND should be informed about and eligible to access available services that help them to remain as functional as possible in their accommodation of choice throughout the continuum of care.
- The provision of Palliative Care can occur simultaneously with interventions aimed at slowing down, halting, or reversing the underlying disease process.
- Palliative Care providers should recognize that the needs of persons with ALS/MND are different than other life-threatening illnesses and should develop programs to address these needs.
- Access to a support system to help family members cope during the course of ALS and after death should be included in Palliative Care service plans.
*Availability of certain devices and services may differ from one jurisdiction of care to another.
International Alliance of ALS/MND Associations
March 2009
