End-of-Life Care

Atul Gawande is probably a good physician, but he definitely is an excellent writer.  His essay in the New Yorker on end-of-life care is generally balanced and is very moving.   (New Yorker Story) The essay highlights the now common dilemma facing many patients and families dealing with a likely-terminal illness.  People want to fight to live as long as possible, but the medical treatments aimed at adding a few days, weeks or months of life usually bring side effects which create a lousy quality of that added life.  While there is debate about the costs of all this care, whether or not it reflects truly good quality care should be our main concern.

As Gawande sets forth, physicians are put in a very difficult position and often don’t know how to really help the patient make a good decision.  They often emphasize the positive and themselves hold, and give patients, an overly optimistic view of the likelihood of recovery.  They often fail to help patients understand how gruesome the side effects of radiation or chemotherapy can be.  In so doing, they may inadvertently deprive patients of important quality time with family and friends.

Gawande highlights the increasing use of hospice and palliative care as an alternative.  Unfortunately, particularly for those patients covered by Medicare, the reimbursement rules for hospice are poorly constructed and thought out and in essence force patients to agree to give up attempting to cure their disease in exchange for palliative care.  A more rational approach would likely ease the decision-making for these patients and, as some studies have shown, lower overall costs for this cohort of patients.

For many of the patients described in the article, avoiding every last possible treatment gave them time to enjoy activities and family, time that the patients and the family often described as some of the best, most meaningful times they had together.  Perhaps that is the most important message of the article; that we all should be focused on ensuring that we are using our time well.  Unfortunately, the new health legislation does not contain provisions that enhance patients’ rights to have honest and complete information about care for terminal illnesses and to have a good shared decision-making process with their physicians about how they prefer to live their last days.  The medical community should keep working toward that goal on its own.