Patient discussions
Physicians should advise patients about time-relevant issues. The time to focus on employment/disability is usually around the time of diagnosis; on driving at the point when work is no longer possible; on home safety when the patient no longer drives (e.g., use of the microwave instead of the oven); and on choking and swallowing when weight loss develops.[26] Belabouring dysphagia and end-of-life discussions at the time of diagnosis may serve to needlessly increase anxiety and elevate suicide risk. However, it is helpful to plan ahead for end-of-life issues and discuss advance directives once the patient and family feel ready for these discussions, so that patients can express preferences while they still retain the ability to do so.[102][103][132] Ongoing discussion of advanced care planning should then form part of regular follow-up.[101][133]
Ideally, at-risk offspring need to be aware of the familial nature of the disease in late adolescence and the availability of genetic testing as they reach adulthood. Guidance on how to introduce this is available from the Huntington’s Disease Youth Organisation. Huntington’s Disease Youth Organisation Opens in new window Family planning options (such as pre-implantation genetic testing) should be discussed with them by the time they enter into serious interpersonal relationships. The unembroidered prospect of a partner caring for a spouse with the disease and at the same time rearing teenage children should be pointed out, along with its sobering financial and emotional implications.[26] Early enrolment in disability and long-term care programmes, particularly employer-provided plans, should be given prudent consideration.
Directing patients and families to community resources, Huntington's disease support groups, and relevant governmental agencies can be of benefit. Huntington’s Disease Association Opens in new window International Huntington Association Opens in new window
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