Lasting impact in families after death from ALS

INTRODUCTION: ALS severely affects families, who have to cope after the patient's death. There is no information on ongoing needs or concerns of families surviving the death of the ALS patient. We wished to survey these needs. METHOD: We developed a written questionnaire which we distributed at a single point in time to 32 patients' families. All patients had been followed in the McMaster University ALS clinic, and had died months to years earlier from ALS. RESULTS: The response rate was excellent (85%). ALS caused lasting emotional and financial hardship in families, and 37% of respondents felt they were coping poorly, sometimes years after the patient's death. This did not clearly relate to the bereavement period, nor to the physical or financial impact of the disease during life. In most cases the disease led to a strengthening of family ties. However, 15% of chief caregivers felt blamed by in-laws for contributing to the death of the patient; in these cases family ties weakened. Less than half of families were still receiving ALS information, although 75% still wished to. About two-thirds of families had ongoing questions about the disease, and a small number remained concerned that they, or their children, would develop the disease. Only a third of families were actively involved in ongoing fund-raising activities. CONCLUSIONS: It is possible to survey ongoing family needs after the death of the ALS patient. ALS causes lasting impact in surviving family members. There are ongoing needs that could be met by ALS clinics, ALS organizations, and healthcare systems, and opportunities for greater involvement of family members in volunteer activities, awareness, and fundraising. Generalization across other healthcare systems, and comparison with other disease states, could be important.