The Perspective of Family and Caregivers

Survival beyond respiratory failure may last months or years [when mechanical ventilation (MV) is used] (1-3). When planning optimal management of care, physicians and health care providers may unintentionally overlook crucial problems regarding the needs of family caregivers who are held hostage in their homes. Those who are severely disabled and ventilator dependent rarely visit their physicians. Furthermore, health care professionals may have limited experience in observing LTMV patients in the home setting. 

Personal observations of family caregivers of ventilator users with ALS over a 22-year time frame 

What physicians and nurses can do to help family caregivers achieve life satisfaction and optimal outcomes 

Because of the enormous number of patient families that 1 have closely followed for many years, along with the numerous variables involved, it was not possible to database every observation. The following text includes data from my personal observations of family caregivers whose loved ones used LTMV. 

Overall, family caregivers of MV users perceived that the progression of immobility was the predictor of death, despite the use of MV. Also, hired caregivers, particularly nurses from hospices and home care agencies, have generally perceived this misconception. Often, families did not comprehend that respiratory failure is the primary cause of mortality of ALS and that MV can prevent respiratory failure and death. 

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By understanding the perspectives of your family caregivers, you can help your patient families avoid misconceptions, obtain necessary information for making best choices, and help them to achieve and maintain the best life possible. The outcomes of family caregivers and their loved ones using LTMV may depend on you. 

In contrast, the patient and the patient s family may be very interested in the outcome that this therapy has on the caregiving burden on the other hand, they may not be interested in the direct costs of the therapy for which they are not directly responsible. Most national regulatory bodies, such as the NICE in the UK. prefer a comprehensive, societal perspective on a drug s value because such a perspective incorporates all these variables. This broader perspective examines direct costs, caregiving costs and indirect costs. 

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