Atul Gawande | JAMA | Quantity and Quality of Life: Duties of Care in Life-Limiting Illness

Atul Gawande's article is one of the best I have read:



"Although the experience is woefully understudied, a significant body of evidence is emerging to guide clinicians, health systems, and society toward better practices for people facing serious, life-threatening conditions.

That evidence has shown, importantly, that the amount of suffering that people endure in their last year of life is considerable. Singer et al1 recently reported on the experience of 7204 adults older than 50 years who died while being followed up as part of a longitudinal study of US health and retirement. The researchers found that, during their last year, 51% of study participants were often troubled by moderate to severe pain, and 46% to 53% also experienced at least a month of depression, periodic confusion, dyspnea, and incontinence during that time. Furthermore, among those who died between 1998 and 2010, none of these symptoms decreased in occurrence during their last year of life, but rather occurrence of pain, depression, and periodic confusion actually increased. Medical care for the symptoms people experience at the end of life does not seem to have gotten better; it may have gotten worse.

It could be argued that the findings simply reflect people following their wishes to trade the quality of their lives for therapies that extend their lives. But this is not the case. In 2014, the Institute of Medicine (IOM) published Dying in America, which included an extensive review of the medical literature on the end of life, including the efficacy of expert palliative care. Palliative care is a field dedicated to assisting seriously ill people with setting and achieving goals aside from just survival, which may include control of symptoms, attending to life projects, connecting with loved ones, or other vital objectives. The literature has established that when care is provided with a narrow focus on disease control, without palliative care expertise directed at eliciting these broader goals and tailoring care to include them, patients experience more pain, more anxiety, and more family exhaustion; they receive more nonbeneficial care and more hospitalization; and they do not live longer. Indeed, studies suggest that earlier involvement of palliative care specialists, either through consultation or enrollment in hospice, can produce increased survival." [footnotes omitted -- see original for citations]



JAMA Network | JAMA | Quantity and Quality of Life:  Duties of Care in Life-Limiting Illness