The Hague Responds to ALS Patient’s Search for Care;โค 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 specializedโ end-of-life care within โฃthe โฃcity. Richard’s struggle to find a nursing โhome equipped to handle his complex ventilation needs has brought into focusโ the limited availability of โsuch facilities โin the region.
Several care organizations confirmed the scarcity of specialized ventilationโ care inโ the Hague.Basalt, Florence, HWWโฃ Zorg, and Residential care centers Haaglanden (WZH) all stated they are unable to provide the intensive, quality-assured care required forโค ALS patients dependent on ventilation. Basalt clarified that this level of care is currently only offered in a limited numberโฃ of South Holland nursing homes,โข in collaboration with the Center for home Awarching. This leaves patients like Richard facing the prospect of receiving care outsideโข of The Hague, or relying on intensive home ventilation.
The Ministry of Health, Welfare and Sport acknowledged the poignant โsituation, emphasizing the importance of allowing individuals to live and die in their preferred location whenever possible.โข 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 exploreโ potential supportโ 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 โfacilities for those reliant on medical equipment, with assistance from health โinsurers in locating suitable placements. They also stressed the importance of early conversations about end-of-life care between patients, families, and healthcare providers toโ facilitate timely support. Aโ lateโค 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 stagesโ of life. They emphasized a customized approach through the Social Support Act (WMO), offering assistance in navigating โthe complex Dutch care system. While acknowledging that solutions aren’t alwaysโค straightforward – citing examples like fire safety concerns preventing โฃstairlift installation – the municipality pledged to work with residents and their families to find alternative solutions and provide peace of mind.
