The Hague Responds to ALS Patient’s Search for Care; System Challenges Highlighted
The story of Dick Richard, a 56-year-old resident of The Hague living with ALS, has prompted responses from local authorities and the Ministry of Health, Welfare and Sport, revealing significant challenges in providing specialized end-of-life care within the city. Richard’s struggle to find a nursing home equipped to handle his complex ventilation needs has brought into focus the limited availability of such facilities in the region.
Several care organizations confirmed the scarcity of specialized ventilation care in the Hague.Basalt, Florence, HWW Zorg, and Residential care centers Haaglanden (WZH) all stated they are unable to provide the intensive, quality-assured care required for ALS patients dependent on ventilation. Basalt clarified that this level of care is currently only offered in a limited number of South Holland nursing homes, in collaboration with the Center for home Awarching. This leaves patients like Richard facing the prospect of receiving care outside of The Hague, or relying on intensive home ventilation.
The Ministry of Health, Welfare and Sport acknowledged the poignant situation, emphasizing the importance of allowing individuals to live and die in their preferred location whenever possible. However, the Ministry conceded that specialist intensive care, like that needed for ventilation, isn’t always available locally. They have engaged the Palliative Care Practice Team to explore potential support for Mr. Richard.
The Ministry highlighted High Care Hospices as a potential solution for patients with a life expectancy of three months or less, offering 24-hour nursing care and facilities for those reliant on medical equipment, with assistance from health insurers in locating suitable placements. They also stressed the importance of early conversations about end-of-life care between patients, families, and healthcare providers to facilitate timely support. A late diagnosis, they noted, can limit available options.
The municipality of The Hague affirmed its commitment to supporting residents during difficult times, even in the final stages of life. They emphasized a customized approach through the Social Support Act (WMO), offering assistance in navigating the complex Dutch care system. While acknowledging that solutions aren’t always straightforward – citing examples like fire safety concerns preventing stairlift installation – the municipality pledged to work with residents and their families to find alternative solutions and provide peace of mind.
