Letter

The mucopolysaccharidoses (MPS) are a group of rare, genetic, lysosomal storage disorders characterized by progressive, multisystemic accumulation of glycosaminoglycans. Individuals with severe MPS often present with significant neurological involvement and may exhibit challenging behaviors, including hyperactivity, aggression, and sleep disturbance. These behaviors can cause adverse outcomes and necessitate the development of specific measures to support affected families. Through an analysis of the results reported by Hoffmann et al.

Tracy et al argue that there is a pressing need for health care to be redesigned to make it less burdensome for those it exists to serve, namely patients and caregivers. Our hospitals need to treat family caregivers as partners in care, not as visitors. And physicians, in collaboration with interprofessional teams, need to identify and engage family caregivers better to foster greater caregiver confidence and capacity.

Four decades ago, my parents were not permitted to hold their dying infant because they were “visitors” to the intensive care unit. I learned from them that our health care policies sometimes carry huge human costs. As a geriatrician and medical director of a long-term care (LTC) facility, I have learned that family members are not merely visitors; family members are critical partners in our care.

Effective communication improves family satisfaction, trust in ICU physicians, clinical decision-making and psychological well-being being of family members (Lilly et al., 2000; Wood, 2018). Complete isolation due to the COVID-19 pandemic restrictions disables clinician-family meetings and the limitations of hospital visitation policies do not permit caregivers to be near their loved ones, with the risk of leaving them without any form of trusted representation and advocacy. Always be open minded to new ways of acting your mission.

This is an open letter to acknowledge the essential and increasingly challenging role unpaid family carers are playing in the COVID-19 pandemic. The letter is written by members of the CAREWELL team, a HRB-funded project that aims to promote health and self-care behaviours among working family carers. Family carers provide care to family and friends in the community who need support due to old-age, disability and chronic illness.

Extract: Besides their feeling of helplessness and uncertainty in making treatment decisions on behalf of PWD, family caregivers tended to rely on medical practitioners to make difficult EOL care decisions. 

Here, we report that the use of a baby‐type robot (Smibi; Togo Seisakusyo, Aichi‐gun, Japan) helped improve the healing process and reduce the care burden of an aged woman undergoing home‐visit rehabilitation.

To the editor:

We read with interest the recent article titled “Providing care to a family member affected by head and neck cancer: a phenomenological study,” by Dri et al. [1]. The authors concluded that caregivers play a crucial role in patients’ post-treatment recovery, and future planning for the treatment of head and neck cancer (HNC) should consider caregivers’ needs.... 

Reports of elder abuse range from financial scams to incidents of family violence, with public warnings issued accordingly from the Federal Trade Commission and the American Bar Association. The Centers for Disease Control and Prevention defines elder abuse as an intentional act or failure to act by a caregiver or another person in a relationship involving an expectation of trust that causes or creates a risk of harm to an older adult. Abuse of older adults can be physical, emotional, financial, neglect, or any combination of these.

[...]I would like to revise his statement slightly, to read: ‘We acknowledge that family and significant others can play a significant role in the process of decision making in some patients from non‐Western or Western cultural backgrounds more or less.’ [my emphasis]. [...]we equally know that doctors do not fulfil the obligation of medical information provision from the perspective of Chinese patients.