Are we forgetting about our caregivers?

The New York Times has a very interesting piece on the caregiver experience.

Americans spend so much time debating so many aspects of health care, including insurance and access. Almost none of that covers the actual impossibility and hardship faced by the many millions of friends and family members who are caregivers. It’s hugely disrupting and expensive. There’s no system for it. It’s a gaping hole.

Consider the case of one caregiver helping provide the support a friend needed after receiving a cancer diagnosis.

Every appointment required Jim and Ali to take off work. They live in Indiana, and at one point they had to pay for flights and a hotel room and everything else associated with a trip to New York — none of it covered by insurance — because no one would do the second opinion remotely. (He had a kidney removed in an initial operation, then doctors found he had a rare cancer, a neuro-ectodermal tumor, instead of the expected renal cell carcinoma).
Chemotherapy is rough. After each cycle, Jim would pretty much sleep or rest for a week, unable to work. Someone had to take the time to be with him. Sometimes it was Ali; sometimes it was my wife, or me, or other friends.

Measuring the value of new treatments that improve patients health often focuses on the benefits the new treatment can provide to patients. But curing a disease or significantly reducing its impact on their quality of life not only can transform the patient’s life, but also that of their caregiver as well.

As I wrote two months ago, the impact of a disease or a treatment for that disease on caregiver burden can be quantified. The  CarerQoL and the Care Experience Scale (CES). are two such instruments. In fact, the Second Panel on Cost Effectiveness in Health and Medicine recommends incorporating a treatment’s impact on caregiver burden as part of any value assessment conducted from a societal perspective.

In short, caregiver’s are health care’s unsung heroes and the value of new treatments to free up their time should not be ignored.


  1. “In short, caregiver’s are health care’s unsung heroes and the value of new treatments to free up their time should now be ignored.”

    Should now be ignored or should not be ignored?

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