Death as a life event: better palliative and end-of-life care.

AS A LONG TIME end-of-life care executive, I remember well the year 1994, when we witnessed the willful Oregon voters and their choice to endorse physician-assisted suicide in the Death with Dignity Act. Some executives felt that the debate that ensued would do a serious disservice to the identity and focus of end-of-life care. Others among us - myself included - welcomed the chance to open wide the topics of preference, expectations, and competence from the point of view of patients and families. These issues, coupled with candid concerns regarding the abilities of and confidence in the provider community, were provocative. Oregon set the nation's pace regarding end-of-life care matters. And based on the article by Fromme, Guthrie, and Grueber, I feel it's safe to say that Oregon still is a leader. I wonder if the knowledge that assisted suicide is a real option in cases where end-of-life care is poorly performed has informed Oregon's excellent palliative care landscape. In many other states - including my own, Illinois - we are not nearly as successful as Oregon is in palliative care and end-of-life care. Certainly, Dr. Weeks and Dr. Nelson suggest in their article that there is more at play than simply the specter of suicide driving end of life improvements. Fromme and colleagues' piece cites a magnificent piece by Atul Gawande in the August 2010 New Yorker. Dr. Gawande's article is, in my opinion, 2010's best consumer-oriented document on end-of-life care. It references matters of particular concern - letting go, transitions, and timing. These issues play out in different ways in the hospital and the community. SCIENCE AND COMPASSION BLEND IN PALLIATIVE CARE Our experience at Rainbow Hospice of failed communication, expectation management, truth management, and capability mirrors the challenges Fromme and colleagues describe. I can also verify the unique utilization patterns described as high care-delivery-intensity regions, such as Chicagoland, in Weeks and Nelson's article. In the hospital environment, patients and families are at the zenith of fear, isolation, and exhaustion. The worst possible time to discuss end-oflife care preferences and palliative care options is during a hospitalization for an exacerbation (a worsening of illness). Yet it is the most common time these matters are raised. Why? A host of reasons: avoidance, confusion, procrastination, denial. Other reasons are more obscure and make navigation even riskier in a hospital environment: health literacy, family pressure, multiple subspecialties, financial worries, socioeconomic privilege, suspicion, doubt. At present, the inability to bill a Medicare beneficiary for discussion time on advance directives is a hot topic. While it is sensible that a physician should be paid for consultation time of any sort, it seems not so clear politically. How very unfortunate. I applaud the OHSU's deliberate and carefully designed Palliative Medicine and Comfort Care Team, whose work started in the mid 1990s, before palliative care was heralded as "the next thing" by regulatory, accreditation, and funding bodies. Though a substantial number of hospitals say yes when asked if they have a palliative care program, no benchmark exists for determining who should rightfully answer yes. Palliative care programs are defined by some as a part-time nurse who makes rounds to people in pain, or an interventional pain service, or chaplains who navigate anticipatory bereavement. The same question would likely result in significantly fewer affirmatives when measured against this example of a fully articulated palliative care program in a hospital: * A team of palliative care board certified doctors and nurses is deployed as consultants to help manage patients with burdensome, complex illnesses. The focus of the work is to enhance the quality of the patient's experience: use the lifetime remaining to help them live every minute as richly as possible rather than die every moment until the end. …