Invictus: Increasing Patient Choice in Advanced Illness and End-of-Life Care

Abstract

Humans' knowledge of our own mortality creates a conflict with our inborn desire to live. Cultures have grappled with this conflict throughout history. In The Epic of Gilgamesh, one of the earliest known works of literature, the title character wrestles with the concept. The Greek philosopher Epicurus tried to define death in context: Death does not concern us, because as long as we exist, death is not here. And when it does come, we no longer exist. Knowledge of our own demise should provide us with the means to influence some of its circumstances, and our choice might not be futile pursuit of the unattainable. Indeed, surveys have shown that when people are asked about such preferences, a majority indicate they would prefer death in hospice, with pain relief and with the support of loved ones, to death in hospital (Last Acts 2002). However, too frequently, these preferences are not honored. In many cases of critical illness, people are given the choice of where to die too late, or not at all. Few people would aspire to end their lives in intensive care units, on various forms of life support, in pain and isolated from loved ones. We are justifiably proud of our medical technology, skills, and capabilities and of the compassion our concern bespeaks; however, do we view knowledge of our mortality as a challenge to be defeated at all costs, despite the certainty that we will lose? Is there a better path? Is the laudable Talmudic precept to preserve life absolute, or is the realization and gracious acceptance of a point of inevitability a better way? Can we transcend the emotional and physical pain by dying with the emotional and physical support of our loved ones and trusted healthcare providers? Can we reconcile the goals of preserving life and accommodating a pain-free death that is supportive to all concerned? This reconciliation will require us to identify points at which decisions and transitions are appropriate; it will also require that the healthcare system and our culture come together and recognize supportive end-of-life care as a feature of the compassionate society we wish to be. There has been a considerable amount of progress in addressing the needs of advanced illness in the last few decades. Since my 1972 graduation from medical school, I have seen the hospice movement yield a large number of valuable and effective institutions in many countries, including our own (NHPCO 2010b). We have also seen hospice use increase considerably (MedPAC 2004). Since the ACOVE (Assessing Care of Vulnerable Elders) study demonstrated the lack of end-of-life care quality (Wenger et al. 2001), deaths in hospice have increased and deaths in acute care facilities have decreased (Hogan et al. 2000). Many segments of the healthcare system have contributed to increasing hospice use, including palliative care consultation and expertise at an increasing number of hospitals; the advent of palliative medicine as a specialty; specialized case management by health plans (Meier et al. 2009); and efforts by governments and other organizations to address these issues. COMPASSIONATE CARE At Aetna, we developed the Compassionate CareSM program to provide support to members with advanced illness and to their families and to help patients access optimal care. One element of this program is enhanced hospice benefits. Aetna allows members eligible for the program to access hospice care with an advanced illness diagnosis of 12 months or fewer, as opposed to the traditional standard of six months. Members can also continue to receive coverage for curative treatment while in hospice care under certain commercial group health plans. The second and most important element of the program is its specialized case management services. Our nurse case managers are specially trained and experienced in care management of terminal illness. These empathetic and dedicated nurse case managers help * engage members, family, and caregivers and physicians to help initiate discussions on options and advanced care planning and to present alternatives; * coordinate medical care, benefits, and community-based services; * identify resources to make members as comfortable as possible, addressing pain and other symptoms; and * provide and facilitate culturally sensitive emotional and psychosocial support. …