As some of you point out, the August 2 New Yorker includes a long article by Atul Gawande on problems in end-of-life care. The core problem is the lack of realistic conversation between physicians and patients about what the patient wants.
Most surprising to me in the article was the admission by Gawande–a leading general surgeon, medical commentator, and advocate of the use of life-saving checklists for surgical procedures–that he only recently learned what hospice care really entails. Tragically, most physicians, patients, and families turn to hospice only in the patient’s final days or even hours. Patients then miss out on hospice’s full range of:
- comfort care
- social supports
- extraordinary nursing coverage
- pain management
- respite care for family members–and
- the chance to talk about concerns and ongoing changes.
Hospice patients live as long or longer than their counterparts receiving more invasive services–such as the tubes, ventilator care, painful and futile procedures, and indignities in the usual course of treatment for patients with terminal diseases.
In 1982, the very early days of Medicare reimbursement for hospice, my mother-in-law moved into our home and enrolled in hospice. The hospice professionals’ responsiveness, knowledge, and compassion turned a horrible experience into an enriching one. Later my wife Vicki led the Robert Wood Johnson Foundation’s brilliant “Last Acts” campaign to improve end-of-life care, and I worked with a national hospice provider on communication issues. Our interest is reflected in my book in Section 6, “Making a Living Will and Proxy.”
In beautiful La Crosse, Wisconsin, overlooking the winding Mississippi River, the health care community has cut hospital costs for end-of-life care in half. It did this mostly by establishing a norm in which patients and physicians sit down and discuss the patient’s wishes.
Initially, the health reform bill before Congress required that insurers pay physicians for their time in holding these conversations. But, partisan critics of health reform irresponsibly applied the term “death panels” to this provision, and it was scuttled.
Still, patients have a right to talk with their doctor about this subject. No other topic is more important for physicians and patients to discuss. As Gawande observes, doctors take their cue for end-of-life care from patients. Without this conversation, you can expect tubes, indignities, and futile measures, rather than the enormous benefits of comfort, or “palliative,” care that most hospitals–with or without hospice–also can provide.